Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-13-03 18:56

Folks,
I am posting this message when I don't have much time to put it together, because I know it is a pressing issue for a few of you. The key points will be here immediately, please look at this first message from time to time as it will grow in size as I get spare time to put more material together.

There are two main types of Lymphocyte cells in the immune system. The first type, T-Lymphocytes, is responsible for your immediate-response and bacterial immune reactions. It is the type that help form the granuloma of Sarcoidosis.

The other type of Lymphocyte is called a B-lymphocyte. These are responsible for the benign (as well as malignant) growths of Lymphoproliferative diseases we lump together under the name "cancer".

A sarc patient will nearly always be give a false cancer diagnosis unless a sizeable sample of biopsy tissue is taken. For example, a "needle biopsy" will destroy the structure of the sarc granuloma, making it very hard to recognize under a microscope. Many pathologists will mistakenly classify a needle biopsy of sarcoid tissue as cancer when it is not.

There is a test you must all insist upon. Doc must write it up when he sends you off to the surgeon/pathologist for the biopsy. Doc's prescription MUST SPECIFY THAT YOU HAVE SARCOIDOSIS, and that tissue samples must be STAINED to test whether they are for T-cell or B-cell tissue proliferations. This article explains why T cells are what you want to find... Usually a sarc patient has an over-abundance of them.

There is a lot more information I have to post, that is the key stuff. Misdiagnosis of cancer in a sarc patient is something the oncologist probably doesn't bother about too much - "we were just being on the safe side" he is likely to say. In my opinion, you, as patients, deserve better consideration than that. The worry, pain and complications from cancer therapy cannot be taken lightly, especially by somebody already struggling with sarcoidosis.

A good book to read is The Cancer Microbe, by Dr Alan Cantwell. Dr Cantwell first found bacteria in the tissues of Sarcoidosis patients in 1982, and if his predictions about cancer prove to be just as correct, this book may turn into a best-seller... (click on the "Used and New" link)(ABEbooks.com also had copies and BarnesandNoble.com is now on back-order)

A paper was published recently "Blockade of angiotensin AT1a receptor signaling reduces tumor growth, angiogenesis, and metastasis" that makes interesting reading - it concludes ARBs "may therefore become an effective novel strategy for tumor chemo-prevention". Is there any disease that ARBs don't help?

The other piece of good news is that Vitamin D (1,25-D) protects your body against cancer by activating your immune system. Of course, this is the last thing you want as a Sarc patient, but cancer patients are now being given D supplementation. You all already have much higher levels of 1,25-D in your bodies than any other sector of the population. It is activating your immune system, just as Docs are trying to do with the new cancer D-therapies. Think of it as a built-in immunity... It doesn't mean you can't get a malignant disease, it just makes it less likely - there has to be some benefit for all this suffering from Sarc

And then there are just plain old hospital mistakes...

..Trevor..
ps: The NewYork Times link on Vit D and cancer requires free registration with the New York Times before you can view it (sorry)
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Denise Testa (---.connect.com.au)
Date:   01-14-03 19:35

I am really shocked by some of the things I hear from overseas, as far as health care and medical profession is concerned.

Of course, no one can tell from x-rays or scans. However, when they looked at my x-ray two doctors told me bilateral hilar lymphadenopathy was far more common in sarcoidosis, while unilateral was more indicative of carcinoma or lymphoma.

I was also lucky in that the pathologist did a frozen section in the operating room, so they were ninety five percent sure it was sarcoid even before they sent off the tests for histological and bacterial analysis.

As bad as our health system is supposed to be I think we are blessed in Australia.

Nevertheless, these drugs they prescribe cause us probs. I now reckon I have a c-difficile bowel infection again thanks initially to the antibiotic and the prednisone which I only finished yesterday. The pred makes you more susceptible to these things. It seems one has to forever be taking drugs to counteract a previous drug side-effect.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-03 21:03

Denise - well what about this error? I am told it is not unusual, it is just that most folks never find out because they can't read the jargon in their pathology reports...

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Kathy Westbrook (---.benslm01.pa.comcast.net)
Date:   01-21-03 14:50

On December 26, 2002 after PET scan I was given the results of cancer in spine, ribs, adrenal, lymph nodes and lungs. So far all tests are coming up negative for cancer. I had a lung biopsy on Friday, 1/17/03 and hopefully the diagnosis will be sarcoid. I had Chronic Fatique diagnosis in 1986 and breast cancer in 1996. Very interesting reading and very enlightening.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-21-03 14:58

Actually Kathy, what my comments were trying to say is that if your biopsy doesn't come up as Sarc then you need to get a second opinion.

In other words, you shouldn't need to use the word "hopefully", as, if the first pathologist comes up malignant, especially given that all your other tests are coming up negative, then the pathologist most probably missed something. You shouldn't start worrying until you get a second opinion (And now you know how to tell the path guy how to look for the CWD bacteria, while he is at it...)

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Jill (---.gci.net)
Date:   03-09-03 23:48

After five months of various tests and procedures my husband was told last week that he probably has a rare form of sarcoidosis called nodular sarcoidosis. We have found absolutely no info regarding this type of sarcoidosis. We have been told that he needs to consider having surgery on the lungs to remove the largest nodule to rule out the possibility of B-Cell Lymphoma. He has already had two CAT Scan guided needle biopsies. The most recent showing granulomas. Do you have any experience in, or information on nodulair sarcoidosis or patients who have ended up having B-Cell Lymphoma? I have read about other conditions that mimic sarcoidosis but have seen nothing about B-Cell Lymphoma.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-10-03 05:47

Hi Jill,

Welcome to sarcinfo. I'm sorry your husband is having such a tough time of it. I'm not sure what the doctor means by nodular sarcoidosis. Lung involvement can form nodules, I have some myself, it's not unusual. Many of us have been misdiagnosed with cancer but since there is already a biopsied diagnosis of sarcoidosis, it's likely all the nodules are due to that. The most important test he can have done is the D-metabolites.

Please spend some time reading the patient tutorials,and physician tutorials at the top of the page, the links to articles at the bottom of the page and the topic messages (threads) especially those that are starred. There is also a search feature on the site where you can type in words and find specific information. If a phrase is written in bold type, you can click on it to automatically get more information.

You may need a medical dictionary for some of the papers but I hope you can get the basic idea of Trevor's theory of sarcoidosis etiology and treatment. Let us know if you have any other questions.

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-10-03 06:03

Jill,
Additionally to what Meg said, ALL lymphoma are B-Cell mediated. So that is not unusual in any way. Sarc inflammation is T-Cell mediated. There are pathology tests that can be done on your old biopsy tissue to figure out whether they are B-cell or T-cell driven. It seems to me that your Doc wants another operation "just to be sure". Maybe an understanding of the biochemistry and pathology would hlep him to work better from the data he alraedy has. You should be able to help there, by looking at the references in this thread, and digging all the info up.

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-10-03 09:01

Jill,

The National Cancer Institute has a tutorial on the immune system (listed below and) at http://press2.nci.nih.gov/sciencebehind/immune/immune01.htm which explains the immune system terminology.

Belinda
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: leslie mcconnell (---.proxy.aol.com)
Date:   03-10-03 09:48

I was told that I probably have sarcoidosis or Lynphomia .All my test have come back normal and my biospy only showing dead cells. I feel tired all the time, pain, swelling and short of breath. The Pulmonary Dr. questioned my shortness of breath saying that it doesn't come and go-I notice it more at times-mostly in the mornings. It was called to my attention at first! Sometimes I have no voice. I feel like I have oxygen but can't use it. I also have chest pains which I was told at one time was angina but was recently told by my Dr. that it wasn't angina and was probably TMJ which I don't believe.
I would like to go somewhere for a second oppinion but don't know where to go. I am in Kentucky. Any suggestions?
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Jan Lewis (---.lgeenergy.com)
Date:   03-10-03 11:43

Leslie, I am also in Kentucky (Louisville to be exact). Feel free to contact me at my e-mail address and we can talk.

I am having better results at getting the specific treatment mentioned at this site through a dr. who is considered "Alternative." He does take some insurance and is open minded and helpful. Name is John Baird (but is not a gynecologist. There is a John Baird in that profession here as well.)

Let me know how I can help you.

Jan Lewis

<<Contact the system administrator for email address.>>
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-10-03 17:44

Hi Leslie,

It must be confusing for you when your doctors are unable to tell you what is wrong and question your symptoms. All the symptoms you mentioned could be due to sarcoidosis and/or elevated 1,25-Dihydroxyvitamin-D. My suggestion would be to ask your PCP if he/she will test your blood for D-metabolites.

In the meantime, you can help yourself by eliminating all sources of Vitamin D from your life. This is more fully explained in the patient tutorials and the topic thread Vitamin D levels in food.

There aren't many doctors yet who are knowledgeable about this protocol for treating sarcoidosis. But many of us have found doctors who are willing to read the physician tutorials, order the test/meds and help us get better.

Good luck,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: DJ (---.tnt3.billings.mt.da.uu.net)
Date:   03-10-03 19:53

Dear Leslie,

I can so relate to your frustration! Just last month I was diagnosed in the hospital emergency room with lymphoma and probably breast cancer. I had gone in because of the terrilble joint aches, fatigue, blurry vision, chest discomfort and shortness of breath. We went thru three weeks of hell worrying about the cancer. My surgeon took my case to the tumor board and 9 out of 10 physicians concurred that it was cancer. However, one radiologist said she thought it looked exactly like sarcoidosis - the first time I had ever heard of this disease. Guess what- she was right! I had a mediastinal lymph node biopsy and the pathology was conclusive for sarc. I am so glad I did the full biopsy and not a needle biopsy which wouldn't have been so definite.

I was lucky enough to find this site first in my search for info on sarc. Immediately cut my D intake and stayed inside. Although I have added erythema nodosum (blotchy legs) and night sweats to my symptoms, my aching and coughing have already reduced significantly. As for Doctors... I hope you will not be discouraged or be intimidated by them. You know your symptoms best, and you may have to help them understand. I suspect most of the doctors I have encountered so far have gotten their information about sarcoidosis from the medical dictionary. It just isn't that well known. My GP has been my best ally in this adventure, once I provided him with Trevor's research. The specialists have been much harder to convince.

Hang in there Leslie! There are many good people in the medical field that want to help. If I could find one the the wilds of Montana, I'm sure you will find one in Kentucky that can nail down your diagnosis.

DJ
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Peter Davis (---.auckland.clix.net.nz)
Date:   04-02-03 12:43

This is very intersting
I was diagnosed with Sarcoid and had treatment for 18 months with Prednisone. During this time I developed a swollen tonsil which after a biopsy was diagnosed as Lymphoma. I had Chemoterapy treatment (6 courses over 5 months).
Recentley my Sarcoid returned (almost immediatley after stopping the Prednisone.)
I am now looking into the antibiotic treatments - I need to find doctors/patients in New Zealand with experiece of this kind of treatment.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: grant (---.134.95-148.clta.telus.com)
Date:   01-29-04 18:24

This discussion list just raised some red flags for me! (I've been a 'sarcoidian' for many years now... just started Trevor's protocol...)

But my mother had a breast removed last year for cancer, THEN six months later was told she also has Non-hodgkins lymphoma, NOW has been told she has another lump and they are checking to differentiate between breast cancer or lymphoma... (Her father died many years ago from Hodgkins lymphoma.)

After reading this thread, I'll be calling her tomorrow to help make sure she is getting the CORRECT DIAGNOSIS and isn't being treated for cancer when she has sarcoid!

Grant
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lowelle Messner (---.clvdoh.adelphia.net)
Date:   01-30-04 04:43

Grant,

I, too, have wondered the same about the diagnosis that my Mother recieved back in 1986. She ended up with a double mastectomy, with radiation for treatment.

In 1992, she was diagnosed with "lung cancer" and assumed that her "cancer" had just returned in another place. This time, she chose no treatment, because of all of the difficulties she had the first time with surgery/radiation.

This "cancer" eventually spread throughout her body and she passed in 1996. By that time, it had spread throughout her brain and spinal column. There were strange patches/blotches on her skin that could have been skin sarc, too. Now, I wonder if the second dianosis of "cancer" was, in fact, Sarcoidosis? My intuition says that it was.

I guess that I am Blessed that my Doc took out the whole lymph node from my groin and made the correct dianosis.

As sick as we may be, we have to be advocates for our own health! Our lives may well depend on it!
Lowelle
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-06-04 14:14

Lowelle,

Many times, doctors do take a closer look and do get the correct diagnosis of sarcoidosis, as in this case and this case, where amelanotic melanoma of the iris was suspected.

Belinda
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Grant (---.134.75-213.clta.telus.com)
Date:   02-18-04 06:08

I sent a question to my mother's cancer doc regarding her diagnosis, to ensure that they were aware of family connection with sarcoid. I received the following reply. Can anyone tell me if these tests mentioned will provide a complete differentiation between sarc and cancer? Thanks, Grant
----------------------------------------------

Thank you for yours e-mail. No, we don't have any doubt about the diagnosis. Diagnosis was made from bone marrow biopsy and it was review again in Vancouver where they did a special test called Flow Cytometry which confirm the diagnosis.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-18-04 06:49

Grant,
Machinery will only fly properly in the hands of a good pilot

Ask for a copy of the pathologist's report. That will mention what they looked for and what they found.

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Grant (---.134.92-29.clta.telus.com)
Date:   02-20-04 18:40

Okay, I have a copy of my mother's pathology report. Lots of information -- what should I be looking for? The test was done on a bone marrow biopsy. The Hgb is at the lower limit. WBC is 4.5. "The granulocytes, lymphocytes, and monocytes are morphologically unremarkable". Lymphocytes are 15.5 but I see no differentiation between B or T.... does the fact that the sample is taken in the bone marrow perhaps ensure that these are B lymphocytes being examined?

The conclusion states: "This bone marrow examination contains evidence of lymphomatous involvement of the bone marrow space. The histological features are consistent with a follicular lymphoma.

DIAGNOSIS
Bone marrow aspirate and biopsy, right iliac crest:
Lymphomatous involvement of bone marrow space.
-------------

Help? thanks much,
Grant
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-04 20:49

Grant,
A follicular lymphoma is a B-cell condition. The histology points at that. Particularly note the talk of "granulocytes, lymphocytes, and monocytes are morphologically unremarkable". That means the monocyctes, which in Th1 inflammation grow into macrophages and Dendritic or giant cells (under the catalysis of 1,25-D) are staying as monocytes.

The sample was apparently not stained to determine the balance between T and B lymphocytes, this is why I suggest that everybody needs to specifically request this stain to preclude a sarcoid 'thymal mass'.

Based on what you transcribed, and what was examined, I agree that what the pathologist saw was consistent with a lymphoma.

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Grant (---.134.83-4.clta.telus.com)
Date:   02-23-04 06:43

Trevor,

Thanks. As long as I'm confident that it's lymphoma we're dealing with, I'll encourage my mother towards a regime rich in vit. D -- based on the previous information that 1,25-D seems to be helpful in fighting cancer.

Regards, Grant
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-02-04 22:07

(This post has been moved by Meg to the appropriate thread.)

Author: Susan (c-67-171-177-191.client.comcast.net)
Date: 02-04-04 21:25

Does any one know if studies have been conducted to determine if there is a possible correlation between sarcoidosis and skin cancers? How about studies investigating if those who have sarcoid have higher incidences of skin cancer than the general population? Thanks for any input!
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-02-04 22:09

(This message has been moved to the appropriate thread.)

Author: Admin (24-52-244-15.vnnyca.adelphia.net)
Date: 02-05-04 05:49

Susan,

Yes, there are studies to show a higher incidence of cancer diagnoses in sarcoidosis patients. These are flawed, however, as they did not question the cancer diagnosis by checking the pathologists report. Since there a lot of sarc folks who are wrongly diagnosed with cancer (as discussed in this thread) those studies are unreliable.

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-03-04 09:05

Susan,

My search of PubMed found no significant links between skin cancer and sarcoidosis patients.

Belinda
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: donna adams (---.tc-1.alb-pt.ny.localnet.com)
Date:   04-12-04 10:56

Hi
Iwas dx'ed with sarcoid in 92, lung involvement apparently now in remission. In 96 I had 1 month of fevers attributed to sarcoid. In 98, swollen lymph nodes in the axillary area and chest also attributed to sarcoid. In 2003 I had complete hysterectomy and diagnosis of uterine cancer spread to ovary. Pre surgury CAT-125 was 1147 , post surgury it was 145 and after chemo 20 ( normal range 0-35). A pet scan was fine then the CAT # started to slowly rise, another PET scan showed a lot of new swollen lymph nodes in the periaortic area, axillary area, and the lumbar region. Biopsies of lymph nodes taken during surguryin 2003, confirmed sarcoid in the groin nodes. A biopsy this week showed sarcoid in one of the newly inflamed nodes removed from the axillary area. My CAT-125 is at about 81 and my gynecological-oncologist does not know what steps to take ( his thinking is, of course, cancer ). I do not have a specialist following the sarcoid and my pcp is real good at immediate sickness not with followup or chronic. I have never had any treatment for the sarcoid and need to get some help to know where to go and what to do.
Thanks
donna
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-12-04 14:58

Hi Donna,

Welcome to SarcInfo. Thanks for sharing your story. I can understand your oncologists concerns at the rising CAT-125. Correct me if I'm wrong, but I was under the impression that the CAT-125 was an imprecise test. Does your oncologist have a level that is indicative of the need for further chemotherapy? All the biopsied lymph nodes you mentioned showed sarcoidosis and not cancer so that is encouraging.

You are actually lucky not to have had any treatment for your sarcoidosis because the standard treatments are toxic and ineffective. Treating now with the Marshall Protocol should resolve the sarcoidosis inflammation in your lymph nodes and make it easier for your gynecologist and oncologist to monitor your cancer.

You do not need a specialist to help you with the Marshall Protocol. Your PCP is perfectly capable of ordering the needed tests and medications if he is willing. I will email you a guideline for him. Also, print out the first three papers for physicians at the top of this page to give him some background on the etiology and antibiotic treatment of sarcoidosis.

Good luck,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-16-04 17:53

Author: Susan Kolar (DHCP210-066-gqh.houston.nam.slb.com)
Date: 07-16-04 12:39

I have RA and had my blood work done about a week ago and am still waiting on the results. I started Benicar after the blood work and seem to be doing OK - my blood pressure has not dropped at all, which I guess is common at the higher doses (started at 3 per day, just increased to 4). Seems to give mild relief, although I dropped to 7 mg (from 8mg per day) of prednisone yesterday and am definitely feeling it today.

I skimmed the papers a while ago, but today was rereading the one on "Implications for Autoimmune Disease" and something caught my eye: that elevated 1,25D seems to be associated with a lack of proliferation of breast cancer?? Did I understand this correctly? (Reference [23])

I am asking because I had breast cancer in late 2000 (negative lymph nodes, no metastases, which surprised my oncologist I think, because the lump was kind of big - 2.5cm). If I drop my 1,25D level for this protocol, am I increasing my risk? Did a (possibly) high level of 1,25D prevent the cancer from spreading?

This scares me. Can Trevor or Meg respond?

Thanks,
Susan
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-16-04 17:54

Author: Admin (69-160-158-36.vnnyca.adelphia.net)
Date: 07-16-04 13:37

Susan,

As increased reliance is placed upon flow cytometry in the diagnosis of cancer, and less upon good ol'fashioned pathology, there are more and more folks with Th1 diseases who are being diagnosed with cancer

Two of the markers now used to identify cancerous tissue, bcl2 and CD10, both give false positives in patients with Sarcoidosis, and, I suspect in patients with R.A., like yourself. IMO, you need to go back over all the raw pathology and flow-cytometry freports from your surgeries and MAKE SURE that diiferential diagnosis staining was done to distinguish B-cell masses from T-cell masses.

There is no evidence that ARBs increase the risk of cancer at therapeutic dosage level. All drugs approved in the last 5 years, including Benicar, have been forced by the FDA through a particularly stringent set of testing to ensure this.

..Trevor..
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Christin (---.cvx31-bradley.dialup.earthlink.net)
Date:   01-02-05 22:59

Help...I can hardly breathe....I had surgery three years ago....I was diagnosed with probable sarcoidosis....the lymph nodes around my trachea in my chest had swollen and were choking me then. So many misdiagnosis before...I am weak pain all over my body...and can hardly breathe...I need oxygen please help me..worses day today....sincerely Christina Kennedy ph 805 6446141...please help me...could it also be a mycobacterium...thicvalmore k pus sputum from especially right clung...Blessings...thank you address 541 Valmore Avenue ,Ventura,California03003
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-02-05 23:25

Christina,

Welcome to SarcInfo. If you are having a medical emergency right now because you cannot get enough air, you should CALL 911.

Let us know if you are okay and we will be happy to tell you how to treat your sarcoidosis so that you will recover and not continue to deteriorate.

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   01-03-05 21:35

In 1995, after a CAT scan, I was told I had kidney (r) cancer and it would have to be removed. In August '95, they removed it and discovered it had been overtaken by a cyst and was encaptulated. I asked them to check it for sarc, but they would not. To this day, I still believe it was sarc. It was a very scarey time. Bonita
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-03-05 22:14

Bonita,

That's an interesting story. This case report indicates that sarcoid granulomas in the kidney can mimick a renal pseudotumor. This report indicates a kidney mass can be due to an inflammatory pseudotumor. Your experience underlines once again the importance of requesting or insisting upon copies of reports (in this case, a pathology report) for our own records.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: itiona (---.client.comcast.net)
Date:   01-04-05 03:13

Hello,
A follow-up to susans question, can decreased 1,25D increase our opportunity for cancer now that our levels have droped. I have always been querious about this as well.
Thanks

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: itiona (---.client.comcast.net)
Date:   01-04-05 11:23

Hi guys
I was wondering if you guys recieved my question? I'll go a head and post on the general question page maybe you guys did'nt see it.
Thanks Itiona

Dx sarc 5/04, Mp 7/04, currently on 5th month of stage 3 of mp,1,25 D=31.6, 25 hydroxy=10.4 wbc=3.8(low) sed rate=3
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: tom d (---.208.194.74.conversent.net)
Date:   01-19-05 08:58

my brother was diagnosed with nsclc in right lung last summer...first biopsy inconclusve, second one positive; he has also had sarcoidosis since at least 1978 when a big spot was found on same lung...he had radiation and chemo for the nsclc, which shrank the "tumor", but a recent PET scan showed many more nodes on other lung, abdomen, lymph nodes...they want to do more chemo; if it is mostly sarc and just a little cancer, will the chemotherapy cause more harm than good? the first round of chemo did nothing, in fact the "cancer" seemed to grow and spread....he almost died from polio as a small boy and i'm wondering if the PET scan is showing sarc or nsclc? what should we do?

<<Moderator's note: NSCLC means "non-small cell lung cancer.">>

 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   01-19-05 21:38

tom d,

Welcome to SarcInfo. I'm sorry your brother is so ill. I believe it's possible that the PET scan is showing sarcoidosis and cancer. He will have to rely on his doctors for accurate diagnosis to avoid incorrect treatment. Chemotherapy won't make sarcoidosis worse but it will delay the necessary treatment for sarcoidosis.

If you have any questions on how to treat sarcoidosis safely, please don't hesitate to ask.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Holly (---.proxy.aol.com)
Date:   02-19-05 13:43

I'm curious, Tom D, what you found. My sister has a similar diagnosis, and we mentioned the possibility of sarc to her doctor. He poo-pooed it, but we don't want to just nod and agree. If it is sarc we need to know before radiation starts. Does anyone have suggestions for getting the docs to reconsider? Or, are there any conditions (example: unilateral presentation only) that would definitively rule out sarc? We're in Indianapolis in case anyone knows a good specialist here.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-19-05 17:35

Holly,

Welcome to SarcInfo. If your sister has a biopsied, definitive diagnosis of cancer, then you can either trust that the doctor is correct or get a second opinion. There are no conditions that rule out sarcoidosis. Sarcoidosis is often called the great imitator because it's presentation is so varied.

Since her symptoms are similar to sarcoidosis and sarcoidosis is often initially misdiagnosed as cancer, you can ask your doctor to do a simple blood test, called the D-metabolites to see if the results indicate Th1 inflammation and therefore, the possibility of sarcoidosis. Since these tests require expertise to analyze, we encourage you to post the actual numbers here.

Radiation is a serious step. Your sister should feel confident that she is following the right course of treatment. Her doctor should be willing to provide you with as much explanation as you need.

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author:  Lee (---.ma.seidata.com)
Date:   02-21-05 10:10

Hi All....I wonder about DX like "pre-cancerous" fibrous tumors and nodules .....that took my uterus(1990).....and part of my thyroid(1968).....was NOT really just sarcoidosis.
This sounds reasonable to me....and each surgery always was preceeded by alot of "outdoor"living. I was a surfer and avid swimmer in the late 60's.
Later in adult life I became an avid camper and outdoorswoman.
Having my own pool I spent alot of time swimming and sunning all my life....only to end up with chronic undiagnosed illnesses until last summer when I was finally diagnosed with sarc.

Sarc w/ Lofgren's +Lung Damage 11/04
Labs-ACE-68 CRP)+(H) Ionized Calcium-5.32
Narrow Angle Glaucoma w/ vision loss Sed Rate-13
Hashiomotos(armour90mgs)w/ TSH-25.22 FreeT4-0.35 Vit D ratio-2.13
2/05Benicar2/22/05Mino 25mg3/8-50mgs minoTSH-0.93
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Elizabeth Hunt (---.dial.indiana.edu)
Date:   02-21-05 18:23

Dear Dr. Marshall—

FORGIVE ME IF YOU ALREADY GOT THIS. I am not sure it went through!

Thank you so much for your very informative Web site. You are helping so many people.

Now I wonder if you can help me. I have a number of questions (probably too many for you to answer) but I am going to throw them out there anyway. Any information you can offer will be much appreciated.

Here goes:

1) Are there things that are known to trigger a first occurrence of sarcoidosis, for example, is it known to ever follow on the heels of a surgery in which a patient’s lungs were intubated for anesthesia?

2) Does a first occurrence usually or ever come on very quickly, like within a few days?

3) Can the terrible body aches of sarc disappear almost completely in just a day or two, and return just as quickly?

4) Are any of the following symptoms associated with sarc: mouth sensitivity to spicy and acidic foods (slightly sore mouth interior w/o visible lesions or redness); small crusty bumps (almost invisible) at the corners of the mouth; shoulder pain with a kind of a “clicking sensation” when shoulders are rubbed deeply; clear to whitish mucous in the urine; increased sensitivity to smells, copious post-nasal drip?

5) If a patient has been diagnosed with lung cancer on the basis of a needle biopsy, what additional tests should be done to be sure it is not sarc? What kinds of lung cancer is sarc mistaken for?

Again, any help or insight you can provide will be most welcome. My e-mail address is eehunt@i.. .

All best,

Elizabeth H.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-21-05 18:39

Elizabeth,

Welcome to SarcInfo. Dr. Marshall has very little time these days to answer questions on the forums. I hope I can be of some help.

1) Yes, stress has been known to trigger overt symptoms of sarcoidosis. But the bacteria that trigger sarcoidosis have been present for a long time.

2) Yes, a first awareness of symptoms can occur suddenly.

3) Yes, sarcoidosis symptoms, especially those that come on suddenly, can disappear quickly. But the disease remains active and will resurface eventually.

4) Since sarcoidosis is a systemic disease that can affect any part of the body, all the symptoms you mentioned can be due to sarcoidosis inflammation. Sarcoidosis also caused symptoms of hypervitaminosis D.

5) Sarcoidosis is most often mistaken for lymphoma based on chest xrays. Biopsy rules it out. If you suspect Th1 inflammation and/or sarcoidosis in addition to or instead of cancer, ask your doctor to test your D-metabolites. This is as simple blood test but it requires expertise to assess so we recommend that you post the actual numbers on this website.

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Elizabeth Hunt (---.dial.indiana.edu)
Date:   02-22-05 03:45

Meg,

Thanks for your very prompt reply. I have a follow-up to #5. Dr. Marshall has mentioned in the discussion thread about cancer dx and sarc that needle biopsies can be unreliable because (and I am paraphrasing here) the granular structures can become broken and unrecognizable when removed through the needle. When that occurs, and a false cancer dx results, what kind of cancer does it look like?

Thanks again, I appreciate it so much,

Lissa
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-22-05 09:32

Lissa (Elizabeth),

Sarcoidosis is diagnosed by excluding other possible diagnoses. When a patient presents with symptoms (pain, fatigue, sweats, weight loss, etc.) and then a clinical evaluation doesn't provide an answer, a doctor may order lab tests and imaging of the area in consideration. This imaging may be of the chest, abdomen, or another area.

Viewed on imaging film, sarcoid granulomas cluster in masses resembling little tumors that could be cancer. There may be no way to differentiate sarcoidosis, cancer or something else, from imaging alone. Unless it is too invasive, (as in the brain or heart) doctors usually want to do a biopsy to evaluate tissue from the area they have seen on imaging.

If the biopsied tissue looks like non-necrotizing granulomas, when it is inspected under a microscope, then sarcoidosis will still be considered as a possible diagnosis. If, on the other hand, the granulomas are not recognizable due to the recovery method (such as the thin-needle biopsy as you mentioned), then the investigators will go back to/move on to other possible diagnoses, including cancers. So "what type" of cancer sarcoidosis might "look like" would depend on what area of the body is under investigation.

This is one reason why we suggest that the two serum D-metabolites be tested, both 25-D and 1,25-D. These test results are different for sarcoidosis and cancer patients, and they are not as invasive as some other testing.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Elizabeth Hunt (---.dial.indiana.edu)
Date:   02-22-05 13:44

Hi, Belinda--

Thanks very much for the info. Of course, I have about a million more questions, and I feel very much under pressure because I am soon due to start radiation for a lung tumor the doctor says is cancer, but I think may be sarc. It was dignosed by needle biopsy, but I have a CLEARlY systemic (and it seems to me, clearly autoimmune) problem just raging in my body that does not match cancer at all. I I would LOVE to talk w/someone and go over some of my questions, the history of my case, etc. Is there a phone line or anything? I am a bit desperate and so glad I found this forum, but being a newbie w/o much time, I don't know how to get all my questions answered the most efficiently.

Any advice appreciated--thanks again,

LISSA
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-22-05 19:00

Lissa,

Have you talked with your doctor about testing for D-metabolites BEFORE you start radiation? This test takes at least a week to get back from the lab so I encourage you to contact your doctor asap. Also, read the instructions carefully to prevent lab error.

It isn't possible or appropriate for us to challenge the results of your biopsy. But a simple blood test (the D-metabolites) which reveals very different numbers in cancer versus Th1 inflammation would give you the information you need to continue to dialogue with your doctor before you decide on a treatment option.

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Sherry Cook (---.harmonicinc.com)
Date:   03-03-05 08:16

Signature: Dx 12/04 via Gallium Scan; CT scan reveals Sarcoid in liver, spleen and lungs. Started MP (Benicar q 8 hrs) with GP on 2/17/05. Started Mino 2/26/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62

Meg,
The doctors are now discussing how to biopsy me to see if I have cancer.

How would the D metabolites numbers look for cancer, versus
sarcoidosis?

Thanks, Sherry

Dx 12/04; started MP with GP on 2/17/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62 (normal range of 15-60).
Calcium at 9.6 (normal 8.5-10.5).
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   03-03-05 19:48

Sherry,

The 1,25-D is usually very low if you have cancer. What part of your body do the doctors want to biopsy despite your sarcoidosis diagnosis? How are you doing on the MP? Did you ask them what they think your odds are that a biopsy would be positive for cancer?

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Sherry Cook (---.109.22.131.ptr.us.xo.net)
Date:   03-04-05 13:44


Meg,
Thank you very much for your information and questons too. Knowing
that 1,25-D is usually low is some good news.
I am not exactly precise about what part of my body they might biopsy,
but a guess is the lung. As for how I am doing on the MP, I have been
taking Benicar since 2/17 and mino since 2/26 with only two feelings
of herx: one last Sunday moring (my left hip) and another one on
Wednesday evening (SHARP pain in calf). But I also realize I was
eating a food which might of raised the Vitamin D: the low fat
ice cream had whey concentrate. My last serving was Sunday,
2/27. So...it might take another week or so for all the Vitamin D
to disappear from my system, correct?
In terms of biopsy being positive for cancer, I spoke with PCP
who I like very much on Thursday afternoon. He thinks it is
sarcoidosis, not cancer, but they have no tissue confirmation.
He does not think a Bronchosopic procedures as certain as
another procedure which requires a night of hospitalization where
they guide tubes between my ribs. Sometimes the tubes leak,
he mentioned, so there is risk. In the meantime, I FEEL GOOD.
A little tired, yes, and certainly the "worried well", but able to do
anything I want.
I do confess to being adicted to computers, and even though I
wear my NoIr glasses and have the contrast turned down low,
I spend 9 - 10 hours per day in front of the computer. I limit
my sunlight, but occassionally go to the bank at lunch which is
a 20 minute exposure. I am "well covered up" though.
I am not sure why I'm not "herxing".
Thank you so much for your questions, thoughts, and ideas. I look
forward to Chicago.
Cheers, Sherry

Dx 12/04; started MP with GP on 2/17/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62 (normal range of 15-60).
Calcium at 9.6 (normal 8.5-10.5).
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   03-04-05 20:52

Sherry,

It sounds like you are having Herxheimer reactions and that means that you are responding to the Marshall Protocol. Since you have a doctor who is willing to prescribe a treatment that appears to be working for you and one doctor is confident that you do not have cancer, I hope you will ask some very pointed questions before you submit to any medical procedures.

The key question is how often does the biopsy reveal cancer under these circumstances? What will happen if you don't have the biopsy? How often is cancer suspected and then the diagnosis is sarcoidosis? How can you have cancer when your 1,25-D indicates active Th1 inflammation?

These biopsies are not as simple as described and they carry some risk. I think if the doctors thought there was a high chance of cancer, you would already have had the biopsy. Keep in mind that biopsies are the standard way of confirming sarcoidosis also so that prednisone can be started.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Sherry Cook (---.proxy.aol.com)
Date:   03-05-05 07:30

Dear Meg,
It is only one week before I can shake your hand in person, and say Thank You for all the help you have offered many many people.
My PCP has decided against a biopsy primarily because I feel well. I am able to work, play and love. Although I am the "worried well" with some understanding of this disease that too will be conquered.

The Pulmonologist who suggested a biopsy last Monday was apparently reading from the chest scan CT and they use boilerplate language. If no biopsy has been made, they must mention metastatic disease.

In the meantime, I will enjoy life. And see you soon! Sherry

Dx 12/04; started MP with GP on 2/17/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62 (normal range of 15-60).
Calcium at 9.6 (normal 8.5-10.5).
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   03-05-05 21:41

Sherry,

I'm so glad to hear that you won't have to undergo a biopsy. It sure pays to ask questions.

I'm looking forward to meeting you too.

Best,

Meg
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Sherry Cook (---.109.22.131.ptr.us.xo.net)
Date:   03-08-05 12:49

Meg,
I have obtained a copy of Alan Cantwell's "Cancer Microbe" and it is
very interesting. The book does have some flaws, in my opinion,
because I am not interested in his personal life. But the research
information he highlights is thought provoking.

He mentions there is a strong incidence of a sarcoidosis diagnosis
followed by a diagnosis of lymphoma.
Any comments? I also found articles dealing with this
topic on Medline.

Thanks in advance, Sherry

Dx 12/04; started MP with GP on 2/17/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62 (normal range of 15-60).
Calcium at 9.6 (normal 8.5-10.5).
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Sherry Cook (---.109.22.131.ptr.us.xo.net)
Date:   03-16-05 13:38


Meg,
I very much enjoyed meeting you in Chicago last weekend and sitting
next to you at lunch. And I still read your emails like they were
love letters; this is so important.

With your counsel, and the advice of my PCP, I avoided a biopsy
due to the CT chest scan of 2/14. It was decided to wait 3 months
and see if there are any changes.

I have been on the full MP since 2/26 and am starting to herx
quite tolerably. Faint, light headed, numbness in arm upon arising,
cough has increased, cold feet are sx to name a few.

What strategy should we use with the PCP for the 5/15 Chest CT
scan? Is three months too soon to think there might be a benefit
shown from the MP? Should I try and stall them, and ask for a
Chest CT scan later?

Thank you so much, Sherry Cook

Dx 12/04; started MP with GP on 2/17/05.

2/2/05 D Metabolites Vit D 25-hydroxy at 25 (normal range of
20-100) and Vit d 1,25 dihydroxy 62 (normal range of 15-60).
Calcium at 9.6 (normal 8.5-10.5).
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-16-05 19:42

Sherry,

Keep in mind that with Herxing, patients are likely to find that their blood tests and imaging temporarily get worse before they get better -- just as with other symptoms.

My CT showed improvement in my lungs after 10-11 months on the MP. If your physician insists on a CT after only a few months on the MP, then you must ensure that s/he has a good understanding of the Herxheimer Reaction and the fact that it can exacerbate any/all symptoms before improving them. This is not a sign that your disease is worsening, and the Herxheimer is necessary for recovery, since it happens in response to bacterial death.

You will have to see what you can negotiate with your physician, since s/he is responsible for managing your care. As long as you seem to be progressing well, they may be satisfied to wait and watch your progress on the MP.

Remember that you can encourage your physician to join the (private) medical professional forum at -> www.marshallprotocol.com. There they can freely discuss their concerns amongst experienced medical professionals. They can also call Dr. Marshall with a question at any time; his contact information is on all his published papers.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-31-05 09:41

Author: Serene Walker (63.251.168.81)
Date: 03-31-05 07:39

I was just diagnosed with Invasive Duct Carcinoma. However, I'm a sarcoidosis patient and my surgeon did not include this information when submitting my biopsy. When I later asked him why he had not, he said it would not have made a difference. The tumor is 3.3 x 3.1 x 2.7 cm (PT2), however, necrosis was listed as negative. My thoughts would be that if this were indeed cancer and of that size, there would be some necrosis. I'm probably in denial, but I am real concerned that I'm about to have a mastectomy and chemotherapy just because my test results were not tested correctly. Please advise.

Serene
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-31-05 13:59

Serene,

You didn't say how you were diagnosed with IDC, but due diligence would at least include discussing your concerns with the physicians who diagnosed you, and making sure they understand you have already been diagnosed with sarcoidosis. It is understandable that you want to ensure that sarcoidosis was considered a diagnostic possibility. On radiographic imaging, manifestations of sarcoidosis in the breast can look similar to carcinoma, so careful evaluation is necessary.

You might also want to visit your library to get the full text of these reports to share with your physicians:
Subcutaneous sarcoidosis mimicking breast carcinoma.
Subcutaneous sarcoidosis mimicking carcinoma of the breast.
Sarcoid lesion in the breast presenting as carcinoma.
[Breast sarcoidosis]

Best wishes,
Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Serene (63.251.168.---)
Date:   03-31-05 14:33

Belinda,
Thank you for your quick response. I found a big lump, had a mamogram, then a biopsy (entire lump removed). Thus arriving at a diagnosis from the Pathology lab as IDC. However, I did discuss this with the surgeon and he said sarcoidosis wouldn't make a difference anyway. Which really got me concerned. Thank you so much for your quick response and I will peruse some of your information when I'm not so stressed. Have a great day!
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-31-05 20:07

Serene,

I suggest you read through the other posts in this thread, and ask your doctor to order a blood draw to test your two vitamin D metabolites. Sarcoidosis patients abnormally produce excessive amounts of 1,25-D. Feel free to share the lab test results on this forum.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   03-31-05 21:54

Serene,

Do you have a copy of the biopsy report? You will want to know everything that it said! And, research it.

I had a breast biopsy based on an abnormal. I got a copy of the pathology, and when I read the report, it showed inflammation and histiocytes. There's another sign that they saw, and, I'm sorry, but it's not handy, and I don't remember the third one, but I put the three words into the "Google" search engine, and all of the top results that came back were about Sarcoidosis.

There wasn't a cancer diagnosis from the pathologist, but then there wasn't any diagnosis. Just what it wasn't.

I asked my pulmonologist if it could be Sarcoid, and he said "I don't think so." He listened to my lungs, and then looked back at the report and said, "Hmmm, there ARE histiocytes though." And that was the end of the discussion with him.

You definitely should have a copy of any tests done for your own files. And, especially biopsy results, so that you can discuss them with doctors more at their level. You want them to explain to you why they believe it to be the diagnosis that they've given you.

Remember that most doctors don't know much about Sarcoidosis, and even my pulmonologist, who SHOULD know more than most doctors, as pulmonologists are more apt to see someone who has Sarcoidosis... couldn't give me the information that an internet search engine did! Without my pointing out the "keywords" to someone, Sarcoid wouldn't have been considered at all.

I'm not saying to depend only on your own research about something as serious as this, but I hope that you will do enough research so that you can discuss it with your doctors on their level. Read the sites that have been listed, and compare the information with your report. Make sure that your doctor can explain the details of your biopsy report to your complete satisfaction.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Serene Walker (63.251.168.---)
Date:   04-01-05 08:09

Lottie,
Thanks. That is what I have been doing just looking up words. I found some inconsistancies in the report, so I did address them with my doctor and I also requested her to send a prescription to the lab to re-read my results taking into account that I have sarcoids. I used the information for how the test should be run, that was posted on your site. Although, I'm not sure that it will do any good because even though it was a sizely biopsy, it was discected into 11 pieces. Thank you again. You just empowered me to make them give me answers. Have a blessed day!

Serene
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-01-05 10:08

Serene,

I hope you have read through all the posts on this thread, because there is lots of information here that could be helpful. It should help you understand that hormone D (1-25-D) is usually high in Sarcoidosis and usually low in cancer patients. This should give you the motivation to ask your physician to test your two vitamin D metabolites. When the lab results come back, feel free to share the actual numbers on SarcInfo.com.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Linda Bockhold (---.nyc.res.rr.com)
Date:   04-02-05 07:54

My PC Doc and Pulmonary Doc referred me to an Oncologist last week after the DX of Lymph Node with Multiple Granulomas, Non-necrotizing and Hyalinized. AFB stain-neg, with Fungi Stain pending. The Oncologist sent me for blood work to rule out Sarcoidosis. The lymph node biopsy was "right parathyroid node", with pre-op Dx-Mediastinal adenopathy. I'm a 2X Breast CA survivor (87 & 91), had cellutilis of left arm in Jan 05 with underlying Sq. C.C. which was cut out and gone now. I don't have any S&S's of Sarcoid Process except a little tired and a slight cough once in awhile. The Pet scan lit up in all my lymph nodes down to my adrenal gland. The CT scan of abdomen was neg. for CA. Last year I was excreting calcium in my urine and became osteoporotic in the hips(I'm60), so the Endocrinologist put me on Potassium with 25 mgs. of Hydrochlorthiazide which has brought my bone density back up. I also take calcium with Vit. D and Fosamax for the bones. I've used Glaucoma gtts for the past 6 yrs. which is keeping my pressure stablized with no optic nerve damage on vision. I see the Oncologist in another 3 wks. What's your take on the situation? Looking like Sarcoidosis to you? Thanks, Linda B.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Linda Bockhold (---.nyc.res.rr.com)
Date:   04-02-05 13:15

Did you e-mail me with a reply?
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-02-05 17:24

Linda,

It is possible you have sarcoidosis. Sarcoid has been considered difficult to diagnose because it is a diagnosis of exclusion -- excluding all other possible explanations first. In addition, the patient history, presenting symptoms, pathology reports, lab test results, radiographic studies and other diagnostic test results must be assessed to arrive at a diagnosis. You can find several explanations about how sarcoidosis is diagnosed by using the search engine at the top left of this page. I suggest you enter two keywords -- sarcoidosis and exclusion -- in the search engine.

Our suggestions (beyond reading and searching on this website) would be:
1. Ask your physcian to order a blood draw to evaluate your two D-metabolites, which will provide some idea or your inflammation, and will give an idea whether you are dealing with a Th1 immune response.
2. Get a copy of the full radiology and pathology reports for your own files.
3. Sit down with a medical dictionary and look up all the words you don't understand.
4. Write down all the questions you want to ask your doctor at your next visit, as a result of this background work on your part.

You do have symptoms that can be indicative of sarcoidosis. You should do a search this website for the terms used in your post, such as PET scan, multiple granulomas, adenopthy and hypercalemia, for example.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Cecelia (---.dyn.sprint-hsd.net)
Date:   04-06-05 19:20

I had a punch biopsy to the rt. lung, nothing was found. The Pulmonoligist is setting me up for open lung biopsy within the next 5 days, is she suspecting cancer? Or is this precaution? My lung x-rays show numerous white spots from the top of both lungs to the bottom, the bottom is not as invaded as the top. There are no clusters, they are all individual.
I am also a heart patient and a pacemaker or defib surgery was set up until the chest xray with the spots. Do you think I will be able to get this procedure done, I have been offered no hope of it at this time.

Thank you
Cecelia
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-07-05 21:06

Cecelia,

Welcome to SarcInfo. An open-lung biopsy is a very invasive procedure that carrying with it all the risks of general surgery.

Many sarcoidosis patients were thought to have cancer initially. Doctors do like to get a biopsy for a definitive diagnosis. But if your doctor strongly suspects sarcoidosis, please have a talk with him about postponing the surgery untill you can get your D-metabolites tested.

This may be all the evidence you need that you have a Th1 inflammation. And that the safe, simple Marshall Protocol will help you recover. Your cardiac symptoms also point strongly to a Th1 inflammatory disease.

Let us know if you have any questions about recovering from sarcoidosis with the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com. (MP.com)

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: kim (---.hsd1.il.comcast.net)
Date:   04-12-05 16:18

Hi-

I am 27 years old and have recently been going through testing for "nodules" in my right lung. I have recently had a PET scan that showed these nodules as well as two areas in my right hilum. There were also areas of concern in my spine. My doctor once spoke of Sarcoidosis but has not recently. He is currently determining which type of biopsy will be better. He seems to want to do a needle biopsy. I don't even know if I should be asking about the possibility of sarcoid, this has all happened in such a short time and my research is lacking. I want the best results from my biopsy and am obviously scared to death that this will be cancer. Should I be talking to him about Sarcoid and what should I be asking?

I guess I should say that I have no symptoms of any kind. I feel completely healthy, other than my worries and fears.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-13-05 00:36

Hi Kim,

Welcome to SarcInfo. Many of us got a tentative cancer diagnosis before we were diagnosed with sarcoidosis. Most doctors still think you need to confirm sarcoidosis by biopsy. That is the most definitive diagnosis and because the standard treatement, prednisone is so toxic, they like to be sure with a biopsy before they treat.

But sarcoidosis inflammation can now be diagnosed with a simple blood test and then treated with the safe and simple Marshall Protocol.

No matter what kind of biopsy your doctor decides to do, it is more invasive than a blood test, may not be definitive and isn't necessary to treat sarcoidosis inflammation.

Since your doctor has suspected sarcoidosis in the past, I imagine he's done an ACE blood test. Perhaps it came back normal, as it often does, and he dismissed sarcoidosis as a possibility. I hope you will insist on the simple D-metabolites tests before you consent to something more invasive. When you get the results, be sure to post them on the website because they can be abnormal even when they are within the lab range.

Good luck,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Maur (---.in-indianap0.sa.earthlink.net)
Date:   07-06-05 20:59

Hello,

September of 2004 I had a lump on my neck and after a ct scan which showed goofy things within the mediastinal nodes, the spleen and the liver I was told that I needed a biopsy. The biopsy was done on the neck lump and concluded that I had Hodgkin's Nodular Sclerosis stage IV. I ended up going through 6 cycles of treatment with ABVD for a total of 6 mos of chemotherapy. It was not a good experience. In November of 2004 my ct scan showed remarkable improvement, it was FREE of any signs of cancer after only 3 treatments! My oncologist was extremely surprised and we were all happy. I completed the remaining 9 treatments over the course of the next 4 mos. After treatment ended, I had a pet scan which revealed "activity- hot spots". We were all shocked, I was depressed and stunned that the cancer could possibily be back. They wanted me to wait 2 mos and then repeat the pet scan. Two mos later it shows activity again, this time increased activity. I was preparing for a bone marrow transplant. Again, this was a difficult time. My oncologist wanted me to get another biopsy. So, I had a mediastinoscopy of the nodes. The report came back as NO SIGNS OF CANCER!! It did show granulomas and necrosis. I was diagnosed as having Sarcoid at that point. Needless to say that makes me VERY happy... but, very concerned.... DID I HAVE HODGKINS TO BEGIN WITH?? I checked with my oncologist and her findings showed that the initial biopsy was reviewed by only one pathologist. It did not have a second opionion. I requested that my slides of the biopsy and my bone marrow biopsy slides be sent to a leading cancer hospital for a second opinion. Only the bone marrow slides were sent. The bone marrow biopsy was clean, negative for Hodgkins.

Sorry this is so long... but I am wondering if anyone has experienced a misdiagnosis as having Hodgkins when it was really sarcoid?

Thanks for your time,
Maureen
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   07-06-05 21:40

Maureen,

Welcome to SarcInfo.

Yes, other people have had a misdiagnosis of cancer when they have in fact had Sarcoidosis.

I know that you are happy that you don't have Hodgkin's, but I hope that you will read the information on this site, starting with the patient tutorials, at the upper left of each page of SarcInfo. Sarcoidosis is a systemic disease, and it can affect any and all of the body's parts. We now know that Sarcoidosis is caused by cell wall deficient (CWD) bacteria which have not only learned to hide from but to live within the immune system that is supposed to be killing them.

You may be offered Prednisone or other immunosupressants to treat it, they will only shut down the immune system and allow the bacteria to multiply. When you have symptoms, it is a sign that they have and/or are causing damage to your body.

Sarcoidosis does not go away on it's own, and it causes a dysregulation of vitamin D in the body. In order to start feeling better, it is very important that you avoid vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. READ the labels! They're adding it to many foods… including some brands of orange juice and bread.

You also need to avoid sunlight, and bright lights. The windows in your home must be covered and if you go outside you need to cover up completely. That includes long pants, long sleeves, scarf, hat, and gloves. You should also be wearing NoIR sunglasses inside and out.

There is a lot of information at this link, about Avoiding Vitamin D and Sunlight, on our sister site Marshall Protocol.com

I hope that you will learn enough to help your doctors learn about this treatment and convince them to help you defeat Sarcoidosis. Many of us have had the most success with our Primary Care Physician being open to helping us with the Marshall Protocol.

I will be sending you additional information by email. Please feel free to ask any questions you may have.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Maur (---.mo-stlouis0.sa.earthlink.net)
Date:   07-07-05 19:20

Thanks for the reply. I was treated for Hodgkins with 12 treatments of chemotherapy. I was treated for 6 mos!!! I am not sure if I truly had Lymphoma and recently sent the biopsy slides for further evaluation AFTER the fact. Of course I realize that Sarcoid is not something to cheer about getting, however, neither was the Lymphoma and frankly Sarcoid sounds better to me. What do you know about the correlation between Sarcoid and Lymphoma's? Do you know of any false diagnosis of Lymphoma when in fact it was Sarcoid all along? Please drop me an email or respond here when able. I appreciate this forum and the ability to find out more here.

Fondly,
Maureen
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Maur (---.mo-stlouis0.sa.earthlink.net)
Date:   07-07-05 19:22

By the way Lottie.... I'm a nurse also!

 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   07-07-05 20:09

Maureen,

If you go to the top of the messages, you will see that there is a search feature for SarcInfo. You will get many responses to “lymphoma” if you do a search. Many people have been diagnosed with lymphoma when it turned out to be Sarcoidosis.

When I first learned I had Sarcoidosis, I read everything that I could about it. In 1999 it seemed pretty grim to me. I was either going to stay the same, or ultimately get worse along the way. I felt that lymphoma might not have been such a bad thing. With lymphoma, I had a chance to get well, or I would at least go without possibly suffering for decades. I was short of breath, had no energy, my body ached all the time, and most of the time, when I was up, I would come close to passing out. I ended up on Prednisone which helped me feel better for a while, at least I could move around without passing out. But it did little for the fatigue. Over the years, I saw no hope in sight that I would ever feel “normal” again. I rarely returned to the internet because most of what I read was the same, and when I read the boards, it was only people sharing their latest symptom that had showed up, and/or how much worse they were. All I could see was a life of getting worse. My goal at that point was to outlive my mother, for her sake.

When the shortness of breath began to show up again, and I learned that the inflammation in my heart had returned. My doctor sent me to the internet again when the cardiologist didn’t seem to wish to be involved with my care (he wouldn’t return my doctor’s calls), and I found this site. It was filled with hope. Everything made sense. And, as I’ve proceeded through the MP, everything has happened just like it said it would.

I know that you’re dealing with the fact of a probable/possible misdiagnosis. I do hope that you will spend most of your time reading the information about Sarcoidosis. That is the diagnosis that you have now, and it can be a deadly disease. Reggie White died of it at the age of 42. He had undiagnosed cardiac involvement. The sooner that you get on the MP, the sooner you will get well without further damage to your body. Many of the various symptoms will only show up as the bacteria have caused damage to organs.

It's good to know that you're a nurse. It should make reading the information easier to understand. Many health care workers come down with Sarcoid.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Maur (---.in-indianap0.sa.earthlink.net)
Date:   07-08-05 08:48

Thanks Lottie. I appreciate your time and replies.

WHy do you think that many health care workers come down with sarcoid? I've heard that also, but just wondering...'why'? (And I bet everyone else is also). Again, thanks!

Maureen
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   07-08-05 09:06

Maureen,

There are a lot of possibilities that I know Dr. Marshall is looking into. I also know that he will share the information that he's learned when he has a good idea why some people seem more apt to come down with it.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   07-08-05 09:18

Maureen,

The logical reason that healthcare workers have a higher incidence of sarcoidosis is because they are exposed to more pathogens than the average person. Please see:

CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL

Best,

Meg

P.S. When you have a minute, please add a signature line. This data, which will appear each time you post, greatly helps the moderators to answer your questions.

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-04-05 09:04

Here's an interesting report of a case of sarcoidosis misdiagnosed as recurrent endometrial cancer. You need to know this happens.

Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Diana (---.rockdale.tx.cebridge.net)
Date:   11-08-06 14:40

First time to your site. It is very helpful. My friend (age 70) jsut had surgery for carcnoma cancer. They removed his lymphnodes under his right arm. This is after his dermatologists removed a tumor from his back. He still had "chest pains", fatigue, poorer vision and other symptons mentioned in your reports. After further testing and day surgery, he is diagonosed with scardoidosis and was recommended to see a rheumotologist or an internist. After researching the internet to find a doctor that knows about this disease, we have been unable to find one near our area. Please help us find a doctor that understands this disease in centrql Texas.

He had his cancer surgery in Scott & White Hospital, Temple, Texas. This is an excellent hospital that my friend feels comfortable in but I am not sure of how to find out if they have a doctor that is qualified or even interested in this disease. He just found more lumps under his right arm near where they removed the lymph nodes recently. Also, he has a hard time breathing and hurts all over. Please respond.

Should he cut out all Vitamin D products?
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   11-09-06 03:57

Diana,

Welcome to SarcInfo. How kind of you to do this research for your friend. I have removed the contact information from your post, and SarcInfo software will not allow email addresses in the posts. Only the moderators and Administration can see your email. This is for everyone’s protection.

The first thing you should know is that there are very few doctors who know much if anything about Sarcoidosis, and even fewer who know about and/or are willing to prescribe the Marshall Protocol (MP). Most of us have found that our Primary Care Physician is more open to the MP than specialists are.

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

There is information at our sister site www.MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

The Marshall Protocol -- simple explanations

A note to all who may be reading:
We caution Sarcoidosis patients that Sarcoid can be misdiagnosed as cancer. Patients need to be their own advocate on this issue. This topic is covered in these threads:
Cancer Diagnosis in Sarcoidosis Patients

Explanation of Biopsy

Cancer and Th1 inflammation

There is a lot of information at MP.com and much more to the MP than avoiding "Vitamin D" in foods. I hope to see you over there.

Please register and ask any additional questions in our actively-moderated website at www.MarshallProtocol.com

POST REQUESTS FOR DOCTORS HERE

The more often that you post at that site, the more moderators and MP members will see your questions and concerns. That increases the number of people who may also be able to help you with their experiences, and expertise.

If you still don’t understand the answer to a question, or it hasn’t been answered after a day or so, you may ask it again on MarshallProtocol.com.

I will be sending you additional information in an email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Guldam (---.dsl.sntc01.pacbell.net)
Date:   12-10-06 20:55

Very interesting posts.

About nine years ago I was diagnosed with pulmonary sarcoid. I'd become short of breath and started wheezing. Went to my doctor several times but he couldn't find anything wrong with me. Finally I went to the hospital when I just about passed out while walking up a flight of stairs. I am a male and was 39 at the time. Did some Xrays, CT Scans etc, and finally had a biopsy through a broncoscopy. Was diagnosed as having Sarcoid. After a few months my symptoms disappeared. And after a year there was no evidence of sarcoid on xrays or on galium scans etc.

Fast forward to three years ago...
Had a nasty cold and throat infection. The throat infection did not want to clear up. Went to doc three or four times and had tonsils swabbed for strep. Negative. Finally saw my Pulmonary Doc. He took one look and turned white. Referred me to an ear nose and throat guy, who took one look and booked me for surgery. Had Tonsil removed, and biopsy showed that I had NHL Large Diffuse B Cell.

Had three rounds of chemo: Rituxan with CHOP and 18 rounds of radiation. I just celebrated my second year of completing treatment. So far, so good. There is no evidence of NHL. Keeping fingers crossed that it remains that way.

Guldam
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   12-11-06 02:53

Guldam

Welcome to SarcInfo. I’m glad that you have found this site. Sarcoidosis is a systemic disease that can affect any and all organs in your body. Sarcoidosis does not go away on it’s own, or with the standard treatments. The NIH ACCESS Study finds Sarcoidosis does not go away

The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

I hope that you have also read about the connection between Th1 inflammation (Sarcoidosis is only one of the Th1 diseases) and cancer. If you haven’t, read it, you should be aware that this also applies to you. It is possible that your cancer was a misdiagnosis, and that it was actually the Sarcoidosis reappearing.

We caution all Sarcoidosis patients that Sarcoid can be misdiagnosed as cancer. Patients need to be their own advocate on this issue. This topic is covered in these threads:
Cancer Diagnosis in Sarcoidosis Patients

Explanation of Biopsy

Cancer and Th1 inflammation

If you have additional questions please post your questions on www.MarshallProtocol.com in the **General Discussion of the Marshall Protocol** thread

I will be sending you additional information in an email.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   12-24-06 03:11

Post moved to appropriate thread

Author: tonyour (c-71-229-50-192.hsd1.ga.comcast.net)
Date: 12-23-06 13:26

my mother has suffered from sarcoidosis for years and not it has been at its worst. She was told by her Doctor that she develop bone cancer and it is spreading what are the treatments for this. Im a daughter that is looking for some support.
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: Lottie (---.proxy.aol.com)
Date:   12-24-06 03:19

Tonyour,

Our expertise is explaining the pathogenesis of Th1 inflammation and how to treat it with the Marshall Protocol. Sarcoidosis is only one disease that is considered to be a Th1 disease.

First you should realize that Sarcoidosis is a systemic disease that can affect any and all organs in your body. Many doctors consider Sarcoidosis to be “just a lung disease”. It is possible for Sarcoidosis to be misdiagnosed as cancer.
You should read information at our new site www.MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

And, we caution Sarcoidosis patients and their families, that Sarcoid can be misdiagnosed as cancer. Patients need to be their own advocate on this issue. This topic is covered in these threads:
Cancer Diagnosis in Sarcoidosis Patients

Explanation of Biopsy

Cancer and Th1 inflammation

I will be sending you additional information in an email. Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Cancer Diagnosis in Sarcoid Patients
Author: tonyour (---.hsd1.ga.comcast.net)
Date:   12-25-06 11:26

my mother goes back to the doctor in three months what questions should i ask because the doctors are saying she has cancer and indeed it maybe the sac what measures should i take to insure she is treated for sac and not cancer.
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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