Why aren't they studying XMRV and LYMPHOMA?

justinreilly

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From Cort's Blog (as pointed out by JT1024):

http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

Unsettling Associations: The Incline Village Cancer Cluster

Of all the problems associated with ME/CFS one would have hoped that the ‘Big C’ wouldn’t be one of them. But the evidence presented at the conference suggests that at least with this particular cohort of patient it’s a very real problem.

Dr. Peterson
got Dr. Mikovits, a cancer researcher, interested when he mentioned at a conference in Spain that he had nine patients with Non-Hodgkins Lymphoma (NHL). NHL strikes about 2 out of every 10,000 people in the US (0.02%) but a full 5% of Dr. Peterson’s Nevada cohort had developed it. Even more striking was the type of specific of type of lymphoma he was finding.
Mantle Cell Lymphoma is a form of non-Hodgkins Lymphoma (NHL) that is almost vanishingly rare. If my back of the envelope statistics are correct MCL strikes about 1 out of every 100,000 people …but thirty percent of Dr. Peterson’s ME/CFS cancer patients had it. That’s the kind of finding that will turn a cancer researchers head and it got Dr. Mikovits, a viral cancer researcher associated with the HHV-6 Foundation’s attention. She told me she knew right away that ‘that’s a virus’. She was soon off for the summer to Reno to look more closely at this cohort.

Incline Village Map Dr. Gagen, a biostatician was engaged to take closer look at this cohort. Was it real? Her presentation was fascinating. She began to work her way down her slides of the region. Yes there was a large cluster of cancer cases in the general area. But where exactly was it? She ticked down several slides narrowing the focus – and then there it was - one brightly highlighted section almost pulsing out at you – Incline Village. It was an eerie moment. Even she said she was surprised to see that location pop out so vividly.

(Most people in Dr. Peterson’s cohort do not have cancer but enough of them do have these rare cancers to make the group stand out. Dr. Peterson pointed out two patients in an early North Carolina cohort with this type of cancer but what about other physician’s patients? If they’re there we haven’t heard of them. At a recent seminar Dr. Peterson recommended that physicians with long-term patients screen them for cancer.)

The cancer subset was real. Now the search was on to find its cause. Dr. Mikovits, our connection to the National Cancer Institute, felt it had to be a virus. But which one? The WPI set out to find out...
[emphasis added]
 

camas

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justinreilly,

I'll have to dig out my old copy of Osler's Web. It was a rare Follicular mutated to Burkitt's that took my husband. I thought those from the Tahoe cohort were developing MCL? I didn't realize that some were developing Burkitt's too.
 

redo

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Why aren't they studying XMRV and LYMPHOMA?
I agree. Why aren't they.

The retrovirus HTLV-I can cause cancer. The retrovirus XMRV can cause ______.
We don't know, but we need more study on it.

The Snyderman study said that the Lymphoma risk is increased in CFS (link).
Another study from Sweden finds this about the lymphoma risk in RA. High rheumatoid arthritis activity was associated with a 70-fold increase in lymphoma risk. (link).
Another study has shown a link between lymphoma and MS (link)

All of these conditions are conditions where we have good reason to suspect that XMRV is involved. RA studies aren't here yet, but when they come I am sure that they too have XMRV to a large degree.

But that aside. What would be real interesting would be to know what happens to CFS/RA/MS patients when they receive lymphoma medicine. If they would improve from lymphoma medicine it could be a indication that the same mechanism is involved.

When RA patients receive lymphoma medicine they improve greatly.
When MS patients receive lymphoma medicine they improve greatly.
When CFS patients receive lymphoma medicine they... We don't have any big data groups on CFS patients receiving lymphoma medicine, but as for the three patients which have got it, three improved greatly.

A study of 30 have recently been finished. Half of them got placebo - half of them medicine. It will probably be published some time within a year.

I think there is a link. I think, and that's just my opinion; that XMRV as a virus inside the B cells can cause uncontrolled cell division (read: cancer). I think that what the treatment does is wipe out the B cells with the virus inside, get rid of (most of) the virus and the uncontrolled cell division problem is under control.

The immune system fights cancer every day (preventing it from happening). And if there is just small problems I think the body can keep it under control, but if it has got the chance to get "the upper hand" the cancer would win over the immune system...

If anyone has any thoughts about this, then please give your input.
 

redo

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I am rather optimistic about it. We've known for some time now (more or less) that lymphoma happens more frequent with PWCs. We don't know why.

If it's XMRV then we might have an angle at this...

And if XMRV can cause it, then I can guarantee that more dollars would go into research. Cancer research is a high priority. I think that the same medicine which makes RA patients improve, and make MS patients improve, would make CFS patients improve... If that's right, then it's great news.

I see what you mean about not wanting to worry about it though. I feel the same way. Don't want to worry, have enough to worry about. But luckily for me I can keep myself from doing so.
 

redo

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Take Cervical cancer for example. With that you more or less need to have the HPV virus to get it.
"Combining the data from this and the previous study and excluding inadequate specimens, the worldwide HPV prevalence in cervical carcinomas is 99.7 per cent. (link)"

It wouldn't be that off that XMRV could be the same for a subset of NH lymphoma. All of Dr. Peterson's lymphoma patients, that were tested, tested positive for XMRV. It is to be said that all of those also were PWCs, so it doesn't prove anything. But nevertheless, I think there is a link.

HTLV-I, which is one of the few retroviruses known to cause disease in humans has this for a full name: "Human T-lymphotropic virus 1". It's a retrovirus which can crawl into the T-cells of the body (link). It is believed that HLTV-I is the cause of T-cell leukemia.


Studies (albeit small) have shown that XMRV can live inside the B-cells. It wouldn't be that off to think that XMRV could cause a subset of the B cell lymphomas.

Double digits of the population is HPV infected, some get cervical cancer. It would be a fair estimation to say that some four to eight percent have XMRV. And most of them will never get NHL...
I think of this as an opportunity. If it's XMRV which is causing increased NHL risk (not proven yet), then it's handleable. And the most important thing; the CFS symptoms may go away with the same type of treatment.

I know this is speculating. But that's what I like most about discussion boards, the possibility to speculate and share ideas or theories about how the strings are attached. New possibilities arise often from thinking outside the box.
 

Chris

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There is a poster paper published by Snyderman, Lombardi, Peterson, F. Ruscetti, and Mikovits, among others, at the recent XMRV workshop, titled "XMRV: Virological, Immunological and clinical correlations in patients with Chronic Lymphocytic Leukemia and Mantle Cell Lymphoma," showing that in a very small group of CFS patients with these cancers XMRV could be detected in the tumor cells, and that treatment with antiretrovirals resulted in " decrease in infectious XMRV, inflammatory cytokine profile, and tumor markers correlate with clinical improvement following antiretroviral therapy." The text is available at Serg1942's first post in the thread "Int workshop XMRV pdf-smaller-free to copy and print" on p.3 of "XMRV Research & Replication" on this forum, if you follow the link and look through day 2. They are working on the issue! Now let them get some serious grants!
Best, Chris
 

alice1

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I`ve had large cell lymphoma, was treated with 3 rounds of chemo and radiation 13 years ago.
I was diagnosed with folicular lymphoma and have had it for 12 years with no treatment as its very indolent.
I had colon cancer with a colon resection(5 years ago) then a liver resection as it spread to my liver.(1 1/2 years ago)
I was diagnosed with EBV 24 years ago and Dr Klimas confirmed it with the bloodwork she'd done on me.diagnosed CEBV.
And I'm still here.I don't look back because there's no point.I will be having a conversation with my onc and Klimas about rituxim.I've read where some people do very well for a long period of time where as others had their symptoms come back after several months.
You'd think my docs here in Canada would be interested in the connection but they're not and I don't stop doing everything possible because of them.
Not everyone with EBV/CFS/ME will get cancer so please don't be frightened by my experience.I think I just wanted to share what I believe we're capable of accomplishing.So many of you have been bed bound for years,so many in pain for years and yet we're still here.I think it's time we congratulated ourselves for being as strong as we've had to be.And a prayer for those who just couldn't continue.We'll never give up as long as we have each other.
 

redo

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I am amazed at how much you've been through alice. Can I ask you a quick question?
How did you notice that there was cancer? (I am not asking because I get anxious or something, I am asking because it's very relevant :). I guess you had some symptoms, and then asked to be checked, but with the hoard of CFS symptoms it's easy to suspect that "it's just the CFS" and not something else...
 

alice1

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I found a lump on my upper and inner thigh(large cell) then exactly a year after that I found another lump on the opposite leg but in the same place.(folicular).I was feeling very decent at the time.
Usually a person will get folicular first then large cell can appear out of that. I believe I had the folicular but the larger cell manifested itself first.
As for the colon cancer I was having a difficult time going to the bathroom which was unusal for me so I had a colonoscopy.
 

camas

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Gosh, alice. You are a true survivor!

My husband had rituxan as part of his lymphoma treatment and had no side effects from it at all, unlike the rest of his chemo. I'm hoping it's something most of us could tolerate if it's found to be effective.
 

alice1

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Thankyou for teling me that cama, hearing your husband was good with it gives me more courage.lol.
I had CHOP for my chemo which was TOUGH I'd say.
Hope you hubby is doing well.
 

redo

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thanks for your answer alice.

The going of this thread brings me back to the first question. Why aren't they studying xmrv and lymphoma... Much points in the direction that the connection is strong.

Does anyone know of a NGO for lymphoma patients - which "fuels" or conducts research? If such thing is out there, then I think we should point out these connections to them... Chances are they don't focus on it now. If they are to find the answer to the NHL riddle, they need to find the common nominator(s). It might very well be xmrv...

Sending samples from 10 lymphoma patients, and 10 healthy controls to WPI or NIH would be a cheap and effective pilot study......
 

camas

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Thankyou for teling me that cama, hearing your husband was good with it gives me more courage.lol. I had CHOP for the my chemo which was TOUGH I'd say.
Hope you hubby is doing well.
My husband had hyper-CVAD +Rituxan. (Had to look it up since it's been almost five years.) He managed to get through all 8 rounds, but didn't make it. His was an extremely rare mutated Burkitt's which, from my research, no one has survived. Most make it two months from the time of diagnosis, he made it nine. If anyone could have beat it, it was him. I should point out that he did not have a CFS diagnosis though. Don't want to scare anyone unnecessarily!
 

alice1

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camas I'm so sorry! I can only imagine how hard that must of been.I hope you have some peace in your life now.
Redo when I was first diagnosed I told my doc that I had EBV and he said that the only cancer it caused was Burkitts.
Bull..
There was a study being done but I'll have to dig up notes to find who it was. I sent an email asking them to take me.
I'll get back to you.
 

camas

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camas I'm so sorry! I can only imagine how hard that must of been. I hope you have some peace in your life now.
Thank you, alice. It was really rough, as I'm sure you know from having battled cancer twice. I'm am at peace with the exception of wondering if my illness in some way (EBV? XMRV? EBV+XMRV?) contributed to his. I probably always will. I hope we'll be seeing some well-funded lymphoma studies soon.
 

alice1

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cama I was diagnosed 2 weeks after I was married.We split as he found it too difficult after 7 years but I know he's a healthy man.
I've been with my current man for over 14 years and he's very healthy as well.I just thought you should know this.
redo it was Dr Helen Heslop who was doing a study of EBV and Lymphoma..tomorrow I'll have the place where she was,is doing them.
My memory is crap and I have someone who helps by letting me use theirs.lol.
 

andreamarie

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camas, I am so sorry for your loss. i lost my brother to acute myoblastic leukemia forty four yrs ago. No one survived then. It's still the worst leukemia but there are survivors. My mother was told by some idiot doc that it could've been related to x rays she got when pregnant. My brother was thirty when he died. It haunted her for some time. I.D. researchers are looking for virus's causing cancer and have been for a long time. I discussed this with one of my doctor's who survived NHL. Another did not. Jackie Kennedy died of NHL and was part of an NIH study before it killed her.
I know i.d. researchers are looking for an organism that my contribute to Crohn's. I say contribute because they have already found three genes and will find more.
we've all lost people to cancer I suspect, but camas, please don't think your CFS had anything to do with it. only when a world famous oncologist spoke to her did she lose her sense of guilt.

oncologists will keep treating cancer patients no matter what the cause may be. i.d. docs don't want them. it's the i.d. researchers who will find the answer. e.g. an i.d. researcher, who won a Noble, found h.pylori caused stomach ulcers. gastros still treat them.
 

camas

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Thank you, andreamarie, for your kind words. I'm sorry to hear that you lost your brother at such a young age and that the doctor could have said something so insensitive to your mom. I agree that it will probably be I.D. doctors who figure out most cancers. There are already so many that have been traced to viruses. I hope XMRV brings us some answers soon on a number of fronts.
 

ixchelkali

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Hugs to each of you who have suffered, and are suffering, such losses. I'm very sorry for your pain. I hope that once they're through putzing around with how to design a reliable, standardized test for XMRV, that they'll start researching questions like this. I sometimes wish the researchers would spend some time reading through this forum, to remind them of the human lives behind the abstract questions they consider in the lab.
 
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The lymphoma connection is more frightening than my symptoms now. I'm from Incline Village, XMRV positive, and I have a liver and spleen full of tumors and a chest full of swollen lymph nodes. Docs thought I had metastatic liver cancer but I don't. However, it looks like I have a very good start toward lymphoma and that scares me a great deal. Not on any anti-retrovirals; my MD is concerned that it would just be a shot in the dark and do more harm than good. Waiting for the knowledge base to expand I guess.