Calling Sandy and other itp research experts

I'm on a Facebook itp board and there is a woman that cited an article from 2006 from Sweden that said autoimmune disorder patientsa are twice as likely to get nh lymphoma. They lumped a whole set of auto immune diseases in that small sample itp was listed as well. I had a consult w Dr Kuter as well as Cleveland clinic hem and the only time they correlated an increase was when immune modulators were used like cell cept. Anyways I think the board there is officially scared. Any input?

I have heard that lymphoma is more common for people with autoimmune disorders, yes. But! In all of my years here, I have never seen any of the regulars or any of the others here get that diagnosis. If it were that common, I'm sure we'd see more of it. I've been here for a very long time. I've heard more horror stories resulting from splenectomy and no one seems to be concerned about that.

A lot of the treatments can make people more susceptible to cancers. This is why over-treating is not good. Sometimes with ITP, we are in it for the long haul and you have to consider the big picture as well as now. People tend to look at the short term side effects and not so much at long term side effects. You're also talking about the heavy duty immunosuppressants which are not used very often. CellCept, Imuran, Vincristine, etc are the worst, and long-term steroid use comes in second, along with Rituxan. Many people are using these treatments sometimes when there is no real need, so that has to be considered when making treatment decisions.

Personally, I believe that you can't worry about something that may never happen. There are a lot of things that can go along with an autoimmune disorder, and most people do just fine and 'only' have ITP. Even if someone were to be diagnosed with lymphoma, it is treatable. My Mom survived NH lymphoma 20 years ago. Treatments are much better now.

One article from 2006 is not enough to get worked up over. Who knows what other factors might've played a role in the outcome.

Also, keep in mind that "twice as likely" sounds a lot more scary than it really is. If 1 out of 1000 people get lymphoma, then according to this one study 2 out of 1000 people who have an autoimmune disorder get lymphoma. IMO, not worth losing sleep over.

1 in 47 men and women will be diagnosed with non-Hodgkin lymphoma during their lifetime. It is surprising that there are not more people posting about it on this website.

If the study is correct, it raises important questions. Is the increased risk due to the autoimmune disorder itself or to treatments used to treat autoimmune disorders? Or, are they both caused by a separate factor in common?

Can anyone explain to me why it is that many of the medicines used to treat ITP are also used to treat nh lymphoma, including prednisone and rituximab, cyclophoshamide, methotrexate? Infliximab (Remicade), on the other hand, actually causes lymphoma as a side effect.

It makes my head hurt just to think about it!

We have had people here that have had lymphoma, but they developed ITP during or after being treated for lymphoma.

Rob, I believe that the treatments play more of a role of increased risk than ITP does. I'm sure there have been people diagnosed with lymphoma after having ITP but there could be several reasons. 1) Lymphoma was the primary underlying disorder that caused thrombocytopenia in the first place, 2) A person with ITP (regardless of treatments) has the same odds as someone without ITP to acquire lymphoma, 3) Treatments may play a role.

Some lymphoma treatments are also used to treat ITP because they target B/T cells which are somewhat responsible for both illnesses. A lot of the cancer treatments can also cause cancer....look what happened to Robin Roberts. She treated breast cancer and then a few years later was diagnosed with MDS as a result of that treatment. As Tamar said, I don't think this is anything to lose sleep over, but it is a good topic to discuss because maybe we need to be a bit more careful with treatments here. It is a very fine line because these are not easy decisions. Risk bleeding or raise your long term risks. I've seen some people who were definitely over-treated and I can't believe what I see at times. People who are getting maintenance Rituxan to prevent platelet drops is the one that gets me. I do not see a need to prevent a drop, especially if that drop may not occur for three more years. So they may have 12 Rituxan treatments that were totally unnecessary. If counts drop, deal with it then. Low platelets do not equal sudden death. So you're willing to raise your cancer risk to prevent a platelet drop? Makes no sense.

Everyone is too focused on normal counts and will do whatever it takes to get it. That is a very normal response but we also need to look at what we are putting ourselves through to get there. The specialists are saying 'below normal is okay' but very few people seem to be listening.

When I researched Rituxamab one of the long term possible side effects was lymphoma. No cancers ran in my family so that possible side effect didn't and doesn't worry me one bit!

I don't think cancer has to run in a family for someone to get it. Using any of these treatments in moderation though would (hopefully) not cause a problem.

My Mom had lymphoma in her 50's. No one in her family had cancer either. I'm sure I'm at risk because I have used Prednisone long-term, used Rituxan, was injecting Methotrexate and am now on Imuran. I can't think about something that may never happen though. And if it does, I'll deal with it then.

Sandi, how is the Imuran? Dr. Lieberman said it's a smart next treatment if Rituxan worked and you can't take it any more. Are you having tummy troubles, either end, with it? I assume you aren't taking it for platelets.
Erica

No, not taking it for ITP. So far it's okay because I asked to start low dose and work up. I'm only on 50 mg's. I was supposed to go for blood work monthly and if it was okay, up the dose another 50 mg's, but I'm about 3 weeks late doing that and am still on the lowest dose. Eventually it will be a total of 150 mg's. I'm not in any hurry to get there.