Another newbie with quite a history

SO....To make this as brief as possible, I was diagnosed 20 yrs ago with PNH/Aplastic Anemia. With various treatments (ATG infusions and Solaris), I did quite well. Then 2 yrs ago, I was diagnosed with Angioimmunoblastic T cell lymphoma...had a sibling matched bone marrow transplant a year ago and doing very very well (even though I had every complication imaginable). Not only did the transplant cure my lymphoma, but it also took care of the PNH/AA...Wooohoo!!
All my cbcs returned to normal levels, but now it seems that I have ITP. My platelets have been typically 5k for the last 10 months. I was getting transfused weekly, but we decided to stop because it only boosts the plts for a couple days. Unless I'm traveling....We live in FLA and my children are both in college in CO, so we like to fly to see them as much as possible. I have been doing Nplat for 7 weeks without a response. I tried steroids for a few days...HATED the side effects (crazy witch) and didn't boost my platelets anyway. The next plan is to have an indium test to see if my spleen is the culprit. Then maybe try Rituxan. The concern is that my immune system is already compromised from the bone marrow transplant...We (my doctor and I) are worried that the Rituxan will suppress my immune system more and can end up getting bad infections that I can't fight. I am also concerned about the risks of the Rituxan medication, as I am very sensitive/allergic to many meds (including Benadryl). My question is this....Have the people that have tried Rituxan getting more illnesses/infections? How about those that have had a splenectomy? Has anyone in this group had a bone marrow transplant? My dr continues to remind me that I am not a pure ITP patient because of my condition post-transplant. Since I am feeling so great, I would rather not have any treatment. The only symptom I've had is some bruising at IV sites/blood draws. I also had an ear bleed, which cleared up without issue. The last question I am interested in...Has severely low platelets been an issue with travel? I know I have lots of questions...would greatly appreciate any feedback!!! Amy

Amy:

Most people do not sick more often with Rituxan, but it is an immunosuppressant. As far as reactions go, there are several hypersensitivity reactions that can occur. I've had one and it was not fun.

I truly consider splenectomy to be more of an immunosuppressive treatment than Rituxan. Another concern is that if the splenectomy does not work and you need additional treatments, you may end up back on immunosuppressants which will double your risk. Splenectomies are becoming an obsolete treatment for ITP and some of the top doctors don't recommend them any more. Having the Indium can determine where destruction is taking place, but even if it shows the spleen, that does not guarantee that it will work.

Bone marrow transplants for ITP are usually not considered. As you well know, the risks are high. Dying from ITP is rare and the literature shows that just as many die from infection as they do from bleeding.

As for flying, there are conflicting ideas about that, but one of the top specialists does not believe that flying with low counts will cause any harm.

You do have other treatment options to explore such as N-Plate or Promacta. If you don't have any symptoms though, not treating is an option. Platelet transfusions are not a recommended treatment option. They should be used for bleeding situations only. If you are not a true ITP patient though, you may have a much different circumstance than everyone else here in which case any advice we can give may not apply.

Thank you for the input Sandi! I know there were lots of questions so I'm sure confusing. One of my questions was does anyone get ITP after a bone marrow transplant like I did?
I really appreciate the fact about splenectomy, as it seems like my dr is encouraging me to consider. I'm also relieved to hear that people don't seem to be getting more frequent illnesses /infections after Rituxan. That seems like the best way to go for me.
However, I would MUCH rather not do anything sinc I'm feeling so well and not symptomatic . My hemotologist is very concerned about the risks of walking around with 5k platelets.? Should I be worried ?

Ps. I have been on nplat for 7 weeks - platelets still at 5k.

Have you been taking a larger dose each week while on Nplate? Sounds obvious but some doctors don't dose properly.

Amy:

I don't know how common it is to acquire ITP after a bone marrow transplant. I know a woman who had a bone marrow transplant because of Lupus. She had ITP before the transplant, but has not had problems with her counts since (it's been about 5 years). She would never have had one if she'd just had ITP, but she also had a clotting disorder and had multiple blood clots even with low platelets. There were other problems as well.

5k is a low count. Some people do fine with a low count, but some do not. I couldn't tell you if you would be okay long term. That is a decision that you have to make with your doctor. Most consider a count over 20k to be safe.

N-Plate can take some time to work and I think that might be your best bet right now. It has a good success rate and has caused remissions for some people. As Ann said, maybe you need the dose increased.