Rituxan causing MDS

[Frankiesue71]

Hello,

I’m hoping someone can point me in the right direction on this… My mother died in July 2005 of a brain hemmorhage that was caused by MDS. Apparently the fact that her blood wouldn’t clot caused the blood vessel to rupture. She was actually at the hospital that day for a blood and platelet transfusion anyway, but there was nothing they could do… She was living with us at the time, so I guess that part was a blessing in disguise, because otherwise I would have come home from work and found her..

My question is-has anyone ever heard of MDS being caused by treatment with Rituxan? In late Fall 2004 she was in remission from Chronic Lymphocytic Leukemia, and they gave her the Rituxan to keep her in remisssion. Within about a month or so after the treatment, she started feeling tired and run down, and bruising more easily. She was officially diagnosed with MDS at Loyola in Spring 2005, and after diagnosis she only made it until that July. We were told it was the Rituxan that caused her immune system to crash..

She was actually being treated, but the treatments (and I can’t seem to remember what they were) weren’t working. From what I’ve read, I think she had an extreme case, because she was getting transfusions every other day. It all seemed to happen so fast, I had trouble remembering the names for things while it was going on. I should dig up her notes, she probably wrote down the name, I think it may have started with a C. The doctor said they would be able to tell after the first one or two cycles of whatever it was if it was doing any good.

I have wondered ever since if this was a known possibility/side effect of Rituxan, and if she should have been warned by her doctors, or if the drug company is aware that this can happen.

My mom was my best friend. I’m not sure what I plan to do with any information I get, but at the very least, I think other people should be warned before taking the drug. I just had what would have been her first grandchild 4 months ago, and every day I wonder how I can bring her alive for him as he gets older. I guess a girl always assumes her mom will be there to help her when she has her first baby, which unfortunately isn’t always the case.

Thanks to everyone for their time, and any help or answers they can provide.

P.S. Sorry this post is so long!

[Zoe]

I am so sorry to hear about your mother’s death. I am afraid I can’t answer your question, but maybe someone here can. I just felt very sad for you when I read this.

On a happier note, congratulations on your baby. What did you name him?

Zoe

[Frankiesue71]

Thank you for responding. We named him Seth Aaron, after my mom. I’m Jewish, and in certain portions of the Jewish religion, when a loved one passes away, you name a baby after them. Not neccesarily exactly after them, but at least using the first letter of their first and/or middle name (especially in this case, since I don’t think a boy would enjoy the name Sharon Arlene, which was my mom’s name!). In Hebrew Seth means appointed one, and Aaron means exalted.

I noticed reading this forum that most people seem to do much better, and hang in there quite a bit longer, than she did. She always had a good attitude about it though. Very matter of fact, she said she wasn’t going to let it take over her life. She just did whatever treatments the doctors recommended and tried to go about life as usual. I think it gave us a false sense of security, because she acted so normal; it made it easy to forget how serious what she had was.

I believe what she was taking was Procrit. The name rang a bell when I read it in other posts.

Seth is a very happy baby, so I think my mother is watching out for me! She made sure I didn’t get one that was colicky all the time….

Thank you again for responding. I hope you continue to have success with your treatment!

[Frankiesue71]

After reading more posts, I think she may have been getting Vidaza, after all. I think I blocked it all out! We had lost my aunt, my mom’s sister, in November 2004 to cancer. So by the time my mom was diagnosed, struggled for awhile, and then passed away, I was pretty burnt out emotionally….

[gj]

My sympathy on your mother passing.
If you’re still questioning the issue of the rituxan, I just came across a discussion from the LLS group. Seems rituxan has been around for about 10 years now. A good site to check out the discussion on rituxan is http://www.nhlcyberfamily.org/treatments/rituxan.htm There are some excellent research items there.

[Neil]

Am not sure about Rituxan specifically, but it is not uncommon for chemo patients to develop Secondary MDS or Therapy-Related MDS as a result of the chemo.
Not all chemo patients get it, but many do.
Secondary MDS is very difficult to treat.

[Author]

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