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Platelets - is it wrong to worship them??

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

My platelets were at 18 when I was first diagnosed with marginal zone B cell lympoma on 4/13. Hard to believe it has only been a little more than a month ago! I'm being treated with Rituxan and Prednisone, nothing else for now because I also have ITP (an autoimmune disorder) that was diagnosed at the same time. The ITP makes CHOP or other kinds of more toxic chemo not an option for me.

I was in the hospital for nearly a month, because my platelets wouldn't budge over 20. After 6 Rituxan treatments they are now at 62, so that is a big improvement! I find myself obsessing about them, and feeling like I'm going out on a first date with tummy butterflies every time I go to the lab for another check. I don't think my oncologist was all that confident that Rituxan alone was going to have such a good effect, and she seems as excited about it as I am. It's so good to have some positive news at last. My hemoglobin and red blood cells are also up, although my white cell count is pretty sad, but hoping they will get with the program eventually.

Once the platelets get up into a more normal range I may end up with the more traditional chemo, or not, the ITP really makes things complicated. Without the Rituxan, not only do I not make enough platelets to begin with (because of the lymphoma), but my body destroys the ones I do make as soon as it detects them (because of the ITP). The concern is that if they take my immune system down to zero, the megakaryocytes in the bone marrow that make platelets won't come back, and then I'm in major trouble. Ugh. So many new vocabulary words that I never wanted to know.

Anyway. Just wanted to share that there was finally some GOOD news! :)

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I too was dx with marginal, stage 1, low grade B cell NHL. I was DX when my small bowel perforated in Sept 2009. My sub type is Extranodal marginal zone B Cell NHL. Stage 1, no
bone marrow activity. I was treated with Rituxan only in Dec 2009. Once weekly for 4 weeks.
So far I have no activity on 1 pet scan, and no activity on another CT, Pet Scan. I am
due for another scan in July or August 2012 to see if I am still in remission.

God Bless. Let the good news keep coming. Love and hugs Maggie

Avantgardener's picture
Avantgardener
Posts: 31
Joined: Apr 2012

Hi, Maggie - I have the same type of lymphoma that you do, but my bone marrow is about 75% taken over by lymphoma cells. When they take a bone marrow biopsy they try to get some liquid bone marrow and some solid material scraped from the bone (makes your toes curl up to think about it, doesn't it??). They couldn't even get any liquid marrow from me because there was so much cancer. Ugh. This is not uncommon with lymphoma though, and isn't necessarily as bad as it sounds, or if it were a solid tumor cancer, which so far mine is not. Everyone's situation is so different, even when the type of lymphoma is the same!

Thank you for the kind thoughts, and I'll be thinking of you too.

-Janine

jimwins's picture
jimwins
Posts: 2037
Joined: Aug 2011

Hi Janine,

Good news is always welcome and it's important to focus on the
positives! Thanks so much for sharing!

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