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Hello. I was diagnosed with Splenic Marginal Zone Lymphoma October 2008. First round of Rituxan Chemo February 2009. SMZL appears to be rare. Are there any SMZL patients in this group? I would appreciate chatting with you.
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Leon- I responded to you
Leon-
I responded to you here.
Ross
I have also been diagnosed
I have also been diagnosed with Splenic Marginal Zone Lymphoma in November of 2007. I am a Survivor.
what do you mean? are you in
what do you mean? are you in CR?
what stage at diagnosis? What treatment?
Has anyone taken rituxon a
Has anyone taken rituxon a second time with good results with the spleen reducing in size again?
although SMZL seems to be
although SMZL seems to be uncommon, you are not alone. I had the splenectomy 1st, before any other treatment. It was way to large to do anything else. I go in a couple of weeks for my semi annual CT... I hope that I'm still stable. I really don't want to have to have chemo again... I reacted to the rituxan and have get extra meds so it doesn't affect my heart. for me each infusion was an all day affair with the rituxan taking 6 hours and then another couple of hours for the chemo drugs.
I am not sure if youa re
I am not sure if youa re still looking on hee, but my husband was recently diagnosed and now we are where you were a year ago. We sould like to speak with other people witht he same diagnosis. How has your year been? Any side effects of having your spleen removed? You are the first person I have seen that had the splenectomy first and that is what they are recommending for my husband too. We are not sure because most people do the chemo first and then the spleen usually goes down. I would love to hear for you!
Hi Stacy - My husband was
Hi Stacy - My husband was diagnosed 3 yrs ago. He is "stable" at Stage 4 - its been about 18 months since his last chemo - still has HUGE spleen which is something he "feels"(eats smaller amounts), enlarged lymph glands - many- pretty bad (ALERT) blood counts - but is doing pretty well. Fatigue, malaise are ever-present, as is aching discomfort - soothed by our hot tub.
Please let me know if you want more feedback
Linda
I guess I should add, it took
I guess I should add, it took a while but we are really doing OK - adjusted to a different view of our life & future - but have finally come to terms with adjusted reality - enjoy every day, travel and less rigorous recreational activities - but still feel "lucky" - I think that it is important to know - the disease can be "managed" and lived with. We feel lucky to have each other and lucky that he is not "sickly". Most people comment on how good he "looks" - There are other chronic medical conditions that people live with that are much more painful or debilitating. Do not give up "hope" that there may be a "cure" in his lifetime.
His doctor is more inclined to treat "symptoms" than "numbers". SO as long as he feels OK - it is just "watch & wait".
finding others who "understand" is not that difficult - seems that cancer has touched most everyone through friends or family.
I was diagnosed in May 2010
I was diagnosed in May 2010 with a spleen as large as a ream of copy paper (I have the CT scan.) After three weeks of CVP-R chemo the onc said it has shrunk back to normal. I'm sure it shrunk a lot, but I don't think it was back to normal until 15 weeks when swallowing became quite easy again. My spleen must have been growing for years. My first post treatment visit is Monday.