tag:blogger.com,1999:blog-2741672436160438708.post710916850117210739..comments2024-03-26T12:50:32.070-07:00Comments on Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman: Sharing Our StoriesBrian Koffmanhttp://www.blogger.com/profile/13250684684103918493noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2741672436160438708.post-52494962595989883942011-08-19T10:45:02.562-07:002011-08-19T10:45:02.562-07:00My husband, who is 52, was diagnosed 5 years ago w...My husband, who is 52, was diagnosed 5 years ago w/ CLL, 13q, ZAP+. He went through 1 cycle of FCR and developed autoimmune hemolytic anemia. They thought the second cycle would wipe out the AIHA, but it only became worse. All total, in the past two months he's had over 20 units of packed red cells, one infusion of IvIg, and his first infusion of single therapy Rituxan. He has three more to go, and will be changed to PCR when treatment resumes. His Hgb is, so far, holding steady in the upper 8s. It has been as low as 4.3 (two weeks ago) and he suffered a mild heart attack because of the drastic and quick drop in his Hgb. He is pretty much wiped out from all that's happened - his body has really taken a beating. We're hoping he'll regain his strength and come through the remaining cycles of chemo with flying colors.J. Beanhttps://www.blogger.com/profile/04090677828971115457noreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-18254981940364766332011-07-20T06:33:35.748-07:002011-07-20T06:33:35.748-07:00Hello Brian - I've come across your posts on t...Hello Brian - I've come across your posts on the bmt list and have followed them to this blog, reading from time to time for a while now. I keep coming back to see what's up with your counts, etc., as I also have counts that continue to be somewhat of a conundrum 2 1/2 years post transplant.<br /><br />There've been times when the reason for my low hemoglobin, whites and platelets has been clear and understandable. However, for most of the last 1 1/2years, the cause/reason has not been able to be named, defind. All three numbers have been unable to normalize, with sometimes hemoglobin as low as 6 (maybe lower?) and I was admitted when my platelets were at 1 in May. <br /><br />Rituxan worked for me the first time around, just 6 months after my transplant for AML and when hemolytic anemia and itp were able to be diagnosed. <br /><br />Since then, nothing has had a lasting positive effect - not Rituxan, IVIG, cyclosporin or prednisone. Taking out my spleen has been under dicussion for some time, and now that we see nothing else seems to be working (and thus I'm a regular recipient of generously donated platelets and less often blood), I'll meet with a surgeon tomorrow. Of course if it works, great! It looks like for you, taking out your spleen did not resolve the platelet issue. <br /><br />If you have any thoughts about this long comment of mine, please let me know. Are you using the three meds (R, IVIG and Cyclosporin) simultaneously or rotating them? Any insight into why removing your spleen didn't resolve the issue for you?<br /><br />Thanks so much. I enjoy reading and learning from your blog about your adventure(s).<br /><br />Juliahna<br />ohcprez@aol.comJuliahnahttp://www.caringbridge.org/visit/sharonjuliahnanoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-74686341870044808732011-07-03T05:45:14.224-07:002011-07-03T05:45:14.224-07:00My husband Paul was Dx with CLL March 2008. That ...My husband Paul was Dx with CLL March 2008. That same year starting in Sept. he had PCR, due mostly in part to a low H & H, 6.2 and 20, at that time his nodes were in acceptable range. He received a partial remission but within 11 months the nodes flared up...mesenteric nodes >6, although his labs were perfect. He received Bendamustine and Rituxan this past Sept. for 6 months and had a great response. Due to his remission being so short the first round, he was encouraged to have a SCT. Today Paul is T +12, having received a double umbilical SCT on June 21st. At this time we are waiting for his counts to come up and engraft. My prayers go out to all of you who have had to go through cancer journeys, either thenselves or for loved ones. Thank you Brian for connecting us all together!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2741672436160438708.post-87777580073869211532011-07-02T14:23:08.972-07:002011-07-02T14:23:08.972-07:00I'm also one of those that have had cancer. S...I'm also one of those that have had cancer. Stage 1, ovarian cancer, 4 years ago. I know.....they tell me that I am one of the lucky ones to find it at stage 1. What? lucky to have cancer. Thank God for my Dr. G. Patel at St. Jude Fullerton. She has taken me through this journey, and I don't know what I would have done without her.......she is a fantastic Dr. That is what it is.......my journey through life. We don't know what God is going to put before us. My favorite saying is "It's ALL going to work out, because GOD is at work. Dr. K, thanks for letting me share.Anonymousnoreply@blogger.com