Sharing Our Stories
My post on the ACOR CLL blog:
This old school online community cancer source has been a life saver for me and many others
Friends.
Recognizing the value of the longevity stories, I thought it might be helpful if some of us shared an executive summary of our CLL journeys from which others can learn. The group is there to answer questions from like travelers in times of need, but it is also valuable to know some of the twists and turns others have negotiated that has lead to good and bad results.
I'll start the ball rolling.
Diagnosed almost 6 yrs ago at age 54 with swollen nodes and a very slightly elevated WBC. Bad prognostics: 11q del, unmutated, ZAP70 +, CD38+. Saw Kipps at UCSD and Rai at LIJ. My WBC counts rose slowly but my CLL quickly grew in my nodes and even a big beard couldn't hide the bulges in my neck. 1 year after diagnosis, I noted petechiae on my legs and found that I had single digit platelets from ITP. That was the first of 5 times in the hospital in < 1 yr with very low platelets.. Very scary times. Failed steroids, R, IVIG, and an emergency splenectomy. Finally the combo of Cyclosporin and Rituximab worked and also unexpectedly shrunk my palpable nodes, cleaned out my marrow and normalized my counts. Had a perfect match from Israel, so I had an early reduced intensity (FCR) allo-transplant July 1 2008 at City of Hope, but lost the graft, likely because I was too healthy from the lack of long term chemo pre-transplant. My CLL was back in 6 months (in the nodes first) and ITP was back in a year, currently controlled with my old friends R and IVIG and cyclosporin. The later is hard on my BP and kidneys, but it beats the alternatives. No infections, no anemia, no reactions, no other problems.
That's my story and I am sticking to it.
During all this I have walked my daughter down the marriage aisle, and am now expecting our first grandchild. Last week I said a final goodbye to my father. (It was not clear when I was diagnosed who would pass first) . We have traveled to Australia, New Zealand, China, Japan, and all over Europe and North America in several trips. I have been forced to redefine my career from a practicing MD to a teaching MD, a gratifying change. I enjoy every minute of life and put little off to the future.
Life is sweet. As someone said, if it weren't for the downside, and the downside is enormous, everyone would want cancer.
Please share your stories if you think this is a good idea.
We are all in this together
Brian
bkoffman.blogspot.com
Recognizing the value of the longevity stories, I thought it might be helpful if some of us shared an executive summary of our CLL journeys from which others can learn. The group is there to answer questions from like travelers in times of need, but it is also valuable to know some of the twists and turns others have negotiated that has lead to good and bad results.
I'll start the ball rolling.
Diagnosed almost 6 yrs ago at age 54 with swollen nodes and a very slightly elevated WBC. Bad prognostics: 11q del, unmutated, ZAP70 +, CD38+. Saw Kipps at UCSD and Rai at LIJ. My WBC counts rose slowly but my CLL quickly grew in my nodes and even a big beard couldn't hide the bulges in my neck. 1 year after diagnosis, I noted petechiae on my legs and found that I had single digit platelets from ITP. That was the first of 5 times in the hospital in < 1 yr with very low platelets.. Very scary times. Failed steroids, R, IVIG, and an emergency splenectomy. Finally the combo of Cyclosporin and Rituximab worked and also unexpectedly shrunk my palpable nodes, cleaned out my marrow and normalized my counts. Had a perfect match from Israel, so I had an early reduced intensity (FCR) allo-transplant July 1 2008 at City of Hope, but lost the graft, likely because I was too healthy from the lack of long term chemo pre-transplant. My CLL was back in 6 months (in the nodes first) and ITP was back in a year, currently controlled with my old friends R and IVIG and cyclosporin. The later is hard on my BP and kidneys, but it beats the alternatives. No infections, no anemia, no reactions, no other problems.
That's my story and I am sticking to it.
During all this I have walked my daughter down the marriage aisle, and am now expecting our first grandchild. Last week I said a final goodbye to my father. (It was not clear when I was diagnosed who would pass first) . We have traveled to Australia, New Zealand, China, Japan, and all over Europe and North America in several trips. I have been forced to redefine my career from a practicing MD to a teaching MD, a gratifying change. I enjoy every minute of life and put little off to the future.
Life is sweet. As someone said, if it weren't for the downside, and the downside is enormous, everyone would want cancer.
Please share your stories if you think this is a good idea.
We are all in this together
Brian
bkoffman.blogspot.com
Labels: Stories
posted by Brian Koffman at
1:32 AM
4 Comments:
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.
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!!
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.
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.
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.
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.
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?
Thanks so much. I enjoy reading and learning from your blog about your adventure(s).
Juliahna
ohcprez@aol.com
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.
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