Thanks for all of your kind words and cheers for Dan and our family
We are nearing November, which is hard to believe. January 2010 (when Dan first went to the ER) seems half a world away, not eleven months ago! I keep count still, and Dan is +161 days (5.5 months) post auto- transplant. November 1st will be 8 months since his BMB post induction chemo showed remission. We go back for blood work mid-December. Until then, we pray to have happy, healthy, cancer-free, fun days with our family *hopefully soon expanding* More to come on that as it develops
Ten months ago today, we began our journey...although we had no idea what we were getting into! We showed up in our local hospital's emergency room unaware that leukemia was trying to kill my husband. Dan presented with signs of anemia (pale, dark circles, tired easily, shortness of breath after climbing the stairs, and a HGB count of 5.4) All of this was kind of rapid. He felt fine on Halloween and had a really good mountain bike ride that day. By Thanksgiving, he was still feeling *fine* but noticed he was a little tired from his work schedule. By the second-third week of December, we had decided to make an appt. with his primary physician (for Jan. 7th). By Christmas, friends that hadn't seen him in a while commented on how crappy he looked. The night we went to the ER, Dan was getting ready to work a cat-eye shift at his job as a pipefitter for the railroad. I basically forced him to go to the ER, because I knew something wasn't right. Neither of us had any clue it would be leukemia! It took a while to get the most accurate diagnosis. His blast count was only around 13% at his first BMB on 1/7/2010. While we made arrangements to meet the specialist, etc. Dan was given blood transfusions and monitored. By the time we met with the specialist on 2/3/2010 it had climbed to about 21% (results came 2/9/2010 and he was admitted on 2/15/2010 for induction chemo.) He was kind of teetering between an MDS and AML and orignially they thought he had CMML. More specialized testing confirmed AML, M4.
Right now, Dan is doing fantastically well. He's been back to work since July 12, 2010. He's hairy again, has a full & robust appetite, the energy that he's always had, he is on zero medications, his blood counts are all within normal range. He has his little battle scars...little marks from his PICC line insertion and stitches and the marks from his apheresis cathetar and stitches but one would never know to look at him that he was ever sick. His only residual effects so far are night time thirst and a little nudge of worry around BMB time. He receives a BMB every 4 months now and bloodwork every 2 months. I think i'm done posting on Dan's thread in "Blood and Marrow Stem Cell Transplantation" for a while but we both will continue to follow you all. Maybe someone new to this, maybe someone facing the same diagnosis, will read it and find some hope. I can tell you that until I found this discussion board, all I could find were scary statistics and outdated articles. This forum is real, live people...patients, fighters, caregivers, survivors. Everyone has a real story to tell. Everyone here is proof that each story may be different, but the goal is the same. Thank you all for your encouragement, kindness, hope, caring, advice, cheering, and hand-holding. I hope to be able to do the same
Overall, this is such an encouraging thread and it is an interesting protocol for those who meet the criteria cytogenetics-wise. I'm so glad Dan has realized such success and I hope you can all get on with your lives and leave this leukemia nonsense far, far behind you! Congrats on a journey well-traveled!
Thanks for keeping track for both of us - it was a surprise to learn that I was 6 months out as well - yoohoo!. I'm glad he's doing so well! I'm doing pretty good but my counts aren't going up like we would like. I will be having a 3rd BMB today and I hope everything looks good if not better. I did have a major fever not too long ago but it didn't last long, so I guess I picked up a bug. Keep the lead going for us!
I missed posting that yesterday was day +200 post transplant for Dan.
Also, December 1st was nine months since Dan acheived remission.
He has bloodwork on 12/15 (has it done every two months)
He has a BMB on 2/15 (has them every four months)
He has absolutely no side effects as of now.
great milestone +200 days!! It is wonderful and inspiring that you have put leukemia in the rear view mirror.
Since you are my guide stone in this process I do have a quick question for you. Do you know when or if Dan's aquired or adaptive immune system is back to normal. This is the antibody sytem that is mediated by B and T cells. This is the sytem that makes new antibodies to vaccines...
have a great holiday season
I pulled Dan's most recent lab results (10-13-2010). It looks like his overall lymphocyte percentage was normal in October and in August. It was low in June. So, it seems that his lymphocyte recovery was complete three months post transplant. All CBC counts were either normal or very close to normal in August. Everything was normal in October....the same with chemistry. October was five months post transplant. So far, Dan has been healthy and his body is responding well to the stuff we throw at him (kids with sore throats, sniffles, etc.) I'll try to get a better answer for you as to specific B and T cell recovery at his next visit next week.
Thanks for taking the time to investigate this. I was talking with an academic immunologist last week and she peppered me with questions about acquired immunity post auto transplant. When I aksed my MD contact via email she said
"The immune system does not truly come back for years after an autologous
transplant; but neutrophils come back by day +12-22, generally... that being
said, when more sophisticated testing is done of the immune system, it isn't
really normal for years. In terms of the lymphocytes, I am not sure which come
back first-- We pay more attention to the B/T cell distribution in allogeneic
transplants. So, off-hand, I can't answer that question." Kathy has an appointment with her Doc tomorrowo morning.
I already emailed him my questions but have not heard back from him, but I know he is busy as he just got back from the American Hematology meetings in Florida.
I am glad Dan and your family are doing well. Kathy has a CBC and MD appointment tomorrow so I will post after that. But for the most part she is doing well and her hair is coming back ( ~4 months)