Another CLL (Chronic lymphocytic leukemia) Patient Dies Disease Free from Complications of Her Treatment
I lost another friend to CLL: a kind and powerful woman who so loved her life filled with friends and strong family support and love. She was an important and passionate member of our local support group.
Too young, too alive to be gone so soon.
She was treated at the end at one of the world's best CLL centers, but that transfer of care from a community oncologist might have come too late.
When she passed on, her CLL was nowhere to be found, but her uncontrollable GVHD (graft versus host disease) from her transplant (her sister was the donor) killed her. GVHD can be so unpredictable and so relentless.
Yet another death by treatment.
Transplant is a very blunt tool with huge collateral damage, but when the disease is on the march again and has wised up from former chemotherapy so that it can no longer be lulled back to sleep with the usual drug combos, transplant may be the only option left that offers us another chance. I am glad it's available. It can be a life saver. Or not. Remember that I opted for one for myself almost 6 years ago. That's how this whole blog started.
The issue, however, is not knocking back the CLL. That we can do most of the time. The issue is healing the patient. That is where we fall short.
That is why I am pushing for new therapies.
That is why I am looking at preserving our immunity and our marrow.
That is why we need research to rebuild our damaged B and T cells.
The pain of these losses motivates what I do here on the blog and out there in the community. Most of the time, I feel so lucky to be able to do blog and share my story and ideas and interviews.
But sometimes, like today, it just reminds me of how vulnerable that we all are and how raw are our wounds .
Right now, once again, I will just want to stop and stoop my head and say a prayer for her family.
I am so sad.
I hate this cancer.
Too young, too alive to be gone so soon.
She was treated at the end at one of the world's best CLL centers, but that transfer of care from a community oncologist might have come too late.
When she passed on, her CLL was nowhere to be found, but her uncontrollable GVHD (graft versus host disease) from her transplant (her sister was the donor) killed her. GVHD can be so unpredictable and so relentless.
Yet another death by treatment.
Transplant is a very blunt tool with huge collateral damage, but when the disease is on the march again and has wised up from former chemotherapy so that it can no longer be lulled back to sleep with the usual drug combos, transplant may be the only option left that offers us another chance. I am glad it's available. It can be a life saver. Or not. Remember that I opted for one for myself almost 6 years ago. That's how this whole blog started.
The issue, however, is not knocking back the CLL. That we can do most of the time. The issue is healing the patient. That is where we fall short.
That is why I am pushing for new therapies.
That is why I am looking at preserving our immunity and our marrow.
That is why we need research to rebuild our damaged B and T cells.
The pain of these losses motivates what I do here on the blog and out there in the community. Most of the time, I feel so lucky to be able to do blog and share my story and ideas and interviews.
But sometimes, like today, it just reminds me of how vulnerable that we all are and how raw are our wounds .
Right now, once again, I will just want to stop and stoop my head and say a prayer for her family.
I am so sad.
I hate this cancer.
Labels: Blogging, Chronic lymphocytic leukemia, CLL, Death, GVHD, HSCT, New therapies, transplant
posted by Brian Koffman at
11:55 PM
3 Comments:
I hate this cancer too Doc. But thanks to you and others, I can carry on. On my 50th birthday I say,"thank you". I hope you are well and my sincere condolences for your friend. I believe I read the late Dr. Terry Hamblin said this was a war of attrition. We honor your friend by continuing the fight. What else is there to do?
Sorry for your loss Brian.
So sad when she almost got over that line we all dream of.
Keep up the good work
Michael and Jan Dublin
I had a CLL friend in San Diego who had aggressive disease, and who also had an allogeneic transplant from her sister. She lived a couple of years, but had terrible GvHD. She finally passed away from aggressive lymphoma.
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