Comments on: Coming Up The Learning Curve

By: Bill Mishkin

Bill Mishkin — Tue, 17 Jun 2008 18:02:39 +0000

Chaya,

I can’t thank you enough for your [internet] presence, approach and info. It’s been enormously helpful for me in just ‘living with’ my wife’s cll. You and Harvey are truly extraordinary.

Bill M.

By: brian

brian — Sun, 27 Apr 2008 23:30:24 +0000

Chaya,
Glad to read the good news. And thanks again for the helpful updates
My transplant is now 2 months away. The pre transplant work up deserves some comment. It can be daunting. City of Hope wants me to have CT scans, bone marrow biopsy, 24 urine collection, blood and stool tests, arterial blood gases, pulmonary function tests, chest x-ray. echocardiogram, cardiac stress test and various consults with the dietary staff and the surgical staff (about a Hickman) as a starter.
But compared to the transplant itself, the prep will be a cakewalk.
Be well. Stay strong
Brian (another doc with CLL)

By: Chip

Chip — Sat, 26 Apr 2008 21:01:20 +0000

Bravo! Both of your are a continuing source of inspiration. Mind (and spirt) over matter. Of course such feats are possible!

Question: Can you make a few comments about those non-nucleated red blood cells in Harvey’s transplant?

Thanks,

Chip and Vera

By: Maddog23

Maddog23 — Sat, 26 Apr 2008 19:09:02 +0000

I am very happy to see such good progression. I wish nothing but good days for Harvey!

By: Rita Horwitz

Rita Horwitz — Sat, 26 Apr 2008 16:39:33 +0000

Chaya

I check your notes of progress on Harvey daily. You and Harvey are in my thoughts and prayers. I am so thrilled with his progress.

I am now on IVIG again. Because of your gentle coaching and pushing and my acting up or out (which ever it is.) I get it!!

Blessings,
Rita

By: Barry B.

Barry B. — Fri, 25 Apr 2008 22:56:00 +0000

Chaya,

I have followed your diary entries with considerable self-interest. I am in “recovery” at the present time from CLL. With a rituximab/Solu-Medrol infusion I have rolled the WBC back into the normal range with healthy ANC and rapidly improving RBC and hemoglobin. However, I am not willing to wait for a resurgence of CLL again, and your diary has been most helpful in understanding the statistics behind cord blood cell transplantation. I like the odds that you quote from MDA, one of the two places I have visited. I am currently on loan to Seattle Cancer Care Alliance for the remaining infusions and follow-up with Dr. D.M. However, given Hutch/SCCA’s current view of transplantations, I will be turning to MDA and DR. K for advice. I watched my mother die because she was afraid of undergoing a heart operation that could have prolonged her life by 10 years or more 40 years ago. I have no intention of waiting until I am a “basket case” for an attempt at a stem transplant. Keep up the great work; you and Harvey are a great inspiration that has given me the courage to think proactively about stem transplant. Harvey, keep getting better; you deserve it because of your courage and internal strength.

Barry

By: Chaya

Chaya — Fri, 25 Apr 2008 20:14:51 +0000

You are right, home made red blood cells are a whole lot better than transfused ones, even if every effort is made to use irradiated and leukocyte reduced blood products. Not to mention risk of iron overload problems in patients who get too many red blood cell transfusions.

Getting GCSF (neutrophil growth factor) shots each day until the ANC is respectable seems to be a good idea to me. But I am just as happy that the protocol does not use erythropoietin drugs (such as Aranesp, Procrit) to goose red blood cell production. There has been a flood of bad news about using epo drugs in cancer patients and we have been reviewing this on http://www.clltopics.org for several years now. Using red blood cell transfusions as a stop gap measure and waiting for local production of RBC seems to be a safer way to go.

Chaya

By: Doc with CLL

Doc with CLL — Fri, 25 Apr 2008 19:59:29 +0000

excellent summary; glad to hear that Harvey is doing so well (and, hopefully, Serena as well!).

One thing that everyone should understand is that transfused RBCs and platelets never work as well as those manufactured endogenously…largely due to “storage” related degradation. A rough rule of thumb is a 10% or greater degradation in numbers (and, likely, greater degradation of O2 carrying capacity) right off the bat with ongoing degradation. That’s why transfusions are only (albeit important) stop-gap measures.

By: chaya

chaya — Fri, 25 Apr 2008 17:03:39 +0000

Bruce:

Thanks for the update on your wife’s GVHD status. You are right, getting a stem cell transplant is not a quickie project, it takes long term commitment to getting healthy.

To answer Wayne’s question: as Bruce mentioned above, GVHD is considered to be less of an issue with cord blood, which is why it is acceptable to transplant patients in significantly less well matched HLA situations. For example Harvey’s cords were both 4 out of 6 HLA match, a far cry from the 10 out of 10 (or higher) matching mandated for adult donor transplants.

There are many theories as to why GVHD is less of a problem with cord blood. One of the more well accepted theories is that cord blood has higher percentage of T-regs (compared to effector T-cells) than adult stem cell collections. The higher proportion of T-regs is necessary in order for the fetus and mother to co-exist for the nine months of the pregnancy. The higher proportion of T-regs means early onset of acute GVHD is significantly modulated in cord blood transplants.

Tomorrow I will be publishing a full length article on the subject of GVHD, which will address this and many other issues related to the subject.

Bruce, best wishes to your wife. She is in good hands. Clive Zent is one of my favorite CLL experts, and I was very impressed by Dr. Hogan when I met him at Mayo several years back.

Chaya

By: Bruce

Bruce — Fri, 25 Apr 2008 16:31:42 +0000

Sounds like “Harvey” is doing great. Congratulations! My wife is back in the clink (albeit 70 miles south of you) for treatment of GvHD. She just passed the 2 year mark on her transplant which illustrates the cure is a long process. The good news is that there is absolutely no CLL present and her blood counts are perfect in all respects. The GvHD she faces only presents as a painful skin rash and shows no other organ involvement. The treatment is a series of full-body moist dressings. A steroid cream is applied and then the moist dressing. They alternate between moisturizer and steroid cream for the first 24 hours and then go to a 3-a-day schedule. After only 18 hours there is already a nice improvement. They will change her immune suppression from Cyclosporine to CelCept. They feel this will improve her situation.

We learned yesterday from Drs. Zent and Hogan that they are seeing an average of 3 years of immune suppression for patients who have undergone a mini allo transplant. I informed Dr. Zent of “Harvey’s” progress. He said a lot of his patients were keeping him up to date.

Of course “Harvey” will likely not face many GvHD issues. This is one of the many nice things about the cord blood transplants and something that really wasn’t available to us only 2 short years ago! I personally think those who are diagnosed with CLL today will face a greatly improved set of choices when the time comes to make major treatment decisions. In the case of my wife she had approximately 7 years between diagnosis and transplant. CLL treatments seven years from today will likely be a much different animal. Better results, less toxicity, lower mortality rates, and more complete cures are certain to be the norm.