Good evening all. Here is a bit of good news regarding Peter's courageous battle with his second bout with leukemia . His positive attitude is indeed wonderful. Regards to all Bill
-----Original Message-----
From: John Duncan <rowtigger at aol.com>
To: Heather Wildi <hewildi at gmail.com>; Roslyn Manchee <roslyn.manchee at gmail.com>; Ellen Talbott <eftalbott at verizon.net>; Beverley Manchee <grab.man at sympatico.ca>; Pat Farrell <patf4444 at live.com>; Don Grant <dgrant471 at sympatico.ca>; Alice Waddington <awaddington at mindspring.com>; Bob Wood <knockonwoodsr at gmail.com>; Bill Buck <billyeightbits at aol.com>; Karl & Shirley Wildi <kswildi at gmail.com>; June Wood <dancingjune at verizon.net>; Merrily Hardisty <MSHARDISTY at aol.com>; David Grant <vacuna5471 at hotmail.com>; Sue Huguely <shuguely at aol.com>; Bob Devaney <bobdevaney at gmail.com>; Dorothy Whalen <dotwhalen at gmail.com>; Daniel Grant <dag5271957 at gmail.com>; Richard Buckley <ricbuckley at gmail.com>; Barb Toivanen <btoivanen at rogers.com>; heidi.biberhofer Biberhofer <heidi.biberhofer at telus.net>; Deedee Wilson <dee2wilson at yahoo.com>; Joan DeCain <Jcdecain at aol.com>; Devra Glowinski <devraglowinski at gmail.com>; Laurie Coughlin <LaurieCoughlin at aol.com>; Christopher Wilson <christopher.wilson at lasalle.com>; Cathy Eplett <dreplett at gmail.com>; Em Sutton Rusch <emsrusch at gmail.com>; Judy Buckley <buckleyjcp at hotmail.com>
Sent: Thu, Mar 17, 2016 3:48 pm
Subject: Fwd: Peter's Lymphoma
Here is an interesting addition regarding Peter's health. He seems excited with the news and earlier start to his treatment.
John
Begin forwarded message:
From: Peter Duncan <sailfaster at aol.com>
Date: March 17, 2016 11:19:03 AM EDT
To: Peter Duncan <sailfaster at aol.com>
Subject: Peter's Lymphoma
March 17, 2016
Hi All,
A quick update. I was selected by the trial randomization to receive donor cells from unrelated umbilical cords (thanks to my kids for volunteering, but they get a pass this time). With this decision, the schedule will move up a few days. I will begin the transplant process March 29 and the actual infusion of new marrow cells will take place on April 5.
All the best,
Peter
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March 15, 2016
Hi Everyone,
Sorry for the long delay, but I’ve been waiting for some definitive news before I give you an update on my health.
Since I wrote last, I have had more chemotherapy both of the usual kind (intravenous) and in my spinal fluid. These treatments have made for some rough days and periods where my immune system is so compromised that I’ve had to stay away from public places (stores, restaurants, planes and the public in general). Other than a few headaches and loss of hair the side effects have been small and the chemo has once again resulted in reducing my lymphoma to undetectable levels (what the doctors call “total remission”). I’ll remind you (as the disease has reminded me) that this does not mean the cancer is gone, but only undetectable (below about 1 part per 100M cells). Chemo therapy alone will never eliminate blood born cancers of this sort, the only true long term “cure” is to have an immune system that will take out rogue cells that are made daily as part of the 3 billion cells your blood system makes each day.
My treatment plan from here out is to give me a new immune system. This process will begin about April 6 with days of high dose chemotherapy and radiation to eliminate my existing immune system and all the cells (in my bone marrow) that make it…. then after a week I will be given new immune system cells (a “bone marrow transplant”) which should grow and develop a new immune system for me. It will be a totally new immune system (as if I was a baby) and it should see the remaining tumor cells as foreign and take them out. Of course since it is not my natural immune system, it will also see my own body cells as foreign and attack them. The doctors will have to manage this balance to my benefit over several months. Eventually the new immune system will get used to my body… my blood type will become that of my donor, and I will need to get all of my childhood immunizations all over again! It will be an amazing ride on some of the most advanced medicine available today.
Many have offered to be donors or have asked who my donor will be. Whereas years ago a “perfect” match was desired to reduce the chance of Graft v. Host disease (GVHD), they now have learned much about how to temporarily suppress the immune system as it engrafts and acclimates to the new body. This has opened up the possibility of using “half-match” donors… All three of my children qualified and agreed to be donors. I have also agreed to enter a medical trial to compare two cutting edge forms of transplant. Both are very successful. 50% of patients will use related “half-match” donor (like my children) the other 50% will get matched cells from the national umbilical cord bank. They want to compare the long term outcomes and costs of these two cutting edge approaches. It also gives (as I learned today) a bit of “insurance” that if the selected transplant fails to engraft, that I am already qualified for yet another transplant using the other arm of the study. While this is very unlikely, it is a benefit of being in the trail program. I should know later this week which arm of the trail I will follow and if one of my children will have to be a donor for me.
As was the case a year ago, I will do as much of the transplant as possible as an outpatient. I will have to be monitored at home 24/7 by a caregiver capable of getting me to the hospital on short notice if I need care. I will need to go to Johns Hopkins daily (weekends and holidays too) for doctors to check me and treat me as needed to balance all of the aspects of my transplant care. I will be unable to drive and be under doctor’s care for at least 70 days after the transplant starts…. Once again I will be relying on my wonderful family and friends to help me out with care over this period. I thank all of those who helped me a year ago, and send thanks in advance to those who will give so much to me in coming months. With the grace of God, great doctors and your help and prayers, I might have this next phase of treatment largely behind me by July. I’ll try to give an update or two along the way.
Thanks for all your concern and prayers,
Peter
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February 4, 2016
Hi All,
About ten days ago I received news from my doctors that the bone marrow transplant I received last spring has failed to eliminate my lymphoma. We always knew this was a probability, but hoped that since it was an “easier” transplant (where they used my own marrow stem cells to re-seed my immune system) that it was the prudent first step to take.
Unfortunately we have discovered that my form of lymphoma is so similar to my normal cells that my immune system won’t attack it (and chemo and other therapies alone will never be able to eliminate 100% of bad cells…). So now I need to receive a new transplant from a donor. This immune system is expected to see my lymphoma cells as foreign and attack them through graft-tumor conflict… the side effect how ever is some graft-host conflict as the new immune system attacks my normal cells… in time my systems will settle and the new immune system should come to adjust to my body and no longer attack it, but the 60 days around the transplant will challenge the doctors to maintain a healthy balance for me.
The treatment plan is to do two rounds of chemo to reduce the lymphoma load in advance of the transplant. There will also be four weekly rounds of chemotherapy on my spinal fluid to reduce the probability of any lymphoma in there. These treatments should conclude about middle of March. By then we should also have a marrow donor identified and be ready to start transplant in the second half of March. During the subsequent 60 days that it takes to complete the transplant, I will be on outpatient status going to Johns Hopkins on a daily basis for testing and support therapy. Following the transplant there will be at least a 30 day relatively intense follow up period after which there will be ongoing monitoring to assure the lymphoma is eliminated by the new immune system.
People have asked me what they can do to help. Prayers and spiritual support is always welcome. Otherwise, there is not much to do until the transplant begins. During the transplant time I’m likely to need some help from family and friends to stay with me and take me to Hopkins as I will not be allowed to drive and will need to be attended 24/7 in case there is need to get me to the hospital on short notice. I’ll circulate more information on this once my schedule is known. I’ve been asked if my family and I will need meals or other support. This I will coordinate through a neighbor who will keep a master list of what is offered and in the pipeline. Should have both of these organized by early March.
Several have asked about being a marrow donor for me. They hope to get a match from within my blood line family. If not, then they will broaden the scope. It is unlikely, however, that an unrelated person will be a close enough match. If any of you would like to be a public donor, you can do so via sign up at BeTheMatch.org. They will send you a kit for a cheek swab which you will return and they will place you in the data base awaiting matching.
Please feel free to forward this to friends and family as might be appropriate. I appreciate expressions of concern and good wishes. I won’t be able to respond to each of you individually, so, as with last time, I’ll ask a few people to coordinate distribution of information as my treatment progresses.
Love and good wishes to all,
Peter
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