7/22/13 – I met with Dr. Mateo today to get the results of my
2nd set of scans. His comment to me was: “you have really hit a home run with this drug.” After 126 days on Ibrutinib my
MCL has reduced by 90%.
I am now starting cycle 7. This will be a little different
because I am having some dental surgery on August 1st. I am having a
tooth extracted and since it will require stitches I will need to discontinue
taking Ibrutinib for 7 days prior to the procedure and another 7 days after. This is required because one of the side
effects of the drug is, like many other drugs, it causes the blood to be
thinned. With this you always need to be cautious of excessive bleeding. I am not
seeing this as a big deal.
Regarding the Bone Marrow transplant process… so far nothing has
come up in our donor search. Coincidentally, while we were at the Cancer Center
we ran into our transplant coordinator. She shared with us that the plan is to
take a closer look at my brother, who was a 50% match. We will also test my
daughters, who are 20 and 23 years old, to see if either of them would be a
good match. Both of my daughters will be 50% match. In speaking to both my daughters,
they are both very excited with possibility of being the donor for their dear
ol dad. Sounds like they want to arm wrestle for this “honor”. I am so blessed to
have the greatest daughters in the world. And I would be remiss if I didn't say
how lucky I am to have the great brothers I have.
I know that a 50% match is not ideal but according to the
transplant coordinator, there is not any conclusive evidence on if a 100% match
of a someone who is not related to me as being more or less effective than a
50% match of someone who is related to me. In addition, The John Theurer Cancer
Center at Hackensack University Medical Center is performing more and more 50%
match transplants with excellent results.
So for now I just need to be patient and live my life to the
fullest… one moment a a time.
“For God so loved the world, that he gave his only begotten Son,
that whosoever believeth in him should not perish, but have everlasting life.”
John 3:16
More to come…
2 comments:
I have relapsed MCL which qualified me for a clinical trial of ibrutinib (PCI-32765), a targeted therapy drug. Going into the trial, I had a swollen lymph node. After one week taking ibrutinib (4 capsules a day), the lymph node shrunk and couldn't be palpitated. Ibrutinib, unlike chemotherapy, blocks the cancerous B-cell from reproducing and also removes its sticky covering. It's the sticky covering that makes it hide from chemotherapy by sticking into the mantle zone of the lymph node where the macrophages (hungry T-cells) can't find it. There are no side effects for me. I entered this trial in lieu of a stem cell transplant which I met with a doctor at the Mayo Clinic for an appointment. He encouraged me to do the trial first and if it didn't work, then do the transplant. I'm 6 weeks into the trial. At 12 weeks they'll do a CT scan and see if the lymphoma is gone or not. Go to clinicaltrials.org and see if there is a trial near you. Fortunately, my trial was only 224 miles from my house. I drive there twice a month for check ups.
Hi Kaila,
Thank you for your post. It is great to hear that you have found a clinical trial that is so close to where you live and that you are doing so well with it. I am also in a clinical trial and I have been blessed with a great response as well. The reason why we are also working toward a bone marrow/stem cell transplant is that my doctors feel there is not enough information on how long the trial drug (Ibrutinib) will work for me. Historically, Mantle Cell is known as the type of disease that treatments will initially work well but after a period of time the treatments become less effective. Being it is still very early in the life cycle of Ibrutinib, we do not know how long it will be effective. Sure, if we were 5 years down the road we would have a much better idea on if Ibrutinib could be counted on to keep MCL down.
With the many unanswered questions, my doctors feel the best for me would be to get MCL behind me sooner vs later and that the best known way to get there is the transplant process. With the minimal amount of disease I have and with the fact that I am in excellent condition, there is no better time for me to embark on a bone marrow/stem cell transplant. I won’t lie to you. I would love to avoid the transplant but also I want to do whatever it takes to be around for a very long time. My future is bright. I have daughters to walk down the aisle which brings to possibility of being a grandfather. I certainly do not want to miss out on any of that.
Thank you again, I will keep you in my prayers that you continue to do well with your treatments.
Rich
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