I have been doing great with my new regiment. I take my 4 pills at 5:30 AM and then exercise for a half hour before breakfast.
On March 27th I have my consultation on my bone marrow transplant. I am looking forward to learn more about this.
And we know that God causes all things to work
together for good to those who love Him, to enable them to fulfill the purpose
for which they are called.
Romans
8:28
More to come…
http://mantlecell.blogspot.com/
http://mantlecell.blogspot.com/
8 comments:
Wish you the very best.
Hi Rich,
All the best for your treatment!
My dad has MCL since 2009 and has relapsed again.
Did you enroll in one of the clinical trials?
We are in India. Any pointers for accessing Ibrutinib as a part of any of the trials?
Regards,
Dhawal
Dear Anonymous,
Thanks for the encouragement.
Rich
Dhawal Parekh,
I am very sorry to hear of your Dad's relapse. I am in a clinical trial/study.
The title of the study is:
A Phase 2, Multicenter, Single-Arm Study to Evaluate the Efficacy and Safety of Single-Agent Bruton's Tyrosine Kinase (BTK) Inhibitor, Ibrutinib, in Subjects with Mantle Cell Lymphoma Who Progress after Bortezomib Therapy.
In checking the web, I found this link that may be helpful for you:
http://clinicaltrials.gov/ct2/show/study/NCT01599949?term=Janssen+Ibrutinib+Mantle&rank=2&show_locs=Y#locn
I will keep your Dad in my prayers.
Wishing you and your family the best.
Rich
Hi Rich,
Just got caught up on your "adventure". You are a good man in volunteering for clinical trials. It appears you volunteered for clinical trial for initial treatment. Is it wrong to say the trial combination chemo didn't work?
Also, you wrote that Dr. Goy is doing a preliminary prep for a donor transplant? Why can't you have an auto transplant? These are just curious questions.
My onc modeled my treatment after MDAnderson; I think Dr. Goy researches his treatment protocols differently than MDA but that is a good thing because we need to come up with a permanent cure for MCL so research and experimentation are a must.
How can I receive email updates of your progress? Is it through joining Google+ - I'm a bit confused and I would love to follow how you are doing.
You seem to be very strong in your faith! Without our faith I would have been a despairing patient! God bless!
Cyndi
http://advocateofhope.wordpress.com
Hey Cyndi,
Thank you so much for you interest, and encouragement with my health journey.
I will try my best to answer your questions:
Question 1. It appears you volunteered for clinical trial for initial treatment. Is it wrong to say the trial combination chemo didn't work?
Answer 1. I did participate in a trial the first time as well. It was: Phase I study bortezomib (VELCADE) plus rituximab-hyperCVAD alternating with bortezomib plus rituximab-high dose methotrexate/cytarabine in patients with untreated aggressive mantle cell lymphoma.
In all honesty I never had the expectation that this would be a cure. As a matter of fact Dr. Goy was very clear with me that is wasn’t. His goal was to get me in remission for an extended period of time and when my MCL did come back there would be such great medical advancements made that I would be a breeze to treat. I had been in remission for over 4 years and it does appear that Dr. Goy’s prediction of medical advances seems very promising. Would it have been better to be in remission for 10 years versus 4? Of course! But it is what it is and I am ready to do whatever I need to do.
Question 2. Also, you wrote that Dr. Goy is doing a preliminary prep for a donor transplant? Why can't you have an auto transplant?
Answer 2. I have my consultation on this tomorrow but I believe that after all is said and done my immune system will be very compromised. I am thinking that a donor transplant provides me the best chance for a complete fresh start. Saying this, I have so much to learn about the transplant process.
Question 3. My onc modeled my treatment after MDAnderson; I think Dr. Goy researches his treatment protocols differently than MDA but that is a good thing because we need to come up with a permanent cure for MCL so research and experimentation are a must.
Answer 3. Dr. Goy has worked in a number of places other than the John Theurer Cancer Center. As a matter of fact the place he worked prior to Hackensack was MD Anderson. The first study I was on was a joint venture between John Theurer and MDA. This new study with Ibrutinib also includes MDA.
Question 4. How can I receive email updates of your progress? Is it through joining Google+ - I'm a bit confused and I would love to follow how you are doing.
Answer 4. One thing that may help would be to add yourself as a follower of the blog. Another thing that would work would be to send me an email at RichFranco317@gmail.com . I could then add your email to my setting where you will get emailed with each post and comment. I will only do this if I know it will stay hidden to all viewers of the blog.
My faith is truly everything to me. I also strongly feel that as a Christian that we always need to be the best version of ourselves. If this means having to deal with illness, it should be done with peace and grace.
Thank you again and may be peace of Christ be with you always,
Rich
My wife's nephew is in a clinical trial using Ibrutinib at Vanderbilt Cancer Center. He had relapsed Chronic Lymphocytic Leukemia that had been in remission for 15 months. 3 different chemo regimens couldn't get it back into remission because the CLL had developed P17 deletion which made it unmanageable. After five weeks of Ibrutinib all of his lymph nodes have shrunk. He is doing great with no side effects. He has 3 more weeks.Then a possible stem cell transplant. My wife has Mantle Cell and is scheduled to have an auto stem cell transplant in May. I am blogging about our experiences at mymcljournal.blogspot.com.
Gerry,
Thank you for your very encouraging comments. I will keep your wife in my prayer.
Best of Health
Rich
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