You reach some points in your life where there are forks in the road and you have to choose what direction to go. Those moments can fill you with self doubt and trepidation. Our visit with Doctor Rowley at Hackensack University Medical has brought us to such a moment. Here's the result of the consultation.
The test results over the four months since the transplant show that the cancer is the same as it was before the transplant. In other words the transplant had no discernible impact. The chemo before the transplant reduced the cancer by 90% and that's where it rests today. The team outlined four courses of action to select amongst:
1. Wait, watch, monitor and commence treatment when the disease starts to progress.
2. Commence a chemo regimen to hold the disease in check and go to more aggressive regimen when the disease starts to progress. The danger in this approach is that the disease will become resistant to the chemo being used and it will no longer work to curb the disease.
3. Do another Autologus Stem Cell (my own stem cells) transplant under a Clinical Trial chemotherapy protocol which is more aggressive than the one used in my first transplant. This could leave me with a better response, or not, awaiting a relapse and perhaps an Allogenaic (using brother Ed's stem cells) but with a decreased chance for successful results.
4. Allogenaic (Ed's cells) Stem Cell Transplant. They are looking to do this in early June. This process replaces my immune system with Ed's immune system but it has the following risk/reward scenarios:
A. I could get severe GVHD (graft verses host disease) where Ed's immune system perceives my body as the enemy and attacks and destroys it. There is a 15% chance that this could happen and the result would be death shortly after or during the transplant process.
B. I could get chronic GVHD which would mean being on strong immunosuppressants for the rest of my life but I don't know how long that would be and my quality of life would be greatly impacted. I have to check on the percentages relative to this possibility.
C. I could get mild GVHD with strong GVM (Graft Verses Myeloma) in which case the GVHD would disappear and the Myeloma would be cured. I also will have to check on the percentages for this result.
D. I could get mild GVHD with no GVM and also don't know the percentages.
Anyway, this is the crossroad at which we find ourselves. All of your observations and inputs will be appreciated. Thanks.
I am so sorry, although that word isn't enough in these circumstances. I am without observations or inputs at this point, but, believe me, you will be in my thoughts and prayers. And if find I can offer any input, I will do that. Love to you, Joanie and your entire family.
ReplyDeleteKathe
Dear Robert. I know this isn't the result you and Joanie hoped for and I am sorry. I wish you even more strength and fortitude, and am glad you research as thoroughly as you do. Thank you for continuing your blog and sharing with us. I would do as you do, research it to try to make best decision...and what a decision to have to make. Thinking of you, Love, Eileen
ReplyDeleteRobert,
ReplyDeleteI can see how you would have so much doubt and trepidation. You are a very informed patient. When you make your turn down the road that works best for you, do not look in other directions. Do not think about the other choices. Head down the road with the knowledge that your support systems are strong, your well informed, you have prayers from soooo many who are cheering for you.
cissy
Hey Rob - I wish I had that perfect answer for you, but what I can offer is to take one day at a time, the right choice will come to you, you will know what you need to do. I agree with Cissy, no looking back, only forward, stay positive, and know that you are loved and supported by such a wonderful family. Love ya. Liz
ReplyDeleteHey Joan and Robert,
ReplyDeleteThinking all good things and sending our positive thoughts.
Marian and John
see you the week of the 19th? April?
My thoughts on such an ominous decision? Who can say what to do, that has not been in your shoes?.... but my gut would say "go for the gusto"... life is to be lived... who knows when our days are up.... but are we to live life preserving "quantity"? I want "quality"... if if that means 15 minutes of "WOW" over 15 years of mediocrity... I'd take the WOW... Life is to be lived, not watched.... alot of your loved ones may not be happy I said that, but that is how I feel. Whatever you decide, you are a wise man and I know you will do what is best for YOU. Always in my prayers....
ReplyDeleteKate
Hoping that everything turns out well tomorrow! Choosing which path to follow is always the toughest part in life...but once you have made the choice always look straight ahead... keeping you always in our prayers!
ReplyDeleteZaida and Sofia