8/8/15
– On Monday, July 27th I started my 4th cycle. I had my
additional treatments on the 28th and the 29th. According
the Dr. Goy this should be my last cycle of RBAC. I am very hopeful that I will
be able to avoid any hospital time. As we approached the later part of the week
I was feel tired and weak.
On
Monday, August 3rd I had my first ever DLI (Donor lymphocyte infusion).
The goal with this will be to booster my new immune system. We are looking to
get some signs of GVHD (graft versus host disease). It could take as much as 7
to 9 weeks before we will see any impacts of the DLI. One impact we did see
right away is that it made me smell bad. I smelled like cream corn for a couple
of days. By the way, did I ever tell you how much I hate cream corn?
On
Wednesday, August 5th I had a follow up to check my counts from the
prior week’s chemo. As with my first three cycles, all my blood counts had
crashed. I was given platelets because there were at 12. My WBC counts were 0.6.
On Friday,
August 7th, I again was at the cancer center for another follow up.
Again my counts were very low. My WBC count was 0.9 and my platelets were at
18. I was given both blood and
platelets. The plan is for me to have another follow up on Monday, August 10th.
So… the
good news is that I have managed to stay out of the hospital. I will say that I
have had fevers over the last few days that were at or above the 100.5 mark. What
I have been doing… which is probably not the right thing, is to give it a half
hour and check it again. Each time my temperature had fallen back below the
100.5. YES, I know I am told that I need to call right away once I hit 100.5
but I much prefer to deal with the cancer center during the day then the ER at
night. This probably falls under the “do as I say, not as I do” category. Truly
if you run a fever of 100.5 while in treatment you should call into the cancer
center (or on call doctor) and follow whatever instructions are given to you.
The bad
news… I do not believe there is any. I am very happy to be living as normal a
life as I can.
What
does Monday have in store for me?... Only God knows… and I turn all my cares, worries and fears over to him.
Here is
a great new song that wonderfully drives home this point. It is called “Cast My
Cares” by Finding Favour”. Here is the link. Enjoy!
There is no fear in love, but perfect love casts out fear. For fear
has to do with punishment, and whoever fears has not been perfected in love.
1 John 4:18
More to
come…
2 comments:
My prayers are with you on your journey with this lymphoma.
I have posted a couple of times and shared with you that my wife also has MCL. I do not know if you remember but I told you in 2011 she was diagnosed and treated with RCHOP and auto-sct. She relapsed earlier this year and received 4 treatments of Rutixin-Bendamustine. She is in remission. We went through the procedure and testing for allogeneic stem cell transplant. We even had a transplant date of September 1st with a tested donor. Today, the doctor informs us that Medicare has denied the procedure. We are in shock. We will ask the Lord to guide us forward.
We will continue to pray for you
Beginning of Psalm 25
Lord, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness
you have done wonderful things,
things planned long ago.
Hi Charles, of course I remember you. I am sorry I haven’t been able to reply, I have been in the hospital dealing with some more health challenges.
I am very sorry to hear that Medicare has denied your wife’s stem cell transplant. My prayers will be that God give the decision makers at the huge insurance companies to treat every case with the compassion as it was for their own mother. Also that your wife’s doctors are able to come up with an alternative treatment that will as effective as the SCT.
I run into many people who have MCL pretty often… some who have had transplants and some who went in a different direction. All I can say is I have seen successes with people who went down both roads
Be well and may the Peace of Christ be with you.
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