4/28/16 – I met with Dr.
Rowley today and learned a lot more about my situation with MDS. It all points
to chromosome 20. Basically the bone marrow biopsies are showing a 20q abnormality.
The crazy thing is that I am feeling better than I have in a very long time.
With that said, as
long as my counts stay good we will take a wait and see approach and hold off
doing anything for about 6 months. At that point I will have another bone
marrow biopsy. Of course if my counts drop before then (which can be a sign that the MDS is
progressing) I will have a bone marrow biopsy sooner. If this does progress it
seems that the best treatment would be for me to have another stem cell
transplant… but let’s not get too far ahead of ourselves. For all I know I
could have a clean bone marrow biopsy in 6 months.
In discussing why
this 20q abnormality is happening to me one thing that has been speculated is
that it could be donor derived. This doesn’t mean my donor had MDS. It means
that if my donor had chemo therapy that there would be a good possibility that
he would have developed MDS afterwards. How crazy is that???
Another thing that
has come up over the last two weeks is that I have an itchy rash on my neck,
arms, chest and back. It is not a bad enough to be considered GVHD but it is
bad enough to be a reason to delay treating me with PD-1 (Opdivo). Apparently
PD-1 and GVHD do not play nice together. If there is the slightest chance that
my rash is GVHD then it is better to play it safe than sorry.
So… I think my word
of the day is “Crazy”. I guess it’s fair to say that things are never boring with
me.
I have a follow up
with Dr. Rowley in two weeks on Friday, May 13th. Friday the 13th???
I’m sure nothing crazy could happen…. Right?
Check out this song
by Jars of Clay called “Crazy Times”
And the peace of God,
which surpasses all understanding, will guard your hearts and your minds in
Christ Jesus.
Philippians 4:7
More
to come…
http://mantlecell.blogspot.com/
http://mantlecell.blogspot.com/
2 comments:
So crazy! Here's to praying for good biopsy in 6 months and containing to feel good. Living in uncertainty is definitely a way of life for us. But oh, how it improves our dependence on God. Thank you for the updates.
Janet
Hey Janet,
Thanks again for all your prayers and support. Crazy times are awesome for keeping life in perspective. God, family and friends. One thing I can do is to keep getting myself stronger so I can be the best I can be. It truly feels great to be productive and to be able to help and be there for others. As far as my bone marrow biopsy in 6 months, I’m just going to take things a day at a time and not spend a second worrying about it. There are too many cool things that I should be focusing on.
I hope all is well with you.
Rich
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