Crazy Times

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 13^th. Friday the 13^th??? 

I’m sure nothing crazy could happen…. Right?

Check out this song by Jars of Clay called “Crazy Times”

https://www.youtube.com/watch?v=VXzMNCkduy4

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/

Bone Marrow Biopsy Results Are In

4/20/16 – Over that last few weeks my counts have been awesome. My platelets have gone from 97 to 123 to 126 to 137. I couldn’t have asked for more. With everything trending towards good news the thinking of those a heck of a lot smarter than me was that I should have nothing to worry about with my latest bone marrow biopsy (taken on April 8^th). 

Well the one wild card is that this is me and when have I ever followed what was supposed to happen?

I heard from Dr. Rowley today via a phone call and I was told that the test results again showed positive for MDS (Myelodysplastic syndrome). This certainly was not the news I wanted to hear. I did not get many details. I’m sure we will get into this when we meet face to face at my next check up on Thursday, April 28^th. Dr. Rowley did say that with my counts being so good that there was no reason to rush into anything and if my counts stayed good we could hold off doing anything for about 3 to 6 months… and at that time I will have another bone marrow biopsy to see where things stand.

So now I just need to keep positive, have faith and keep the hope.

Here is a YouTube link to a great song by Rend Collective called “Joy of the Lord”. It is a wonderful song for keeping my focus on what matters.

https://www.youtube.com/watch?v=x3gLeCiMJqI

Enjoy!!!

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

1 Thessalonians 5:16-18

More to come…

http://mantlecell.blogspot.com/