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My thoughts and prayers are with the family, he was a great inspiration for the four years my husband battled this disease. Neil always had the answers.
Our Team is already started our fundraising as well we are off to a good start in memory of my husband here locally in Florida
Jack, They used to manually count Bobs plts since they were always his problem.
Always much lower then the cbc
Ellie was right, Bob did have the radiation, They were hoping to reduce the spleen and get his platelets boosted. The spleen went down. His counts held ok, but the platelets never really came back and that was always Bob’s problems he was consistantly having episodes from the low platelets. The stomach bleeds, The Sub bleed in the brain a year before he passed (The bleed was only in the lining and He fought it and you would never have known it happened)
A little over a year later the bleed was in the brain itself and It was not reversable, he lost his battle. I had not responded to this before as I did not want to discourage anyone from the treatment. It did help Bob for awhile and it got through it with no side effects.
God Bless and I continue to pray for everyone here.
Sandy, there are no words but thank you for sharing the above post.
I don’t stop in to much anymore, it is still so hard.
Bob did the Yogurt and the Yogurt Drink Activa I believe by Dannon as well.
Not sure how it helped with the MDS, he enjoyed it and did not effect the vidaza treatments when he was getting them.
I am so sorry to hear this sad news, Sandy I know your pain and my heart aches for you.
Hope all Goes well, you are in my prayers Neil.
Keep us posted.
My prayers and thoughts are with you and your family.
Have not been on much But thank you all for your continued support and prayers. I will still be lurking around and if I have any info I can pass on I will. You all remain in my prayers.
Have they considered increasing the Vidaza Doseage. 5 rounds of Vidaza does not seem like a lot. Bob had been on it for almost three years before it stopped working. It kept the blast down always, but the bone marrow finally gave out and the Platelets could not come up
I would look into a second opinion and just keep pushing the dr for questions. Have they done a recent Bone Marrow biopsy?
I am so happy for you and your family, Prayers continue
Unfortunately they never could get Bob’s platelets up high enough to do the procedures for the Port. So he was getting vidaza via shots. It worked for the first three years and seemed not to work as well when they tried increasing the dosage and Bob’s counts were starting to fall even more and he needed more transfusions.
I hope the port works for you
Thank you, It has been very hard, I am thankful I have work during the day to fill some of the void, But the nights are lonely, I just miss him so Much but I know he is out of pain. So much pain that he hid from us he was so brave. Thank you for thinking of me and everyones support. I sill think and pray for all of you on this forum.
Thank you for the continued support, and May God bless you both.