MDS and the family

[brian steenson]

Hello all. My father was recently diagnosed with mds just weeks after his 70th birthday. I dont know his counts at the time of writing this. I know he is low in all three areas and gets Vidaza and transfusions. He is just starting his 2nd round of the Vidaza. What I want to know is to hear from people how the family can help, what we can expect going forward, and what you all feel is the most important thing we can do to improve his morale and well being during this time.

[Richard Wagner]

Hello Brian, Well not much positive to say on this disease. I am 75 and have MDS RAEB-2 with blasts of 18%
I was diagnosed with it Sep 2015. Been through 6 months of Vidaza. Bone marrow shows not sigh that it helped
and during chemo my CBC count was very low. Now that am not on Vidaza last 6 weeks it has gone up to what it was last Sep as well. I went to University of Chicago also for a second opinion. I was given 1-2 years at that time.
How much left? We dont know. Now I hear the Northwestern Hospital has a Clinical trial I may be eligable for,
but that will mean a forth Bone marrow biopsy, and many tirps to Downtown Chicago. That is an hour and half each
way by train, and bus/taxi.. will it help me live longer??? Or should one just say no, let me be. I saw my
father die from this 30 years ago. They had no Chemo for it then.. perhaps your dad and I will live long enough
to see a cure of sorts.

Best wishes, Richard.
s

[brian steenson]

Thank you, Richard. I hope for both of your sake and everyone else’s they do too. Has there been anything others have done for you in particular that made you feel better mentally at least? Happier or more motivated to keep dealing with it? Im trying to look at this from the caretaker/family side and see any positive stories people have of their time with loved ones and friends and what they did for the patient while dealing with MDS.

[Richard Wagner]

Hi Brian, No there has been no one or nothing done for me. When my oncologist read the report on my bone marrow he was
very out front with me. No cure for what I have.. That being MDS-RAEB-2. Each MDS is different. Dont remember what your
father has. Some are more treatable then mine.

I have accepted what I have. I am an optimistic person, and say to everyone that at least I dont have time to get any of the really
terrible long term diseases such as MS, Parkinson’s, all the rest of the cancer that can linger for years.

I do have a choice and need to decide in next few months. That is do I want to try a Clinical trial at a Chicago University..Not sure,
because they have to monitor my kidney, liver functions so the potential cure will not kill me first.

Best wishes
Richard

[rar]

I had MDS-RAEB-2 with 15% blasts. I went on a clinical trail and got the blasts down to 2%. I then had a transplant 2 years ago. I had some rough spots on the road to recovery. I am waking up on the green side. I am almost 76.

Ray

[Richard Wagner]

So glad you are still doing good. you posted on Jan 14, They found a clinical trial for a drug (AG-221) that works for people who have a IDH2 gene mutation. I dont have that gene mutation. However after reading all the hell you went through in you blog, I would not want a transplant at 75 years of age. I urge others to read
your comements by searhing “new to MDS’ Ray gave us great detail on his success to date.
Personaly if I did a Clinical trial and got my blasts down to 2% I would stop there. I am at 18%.

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