[Greg Coleman]

I was 54 when diagnosed with MDS/MPN. I am writing to you from the hospital where I received a BMT. I too had a rough year last year. Spent 91 days in hospital total in three different stays. My wife, who is British btw, was told on 3 occasions she shouldn’t expect me to make the night. And each morning I awoke to her sleeping by my side. He is quite a bit younger than me. The human body is amazing. He has a good support system it sounds. All the best to a full recovery! Also my donor is a Welsh woman.

[Greg Coleman]

I too was 54 when I was diagnosed with MDS. I have MDS/MPN overlap, so I know my case is different to yours, but I will share my experience to maybe relieve some of your fears. As we speak, I am in the hospital recovering from my BMT. I received my cells on Tuesday. I haven’t been sick at all through the process, no hair loss or anything. I dare say, aside from boredom, it has been easy. I am on day +5 and they warn me I may still get ide effects. One moment at a time.

I was diagnosed June 2017 after being tired more than usual and bruising easily and the bruises lasting for weeks. Within 2 weeks I was started on Decitabine. My spleen was swollen and tender. My counts got as low as Platelets 2,000 and Hemoglobin 2.3. I was hospitalized three separate times for infections for a total of 91 days in the hospital. it was decided my spleen should come out and on December 4th my spleen was removed. Immediately, everything got better. My counts rose, I began to regain strength and put on weight ( I lost 100 lbs.). From December to present, I regained those 100lbs and became healthy enough for the BMT.

I agree with the other posters, get a second opinion and get it from a center of excellence. I am with Dana-Farber in Boston. It is terrible to get here (2+ hours each way) but worth the trip. Don’t fear this. Respect it. It is curable. Get the best you can get for this. There are no “dumb” questions or too many questions. All the best in your battle! Anytime you need a fellow traveler, hit me up. gcoleman1363@gmail.com

[Greg Coleman]

Julie,

I am having my SCT on Wednesday July 18th so I don’t know about post transplant. However, I was very sick last year due to complications from Decitabine treatment and lost 100 lbs. I was able to put significant weight back on by drinking the following shakes. Ensure and other such drinks tasted chaulky and I couldn’t get them down. This shake was delish and easy to drink. I would just check with the Doc to see if it’s ok. The NP in my Doc’s office is the one who suggested it to me. Best of luck!

1 Carnation Instant Breakfast packet (love the strawberry)
1 scoop Whey Protein (also strawberry or vanilla)
1 cup of milk
Blend for 1 minute

[Greg Coleman]

Angela,

I have MDS/MPN. I was diagnosed a little over a year ago. I am scheduled for SCT on Wednesday July 18th. I feel strong and my counts are completely normal. I had a bad time last year while having Decitabine treatments (4 cycles). I was hospitalized for about 90days last year but have made a recovery that enables me the SCT. My wife and I are not wealthy (I’m a firefighter and she a librarian) and couldn’t afford for her to stop working. We made it work with her taking minimal time off. We are planning to do the same when I return from the SCT. I felt weak at times but was able to care for myself while she worked. She did all the cleaning and shopping and I was able to do laundry and cooking. We hope this will work for us again. Hope this helps. I feel some of the best treatment is talking frankly about what we all are going through. Thanks to all who contribute! Best wishes to all!

[Greg Coleman]

Greg Coleman
Participant
I am a 55 yo male diagnosed with MDS/MPN about a year ago. I live in Rhode Island in the US. I started decitabine almost as soon as I was diagnosed with no side effects. After my 3rd round I started having issues with infections and was hospitalized 3 times for a total of 91 days. My hemoglobin dropped to 2.3, platelets 2,000 and my spleen was extremely enlarged. Ended up having my spleen removed and everything started turning around. Today my hemoglobin is 13.8, platelets are 294,000. I am scheduled for a stem cell transplant July 18. I have been a firefighter for 32 years, am in excellent health, take no meds. They tell me this is the cure. I am having transplant at Dana-Farber in Boston. I don’t feel sick in the least and am hoping to return to being a firefighter if all goes well. Wondering if anyone else had issues with the spleen?

[Greg Coleman]

I am a 55 yo male diagnosed with MDS/MPN about a year ago. I live in Rhode Island in the US. I started decitabine almost as soon as I was diagnosed with no side effects. After my 3rd round I started having issues with infections and was hospitalized 3 times for a total of 91 days. My hemoglobin dropped to 2.3, platelets 2,000 and my spleen was extremely enlarged. Ended up having my spleen removed and everything started turning around. Today my hemoglobin is 13.8, platelets are 294,000. I am scheduled for a stem cell transplant July 18. I have been a firefighter for 32 years, am in excellent health, take no meds. They tell me this is the cure. I am having transplant at Dana-Farber in Boston. I don’t feel sick in the least and am hoping to return to being a firefighter if all goes well. Wondering if anyone else had issues with the spleen?

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