[Terry McDowell]

My husband did receive medicine for nausea, Shelley, so your mom should be able to get that. Good luck to her and I hope her next treatment is more successful. This is an emotional roller coaster and it does help to vent and express yourself. I am really trying to understand it, but I find it difficult. We go to a Center of Excellence. My husband is having more issues so yesterday we were told he has MDS/MPN unclassified but also look for clinical trials for myelofibrosis. So confusing. Makes you wonder if they know much of anything. We do try to take it one day at a time though. Would go crazy otherwise.

[Terry McDowell]

I agree with Anges. We saw the doctor today and after listening I realized too that it is a spectrum and statistics are just statistics. It can be very stressful and heartbreaking but the doctors truly don’t know life expectancy. We were told a year last Feb., then told 5 years, and now told don’t know. Think the don’t know is most accurate. Only God knows any of our life expectancies. It is good to talk about your fears, and then concentrate on each day you have and how to make each one satisfying. Don’t give up hope or positive thoughts even though somedays it is hard. I just saw there are support groups under events. We are going to go to one of those. I think that will help: to be around people who actually understand.

[Terry McDowell]

My husband is a Vietnam vet with MDS. He was stationed at Camp Lejeune and the VA has admitted that the water supply was contaminated with benzene which is a prime factor in MDS. His cousin’s husband also had MDS from Camp Lejeune. He has applied for benefits but the process is disheartening. It makes me very angry with it all. They caused the illness to someone who served the country and thus should take responsibility for it and make the process easier. Sorry to all of you for these consequences in serving.

[Terry McDowell]

Hi Shelley. My husband was diagnosed in March, 2018. I must say that the more I research, the more confusing it becomes. I am starting to understand the blood counts. He has an appt. tomorrow with his specialist because some things have changed. At first diagnosis, I was very emotional and scared. As time has gone on, we have learned to take it one day at a time. I am writing to you because I recognize the shock and fear you are experiencing. Make sure you have a doctor that is associated with a Center of Excellence (they can be found on this website) and try to keep positive. My husband did very well with Vidaza and we will see what is now recommended. The one thing I have discovered is that no one seems to be similar to my husband and the way MDS has manifested. Reading message board sounds like there are many paths in this cancer. Who knows what paths your mom or my husband will take. They could be very good paths:)

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