weekly transfusions and plateletts

[helen fried]

My husband was diagnosed with mds 2 years ago, he has since received 1 to 2 units of blood weekly and plateletts be weekly. He is on 2nd clinical trial at Moffitt cancer center with no improvement. He is constant exhausted,Falls asleep constantly and has absolutely no energy.
So hard to stay positive not knowing the outcome of this disease . Glad to have found this forum, hoping to get some support.
Is this exhaustion and sleepiness common?
I might add that he has had 6 bone marrow biopsies that show he has a less than 2% blasts.
Any comments would be very helpful.

[Julia Smith]

Dear Helen: My boyfriend was diagnosed with MDS several months ago and we are going through the same process, though we are not involved in clinical trials. He is 61 years old and a patient at the University of North Carolina Cancer Hospital. We go twice a week for blood and/or platelet infusions. He is on a chemotherapy regimen for the next few months, which consists of a week of chemo every 28 days. Like your husband, he sleeps a lot and has less energy. He has lost 25 pounds, so trying to gain weight is a priority. We just began the bone marrow transplant process a few days ago and hope to hear something within the next few weeks. Of course, that will be the beginning of another difficult process for Carl and for those who love him. Is transplant an option for your husband?

I know how hard this is. It is heart-breaking, stressful, and confusing. Is there a counseling service offered at the hospital there? I will keep you in my thoughts and prayers and hope you will have answers very soon.

Julia S.
Chapel Hill, NC

• This reply was modified 8 years, 10 months ago by Julia Smith.

[helen fried]

Dear Julia,
Thank you for your reply.Good to hear from someone going through the same thing!My husband has been getting weekly transfusions and plateletts for 2 years!!!!!He’s had 4 months of Vidaza and now on 2nd clinical trial with no improvements, u like your boyfriend he has not lost a single pound!!
Moffitt cancer center has mentioned bone marrow transplant but they are skeptical as he is 70 and it is quite an ordeal to go through this procedure. He goes for cbc twice a week, 4 to 6 hours for transfusions once ortwice a week, then 200 miles round trip to Moffitt Cancer 6 to 8 times a month . It’s taken a toll on both of us especially when we don’t know what the future brings. At least we have the ability of going to a good cancer center.Thank you for letting me vent!!!!
Is your boyfriend scheduled for the transplant? ?What is his blood and platelet count??
Thanx again, hope to hear from you soon, hang in there!!!!!!
H

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