Low platelet counts

[Sharon Sima]

My husband was diagnosed with MDS 2 years ago, his platelets drop to 6-7 K every two weeks he receives an infusion, only his platelets are affected, he has some bruising but considering what he does its expected, he’s always out in the garage working on something,he’s living his normal life, if he couldn’t he would not want to live, so we let him do his thing. His Dr wants to put him on some medication recommended by Mayo clinic, which is off label for MDS, clinical trials are small and could change over to AML, although DNA on cells, say his MDS won’t change over to AML, I observe him for bleeding, infection, he feels good, back pain, but that’s his normal, I’m confused as to why his dr keeps pushing this off label med, we’ve had 2nd and 3rd opinions when first diagnosed, I’m not comfortable with his doctor, but my husband is, and ultimately he’s the patient, he has no intention of starting that recommended med, how low can platelets go and how long can you continue infusions?

[Donna]

Hi Sharon,
I guess doctors treat differently probably dependent upon all other lab numbers and result of bone marrow biopsy. That being said, I have not had any treatment, just frequent labs for several years. My platelets are around 67,000 now and my doctor said I will need to start chemo when they get to 50,000. I have heard other doctors say they can do procedures, etc. until 50,000 without problems. So I feel like 50,000 is the magic number. I’m not sure if this is helpful or not. Donna

[diana]

Hi Sharon,

I hope your husband is doing well. You didn’t mention what kind of infusion your husband gets, and for how long? What his platelet counts before treatment?

I was diagnosed in September 2017 at the age 65. The Vidaza does/did help me. Like they said Vidaza caused hectic with my blood the first two cycles. My blood counts started improving the third cycle. I did complete all six cycles and now have blood work once a month.

My platelet counts was 539, 361,471 before the first cycle

332, 173, 147, 312 before the 2nd cycle

205, 77, 69, 143 before the 3rd cycle

192, 280, 326 before the 4th cycle and has been normal since

my first and second cycle…7 days.
my third – six cycle……..5 days vidaza.
I am grateful that my doc reduced Vidaza to 5 days after 2nd cycle. Her strategy worked apparently.

[Sharon Sima]

My husband gets platelet infusions, his platelet count goes from about 10K to 6K, we consulted with a doc from Yale who runs clinical trials in MDS, of which my husband was not interested in doing, we also sought out another opinion from a very knowledgeable doc in MDS, their opinion was monitor and transfuse platelets when he gets below 10, my husbands doctor is pushing this off label med recommended by Mayo, off hand i cant remember the name of it, he doesn’t feel vidaza would be helpful, I do not feel this off label med with all its side effects would be the way to go, i’m not thrilled with his doctor, wasn’t from the beginning, we would use one of the other doctors we have seen but they are not close by and don’t have privileges at our local hospital, and when he was being monitored every week, now its every two weeks, and he doesn’t want to travel for treatment, he’s 76 and pretty well set in his ways, i have a medical background, and oversee his treatments, i feel he is doing fine, with the exception of low platelet counts, no side effects, quality of life is good for a person his age, he also has COPD and history of MI, but overall he is doing well, the rest of his labs are good, i feel leave well enough alone, but it was interesting to hear about the success of Vidaza in your case, I may ask for a second opinion with another doc in the practice where his doc is, i just wish i could feel comfortable with his doc, but with all the reading of past posts i have done, people have done well with platelet counts as low as 1K and one person stated his platelet count was 0, its a confusing disease and takes a lot of research for the right treatment, if his quality of life was poor, i would say go for it, but i hate the thought of opening Pandora’s box with side effects, i monitor him closely for bleeding and infections, a brain bleed would be harder to detect, but i am sure the symptoms would raise a red flag for me,
i really appreciate your time Dianna, and helpful info, if his platelet counts were anywhere near yours we would be doing back flips:)
have a good evening

[diana]

Hi Sharon,
I came across this, and thought you might be interested in reading if you don’t already.

http://forums.marrowforums.org/showthread.php?t=6075&goto=nextoldest

Please scroll down to Sally C may 4, 2018
about a successful low platelet treatment.
“He was the first MDS patient in a Promacta (Eltrombopag) clinical trial at The National Institutes in 2011-2012….remission since”
It may depend on many other factors also.
Good luck to you and family.

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