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wboy1234
@wboy1234

Posts: 1
Joined: Mar 11, 2016

I have been diagnosed and under treatment for MDS

Posted by @wboy1234, Mar 17, 2016

I have been diagnosed and under treatment for MDS. Whag are the treatments for MDS?

REPLY

Hi @wboy1234, welcome to Connect.
Here is some information about Myelodysplastic syndromes http://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndromes/basics/definition/con-20027168

As the article states “Treatment for myelodysplastic syndromes usually focuses on reducing or preventing complications of the disease and its treatments. In certain cases, myelodysplastic syndromes are treated with a bone marrow transplant.”

What treatment has your care team recommended?

My husband is 80 and has been on Dacogen for mylodysplastic syndrom for 17 months, is there a better treatment?

@desertjulie, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to a current MDS conversation taking place.

I would like to introduce you to @wboy1234 who has also been diagnosed with Myelodysplastic syndrome. @wboy, would you mind sharing your treatment option with @desertjulie?

Also, please see the link that Collen supplied above, to information on Mayo Clinic.org.

Can you tell me, when was your husband diagnosed? How have you been coping with this? If you’re interested there is a group here for Caregivers that offers support and a listening ear. Follow this link here http://mayocl.in/2h1ttpY

He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?

@desertjulie

He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?

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Hi @desertjulie. There are other drugs used to treat MDS, but your husband’s physician probably recommended Dacogen for good reasons. If Dacogen is helping him maintain his red cell count and platelet count, then that’s a good reason to continue. Given your husband’s age, a transplant is not going to be recommended, and all other choices are focused on keeping his blood counts up, not on curing the MDS. That’s what Dacogen can do.

Vidaza is another drug that is effective for many MDS patients. Like Dacogen, it’s what’s called “hypomethylating agent.” Some patients who don’t respond to Dacogen or Vidaza try the other one next, but if your husband’s counts are holding on, you may not want to mess with success. His low white count is obviously a concern, so that’s worth asking the doctor about directly.

A subset of MDS patients have a particular chromosome abnormality, called “5q minus,” for which a drug named Revlimid is especially effective. Presumably, your husband doesn’t have 5q minus or the doctor would have recommended Revlimid over Dacogen.

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