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My MDS does not respond to treatments. What's next?

Posted by jeffreykassover1 @jeffreykassover1, Aug 13 3:22pm

Have not responded to any treatments, not about to try transfusions only, what can I expect. I am 77 years old.

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janetlen | @janetlen | Aug 24 11:21am
In reply to @jeffreykassover1 "My doctor seems to think that it's not a great option for me. Almost 78, fair..." + (show)
Profile picture for jeffreykassover1 @jeffreykassover1

My doctor seems to think that it's not a great option for me. Almost 78, fair shape but overweight, possible heart issues, though none recently indicated. In his opinion, yes, I could probably find somewhere, such as Sloan, Mayo, or Moffitt, to do the Transplant, but he really wonders what the doctors' motives are if the prognosis is not great. I'm starting to be transfusion dependent, hoping to only need transfusions every 3 weeks. Maybe I'll get lucky, and something will appear in the meantime.

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I am glad your Dr is honest. I am really thinking the transplant statistics through. I don't know if 50% is good enough to take the risk. Jeff I hope your transfusion level remains once every three weeks. Has your Dr recommended any other drugs?

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jeffreykassover1 | @jeffreykassover1 | Aug 24 1:17pm
In reply to @janetlen "I am glad your Dr is honest. I am really thinking the transplant statistics through. I..." + (show)
Profile picture for janetlen @janetlen

I am glad your Dr is honest. I am really thinking the transplant statistics through. I don't know if 50% is good enough to take the risk. Jeff I hope your transfusion level remains once every three weeks. Has your Dr recommended any other drugs?

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Not yet, but we'll have a better idea shortly. Thanks, and I guess the percentages vary according to age and other conditions. I heard mixed results.

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sitinin403 | @sitinin403 | Aug 24 2:22pm

I am a newcomer to MDS! Been getting the injections and taking the pills, however they took me off all meds for a week because my body is not reproducing neutrophils. Have appt with Doc tomorrow and quite concerned about what may be next.

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toste | @toste | Aug 25 1:49pm
In reply to @sitinin403 "I am a newcomer to MDS! Been getting the injections and taking the pills, however they..." + (show)
Profile picture for sitinin403 @sitinin403

I am a newcomer to MDS! Been getting the injections and taking the pills, however they took me off all meds for a week because my body is not reproducing neutrophils. Have appt with Doc tomorrow and quite concerned about what may be next.

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Could you tell me about the injections? We are just getting into this and doing a lot of reading!

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sitinin403 | @sitinin403 | Aug 25 2:19pm

Two injections at a time in same area and they can be quite uncomfortable depending on how much/ or how thick your subcutaneous tissue is. I have very little. Shots are daily for seven days then you get a week off.

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drawlings0803 | @drawlings0803 | Aug 26 10:29am
In reply to @janetlen "@snakebite you are a wise man. You have had so many years of treatment and a..." + (show)
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@snakebite you are a wise man. You have had so many years of treatment and a wealth of information to share. Yes IMO God has a hand in all of this, and brings me hope. I love the term "bag a blood." @jeffreykassover1 don't give up finding a treatment option. University Hospital, Anschutz, in Denver does not have an age limit for Stem Cell Transplants. You might try contacting the Blood Cancer clinic there(https://www.uchealth.org/provider/marc-schwartz-md/) I saw Dr. Schwartz yesterday. I am on the transplant path again.

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Hi - I am going through a transplant now. Such a hard decision, but after communicating with the many fine folks on this blog, I decided to go through with it. My MDS is B2, intermediate I think. I did 4 rounds of Dacogen & had 3 blood transfusions. I felt better afterward & blood numbers/biopsy results looked good. However, my drs told me I could easily relapse to AML; how quickly that might happen no one could say. And of course that would make treatment all the more difficult.
I feel I was led by God to do this & have faith I will be fine. I am 71 years young.
Hugs,
Diane

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billretiredusaf | @billretiredusaf | Aug 26 11:25am
In reply to @drawlings0803 "Hi - I am going through a transplant now. Such a hard decision, but after communicating..." + (show)
Profile picture for drawlings0803 @drawlings0803

Hi - I am going through a transplant now. Such a hard decision, but after communicating with the many fine folks on this blog, I decided to go through with it. My MDS is B2, intermediate I think. I did 4 rounds of Dacogen & had 3 blood transfusions. I felt better afterward & blood numbers/biopsy results looked good. However, my drs told me I could easily relapse to AML; how quickly that might happen no one could say. And of course that would make treatment all the more difficult.
I feel I was led by God to do this & have faith I will be fine. I am 71 years young.
Hugs,
Diane

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My husband recently diagnosed with MDS. Just starting
Chemo. I am curious as to what you believe caused this
Lukeman in you..
Hope you are feeling better and have energy to enjoy your day.
Thank you, and a big hug.
Debbie

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drawlings0803 | @drawlings0803 | Aug 26 1:48pm
In reply to @billretiredusaf "My husband recently diagnosed with MDS. Just starting Chemo. I am curious as to what you..." + (show)
Profile picture for billretiredusaf @billretiredusaf

My husband recently diagnosed with MDS. Just starting
Chemo. I am curious as to what you believe caused this
Lukeman in you..
Hope you are feeling better and have energy to enjoy your day.
Thank you, and a big hug.
Debbie

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Hi Debbie,
Don’t have a clue what caused my MDS. I had breast cancer 17 years ago. Drs think the MDS might’ve been caused by the chemo & radiation I received then.
But who really knows? And, at the end of the day, it doesn’t really matter.
We just move forward, get as much information as we can to make the best decision. There’s no easy answer. As I said before, I feel God led me to what I am going through right now, so I have faith He will get me through it.
Hugs,
Diane

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 27 10:20am
In reply to @drawlings0803 "Hi - I am going through a transplant now. Such a hard decision, but after communicating..." + (show)
Profile picture for drawlings0803 @drawlings0803

Hi - I am going through a transplant now. Such a hard decision, but after communicating with the many fine folks on this blog, I decided to go through with it. My MDS is B2, intermediate I think. I did 4 rounds of Dacogen & had 3 blood transfusions. I felt better afterward & blood numbers/biopsy results looked good. However, my drs told me I could easily relapse to AML; how quickly that might happen no one could say. And of course that would make treatment all the more difficult.
I feel I was led by God to do this & have faith I will be fine. I am 71 years young.
Hugs,
Diane

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Good morning, Diane! You are literally just a couple days post BMT for MDS! So happy to see you here in the forum. This feels like a live news update, unfolding as each day goes by. ☺️
Your positivity and determination are exemplary! Thank you for sharing as you go along… Hugs…oops, air hugs at this point.

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dax1million | @dax1million | 22 hours ago
In reply to @janetlen "Until MDS, my body produced my blood. Relying on someone else to produce my blood for..." + (show)
Profile picture for janetlen @janetlen

Until MDS, my body produced my blood. Relying on someone else to produce my blood for me is a dependency I never wanted.

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@janetlen
But thank God transfusions are available. Without them where would we be. We have new great grandbabies to see, many occasions to celebrate. Beautiful things on Gods earth to see. God gave all these doctors, scientists, and many manufacturers the knowledge to develop transfusions, with his mercy he looked into the future and saw our need. Thank you God.

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