suzanne

[shirlsgirl]

Just wondering how you are? Hoping that you are still in remission. Zarnestra has worked so well for you…hoping you are still doing well!!

I’m not sure if you remember, but my mom has been on Gleevac for a couple of years now. She’s hanging in there. Although her blood counts are changing a little each doctor’s visit…she’s still going strong. Dr Leber is calling her his star patient! We are so thrilled.

Suzanne, we’d love to hear how you are doing..hope all is well!

Jody

[Zoe]

Yean, me too (love to hear from you Suzanne). You have been on my heart lately and I have been praying for you.

Zoe

[Suzanne]

Hey, Thanks for remembering ancient history with this disease. After 4 years of complete remission it looks like some from of the disease is sneaking back. My counts are fine but the 5q- in my bone marrow cells are back and increasing. Hopkins is watching and at this point we plan to try Revlimid starting in January.Hoping to buy more uality time. However our disease is not predictable and they say I am not even typical of what they know so they definitely do not know what will happen or what will work.So I guess I need to be back in people’s prayers. Thanks for checking on me.

[Zoe]

Thanks for updating us. What do they mean you are not typical? What’s happening now, or before? Or both? Hoping for the best with the Revlimid.

Zoe

[Suzanne]

Zoe Most of the “before” is in my signature line. I think it is hard to talk about “Typical” with the family of MDS diseases because there is so much they don’t know-especially why individuals exhibit so differently and react to treatments so differently. The disease I originally had -RAEB transformed to AML with a 5Q-, normally does not respond well to Chemo and when it does relapse is usually pretty quick-like within the first year. I responded with a full remission to the MDS, the AML and the 5q- and I stayed in remission for 4 years-They don’t enough patients like that So now the closest thing they have to compare me with to get an idea (statistically) about whatto try &what might work is patients who relapse a long time after a transplant and maybe patients with secondary MDS (coming after chemo for another cancer) Right now the plan is to try the Revlimid to see if we can buy time-but that is usually done with on-set MDS and a category of the diseas that is called 5Q- and I don’t fit that-so they have no idea what chance it has of working and if so for how long. There are other medications and trials I could try to buy time but my Dr. says that eventually I am going to have to make the decision whether to try the mini bone marrow. Hope that answers your question.

[Zoe]

Yes, thank you for sharing. Will continue praying for you.

Zoe

[gemloyear]

Hi Suzanne, I too have been thinking of you and praying that you are still in remission. Please let us know how you respond to the revlimid. The longer you can hold off on the transplant the better. It seems that research is making advances right along with new trials and chemos.I’ll pray that you will do well with what ever you may try to beat this darn disease.
All the best,Ellie

[Neil]

Hi Suzanne,
Have you researched cord blood transplants? The Univ of Minnesota Hospital has been finding some good results (don’t have stats). Quite a few patients have been gathering info on them.
HAve a friend with secondary MDS who has been gathering info and getting more and more encouraged by their progress.

[Suzanne]

thanks Neil, I have seen the discussions about the cord blood tranplants on this forum. So far my goal has been to delay the high risk procedures and keep my quality of life as long as possible. It has worked well for me and in the meantime they have come up with new treatments and gotten better at all the transplant types.Hopkins still preferrs that actual bone marrow transplant to the stem cell procedure. There is always more to learn. My main Dr. is in on the vaccine research and becoming known internationally but I have a team that watch my case-all specializing in different treatment areas. I am still feeling totally normal-there is very little sign of trouble in my counts-just the indication in the bone marrow that my immune system is not recognizing the defective cells and killing them off. Hope you are feeling stronger every day.

[Author]

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