update

[Suzanne]

I just had another blood check with everything looking good.1 year and 8 months in remission and 4 months off all medication. My new schedule is CBC’s once a month and there will be a BMB (ugh!) every three months for a year from when I finished the Zarnestra.(I figure 3 more with the next one already scheduled for Sept) Then they will go to six months. The only problems I am having are a combination of yeast infections and shingles that they tell me is not at all unusual after compromised immune systems and chemo. Hopefully we are getting close to getting them under control-a pain but much simpler then dealing with AML!.
I am working part time without any heavy obligation so I can take time to do things I want to do and enjoying it.
For those of you who are new to the forum and are hearing that “6 months to a year life expectancy” and no cure except for a BMT, there is hope. I heard that too, moved on to a trial and then to heavy chemo and another trial and here I am. In Nov. it will have been 3 years since I heard that 6 monthe to a year and I have enjoyed living almost all of it. So hang in there, find good experienced doctors and go for it one step at a time.

[doreen]

Suzanne, Good for you! I am so happy for you and really, you are a good inspiration for us all with MDS. All my best always, Doreen

[kerrylai]

Suzanne:
I am really happy for you. What a encouragement for all of us.

kerry

[Terri]

Suzanne Good news, Those first days of dx is so scary when you hear all of the statistics. I am so happy I found this forum
Keep it up Suzanne you are doing great and an inspiration to all

[Kathy TN]

Thanks for the positive report – we need to hear the good along with the not good news.
Hang in there and I hope you continue to live life to the fullest and enjoy everyday.

Kathy G

[Ensnee]

Suzanne, thanks for sharing your great news. I’m getting rather panicky in a vague way. Hans is doing extremely well with this round of chemo, but another CMML patient we know, who had transformed to AML and got into remission, has been refused a stem cell transplant here in Toronto because she has unexpectedly relapsed. They say she can not tolerate another round of induction chemo and there is nothing more they can do… And she seemed to be doing so well. Well, I just keep telling Hans, “you are a different case!” Thanks for the encouragement.
And congratulations!

many hugs,
Esme

[Suzanne]

Every once in a while one of us gets to be a different case-that is where those statistics of 25% , 30 % success rate comes from-some of us get to fall in that category and I hope each of you finds a place there-where something works. They certainly are not using the “cure” word for me yet- just increased odds for an unknown amount of time and the possibility of a cure.I still have the risk of relapse but so does everyone who had a BMT or SCT for at lest a few years. They started at the 25 -30% chance once I made it into remission, went to 40% with the Zarnestra and are now up to the 50% speculation since I am past the first high risk year.All educated guess work of course! I just keep waking up in the right side of the statistics.
Someone once said that they thought that the people who had success stopped posting and went on with life. I just wanted to be sure that those of you who are hearing those low % chances of something helping know that even with odds that feel low, you have a chance. And the options and numbers of people who are at least getting better quality of life and more time is increasing.

[Sandy L]

Just what I needed to hear to keep my hopes up.
Thanks and so glad to hear you are doing well.

[Jimbob]

Suzanne,
I am glad to hear that you are doing so well. You are a real inspiration for so many – especially those who can only hope for remission without a current chance for a cure. You sound like you are doing better than many of us who are cured! I am still working hard on beating the effects of the procedures and medications. Even though I am nowhere near it yet, I am looking forward to many years of good health and a high quality of life.
Jim

[Suzanne]

Jimbob, I am watching your progess and I know it takes time to recover from your procedure. I have a good friend who survived a transplant probably 6 years ago at the Hutch and he now feels secure that he is cured & most problems are behind him. You probably have a much better chance for that then I do. Transplant was not a good option for me as it is not for many. Let’s hope we both get those years of good health and quality life and that a lot of others on the forum do too no matter what road of treatment they follow.

[Dinesh]

Suzanne
Iam glad that ZARNESTRA is working for you. You are beating statistical data for MDS survival. I went to Stanford (DR. Greenberg) for consultatin. He recommended ZARNESTRA and if tat do not work Indiction Chemo. My blast is 16% as per Morphology (Manual counting blast) from viewing BMB slides. Flowcytometry (Machine counting) indicates 9% blast. Dr.Please give me your opinion about ZARNESTRA and which test (Morphology or FlowCytometry) is more reliable.

Dinesh

[sarah]

Dinesh, I am somewhat confused. Is flowcytometry indicating blasts in perpherial blood only?

[Kathryn]

Suzanne, I am so glad that you are doing well. I can only imagine how it makes your spirit sing! Stories like yours fill hearts w/ hope and that is SO important regardless what “they” say the “odds” are.

I’m wishing you days filled w/ joy & peace.

Kathryn

[Author]

Posts