Topic: MDS Remission

I am a three year + survivor of ICC.   However, last fall, my blood counts started dropping dramatically and fast.   I have posted about this under General Discussion, (I think that is where it was).  I was diagnosed with acquired MDS, which means I have a bone marrow failure caused by the Gem/Cis I did post resection in 2014.    And...of course, it is another rare cancer. 

I have been doing infusions of VIDAZA,  the only treatment available to me, for the MDS.  It is 5 days a week, and then three weeks off.  This has been since Dec 19th, 2016.   I was very ill for about 2 months and then the blood counts started to change for the better.

This last week, April 4th, I had a second bone marrow biopsy and the results I was given on Friday at Mayo showed that I am .....IN FULL REMISSION!!!   The chances of this happening, I also found out, were not the 50% as I had originally been told.  Because I have the acquired version of MDS, the chances of remission were only 15-18%.   YIKES!

I will not have to go back to Mayo or have another bone marrow biopsy until the MDS returns, which will eventually happened.  I was told yesterday, that could be in 3 months, ....or a year....or 2-3 years...or occasionally someone gets to 4 or 5 years.   However, my reading says that for people with the acquired version,  the VIDAZA often stops working much sooner. 

Right now, there are no other treatments available , so when the VIDAZA stops working, the only thing left will be a Hail Mary move.....a possible trial, though few of them will take me because of the underlying ICC.   

Meanwhile, I still have to go back to Mayo for my scans for ICC, the next of which will be May 5th.  I really need to not have a recurrence or met of the bile duct cancer as that would be a game changer.   

For now....I feel the best I have felt since last August, when all this MDS stuff started.....and today....I'm having the  5 year old grandson over for a play date with grammy.   smile.  Not living desperately.....just living.   

Julie

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: MDS Remission

Good fight Juile! Glad you are better. Your in my prayers.

Bob

Re: MDS Remission

Julie, YES, YES, YES, YES, YES, YES, YES, Yes      What else can I say? Our Miracle called Julie!!!!!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: MDS Remission

I am glad that you are feeling better compared to last August.  You take your great days and enjoy life.  I wish clinical trials would not be so strict and include patients who really need alternate treatments.  Take care of yourself daily with good nutrition, happy moments, and hope for other treatment options.

Re: MDS Remission

Julie....I am over the moon for you (and us.) 

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: MDS Remission

Julie that is awesome news!  So happy for you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: MDS Remission

So pleased to hear the good news!  You finally get a break! 
Big hugs,
Brigitte

Re: MDS Remission

Julie....you just know to make our day!!!!!!!

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER