Mom had allo-SCT to treat secondary MDS (RAEB1). Relapsed at 60 days and now has AML
 

Hi everyone,


My mom was diagnosed with MDS back in August, 2010. She had RAEB-1. Her MDS was secondary to her original cancer. She had stage IV bartholin gland cancer, which she managed to beat. She did a round of Revlimid and that failed. Her blasts were 8% at that point. Then she did a few cycles of vidaza and she responded pretty well to that. Her blasts were still the same, but her counts came back up and she was no longer transfusion-dependant. We decided to pursue a BMT at Moffitt. She got a perfect match with an unrelated donor. She tolerated the conditioning very well. She engrafted and her counts came back into the normal range. Her first bone marrow biopsy looked good, but there were still two bad chromosomes in the marrow. She had acute GVHD of the gut and still does. Suddenly, her counts started dropping, so they did another bone marrow biopsy last week (about day 60 post transplant). We were called in for an emergency meeting with the doctor a couple of days ago. There we were informed that her transplant had failed. She now had 39% blasts in her marrow and had relapsed and now had AML!


As you can imagine, we are completely devestated. Because she relapsed so soon after transplant, we were informed that her prognosis is extremely poor. Secondary MDS is notoriously harder to treat and more aggressive. She is only 62. We were told she could try vidaza or go for a month of in-patient chemotherapy in the hospital. We were also given the choice of doing nothing. BUT, whether she receives treatment or not, the outcome is pretty much the same. Due to the various factors affecting her disease, we were told her prognosis is months to a year at best. It was completely unexpected and shocking. She chose to go on the vidaza anyway since she had been on it before and it can't hurt, but the docs do not expect it to help. She doesn't want to spend a month in the hospital at this point and frankly, I really can't blame her.


I don't really know what I am looking for here. I am totally at a loss. I never really considered that the transplant could fail...and this soon...and with such dramatic, tragic results. It's heartbreaking...

I am so sorry to hear about your mother. I don't really have anything to offer as a suggestion, but I want you to know that people will read this and if there is something to suggest, most likely, someone will come forward. The fact that your mom came through the transplant so successfully and then to have it fail is, as you put it, is heartbreaking. Is there talk at all about giving transplant another try? Would you consider a second opinion? I know that Moffit is known for Dr. List and his work with MDS, but I wasn't aware that they did transplants. Your mom and family will be in my prayers. I hope someone can offer you more info than I could.

Melissa,

I'm so sorry to hear this news. We've been rooting for a better outcome ever since you first told us about your mom's secondary MDS. It sounds like her doctor was painfully honest with you about the failed transplant and her choices now. After it looked so positive, this is a devastating turnaround and I can't imagine how hard this must be for your family.

Your love and support are so important to your mom now. I hope she knows you are there for her as she makes these impossibly tough decisions. This may or may not happen in your family but I'll mention that some parents may want to push their adult children away to spare them suffering when things aren't going well. Don't let that happen; you need each other.

The doctors never know a prognosis with certainty, so there is always hope. If your mom's condition doesn't improve then I hope it at least stays stable. None of us last forever but 62 is much too young to lose this battle.

Dear Melissa
So sad to know the transplant failed, but perhaps your Mother would qualify for a clinical trial that they are doing @ Cancer Institute of NJ where they are testing a drug that converts AML cells back into useful cells. Check the website for more information, search AML in Clinical Trials, #020702; TPA is the drug. Not a chemotherapy, but a Phase 2 trial, which in my opinion seemed minimally invasive and very doable, provided you could make the trip up North.
I had signed up for this in the summer, then my bmb came back with lower blasts than originally thought.
If you would like to know more, contact me and I will forward you more information.
And remember, where there is life, there is hope. And sometimes test #s are wrong.....Hang in there and try to not panic. There may be more than one or two options out there...keep looking....best to you all...

Dear Melissa,

so sorry for the unlucky development of your mothers transplantation. It seems as if she has her former bone marrow back.

This bone marrow seems to work, - in contrary to the transplanted one... Ok, there is an increased level of blasts now, perhaps before suppressed by Vidaza. Hopefully this medicament will help again now.

In general hematologists are said to be very cautions with prognoses. When they tell you that your mother would live 1 - 12 months, these could be much more! Your mothers´s situation seems beyond any statistics, because her combination of diseases is special. Also she has had much experience with herself in the last years and can cope probably much better with infections etc. than "the average patient".

Please don`t give up the hope for your mother but don`t stress her. For me it was always the hardest job to keep my children in good mood. But your mothers situation is life-threatening. She will be aware that you are in extreme sorrows.

Hopefully your mother will not lose her nerves now, and you can support her for this.. One month in hospital for therapy? Why not? A team of doctors will check her counts and status daily and see her daily.. Staying at home is surely more difficult, in case there would be some troubles with balancing the new vidaza therapy. Does she go to the internet while in hospital? A laptop could distract her...

At home the medical help is not so present; your mother would have to wait in the ambulance together with other outpatients and can catch extra infections..

All the best!

Kind regards,

Margarete