"Unfavorable prognosis"

[Al's Wife]

I was more than a little upset yesterday when I looked at the bone marrow biopsy lab report from my husband's bone marrow biopsy two weeks ago. The doctor's office is using a new lab and they actually wrote on the report "unfavorable prognosis," which the last lab had not done. Does anyone else's lab write the prognosis on their labs?
The doctor said that the last two biopsy results were virtually the same, meaning the Vidaza has not kicked in after four months. So he wants to continue my husband on it for another four months and hope that it will begin to work. If not, we will look at other alternatives like clinical trials, maybe transferring to M D Anderson in Houston for treatment, or something!
He has not had any transfusions to date; and his platelets are at 53. They were at an all time low of 37 two weeks after his last chemo. His red blood cells are holding stable and his white blood cells are not affected yet.
I guess the "unfavorable prognosis" comes from his having RCMD Int-1 with many chromosome abnormalities.
My husband doesn't look at the report and, frankly, I'd rather him not hear that terminology. I guess it's better than having read poor prognosis, but, still, it doesn't sound good.
I know we just have to keep the faith, but it is so hard when every time you turn around you're getting hit with something else.
Have any of you seen that written on your biopsy report? Can you tell I'm looking for anything that is encouraging here.
God bless all of you and your caregivers.
Linda
____________________
Husband diagnosed with RCMD Int-1 on 5/26/10; currently on 5th round of Vidaza with no improvement yet.

[rose mcmillin]

Hi Linda,
So sorry to hear about the report. I know that it can be frightening to see that in writing.

My husbands report said "poor prognosis" so apparently some labs do list their findings. Its been almost two years since we read that on the report and he has done fairly well. He has only had to have one platelet transfusion in all that time.

He has been on Vidaza and we have been blessed.

These diseases are difficult and confusing. Remember each patient responds differently and keep your hope alive.

Wishing you well,

Sincerely,

Rose McMillin

[Birgitta-A]

Hi Linda,
Very uncommon that they write about the prognosis in the bone marrow biopsy lab report - I have never read about that before. As we all know it is almost impossible to tell about the prognosis for an individual patient only by looking at the BMB because age, other diseases and so on have an impact on the prognosis besides response to drugs.

I think your doctor is right when he suggests Vidaza for 8 cycles before you try something else. Here is a study that shows the times to response can be quite long:
“Time to Response
In all three studies, the median number of cycles from the first treatment with azacitidine (Vidaza) to any response (Complete Response, Partial Response, or Hematological Improvement) was three cycles (range, one to 17 cycles). Although 75% of the responders achieved a response by cycle 4, the other 25% achieved a response as late as cycle 17. The majority of responders (90%) achieved a response by cycle 6.”
http://jco.ascopubs.org/content/24/24/3895.full

Al's counts are very good with stable HGB and WBCs . Platelets above 30 are supposed to be quite safe without risk for bleedings.
Kind regards
Birgitta-A
71 yo, dx MDS RCMD Int-1 with 2 chromosome aberrations May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide and Prednisone since June 2010 for bone marrow fibrosis with a platelet count of 22 (last count 63)

[Al's Wife]

Rose and Birgitta,

Thank you so much. Those were just the encouraging words that I needed. I thought I was probably over reacting, but this disease is so scary, that just the least little thing - much less big thing - sends me into a tailspin.
So reading y'alls encouraging words gave me quite an uplift.
It's so hard to keep a smile on my face all the time, for my husband's sake, but I want so much to be a positive influence for him.
Thanks for taking the time to share.

Linda

[Susan L]

Hi - I too have that "unfavorable prognosis" on my bone marrow report, and I agree w/everyone else that you just put any weight into it. I have also been told up to 24 months. I am also on vidaza and now having my second round. I was on dacogen prior to this and it didnt work well for me. Reading that is quite uncomfortable but there are changes that take place, and I just know that the vidaza is going to work for your husband and myself. Keep the faith. Best wishes.