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View Full Version : I need help, mom needs to start treatment


Suzanne
Thu Jul 3, 2008, 09:46 PM
My mother was diagnosed with MDS in March, considered to be RA low risk, no chromosome abnormalities. About a month ago, hemoglobin really started to drop and white cells also...Hemogloblin down to 6.5, WBC 2.1 platelets normal. Given another bone marrow biopsy and results are back - 8% blasts, and genetics aren't back in yet. She was transfused and her current doctor sent her to someone who was more qualified to treat her. We saw him today and he seemed pretty alarmed and is worried this is moving too quickly. He recommened one of the following:

1. Dacogen
2. Vidaza
3. Vidaza & MGCD0103 trial if we were lucky enough to get in.

I have an appointment set up for my mom to see another doctor (Dr. Raza) on Monday for a second opinion. My question is what does anyone on the board know about the above mentioned treatments. He was really leaning towards the trial, if we were lucky enough to be one of the 50% to get the pill.

I am having a super hard time making decisions about a disease I barely know anything about. My mom is crying because she thinks she is dying. Is there any hope with these drugs? Please any input would be GREATLY appreciated!


edited to add, I am unsure if that is the exact name of the trial he wants to put her on. He said it didn't have a name and was a pill so I googled and got that.

larry gard
Thu Jul 3, 2008, 10:54 PM
Suzanne,

I currently am on Vidaza. If you will scroll down to "Vidaza and Thalidomide Combination Therapy" that I posted on 12/4/06 and subsequent postings on that site for 6/13/07 and 6/17/08 you will find my current status. Also, on the 12/4/06 posting, click on My Story Section" to bring up my history. You have selected a remarkable and caring doctor for your Mother - Asra Raza, MD. I obtained a 3rd opinion from her when I and my wife personally met her in June 2006 when she was at the UMass Medical Center. In August 2007 she transferred to St. Vincent's Comprehensive Cancer center in New York City. When you see Dr. Raza do give her my best. Please refer to her website that I included in my 6/17/08 posting along with other informative websites.

Best of luck to your Mother. In my opinion Dr. Raza is the best!!!

Sincerely, Larry Gard, Cincinnati, OH. I can be contacted by email through the Marrow Forums website.

Birgitta-A
Fri Jul 4, 2008, 05:34 AM
Hi Suzanne,
Dacogen seems not to be as effective as Vidaza so you should choose between Vidaza and the trial with Vidaza and MGCD0103. If it is this clinical trial
http://clinicaltrials.gov/ct2/show/NCT00666497?term=vidaza+mgcd0103&rank=1
all patients get active treatment with a good drug :). The problem is that the doses may not be the best for your mother - eventually too high doses for her bone marrow :(. Then Vidaza is given sc :( though iv seems to give less adverse effects. It is really a difficult problem.
Kind regards
Birgitta-A

ESeda
Fri Jul 4, 2008, 10:41 AM
Hi Suzanne,

I feel we are in the same situation. My wife Nellie was recently dx with MDS Intermediate II, with 6% blasts and chrom abnormalities. We made the decision to start Vidaza with Procrite injections. For the first time in several months her HGB climbed up to a respectable 10.2 w/o added transfusions. We feel the Vidaza did the job. We will continue for two more cycles before doing another BMB. My hopes are the Vidaza will reduce her blast level, therefor slowing the progress of the decease.

Nellie has had no side effects and is already feeling stronger and with that more optamistic. Inform yourself as previously suggested and present a calm demeaner for your mom to feel calmer. Seeing an MDS specialist is the best thing to do. Wishing you and yours all the best.

Eli.

Suzanne
Fri Jul 4, 2008, 12:09 PM
Birgitta
Can you explain that to me again? I am very confused. The doctor didn't mention varying the dose of Vidaza only that it will be given over the course of 10 days not 7. What is your opinion of that trial? He did say it was a 50/50 chance we would get just vidaza and not the 3 day pill.

suzanne

Suzanne
Fri Jul 4, 2008, 10:14 PM
Just to add, I actually saw the bone marrow biopsy report today and I am EXTREMELY alarmed to say the very least. My question is when the blasts move off the 5% mark with the report be including the words AML all over it. I saw reference made to AML at LEAST 3 times and one area that even said it wanted a better smear to determine whether this is AML or MDS. Is this treatable? Is this the same thing everyone else has on this board or something different? I feel the weight of the world on my shoulders right now.

Eileen
Sat Jul 5, 2008, 11:30 AM
Hi Suzanne,
Vidaza has been working wonderfully for me .DX Sept 2007 MDS RARS
vidaza shots in stomach 2 per day for 7 day every 28 daysf or 7 months,now IV vidaza for 5 days every 28 days.Much better.HGM went from 8.1 10,2007, 6 units of blood in 6 wks .since then,no transfusions,& HGM is usually around 12,under that i get a shot of procrit.brings it right up.
I know it`s scary ,but there is good medical help .hope this helps you & you Mom.Keep this moment special.:)
Eileen

jaygard
Tue Jul 8, 2008, 12:07 PM
My mother was 62 when she was finaily was told she had MDS.. It took about a year before the doctor finaly sent her to a Hemotoligst
She did take Revlimid. It did nothing. she is doing good right now she is 65 now with no medician.. But the only cure is a BMT. All these drugs do is just a way to prolong your life a few years. BMT is the only real chance right now.. this is a good site to read from a women who is cured from MDS

http://www.mdssurvivor.com/

there are a lot of people like this.. Drugs compainies are not trying to find a cure there is no profit in this.. just trying to find drugs to keep you living longer so you can keep taking the drugs.. She will either goto
http://www.mdanderson.org/ or http://main.uab.edu/bmt/show.asp?durki=50890

My mom is in denial about her condition and she had been tell me that she was doing better. But her sister talked to me and told me the last doctor appt the Dr. told her that she had a bout 15 months left and would have to have the BMT... BMT will cure or kill. I have cried every day.
My mom tells my father she is doing better and me this for the past 2 years..
jay

Birgitta-A
Tue Jul 8, 2008, 04:48 PM
Hi Suzanne,
When I look at the link to clinical trials
http://clinicaltrials.gov/ct2/results?term=mds+vidaza
I canīt find any trial where they give Vidaza 10 days. There is one trial where the give the drug during two weeks but as far as I understand the trials where they give Vidaza 5 days and then wait 23 days before they start again with Vidaza have the best results.

The MDS patients often have a vulnerable bone marrow and the healthy stem cells need time to recover between the Vidaza treatments.

If your mother is offered a trial with Vidaza and/or MGCD0103 it could be good for her to be in a trial because both drugs are effective (but as other members write there is no cure except stem cell transplantation.

If she only is offered to participate in a trial with Vidaza it is perhaps better to let her doctor prescribe Vidaza individually - then he/she can decrease the dose if it is too high for your mothers bone marrow and then she can get it iv (in the Vidaza/MGCD0103 trial Vidaza was given sc).
Kind regards
Birgitta-A

jaygard
Thu Jul 10, 2008, 11:12 AM
Survival Rates

Up to 60 percent of patients that receive bone marrow transfusions achieve long-term survival.
Treatment Strategies

* Allogeneic hematopoietic stem cell transplantation (transfusions using marrow, peripheral blood or cord blood from a compatible donor) is the most effective form of treatment for most types of myelodysplasia

Suzanne
Thu Jul 10, 2008, 12:11 PM
Mom went to see Dr. Raza on Monday and it was probably one of the most upbeat appointments we have been on to date. I actually felt that this woman cared and was going to do everything to make my mom's life better and hopefully longer. Unfortunately, her platelets are low now too...so that makes all 3 that are having issues now. She did say that a BMT wasn't an option for my mom because she would certainly die from it. We go back on MOnday and she will lay out a treatment option and more than likely do another BMB. Thanks for all the support I get from all of you.

Suzanne