Newly diagnosed MDS RAEB – advice needed

[jen06]

My dad who is 66, has just been diagnosed with MDS RAEB (am not sure if it type 1 or 2). We live in the UK, and he has just been accepted to do a clinical trial of 5-Azacytadine at Kings College Hospital in London, which I think is the same as the drug Vidaza. This drug is not yet approved in the UK. From what I can make out, he has not actually asked a lot of questions about his condition, so we are unsure of how advanced it is at this stage. They have told him there is up to a 50% chance of the drug working, but he could only stay on it a maximum of 18 months due to his age/health. The doctors have talked to him about the possibilities of doing a mini transplant at a later date, and as has seven siblings, they feel that he has a good chance of a donor match. However, from what I have read on the internet, RAEB has not got a very good prognosis, with or without a bone marrow transplant, and the average survival times seems to be up to one year. Really, I am just looking for anyone who can offer any advice or information at this time, I realise there are very few details to go on, but am just trying to prepare myself and gather as much info as possible at this time.
many thanks.

[maueenh]

Jen,

My dad was just diagnosed in May 06 and is being treated with Vidaza and responding. There is alot of information on this website so the best approach may be to just search around and read various posting etc. Much of the information on the internet is outdated. If you can get a better understanding of your dad’s diagnosis (affected chromosomes, blast %s, etc) you can look into various treatments that are available now Vidaza, Revlimid and Dacogen. My understanding is that bone marrow transplant or stem cell transplant have the potential of putting this disease in remission but I will let others comment on that since I am really not familiar. I too came to this forum feeling lost and hopeless and have found a wealth of information and much support.

Maureen

[patti]

Jen,

The first best thing you can do is ignore the statistics you see on the internet about survival. These are very outdated and in the past two years many treatment options have become available.

Maureen is right about just reading, reading, reading. You can do a search of this website for specific questions or you can just start reading. You’ll find a wealth of info.

My MIL was diagnosed with RAEB-2 (was RAEB-t back then) two years ago this month (8/4) and she is doing remarkably well these days. I can’t comment regarding the vidaza as we chose to go the natural route but many others have tried it and have had success. My only suggestion would be that whatever mode of treatment your dad chooses, he will help himself immensely if he eats a very healthy diet (no white sugar/flour, organic foods, etc) and takes care of his body well.

All the best,

Patti

[GL]

Dear Jenny,

My mother is with King’s College too (her doctor is prof. Mufti). She has RAEB as well, but they did not offer any Vidaza clinical trials to my mother or discussed mini-transplant possibilities. I wonder, why. Do you know what are your father’s blood/BMB test results? Who is your father’s doctor?

Yes, best to do now is to try to learn as much as possible and support your father through diet, etc. Do you know about Bristol approach?

Best of luck.
G

[jen06]

Many thanks for your quick replies. It is really comforting to know of others in similar situations and that you are not on your own. I now understand about the statistics possibly being outdated. It seems like they are developing new treatments all the time, so I guess it will be a while before they have up to date statistics – anyway I am not going to look at these anymore!
Maureen, I am glad that your dad is responding well to the Vidaza, there is such little known about this drug in the UK, so it is great to read of other people’s responses, especially when they are positive.
Patti – thanks very much for your info and advice. To be honest, I didn’t even realise that you can try to fight this disease with natural medicine, and it is comforting to know there are other options available. Hope your MIL continues to do well following this route.
G – My father’s doctor is also Prof Mufti. I do not know why your mother was not offered Vidaza. My dad had to go to Kings 2 weeks ago for tests and then back again yesterday for the results,which is when they told him he was suitable for the Vidaza trial. I do not know his blood/BMB results, but will try to find out for you if I can. They did tell him if he was not a suitable candidate, he would be offered alternative treatment, but did not go into detail. From what I can make out, they have caught his disease at the onset, so I dont know if this has anything to do with it. What sort of treatment is your mum getting?
Also, I will try and get his diet improved as it is not particulary healthy at the mo! I do not know about the Bristol approach – what is this?

Thanks again for all your help, I really do appreciate it. I am away tomorrow for six days, so do not think I am being rude and ignoring posts!
many thanks
Jen

[Neil]

Hi Jen,
RAEB is one of the more serious classifications.
But there are certain aspects that should be considered and discussed with Prof Mufti ( he has an excellent reputation dealing with MDS)
One of the mose significant risks is an increase in blasts in the marrow. How do they plan to keep marrow blasts from increasing?
Another more serious risk occurs if blasts reach the peripheral blood. How do they plan to keep blasts out of the peripheral blood?
Have they considered some of the “less toxic” chemos to reduce/control blasts?
Vidaza has been successful on about 18% of the patients that have tried it. What is the plan if he is one of the 82%?
Another risk is decreasing RBC/HGB. How do they plan to support his red cell counts?
A mini transplant might be an option but there are a number of questions that need answers.
Does he have a sibling who is a matched donor?
How many transplants of this nature have they done on 66 year old RAEB patients?
How many were successful for more than 5 years?
Does he have any other health issues (heart, lung, diabetes etc) that might complicate a transplant?
IF—they can keep his counts stable for an extended period with Vidaza, Procrit, Neupogen etc the mini option might not be a wise choice.
There have been a few RAEB patients who concentrated on keeping their counts stable with drugs. There are some who changed the prognosis numbers. Remember some of the mortality figures are pretty old. Recent drug developments and treatment options have made some of those statistics obsolete.
Have a very candid relationship with his docs. Ask questions and more questions. Develop a very solid knowledge of MDS particularly RAEB. Go to the home page for this site and scroll thru the educational information link. Theres tons of info to absorb.
Keep a chart of his WBC, RBC. HGB, Platelets and blasts.
I put them in an EXCEL spreadsheet with the counts on the vertical axis and the dates on the horizontal axis. Then put them on a graph. Its very easy to observe long term trends in counts. Very easy to react to trends when one can see them over time

[katiebear]

Jen,

My dad was diagnosed with RAEB2 in March of this year. He just completed his 4th round of Vidaza this past Weds. He goes back to Sloan on Sept. 6th for his BMB. His doc is hoping to get his blasts down with the Vidaza so he can have a mini transplant. My aunt is a 10/10 match. He will be 66 in Oct. Everyday I read about this disease and try to learn more. I don’t have the knowledge most of the other members have on this forum, but I wanted you to know that you’re not alone.

Katie

[franm]

Hi Jen:

My husband was diagnosed with RAEB2 in 05. He is on Vidaza going on the 4th round on the 31st. The first round was pretty bad, because the Onc. was being aggresive. She cut down the amount by 25% and he has been feeling much better.

Do what we do…Take one day at the time and really enjoy the time he feels real good, which should be the days after the chemo. We hope to go away for a few days inbetween the rest period.

I wish you the best of luck.

Fran

By the way his BMB was 29 and we are hoping that the next time he takes it we will see a big drop. Onc. wants to wait until he finishes the 6th round.

[jen06]

Many thanks for all the info and the replies – it really does help to know he is not out there on his own. He was supposed to start his first round on Vidaza on Tuesday, but the hospital phoned and said they didn’t have a bed available (he is staying in as an in patient), so we are waiting and hopefully it will be anyday now. They have warned him that this first round could be a bit scary! I have no idea what his counts are but will hopefully be able to find out from his nurses once he starts his treatment, and will keep a record as Neil says in his post. Good luck to you all, keeping my fingers crossed!
Jen

[Russ]

Jen, It’s a bit different in the US – when I had Vidaza, I went in for 7 straight working days and got an injection on both sides of my stomach.
There was no need for a bed, I just drove home.
My prayers go with you and your Dad – you are not alone.

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