Newly diagnosed RAEB-2 in Dad

[Brenda P]

Hi, I’ve been reading the message board for the past few hours and you all have offered great information and inspiration.

My Dad is 78 with no other significant health problems and was diagnosed with RAEB-2 by bone marrow biopsy a few days ago. He’s had progresively worsening anemia for a year (I feel guilty–I TOLD him to get it looked into but never pressured him to, and he didn’t get treatment until his Hgb was 3 and had a transfusion.)

His doctor has set him up for Vidaza treatment in 2 weeks. But I’ve been reading about all these other new drugs (thalidomide and Revilimid, arsenic trioxide, Zarnestra, Enbrel, and other immunomodulatory drugs) and don’t know if these are better options. Anyone have info?

I’m going to recommend he see the U of A center of excellence in Tucson, but there’s no guarantee he’ll do it…. he’s so tired.

[sugarwhale]

Dear Brenda,
I’m so very sorry to hear about your dad. I want to tell you that you’re on the right track: a competent doctor in a center of excellence. The drugs you mention run the gamut from not working at all to working for a long time. If you’ve been reading our Forum, you’ll notice that we’re all different. Vidaza works for some, but not others; and, the same thing can be said about everything else. The new drug Revlimid is pending approval on January 7. It works for TWICE as many MDS patients as the other drugs. This is truly something to look forward to.
My advice is to arm yourself with…knowledge. Learn everything you can. Does your dad have chromosomes involved? Which chromosomes? Are WBC and Plts involved, as well as RBC and Hgb?
Learn the side effects of any medications. They vary considerably. Vidaza only worked for a short time with my mom; initially it made her sick. However, they can give your dad something to prevent this, so it doesn’t have to be a serious side effect. It appears that your doctor is starting your dad out with the drug that is most likely to work and least likely to produce serious side effects.
Brenda, there is something I want you to notice on this Forum: Some people have LIVED with MDS for a VERY long time! Your dad CAN be treated. There IS hope. We welcome you to our Forum and want to share our hopes and dreams and sorrows with you. You’re one of us now.
~~~Janet

[Suzanne]

Brenda, persuading him to get a consultation at a “center of excellence” is the very best thing you can do. They will know the alternatives. There are some statistics about which meds work better for which patients-ie some are more likely to work for those with specific chromosome changes. He may have a better chance with something that is experimental and has not been approved yet. At least going to someone who is an expert in MDS will give him the choices he might have.

[diner]

Dear Janet and Suzanne, Your words of wisdom and comfort to Brenda are a comfort to me also since I just finished my 3rd cycle of Vidaza. Thanks so much. Dee

[Brenda P]

Thank you all so much, for both the info and motivating words.

I’m still finding out about the chromosome situation, Dad has to fax me the bone marrow report. It’s all so frustrating for me because I’m a pharmacist and feel like I should know all this stuff, but I haven’t really kept up since I graduated 10 years ago!

[Suzanne]

Don’t be discouraged. Even my Primary Dr.who deals with a lot of seniors said immediately that she would have to read up on this disease to have any information.My primary referred me to a hemo when she saw a change in my blood counts even tho they were still in the normal range. The local Hemo knew more-at least what it was when he dignosed after a few months and he had done some treatment(more of the “supportive type” but he referred me to Hopkins and said he also sent patients to MD Anderson for drug trials. I am so glad he did. I know I would not be alive today if he had not.

[Brenda P]

One more question, I just got my Dad’s bone marrow report and it looks like the doctor didn’t order chromosome testing. That seems kind of odd since he had pancytopenia… I feel like they suspected MDS and should have done a chromosomal analysis.

Do they usually test chromosomes with the first bone marrow aspirate? Does he need to have a BMB done again to know about his chromosomes?

[Suzanne]

My reports come in two sections. It takes longer for the cytogenetics results-for me it has been a week after the first report comes in. Let’s hope they did the tests-just no results yet.

[sugarwhale]

Dear Brenda,
I agree with Suzanne. My mom’s last BMB gave results about a week later. Incredibly, it took us SIX WEEKS!!!! to get the chromosome report. Why? I dunno.

Dear Dee,
You’re most welcome. My mom DID say that the nausea from Vidaza was less on about the 3rd cycle. Just remember: if it stops working, there’ll be something else!

~~~ Janet

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