Husband Vidaza or not?

[Fran]

Should my 73 yr old husband Jim have Chemo (Vidaza) or not? He has no symptom’s other then being tired. Last blood test revels 10% myeloblasts cosistent with a high grade myelodysplasia. Chromosome analysis shows a male chromosome complement in which 3 of 20 cells analyzed had an extra copy of chromosome 8. I do not understand any of this. Can someone explain what is going on with my husband? Please I need help. thanks Fran

[shirlsgirl]

Hi Fran,

I’m so sorry about your husband’s diagnosis. This forum is a terrific place to come to get answers to all MDS related questions from people who have been through it and understand.

Is your husband being seen by a doctor specializing in MDS? Do you know what classification of MDS? My mom hasn’t tried Vidaza, but a few people on this board have had success with it.Try putting the name Vidaza in a search (red word search in top right of page) and you’ll get alot of info. that will help.

The myeloblasts are immature wbc’s and normally they are only found in the bone marrow where blood cells are formed (0-5%), not in the circulating blood. The doctor is suggesting Vidaza to lower the blasts as these cells are ineffective wbc’s as they are so immature.

I’m sure that someone with some experience with the drug will be replying soon.

Take care and please keep us posted

Jody

[ali_clare]

Hello Fran,

I am 26 and my fiance (34) was diagnosed with MDS (raeb 18%) he has had his first round of chemo but did not get remission so he is now on his second induction with mylotarg. I am familar with your husbands diagnosis but being 73 I am not sure of how he would take the chemo although I have heard mylotarg is proving very effective for elderly patients.I am not a doctor so I think it would be best to speak with someone who is qualified. I am not sure where you are in the world but here is the number of leukaemia care they are so supportive and will give you the information you need. The number is 0800 169 6680

[eve]

hi fran

no one can tell you if your husband should take vidaza – it is a decision he has to make after discussion with a doctor that he has faith in – it is very important that he has a doctor that is very familiar with mds, who will explain things and give him all the options open to him with their benefits and side effects

my dad’s experience with vidaza has been favorable although not a complete sucess story – it has definitely decreased the need for txs

good luck
eve

[margota1]

Hi Fran,The more you read and search the better you will be. You really need a doc that knows MDS as there are so many aspects to this. I have found a site that was helpful to me in understanding what part my husbands chromosone abd. was playing in his MDS and predictions for how this was likly to progress. It’s http://www.slh.wisc.edu/cytogenetics/index
This site as well as the aamds.org site will be a good place to start. The treament options are many and with MDS there is not just one treatment but many. My husband did not have good results with Vidaza but many do. Good luck and keep coming back. Many folks here have alot of information that could be be helpful. Margot

[Fran]

I want to Thank all of you for your letters to me, regarding my husband’s condition. Since we are on a HMO…there are no Oncologist that knows anything about MDS. Don’t know where to go from here. We live in the Phoenix, AZ area and money is an object. Social Security and the few dollars I have only goes so far. Any information would help. We are going to a Cancer support group meeting on Tuesday. Maybe they will have some info for us.

Thanks again. Fran

[Sandy L]

Hi Fran,
I know exactly what you are going through. I hope you get some positive advice at the support group. Isn’t you husband on medicare? Do they limit where you can go for treatment? I do not know much about it except that I too envy all the members of this list that can go to a center of excellence for the best treatment. We have to pray that he gives us many years with our spouses and that the doctors that we are using can give us the time we so desire. I will be looking for more posts from you. Good luck

[Suzanne]

Try Oncology/hematologists. And if you are on an HMO plan through medicare there should be a way to be referred to a specialist when one is needed. The problem is that for years they have just given what they consider “older people” supportive care with this disease.Most hematoligists will have some experience with that. However new developments in research are showing some success with patients in their 70’s so you need to insist that there are treatments that might help him if they will refer him to someplace where he has access to doctors with knowledge and experience.

[Fran]

Thanks Suzanne: We are trying to get into the Mayo clinic here in Scottsdale. we are asking are dx for a referral. Hope we get it. Jim is waiting to start any treatment until we see someone at the Mayo. Jim has RAEB-2 now.

[Terri]

Finding a doctor you are comfortable and have faith in is very important as well as the Experience in MDS. We feel we have found an excellent hemotologist and are very confident in him. My experience is unless you can locate close to a Center of excellence and have them treat you for the entire disease go around i would prefer my Local. We went to a center of excellence and since we were not really on going patients there I feel like they just sluffed us off. We were looking to invest time as it was out of state but they didn’t even seem like they wanted to give us that option. Unfortunately since we were coming in from out of state and I did not have someone refer us to a specific doctor they put us in a pool and the next free doctor fit us in, she has more exp with AML not MDS. Everyones experience is different.
SO Far Bob is doing well with the treatment he is on here
I wish you the best, prayers are with you

[Suzanne]

Fran, Hang in there and get that opinion from Mayo. Sounds like you are close enough so being treated there would not be too hard if you choose that. I was referred to a specific Dr. that My local Hemo had worked with but since I have now been treated at a center of excellence for almost 3 years I have gotten to know several of the doctors there that work with MDs and AML. My experience has been wonderful. Scary at times of course but the whole place feels like family to me. However, the first time I went for my first consultation it did feel impersonal. After they had run their own tests, given me advice on alternatives, watched the progress of my disease for a while and I became a regular patient there everything changed. I like my local Hemo too but the staff of Hopkins saved my life-no question about it. Now my experience at NIH was a whole different story. They did not seem to want to get envolved with my case and said that they did not think any treatment would work for me.Others have had positive experiences there. So people are right that you have to keep looking until you find the right place and Dr. to go to for treatment and advice. Even though you do research to understand the disease, It is too complicated to expect to make your own decisions without advice from someone who is knowledgable, takes the time to explain the alternatives they recommend, and that you feel comfortable trusting to watch out for your husband’s best interest. I had RAEB 2 also and I am still here to talk about it so have hope, think positive, and do everything in your powerer to get the best care possible.

[Fran]

Hi: Thank you so much for all your support. We went to the Cancer support group here and they were not very helpful regarding MDS. No one knew anything about what Jim has. Since we are on a HMO, it seems that none of the Oncologist know about MDS either. Jim will pick up all his reports on his blood test tomorrow and then we don
‘t know where to go from there. If anyone has an idea, please let me know.

Thanks again for your support. Fran

[Donna]

Hi Fran, gosh I sure feel your frustration. I live in Canada, no where near a Centre of Excellence, my mom saw a hemotologist at one of our local hospitals. The closest centre for us would’ve been Seattle. If we were rich people I would’ve gone there but not having the money effected that decision. Could you try contacting the patient liason here at the MDS Foundation. I believe her name is Audrey Hesson? – maybe she can lead you in some direction.
My mom was only 62 when she was diagnosed and they told her she was too old for any treatment other than regular transfusions. Can you believe that?

Take care Fran,
Donna

[Suzanne]

I guess you are frustrated. Maybe I misunderstood where you were going. I thought the Mayo clinics in different areas were connected and that you were going to a place at least connected to a center of excellence. There must be someone on the forum that can suggest a place for you to go near Pheoenix. Calling the MDS Foundation is a great idea.

[Fran]

HI-i’m Jim, Frans husband. Thanks for all the info you have given to her. How do you find out what experience a doctor has before you go through the appointment process? Seems we put out a bunch of copayments and don’t get mucn results.

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