I need help

[Fran]

Hi again from Fran:
Well, we can’t get into the Mayo Clinic, so we don’t know where to go from here. Other then being tired, Jim who is 73, has a bad heart and was diagnosed with MDS. Anyother idea’s from any of you wonderful support people? He has not started anything as yet. We will go for another opinion I hope next week.
Thank you for hearing me out.

[Suzanne]

Where are you going for the second opinion. To someone who is experienced with MDS I hope. Is someone watching his counts on a regular basis?

[Fran]

Hi Suzanne:
We have to go for a 2nd opinion with a Oncologist in are HMO. And no he is not watching his blood count. The new MD will give him another blood test I am sure. His bone marrow biopsy that he had last month showed that he had RAEB with a 10% blasts with a extra chromosome 8. His RAEB-2. Since I am a senior..I have no idea what all that means. Maybe you can tell me.

[lindajo]

Fran, Being a senior has nothing to do with it, this disease is a new language. Don’t worry if it doesn’t make sense right now.

Get a copy of all previous blood work before going to the new oncologist. Go out to a link for the aplastic anemia-mds foundation. It is http://www.aplastic.org and ask for a patient information packet. You can go to the bottom of this page click on MDS Website it will take you to the home page of this organization and then click on links and the aplastic anemia-mds foundation has a link there. Their information packet is the easiest for lay persons to read. Order it and read it. The packet is free but any donation you want to make is always accepted.

It will explain the different categories of the disease. RAEB means refractory with excess blasts. It looks like they have already determined that your husband has one abnormal chromosone. That helps the oncologist to determine what treatement may be best for the patient.

Why weren’t you going to Mayo. If your HMO doesn’t cover it ask why and appeal the decision. Your HMO has to generally explain why. It may be that you need the second opinion first and then they will approve Mayo. If you don’t understand why your state insurance department probably has a toll-free number and they can give you guidance. Also look into your state departments for senior assistance. They can also give you help with all of your coverage questions.

Even with a hematologist/oncologist that is experience in MDS they may wait a month to repeat blood counts. Be sure to call your current doctor or GP if your husband symptoms change.
Watch heart rate/ blood pressure and watch for any temperature over 101.1 in the meantime. Good Luck we are here for you.

[Fran]

Hi Lindajo:

So sorry to hear that you have MDS. You are so young. What kind of vitamins are u taking? I hope you beat this disease.

Can’t seem to find any hematologist/oncolgist that knows what MDS is. So far we are just living 1 day at a time and hope that my husband has lots of time to live.

We have been married only 11 years and I would like to keep him at least for another 5 years. We both have lots of kids and grandchildren and want to see them graduate high school.

Don’t have any idea what we will do now or what is in store for Jim and me in the future.

Fran

[Neil]

Hi Fran,
Where do you live? It is possible you will get recommendations from others in your area.
Go back to the Home page for theis site (not for The Forum). Click on Patient Information. It is one of the items you can select on the list on the left column. Also click on Centers of Excellence. It will provide a ist of centers that have extensive experience treating MDS. Most COEs get their rating from dealing with Bone Marrow Transplants, Stem Cell Transplants and conducting various Clinical Trials. There are many other docs out there that have MDS experience that are not associated with a COE.
The primary issue is experience. You want a doc that has experience treating MDS, particularly, the classification your husband has. Its rather unlikely he would be a candidate for a bone marrow transplant or stem cell transplant at 73.
I have had MDS for 8 1/2 years. My doc and others in his practice have treated other MDS patients. His approach to my treatment options seems to have worked pretty well. We not only deal with my present condition, but discuss options for the future, if and when my current counts begin to go down. We currently have 2 steps planned out based on current drugs/treatments. They may change with new info.
Do you have any info on his:
classification
Red Cell count
Hemogloin
White Cell count
Platelet Count
Are there any blasts
Many patients do not get much treatment. Some get Proctit to boost red cell counts. Others get Neupogen to boost white cells. Others get periodic blood transfusions to sustain them.
Lots to consider and many decisions to make depending on his prognosis.
Again, your first step is to locate an experienced hematologist to evaluate his condition and explain his trestment options.
Neil

[JulesH]

Fran,
I don’t know where you live but I go to the Moffitt Cancer Center in Tampa, FL and I meet patients from all over the U.S.
Some of the best oncologists and hematologists in the U.S. are there.
The people at Moffitt are the best.

[Fran]

Hi Neil and Jules:
My husaband Jim tried to e-mail you but he got cut off by aol. So, I will try and answer some questions.
His last diagnosis was 8/25. He has excessive blasts count of 10% upstage him to RAEB-2. He also showed extra copy of chromosome 8 in 3 out of 20 cells. Right now he has no bleeding or bruising and gets tired during the day. We live in Phoenix and do not know anyone that has MDS. We also joined a cancer support group in are area and they don’t have anyone with the same thing that Jim has. Our HMO just sends us to different Oncologist and they all say the same thing. They want to give him Vidaza and that is all. Since he feels ok now, we don’t want to start him on anything that might make him worst.

Any ideas would be appreciated.
Thanks. Fran

[Sandy L]

Hi Fran,

I know exactly what you are saying, however it is very important that it does not turn to AML. Vidaza can help that happen or if it does work then at least delay it from happening. This is the first drug that has any sucess rate with people with chromosome abnoralties. If it turns to AML then you have to get the heavy duty stuff. It is a hard decision. Mike started because even though he had no physical signs his numbers kept dropping and he is probably considered tx dependent now. Hopefully the Vidaza will help him to gain control of his life again. Good luck

[Fran]

Dear Sandy: I sure hope that Mike gets better. Jim is trying to get out of are HMO and go into Medicare Plus AARP. He is feeling out the paper now and will enclose a check. If this works he might get into the Mayo /Clinic. Don’t know if they are any better then the ohter dr. He still has an appointment on the 6th of October to see another Oncologist with copies of all his Blood test. We might know something more then or we might not.

Good luck with Mike
Fran

[Neil]

Hi Fran,
His docs should be focusing on keeping his blasts from increasing. They should then try to get them to decrease. Hew does not want to have any blasts in hie peripheral blood.
Any chance he can get to the Univ of AZ in Tucson? They have lots of experience with MDS.
Neil

[Fran]

Hi Neil:
We live pretty far from Tucson but we are not to far from the Mayo Clinic. Since Jim changed his insurance, he is not on an HMO, so he will be able to get into the Mayo Clinic I hope. They are suppose to have the best Oncologist there we were told. Other then that we Pray a lot. This is the second marriage for both of us and we have only been married 11 years…so that is real hard on me.

We did get a 3rd opinion with an Oncologist from our HMO. He will be seeing her on the 6th of October. He has all his blood test so we might know more at that time.

Take care all of you..i what to hear only good things from you all.

Fran

[Neil]

Hi Fran,
Would hope you can get him treated by a hematologist experienced in treating MDS, particularly RAEB

[Bkwits]

Hi Fran,

My husband,77, started Vidaza this week. I wish he had started when he was a little stronger. It was my husband’s decision. He didn’t want chemo, thought he could get by with tranfusions every few months. Platelet transfusions didn’t work. He continued to get worse and ended up on chemo anyway. We first heard about Vidaza at the hospital when he was getting txs. The nurses told us they have some patients on it that are doing very well. I hope and pray that you get the help you need.
Barb

[Fran]

Hi Barb:

My husband Jim is still trying to find a Hemotologist that knows what MDS is. We do have an appointment with a new one on the 6th of Oct. I am sure he will take a blood test and tell us what the next step will be. The only thing that seems to bother him now is he get’s tried often. No energy..but that is all. I hope things go well with your husaband Joe.

Fran

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