[Fran]

Hi Sdrake:

My husband is 73 and he has been seeing this Oncologist since October of 05. She has been getting blood test from him every 2 weeks and so far she said he is borderline and doesn’t feel he has to start on Vidaza. He will be going in for another blood test next Tuesday and he has an appointment with the Oncologist on the 17th. Hope we find more information at that time.

Don’t know if anything I have siad means anything to you but I am just the care giver for my husband and it is hard for me, because I know so little about MDS.

Fran..Wife and 71 years old myself.

[Fran]

Hi Everyone and a Happy Holiday to you all.

Husband, Jim went to the Mayo Clinic and they told him they had a clinical trail going on there for advanced MDS. He would have to go there for 5 days in a row each month. It would be in IV form and last 1 hour each day. Since he has not started any treatment yet and the clinic is 2 hours away from where we live. He was so stressed out after we came home that he said no to the trails.

No it is back to seein an Oncologist near are home. He has an appointment on the 29th but I am sure she will not start any treatment until January.

I worry a lot. He is 73 years old and I am 71. His age has a lot to do with the chemo that she will be giving him and that really scares me.

Any thoughts on the matter would help.

Thanks..Fran

[Fran]

Dear Margaret:
Jim had trible bypass surgery 2 years ago. Now he has MDS. We finally got into the Mayo Clinic and we will be seeing one of the top Oncologist there on the 7th of December. He still has heart problems and takes lots of meds for it. We are hoping that the doctor will know how to handle the chemo when we see him.
Good luck with your husband. He is a lot younger then Jim and I think he will be fine. Jim is 73 years old.
Have a good Thanksgiving
Fran

[Fran]

Hi Margaret:

I just typed a long e-mail to you and was kicked off by aol. We are changing are provider..hope soon.

Anyway I finally talked JIm into going to the Mayo Clinic. We still haven’t gotton the BT and he took some more Blood yesterday.

We have an appointment with the top Oncologist that deals with MDS on the 7th of December. I hope we get the blood test before we go there

If not they will take some more I am sure. Jim is sending what we have to the Dr. now.

You have been some kind and helpful and I really appreciate that.

There is no support group for MDS here in Phoenix. I already tried and found none.

My children live miles away and are no help. Jim’s son calls him once in a while.

I wish you hope and a Very Happy Thanksgiving.
Fran.
You can e-mail me at dashmaddie2000@aol.com

[Fran]

I am at my wits end. Jim tooo a whol battery of blood test on the 2nd of this month. They called him to take one over again on the 7th. He had an appointment with the Oncologist to start his Vidaza treatments. I think they lost his test and now she post-poned his appointment for another month. I want him to go to Mayo clinic, which is here in Scottsdale but he said he doesn’t want to get involoved with new doctor’s. I think he should go there and see the head Oncologist, since he knows what MDS is. What do I do know? I really need help
Fran (71 year old wife)

[Fran]

I think they lost all his blood test. Don’t know what to do. First he has MDS and then I don’t have any idea why they are waiting to give him Vidaza. He feels fine, other then being tired during the day. We asked for the test and so far have not gotten them from the Oncologist.

What to do? Do you guys have any idea’s?
Thanks for anything you can give us.
Fran

[Fran]

Hi all:

Well, Jim was suppose to start his treatments yesterday. We went to the Oncologist and she read the blood test, which some didn’t come through yet. she said that his immune system was very low and before she startes him on Vidaza, she needs him to build his blood up. she told him to get supper Iron pills OTC, Folic Acid, and liquid B12. So now we wait until next month and another BT to see if he can start on the Cemo. We really like this Oncologist. She doesn’t jump into anything and since Jim has a bad heart she didn’t want him to have a heart attact. So, I think we will stay with her.

He will start his treatments on the 6th of December.

Fran

[Fran]

Hi Dmiller:

My husaband is 73 and he has MDS also. It seems that most of the Oncologist don’t really know much about MDS. Jim will be starting Vidaza this Thursday and I hope that we will know more from the Dr. at that time. They took lots of blood from him last week and even took one of the blood samples over again yesterday.

We live in the Phoenix area, so we can’t help you with information in Ohio.

Fran, wife of Jim

[Fran]

Hi again:
Jim had his blood test last week and the lab called us on Friday after they closed to tell Jim that he has to take one of his blood test over tomorrow. I wish I knew what that meant. He is suppose to start Vidaza this Thursday. I am planning to go with him and find out more information from the MD. We haven’t seen a copy of the blood test yet but will ask for one on Thursday.

Can anyone tell me what it means if they want to take the BT over again?
Thanks…Fran

[Fran]

Sdrake: Thank you. I hope he will be ok with the Vidaza and like I said, he will know more when we see the Oncologist on the 10th. I hope all his blood test are good. How do we get a copy of his blood test?

[Fran]

Well, Jim had his blood test today. They took 7 pints of blood as well as 2 more for his primary care MD. He will be starting the Vidaza next thursday. The nurse said that he will be having the injuections every day for 7 days. The problem being that if he starts on Thursday, what happens over the weekend? Does anyone know how they do that. I am pretty nervious about what to expect. Like I said the only thing wrong with him now is that he is real tired and sleeps a lot. We are still hoping that the Oncologist excepts his medicare and Untied Health plan. We will find out next week.

Anyone that can help me, it will be appreciated.
Thanks
Fran

[Fran]

No life Insurance for either of us. We have been married only 11 years and thought we would live forever but who knew that this would happen. Jim had heart bypass surgery 2 years ago and was told that there is nothing else they can do for his heart. I had a Pacemaker put in this year.
I will keep you all informed on our finances as well as Jim’s progress after the 10th of November when he will start the Vidaza treatments.
Fran

[Fran]

Hi all beautiful, helpful people. Jim is starting on Vidaza on the 10th of November and I am really concerened. He had triple bypass surgery 2 years ago, but the dr said that his heart is pretty bad and they can’t do anything else for his heart. He is also diabetic. He is tired a lot and sleeps during the day but has a hard time sleeping at night. We are going to our Primary care dr. tomorrow but I don’t think he can do anything more for Jim. Since he is 73, they won’t do much to help him. We also need financial help, since we are living on SS only. We have a house and that is not paid for either…so are expenses just keep adding up.

Anyone have any idea, it would really be appreciated.
Thanks for having someone to talk to.
Fran

[Fran]

Hi Linda:
I tried to e-mail you but it didn’t work. this is Fran, the wife of Jim that has MDS. I told you that Medicare will pay for Vidaza as long as you have a supplement. Call or wirte to Medicare and see what they say.

Good luck.
Fran…Jim is starting Vidaza on the 10th of November. I hope it works, since he has a bad heart and is also Diabedic.

[Fran]

Jim,
Jim is 73, so he is on Medicare and the insurance is Medicare plus AARP, which is United Health Care. That is why we are paying $200.00 more. When he was on a HMO, we had to pay almost 1,000.00 per month for Vidaza and Oncologist. By the way we live in Phoenix, Arizona.
Fran

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