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Fran
MemberHi all:
Well, husaband Jim is finally going to a Oncologist that he likes and will be starting Vidaza on the 10th of November. My daughter wants us to fly out to Sacramento and spend Thanksgiving with them, but I don’t know how Jim will take the treatments. He will be on Medicare plus United Health and the Onclogist said that it will pay for the Vidaza. I sure hope it will because it is costing us 200.00 a month more for health insurance.
Fran wifeMemberHi Barb:
So sorry to hear about your husband. Hope he comes home soon and feels better.
My husband Jim is starting Vidaza on the 10th of November. The Oncologist said that it might help but does have side effects, especially the liver. He is 73 and I worry about him and what he is going through. Right now he had a bone marrow biopsy and lots of blood test.
FranMemberHello Naomi:
Husband is 73, diognoised with MDS about 3 months ago. Will start on Vidaza Nov. 10th. He hasn’t had a blood test for over 1 month now and the DR still wants to start him on Vidaza anyway. He has a bad heart and he only gets tired sometime. Any idea’s on what he can do would be appreciated.
Thanks..His wife…FranMemberHi 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
MemberHi 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
MemberDear 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
FranMemberHi 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. FranMemberHi 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
MemberHi 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.MemberHi All:
Thank you for so much advise and help. We really appreciate all of your concerns. We are still hoping to get into the Mayo Clinic here in the Phoenix area where we live. Jim has had only 2 blood test and so far he is only tired..no other signs of MDS. We will wait and see.
Memberwe went to our primary care dr. and he said to get out of the HMO and try Medicare plus AARP. He can then maybe be able to get into the Mayo clinic which is about 1 hour drive from are home. We live in a retirement community. We are also trying to get a 2nd opinion through are HMO. Sofar, Jim has not been on anything and other then him being tired..that is all that seems to be wrong with him. We did get a copy of al his blood test and boneMarrow biopsy. He also has coronary artery disease, hypertension, diabetes. He already has spent 8 months with this disease without any definite progression.
So that is the sad story regarding my husband Jim. I appreciate all the help we can get now.
Thanks again to everyone who has answered me.
Fran
MemberWell, we are still trying to get a referral to the Mayo Clinic but so far, no results. My daughter lives in Sacramento, California and she said we might be able to get into Davis Medical. But Jim has to get out of the HMO and go with Medicare plus AARP maybe. This way he can see other dr. that are not on our plan. These HMO’s really Suck!! and I am really frustrated with all of this…..Help someone please
MemberHI-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.
MemberHi: 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
MemberThanks 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.
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