Husband Vidaza or not?
September 16, 2005 at 12:05 am #8702TerriMember
I don’t see in any harm asking before making an appointment how many patients they treat for MDS as a start. We were lucky my daughter referred us to this group of drs and we just ended up with the one we have and I Thank God for that every day. He is so goodSeptember 16, 2005 at 9:27 pm #8703
Well, 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 pleaseSeptember 16, 2005 at 10:02 pm #8704
I think one of the best ways to find experience with MDS and AML is to call the patient liason in the MDS Foundation 800-747-2820. You might also try patient services at 800-955-4572 for The Leukemia and Lymphoma Society. Go to http://www.clinicaltrials.gov and look under MDS and AML for any doctors working with drug trials in your area. This sould be a start. I am surprised that a oncologist or hemotoligist in your HMO can’t give you a recommendation. This disease is rare but not that rare!September 17, 2005 at 12:27 am #8705
I think I would look into changing to medicare and a suppliment immediately at his age if the HMO is limiting treatment.I am still confused about whether you are talking about the medicare HMO plan or an independent one. There are also some appeals prcessed on some of these plans.Just make sure he is ok for coverage for a pre-existing contitionsince since I gather he did not take it when he was first eligable. Do you have a state of county office for help and advice for Seniors? I know Md does. If resources are limited you might qualify for medicaid.Check out what you qualify for that might help. It takes asking lot’s of questions and being persistant. The patient liason at the Mayo clinic near you might be able to help come up with a plan so you can go there.September 17, 2005 at 11:00 pm #8706
we 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.
FranSeptember 18, 2005 at 1:08 am #8707Sandy MMember
fran, I don’t live to far from your daughter who lives in Sacramento, anyway, when my fiance sought out a second opinion we went to the best, Stanford Univ. and Dr. Greenberg, it is in Palo Alto ca. and is very well known for their M.D.S and hemotology experience, they are a center of excellence..so if you can make it Ca. it’s worth looking into, Dr. Peter Greenberg is the guru of M.D.S ….in Ca.September 18, 2005 at 1:36 pm #8708
Fran, At least with no dramatic progression in the 8 months you have known about this you might have some time to try to find a way to get a better opinion about what to do. And with such slow progression and so many other health factors supportive care and waiting and watching might be the best treatment for now.September 22, 2005 at 1:54 am #8709
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.
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