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by Freddie8511 on Mon Jun 18, 2012 03:12 AM
Just a heads up. I called Mayo's Clinic in Phoenix, AZ, in May. I wanted to see if they would take my husband Freddie as a patient. He was diagnosed with Multiple Myeloma last year at the age of 66 and is now 67. When he retired we felt he didn't need a supplement as he had VA and Medicare. The Dr. at the VA will not allow Freddie to have a stem cell transplant and will only give his patients Revlimid. Freddie didn't do well on it and althought I hate to use the phrase - his quality of life was nil- nausea, fainting, chemo brain, cramping of hands, tremors, numbness in limbs, no energy. After 5 months, we decided to get a 2nd opinion. Unfortunately, his VA doctor also worked at the hospital we went to. The doctor we saw, tried to talk the VA doctor into allowing Freddie a stem cell transplant, but he will only allow his stem cells to be harvested. The 2nd opinion cautioned us that if we don't get the transplant before Freddie is 70, he will not be allowed to get it even with his own stem cells. That's when I decided to call Mayo Clinic in AZ. I was told that they do not take Medicare patients. I then tried calling Cancer Treatment Centers of America. I got the same answer. I asked if this had anything to do with Obamacare? I was told that with the current economy, their doctors had to make the heart wrenching decision not to take Medicare patients. So be forwarned. God bless, Freddie's wife
by gibby56 on Mon Jun 18, 2012 05:57 PM
These kind of things make me so mad!!! I would fight the VA on this if you feel there is a better treatment or they are not acting in the best interest of your husband's care.
See if the MM specialist who recommended the stem cell transplant would write a letter for you to use and appeal higher up in the VA on behalf of your husband.
Check out http://www.myelomabeacon.com/forum/barlogie-rajkumar-debate (there are 5 parts to this debate) and ask if the VA Dr. would at least listen to it and reconsider your husbands treatment.
I would also get in touch with the International Myeloma Foundation and see if they can help you: http://myeloma.org/
You may also want to get on the http://acor.org site under the myeloma group and ask those who are currently being treated through the VA if they can help you or have a recommendation.
There are also other chemos if the Revlimid is not working.
You will have to be a squeaky wheel on behalf of your husband.
Caregiver of beloved hubby, Terry
by mmsurvivor on Mon Jun 18, 2012 09:22 PM
Sad But true. There are agencies who do help in these things and the poster above gave good advice.
by andy73 on Wed Jun 20, 2012 10:51 PM
My grandmother returned last week from Mayo in Rochester. She has Medicare, they didn't have a problem with that. She was diagnosed with primary Amyloidosis
by Freddie8511 on Thu Jun 21, 2012 05:37 AM
Was your grandmother at the Mayo hospital or clinic? The hospital accepts Medicare. Also, had she been a previous patient and grandfathered in? Finally, does she have a supplement to her Medicare. If she does, they will accept her. Thanks for your input. God bless, Freddie's wife
by Freddie8511 on Thu Jun 21, 2012 05:45 AM
Thank you so much for your excellent advice. I didn't have these links so will definately check them out. The 2nd opinion went directly to our VA doctor and got him to at lease let Freddie get the stem cells harvested, but no transplant at this time. The 2nd opinion told us that if Freddie doesn't have the transplant before his 70th birthday, he will not get it - even with his own stem cells. We're feeling forced into a time crunch since he will be 68 this November. Thanks again Cary, God bless, Freddie's wife
by andy73 on Thu Jun 21, 2012 12:46 PM
she was at the Mayo clinic, it was her first time ever being there. She doesn't have a supplement to her Medicare
She was getting diagnosed, but not treated. Not sure if that makes any difference. They prescribed medication and she will get that from her GP where she lives, but she won't need to go back to Mayo unless there are serious complications
by Hophop4 on Thu Jun 21, 2012 02:37 PM
I am on Medicare and have a supplement and go to MDAnderson and also a local Oncologist and all my bills have been paid 100% between the two except for prescriptions. Had a SCT in 2009. Not involved with the VA, hope you get them to ok your SCT.
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