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Well disease has spread and trying to get a new doctor and change in medication including Revlimid. They have been wonderful here! Despite the bad news have some hope that I can get the numbers down and then a stem cell transplant. Worried as some spine, hip and shoulder damage and takes days to get the bio medication sent. Have velcade a day late as needed to travel back home. Wish that weren’t the case as it may not be working well but it is something. Wish Revlimid weren’t so hard to get!

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Replies to "Well disease has spread and trying to get a new doctor and change in medication including..."

I’m so glad you’ve gotten this much needed second opinion! The best news is that Mayo feels your situation is treatable! You’ve had a setback. But you’ve taken the all the right steps to address it and now you have a plan going forward.
I hope you’re able to discuss this with a new doctor and get this started right away.
Would you be able to possibly stay with your current team and have a sit-down with them to see how to proceed? That way you don’t have the hassle of trying to find a new doctor. Remember, after transplant it isn’t practical to return to Mayo just for routine blood tests. So you’ll need a clinic back home for the tests with the results being sent to Mayo.
In my case, my hometown cancer center conferred with my doctor at Mayo pretty routinely, making my transition back home pretty smooth.

You wished that Revlimid wasn’t so hard to get, I’m not familiar with this particular drug. What makes it difficult to get? Availability or cost?
Frequently, if it’s the cost that’s prohibitive, manufactures will have a rebate or grant to defray some of the purchase price.
Also, discussing the med with a representative of your insurance company may help. One of my meds was over $20,000 per month but after speaking with the case manager from my insurance company, the insurance did pay for most of it. The drug was crucial with keeping me in remission until my transplant. I believe @gingerw is taking Revlimid and may have some suggestions for you.

Do you have a case worker or liaison representative with your insurance?