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Want to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (414)Comment receiving replies
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?
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@tml I hope you are home, or close to getting home. It will be a relief to sleep in familiar surroundings, won't it? Deep breath, cup of tea, and start your battle on your battlefield!
Here is what I posted 3 days ago, about Revlimid. I have been on it since last August. It is shipped from Texas, and needs a telephonic conversation to happen between them and me each time, to go through a checklist and schedule the delivery every four weeks. We've gotten to know our Fed Ex guy very well!
"As for Revlimid. I am on that, plus dexamethasone. I applied though my cancer center's pharmacy, to Bristol Meyers Patient Assistance Foundation, for a grant to cover my co-pays. They needed tax return and financial information. but I was able to get that grant! My co-pay is $0 thanks to them. Here are a two links that you can research for co-pay relief:
https://copays.org/ Patient Co-pay relief
https://www.panfoundation.org Patient Access Network"
Co-pays can be quite prohibitive, that is definitely true! There are several paths to go through to find help. If your local cancer center does not have a patient advocate to help you out, you may have to do it yourself. But we will answer whatever questions you have and help you out as we are able, don't forget.
Ginger