Want to talk about Multiple Myeloma: Anyone else?

Will see the doctor tomorrow. Worried as my myeloma numbers are through the roof in just 2 months.

You have my deepest empathy. This has to be incredibly frustrating for you because you’d been in remission. I don’t know the reason your previous clinic said you weren’t a candidate for a bone marrow transplant, but it’s good you’ve gotten this 2nd opinion from Mayo in time to start a new aggressive plan of attack. None of the treatments are easy to get our blood cancers under control so I’m sorry you’re having to face this yet again.

I read through some of your past replies and see that you had some genetic mutations which caused the relapse to occur much sooner. These can happen randomly, you weren’t born with them. Some mutations caused my AML to be more complicated as well. These mutations basically trick our immune systems into no longer recognizing the cancer cells so they go crazy and proliferate out of control. The most defensive way to treat that is with a bone marrow transplant. The renewed immune system has a better chance to attack the cancer causing cells.
I don’t know your age, but at the time of my analogous (unrelated donor) transplant I was 65 years old. I’m now almost 3 years post transplant, fully in remission and back to 100% normal. So I truly hope you follow through with this and stick with the Mayo Clinic for your treatment. It does no good to dwell in the past. What’s done is done and now it’s time to only focus forward!

So, when you discuss this with your team at Mayo, they may still be able to send you back home for treatment of the MM with your current hematologist/oncologist for convenience. The local provider back home will also need to be part of your post transplant team when you need follow up routine blood work. Here’s what happened in my case. My cancer treatment center back home knew I’d need a BMT post AML treatment. I chose Mayo and arrangements were made. When I became a transplant candidate at Mayo Clinic, they then were the directing doctors for my treatment back home. Orders from Mayo were sent to my clinic back home to facilitate the further treatment I needed to get me ready for transplant. They worked together. Basically, Mayo became the ‘general contractor’ and my home clinic followed their direction for treatment until I was physically transferred back to Rochester for the transplant procedure. So whether or not your current clinic feels you’re a candidate or not, it’s not their concern. You can still receive treatment there for your MM and then return to Rochester for Mayo for your transplant.
Does this sound feasible to you?

This is one of those questions without an answer. So please, try not to dwell on ‘could haves’. That will drain you and leave you frustrated and depressed. It’s time to move forward and take charge.

You’ll be getting a new plan of action and a new infusion of hope tomorrow when you have your next appointment. Do you like your new doctor?

@tml As you said before, there are extenuating circumstances at play here. Having a genetic mutation that has caused your system to act differently than others they might have seen, your local medical team may not have had the background to fully work with you. I am proud you got to Mayo Clinic, and as @loribmt said, let Mayo take over leading the way.

One other thing to remember, is that while your numbers are now so dramatically different than before, there is a new set of lab machines and centers handling your samples to be tested. They can also make a pretty big difference. I know I have seen that in my lab results. Those from the "commercial" lab versus those from my cancer center's lab can vary in some critical results.

We are here in your corner, cheering you on and supporting you. Take those deep breaths, relax as much as you can. You got this!
Ginger

Hope so. My home ‘clinic’ is a huge health system that does thousands of them including T cell. I really do not trust them anymore but likely stuck there. Guess I will know tomorrow what options I have. They totally ignored my symptoms and did tests for 2 months and then put me back in my same old treatments. Other than the myeloma all my other tests for liver, kidney, etc are fine. Was doing 20 mile bike trips and now I can hardly walk without a horrible pulse rate, out of breath. Part may be stress but not all and dread the flight back. I wish I could be more positive. Maybe tomorrow if a good plan.

I appreciate that!!! Actually they use Mayo tests and they are sent to Mayo for processing. They claim to have an affiliation with them but when called Mayo found that was not so. A very tenuous one, I guess. So The chain numbers and ratiod are comparable. I know I need to move forward and glad I finally came to Mayo. I had thought about it since diagnosed but never made the call. It is my nature to be obsessive which is working against me. Very hard to control even with anxiety meds! Wish I was where you are! It just seems too many months away!

Not yet, guess tomorrow. Hope so.

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!

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?

No. It has to be mailed likely from Florida. I am changing doctors in the network and going to their central center rather than hospital satellite run by them. Feel very poor care there these last 5 months. My fault in not doing this sooner. It too the rib to start that and despite meds getting worse. Trying to stay positive but hard. Hope I sleep tonight as trip back has two stops not one! And TSA.