My husband has been diagnosed with stage 3 Myeloma. Anyone had any experience with it? Due to all his other myriad health issues, a bone marrow transplant is almost impossible;, so we’re hoping that the chemo treatment the doctor wants to put him on (if we can afford it), will help him make the best case scenario of seven to eight years. So, how about Velcade? He’s been on Revlimid in the past (when he had something other than just Medicare) and we have a basic clue how that works, but the other not so much. If anyone can give us any information or suggestions, I sure would appreciate it. Thanks.
I don’t know anything about it, but I just wanted to say I’m so sorry that this has come up in addition to his other health problems. He continues to be in my prayers.
Ask the oncololgist’s office for a referral to a patient financial counselor or medical social worker. The cost of whatever the doctor considers the best option is not supposed to be a barrier to receiving the treatment. Payment and possible financial help can catch up later.
The rack rate is nothing to go by. I have a Medicare Advantage plan, and the supposed costs can be ten times or more the “negotiated plan rate”, with me paying either a flat co-pay (for surgery, for example) or 20% co-insurance (radiation or chemo). Plus, there is an annual out-of-pocket limit.
You might check the Medicare site to see what treatment drugs are covered – the formulary changes frequently, with most cancer chemo covered. My oncologist wants me to have immune therapy with a drug combination that is awaiting FDA approval; Medicare’s approval does not seem to be an issue once that comes through.
I’m a myeloma patient, although I was healthy enough to go through transplant about two years ago and am now in remission. I’m also a physician so I am more up to date on recently developed treatment options than most. I’d be happy to answer any questions you have to the best of my ability.
You mention he was on Revlimid before, is this a recurrence?
I’m sorry for the delay in replying. I tried to respond yesterday, but my phone was refusing to cooperate. Regardless, thank you all for the responses.
I’ll add this to our list of things to check out.
You have no idea how much that’s appreciated. When you’ve reached the point where there’s nothing else to do, I’m glad we have prayer.
I always wonder if smaller places operate differently. When we still lived in a suburb of Dallas and I requested the same thing (at the beginning of my husband’s illness), they looked like I’d grown three heads. Even at the hospital where he worked, I was met with the same bafflement. And now that we live some place infinitely smaller, I can only hope there’s some way to ever find anyone who knows about this. Although I’m not very hopeful. It seems like whenever I need any sort of assistance with stuff outside of the 60s, it’s like I’m in a time warp. But we’ll see.
I’ll also go back to the Medicare site and see what else I can find. I know that the doctor’s office has already said there’s a different price for care at his office versus the hospital. We have a call in about that this morning.
I’m not really sure what all to ask, but the question we had today was is the Velcade and Revlimid equivalent? We initially said he’d take the Revlimid over the other because he’d had it before and it seemed like it would be the most affordable option (if two weren’t necessary, that is). And back then, that was on his work insurance and the co-pay was only $100 a month. Now that portion would be $2,000 a month. But if they’re equal, we could undoubtedly afford the Velcade more easily and sock away some extra money for when it’s necessary to do them both at the same time. If that makes sense.
Also, if he does take Velcade, they say he’ll have to get two shots a week initially. We left the question with the nurse to see how long they estimate that might be. Do you have any idea? Waiting is killing me and it might take a couple of days to hear back.
What’s it like being on chemo? Are there many side effects beyond cramping, vomiting, weakness and the like? I’ve read up on it a bit, but I’d rather hear it from someone who has been there. I’m so glad you got a transplant and are in remission. That’s wonderful.
Finally, yes, he’d been on Revlimid before. The doctor had him stop taking it almost two years ago, back when the only reason he was on it was to help with his blood production (at that point, he was getting a transfusion about every three weeks and it was wreaking havoc with his system). We didn’t even realize it was a chemo drug until now. In those days, I didn’t research everything to the hilt in advance. I just trusted the doctor’s word on whatever it was. Until they gave him something that almost killed him, then I tried to become hyper vigilant about it. Of course, he was off it by then and I never thought to go back and read up on it.
I think that’s all for now. Thank you all for your help.
Since this is a new diagnosis of myeloma the typical initial regimen would be a combination of daily Revlimid with Decadron and Velcade twice a week on three week cycles (two weeks on, one week off).
Side effects for me were very minimal. Some mild GI issues, a bit of neuropathy but that was it.
The goal is to decrease percentage of plasma cells in his marrow as much as possible. I went through four cycles before my transplant, but in patients who are not transplant candidates I believe they will go through 8 cycles.
There is a newer generation drug in the same class as Revlimid called Pomalyst. And there are newer antibody therapies which are in the pipeline but not yet approved.
You should definitely find out if there are any drug studies he may be a candidate for, I get my Revlimid for free.
[QUOTE=Rhiannon8404]
I don’t know anything about it, but I just wanted to say I’m so sorry that this has come up in addition to his other health problems. He continues to be in my prayers.
[/QUOTE]
And mine.
Regards,
Shodan
(me: … patient financial counselor or medical social worker …)
Try for whatever social services agency exists at the county level for your area.
Their page summarizing financial help programs:
http://www.medicare.gov/your-medicare-costs/help-paying-costs/get-help-paying-costs.html
Cancer drugs are generally covered under Medicare Part B rather than Part D.
Talk to your insurance company, too. Maybe check other plans – open enrollment is coming up.
This is common. My oncologist practices at a cancer center within a hospital. If I have a blood draw that he orders done there, I have a co-pay. If I hop off the “L” on the way home and have the blood draw done at my PCP’s office (same medical group) – no co-pay.