A question about finances and cancer

[auburngrad82]

Ten years ago it was discovered that I had smouldering myeloma, a precursor to multiple myeloma. For years it looked like I might dodge the bullet but over the last two years the protein that indicates myeloma has increased significantly and today the oncologist said it's time to start treatement for stage one multiple myeloma.

The treatment involves thalidomide and a steroid, a combination that have been very successful in stopping the advancement of myeloma. The problem is that even with insurance out of pocket expenses can be more than $5000 per year. My wife is not working. I make pretty good money, but how in hell can someone afford to pay that kind of money?

I'm more worried about the money than about the cancer or the treatment. My understanding is that there is no cure for myeloma. I just don't want to wipe out our retirement and leave my wife with nothing. That would suck.

[JanInWloo]

1. Been there, done that

Multiple Myeloma is an expensive disease. It is "treatable" - some people survive 20 years or more - but it is not curable. The drugs which have been developed to manage it are expensive. The retail price of Thalidomide is over $5000/month and the newer drugs are even worse. Revlimid is closer to $8000/mo. So the $5000/yr you may pay through a Medicare part D plan or your group plan doesn't sound too bad. Some people achieve remission through drugs alone, which could take awhile. Others only stay on drugs for a few months and then go the stem cell transplant route. Some oncologists are very aggressive with treatments, throwing everything but the kitchen sink at it all at once. Others believe that an approach that emphasizes quality of life is better - less is more. There's something to be said for each approach. So, I'd suggest getting second opinions, getting advice from an oncologist that specializes in MM and choosing one that uses an approach that you are comfortable with.

There's a group at www.acor.org listserv for myeloma patients and caregivers that you may find useful. Decorum is quite different than at the DemocraticUnderground. But there's lots of folks who have been where you are at. And we all agree that Myeloma sucks.

[auburngrad82]

3. Thanks

Luckily I have insurance, but I'm not sure how much it will cover.

My blood level and the absence of other symptoms (other than mild anemia) put me at stage one, so the drug therapy is the logical option at this point.

I have a skeletal scan scheduled for later this week to make sure the bones are clean, then we can move on to treatment.

Hopefully we'll be able to cover it without blowing through our savings.

[Mr. Helpful]

2. Medicare

If you are over 65 or otherwise eligible for Medicare, I understand they cover treatment for MM.

[auburngrad82]

4. Not quite there yet

I have another 13 years to go before I can qualify for Medicare. Unless the GOP wins, then who knows?

[slipslidingaway]

5. It is unfortunate that the majority of people who file for bankruptcy for medical reasons ...

have insurance, which is why many people wanted a discussion of a national not for profit health care system, but that was not allowed

That being said as a wife to someone with MDS that progressed to acute myeloid leukemia I would rather worry about the finances later and go for the best chance of a long term remission. The only chance my husband had for a cure was a bone marrow transplant and he took that step almost two years ago.

If the combo you mentioned has a high rate of success then I would say go for that, your wife can always earn the 5K with a part time job if need be, I bet she would rather do that and still have you around

[Irishonly]

6. Forgive me but I have a dumb question

I am disabled an am on medicare so I have forgotten a lot about regular insurance. Is there a stop loss on your plan or one of those horrible limits? A stop loss would be wonderful but I don't think most plans have them anymore.

One of my good friends goes to City of Hope. They have helped her as they have helped under insured and non insured for years. She has started radiation for pain. We shouldn't have anyone worry about the cost of treating cancer. The patient and family should be putting all of their efforts into beating the disease.

[auburngrad82]

7. I'm not sure.

We have our annual open enrollment later this month. I'll ask about this. It's not something I ever remember hearing about. Thanks for bringing it up.

[dmr]

8. Doesn't the ACA end the caps on coverage? Or, does that start at a later date?

I'm on Medicare, too, and the ACA helps because it keeps me from falling into that donut hole. It's a big relief, because my cancer meds would certainly put me in that hole.

[Irishonly]

9. I honestly don't know

I hope it does. It is awful to watch your medical costs because of that donut hole.