Pat’s Place: How Many Ways Are There To Remove A Band-Aid?
Earlier this week, I was talking with three other long-lived multiple myeloma survivors who are all in remission. The fascinating part was that all four of us got there in different ways.
One had undergone a successful allogeneic (donor) stem cell transplant. He hasn’t been on maintenance for years.
The second was just finishing the arduous, four-year Total Therapy treatment regimen at the University of Arkansas for Medical Sciences (UAMS). He plans not to use maintenance therapy.
The third started treatment at Mayo Clinic for kidney failure, but then went on to complete Total Therapy at UAMS. He is also not using maintenance now.
I, too, was initially treated at Mayo Clinic, where I opted to take things slowly – a more incremental approach. I was able to achieve a complete response after ten months on Revlimid (lenalidomide) and dexamethasone (Decadron). So I decided to delay a transplant and stayed on Revlimid maintenance for almost four years. I later underwent an autologous stem cell transplant (using my own stem cells); however, it didn’t control my relapse. But a heavy dose of Revlimid, Velcade (bortezomib), and dexamethasone did the trick! Almost six years out, I’m in remission again and back on maintenance.
Total Therapy is no picnic. Initial treatment with multiple drugs, followed by two stem cell transplants, spaced three or four months apart. Then UAMS docs hit the myeloma hard again during six months or more of consolidation therapy. Finally, patients stay on a three- or four-drug maintenance regimen for up to three years.
And undergoing a donor transplant is no picnic either, especially one done a decade or more ago!
My three fellow myeloma survivors may or may not be cured. But all three have this in common. They endured a lot of up-front risk and discomfort for a possible cure, or at least an extended drug-free holiday.
When I was deciding whether or not to undergo a transplant back in 2007, my myeloma specialist at Mayo, Dr. Zeldenrust, laid-out my decision this way: “Think about it like you are going to pull off a Band-Aid. You can slowly pull the Band-Aid back, or you can rip it off. Either way, it’s going to hurt!”
I had chosen to peel my Band-Aid off slowly. The other three had decided to go ahead and “rip it off.” That’s where our discussion began. The premise: Is undergoing aggressive – often difficult and sometimes dangerous – myeloma therapy upfront worth the discomfort and risk?
My hypothesis going into our discussion was that donor transplants or the UAMS Total Therapy approach might be the way to go for a younger, low-risk patient. And as our discussion died down, I was beginning to think that the answer is YES! All three were doing well – and not using maintenance.
But then I started to put myself in a newly diagnosed patient’s place.
With so many new anti-myeloma drugs in the research pipeline, why not use the incremental approach – possibly even skipping one or more transplants altogether – relying on a host of new drugs to keep them going until a real cure can be found.
It turns out that there doesn’t seem to be a right or wrong answer. And an hour discussion that we thought would help clear things up did nothing but muddy the waters.
But one thing remained clear: With so many treatment options available, it is more important than ever for us to become informed patients and caregivers. We all need to learn as much as we can about myeloma and myeloma therapy. That way we can work closely with our doctors to develop a treatment plan that works best for us.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
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Good article Pat. Glad you're doing better.I have a question about what kind of insurance you or the readers have and how these expensive treatments are handled..I may be going thru this soon as I'm a smoldering patient but the neuropathy seems to be getting worse...Thank You Ralph
Hi Ralph! I am on my wife's Cigna policy at work. $1500 deductible with co-pays after you reach $400 until you reach the $1500 mark. I blow-by $1500 in one month. Then drug co-pays of $100 a month for my Revlimid (oral). LLS co-pay assistance reimburses me most all of that. But they don't cover diagnostics. Can get complicated, so I'm writing a book about how to do it all. Watch for it--hopefully available before the end of the year to allow reader to use tips to plan for 2013.
Great article Pat. I had first transplant oct 2010 now on Revlimed and still in remission.Feeling fine and you are also Good luck.
Thanks Pat for the insight..We need all the info we can get to manage our plight..I have medicare and an advantage program also, but unfortunately great institutions like Mayo don't accept the advantage programs for seniors, that leaves care to general hemo/oncologists that have limited knowledge of MM..Glad your doing well as it seemed touch and go for a while after your transplant..Ralph
Glad you are doing well, Robert!
Ralph, one way around that is to pay for a consult with Mayo - then have that physician consult with your medical oncologist. Shouldn't cost too much if Mayo will let you pay your own way...
Ralph. Another idea. Its the time of year to change Medicare plans. Find one Mayo will accept. Then LLS will pay the higher premium. See post later today on my blog...
Hello Pat, I tried that and there is a strange law that Mayo won't breech..If your on a medicare advantage plan they cannot treat as it is against the law according to Mayo's insurance dept..Now in defense of Mayo they did make a 1 time exception in my case with the blessing of my insurance carrier Humana, that made it legal..I met with your buddy Keith Stewart as I met him at a conference in Hollywood in 2011..He is a sharp cookie and I like to consult with the best..The reason I'm writing about this dilemma is insurance and money is always a factor in medical care..Fortunately with a little research I got myself into a clinical trial at the NCI in Bethesda MD..This helps defray the costs of testing.. Hoping that this exchange between you and I will help others..All the best Ralph..
P.S. what is LLS ????
Hi Pat
Owing to the snafu on this site, a previous question and comment by me was lost. My main point was that drug maintenance also has to be considered as the path to CR. And in that regard, I seem to recall - but wanted to confirm -- that you were on maintenance on revlimid and yet suffered from debilitating neuropathy. Is that right? If so, is that a common long-term side effect of revlimid. Or was it an unfortunate rare occurrence in your case? I know Velcade, of course, is notorious for such side effects.
Hello Dan! Revlimid certainly seems to have contributed to my PN. I believe some was caused by my myeloma, too. But I can't button my shirt without medications to help reduce side effects. I can't write even with the medication. Fortunately I can still use a keyboard! Ironically, Revlimid seems to bother me more than sub-q Velcade. Every case seems to be different--and serious PN doesn't seem to be common with Revlimid. But I know others who have had this experience, too. But I wouldn't fear any of it. You and your doctors can often adjust dosages and meds to help minimize effects.
LLS stands for Leukemia & Lymphoma Society. They are at LLS.org. More specifically, check-out LLS.org/copay.
Hello,
I was wondering if anyone has experienced low platelet and red blood cells? It's been 13 months since the stem cell transplant and I'm still having problems with my counts. I was on revlimid for 3 months tops and I just didn't do well with that drug. My counts kept dropping so, the doctors took me off. So, not chemo maintenace for me. I am in remission, but I'm nervous about relapsing sooner than later.
Judy
Hi Judy! Yes, my platelets are still low 16 months later. Around 100. And Its possible that even 3 months on Revlimid could have slowed your progress down a bit. Were you using dex, too? Dex is what seems to drop my red counts. Revlimid my white counts.
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