Pat's Place: We Need To Be Respectful Of Our Fellow Myeloma Patients' Therapy Choices
Over the years, I have heard a large number of patients—and especially caregivers—aggressively defend their anti-myeloma therapy and treatment center choices.
At first I was confused by this. I didn't understand why others could become so upset and defensive over different therapy choices.
But the truth is: nearly every multiple myeloma patient and caregiver today has been placed in a horribly unfair and difficult position.
I'm not talking about our cancer—of course that isn’t fair! But I'm talking about the divergent therapy choices we are all expected to make.
Do I treat my multiple myeloma “aggressively” by using several novel therapy agents together? Or do I “watch and wait” to see what happens next? Do I get a stem cell transplant if and when initial induction therapy helps knock the myeloma back? Or do I stick with the therapy I'm using until it stops working and worry about getting a transplant later?
My first Mayo Clinic oncologist, Dr. Steven Zeldenrust, framed the question this way: Should I “pull the band aid off slowly” by using novel therapy agents and delaying undergoing a stem cell transplant, or should I “rip the band aid off” and go to transplant right away?
Talk about difficult decisions! But wait, there's more!
Where do I go for treatment? A local cancer center? Or a larger, nationally recognized cancer center? If so, which one do I chose? The Mayo Clinic, Mt. Sinai, Dana Farber, and Moffitt all treat multiple myeloma in a moderate fashion, while the nation's largest multiple myeloma treatment center in Arkansas (UAMS) often recommends a much more aggressive approach.
WHEW! No wonder multiple myeloma patients and caregivers can become emotional and defensive about their therapy choices. Even though we’re unprepared to make these medical decisions, our lives depend on the decisions we make. In order to feel comfortable with our decisions, many patients convince themselves the therapy direction they chose is the best treatment for them—and they don’t want to second guess their decision.
When I was diagnosed, I didn't realize there were so many different choices. I knew Dr. Zeldenrust and other Mayo Clinic myeloma specialists weren't big fans of tandem transplants. But I hadn't yet heard of UAMS' aggressive Total Therapy approach—and Total Therapy was never presented as an option for me.
Now I read about how UAMS claims to be able to cure multiple myeloma in younger, low-risk patients.
WHAT? A cure? No one ever told me about that! But at what cost? Undergoing a pair of stem cell transplants six months apart, sandwiched between taking multiple novel therapy agents for years. Total Therapy had better work!
As it turns out, I would have been a prime candidate for Total Therapy. Who knew? It isn’t likely I would have chosen the Total Therapy approach. But if I had chosen to undergo this very aggressive treatment regimen—I think I might get a bit defensive if anyone challenged my choice—or the effectiveness of the program.
Geography can also play a major role here. So does one's insurance coverage. For me, UAMS was three states away, while Mayo Clinic was a short two hour drive. My insurance considered Mayo Clinic an approved provider. UAMS would have been out of network. This has nothing to do with effectiveness of treatment at the respective institutions. It has everything to do with access, convenience, insurance, and money—but these are all important considerations too.
We are not helping others by touting our own choices or disparaging the therapy choices of others. I think we all need to remember that our therapy choices are uniquely personal.
Multiple myeloma is a complex cancer. What works for one of us may not work for another—either by choice or necessity. We need to be respectful of our fellow patients' choices. After all, we are all in this together!
Feel good and keep smiling! Pat
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You area quite right Pat, there are many issues and factors that go into a person's very personal choice. I have read your writings in a few places about how unfair it all is to have to choose. I get it. I do. This struggle in deciding does seem unfair. We generally don't know all that we could or couldn't do BEFORE we start down a particular road. Having said all of that though, and given that it is an orphan disease on the cusp of what we hope are some breakthroughs, it is the pioneering stamina of the patients, the researchers and those who love them, that has brought us to this place where we do have choices that were simply not even in the discussion just a scant decade ago. Or in a country where there is government healthcare tightly controls what is allowed in treatment, what they are willing to cover.
I suspect with some research on the history of some other diseases, we will see a similar path:
- Few choices, many deaths,
- more choices, still too many deaths, improving,
- better choices, more surviving,
- a couple of choices, many surviving, curable.
It is this path that we are on now, that is the result of competition in the race for the cure. It is this competition that will bring it about and what makes America a leader in this area. We are sadly or happily, caught in the wake of that activity. Those who came long before us would consider us the luckiest Myeloma folks in the world to have what we have right now, so many choices, so many options, so many drugs we can try. Those who come a decade after us will hopefully get a wave of the medical wand belonging to Star Trek's Medical Officer, "Bones", be cured in a couple of movie frames, and think what we all went through was nothing less than barbaric.
The bottom line is, to be informative, share, disclose biases, and fairly present what we know and then step back as the newly diagnosed patients struggles to make their choices. In the end, it has to be their choice. Being respectful is right on the money. Nicely put.
Thanks, Lori! Hard to argue with any of that! Pat
Pat and Lori,
This has touched on such a nerve for me tonight...good and bad nerve that is! I have a few weeks to decide between RVD, ASCT, 3 years low dose Rev OR Same drill but with an extra ASCT thrown in the middle.(Clinical Trial). I have 3 kids under age 6 and am leaning more towards saving another ASCT for down the road if it's needed. I have to say the temptation of a possible cure is still tempting me but I suspect I will never feel comfortable worrying that I used up my big ammo too soon. I have been combing through our fellow MM'ers blogs and listserve but I know this is just a very difficult personal decision. When I read Lori's response to your post I had to take a step back and remember how lucky we are to have so many choices. I have to choose without knowing if either will be a better choice for my long term survival. Thank you so much for this post and for the great reminder! Wish me luck! Samantha
Samantha-
Good luck with your decisions. Not decision--decisions. Dr. Rajkumar, a well known myeloma doc from Mayo Clinic, once told me "There are no wrong multiple myeloma therapy choices." His point: Most of us will end up using most of the drugs available to us at one time or another--the order doesn't matter. At last December's ASH, an oncologist from the audience asked a pannel that was recommending using combo therapies (Velcade/Rev/Dex) about the "using up all the ammo" thing. Their response: It doesn't work that way. Use combo to knock myeloma down--then maintenance--then combo to knock it down again. You end up in the same place. Good and bad news! Don't put too much pressure on yourself, OK? By the way, for the record and for whatever it's worth--which isn't much--I don't believe TT is truly a cure. UAMS is just taking combo therapy to new limits--and with some success. But a cure? Guess we will know next decade. Feeling lucky? Pat
All good stuff.
One thing though, that is most appealing about UAMS, is they collect and store enough stem cells for 6 transplants. There are a few reasons they do this, but it is certainly comforting for us to know, that should something open up down the line requiring more stem cells. We have them.
In the Forum one patient aptly suggested to another who made their decision to do SCT, that now that they made their decision to back off on all the reading of different options for awhile and stick to their chosen path. I think if it goes well you tend to be obviously pleased with your decision. When it doesn't you second guess. It is a fine line we all walk.
In terms of a cure, the definition of a "cure" in cancer continues to change. The only true cure is if you die of something else unrelated. Used to be if you were cancer free for 5 years, you were considered a survivor. Now it is actually 30 years, in truth, for the tumor cancers. With that in mind, then, I think we are looking for longevity AND quality of life. I hope that helps.
Hang in Samantha. Hang in. There are no easy choices, so you have to do the best you can while working to maintain your mental health and wellbeing.
Good luck!
Lori-
I didn't know UAMS tried to collect enough stem cells for up to six transplants. It took 15 days for me to barely get enough for three. I aplaud that approach--very forward thinking.
I also want to thank you for taking the time to help Samantha and answer her questions. This isn't easy, is it? Pat
Hi Sam,Pat and Lori,
This has touched a nerve with me also ,Pats writings always do
I am in England,have finished VCD induction in July ,we don't seem to do maintenance here unless in a trial...
I am a single mum with a nine year old daughter and want to make the best choices i can at the time that are availiable.
My Consultant and a myeloma specialist are happy for me to delay ASCT but all myeloma patient views seem to say early ASCT is so adventageous?
I want to have some "normal" time with my daughter before leaving her for 2 weeks plus and then the recovery time after...
Pat you have had lots of discussions can you point me to any research or info youve got that shows why i should have an early SCT? pls?
Currently my bonemarrow shows no myeloma cells ,my paraprotein is 1 g/l and all other bloods great.
I realise this stableness won't last forever but I'm concerned about the toxicity of ASCT and the longterm affects ?
I hate these decisions......
I only know of two people delaying SCT and theyre on Rev ,surely I can't be the only person likely to delay SCT with no maintenance ,or am i?
Thanks Pat for all your interesting postings
Sue
Sue, if I may, jump in... It would be great to have some docs chime in on this, but I suspect they have differing views as well, but one may resonate for you more.
For us, it seems odd to some that we moved ahead with aggressive tandem SCT when he had decreased his MM dramatically on Thalidomide/Dex. However, the two different docs and facilities, never offered us any alternative, and both wanted to get started soon. He was, however, seriously impacted with lesions and the swiss cheese in his bones from head to hip. He was 48 at dx and I think we just had the view of "treatment" in general, understanding more about tumor cancers than blood cancers, at the time. We just wanted it done. We knew that the prevailing view would be that it would come back and we would have to deal with it anyway and he would probably be further compromised later on. Our doc at Little Rock drew us a graph of how they know its there even if undetectable, based on historical data, and their goal is to treat to drive it further and further down to extend longevity in the long run. Its a tough call to be sure and you will have to sort through it somehow.
I do recommend checking out David Emerson's website to wade through some of the other options people are doing, as there is a group of patients and doctors who are moving away from SCT entirely in the USA. His original site dealt only with MM and now he has revamped it to include other cancers and alternative treatment discussions. Just do a search on "People Beating Cancer".
The information is quite overwhelming and I surely remember how it was for us before, during and after as things continue to change.
It still seems that there are two basic roads to take, manage vs cure. Of those choices there are more choices to make once you decide on the basic thrust you wish to take.
I don't know that I have helped much. Royal Marsden in the UK seems to be the facility most of my MM friends over there are heading to.
Best,
Lori
Hi Lori
I value your input
I have spoken to gareth morgan before will arrange to speak to him soon thx.
I wondered if sct got the sleeping cells that don't show up ,but then i wonder why those with aggressive myeloma relapse sooo very fast after?
I realise they may be resistant to melphalan.
I have visited davids site often ,find new one bit confusing.
I take biaxin for my RA and vitimin d as i requested testing and it was found to be very low.
Who are the drs in USA swaying away from ASCT? Have they written any papers I can read?
i just can't get it through my head that currently i'm stable my immune system hasnt been hammered by melphalan yet ,so has the ability to maintain me a short while maybe?
I have had MGUS since 2001 so have watched my pp slowly rise year on year,i feel sct stops my bodys inate chance of a period of stability and then the ASCT could be more of a treatment at first relapse.
I think im a manage candidate as do not believe is cure ,maybe cure longer till next new drugs?
I'm very pleased that 3 months after treatment my level dropped further ,have been told can take 100 days just like after ASCT,my "unaffected" immuglobulins are also coming up ,so some balance is being restored.
Thanks again for your input Lori its very helpful
best wishes
Sue
Hi Sue,
Dr. James Berenson is one of the biggest proponents of not using stem cell transplants. You can read some of his commentary in our forums:
Tandem Auto vs Auto/Mini-Allo
Auto Allo Tandem Transplants
On his website, he talks about his treatment approach, but never mentions the use of stem cell transplants or why he does not use them.
Hi Sue-
If only I was organized enough to point you in the right direction! Here is what I know. It is a composite of my experiences interviewing myeloma docs, daily research and attending ASH and ASCO presentations:
For now, using one or more novel therapy agents achieves the same results as a successful SCT. But the key phrase is "for now." Because the newest, most effective novel therapies haven't been around very long--and myeloma docs (with the exception of UAMS) haven't been using combo's aggressively during induction or maintenance for more than one or two years. So what we are left with are open ended studies which all show positive results "for now." We won't have real answers for three or four or five more years.
All I know for sure is this: You need to take care of your body--not so much to help stop the cancer--but to enable it to withstand the many years of treatment to follow.
How you chose to do this is up to you. But exercise and great nutrition should be the cornerstone of any long term therapy decision you make.
Glad to help and good luck! Pat
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