Arnie’s Rebounding World: Reflecting Back, Looking Forward
Last week marked the six-year anniversary of my diagnosis of multiple myeloma. The occasion was marked, not by a celebration, but by a trip to Boston to talk with Dr. Ken Anderson about the next step in my treatment.
The last six years have been filled with ups and downs.
As I am always reminded, myeloma is a very heterogeneous disease and behaves differently for everyone. Some people seem to have periods of very long responses to treatment and periods where the disease is well controlled. It seems that was never really the case for me.
I was initially treated with vincristine, doxorubicin (Adriamycin), and dexamethasone (Decadron), known as VAD, and a stem cell transplant. I had a good response to the treatment, but I never got a complete response (or remission as some people like to call it). At that time, maintenance therapy with Revlimid (lenalidomide) was not yet in vogue.
I was told “mean time to relapse is 18 months to 2 years.” At 10 months, my M-spike started to creep up, and I began Revlimid and then added dexamethasone a couple of months later.
Since then, it has been continuous medications and treatments. These have run the gamut, including Revlimid, dexamethasone, Velcade (bortezomib), and various combinations. I was in a clinical trial with pomalidomide, and I had a second stem cell transplant last year.
I have had several relapses, which fortunately always seemed to respond to treatment.
Each relapse, however, is a nerve-wracking experience. The thought process is always the same. It seems that this is it, the beginning of the end.
We were always able to come up with a new plan, which made me feel a lot better, and I was able to turn the corner.
I called my column ‘Arnie’s Rebounding World’ because I seemed to respond and rebound after each relapse.
But myeloma is always present. It is the elephant in the room. It is always on my mind and plays a role in almost every decision I make. It is difficult to plan ahead, not knowing what the next treatment will be.
Multiple myeloma takes its toll. A physician once told me that between the disease itself and the treatments, it wears you down. I am certainly not what I was six years ago.
Don’t get me wrong, for the most part during the last six years, the treatments have allowed me to have a pretty good quality of life. Except for some intermittent down periods, I have been able to remain physically active and continue to enjoy many of the things I like to do.
I have had wonderful quality time with my family. When I was first diagnosed, my son was in 8th grade and my daughter was in 4th grade. I remember thinking, “If I can just make it to see my son graduate high school…” He is now finishing his sophomore year in college. My daughter is now a sophomore in high school, and I have to make it to her graduation.
For all these things, I am extremely grateful.
Looking forward, I feel like I am at somewhat of a crossroad in my disease, and the path from here is much less clear. I have exhausted all of the standard treatments available.
I know that with each relapse multiple myeloma becomes less responsive and harder to treat. The pace of my disease seems to have quickened. The relapses are more frequent and more aggressive. None of this is a good sign.
I have once again been able to get my disease under control with a couple of rounds of chemotherapy with dexamethasone, cyclophosphamide (Cytoxan), etoposide, and cisplatin, known as DCEP, but this is a temporary situation. So what is next?
There is no question that there is an abundance of new drugs in the pipeline.
Of course, there are clinical trials, but this is not as simple as it sounds. Most are far away and require significant travel. Inclusion and exclusion criteria are very specific, and I may not qualify. Many trials involve randomization, meaning I might not even get the trial drug.
Despite the hype, it is also not clear to me that these drugs represent advances and breakthroughs significant enough to help me in the long run. It seems the duration of the responses are fairly short, and the problem of acquired drug resistance has not been solved. Despite the hype, it is also not clear that these new drugs will come soon enough. Witness how long it has taken to get carfilzomib (Kyprolis) approved.
Even the experts disagree. While we are trying a somewhat out-of-the-box cocktail of Revlimid, dexamethasone, and Zolinza (vorinostat) as a short-term fix, Dr. Anderson is recommending an allogeneic (donor) bone marrow transplant. My other doctors at Moffitt think this is a bad idea. I’m still trying to figure it out.
I am curious if any readers have any experience with a donor transplant.
So, I am still looking for the answer and still looking forward to making it to my daughter’s high school and my son’s college graduations.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
I'm glad you have had a chance to consult with Dr. Anderson. He is someone I have admired from a far and who I have enjoyed watching in panel discussions with Dr. Barlogie and other international researchers on the subject.
Donor transplants and mini-allos are reasonable alternatives where multiple treatments and relapses have occurred. I don't have personal experience with this, but I know there are some out there who have done them and survived, though the mortality rates are higher, but improving. A Leukemia patient often has no choice in the matter, so putting it in perspective in that regard, along with your treatment goals.... well you know all this Arnie. It's so much easier when we are on the outside looking in vs. being in the middle of it! I know you will do what is right for you and your family. In the meantime, I'm hoping that your new drug regimen does the trick!
Hi Dr. Goodman...thanks for sharing your treatment history with us. I admire your courage and perseverance through all of this, and if anyone can get through to better health, it will be someone like you! One's family can be our greatest source of strength, and just visualizing to future goals, such as graduations, is good therapy I think. That certainly has given me nice goals to focus on when feeling down about having myeloma. My husband and I are wishing you and your family all the very best!
Don't have any first hand knowledge of allogenic transplants, or even most of the treatments you have been on, but I am sure that there are others reading who do know.
Hi Dr. Goodman, I really enjoyed your column today and can really appreciate the similarities of your life with it's treatments and ups and downs. I too used to wonder if I would be able to see my two month grandson finish kindergarten, he is now halfway through 5th grade. Today is pretty well exactly 10 years since my diagnosis!I just had spinal fusion which appears to be successful, but recovery seems to be more difficult due to myeloma. I had an allo transplant with my brother's cells in 2007. It was successful, I guess, but only gave me remission for 2 and a half years. But given the chance, I would say yes to the opportunity again. I had significant gvh, which is why I got two and a half years. Obviously, I don't know how much time is left, but am now enjoying just over 2 years remission with velcade and steroids. I feel the dreaded disease is soon coming back, due probably to the unwell feeling major surgery like spinal fusion gives you. Time will tell. I'm scared but will face it like every time before and take my treatments until they stop working.
I sincerely hope you do well with your next round of therapy. In all my treatments, must say, the allo transplant was no more difficult than everything else I've been given. Of course the gvh is scary, but seems whatever comes up, there's a med to treat it. Good luck and I wish you all the best. Believe that you will see your kids graduate, and you will.
Dr. Goodman,
I have learned a lot from your columns - thank you very much for all of them. We had a discussion in the forum with another relapsed patient that was considering an Allo.
http://www.myelomabeacon.com/forum/needing-information-t901.html
I did mine as part of my upfront therapy. I am 10 months out from mine and I am doing great - no problem with GVHD and the highest level of Remission we can measure. My Quality of Life is outstanding - it feels great to not take any Chemo/Novel Agents/Steroids. It sounds like a lot could depend on if your Donor is Male or Female. A Female Donor to a Male Recipient creates the most Graft vs Myeloma and potentially the most GVHD. I was able to do a partially TCell depleted Allo (they used ATG on me) because I was in my first Complete Response when I did my Allo. You may not have that luxury since you may have to rely heavily on the Graft vs Myeloma effect.
If you have any questions, please feel free to email me. Best of luck. We are all pulling for you.
Mark
Arnie,
I just want to wish you the best. I am also a myeloma pt but I have no particular insight to add on the technical aspects of what you are experiencing. I do understand as a father and grandfather in re. to setting survival goals. On the humorous side of it, I told my wife if I survive ten years I will take dancing lessons again. (Not my favorite thing to do.) I figured it was a good way to hedge my bet.
Again- wishing you the best,
Tom
Hi Arnie,
I really enjoyed (if that is the right word), your writing. Your timelines are similiar to mine, and i have felt much like you. I am on a clinical trial now for pom, which does not seem to be working, and my options are becoming few and far between. Being generally an upbeat person, as i think you are two, i find the situation doubly hard and i am seeking and praying for something to be upbeat about. I think sometimes of those who get cancer and are gone in a year, how much we have to be grateful for that we have had more time with our loved ones.
Life, and humans, are funny, the more we have the more we want i think. I hate not having a roadmap to follow for treatment, not having certain steps that i know we will take next, and i am tired, my body is tired and so am i. I think it is ok to give in to that and let it be so for a bit. Just remember to haul yourself out of that corner before too much time goes by and find something to rejuvenate emotionally, a spot like the forest, or by a river, wherever you can let some peace come to you.
In Sync and wishing you some answers.
Kathy
Thank you as always for sharing your experiences with us.
Unfortunately I do not have experience of an allo but am thinking if you and your family whilst I am sitting in Moffitt having my tandem transplant. I had round 1 on 12th Dec and am having round 2 as we speak.
I did not have much luck with induction therapy, tried RVD, VCD, VDT and VDT PACE without significance change to my m spike. So my Onc at Moffitt believed a tandem would help to achieve CR, so we shall see.
My Onc at Moffitt originally suggested an allo based on my youngish age and resistance to induction but felt it was not for me at time. But who knows what tomorrow brings...
I am sitting here looking at photos of my lovely family who I will not see for 2 weeks but with some confidence that things will get better and improve. There are so many wonderful stories of hope out there.
Dr Goodman,
Thanks so much for sharing your myeloma experiences with the rest of us. Your perspective as doctor and patient is unique and helpful for all of us, I'm sure.
Is Dr Anderson suggesting a full allogeneic transplant rather than a mini-allogeneic stem cell transplant? I had the mini as part of my upfront therapy and had understood that they didn't any longer do the full donor transpants with myeloma patients. I was blessed to have a brother who was a good match for me and have been in remission since the transplant in December of 2008. I am not on maintenance therapy though though I sometimes wonder whether I should be. I have not had significant GVHD.
I did exchange letters with someone a few years ago who had a full allogeneic transplant for myeloma 25 years ago and has done well ever since. She sent me a picture of her riding her new motorcycle.
Whatever you decide, I know we'll all be hoping and praying that
you are able to continue the "rebound" and be there cheering at those graduations.
Best,
Karen
Dear Arnie, I join others in thanking you for your honest posts, and wishing you the best of success in whatever further treatment you decide on. Unfortunately there are no easy answers or standard therapies for recurrent disease like yours, as you well know. However, you also know where to get several expert opinions, and can decide on which one feels right intuitively for you. Then it is a question of believing in that therapy wholeheartedly, which can make a difference.
I truly hope that soon a breakthrough therapy (likely to be immunotherapy) will be introduced that will be curative for most of us with MM. Thank you for sharing your wisdom as a doctor and a patient with me before my ASCT recently. It was most appreciated. Hang in there! You have much to offer your family, friends, and other MM patients. So keep on posting! Sincerely, Jan
Thanks everyone for your thoughts and comments. Great to hear from people like Cathy and Mark who have had successful allo transplants. It is indeed frustrating that at his point there is no road map or stand of care to follow. Everything is pretty much by feel. The "art" of medicine. There does seem to be an important distinction between allo transplant as up front treatment or after first relapse as opposed to the salvage setting. with the results being better in the former. I am getting different opinions on the myeloablative vs non myeloablative allo. At Dana Farber they seem to be recommending a full myeloablative for better disease control, but more risk.
Hello Arnie,
Man, it is a challenge isn't it? I was diagnosed 7 years ago and am just now starting to have my IGA go the wrong way. It has been going down continually since I was diagnosed. I am beginning Velcade which is the ONLY chemo of any sort I have taken. No transplant and an amazing quality of life.
Go on line and google IAT clinic - which has been treating cancer for 35 years now - look under testimonials and mine is the first of many. They have many testimonials on there and have a fantastic record with multiple myeloma. One guy, Pat, has lived with mm for 19 years just doing their treatment no chemo of any sort. It is relatively reasonable and they saved my life. At this point your poor body has had enough chemo I suspect.
I work at Ronald McDonald House in New York and know many kids who have had allogenic transplants and from what I have seen the gvh disease is deadly... and a third transplant? Perhaps your body is telling you to try something else.
What could it hurt? Go on line and take 5 minutes and watch some of the testimonials. Call the clinic, they will give you phone numbers of patients who have lived on their treatment for 10 - 20 and 30 years. They will not try to sell you. I go back for "tune ups" every six months and have met hundreds of patients who are living with their cancer in check (no it is not a cure) and have an amazing quality of life.
Either way, good luck to you and I hope you find something to help you whatever it is.
Best,
Christine
PS I give my phone number on the testimonial if you want to ask me more about it.
Dear Arnie,
I too have had an Allo successfully administered to me at Froedtert, in Milwaukee. I received my sisters cells 4 months after my own auto. 6 weeks later I was checked, and had 90% Chimera change. I had very little GVHD, and was induced back to a 10mg Rev maintenance therapy. I had RVD before the 1st transplant to tamp down the Myeloma and that worked very well. However after the Chimeric change it took me a while to tolerate the Rev again.
Overall I have taken to the Allo exceedingly well, and could honestly say it has saved my life. When I was diagnosed(at 46), I had 2 boys,(12 and 9), and went through the same rationalizing as everyone else on here. I just hoped to get them off to college. Now, 3 years down the road, I have maintained a CR for 28 months, and my goals have naturally been lengthened.
I am very happy to have had good fortune in my response and to have siblings who were a match.
Best of luck to you in your journey.
Mark
Wow. IAT clinic...hmmmm...the best part is it is in the Bahamas...sounds like a great vacation to Freeport.
O the sun, sea, and sand alone, should be rejuvenating.
Dear Dr. Goodman,
Thank you for sharing your life with myeloma. When I was diagnosed in 2003 I wanted to be as aggressive as possible in treating my myeloma. A national study was underway comparing 2 up front autos to an auto followed immediately by a mini-allo. Fortunately, one of my sisters was an ideal match and I did the auto, mini-allo regimen in 2004. GVHD has been more of an irritant to my life style but I was in CR for almost 5 years. I relapsed in 2010 and had a donor lymphocyte infusion (DLI). That worked well for 2 years, but had the accompanying GVHD. I am now starting Rev/Dex, but I can have additional DLIs. I'm glad I had a donor transplant because it has given me more treatment options in this continual fight against myeloma. I've be blessed to see 2 kids finish high school and college and a 3rd graduates in June. I wish you all the best and may all your treatments be successful.'
Hi Dr Goodman
I was diagnosed in April 2009 at 39 and have had CDT, auto SCT, Velcade/Doxil and Rev (which caused kidney problems). After all my M-spike went down to nothing but apparently the plasma content on BMB was still high. I started DT-PACE in December and from the BMB taken in January the result was no sign of myeloma cells from 90% plasma in November. The next step is an allo - this was a possibility after the Revlimid and we were thinking about it but now I'm not going to hesitate if a donor can be found. I think I just want to know that I've tried everything I can to kick myeloma's backside.
Best wishes with whatever you decide to do.
Paula
Dear Dr Goodman
I have missed your monthly article. Hoping all is ok.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page