Arnie’s Rebounding World: The One Thing I Won’t Do
Having recently been discharged from the hospital after my third cycle of high-dose chemo, I was at the outpatient clinic at the hospital recently on a Saturday for lab work and a checkup.
The medical tech who was drawing my blood was a woman I have come to know. She has seen me walking in, dragging myself in, and being wheeled in through years of treatment. She has seen me through two stem cell transplants, a donor transplant, multiple rounds of chemo, and countless rounds of myeloma treatments.
While accessing my port, she shook her head and remarked, “You don’t give up do you. Is there anything you won’t do?” She paused and thought for a second and said, “I know what you won’t do: nothing!”
My wife and I laughed, but her statement hit me dead on. I hadn’t really thought about it that way, but she was right.
Up to this point, that has been my default position. When it comes to trying to manage my multiple myeloma, the one thing I have refused to do is nothing. There are times when this has meant pushing against advice and conventional wisdom.
On one occasion a couple of years ago, I was in a really bad spot with my disease. Nothing seemed to be working, and we were advised that I would not survive further high-dose chemotherapy. I thought, “We have to at least try. What are we going to do, nothing?” Fortunately, the chemo was successful beyond our hopes.
When told a donor (allogeneic) stem cell transplant was probably not going to be helpful, we kept pushing for it. I had to at least try. I am now 20 months post donor transplant.
Unfortunately, I have relapsed after the donor transplant and have had to continue to try to find some way to keep my disease under control. Doing nothing still just doesn’t seem like an option. After progressing on a regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide, Imnovid), cyclophosphamide (Cytoxan), and dexamethasone (Decadron), I have just finished three cycles of Velcade (bortezomib), thalidomide (Thalomid), and dexamethasone plus cisplatin, doxorubicin (Adriamycin), cyclophosphamide, and etoposide (known as VTD-PACE), which thankfully has been very effective in reducing my disease.
In a recent column, I had written about the compassionate use program and our effort to get access to the monoclonal antibody elotuzumab through that program. We were initially denied when Bristol-Myers Squibb, the company that develops elotuzumab, closed their compassionate use program for the drug.
The really good news is that through some tremendous efforts by one of my doctors, Bristol-Myers Squibb has reconsidered their decision and has reopened their compassionate use program for elotuzumab and I am now approved. So that is my next step.
I have always tried to seek other opinions, think ahead, research, and have a plan. Everything in medicine comes down to an assessment of risks versus potential benefits. However, as time goes on, I am willing to accept more risk and side effects in dealing with disease. It’s not a matter of courage or heroics. In my mind, there is just no other way to approach this. I don’t want to go down without trying everything I can. I don’t want to feel I’ve left any cards on the table.
Up to this point, I have been very lucky that I have responded when things seem to be at their worst, and I have been able to bounce back. I know that at some point that might not work out.
That brings me to the flip side to all of this, and that’s the one that really worries me. There may very well come a time when doing nothing is the right thing to do, when further treatment really is futile, or the risks so far outweigh the potential benefits, that it’s just not worth it.
As a practicing physician, I saw too many times what seemed like needless suffering in the name of heroic efforts to stay alive. I remember, long before I ever got sick, shaking my head and thinking I hope that’s not me. But will I have the wisdom and courage to recognize that time when it comes? It seems like that’s the really hard part.
I don’t feel like I’m anywhere near there yet. For now, I will continue to do anything and everything I can. When the time comes to do nothing, will it be a natural progression and obvious, or will the instinct to not do “nothing” cloud my judgment?
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
In the Spirit of "Animal House", I dub thee ..."Salmon".
Why "Salmon"?
"'Cuz you are always swimming upstream against impossible odds / circumstances to get to the sacred ground of your youth."
Keep swimming, Arnie!
Congrats on the good news.
Regards.
Good news Arnie. And thanks for sharing.
Thanks as always for sharing your brave journey, Dr. Goodman. I hope that the elotuzumab works better for you than the other treatments have. I think it's good that you can receive the drug on a compassionate uses basis, rather than as a clinical trial, actually. Hopefully that would give you more flexibility with dosages and other criteria that seem to be associated with clinical trials. Best wishes to you!
Wow Arnie ... What an article. It has really inspired me. I am just finishing up my induction and just now today heard that my ASCT has finally been pre-approved. You have encouraged me to fight this disease like I had planned from the very beginning when diagnosed in December 2013. My gut feeling and basically my nature is to fight any disease to the very end with all my arsenal of options.
As a pharmacist, I am truly impressed with the vast array of drugs and regimens that you have tried -- some with much success, some with less success, many with horrible side effects, but try them you have.. Many of us would not have the courage or mental fortitude to stay the course through the whole journey. Just with my limited experience with this disease over the last 5 months so far, I have shared with my family that I can see where long-term survivors had to be hardnosed fighters and never ever give up. It just wears you down mentally after a while.
So I tip my hat to you for that stubborn dedication to whip this disease. I feel, like you, that I too will do the very same thing. It's built into my DNA to do so. I can't see myself ever "giving up", even with my strong faith I believe God gave His gift of medical knowledge and wisdom to you doctors to use to help the human race. Being a believer just helps me reinforce that, even though I have a strong reliance on science and facts in my training.
I saw my dad die over 28 days with pancreatic cancer even though the doctors couldn't see it for sure due to blurred images on scans. When they finally told him there was nothing else that they could do. He closed his eyes for a few minutes, then started barking orders to us all about what he wanted us to do around the farm, his house, and sharing with us how he wanted us to live our lives. Conversations that he probably should have had years before, but he was still fighting it to the very end and felt he could whip it. At least we did have the time to share.
At one's end, I think we then focus on how our last times can be used to help others. Either with advice, using our lives through clinical trials for advancing medical knowledge for cures or better outcomes, sharing things that could help others dealing with the same fears, worries, challenges, side effects, etc.
But giving up. I don't think you will Arnie. You haven't yet! Doing nothing ... no, not that either. Helping others ... yes. Even after running out of options, that would be you! Godspeed!
Thanks guys. Nancy, I agree with you, that is the hope. R, I am also reminded of another famous line from Animal House, "Over? Did you say over? Nothing is over till we decide it is."
Dear Arnie, thanks for sharing your inspiring journey. I hope that elotuzumab will be effective and I hope you will start this treatment soon. Take care.
Yaron
F**king A! Way to go Dr. Ken Anderson!
Go get em Arnie!!
The little engine that could, that's you Dr. Goodman. Your perseverance is to be admired. A "never say never" attitude is the greatest mantra where myeloma is concerned. Congratulations on the good news and the next phase of kicking myeloma to the curb. We will be cheering you on and waiting for the next chapter.
Vickie, wife of Frank with mm
It is fantastic news, hopefully it will keep the disease under control until the next best drug is developed. And they will develop new drugs or ways to combat this disease, that is what we humans do - find solutions to problems.
"But will I have the wisdom and courage to recognize that time when it comes? It seems like that’s the really hard part."
Most of the Beacon readers only know you through your wonderful columns. We see strength, wisdom & courage. So of course you will know the "time" when it comes; if you have the strength to question "is it now?", you have the wisdom to realise it is not & the courage to keep on going.
All the best,
Libby
Thanks for an inspiring column, Arnie. I'm very glad to hear that you'll be getting access to elotuzumab, and I can only say "ditto" to what many others have said in terms of hoping that it works well for you.
You are truly amazing. May you get your threescore and ten. And when the time comes for you to do no more, your body will know. Thank you for such a thoughtful, inspiring column.
Arnie,
I am so glad that the pharmaceutical company opened the compassionate use program back up! Everyone tells me that I am so brave! I'm not brave, I just don't give up. I don't know any other way. I was able to quit metadrine amphetamines years ago, cold turkey! If I can do that, I can do this thing called multiple myeloma!
Right now, I am in remission. But it is not without drama. I get a cold, bronchitis, pneumonia at the drop of a pin! My sinuses have given me another upper tract infection, but have to go without antibiotics due to the fear of developing immunity to antibiotics. I had ended up with chemo toxic problems with the Revlimid. So I'm off of all chemo and Zometa for the time being to allow my system to heal. I had lost 35 pounds in 4 to 5 months, and had very bad anemia, that was requiring transfusions! And I am just starting this battle. I only hope I am as graceful as you have been!
I even spoke to a lady who had compression fractured her back, just like I did. I tried not to scare her, but explained that she needed to get tested for MM. She had the same events as I had. This is my way of dealing with MM - share and educate! All of this I gleaned from you and others on the Beacon.
I will keep you in my prayers and positive thoughts. Please keep us informed how the new drug treatment goes!
God Bless!
Arnie, .. but why did the Germans bomb Pearl Harbor?
I'm glad you're doing better and thanks for sharing your experiences with us. Press on!
Your journey is inspiring. Thanks for sharing both sides of the story.
Brenda, Multiple Myeloma Survivor
Dr. Goodman, words cannot express how clear and beautiful and inspiring and thought-provoking ALL of your columns have been for me and "my" survivor, Bob Cain. We admire and respect you, and the team of fellow doctors on this journey with you, immensely. I can only hope -- no I will insist -- that our team step up to the plate for Bob like they did for you when the time comes. Choices are difficult but please press on ... for all of us. And, thank you.
Right now MM definitely puts one on a glide path trying to understand what our end of life decisions ought to be. Of course, that's no different than the billions of people that have preceded us. Millions of them never gave much thought to how they wanted to see their life end, but we have been given that chance because we don't know when we're going to get hit by the bus, but we know that friggin' bus is coming ...
Like you, I fight on. If a cure comes along, thanks to the work of people like Ken Anderson and so many others, then that just will be the greatest thing for us and for those that are following. But that just might not happen, so that means there's a lot to consider. Do we keep pounding our bodies with treatment after treatment until we're so brittle we can't go on and keep hoping for a 'miracle?' Or, do we try and understand, as you've said, when enough is enough.
As I go through my journey that's something I am trying to figure out and, as I consider it, I know that I'm making progress and, I think, making better treatment decisions too.
For young patients with young kids, I feel like there isn't much of a choice. You press on until press you can no more. I have a 5 year old. One, it is a matter of setting an example that can shape my son into a man who does not quit or take no for an answer. Two, I'd do virtually anything if it increases my chances of seeing my kid grow up to be a man.
Regrettably, all mathematical odds are against me. That hardly stops me from being optimistic. I suppose I am stubborn as a mule ... or as a cancer. We'll see in the end who's more stubborn.
Best to you Arnie. Your story is a story that I will likely live through, as will many of the readers on this forum. Keep us posted on the elotuzumab. Antibodies plus immunovaccines are likely what we, the younger ones, will be hanging our hats on one day.
I agree you inspire us! Soon my husband will be in the 22nd cycle of elotuzumab, Velcade, and dex. He is doing great in the clinical trial and I believe the only side effects are from the Velcade and the dex and you know how that is.
He was diagnosed in 2001 with MGUS, myeloma in 2010, and previously had one round of treatment with Velcade / dex. He is 75 yrs old.
Good luck to you and why not keep trying?!
You will know when it is time to stop treatment. Hopefully that day is far in the future.
Thanks for the thought-provoking column, Arnie. And best of luck with the elotuzumab!
I can't thank everyone enough for your thoughts and well wishes. Ivan, I agree with you, I too have to some extent tried to set an example to my children about handling adversity. But, to be clear, at this point I hold no illusions about "whipping" myeloma. I am hoping for something more along the lines of battling to a standstill. I also really like Michael's analogy about myeloma putting us on the slow glide path.
Hello Arnie, thank you for another great column. You are indeed a fighter, always planning the next step or two. I am also trying to surf the wave ahead of the disease, but I prefer engaging the disease as a great teacher. There will be a time for all of us to accept the reality of imminent death, and hold off on further active treatment. Palliative care and possibly hospice, music thanatology, and home care may be valuable options, all of which attract me. I do not see death as a failure, but rather as a transformation to another reality.
In my case, I am blessed to have a very supportive wife, and three wonderful children who are all independent, successful, and truly enjoying life. They all know I love them unconditionally, and that they do not need to worry about me when it is time for the Greatest Adventure at the end of our life on Earth. Our affairs are in order as much as I have been able to arrange. I feel there is nothing I have to accomplish or attain anymore, and have practiced forgiveness on all levels, and asked for it from all I know. No regrets! Surrender to our lack of complete control over our future, letting go of our ego desires, has been so freeing.
So I continue to pursue cutting edge genomic and immunologic therapies, having exhausted most approved myeloma therapies almost three years into my MM journey. Of course I have much to live for, and am grateful to still have an active, productive and very enjoyable life. My hope is that I will continue to do well for a long time. But I believe that I will know when it is time to enter an active dying process, without fear. The support of my loved ones, and my own spiritual beliefs are great sources of comfort. All of us follow the journey most akin to our beliefs. May the final transformation be an occasion for life celebration to all of us!
Jan
I am so relieved to hear you are approved for elotuzumab. It really irritates me when drug companies deny people access when they really need it.
My husband was lucky to get on a clinical trial and has been on elotuzumab for 29 months and his counts dropped fast and are still very low. Only the first round had side effects and they weren't too bad - just read the list and know you may get them all. Second cycle and beyond - nothing. I hope it works as well for you as it does for him. He is also taking Revlimid and dex, which I assume you will too.
I am like you, try all options and when they run out - keep looking for more. I think a person "knows" when it is time to stop. It has to be your decision and no one else's. Keep fighting!!
Such good news you were approved for compassionate care. What a great effort by all. I'm hoping it does it's 'magic' and you get many more years!!!
I have had friends and relatives who have pursued treatment past the point where it was going to do more than extend life by a month or two. The financial cost was enormous.
What concerns me is that people may refuse to give up and may continue to ask for treatment when the prognosis is terrible. This uses up resources of all kinds (drugs, hospital beds, use of equipment, use of doctors' time) which could be given to someone with a better prognosis and better chance of long life. These resources are not infinite; in fact, we are hearing nowadays about a shortage of drugs, which includes chemo drugs.
Should a man in his 50s deprive a child with a longer life ahead of the opportunity to recover? There is that risk, and I think it is something to be considered.
HI Nancy, that is an intriguing comment and I can see that you are sincere in your thoughts, but I feel that people in their 50's are not really 'old' (being myself in my sixties,the 50's now look somewhat younger). Many of the treatments that patients are using for their myeloma are still on an experimental basis, or if they have been approved in a country, are quite new. Perhaps the patients on clinical trials should be applauded for their courage in trying out a new drug. New drugs do not always bring about better health.
I only wish that new and improved drugs become available for MM patients, so that we won't have to take such a long time to achieve durable remissions. I think that in Canada as well as in some other countries there is not enough awareness that modern medicine in all its possibilities is very expensive. Taxpayers are not willing to accept that we will have to pay more if we want better results. That is why I am interested in advocacy for new drugs here.
I also knew people over the years who have not survived myeloma. I am only left to wonder if they had had access to some of the newer treatments right from the start if they could have survived. It leaves a bitter taste in my mouth!
Great news Arnie! I told you to never give up!
To Nancy I would like to say that I do agree that costs can be tremendous. To me the solution seems to be to lower the cost for these drugs and for the pharmaceutical companies to accept a lower profit. You will never know if a drug will prolong your life for just a few months or several years. If you have children the loss of a parent may cause lifelong problems and how do you calculate these costs for the society?
All the best,
Åsa
Congratulations Arnie! I'm happy to read your good news. My husband has been smoldering for about two years now, and we enjoy reading your columns not only for your experience as the patient, but also for your medical expertise as well. Stay strong. We're rooting for you!
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