Arnie’s Rebounding World: Sometimes The Long Term Is A Series Of Short Terms
This was a very big summer in our household for family events.
My parents had their sixtieth wedding anniversary, my oldest nephew got married, and my daughter spent a month working in New York.
I was able to travel to and enjoy all of these events.
I mention this only because a year ago, when I started hearing about these upcoming festivities, I was in the hospital for my bone marrow transplant. It was far from clear that I was going to be around long enough to make it to any of them. It was also impossible to see past the short term.
It hasn’t been any easy road. It seems I spent the year jumping from one problem to the next.
With the help of my doctors, we worked through each episode. So, here I am a year later, still around but certainly not out of the woods, as multiple myeloma patients seldom are.
While I was at the wedding this summer, my cousins and nephews began talking about all of the upcoming events for next year: a bar mitzvah in the spring and another wedding next summer.
I was in the moment, enjoying myself, and dutifully making note of the dates, but in the back of my mind I was thinking: ‘I hope I’m around to be there.’
Even more importantly, there will be two big events next year in my immediate family.
When I was diagnosed 7.5 years ago, my son was in 8th grade and my daughter was in the 4th grade. I remember thinking: ‘I want to make it to my son’s high school graduation.’
Now my son is starting his senior year of college and my daughter her senior year of high school. So, we will have two graduations in May. Of course, in the back of my mind, I’m thinking: ‘I hope to be around then.’
I was recently talking to a close friend of mine who asked how I was doing.
I explained that I am feeling good but still trying to find a regimen that keeps my disease under control. Short term, I think I am okay, but long term is a big unknown.
His reply was: “Sometimes the long term is just a series of short terms.”
I think his comment nailed what has been my multiple myeloma experience and likely the experience of many other multiple myeloma patients.
It has been a long and rocky 7.5 years full of multiple relapses, countless drug regimens, two stem cell transplants using my own stem cells, and most recently a donor (allogeneic) stem cell transplant plus more drugs.
From the time of my diagnosis, I have basically managed to string together a series of short terms, which have added up to a long term. Just not long enough.
Unfortunately, the state of the art of multiple myeloma treatment at the present time, while much improved, is still largely based on a series of short terms.
While response rates are much better with the newer regimens, we are still talking about the dreaded “time to progression,” rather than cure.
Almost all of the results of the new drugs in clinical trials for relapsed/refractory disease sound the same to me: 30 percent response rate and six months time to progression. There really hasn’t been a game changer yet.
So, a series of short terms is pretty much built into the equation. It’s clearly not good enough, but it’s what we have to deal with.
My mantra since I was diagnosed (and I’m sure it’s the mantra of many other multiple myeloma patients), has always been: just stay alive until the next drug comes along.
I have able to reset the clock a little bit with the donor transplant. As I have said before, while I didn’t get the home run result from the transplant, it seems that I have been able to reset things enough to go back and use drugs that were no longer working. This has bought me a little bit more time.
So, for the time being, it is difficult to see past the short term.
My hope is that a series of short terms will take me to graduation next May and beyond.
Who knows, maybe some combination of a new immune system and that next drug in the pipeline will be the game changer.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
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I'm 27 years old and look at it the same way. However my disease seems to be under control with RVD and I've never required a stem cell transplant yet. Kind of a huge series of unknowns being so young
. I just started RVD. A year ago in April ''12 so I will ride this wave as long as I can. I'm at a VGPR and close to a complete remission. Hopefully allo transplants become safer and more reliable in next 10 years that's what I'm hopeing for or a cure. The fear I have is exactly what you posted about. Everything is a series of short term fixes. Dreading for the ball to drop but so far so good at least for me. I would like to have kids and get that settled before thinking about transplants. Well see how that goes but I'm in no rush. Just want to travel the world and enjoy my disease being under control for the time being but I know that the ball will drop sooner or later. Being so young the anxiety is greatly increased due to unknown but I think/hope that they will find a cure within my lifetime. Thanks for the positive column. All the best
Mark
Thanks Arnie for another very insightful column. It does seem difficult to make any really long term plans when one is caught up with cancer treatments, and frequent testing too. I remember just praying that I would be able to attend (and be around for) my daughters' graduations from Nursing and Medicine in 2011. By then I was two years into my 'journey' with myeloma. i had already attended high school grads and grads for a bachelor's degree for them too. But we were there as a family, and have the nice photos to show for it...I still had quite short wavy hair then from all the chemo involved with having the stem cell transplant.
i hope you have many many more nice summers with your family...enjoy autumn too this year!
Arnie - the courage, honesty, and full-steam-ahead attitude that you have exhibited through seven years of a very rough road does nothing less than humble and inspire me. I pray that you are able to be a part of many more cherished milestones in the lives of your family. As always, thank you for sharing your story.
Thanks I really needed to hear this message today
I have been really stressing over long term lately with my mm
But now I see how you dealt with it and know I can too
So here I'd to lots of short term things that keep me around until we find a cure for mm
Arnie
Thanks for another open and honest essay!
It sounds like my children were about the same age as yours when I was diagnosed. Now 4 years later, I'm still chugging along and they are older. Now I look forward to my birthdays and look forward to getting older.
I hope to live long enough to read your next 30 essays!
Thanks Arnie for keeping us updated. Hope you keep writing for many years to come, you are an inspiration.
Arnie,
This really helped me put things in perspective. My husband, the patient, seems to be dealing with this in a much more positive way than I am. I feel like I am always waiting for the other shoe to drop, holding my breath until those labs come back.
Diagnosed in January, he responded quite well to VD, but progressed just as we were headed into maintenance. So, we have started Kyprolis and I will try very hard to see this as just a bump in the, hopefully, very long road.
Many thanks for your positive spin on setbacks and I wish you many more celebrations to come!
Susan
Arnie, thanks for this column. I think you describe perfetly what goes through the mind of myeloma patient. At 28 months since diagnosis, your writing is very helful.
Matt
Hi Arnie, it is great that you were able to attend the family gatherings that you wrote about earlier. I hope there will be many more that you will attend including the ones in May. To me myeloma seems like playing leap frog - just when you think you are in the clear another obstacle appears that you have to jump over. So lots of little short term goals to reach the long term goal. After years of thinking I just want to make sure I am here for my children in their teenage years (currently they are 10 and 14) last week I could actually picture myself as a grandmother!!!!
Take care,
Libby
You have no idea how much your column (and not just this one, but all the previous articles as well!) speaks to my heart. I was just reflecting today on how my 4th anniversary of my mm diagnosis is coming up this December and I am amazed at all the treatment I have had: RVD, VDT-PACE (twice), an auto sct, and two allos! Yet I have had wonderful quality of life and feel (oddly) that I haven't missed much in the lives of my four children. You have set my spirit at peace by reminding me that this is just the way of things--short-term planning--and to go with it. I refer to each treatment as going from "strength to strength." Many blessings to you and your family! Dana
Arnie,
Was it a difficult decision to go with an allogeneic transplant? What did you base your decision to do it on? I am facing the possibility of an allo since my auto only kept me in remission for 5 months (I'm one of those t(4:14) intermediate or high risk depending on which stager system you are using but I was considered Stage one. Are you getting the subsequent donor fluids as well. Where has it put you in terms of remission? And the best question is: Would you do it again if needed?
My doctor says that if everything is right with a good donor, low residual disease that I might have a 30% chance of cure or at least a long stability.Of course we all know that the trick is to stay alive long enough for the researchers to come up with a cure.
Hello Arnie, thank you for another well thought out column, and the good news of enjoying your important family events. Your courage and perseverance through a series of so many obstacles has indeed turned all the short terms to long term survival for you. I know your own research and a series of wise choices among expert opinions has been instrumental in your survival, and your enjoyment of life. May it continue to do so for many years to come! Even achieving a long term CR is a definite possibility down the road.
Your story and progress has been a real inspiration for me, as it has for so many Beacon readers. Like you, I am now blazing ahead into uncharted waters, where there is little precedent. We make our therapeutic choices based on the best advice of experts in the field, and our own research. After 26 months since diagnosis, I have become refractory to all FDA approved medications for MM, my last being IV Kyprolis with oral Cytoxan and dex now. But I am excited about my options of BRAF and MEK inhibitors, and immunotherapy with monoclonal antibodies. Trials are one option, but given some unusual features of my MM challenge, they may not be applicable, nor give me the flexibility of combination treatment that I may need.
Yet I enjoy life more than ever, including my son's wedding last week. I would like to live to see my twin daughters weddings (one is engaged now), and future grandchildren. But that is beyond my control. For me the lesson is to stay focused on the present, commune with my beautiful supportive wife, and be grateful for all the blessings that have come my way. Ultimately it is an exercise of surrender, letting go of fear, and living fully while inspiring my loved ones, friends, and patients. Not my will but Thy will is my prayer. And I am ready for whatever comes.
Thank you again for your inspiration, which has led me to share more middle of the night musing. May we all have many short terms to make for a great long term! Jan
Thanks everyone for your comments. This seems to have struck a chord because it is truly how many multiple myeloma patients live our lives. Jan your thoughts mirror my own. I agree at some point it becomes an exercise in surrender. I do not fear death. I have to admit though that I am not wild about the possibility of a slow painful decline. I would like to keep up on where your treatment regime leads and how you do, I might need it too, and wish you the best. Sherry, in regard to your allo question there is no simple answer, but I will try to be brief. For me when I did the allo I felt I had no other choice. I had become refractory to all myeloma drugs except high dose chemo. It was the best of all bad options as they say. I have not gotten a remission post allo and in fact have recurred with extramellulary disease. I am back on a combo of novel drugs and I am receiving donor lymphocyte infusions. Having said all that, would I do it again? In a heart beat! As I said in my column it has given me time and fairly good quality of life for 13 months and counting.
Members of the Nature Coast Myeloma Support Group up in Brooksville/Springhill/Weeki Wachee all send you our best! It was so kind of you to travel north an hour to speak to our group this spring. I think you're doing GREAT! You've inspired me to consider undergoing an allo if need be and the time comes. Appreciate your column, too. See you again at a meeting next year!
Arnie:
Great to hear you are in a good place. Will never forget the sailboat joint ownership in Annapolis. Easiest joint relationship ever. Are you still sailing?
Be well,
Michael
I find it hard to find words. Multiple myeloma has certainly turned the lives of my family around. My husband at age 42 was diagnosed with stage IIIA in late August 2011, after 9 months of treatment he was in very good remission and he had started the treatments to harvest his stem cells. Ten months after diagnosis he had the stem cell capture and then transplant. Had awesome results and was out of the transplant unit in six days. After almost a year of ups and downs, scares etc we thought all was well. I can honestly say the first six months post transplant were not easy; pains, fatigue sickness, arthritis developing in his spin etc. and then alas life started to come back to normal - in April this year he started running again and by May up to 15 km per week. In mid June his spine started bother him again, we thought it was the arthritis again. Went on vacation late June early July and while away dark bruises appeared out of nowhere and multiplied each day as well the pain in his back increased ten fold. When we got home he got his blood tests done and 5 days later we find out his myeloma was back and IGA levels higher than first diagnosis - his doctors feared the worse, marrow fully involved, aggressive etc - gave him +/- year. Tried to qualify for a clinical trial but platelets and hemoglobin did not cooperate. He had 9 platelet transfusions and 3 blood transfusions before deciding to go back on Rev/Dex conventuals treatment. After only one month this combo knocked down the IGA by almost 70% - great news! We find out Oct 3 how well the 2nd month of this treatment is doing. The continual unknown of how long this can go on is terrifying -- what are the next steps, how many times can a patient be in remission, what is ahead of us with this awful cancer. I keep trying to find the answers on line but there are no definitives out there. We are both so confused! Why didn't the stem cell keep him in remission for +/- 5 years, why can't doctors give you better life expectancy; July +/- 1 year, August results after 1 month chemo - ok now we are thinking maybe 2 or more years. Why is the prognosis still such a mystery? Why all the secrecy? Why not some straight answers? I want the best for my husband and my girls and wish we could get better answers at times. I.E. How many remissions are the average. Why didn't the stem transplant results last longer than 10 - 11 months? Why?
@Sandra. I too was diagnosed in June 2011 & did the Autologous SCT in dec 2011. In dec 2012 I was told my blood work was "off" but too soon to tell. But I got the horrible news in April 2013 that the MM was back. I knew it was back in Jan 2013. So I am on Revlimid & Decadron which have been extremely harsh but I'm told I am doing good. I too would like to know why it came back in less than a year? I get no answers too. I wish you & your husband all the best.
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