Arnie’s Rebounding World: Waiting For The Next Shoe To Drop
A couple of months ago, I wrote a column about how my multiple myeloma treatments over the last couple of years have made any kind of planning ahead almost impossible. For better or for worse, my treatments have forced me to truly live life one day at a time.
There is a corollary to the “one day at a time” mantra. Lately, I have been “waiting for the next shoe to drop.”
I am now 10 months out from my unrelated donor (allogeneic) stem cell transplant, and it has been a roller coaster ride. It seems that as I get one problem solved, a new one pops up.
I have gone from the short-term complications from the transplant, to graft-versus-host disease symptoms, to extramedullary recurrence (outside of the blood and bone marrow) of the multiple myeloma in my sinus requiring radiation therapy, to a positive PET scan requiring further treatment.
This experience has conditioned me to always be waiting for the next shoe to drop. When good news comes, I appreciate it and try to enjoy it. However, I try not to get too excited because I have come to feel as though something else is coming.
I am always on guard for escalation of my disease, signs of graft-versus-host disease, infection, side effects from the drugs, or who knows what else I can’t even anticipate.
As a multiple myeloma patient, I know that I am not alone in this feeling. It is a cloud under which we walk.
Having said all that, I don’t mean to sound down. I’m actually at what I feel is a pretty good spot right now. While I didn’t get the home run result that I would have liked from the transplant, there is no doubt in my mind that the new immune system has had positive effects.
It seems that myeloma drugs that were previously no longer effective for me are now working again. I feel as though I have at least turned the clock back on my disease.
I have returned to exercising and other normal activities. My quality of life is certainly better than it was the six months or so prior to the donor transplant.
I believe that I am alive today and have a fighting chance because of the decision a year ago to proceed with the donor transplant.
Currently, I have had a very good response from 3 cycles of the “CYCLONE” regimen: Kyprolis (carfilzomib), cyclophosphamide (Cytoxan), thalidomide (Thalomid), and dexamethasone (Decadron). The lesions that had shown up on my PET scan have essentially cleared.
I have a small amount of graft-versus-host disease, which manifested as skin and oral changes but which are stable and controlled at present.
All my doctors seem to agree that the best next step for management of my multiple myeloma is a donor lymphocyte infusion (DLI), which is scheduled for this week.
A DLI is basically a way of doubling down on the transplant. More cells are harvested from the original donor and given as a transfusion without any chemotherapy. The idea is to try to ramp up the new immune system even further to stimulate more graft-versus-tumor effect.
The down-side, of course, is that there is a risk of exacerbating more graft-versus-host disease symptoms as well.
It seems like a pretty simple outpatient procedure. Results in the literature are encouraging; however, as with the reported results about transplantation itself, results for DLIs are all over the place and make it difficult to draw any definite conclusions.
So for the time being, I am looking forward to moving forward with the DLI. I know that I will require some type of maintenance regimen afterwards, but the specifics have not been decided yet.
I have resorted to what I think of as my default position in these situations of cautious optimism. I know that my disease will likely become active again at some point, but hopefully I will have drug options again for a while.
Still, I can’t shake the feeling that I am always on the look out for the next shoe to drop.
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 .
My son is 40 years old with Multiple Myeloma and amyloidosis with heart,kidney,nerve and GI tract involvement He is being treated at Moffitt in Tampa FL. I'm really worried he may never get a SCT there because of their inexperience with amyloidosis Unfortunately my son has only Medicare insurance and Mayo won't accept that He is not in heart failure at the present time
He is presently on Velcade, cytoxan and dexamethasone
My daughter was diagnosed with MM at 32 in Jan.2012. She is doing well after 4 rounds of Velcade, stem cell transplant & now some maintenance chemo of Revilmid. They say she is in complete remission. She will have the gamut of tests again in August , a year after transplant. Although she is doing well I can tell she does not want to plan to far ahead because she does not know what will happen. As her mother this is the hardest thing I have ever had to go through in my life. Every day I pray that she will not relapse.
Best to you Arnie, I hope the DLI goes well with no complications. It is true, no matter where we are in our myeloma journey we're always wondering ,what's next, what will it be? I hope it gets better and better for you in the coming months.
Pat Killingsworth likened this disease to the Eagles' "Hotel California". You can check in any time you want but you can never leave. I hear many researchers talking about a cure, but until that dark cloud of caution disappears forever, we will always have to be prepared for the other shoe to drop. Best of luck with your DLI Arnie. May you have continued improvements in your QoL.
I couldn't commit to anything! I would usually respond with, "Thank you so much for including me and not forgetting about us. We will put it on the calendar and do our best to make it. If we aren't there, not that it just wasn't workable." Thank goodness friends and family were so understanding about it all and did indeed keep the invitations coming. Eventually I got to make a few and then both of us. It's much easier now, but it was very much like what you describe for what seemed like the better part of two years. Then when we could plan ahead and commit we were so out of practice, it probably took another year to get back into a habit of saying, "Yeah! Love to!" My postulate for you is that your latest effort will be just the ticket!
Best wishes with the upcoming DLI treatments, Arnie. I hope that they work really well for you. it was nice to hear from your daughter last month also. Hope you are having a nice summer .
Nice update Arnie.
I like the phrase "waiting for the other shoe to drop", but do wonder where it came from-ha.
It seems MM specialists have a love hate relationship with donor transplants.
Hi Arnie, I am glad to hear that you feeling better. Hopefully your DLI gives you the response that you want. All the best,
Libby
Arnie,
A great piece of writing!
thanks
David
Ngaire Lucaites said:
My son is 40 years old with Multiple Myeloma and amyloidosis with heart,kidney,nerve and GI tract involvement He is being treated at Moffitt in Tampa FL. I’m really worried he may never get a SCT there because of their inexperience with amyloidosis Unfortunately my son has only Medicare insurance and Mayo won’t accept that He is not in heart failure at the present time
Ngaire: check with Boston University Medical Center -- they and Mayo are the premiere facilities for amyloidosis related transplants according to my oncologist.
Gee,I am just about to send a big check to rent a house in Maine for a week in August.....should I? should I? should I? I'm only wearing one shoe at the moment....moment....moment. Suzanne
Thanks Arnie,
Waiting for the other shoe to drop is quite appropriate. So much anxiety comes along with a MM diagnosis. I'm 25 months into it and doing great, but every day I have a little voice wondering if something is going to change.
Hi Arnie,
Wishing you all the best with your DLI. I too had that back in 2010. It brought on more manageable gvh. Interesting enough, I also had an extramedullary tumor in my sinus in 2012, which was treated with radiation and velcade. My last scan showed it , along with several other tumors, are gone. However, I'm continuing on velcade maintenance. I'm doing ok, after dealing with just about everything mm has to offer in the past 11 years. I really enjoy reading your column and wish you all the best in your journey.
Thank you so much for your informative updates. Your writings provide us all with helpful background and explanations to consider for our own MM options. You have a very logical way of confronting the many avenues you have been down. I wish you the best in pulling through the DLI and its after effects. I hope that it brings the relief to you that you describe with minimal side effects. Yes, we all have side effects, but I feel you have had more than any one person deserves. You are a true beacon to all of us who have myeloma.
Nice to meet you Arnie! I just "re-discovered" the Myeloma Beacon after a few years. I too was a practicing physician...Pediatrician..when I was diagnosed with Multiple Sclerosis (no, not a typo) then Myeloma 3 years later...I too have a daughter 15...and a daughter that just graduated from college. Much in common.
I'm sorry to hear about your roller-coaster! I am hoping for the best with the DLI! I hope that will be a real "shoe drop" stopper for you!
You are a great writer, by the way. I'm looking to begin writing myself. Fatigue has really made it difficult to become motivated to write. That blank page is so draining! Anyway...hang in there!