Arnie’s Rebounding World: The Roller Coaster Ride
I have taken a few months off from writing my column to deal with my multiple myeloma health issues and to sort out my next steps.
Most of The Myeloma Beacon’s columnists are upbeat, positive, or even humorous. I was feeling none of those things. Most of the emotions I was having were too unsettled, confusing, and raw to write about.
The last few months have been a roller coaster of ups and downs. At least for now, the dust does seem to be settling somewhat and I felt it was time for an update.
My M-spike rose rapidly in December, despite trying several different treatment regimens that included Velcade (bortezomib), cyclophosphamide (Cytoxan), dexamethasone (Decadron), and Revlimid (lenalidomide).
So we did a couple of cycles of chemotherapy with dexamethasone, cyclophosphamide, etoposide, and cisplatin (known as DCEP) and got a pretty good response.
In order to try to maintain the response, Dr. Ken Anderson at the Dana-Farber Cancer Institute in Boston advised that I try a couple of drug cocktails that included the histone deactelyase (HDAC) inhibitor Zolinza (vorinostat) along with Velcade, Revlimid, and dexamethasone.
Unfortunately, this was not effective. My M-spike started to rise again very rapidly, putting me in a really bad spot and running out of options.
Even the allogeneic (donor) stem cell transplant, which had been discussed, was off the table in the face of rapidly progressing disease.
My doctors at Moffitt Cancer Center were pessimistic and at one point recommended I stop treatment and just enjoy what time I had left.
To me this option was totally unacceptable, and I pushed for more treatment. I was nowhere near being ready to be done.
After much discussion, everyone seemed to agree to try a cycle of Velcade, thalidomide (Thalomid), dexamethasone plus cisplatin, doxorubicin (Adriamycin), cyclophosphamide, and etoposide (known as VTD-PACE) chemotherapy.
The response to this has been nothing short of amazing. After one cycle, my M-spike dropped from 2.2 to 0.3, and a recent bone marrow biopsy was clean with no myeloma cells.
Needless to say, this has been cause for renewed optimism and reopened options, including a donor transplant, which were not available a couple of months ago.
From the time I was diagnosed over six years ago, the mantra has always been to just stay alive long enough for the next wave of drugs to come along.
Disappointingly, it does not appear that the next wave of drugs will suffice. None of the experts, including Dr. Melissa Alsina and Dr. Anderson (the guru of new drugs), feel that the new drugs stand to offer any meaningful alteration in the course of my aggressive disease.
Dr. Anderson is advocating strongly for the donor transplant as the next step. Even the folks at Moffitt, who were initially opposed, seem to be coming around to this idea.
So for now, I am doing a second cycle of VTD-PACE to try to drive my disease down further, and then it looks like I am heading for the donor transplant. I recognize that it is high risk, but I do not see a lot of other options and I am willing to take the chance. I’m not ready to give up yet.
I’m not sure how often I will continue to write my column, but hopefully I will be able to write about my donor transplant experience on the other side.
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 am so thankful that you persisted and that your M spike is has dropped so much. Sending my prayers.
I am so glad to hear that you are doing better. I was concerned by the fact that your column hadn't appeared for a while.
I hope you continue to respond to your current treatment and that you're able to successfully complete the allo transplant.
Hi Dr. Goodman, I have been wondering about you for a while now and am glad to hear they got it under control allwing you more options. I wish you all the best! Terry from NJ
Hi Dr. Goodman
So glad to hear you persisted and it came out in your favor!! Sometimes only we know what is best for us. Absolutely we are not the experts but, sometimes I feel we have intuition that is unexplained. I believe it's Gods Divinity. either way I am so happy for you.
Best Wishes
Art
Hello Arnie,
I am so glad to read from you. I understand you spent very difficult moments recently. As many readers and patients, I wish that you will keep this fighting spirit I admire. Stephane from France
Arnie-
I am a frequent reader of your column and I have enjoyed all of your insight. I am so sorry you are faced with these difficult decisions. As you know, you need to be your best advocate. I send you positive energy and prayers that our M-Spike continues to drop. Please keep us posted.
Fellow MM fighter and Survivor,
Jeanie Dreyer
I am fairly new to the beacon but I read your article. It seems my story is similar so I understand your emotional roller coaster . I was only diagnosed in 2010, had SCT in Nov 2010 , was doing fine on no meds until Feb 2012. M-spike rose to 1.1. On cytoxin, rev,prednisone. Things are holding. Transplant physician wants to do donor transplant soon but I feel fine. He doesn't want to miss the window of opportunity but states my quality of life may be different post transplant. Now I am trying to weight my odds. I am glad and thank God for your positive outcome. Stay strong.
hI Arnie...such a relief to hear about your recent good responses to the treatments...great to hear that there was no sign of myeloma cells in the bone marrow. Always enjoy reading your columns, and the fact that you have been treated for six years now makes you a really well informed patient, as well as a brilliant physician, for myeloma issues. Wishing you all the best and hope the latest results hold for you too. Good luck in doing a transplant, if that is what you decide to do.
Arnie,
I so appreciate the honesty of your columns. None of us are upbeat and positive all the time and it is helpful that you acknowledge the difficult times as well as the times of hope.
Is it a mini allo that Dr Anderson is recommending? I had an auto-allo in 2008 and am grateful to be doing well. I know that myeloma presents very differently in each of us. We hope that you get the results that you're working towards with this or whatever treatment you and your doctors decide upon.
Hi Arnie,
Thank you for this article! I am so sorry for all that you have been through, but I appreciate so much your honesty and candor. I have read so much research on the new treatments, been to conferences, and have a brilliant myeloma specialist (Keith Stewart at Mayo) but options for progressive disease with velcade and revlimid are uncertain and not readily discussed.
I can understand how you must be feeling, and I am so happy you found a drug combo to reduce the myeloma levels! I am 43 and have already had 2 auto transplants and recently it appeared I was relapsing again, which would mean having used up all my FDA approved options. To hear that clinical trials will not buy much time and that an allo, although risky, may he the only option for any real time is such a scary and sobering thing!
Now I am grateful that I will likely be given the option of an allo. I never even thought of not having that option, as my doctors have always discussed it, but now, after reading your article, I really appreciate the option.
I said I would never have an allo, but the closer I get to the reality of it, and in the face of death, I too, would choose that option.
Best wishes to you and I wish you much success and many more " good" and happy days! I hope things continue to go well for you! I can relate as I am writing on one of my "good" days...many days I don't want to deal with the myeloma world.
Thank you for acknowledging the reality of the disease. Hope you continue to kick some myeloma butt.
Kris
Arnie,
Thank you so very much for the update. As the caregiver, I am the person who worries about "what next". Reading your Beacon articles has helped me tremendously. I very selfishly hope that you continue to do well and continue to contribute to the Beacon. My thoughts and prayers are with you and your family as you take the next step of your journey.
Lyn
Arnie,
So sorry to hear about your challenges. So glad you found a combo of drugs that has been effective.
I think you should appeal to ONYX for compassionate care use of carfilzomib. Have you tried that option?
Arnie, I am moved by your determination and please continue to update us, i wish you and pry for your next step with allogeneic.
My wife 46 years of age, just 1.2 year diagnost with MM, after a very difficult stem-cell operation, her M is up and recently used Valcade, not working, any way doctors also recommend allogeneic in the next year or less.
i wish you can tell us what you heard and know about allogeneic. from the Dana-Farber. at UC San Diego and at Hope in LA, they tell us, they do allogeneic. all the time and should not be such a huge scary thing?
Raad
Arnie,
What a terrible year you've been through. You are not only a great inspiration, but your column has helped to increase my knowledge. Your insight has helped me to deal with the ups and downs of this disease since I was first diagnosed.
You are in my thoughts and I will, as always, look forward to your next column.
Thanks everyone for your thoughts and wishes. We are moving forward with the allo transplant fairly soon, while i have this window of opportunity. Will try to keep everyone updated on the process
Good luck with the allo. My husband won't consider an allo, so he is on a clinical trial of elotuzumab, revlimid, and dex. It is working very well and from what I have read of the study, NO ONE has even started to relapse while on it. I am hoping this option was presented to you. It is a great combination. I hope all goes well for you!!
Arnie,
How do you find a match? Do the docs have you look into your own family, or in a donor pool? I'm so ignorant of this faze of treatment which many of us may be approaching as the new drugs and treatments give us longer survivals.
Julia
Hi Arnie: I also appreciate you sharing your challenges with us. At UAMS, the standard starting treatment following diagnosis and before transplant is several cycles VTD-PACE. You seem to be caught up in the dilemma of the "gentler" treatment philosophy versus the "hit it with everything" at once.
Your entire column is driven by numbers rather than symptoms. I am extremely curious why the folks at Moffitt were ready to give up.The problem of treating the patient rather than numbers is the challenge that I am facing personally. Any insights would be appreciated.
Arnie:
It was a pleasure meeting you and we wish you nothing but the best.
Good to hear from you Arnie and that some progress in the right direction is coming forthwith. If it's any consolation, I met a woman briefly while on a check up in Arkansas who fought MM hard for 10 years and now is in CR and only remembers she has MM when she gets pulled back for check ups. It sort of took my breath away to think of a whole decade working to stave off the beast. But I was awed by the fact that she did and lived to tell the tale. My postulate for you is the breakthrough you seek and that you are around writing columns, challenging us to think for a good long while.
God speed, fellow traveler. The hopes and wishes of all of us suffering from this miserable disease are with you.
We have to remember and take hope from the amazing cures with such as leukemia and Hodgkin's lymphoma! I really believe this is for us too. Pray God it is in time for us who are here today.
Julia
Best of luck on your allo .Godspeed and thank you for sharing. Thoughts and prayers with you.
Dr. Goodman,
Full Allo or Mini-Allo? I've had the mini and it was OK. The GVHD is a big concern, but tolerable. A real adventure! Hang in there tough.
God Bless you and your family,
Steve J
Wow, just shows us again how we have to keep fighting and NEVER give up the fight! Good for you!
Wow! That's freakin' amazing!!!
I am so happy for you...I can't imagine what it must have been like to have been told by your medical team that it was time to "get your affairs in order" and to just try to enjoy the time you have left.
But Dr. G. continued to fight and BAM! He broke on through...that's what I'm talkin' 'bout!!!!
Thank you SOOOOO much for your courage...for the rest of us on the journey we will always have your story to help us get through some of the hard times. Will be looking forward to hearing about your forthcominbg success with your allo!!!
Steve
Greetings Arnie! I am so pleased that you have fought and got the MM tiger in the cage again, hopefully for a long time. Although an allo is certainly a formidable step, it is the one option with the possibility of a cure. May it be so for you! I am back at work after recovering from my ASCT, and in remission. Your advice and support was greatly appreciated. Please keep on sharing your journey. You have many fans supporting you across the globe!
Dear Dr. Goodman,
We are all pulling for you and are glad you wrote this column. You said "Most of The Myeloma Beacon’s columnists are upbeat, positive, or even humorous," and that you hadn't been feeling those things. All of us with a MM diagnosis have been there, as if hit in the gut or with a bomb going off in our lives. At least I know I felt that way, and it is brave of you to share these real feelings that we can relate to. Most importantly, you show us how to endure and continue on the journey with your will intact. I wish you the very best with the transplant.
Linda
Hello Arnie,
I'll call you Arnie since that's what your mom and dad call you. They were our neighbors on 10th street for many years and we frequently bump into them now around the neighborhood. They are two of the nicest people I know and very worried about their son.
Please include me on your mailing list for the newsletter.
20+ years ago my nephew had a bone marrow transplant for aplastic anemia. Today he is married and has two beautiful children.
Best of luck with your treatment.
Doug Buchan
Hi Arnie
My heart goes out to you and what you are going through. Your column is one of the few that I read as your situation is similar to that of my 47 year old husband. He was diagnosed in 2009 and so far has undergone 2 autologus transplants, Thalidomide (no response and during which time he contracted meningitis and pneumonia with RSV), Velcade (which he did respond to and had his 1st transplant, relapsed June 2011), then Revlimid (again, no response), Doxorubicin (good response followed by 2nd transplant in March this year) and now waiting to see if his levels are low enough for him to meet trial criteria for an allogeneic transplant. At the last count a few weeks ago, they weren't quite there but he is waiting for his bone marrow aspirate results (test due 20th June) so we'll know hopefully at the end of June. Like you, his disease has been 'aggressive' from the start. He experienced a DVT on his leg in 1998 and again in 2000 and looking back, we're now wondering if this was the start of it all. We have everything crossed for good results for him, and wish the same for you and that your transplant will be a success.
Looking forward to hearing from you 'on the other side'.
Anne
I am thrilled to hear of your progress! You were so encouraging when I spoke with you after I was first diagnosed last November. I often wonder how you and your family are doing. I allow myself to check the Beacon only once a week, so I don't obsess on MM. However, news from your "rebounding world" has been missed (& what a rebound!). It was a great pleasure to find your post today! Look at you, keepin' the life force flowing! All the best to you and yours!
Beth Myers
I am touched by all the support and comments. I am moving forward with the allo transplant process. A donor has been found and I will be having what is known as a non-myeloablative transplant, which falls in between a full ablative and a mini. I still wish there was another way, but believe me, I have investigated all the other options including the suggestions by some of the readers including carfilzomib and elotuzumab. It just doesn't seem like at this point they offer enough promise to fundamentally alter the course of my disease and I run the risk of losing this "window" of opportunity for the transplant.
Dr. Goodman, I am so glad I found your column. I am praying for you and your family.I was with my nursing students at Moffitt and I was thinking of visiting you . I wasn't sure if you were up for it. Please know that I will keep you in my prayers.
Dear Dr. Goodman,
I wish you all of the luck.
A few columns back, you gave some advice that really hit home and helped settle an internal dispute I had been having with myself for 2 years. No need to go into details, but I want you to know your writing helped me immensely.
Take care.
I wish you success in going forward with the allo transplant, and I pray your health remains strong. My gynocologist spoke to me about the possibility of an allo in the future. His daughter has some form of leukemia, and he has attended bone marrow disorder workshops to keep abreast of developments. "Remember how your own cells rescued you from the high-dose chemo? Just think of that process when performed with cells from a stronger donor without an immune system disorder. The stem cells will develop and swim faster and stronger, and they will be set on kicking the myeloma bums out. This is the advantage of the allo transplant. Keep an open mind if and when your doctor approaches you about this possiblity. Yes, there are risks, and there are greater risks with myeloma. Remember the allo transplant is the right step to take in a patient like yourself."
I pray for you and your family. You and your wife and children deserve to have more time together. We all deserve to have more time with our families -- and to enjoy that time and be active. Thank you so much for your series of articles which offer a new insight into treatment of MM.
Hi Dr Goodman,
Good to hear from you but PLEASE just put all your energy to getting through this.
Strong and positive thoughts being sent to you and your family from Fort Lauderdale. I will be at Moffitt on July 23 having my 100 check up with Dr Alsina post tandem.
Michelle Gillet
Thank you so much for sharing. Can't tell you how much it means as we go down a similiar path. We wish you the best in your battle.
I am fairly newly diagnosed and in early treatments. I have heard about your battle, your courage, your column, and so very glad you are trying to write again. you and other writers probably have no idea how helpful both your good reports and your not so good reports are. this disease is new to a lot of us every day....old to you and others.....but there is a least one preacher in Nashville who appreciates some honest words from a fellow struggler. Of course I pray for restored stability and health do you and a great outcome for me....but we just don't know what is ahead for us do we. Keep believing, trusting, fighting......we believe in you,.....
Hi Arnie,
Came across this new research and clinical testing on a drug call Miraviroc...apparently some very AMAZING success with reduction of GvHD in allo sct patients.
Check it out here: http://tinyurl.com/6o7qkyd
[Moderator's note: This news also was mentioned several days ago in the Beacon's forum. Here is a link to the discussion there: http://www.myelomabeacon.com/forum/selzentry-and-graft-versus-host-disease-t1176.html .]
Dear Arnie, on this Sunday morning my thoughts and prayers go to you. I look forward to hearing about your progress with the allo transplant, whenever you feel like sharing. May you be well on your way to recovery, and the possibility of being free of MM permanently! Best wishes, Jan
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