Pat’s Place: Is A Therapy Tolerable? It’s All Relative
Last month I promised to update you following the discovery that I had developed several large plasmacytomas (lesions or tumors) under my ribs. I had just started radiation therapy to relieve the sharp pain I felt there.
I’m happy to report that most of the pain is now gone.
Reflecting back, it’s been a tough month.
Leading up to the discovery of the plasmacytomas, I had been feeling much better than in the past, thanks in part to ongoing testosterone therapy and a maintenance regimen of once-a-week Velcade (bortezomib) and 20 mg of dexamethasone (Decadron) for four weeks, followed by two weeks to rest. For close to a year, I almost felt normal again.
The discovery of the plasmacytomas changed all of that.
In addition to ten days of targeted radiation, my medical oncologist and my myeloma specialist agreed to resume Revlimid (lenalidomide), Velcade, and dexamethasone (RVd) therapy immediately. The plan was to increase the frequency of my subcutaneous Velcade injections to three weeks on and one week off, to add 15 mg of Revlimid daily, and to increase the dose to 40 mg of dexamethasone during the same three weeks I receive Velcade. I was also on a half dose (12 mcg) of fentanyl for my rib pain.
That’s a lot of everything to be exposed to all at once. I wasn’t bedridden, but I felt like I could be!
Since then, I’ve been able to drop the fentanyl, and my radiation therapy concluded two weeks ago.
My doctors suggested I stop using Revlimid early last year, not because it had stopped working, but because it was suppressing my white blood cell counts. So far, my counts are fine, but I still don’t feel like myself.
I was surprised a therapy that I had endured for months on end before would bother me so much now. But my wife, Pattie, reminded me that I felt this way then too. I describe it as “punky.” I feel fatigued, like I’m coming down with the flu much of the time. I’m having trouble focusing on things, and my short-term memory is shot.
My peripheral neuropathy (pain, tingling, and loss of sensation in the extremities due to nerve damage) is also continuing to advance very slowly. The bottoms of my feet are now completely numb. My muscles become stiff and unresponsive following Velcade injections.
But peripheral neuropathy is the least of my worries.
My primary concern: Is the myeloma responding to this therapy combination that has worked for me in the past?
I won’t have the answer to that until week’s end. Even then, if may be too soon to tell.
Feel like you’re caught up? Good! Because you know me – I can’t write a column without sharing my thoughts and feelings about what I’m going through. While it isn’t any fun, I guess things could be described as tolerable. That is, tolerable for someone who is running scared and peering back over his shoulder after relapsing for a third time.
That’s the perspective I would like to share with you this month. You must be familiar with the term, “Everything is relative.” This simple phrase perfectly describes how it feels as I march along on my myeloma journey.
I’m not sure I would have considered what I’m going through now as “tolerable” a number of years ago. For one thing, I’m a lot tougher now. But mostly, it’s the “relative” thing. I’m willing to put up with a lot more discomfort and inconvenience now than I was back then.
In the beginning, everything is about quality of life. We ask for dose reductions, or to switch medications, if side effects are uncomfortable or inconvenient.
That long first remission or period of stable disease is like a honeymoon. The serious, life-or-death nature of things still hasn’t quite sunk in.
But as time between relapses shortens and I cycle through medications, my self-preservation instincts start to set in. Tried-and-true therapies don’t work as well, if at all. I find I’m willing to put up with a lot more than I once was. Seeing one’s options dwindle – and catching glimpses of what things might be like in the end – will do that to a person.
Of course, all that matters is I’m here and alive today. I’m able to write, wash dishes, and walk the dog. I may not feel great doing it, but it sure beats the alternative! I feel fortunate to still be around.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you Pat for sharing about your personal journey. As in the MM support group I attend monthly in Eugene OR, I am amazed at the wide variety of presentations and development of symptoms that patients face. We can and do learn from and support each other, and hopefully can become experts on our situations. I agree that myeloma specialists are the best resource, especially with unusual presentations, but the Myeloma Beacon is often most useful.
I have used virtually all FDA approved MM therapies, becoming resistant to all, but in the last four months, I am on a genomic based therapy (BRAF inhibitor) which has for the first time since my dx in 7/2011 brought down my kappa free light chain levels to normal. The treatment has unusual side effects, but I can't complain. It allows me to enjoy part time work and great times with family and friends.
No one knows how long it will work, but we always try to stay one step ahead with a plan (in my case, a MEK inhibitor). You more than anyone are a great resource regarding options. In my case, genomic analysis of my original rib plasmacytoma has made all the difference. It is available commercially, and may be covered with insurance (in US), or as a part of a trial. This would be a great topic to explore. My oncologist and I are publishing a case history about my situation in the hope that more MM patients can explore possible therapeutic options "outside the box".
Best wishes to you! Keep up the good work, feel good and keep smiling! Jan
Your a tough guy stay strong and fight thru it
Your words are inspirational
One myeloma friend of mine describes his journey much like a 12 round boxing match. He said in the early rounds he zigged and zagged bouncing around fighting the disease with vigor and determination to win the battle. Then the middle rounds where remission allowed him to win a few, have a setback or two along the journey. Then the later rounds where the toll started slowing him down, taking cheap shots at him, knocking him off his feet at times. And then he said "but the fight isn't over yet". The final bell of the match hasn't rung yet. Sounds a lot like a boxing match to me also.
Thanks for the article Pat. Keep fighting and getting back up!
Pat, Thank you for always sharing the "how you are really doing" aspects of your journey. You are a tremendous resource and inspiration. I continue to wish you all of the very very best.
Dr. Stafl,
Thank you for sharing your valuable thoughts as well. May I ask you to provide additional details about the genomic analysis which is commercially available that you referred to? How do we go about obtaining this analysis?
All the best to you.
Pat
I don't know if you tried Vitamin B6 and Lipoic Acid for the neuropathy. It works great for me, with almost no neuropathy even though I have been through Velcade and presently using Revlimid. Info is found on the Beacon website if you search for Lipoic Acid.
There is no doubt in my mind that MM patients get tougher as the treatment times increase. Keep upbeat and thanks for being so open about your trials with mm and your treatment regimens. It helps all of us immensely.
Glad to hear you're back on the saddle Pat. Thanks for your insight and information. It's much appreciated.
Jan, so glad "out of the box thinking" has given you a new lease on life! Looking forward to reading your report!
Thanks for the kind words, everyone! A boxing match? Good analogy...
You certainly are not a whiner but a very optimistic thinker which has served you well. You enjoy all that life has to give, even the simple things, and this is the secret to your longevity. I look forward to your next letters as they help the other MM survivors cope with this painful disease. You have become a very influential teacher for MM patents and their caregivers. We thank you very much.
In response to Dana, my oncologist arranged a genomic analysis on the original biopsy of my L 5th rib plasmacytoma, which led to my diagnosis in 7/2011. There are several labs that do this. Mine was done at Foundation One in Boston. Fortunately, the mutation found in my case was actionable, meaning the BRAF mutation diagnosed has a FDA approved Rx: Zelboraf (vemurafenib), a BRAF inhibitor approved for treating metastatic melanoma.
After just two weeks of oral therapy (960 mg po bid, with weekly 40 mg dex), my kappa free light chains dropped from 41 to 2 mg/dl, and they have been normal since. I was able to reduce the tumor burden with Kyprolis and Cytoxan for four months prior to this therapy, going from 277 to 41, but then more symptomatic lesions were noted on a PET/CT scan. Two months later another PET scan revealed a near complete resolution of previously imaged MM lesions. There are dermatologic side effects, incl. two focal squamous cell skin cancers which have been excised, and migrating bone pains, but I am grateful for this response, which allowed me to walk my daughter down a snowy aisle at her outdoor wedding in the Canadian Rockies!
This is not for everyone, but identification of the initial mutation (clonal), or a subsequent one (subclonal), should lead to an ever increasing individualized specific armamentarium against MM (and many other cancers). The best indication for this testing now, which is getting broader and cheaper, is in high risk recurrent cancers that have failed conventional therapy. I wish all my fellow MM patients on this path well tolerated treatment with great, durable responses. Enjoy every day: Carpe Diem! Jan
Pat
You are so right. I am constantly amazed at the ability of people to adapt and accept new circumstances. Your mind set about "tolerable" changes as you accept the idea of just doing what you have to do to stay alive. They say the brain is a discounting machine. As time goes on we tend to discount both good news and bad news as it becomes part of our norm.
You are good to share your medical problems with us Pat, instead of 'suffering in silence'. Your experiences help so many to assess their own situations too I think. i hope that you get past this 'rough patch' soon too. Keep on writing and blogging, but don't forget to enjoy life too with Pattie!
I appreciate the discussion of quality of life and making decisions of "what is tolerable." Going through some of that right now with my own treatment. Your column this month gives me one more perspective. Thanks, Pat!
Thanks for the perspective, Pat. Many of us are early in the process and it's good to hear about what's likely to come.
Glad I can help! It means a lot to me when Arnie chimes in; his two cents worth are valuable, indeed! Jan, too. What a well informed readership we have!
Pat, you mentioned in your article that use use testosterone supplementation. I too have a low T-level and was prescribed a topical jell for supplementation. That was before my mm diagnosis. I have tried to research whether testosterone has any detrimental effects on the induction drugs I am on. I discontinued this until I get into remission. Can you or the readers share any knowledge about the safety of using topical testosterone while on these MM medications? I am a pharmacist and my research has not given me a definite answer to this question. My drug regimen is CyBorD. Velcade subq weekly, oral Cytoxan 800mg weekly and dexamethasone 40mg weekly. And zometa infusion monthly. Thanks for any suggestons from the readers is appreciated.
I wrote about thesubject a while back, Randy. I'm not a physician, but consensus seems to be that testosterone therapy is safe for a myeloma patient. But what really sold me was the benefit increasing low testosterone levels can have on our bones; it is proven to help increase density. Dr. Jan above may have an opinion on this. I believe he contributed intell about it at the time...
Pat,
Thanks for the column. I'm glad to hear that the pain is better now, and I hope that in next month's column you will be able to tell us that this therapy is beating back the myeloma for you. I have only had one line of therapy so far, and I wonder what things will be like further down the road. Your columns help me get an idea about what to expect. Best of luck to you!
Ah, the good old days! First therapy still effective and life is good! Here's hoping your honeymoon period lasts for many more years. After that, still not so bad much of the time. Life is good! Good luck, Mike, and thanks for reading!
Hi Pat, It is amazing what we can deal with when we have to & equally amazing what we can bounce back from. I agree with you; in most of us the will to survive is very strong & what we will put up with in order to stay alive for even a couple of months when the options are dwindling can be enormous.
I think it is fantastic that you write about the situation you find yourself in at present (I could not have done it when my options were dwindling). It helps other patients to know they are not alone.
Anyway, I didn't have a remission during my chemical treatment & only achieved one since my allo - so I guess I am in my honeymoon period now. Slightly back to front but not without the emotional upheaval.
All the best.
Libby, cases like yours are what intrigue many of us about the possibilities of allos. Awesome you are doing so well!
We will all beat this devil, brothers and sisters. Stay strong ! Pat's sharing and collective knowledge help all of us to find our paths .
Thanks for the article Pat! I agree with you completely and the premise seems to be backed up according to all of the comments. QOL is relative. When it comes down to choosing between QOL and staying alive, it's amazing what we are able and willing to put up with. So many here are living proof of that!!
Thanks Van and Scott! Yep, we're a lot tougher than we think. I used to be afraid of needles. HA!
Hi Pat,
It was wonderful to meet Pattie and you at the Beach Party in Tampa. I had a great time and met many people with our common problem. I know that you are struggling right now with your condition and need to find the right treatment to tame this beast. Try to keep your mental attitude positive as best you can. I'll even call you with a joke a day to keep you smiling. Seriously though, my prayers are with you and I know it won't be long until you drive through the curve and the MM takes a better direction. Best regards, Larry
It was great meeting you, too, Larry. But I need to say this. I think it can work both ways. Stay too positive to the point of denial and I believe that can have a negative emotional effect. And remember that there is no proof that staying positive helps you live longer. Better, maybe, but not longer. So that "glass always half empty" person that moans and groans all the time may outlive us all!
What do you guys think of the next generation of drugs: Krypolis and Pomalyst? Has any one had positive experiences with them? Same or worse side effects?
For the most part, I've heard great things about both, Van. Fewer side effects; less PN with Kyprolis and Pom seems a bit easier on white blood counts. Results match or exceed Velcade and Revlimid. Up to 50% of patients respond to each after becoming refractory to the other IMiD or PI. So good news all the way around. Now, that said, some patients still experience problems, like any high impact drug. Hope my "patient perspective" helps!
Pat,
As usual you are an inspiration, especially for people like me who were recently diagnosed and just starting on this MM journey. I wish you well.
It is amazing how tough we can be when we need to be. I have recovered from pneumonia that kept me in the hospital for a week and resumed my treatment with Velcade and dex this week. Still planning on a stem cell transplant in May. I am not returning to work until after I recover from the transplant. Fortunately, I have lots of sick leave and short-term and long-term disability through work. Having good insurance and benefits is so important when something like this happens to you.
Thank you for keeping us all informed and sharing your experience with us.
A job with insurance and benefits. I wasn't sure there were any of those around anymore! Glad you're doing so well. Good luck with the SCT!
Get new Myeloma Beacon articles by email.