Pat’s Place: Risk Versus Reward
Side effects are a multiple myeloma survivor’s permanent companion. Oh, they may change from month to month and treatment to treatment, but one way or another, you are forced to deal with them.
Doctors always insist you share any negative side effects (there are positive ones?) with them or their nurse immediately. And early on, your oncologist may be quick to switch you from one therapy to another in order to avoid serious, debilitating side effects like severe skin rashes, crashing blood counts, or peripheral neuropathy (pain, tingling, or loss of sensation in the extremities).
Often merely reducing a dose or how frequently you’re dosed may be enough to help. So by all means, consider cutting doses or even switching drugs. But after six years, I don’t feel like I have that luxury.
We have pretty much run out of drugs to switch to. Yes, I could try the two newest FDA approved therapies for relapsed patients, Kyprolis (carfilzomib) and Pomalyst (pomalidomide). But that’s it. After that, my doctors are just guessing and hoping something else will work when they combine things together.
I currently take Velcade (bortezomib) and dexamethasone (Decadron) once a week for four weeks followed by two weeks of rest. And it’s working! But my already significant peripheral neuropathy is slowly getting worse.
It started before my first treatment: a tremor in my hands and some numbness in my feet. Years of Revlimid (lenalidomide) aggravated it to the point I can barely write and my feet are numb. I had hoped getting off Revlimid would lessen the symptoms, but no luck.
Velcade-induced peripheral neuropathy feels different to me. So now I have two different kinds of peripheral neuropathy. Lucky me! It wasn’t bad at first. But now it’s becoming progressively worse, especially after therapy late in each cycle. My muscles become stiff and a bit unresponsive. Sometimes my entire body tingles like I’m a life-size tuning fork. It was really bad back when my Velcade was infused intravenously. Subcutaneous (subcu or subQ) injections seem to mitigate it quite a bit. But now even the subcutaneous administration can’t seem to prevent my peripheral neuropathy from progressing.
I take a number of medications that help. But that’s not what this column is about.
When I met with my myeloma specialist last week, I admitted that my peripheral neuropathy is getting worse. But with a wink and a nod, we agreed to continue treatment.
Risk versus reward. The treatment is working. I don’t want to switch to Kyprolis or Pomalyst until my current treatment stops, so I’m willing to put up with my peripheral neuropathy, and my doctor is willing to look the other way.
And that’s the way I have always approached therapy once I got a feel for what it’s like. If it ain’t broke, don’t fix it! There are risks and rewards involved with any myeloma-related therapy. Think long and hard before dumping a therapy that’s working, even if there are side effects. Because when you’re out of therapy options, time isn’t on your side. There are lots of new drugs in the pipeline, but you can't always count on them being ready when you'll need them.
I’m not suggesting you try and live with unbearable pain or remain bedridden as a result of your myeloma therapy. But for those of you who haven’t been around as long as some of us, you would be surprised what you may be willing to put up with down the line if it helps keep you alive!
Stem cell transplantation, especially donor (allogeneic) transplantation, is the ultimate risk-versus-reward calculation. So much so, I would like to continue this topic in next month’s column, focusing on stem cell transplant options and how differently I look at the process now.
Until then, 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 to be published at The Myeloma Beacon, please contact the Beacon team at .
You are so right Pat, all we myeloma sufferers are soldiers fighting the almost invisible enemy, but whereas twenty years ago we were being wiped out, now we are learning how to hit back ! And before long we are going to win ! It is not just having the weapons, it is learning how to use those weapons to the maximum effect. You have the respect and admiration of everybody Pat, and I like many love to read your articles, well done !
Thanks, Ian! Just trying to help anyway I can. Figure sharing my feelings and insecurities about all of this might help readers crystallize their thoughts, too.
Hey Pat ... sorry to hear the PN is getting worse ... I know too well the feeling!
Two things: 1) I was using gabapentin and nortriptyline with so-so relief from my PN (mostly feet and ankles). Two weeks ago I switched to Lyrica and it's made a major difference in relief ... sometimes, as you know, you just have to keep trying until you find the right drug or combo of drugs. 2) Experts like Dr. V. Rajkumar advocate for once/week Velcade sub-q, UNLESS, there is a need to hit the MM quickly and hard for awhile ... something to consider.
Best,
Steve
Pat. I just can't resist. There are some positive side effects! When I was several days into revlamid I noticed I was having trouble reading. Then I was having trouble watching TV. Then I went to a BB game and the players were all fuzzy. I took off my glasses and voila! my vision was absolutely perfect. I could drive w/o glasses, etc. It was like being a kid all over again. Unfortunately, the revlamid was also cannibalizing my red blood cells and I had to stop the medication. My need for glasses returned but at a different strength so I needed to fork out bucks again for a new prescription. My it was fun while it lasted.
Pat, I hold you up to others as a true soldier in this battle. You and Pattie are real survivors. I hope you find the right solution for your PN. I know the two of you will keep trying, and I pray that God's blessings will see you through. Our smiles are for you.
Pat, the new antibodies coming out work wonders! My husband is on a clinical trial of elotuzumab, Revlimid, and Dex (19 months). He is basically in remission but will continue on the trial indefinitely. Daratumumab (another antibody) is in the works for approval with the FDA. That could be another option for you soon! I think they usually pair it with Revlimid, but it might be the lowest dose, or maybe even Pomalyst. The antibodies seem to work very well. It would be great if they could invent a drug that stopped neuropathy.
Pat,
I have been in a remissive state for 4 years but have been in continuous treatment. I get velcade once every 2 weeks and take 8 mg of dex each time I get my velcade. Although I am in remission my bone marrow is not healthy. My immunoglobulins have been low and I am prone to infections. I contracted c diff and meningitis last year and as a result was put on monthly infusions of IVIG.
I wish I was off all drugs but that is not going to happen. I just hope that the maintenance protocal keeps working, I can tolerate the inconvenience. Immune deficency appears to be my worst side effect.
Pat,
You are the only first person I have found who experienced that “…my entire body tingles like I’m a life-size tuning fork.” sensation. I only experienced it once, at night right after my very first dose of Velcade and my first night after spending a week in the hospital being treated for kidney failure. I felt it across most of my upper body especially in my arms and chest. They discussed peripheral neuropathy with me but it was not expected to happen just hours after the first dose. I was not expecting anything like that at all. It actually was kind of a pleasant sensation. I never felt it again after that first night. I mentioned it to the oncology nurses when I went back in for my next Velcade administration and they were a bit perplexed by it. They had never heard anyone describe peripheral neuropathy as feeling like that.
Everything was fine for weeks after that until one night I woke up in the middle of the night and out of nowhere it felt like I was hit in the back of both calf muscles with a baseball bat. That started the beginning of my battle with more the more common symptoms of peripheral neuropathy. I had to stop Velcade a few months later because it was causing me to black out when standing, something others on the Myeloma Beacon said happened to them as well. Months after that when I came home from my stem cell transplant I went to write a check to pay bills for the first time in a long time and found I could barely write even though my hands were steady and did not tremble. I had been off Velcade for 4 months so I attributed it to the side effects from the stem cell transplant.
Today I am doing pretty well and only have some lingering neuropathy in my hands and in the feet up to the ankle where before it had been up to my knees. I can write like I did before. I am on Revlimid maintenance therapy as well and sometime it seems the neuropathy flares up then subsides again. I am never really sure it is Revlimid or not that is causing the flare ups, neuropathy is supposed to be a uncommon side effect but then I already have nerve damage so maybe it makes me more susceptible. After all the drugs and other treatments it is hard to know what is causing what anymore. I see the low counts on my CBC but I really have not been feeling any serious side effects other than getting sick relatively easy and the occasionally bout of fatigue, but is that really from Revlimid?
I swim about 10,000 yards a week and cycle 30 to 70 miles each weekend. I hiked 13 miles at over 9000ft elevation two weeks ago in Mammoth Lakes. I will be hiking to the top of Half Dome in Yosemite Park in two weeks. I seem to be tolerating Revlimid maintenance really well.
I have been following your battle with time and developing refractory myeloma. Looking for new effective drugs to come out of clinical trials and become available to replace the drugs that are no longer effective. Several other Beacon writers are in the same position. Though I am doing well in remission I feel it is likely I am just a few years behind being where all of you are now.
Hi everyone,
Eric - I have a question for you. How do you manage all that hiking on feet beset by neuropathy? I ask because I'm envious. I have neuropathy in my feet that I think is probably a (relatively) minor case and I don't see how I could do that. It causes me no trouble when sitting or walking short distances and I take no pain medication for it but I just can't be on my feet for long periods without it becoming very, very uncomfortable. I golf multiple times a week but I had to give up walking because I just cannot be on my feet that long. What do you think? Maybe the right pain med would allow me more freedom to walk?
Frank
Great to hear from everyone! Steve I am on a once a week Velcade sub-q schedule and you're right! Helps minimize PN a lot. Did you read Gary's comment? Improved vision using Revlimid! Not sure it will be a breakthrough eyesight medication, but take what you can get! Monica, I agree about the immunotherapies possibly providing additional pathways to get to our myeloma. How encouraging elotuzumab is working! Ron and Kent; appreciate your reading and chiming-in. Thanks! Sounds like Eric and I have both experienced "full body neuropathy." Glad it doesn't last long -- at least it hasn't for me so far. Eric is so active. Are you using dex too? Wonder if you have experienced any muscle wasting or inability to build new muscle like I have? Best of luck everyone!
Frank,
Like Pat described, the neuropathy I have is kind of strange. It seems my feet are relatively numb to some sensations and hyper sensitive to others. When it was at its worst walking on any kind of moderately rough surface with bare feet was unbearable. At the same time I had difficulty telling the temperature of water when I dipped my foot into it. I could not tell what position my legs were in after waking up from sleeping until I looked at them. I was taking morphine ER and hydromorphone for the pain but it only helped a somewhat and I became dependent on them. The different anti-depressant medications did not help much either. The best thing I found for the pain at the time was swimming, it could make the pain disappear completely but the effect did not last for too long after I got out of the pool. I still have some difficult with rough surfaces but with shoes or boots it has not been a problem.
Pat,
I had to stop Dex in July of 2011 at the same time I had to stop Velcade. I cannot say that Dex caused me much muscle wasting up to that point in time. I never got the moon face look either, the biggest effect on me were sleep problems. I would not sleep at all for up to two days, I mean wide awake not sleeping. It increased my appetite a lot and I ate quite a bit but did not really gain much weight. After I stopped Velcade and Dex in July though I started having difficulty eating much at all and it became a real battle to get any calories down. I would go for days feeling little or no hunger and not eating. If I forced myself to eat I often could not keep it down. It seemed Ensure was the only thing keeping me going. I am 6’ 1” and was about 205lbs in July and by the time I went in for my stem cell transplant at City of Hope in October I lost about 40lbs and was down to 160lbs, 155lbs when I checked out. I had a lot of muscle wasting by then but had been off Dex the whole time. Exercise for me when I came home was walking to my mail box a few times a day, which was about all I could do. But I recovered pretty quickly and had no difficulty rebuilding muscle. I was riding doing 25 mile bike rides by February and even did some skiing in March. By that summer I was doing 80 plus mile rides, riding faster and farther than I had even before I had myeloma. I was really surprised how well I was doing, I was expecting a long hard battle over the year, and maybe never, to get back to fitness I had before all this started. I really dread possibly having to go back on Dex someday, it was bad for me the first time but from reading other peoples experiences not as bad as theirs.
Yep. Dex takes all the fun out of chemotherapy!
Dear Pat,
Indeed, the antibody drugs seem very promising, especially daratumumab that has been fast-tracked by the FDA. My husband has (after 4 years) already been treated (for 13 months) with Pomalyst and is now receiving Kyprolis, which as been effective so far. We hope that dara will be available at his treatment clinic by the time Kyprolis fails. However, we have also raised the issue of revisiting previous drugs, such as Velcade, which might be possible even though he was once refractory to same.
I assume that you read the recent summary of the article written by Dr. Anderson and Dr. Munshi, which appeared on the Beacon, about the future of myeloma treatment, including the BET bromodomain inhibitors. Do you know about them? Dr. Bradner (Dana Farber) has directly informed me that his bromodomain molecule (to replace JQ1) known as Ten 010 will be in trials soon, although I do not know how soon for myeloma. If you write to Dr. Bradner and/or Tensha directly, they will respond. You may have seen his TED talk from several years ago.
Best wishes, Gratia
I am dealing with same issues but I am almost 27 years old and was diagnosed when I was 19... Started RVD in April '12 for first treatment since I was Dx. I haven't had a SCT and don't plan on it til chemo stops working. I'm at 0.5 m spike and was at around 4-5 m spike at April '12 with 70% of my marrow myeloma. Since I was DX I haven't felt sick at all and continue to feel unbelievably great. I am writing this as I wait for my once weekly shot of Velcade. But one of my biggest fears is since I'm so young, that taking all these meds will affect me negatively later on in life... Don't really have a choice considering how good my life is going. But being in the same place with manageable nueropathy and insomnia, migranes, and weight gain from dex I look at it as if its just part of the plan and that when people see me on the street they have no idea I'm sick and I kinda like that alot. I still go out and live my life to the fullest possible and will continue too with my doctors guidance but I'm just starting the journey of treatment after 7 years of monitoring. Hopefully will continue on current path and get SCT when really necessary and not cuz it's part of standard protocol... I am one of the minority but am an example of living with monitoring without much treatment. Best of luck and we all pray for a cure and more options which they seem to come out every 5-7 years!!!
Mark
My daughter was diagnosed with MM at 32 in 2012. She did 4 months of Vel/Dex which put her in Complete Remission. It also gave her a blood clot, neuropathy & irregular heartbeat. She had a transplant in August 2012 after which she was told again she was in complete remission. In Dec.2012 they put her on Revilmid maintenance. They lowered the dosage & now took her off it because it lowered her numbers so much. We will see in August after tests what comes next. It seems like a guessing game to me. I worry about all these meds doing other things to her body but I guess there is no choice.
Gratia, I've corresponded with Dr. Bradner about JQ1 for the past ten months or so. But I'm not familiar with BET bromodomain inhibitors. I need to check this out! Thanks!
Mark, thanks for sharing your story! There are more young myeloma victims out there than people think! Glad you are doing so well. But no fun living with all the side effects, is it? And Terri, sounds like your daughter is doing well, too, after a rocky start. So many stories, each with different wrinkles. We all have a lot in common, though. Glad the hard working Beacon staff is around to help keep us informed!
Hey Pat, I really believe you should stop the Velcade. I experienced the same problems as you and I didn't tell the Doctor because I wanted the treatment to continue. Big Mistake!! I developed Grade 4 PN and it was so bad that they put me on hospice and believed I would die from it. After 2 months of agony, God answered my and others prayers and the cramping stopped, but the pain in the feet and legs remain causing me to take Dilaudid every day. Don't make the mistake I did. Happy 4th.
Hi Pat, Thank you for writing your Beacon columns. I always enjoy reading them. Although the news is not always pleasant it is interesting to read what others are going through. My husband has had MM for 6 yrs. and also has end stage renal failure due to LCDD. He has been doing Peritoneal dialysis for a yr. and a half. He has suffered tremendously with neuropathy in his feet, legs, and hands for almost two yrs. He went to see a neurologist last week and was told he should be taking Gralise (gabapentin time-released tablets). For a week now he has gradually increased the dosage and has finally found relief. Hopefully he will remain free from his neuropathy. But if not he is only using half of the maximum recommended dosage. So he can increase it if need be. As with all meds though we never know how long they will work. Keep up the fight against this terrible disease. And again, thanks for sharing by writing for the Beacon.
Thanks for the heads-up, George. But I'm not going to give up something that's working at this point unless I have to; I'll be careful. Promise!
Leathea, Gabapentin helps me, but I'm not familiar with it in a time release form. Glad its helping!
We met a while back and you mentioned you were taking 8 grams daily of Curcumin C3 with bioperine. I kidded you that you might turn yellow/orange. Have you become aware of a new more potent (4x and no yellow) Curcumin C3 Reduct from Sabinsa? I have not found a tablet maker that has yet placed this on the market (like Dr's Best)but maybe this new formulation would help.
I remember. But actually, I take between 2 and 3 gm daily. And I'm going the other direction; found capsules at Walmart. 80 500 mg for $7. Mostly turmuric so need to take a lot more. I'm taking several different brands/types and hedging my bets. Look, like many other supplements who's to say which type is better? So I take a few of each!
Get new Myeloma Beacon articles by email.