Letters From Cancerland: The Velcade Velocipede
Velcade is my velocipede.
Velocipedes were all the rage in post-Civil War America. Known also as “boneshakers” for the rough physical treatment these early bicycles gave their riders, they proved tricky to master.
Novelist Louisa May Alcott wrote a velocipede into her novel An Old-Fashioned Girl. A character in the novel, Tom, “whizzed by [on his velocipede], arms and legs going like mad, with the general appearance of a runaway engine.”
With no brakes and only primitive steering at his disposal, Tom soon ended up in the gutter, with a “great cut” that required stitches.
I know just how he felt.
I have had myeloma for so long that the only “gold standard” drug when I was initially diagnosed was thalidomide (Thalomid). The single biggest change to the Cancerland landscape is the plethora of new drugs, with Pomalyst (pomalidomide) being the latest addition to the pharmaceutical pantheon.
When I relapsed and resumed treatment this past fall, my oncologist recommended and prescribed Velcade (bortezomib). My current regimen is one weekly subcutaneous injection with a chaser of dexamethasone (Decadron), three weeks on, one week off.
I just completed my fourth full cycle on March 5. As I write this column, I am slated to meet with my oncologist on March 19, review lab results, and perhaps start a fifth cycle. I say “perhaps” because, while I feel (and hope) Velcade is being effective against my myeloma, I, like Tom, feel I am whizzing by, arms and legs going like mad, doing my best impersonation of a runaway engine.
Having never taken any drug other than thalidomide, I did not know what to expect with Velcade. I tolerate it well, with little nausea. I have not gotten a rash or any other nasty side effects. Those are all good things.
But 16 weeks into treatment, issues are popping up on the periphery. After an initial burst of renewed physical energy, I am experiencing growing fatigue. I feel more physically fragile. And I am starting to have mild peripheral neuropathy (pain, numbness, and tingling due to nerve damage) in my fingers and palms.
The sensation was faint whispers at first, so much so that I would rub my palms together and think I was just being hypersensitive. Now the tingling has grown to where I have to name it. I find myself squeezing my hands randomly to try to push away the sensation.
This newest development is upsetting. The treatment I underwent in 2005 and 2006, a clinical trial which had me taking 400 mg of thalidomide on a daily basis for weeks on end, left me with a moderate amount of peripheral neuropathy in my feet. It never fully resolved; I have learned to live with it. I’m not a runner or a dancer, so the impairment to my feet, while annoying, is tolerable.
But my hands are different. I write my column drafts longhand, I carry on a lot of personal correspondence longhand, and I spend a lot of the workday with either a pen or a keyboard close at hand. I bake a lot, and baking is a very tactile experience. I use my hands a lot and am reluctant to surrender them to peripheral neuropathy.
There is one thing more nagging at me, as long as I am laying my cards on the table. It is a quiet thing, waiting on the sideline, biding its time. I sense that the treatment, as opposed to the disease itself, is wearing me down. More than one fellow Beacon columnist has pointed out this harsh aspect of myeloma: the treatment extracts its own toll.
And right now, Velcade is extracting its own toll on me. For the first time in a long time, I am acutely conscious of the sense of time running out.
My oncologist and I have a long, close relationship. We respect each other’s opinions and expertise: his as a hematologist, and mine as someone who has lived with myeloma for over eight years. I am ready to talk, and ready to listen, and think it is time to talk and listen.
After Tom’s crash, he was escorted home to be sewn up, with a “good-natured Irishman, trundling ‘that divil of a whirligig,’ as he disrespectfully called the idolized velocipede.”
I am riding my own “divil of a whirligig” for the present. Velcade is my velocipede and it is shaking me to the bone.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Hi April, Thanks for sharing your story...the 'velocipede' is an awesome metaphor! Hopefully the Velcade will work well and you won't need to be on it for too long. Sounds like you are getting the latest way of administering it...subQ and just once a week. I had four cycles (I think) plus dex for my induction chemo...that was disconcerting too...I think that the Dex was the culprit for how I felt really out of reality for awhile.
I kept my hands and feet moving a lot during that time...walked, did a lot of needlework, practised piano...maybe that helped since the neuropathy has faded since then...just a slight tingling in the feet ever since that time! I still do a lot of work with my hands!
Hope that your test results were good too! Take good care of yourself!
April
Thanks for the update and insight into subcutaneous Velcade. My only treatment so far was VMP, Velcade, Melphalan and Prednisone. I too started to develop peripheral neuropathy after about 6 cycles. However I found a suggested treatment on the University of California at San Francisco website. It suggested Vitamin B6 and Alpha Lipoic Acid. I take it morning and night, and it reduces the neuropathy to almost non existent.
It's good to hear that you have lived with mm for eight years. For me it is 2 years so far and hoping for many more.
Don't fall of your velocipede, just try riding it slower and enjoy each passing day
Eric
Loved the image... even had aliteration in it. Well done!
Per your symptoms: yes, Velcade is the culprit for the neuropathy. Sub-Q is supposed to ameliorate that to a great degree. I had 4 cycles of it injected intravenously. The neuropathy was bad, and is still not gone in the feet. Two minor remedies: V8 or tomato juice are said to work, and I don't doubt it, as it seems (anecdotally) to make a difference for me. Also, tactile stimulation (walking on wet sand in bare feet, for instance), is said to help... but I don't know.
Your hyper symptoms are almost certainly dex-related. and they will go away after you come down off the cycles, tho it may take a few months. The fatigue is not one I have been able to sort. Some say Dex, others Velcade... my guess is that it's a response to continuously fighting the toxins, whatever they are. I've been 'clean' for about a year and a half, and I am STILL climbing out of that fatigue pit. They said 3-6 months post-ASCT? Yeah, right. Whatever.
I guess the question you have to ask yourself (and your onc): what are the realistic options? For me here in Ontario, they were (and probably still are) relatively more limited than those of you in the US, but nonetheless, we cannot have it all. You almost certainly will be paying some sort of price for fighting cancer with poison... we are never clear winners in that fight, are we?
Thank you for the suggestions and the comments! Alpha Lipoic Acid has been suggested before; I have not tried it. I have tried B-6 (back when I was first diagnosed and taking huge doses of Thalidomide) and it didn't begin to dent it, unfortunately.
As a P.S. to this column, which I wrote two weeks ago, I saw my oncologist today and we reviewed lab results. Overall, the best labs I have seen in 3+ years, with a substantial drop in my IgG levels (almost within normal range) and no para proteins in my urinalysis for the first time in a long time. In short, we are celebrating! We did discuss the symptoms: the PN, the fatigue, and the feeling I call the "feel like I am getting sick but not getting sick" that starts several days after chemo and goes away as soon as I have chemo. I had tracked the symptoms for the last 4 cycles; my oncologist speculates that the "sick" feeling is not chemo, is not steroid, is not myeloma, but may well be my adrenal gland is just beat up from cancer and treatment, and not firing on all four cylinders. So we are tweaking the regimen to spread the Decadron over the week to see if that will boost the adrenal gland. I started the 5th cycle of Velcade today and will review the regimen tweak in four weeks. Stay tuned!
Aloha April,
Thank-you so much for sharing your experience. I am in my 2nd week of my first cycle of the dex, velcade, and revlimid. The drugs are definately a nrew experience! I am hoping for a good 8 years and will trade some difficulties for the time to raise my boys. I am very concerned, however, about where to draw the line on treatment. My cancer levels are high, but my symptoms are zero.
I am already rolling the dice by taking this necessary poison, but might it be wise to play with the dosage and frequencies? If our cancer load goes down maybe we should lower the dosages until it starts going back up? Is this playing russian roullette by increasing our immunity to the drugs? I would love to know your and your oncologist's opinions about this.
Please try to stay positive and enjoy every day!
Aloha
Tom
April, I can also recommend L-carnitine for mild peripheral neuropathy. I´ve used it for more than a year, together with B-vitamins, and it is helping a lot but not taking it away completely. It took 1-2 weeks before I noticed an improvement. Might be worth trying.
All the best from Åsa
Wonderful article, April. You're a gifted writer, and I think many patients starting out on Velcade will appreciate your insights. And congratulations on the latest lab results -- that's great!
I do have one question, and it concerns what your doctor said about your adrenal glands. From what I've heard in the past, I would have thought any issue with the adrenal glands would be related to the dex you've been receiving. But what you wrote suggests it also could be due to the myeloma. Do you (or anyone else here) have any additional information on that? I've never heard of myeloma "attacking" (or stressing) the adrenal glands.
Thanks!
I had no idea anything was wrong when I was diagnosed with multiple myeloma. I had no symptoms, to my knowledge. I was dealing with high blood pressure and shingles but that had been going on for a long time.
I, too, feel like the treatment has caused the problem. I would have been better off just letting it be. And going on about my business. Now that I am into treatment, I don't know quite which way to go.
Thanks for the column, April. Add my name to the chorus of those who have complimented you on your writing.
Louise - I'm sorry to hear that you feel your treatment is causing you problems. I think, though, that if you read the stories of other myeloma patients, you'll find that your experience is very common. Many people discover their myeloma through routine blood tests and haven't really noticed any significant symptoms. It's similar to the many cases of breast cancer that never caused any symptoms, but get discovered by a mammogram or self examination.
In the case of both cancers, however, just because you don't have any symptoms doesn't mean it's a good idea to leave the cancer untreated. Would you leave a small cancerous lump in your breast untreated just because it isn't creating any problems for you right now?
As my MM specialist likes to say, "There's no free lunch!"
Sadly, I believe he's right...we will pay a price for our treatments, i.e., side effects from the toxicity. I don't know of anyone who hasn't had at least one annoying, or even partially disabling, side effect.
Best,
Steve
I was also treated with intravenous Velcade and dexamethasone in 2010 in six cycles, which I received twice a week for two weeks and then one week off. I believe the fatigue is brought on as a drug side effect. My closest friend, also a cancer survivor, told me many times the benefits from the dex far outweighed the negative side effects, as it stimulated appetite and increased activity levels. As hindsight, I now completely agree with her. During treatment, I didn't like the dex and the fluid retention it brought on. During the last weeks of treatment, I also felt fragile, mentally slow. I walked outside in the sunshine at a comfortable pace for exercise and because I enjoy being outdoors.
I have received extremely good results from the Velcade treatments. My bone marrow biopsy went down by 80 percent. Recent research discloses that patients treated with Velcade are receiving longer remission periods than previous regimens (read this on the Beacon). I only experienced very mild PN during treatment. I encourage anyone to consult with their doctor about difficulties. Do what you can (I considered it must do) to get through treatment. Yes, it was hard work, but I feel I have received great benefits afterward.
Note to Louise Duncan: No, you are not better off letting it be. The disease would quietly progress, and you would have serious consequences (organ or bone damage). Be tough but be kind to yourself and get through the treatment. It takes time to get to where I am, but you can get there too!
It sounds like the Velcade-Dex is working for you. I was on weekly VRD but once my myeloma had been put into a remissive state, my oncologist started backing down the frequency and amounts. I have been on Velcade going on 4 years but it is now subQ once every 2 weeks. The Revlimid was dropped and the Dex is now down to 12 mg (3 4mg pills) once every 2 weeks. This is a maintenance dosage and the level is not an exact science as everyone is different. However, with that type of dosing the side effects are much more limited and I do not experience fatigue like when I was on 40 mg of dex each week. (Dex has me on a 2 day high followed by a crash due to insomnia and elevated energy during the 2 day high).
Perhaps after this next cycle you can be put on a less frequent maintenance protocal that will help in alleviating your side effects. Worth a discussion with your oncologist.
Ron
Hello April. If you are experiencing a worsening of PN, then I recommend that you seriously talk to your doctor about it. Having experienced Grade 4 PN, myself, i can teel you that you never want to go through that pain and agony. Perhaps SubQ would work better for you. Good Luck and God Bless.
Hello April and fellow Ohioan (Xenia),
I have been doing chemo drugs for about 3 years; diagnosed end of April 2010; had 9 months of after transplant, but it didn't work. My first therapy was intravenus velcade, cytoxin once a week, dex for 4 days for 3 weeks in one cycle. Did four cycle, went to 0 plasma cells after being above 70 percent. My PN was bad but wasn't as noticeable because I was on vicodin and neurotin for a seriuosly messed up C2 from a tumor.
When my counts started going back up the doc put me on Revlimid matainance to try and keep them down. After a few months it stated causing me real problems with my legs, I have suffered with mild restless leg syndrome for most of my life and the Revlimid made it alot worse over the year and 2 months I was on it. It also caused severe leg cramping and my feet tingle like they are going into first to second stage frostbite; and I know what that kind of frostbite feels like; stupid kid I don't feel pain like most people. Potassium helps some with the cramps, can't eat bananas anymore since my transplant they make me sick to my stomach. I just stretch my legs when I feel one coming. The doc also decided try the Neurontin again to see if that would help and it did.
Now I am 3 weeks into my fourth month of full chemo; subQ velcade, cytoxin, and dex once a week; but the doc had to up the Neurontin to twice a day. It works alot better for me this way, especially at night. This has another perk for women if you are menopausal it helps tone down the sweats alot. I am 55 years old and the MM threw me straight into full menopause without any warning. The jitters and hyper you feel is the dex, with the 1 dose I bounce of the wall for about 30 to 36 hrs. then crash, but still don't sleep well for another day. Its a lot better this time than the first. Also I have to monitor my blood sugar on dex day and for 2 days afterwards because it really can elevate my blood sugar. The first time I did dex it turned me into a diabetic for a while, went back to having low to normal blood sugar a few months later.
I try to stay active do all the yard work, just finished renovating my kitchen and laundry room, and am now helping my oldest son and his wife renovate the house she got when her grandmother past away. She is expecting twins and has an 11 yr old son who keeps me on my toes. I am happy and have alot to look foward to. Lifes good.
Dee
Hi April,
I am so glad that your latest lab results are the best they have been for years. The MM journey is certainly a roller coaster. After I stopped taking Velcade my PN (from the Velcade) seemed to dissapear but not the PN I had previously from Thalidomide.
Keep well,
Libby