Pat’s Place: Five Years Of Chemotherapy Take Their Toll
Except for three months following my stem cell transplant, I have continuously been on some type of chemotherapy for my multiple myeloma for over five years. The relentless onslaught has caused a wide variety of side effects, some serious and others inconvenient.
I have been on Revlimid (lenalidomide) since soon after my diagnosis. It depresses my white blood cell counts to the point that I have experienced chronic neutropenia a number of times. It has also aggravated a form of peripheral neuropathy (tingling in my lower extremities that slowly progressed to occasional pain and loss of sensation) that started years before I was even diagnosed with myeloma.
I didn’t start receiving Velcade (bortezomib) infusions until two years or so ago. This resulted in peripheral neuropathy symptoms of a different hue, causing numbness in my legs, arms, and other unexpected locations.
Switching last year to subcutaneous injections of Velcade helped a lot. However, long-term Velcade use is beginning to affect my ability to walk.
Most every myeloma patient I talk to has had issues with dexamethasone (Decadron). But best I can tell, my on-again, off-again use of dex hasn’t left much of a mark – or has it? Could it be contributing to the extreme spikes in my blood sugar that cause me to retain four or five pounds of water if I even look at a piece of chocolate cake?
In addition, my toenails and fingernails have become brittle, breaking from the slightest bump or snag. My fingernails are visibly thinner and have lost their shape, becoming flat or even concave.
My hair has also become brittle, falling out much more quickly than one would expect – even at my age. What’s left has become thin and lifeless, while at the same time sticking together in a way no comb could possibly cut through.
A few weeks back, my wife, Pattie, reminded me that our hair and nails give us a portal through which we can assess our body’s health. If true, my body is exhibiting clear-cut signs of toxic stress.
At first glance, these are things someone on the street may not notice. Heck, I often hear, “You don’t look sick,” and “We think you look great!” As opposed to what, I wonder? Dead man walking?
Kidding aside, I can spin this either way. Yes, I am able to live a relatively normal life. Many people who aren’t living with cancer fight their way through medical inconveniences each and every day. And, of course, I’m grateful to even be here.
But whether it is Revlimid, Velcade, or dexamethasone, there is no question that being exposed to these drugs day-in and day-out is taking their toll on my overall health.
So why don’t I look like an extra in one of this season’s new zombie thrillers?
Well, Pattie and my local stylist, Linda, helped me find the right combination of shampoo and conditioner. Good bye, Head & Shoulders! Using the wrong shampoo leaves my hair as hard as a board.
I would like to report that calcium supplements have helped my nails. But they haven’t. However, keeping my nails extra short helps prevent them from breaking when I merely cough or sneeze.
I exercise everyday, eat lots of fresh vegetables, and take minimum doses of a lot of different vitamins and mineral supplements. Not enough to harm, but hopefully enough to help prevent any serious deficiencies. I also make sure to eat enough protein, too. I have even tried eating calf liver three times a week, hoping that may help reinvigorate my bone marrow.
I know I don’t get enough sleep. Too wound-up with columns to write and places to see. But I’m trying to meditate and get more rest.
I dress casually, since I work at home. But I still try to be well groomed, stay positive, and remain as friendly as my fragile body will allow.
It's all part of my plan, so I can continue to hear: “You look good for an old, sick, brittle-haired, dying guy!”
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Myeloma Treatments And Tolerability
- Myeloma On The High Plains: To The Saints In Our Lives
- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Myeloma, Party Of Two: Zero Point Seven
You nailed it, my friend (no pun intended). Yes, we're all glad to be alive, but there's a cost to this ongoing treatment.
Hi Pat,
Thanks for being your usual straightforward and accessible self.
I was trying to explain to someone just yesteday how that although MM can be treated and allow the patient to "enjoy" progression free intervals, there is a price to pay for making that happen. Said simply, the treatments used to "control" MM are just too toxic...period. Eventually a toll is taken...part MM and part toxicites...but the toll will always have its way. Until then, we all can choose how we will spend the time we have left...through good days and bad...we can choose.
Steve
Thanks Pat, You are such a trooper, helping others through thick and thin! Sorry that the meds have taken a toll too. Have you tried eating foods with gelatin for your nail health? My toenails got so unmanageable that I have had to go for pedicures, since I couldn't cut through the thick nails. I think it had to do with the chemotherapy drugs I took. Take good care of yourself too!
Hi Pat, nice column. Have you given any thought to substituting carfilzomib for Velcade? It may lessen your PN and other related issues. I don't think anyone in my CRD trial had a major issue with PN induced by carfilzomib. It is clearly very effective and in the same class of drug as bortezomib. Terry L.
Pat, your columns always put a smile on my face. It's the way you descibe things, that I can relate to and frankness with which most MM patients don't find amusing. Glad you have always keep your sense of humor. I would just like to point out one symptom that you did not mention - Fatigue. Ever since my ASCT, I ahve not been the same person. Always very tired and feeling a disconnect from reality. I take supplements as well : Multi Vitamins, (Did you know that if you are taking Zometa, it will lower your calcium levels? As a matter of fact, people who come to the hospital with hypercalcimea, recieve Zometa). Also I take some natural anti-myeloma supplements : Curcumin, Betulin and Coriolus Versicolor Mushroom Extract. And like you, I only take these supplements every third day, because even too much of a good thing could be bad. I also take Fish Oil and Vitamin D. Life is not the same as it once was and it is a struggle to keep daily routines in motion. Some days I just ca't function because of the fatigue. And like you I hear people all the time telling me I look fine and don't seem sick. I told a close friend of mine that if we could trade our health for just one day, I guarantee that he would head for the ER before the day was up. I think people are trying to be nice when they say those things to us and I appreciate their kindness, but they have no idea what people like us have to endure. Anyway, I am rambling and will end this tirade. Keep your columns coming, because they brighten my day because of your honestity. God Bless, Geo.
Thanks, all. And yes, my myeloma doc recommended I try Kyprolis. Arguments for and against. I think I want to watch my M-spike and see how fast PN symptoms intensify first. I'm doing better after yesterday's sub-q infusion than I did last week. Keeping my fingers crossed!
Hey, George. They don't disclose the risk of long-term side effects post SCT, do they?
My doctor has started me on revlimid/krypolis/dex treatment, and I can say that my MM has actually started to respond to treatment, where as with velcade/dex, and revlimid/dex was not cutting it. I am feeling much better, am not having the low white blood cell counts and have to take neupegen shots, very little fatigue. This treatment is definitely something that has made life more manageable. Am on second cycle, and it has made a world of difference. Worth the wait on this awesome drug!
Pat
For what it is worth, here is my regimen everyday.
4-6 gms Vit C buffered
2 teaspoon go greens+ two times a day
1/2 teaspoon CALM (ionic magnesium citrate), two times per day
2 Vit B6, 2 R+Lipoic acid, twice per day for neuropathy
1 Vit B complex
3 Vit E8 ( full spectrum E vitamin)
4000 iu Vit D3
2 Biosil, twice daily - for hair nails bones
2 Vit B12
1 teaspoon cheated iron
2 teaspoons flor essence herbal tea
1 currcumin, twice per day
2 dandelion root capsules, twice per day
10 drops milk thistle (A. Vogel), twice per day
I have kept up this regimen for two years since diagnosed with MM.
Today my M protein is essentially zero and I have not used pain killers for 9 months.
My MM treatment was Velcade, melphalan, and prednisone once per week for a little less than a year.
This regimen developed from input from the Myeloma Beacon, a 22 year survivor of MM, and an MD and naturopath I see every 2 months or so.
I do not know if this will work for you, but I feel it has for me.
Keep writing your articles, because they are strengthening to me and many others
Eric
Hi Pat,
Thank you very much for your column. I was diagnosed with MM 2 years ago February and your column was one of the first I subscribed to. It really helped my outlook. I was on Revlimid and Dex. from Feb. to August 2011. I developed a secondary cancer - Carcinoid tumor - and haven't been on any chemo drugs since then. I get an infusion of Aridia every 3 months.
I have fought fatigue and lack of endurance since I was diagnosed and I have tried many high quality supplement combinations but nothing helped for more than a couple of months. I decided to focus on improving my nutrient absorption and added "green smoothies" with a goat milk protein powder and fermented products. I drink 2 or 3 small ones (8 to 10 oz.) everyday. This has helped more than anything. It is easy on my stomach and my "carb" cravings are gone. I still had a sensitive stomach after chemo drugs, surgery and pain meds and had to watch what I ate. This regimen has really made life much easier. I have more energy, get more exercise, so I sleep better...win, win...
Again, thank you very much for your column...
Aloha Pat,
I am recently diagnosed and have yet to start treatment. I am 50 years old and pretty healthy right now. My light-chain levels are now at a point where treatment is recommended, but I don't want to make myself sick with my treatment. Your experience is exactly what I dread.
In hindsight would you do anything different? I would love to hear others answer to this question as well.
Thank-you for writing your article.
Aloha
Tom
Great article.
I'm so excited that "Bad Boy's" treatment is starting to work! Wonderful!
Eric, congratulations on your naturopathic success! Fascinating. And again, so glad your myeloma is sleeping peacefully!
You, too, Ranatta! Your smoothie idea sounds so soothing.
Thomas, I have written before about how I'm much tougher than I ever dreamed I could be--and that things aren't as bad as they seem. I understand how you feel. But you do learn to manage. Heck, you could have diabetes or any number of other serious, chronic ailments or types of cancer. Instead, WELCOME TO OUR MULTIPLE MYELOMA CLUB! Sorry you didn't have a choice whether to join or not. But new drugs seem to have fewer side effects. That's one reason the FDA is approving them. I watched a five year survivor suffering when I first joined a support group after I was diagnosed. Neuropathy so severe from taking years of thalidomide he could barely walk. I'm guessing it tore him up inside. I dreaded a future like that. But you know what? My experience has been much better. And yours very well could and should be better than mine!
Pat, I have been reading your articles for the past three and a half years. You are always informed and so positive. As the wife of a mm patient in our 50's, with two teenage children, I was surprised the way you ended this article. It cut right to the heart. We are trying everyday to be positive, to look forward to the wonderful years ahead, weddings, grandchildren.... We know that mm is incurable, but we never think of my husband as a "dying guy". We know this is a marathon and there will be bumps along the way, but try to remain hopeful. It's not always easy and I just wanted to say that that line has stuck with me and caused more than a few tears.
I'm so glad I can help! My wife is "myelomaed out" and doesn't do a lot with me anymore. I go to my own appointments and pretty much take care of myself. She doesn't go to support group meetings anymore. But I know she's there for me, just like you are for your husband. I'm glad you aren't "burned-out" like that. But I think my work contributes to it. Myeloma 24/7.
Hope you have a great 2013!
Great article. This is an article all newly diagnosed patients should read when choosing a continuos therapy route. The Docs never seem to discuss this when telling everyone how "tolerable" the side effects of the "novel" agents are. I think it is interesting that your column was run within a few days of the column about the rate of infection in myeloma patients. Knowing the side effects of Revlimid, DEX, Velcade and carfilzomib, it would not surprise me if this becomes more of a problem as we go forward and more patients are on continuos therapy.
I could never take the calcium supplements my doctors want me too. Instead I take a Cal/Mag Vitamin D pill (Syso brand) and it does help the nails!
Good suggestion. I should try different supplements. I do take a calcium/magnesium/D supplement now. Bet dropping chemo would help more!
Great column. Your remarks reminded me of a family event I attended 5-and-a-half years ago after my chemo but before my bone marrow transplant. Everyone told me how wonderful I looked and how great it was that I showed up. When I see pictures taken that night, I looked like someone out of a zombie movie... bloated from steroids, dark circles around my eyes, creepy looking, really ... smiling and posing for pics in my wheelchair (a new mobility mode thanks to a brain tumor). I think what they were trying to say was I looked alive. They expected me to look even worse because they knew what I had been through. I think people view survivors through rose-colored glasses, even if, as you say, the view from this side is different. I do think I am looking better these days. I am still alive. And that's what counts.
EXACTLY, Laura! The bar is set so low for us, right? Maybe we should take advantage and forget grooming and make-up. But I'm guessing we all need to look our best in order not to look like super dead zombies!
Hi Pat,
Reading your articles are like attending an online support group! You make a great point on behalf of all myeloma patients about how you are grateful to be here but at the same time search for quality of life throughout all the side effects of life sustaining medications. While I don't want to sound ungrateful for being alive, I am continually searching for better ways to sustain myself during this difficult treatment. I can only share with you that I am on a rev/dex protocol for the past 22 months.A stem cell transplant preceded that therapy but was not successful as the MM came back 5 months later. Like yourself, my treatment has been continual. Dex is the hardest of all the drugs regarding side effects. High when you take it, low when you crash and the weight gain, don't ask! I am thinking of reducing my dose from 40 mg/week to 20 to see if it will reduce the negative side effects. Wondering if any of your readers have any comments about dex??? and reducing the dosage.
I have a hard time digesting vitamin supplements, so I have taken advantage of my new found interest in food, thanks to dex, to work with menus that help boost the immune system. Everyone is raving about turmeric so I use it on a regular basis along with cumin in order to boost my immune system, reduce inflammation and add a little spice to my cooking. .I search for the turmeric that comes from Madras as it has the highest concentration of curcumin. I have read Dr. Aggarwal's book on Healing Spices and highly recommend its use for helping anyone build health through adding spices/herbs to their diet. I have also found that regularly drinking hot water with ginger and lemon helps reduce nausea and also is a boost to the immune system. I am drinking this daily as a tea during cold/flu season, sometimes adding a piece of turmeric root for an added boost. For your nails - try using coconut oil and rubbing it into your cuticles to increase circulation, then sleep with cotton gloves. Try using a small bit of it on your scalp too, letting it soak in and then shampoo your hair with a gentle shampoo, one that does contain sulphates - sulphates are very hard on your hair. Also, .use unscented coconut oil unless you want to smell like a tropical cocktail or sunscreen. Keep writing, and keep sharing.
Great ideas, Debbi! Incorporating high nutrient foods in our diet is probably far more useful than popping a bunch of hard to swallow and digest horse pills!
Hi pat
just returned home from my quartly restageing. all good news.
the genetically engineered t-cells are replicating themselves and are targeting the blood markers as designed. my last restageing in oct. showed no detection of the markers we were targeting, i at first thought this was a bad thing but my oc explained this was good thing . i am still having low plalet count so i still cant juggle swords. i am still not on any of the maintinance meds and i guess we will just be in a wait and see mode. i hope this treatment will soon move out cl.trial and become available to all if nothing else just to get off the velcdes,revlimids and thamilophides. i know these are lifesavers as i have been through them all but the side effects can be hell on wheels. to all new patients and medium patients and even you long suffering patients on APRIL FOOLS DAY of 2013 iwill be ten years out and in this time i have had two transplants and 3 cl. trials
and to quote a famous admiral who once said "don't give up the ship men as the country only has one". don't give up hope as the answer may come tomorrow.
Thanks for another great article Pat! Ever since my diagnosis in September of 2011, your articles here and around the web have always managed to put a smile on my face. I love that you've kept your sense of humor through it all and are able to share that with the rest of us. THANK YOU!!
To everyone else that has left a comment, again I say THANK YOU! There are no support groups for myeloma here as I live in a rural area. However, you ALL are my support group!!
So glad all of us can help, right readers?