ME vs. MM: Two Years Of Chemo - What Has It Done To Me?
I recently had my first quarterly checkup since completing my treatment earlier this year. My lab results showed that everything (red and white blood cell counts, immunoglobulins, etc.) was back in the normal range, or very close to it, and there was no sign of M-proteins. The doctor indicated I looked to be in great shape and wished he were as fit as I am.
As a side note, when people say they wish they were as fit as I am, I can't help but think to myself that I would rather be in their shoes if it meant I could get rid of multiple myeloma, since I can always do something about getting in shape.
So if I'm in remission and doing so well, why don't I feel that great?
Since completing my treatment, I've had a number of things bothering me, including joint stiffness and pain, upper rib cage discomfort, numbness in my neck and left arm, muscle pains in my calves, limited range of motion, and somewhat poorer vision.
All of these have shown up since I stopped treatment, with the exception of the rib cage discomfort, which occurred several times during my treatment but is more consistent now. I also think the neck and arm numbness may be related to wrenching my neck last fall, but it wasn't this evident while I was on treatment (perhaps due to the steroids). Furthermore, of all the issues, this is the only one that's been getting better.
What I can't figure out is whether these issues are a result of the cancer, my cancer treatment, old age, or something else?
My initial worry was whether they were cancer related. As many people in remission will indicate, every little ache and pain can make you wonder if the cancer is coming back. However, since I'm so recently in remission, and given the results of my first checkup, I'm pretty sure it's not the cancer.
Instead, I am concerned whether these could be the long-term effects of infusing my body with poisonous drugs for two years, and if so, whether they are permanent or will go away over time. Or conversely, at age 55, are these just the results of getting older and I would have felt this way regardless?
I discussed these issues with my oncologist since I have read that some of them are similar to the symptoms of steroid withdrawal. He indicated that some patients have experienced similar issues, but they generally clear up within a two to three months and I should not be experiencing them this long after treatment.
I also asked whether the calcium supplements I've been taking could contribute to my joint pain. While it can happen on occasion, he did not think this was the case. We nevertheless decided to discontinue the supplements on the off chance it could be part of the problem.
Finally, to cover another possibility, I also had tests done for rheumatoid arthritis. However, these came back negative, so we're at a bit of a loss as to a cause. Since this is getting outside the realm of my oncologist’s field of expertise, I'll be looking into it further with my primary care physician.
My personal opinion is that much of this is still related to the treatment I was on. Part of it may be the effects of withdrawal, and some may be damage done as a result of the drugs I was on. Therefore, I'm planning on trying to purge my system of the drugs I was taking, and have been looking into methods for detoxing my system.
I've also been researching a lot about nutrition, and plan to change my diet to promote better cleansing of my system. I'll probably write more about this in a future column.
While this column has been about what two years of chemo has done to me, I would be remiss to ignore what has it done for me. I have reached remission, and my few issues and side effects are not all that significant, particularly compared to what a lot of patients go through. The bottom line is I'm actually doing quite well and hopefully the issues I am experiencing will subside with time.
Peace, and live for a cure.
Kevin Jones 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
Ah Kevin you are but a youngster. I am almost 20 year your senior and ask myself these questions every day. I have been off everything for three months and I have been wracked by insomnia and fatigue. Is this age or myeloma related? This is not my oncologist's specialty so he recommends soothing music and to see my GP. Should I fight it or is it my "new Normal". I agree with you that we must do everything possible to keep the poisons out of our bodies as long as possible and at the lowest doses possible. Thanks for sharing.
Hi Kevin, I have now been off of chemo drugs for more than two years. I experienced some of the same symptoms, numbness in patchiness especially in the legs; aches and pains, etc. I am much better now...part of what I have done is just to accept that I cannot be as active (jogging, lifting etc.) as I was five years ago. I am still quite active though...but the bone injuries made me have to readjust what I can do. But also, there were lingering side effects of the strong chemo drugs I took.
Well, I guess you can visit your other doctors too, including an ophthalmologist, family doctor etc. for these issues. Sometimes 'dex' gives people cataracts, unfortunately, but there is surgery available for that.
I try to keep exercising daily and eating a good diet since I also hope to stay in remission, although I realize that probably I don't have as much control over my future health as I would like to have! At least the good lifestyle lessens one's chances of heart disease and other serious 'non cancer' type of diseases.
Hi Kevin,
I have been off chemo drugs for about 2 years - in August - and I, too have had various pains and problems on and off in that time. I found that lack of sleep, stress (I have a pretty stressful full time job) and too many carbs will make me hurt, cause memory issues, etc.
I gave up going to "Western" doctors for the pain and stiffness issues and now go to a Chinese medicine/Acupuncture doctor. I have been going since February and it has made a huge difference in my endurance and my pain. I don't get tired as easily and various aches and pains and tingles are not as frequent, even when I don't mind my diet, stress and sleep like I "should".
I too have eye issues, but I am contributing some of that to being 57.
I work very hard on keeping a positive, realistic attitude and enjoying the journey...
Kevin:
I think the bone pains are the result of the damage they received from the myeloma. I have been chemo free for about 1.3 years and am taking no pain meds. I do get rib pain if I do a lot of standing. Working in the garden, walking, renovating the laundry room all result in feeling less pain, so I think exercise is good for the bones.
I am doing and FIR sauna every day at 130 degrees F for 40-60 minutes and after this there is significantly reduced pain. It is also a great detox. Since I started this about 7 months ago, no colds, flu, coughs etc, so it seems to be doing double or triple duty.
Take care and keep writing
Hi Kevin,
You have brought home some of the same issues that I've been thinking over since my treatment began. I'm 57 and I have just discontinued Revlimid as a maintenance chemo this last November after initial treatment an ASCT. I have also had vision issues since beginning my initial chemo and they have not improved. I no longer wear my glasses since they may work for a while, than my vision seems to shift. So perhaps the chemo does affect the eyes along with the aging process. The too have the other symptoms you list plus my brain has never been the same.
I have found that acupuncture and massage help along with stretching and exercise.
I have been attempting to fully accept that this is the new normal, for now.
I look forward to your next column.
As regards your vision problems, have you asked your oncologist if this is due to steriod medication, which I assume you are or may have taken? My husband has been on and off dexamathasone (Decadron) for 4 years for myeloma treatment, and in the past year developed cataracts. He has had successful cataract surgery for both eyes to correct the condition. If I am not mistaken, it is rather common knowledge that steroids can cause early onset cataracts, which is something I confirmed with my opthamologist this week. YOu can also
take a look at Dr. B. Durie's blog on the IMF website where he addresses this issue.
I think it really takes way longer for the drugs to leave our system than the doctors say. I've been off treatment 9 months, have lots of little aches, pains, rib pain. But in the last month I seem to be getting some improvement. Still hoping to stay in VGPR but like everyone else , it's a waiting game.
Hi, Kevin.
I am wo years free of chemo this coming September (a summer of Velcade/Dex, and a dose of Melphalan prior to stem cell transplant)gh... and I am still recovering. Many of the same symptoms you describe (numbness, achy joints, eye issues), but they are slowly clearing up, and my energy levels are starting to come up again too. I can do about 4 hours of pretty intense physical activity (landscaping, say) now, where a year ago it was about 30 minutes, tops.
And my numbers are still improving! Just had a 6-month, and the bad numbers are down from last time. Just a bit... but I'll take it! My VG partial is getting better all the time... happy happy.
So I guess my point is that, yes, all those toxins are going to have a strong negative effect and where the damage isn't permanent (some was for me, like heart damage) there is recovery... but it is slow. And your idea about diet/nutrition is totally central to that process. I practically live on whole-grains, leafy greens, and tomatoes these days, and I think it is making a difference.
I consider myself very blessed nowadays. I hope and pray you do too, or get there soon!
Yep....I hear ya Kevin....'bout the only thing I can tell ya is what my hem/onc is fond of saying to his patients..."There just aren't any free lunches when it comes to cancer treatment."
Balancing QOL issues with treatment efficacy is still a guessing game at best...but who knows, maybe that will be changin' for all of us before too long?
Best,
Steve
Ah Gary,
You old guy. Interestingly enough, the insomnia and fatigue I had while on treatment are gone. More than anything, it just seems like my muscles and bones, and particularly my joints have degraded over the two years of treatment. I hope you find relief.
Nancy,
It's good to hear (and encouraging) that some of your symptoms have lessened with time. I also hear you're planning a column on nutrition – I'm looking forward to reading it.
Ranetta,
The connection to sleep and stress are good points. I also have a stressful job at times and also don't always get as much sleep as I should. The use of acupuncture is also intriguing. Thanks.
Eric,
I'm not sure whether my bone issues are from the myeloma since I was not symptomatic in that area when diagnosed, but I suppose there could have been some at a low level. I agree that exercise helps - it takes me about 15-20 minutes of stretching each morning to loosen up. What is a FIR sauna?
Rebecca,
I had some vision issues during treatment too, but from what I had read, expected my vision to improve once I stopped treatment - hasn't been the case. This is one that's hard to decide whether it's due to treatment or age, since at our age vision tends to get worse anyway. Also interesting to see that you (as well as Ranetta above) recommend acupuncture.
Gratia,
I have not specifically discussed the vision issues with my oncologist. I am aware of the connection with cataracts - fortunately I have not had that issue. I'm sorry to hear your husband has, but glad the surgery was successful. Thanks for the reference, I'll look into it.
Christina,
I agree with you that it could take much longer for some of these drugs to filter out. That's why I'm looking into ways to purge/detox my system and try and help the process along. I'm glad you're starting to see some improvement - hopefully that bodes well for me.
Snip,
Always good to hear from you. It's encouraging how many others have had similar issues (though I'm sorry that they have had them) and are experiencing improvements well after remission. I'm happy to hear your labs continue to improve - particularly after almost two years.
Steve,
You're probably right, there probably aren't any free lunches considering the potency of the drugs that are pumped into us. I wonder if there's at least a really cheap lunch. I think the QOL issue is becoming more and more important and we'll continue to see drugs being designed to consider QOL in addition to the effect it has on the disease.
I have been at this for nearly 10 years. I was 43 at initial diagnosis. I have had 3 stem cell transplants and am now on Revlimid 21 days each month. I had so many bad side effects from the steroids, it's hard to even remember all of them. The one I remember most was about 4 hours after I took them I had zero tolerance for annoying people. I realized this the first time when I was in Walmart and just wanted to run over people with my cart when they blocked the aisle. Of course I had the puffy face etc. I still have rib pain occasionally and other bone pain. I have had one hip replaced and the other shored up before it could break, so I get aches there too. My doc has said that the original bone injury will still be felt just like when you break a bone and it heals. I broke my leg years ago and I still feel aches in that bone from time to time, though it was not caused by MM (actually the leg break was caused by my stupidity). I haven't tried acupuncture, but I get massages regularly. I can't speak to the insomnia as I have always been a night owl.
I have been in remission for 4 years but have never been off the drugs. They have been cut back but never stopped. I am not having any lasting pains or other side effects other than the temporary 48 hour dance with Dex. The Dex is now down to 12 mg every 2 weeks which I take at the same time as I get a Velcade shot.
The biggest problem it that my bone marrow is not healthy. I still am border line with anemia. My WBC tends to always be slightly below nomral and my HGB and HCT bounce between just over the bottom of normal to just under. My red cells are also larger than normal. I still have an weak immune system as I must take IVIG once a month. I feel fine and on Satuday did a 70 mile bike ride and followed that up with 25 mile ride on Sunday. But there is no hiding the fact that although I feel well, I am not well.
The FLC stays normal and that is good but the bone marrow is not normal as my blood tests show. Remission is not cure as my blood tests constantly remind me.
Ron
Renee,
Sounds like you've had a tough go of it. It's particularly interesting that your leg bothers you, even though you broke it before you had MM. I had a lot more issues with side effects when I was still on chemo, but had hoped everything would go away when I reached remission and stopped the drugs.
Ron,
Given the issues you still have, it's amazing the length of the rides you are able to take. My rides are only about 30-40 miles, and that's with my counts all back to normal (my white cell counts, like yours, still seem to hover around the lower range for normal). Does the Velcade contribute to lower red cell counts, or do you think this is more likely a permanent result of long term chemo - this is one of the reasons I decided against Revlimid maintenance since it could lead to similar long term effects.
They took me off Revlimid a year ago and my counts came up a little. Supposedly the Velcade is not as hard on the bone marrow. I don't feel fatigued but wonder why the red cells are larger than normal. They have always been that way since I started treatment. (Probably before hand and is probably caused by MM). I am in remisive state but have low level MM that is being controlled. I have not had a bone marrow biopsey since back in 2009 as my MM is tracked through the FLC. I have never had a M spike but my tests always show a faint IGG Kappa band that cannot be measured.
I will be doing a 12 hour two man team time trial race in Waco Texas on July 13. It will likely hit over 100 degrees as July in Texs is hot. We will be alternating laps on a 24 mile course that goes by the Crawford Ranch of former President George Bush. My partner, Andy is an English gent of 37 years. The race starts at 7 am and goes to 7pm. We did the same thing together a couple of weeks ago in the Palo Dura Canyon in West Texas. I will also do the Texas Time Trials in Sept and will team with Andy and his father, who is coming over from Britain. We will be doing a 24 hour time trial on a hilly 26 mile course. We did the same thing last year and it was a blast! Even though Andy is younger he has 25 lbs on me and so we are about the same in speed and endurance.
Ron
Kevin, I am three years into the progression from MGUS to MM. I have not had any chemo treatments yet, but I have the same symptoms you mention so maybe it is possible you would have developed them with age anyway. Either way pain is pain and I hope you find some relief soon!