ME vs. MM: Good, Bad, And Indifferent
In my February column, I discussed my decision to forego maintenance therapy and go drug free following the conclusion of my initial treatment. I closed the column with the statement "I have made my decision, and good, bad, or indifferent, I will live with it."
A bold, confident statement and one I still stand behind. However, in the weeks since ending my treatment, it's also one that I think will be easier said than done.
It's difficult not to wonder whether every unexpected ache or pain may be myeloma related, though this would probably be the case regardless of whether I went with maintenance therapy or not.
Perhaps it's more an issue that there are a lot more aches and pains than I expected. I asked about the aches and pains at my most recent appointment and discovered this is actually common for patients coming off the Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron) clinical study that I was part of. In fact, many of the patients have been prescribed pain medication for a short time after treatment.
Evidently, it can take a few months for the drugs to completely flush from your system and during that period your body may still feel effects from them. In addition, the dexamethasone hides a lot of aches and pains during treatment and when it's not taken anymore, things that were being masked during treatment are revealed (it's nice to know the dexamethasone was providing some benefit in exchange for all the negative side effects it caused).
I think this is somewhat analogous to taking anti-inflammatory drugs or muscle relaxers for muscle injuries. The problem is you are not aware that the injury still exists and you're more likely to continue aggravating it without knowing it. I think this may be the case for some of my aches and pains, particularly since I continued to exercise and remain active throughout my treatment.
The most notable effects I seem to be experiencing are discomfort through my rib cage, stiff joints, and a deep ache through my left shoulder and upper arm, much like a pinched nerve.
The rib discomfort is something that I experienced several times during my treatment and that I believe was caused by the drugs I was taking. Hopefully this will subside as the drugs are flushed from my body and I will just need some time for my rib cage to feel better.
The stiff joints and the ache in my shoulder and arm have only shown up since getting off treatment, so I'm not sure what to make of them, though I have had issues with a pinched nerve in my neck and shoulder in the past.
Overall however, I am definitely feeling better than I did throughout my treatment and there has been a noticeable improvement in my energy levels. I have been playing hockey throughout the winter and while on treatment I was generally winded by the third period. Since being off treatment, I have energy to spare by the end of the game. I even competed in a hockey tournament this past weekend, skating three games in two days. Hopefully this will also equate to more energy and endurance during my bike rides (if the weather ever warms up in Michigan).
In addition to worrying about my aches and pains, I also find I am somewhat anxious as I approach my lab tests and appointments, wondering whether everything will be OK even though it hasn't even been two months since getting off my treatment.
I'm hoping this anxiety is mostly indicative of being newly off treatment and needing to get a few quarterly tests under my belt so that I can start feeling confident my response will be sustained.
I was discussing this recently with two cancer patients I met at a conference for emerging cancer treatments. One was a myeloma patient who was still in remission five years after a stem cell transplant, and the other was in remission from ovarian cancer. Both indicated they were always a bit nervous getting their lab results. However, as time went on they found they tended to became more anxious since they both expected to relapse and the longer they went, the greater the possibility that relapse might occur.
I had not considered this and had figured it would be the other way around - that I would settle into a rhythm, get used to it, and over time not think about relapse as much.
I guess I'll just have to wait and see how it goes and hope I can indeed push it to the back of my brain.
For the past two years, I have been processing everything through a 'myeloma filter', but I feel like I'm getting past that, since some days it feels like I don’t even have cancer and I actually think about life five, ten, or even more years in the future.
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 .
Hi Kevin, glad to hear you are doing well. When I finished the main CRD regimen in December, 2012, I felt some back discomfort, etc. Thankfully, the PET CT was normal. I opted for maintenance and I basically live my life in 28 day increments till my next clinic appt. I feel great, so that helps and I don't dwell on MM much.
By the way, I read about Dr. Jakubowiak's Kyoto presentation here and on a blog and apparently almost everyone in your trial has maintained their best response after all of the elapsed time. Have you read that? That would be fantastic. Good luck and thanks for continuing to write your column! Terry L.
Hey Kevin,
I'm right there with you emotionally...I stopped treatement last November after having reached a near CR (non-detectable from SPEP but still detectable at .1 using IFE) after only 3 months of RVD and have not begun maintenance therapy yet, and don't plan to either, as long as my numbers remain stable at .1 or .2. But each month I get a bit more anxious waiting on those numbers than I felt the month before...I suppose that will continue given the relentless nature of MM. Welcome to the new normal many would no doubt say....yeah, well thanks for the welcome but I'd just as soon not stay!
Best,
Steve
Terry L did you achieve remission after your CRD regimen?
What maintenance regimen are you in now?
Hi Kevin, That's great that you are doing so well, but for the aches and pains! You might have to get more medical attention for those, but I know what you mean...it seems minor compared to having cancer treatments. I remember that 'dex' also helped me with pain when I took it...but it had other effects that I wasn't too happy with! Good luck with everything...hope the spring temps arrive soon. People are riding bikes more on the pathways here now too.
Hi since you have been kind enough to give us the benefit of your experiences I thought l would give you a short run down on mine for comparison . l was treated in 2004 for MM with Thalidomide and dex. for 10 months along with Liquid morphine for 2 months , l have never received a stem cell transplant and have received no maintenance therapy at all no pain killers etc. not that at times l couldn't use some but they don't agree with me especially morphine (yikes) so l have decided to just bite the bullet so to speak. l am still getting good labs except my kidneys are showing some evidence of weakening , l have not came thru this unscathed as my spine is 4 inches shorter and gives me no end of problems also my feet are a disaster and l can walk only a limited distance due to both my feet and my back of course my physical conditioning has suffered in this after 9 years of limited activity. lf you could go into the side effects of Dex. l would like to hear what they are as l suspect that the Dex may be the root cause of my foot problem ? best regards N G
Hi Michelle, I got great news at the end of the main CRD treatment at the NIH that my marrow was clean. This was one week before Christmas, so it was wonderful. I realize this can all change so I am just enjoying every day and focusing on feeling normal again.
The regimen also restored all of my blood counts to optimally normal levels. When I started the trial my blood counts were all depressed and out-of-whack...15 different things were abnormal. For example, the first day of the trial last May, my hemoglobin was in the tank at 8.8. Last week, it was 16.8.
I am on 10 mg. Revlimid maintenance for two years without dex (21 days per 28 day cycle).
Hi Kevin, your article struck a chord with me. After initial treatment with CVAD and thalidomide following MM diagnosis in 2005, I haven't had any active treatment (other than with bisphosphonates) since June 2006. However I still get worried about losing remission. I think that if I'd had a stem cell transplant or I were on maintenance treatment I might be more relaxed about things but having had neither I sometimes feel that my run of good luck must end soon.
However, I get really mad at myself for thinking this way, because having been successfully treated for an extremely rare form of skin cancer 20 years ago I spent many years worrying myself silly, peering at any bump or abrasion, thinking that the cancer might have returned. When diagnosed with MM I vowed that if the doctors could set the disease back on its heels I would not waste a minute more of my life worrying unduly about one cancer or another. In practice, however, it's hard to shake off the worry habit.
Reading about your discussion with the cancer patients that you met at conference, I have often wondered whether the risk of losing remission does increase the longer one is in remission. Perhaps it is more akin to tossing a coin where the chance of heads/tails is the same on each coin toss, even if the chance of throwing heads ten times in a row is small. So, today, perhaps my risk of losing remission is the same as it was at the beginning, irrespective of the number of years that have passed ? I would like to think so, but I really don't know.
I wish you all the best for the future and hope that you will continue to enjoy sports and have an active lifestyle for many years to come.
Terry L
Are you finding that any of your blood counts remain low while on the Revlimid maintenance, or have they all recovered to the normal range after the CRD treatment ended?
Yes, I read the information from Dr. J's Kyoto presentation – the big question now is how long the responses will last, hence some of my anxiety when I approach my appointments.
Steve,
I hope you can remain stable for quite a while yet. One of my earlier columns discussed the "new normal" and how I preferred the "old normal". I'm now thinking about it more as the "current normal" since it's a changing landscape and some changes are good, some not.
Michelle,
I realize you were asking Terry about the response and maintenance, but thought I'd add that I was in a different CRD clinical trial than Terry. In the study I was part of, 98% of patients achieved at least a partial response, with 42% achieving stringent complete response (which is what I achieved). Most of the patients decided to go with 10mg Revlimid maintenance therapy like Terry is doing, though I chose not to.
Nancy,
I'm probably going to get my neck/shoulder/arm checked out since that does not appear to be improving. Regarding the bikes, mine is still in the basement on the spinner. We actually have snow on the ground this morning in west Michigan, so it will probably be another week or two until I get it out on the trails.
Nipon,
It's amazing to hear you're still keeping the MM in check after 8-9 years, particularly with only having been treated with Thalidomide and dex. I'm sorry to hear you've had to deal with so much pain though and are now having concerns about your kidneys. Hopefully you can get that under control.
Dorothy,
It's great to hear that you're still in remission 6-7 years after diagnosis (after also surviving skin cancer). Results like yours and Nipon's are what encourage me and give me hope for a sustained response. Did you have a stem cell transplant, or just the CVAD?
I didn't have a transplant, Kevin. My story leading up to remission is a bit unusual. Back in 2005 I was being treated with CVAD as preparation for a stem cell transplant but I developed serious problems which ended the CVAD protocol and prevented the transplant from going ahead. When I'd recovered sufficiently I was treated with thalidomide and dex which brought my paraprotein (M spike) down to a stable 2 gms /litre (or 0.2 gms/dl under the US system). In June 2006 the thalidomide/dex was discontinued. My paraprotein levels remained unchanged until February 2007, when unaccountably they dropped to non detectable levels. They have remained that way from then until now, with no MM treatment since June 2006, other than bisphosphonates.
I have, however, made a lot of changes to my diet and I began taking supplements in December 2006. Whether any of this has contributed to my remission I don't know, but psychologically I like to think that there is something I can do to influence the situation. On the downside, in my case, the physical damage caused by MM has been permanent and there's no way round that. However, I concentrate on doing the things that I am still able to do and on enjoying life, albeit at a much slower and restricted pace than hitherto.
Hi Kevin, after a about four cycles of CRD, all of my blood counts normalized. Since going on the maintenance part of the trial, they have optimally normalized. Apparently, the results of your trial are being played out in the NIH CRD trial for newly diagnosed and the CRD trial for high risk to progress smolderers. The latter results were presented in Atlanta and Kyoto by Dr. Landgren and Dr. Korde. I realize there are going to be bumps in the road in the future, so I am just enjoying feeling like I did years ago before my dx.
Hi Kevin,
I am glad you have achieved a complete response. Even though you are still concerned about a relapse it must feel good to be off drugs, excercising and looking to the future.
The numbers game, waiting for them, worrying about them, I think that most myeloma patients can relate to that. Early on in my journey it was the paraprotein levels I was worried about. Although I am in remission and dont worry about them so much there are other numbers I watch. As I am on a lot of immunosuppressors for the chronic GVHD I breathe a sigh of relief when my numbers tell me my liver and kidneys are stable (not normal but stable).
Dorothy,
It's amazing that your M-Spike dropped like it did and it's great the way you've remained in remission. I am currently researching nutrition and supplements in hopes of making changes that could prolong my response, so if you don't mind sharing, what were the dietary and supplement changes you made?
TerryL,
My white and red cell counts were borderline low during treatment. Red cells are back in the normal range now that I'm off treatment, but white cells are still a bit low. That's why I was interested in what your counts are while still on maintenance.
LibbyC,
Definitely feels good to be off the drugs - will be even better if I get over the aches and pains. Have you found it gets easier dealing with the numbers game as time goes on, or more difficult?
Hi Kevin,
I have found it much easier dealing with the numbers game as time goes on. There are a couple of reasons for this.
I think the donor immune system is well and truly keeping the myeloma under control. If my paraprotein starts to increase again my immunosuppressors will be withdrawn and the beast (donor system) can be released. Then I will go back on the immunosuppressors. So if the numbers do go up I am fairly certain they will go back down.
One of the other reasons is how my body feels, specifically my back. It sounds a bit airy fairy but.... I had 2 years of chemo where my paraprotein levels yoyoed from 67 to 16 g/L. After a couple of months of treatment I knew if my level was over ~30 g/L. I can remember going in and asking whether my level was 30 - it was 29. When they started me on Velcade I could feel it working so I looked forward to seeing what my numbers were going to be. Until it stopped working. I doubt that I would be able to tell the level below 20 g/L. I dont know if anyone else "feels" their myeloma like I have.
Hi Kevin,
I'm happy to provide more info.
I was diagnosed in July 2005 with an M spike of 4.3 gm/dl and a lot of irreversible bone damage. Strangely, the chemo treatment I received in 2005 made my palate hypersensitive to additives in food. I could literally taste the preservatives and additives and I didn't like what I was tasting, so I found myself veering towards a more natural diet, almost through necessity. Eventually “my chemical seeking” taste buds went back to near normal but I've been left with an aversion to processed foods. I eat organic wherever possible, make my own bread (using a bread machine as I'm a lousy baker!) and I also eat a wide variety of the so called cancer fighting/super foods, sometimes in the form of smoothies made with raw veg and fruit blended together. Basically I've taken bits and pieces of information from a variety of sources as opposed to following one particular diet plan, but I would mention the following: Margaret's blog ("Margaret's Corner"); a book called Healing Spices by PhD Bharat B Aggarwal; Dr. Peter J D'Adamo's cancer fighting book (although I haven't gone as far as adopting his blood type diet) - I'm bad at following rules!
As mentioned in my previous post, the MM treatment was successful in reducing my M spike to a stable 0.2gm/dl and so treatment was discontinued in June 2006. In December 2006 I began taking 1 green tea tablet daily (340mg standardised extract). My M spike in Dec 2006 was 0.2 gms/dl, but at my next check up in February 2007 it had dropped to non detectable levels. I continue to be checked quarterly and it seems that all my blood counts are in the normal range (fingers x my check up later this week will confirm this continues to be the case).
In 2008 I added two turmeric tablets per day to my regime (each tablet comprising 500mg standardised extract providing 95% curcumin) and in recent years I've added calcium and vitamin D supplements. (Residual MM bone damage causes me endless problems and here in Scotland we have long dark winters with weak sunlight.)
I should perhaps, mention that if I reach a point where I need further treatment I'll suspend the use of supplements because I wouldn't want to risk having them react with prescribed medication – for example green tea stops velcade from working properly. Also, I should say that whilst I'm hoping that some of the things that I'm doing might be helping to boost my immune system and suppress the development of disease, I have no way of knowing whether this is in fact the case. My experience is purely anecdotal – it could simply be down to good luck.
Apologies for the length of this post, Kevin, but hopefully it fills in the gaps in my story. Once you've completed your own research I'd be interested in knowing your conclusions and whether you've decided to adopt any particular diets or supplements.
Hi Kevin,
Your article really hit home with me too - I had an auto SCT in March of this year and a recent bone marrow biopsy indicates that I am in complete remission. I was very relieved, excited, happy...but as time goes by I find myself frequently anxious, wondering how long it will last. Sort of like walking around with a small cloud over my head. Something new to deal with in this journey we're on that I never really anticipated.
I hope to start running and get back on my bike one day soon. I had to set all of that aside for nearly a full year since I had advanced lesions in my hip joint and pelvis to recover from. I'm doing better day by day, but I can sure relate to the aches and pains. I walk...and then I walk some more - seems to be working as an effective way to slowly get my strength back.
Kevin I probably ought to clarify my statement on having no treatment since 2004 this is true in regards to prescription drugs - how ever there are several things l take that are not prescribed drugs -for one thing l take 5000 lU's of vit. "D" a day originally l started out taking 2000 lU after reading an article in readers digest where they had determined that it was beneficial for cancer patients to take vit. "D" . l also take 500 mg of Resveratrol daily. I drink wine any way so after reading the controversy on this decided that if it wasn't harmful why not. The other thing l am taking is Black Cherry juice for arthritic problems -l have been taking this for over 20 years after seeing a TV program where the head of the arthritis foundation had this older lady explain that it was an old family medical remedy for arthritis and she gave a demonstration on the added flexibility in her fingers after drinking the juice-( l drink a 13 oz glass daily) as you said l find it amazing that l have made it this long with no relapse - my blood tests show that l still have the disease but its activity level is below the thresh hold that my oncologist feels we need to do any thing about it ( my testing is on 4 months rotation). I'm not one to argue with success so I'm going to continue on with my home remedies till hopefully they will come up with a cure for all of us. best regards N.G.
Dorothy,
Thanks very much for the additional information. Much of what you’re doing is very similar to what I've been considering. I am also tending toward taking bits and pieces of different recommendations and tailoring my own approach.
Mark,
I'm glad you're in remission and can hopefully get back to being more active. Sounds like you've had it worse than I have - no doubt the recovery from the SCT is much more difficult than I've had to deal with since I've only had chemo to this point.
Nipon,
I'm also taking some additional vitamins, plus I've added a daily cup of green tea. I hadn't heard about the black cherry juice - I'll have to look into it since a lot of the joint stiffness I have seems similar to arthritis.
Nipon, I'm also a fan of cherries – they're on my list of super foods. See
http://voices.yahoo.com/five-cancer-fighting-fruits-3000045.html?cat=5
Kevin, as you're drinking green tea you might find this article helpful:
http://www.umm.edu/altmed/articles/green-tea-000255.htm
best wishes
Hi Kevin
I have been off all meds since 2012, It will get better. I get checked out every 6 months. We have one similarity with pain. Mine was in my ribs left side for a short time. It now is gone, the other pain is in my left shoulder blade down my arm. But I am pretty confident as are doctor it was related to my herrniated disk that were just repaired again. So I am hoping the inflammed never will die down.
I was on Rev maints up to 2012 (feb) so i have been off everything for about a year now. I have not been easy on my body lol. I have been recovering from two surgeries on neck as i stated and other on my leg.
My last check up i was still in remission. I go back in july and am hoping for the same result.
I do some serious healthy eating and natural stuff as far as how i am treating me. My Oncol is only monitoring me. I am the doctor now lol. But he agrees with me. Believes I would do more harm to myself by being on maint theorpy at this stand point.
If you have any question feel free to ask. I have often wondered about doing an article on my journey as you are. I am just not a very good writer.
Take Care and keep pushing
God bless
Greg
Gmatt,
Thanks for the information - I find it encouraging that the pain subsided for you. Hopefully mine will to, though I hope I don't have to go through the surgeries that you did.
As for writing an article, you could submit a guest article as opposed to doing a monthly article and the Beacon has editors that will help it flow smoothly. My first few articles had several changes, but as time goes on I've got the hang of it and the editors generally only make a few grammar fixes.
An intresting read THANKYOU . I have a cancer called neroendocrine syndrome which I am told that if you have a cancer it's a good one to get... Umm I dont know if that's from everything that goes on happens in slow motion or it's just that you look so well through out most of the process.
I was intrested in reading your comments about getting back into sport and energy levels. My doctors have me now taking 2 x 10 mg OxyContin daily in conjunction with up to 6 panadol a day. I have endone for breakthrough which I try to avoid as I always seem to end up constipated after taking which in turn creates more pain. Since on these i have returned to playing golf and attempt most games to walk the course and refrain from taking a cart.
Yesterday I had an infusion of ( lutate 177 ) which is a targeted radioissoptope treatment in attempts to slow progression down. Prior this treatment they give you 2x8 mg dexamethasone tablets 1 hour before commencement. I have to be honest and say its the first time I have actually felt pain free totally . Even after the treatment you are radioactive and haveto be careful of your movements but I found the energy to go for a 3 km walk. My question is what is your opinion about long term consumption of low dose dexamethasone if it is going to have this effect on me. I would rather be active than not as I think sitting around pays havoc with your mind.
Sorry this ended up longer than I originally intended but I think a little background is good.
Paul,
I had to look up what neroendocrine syndrome was. Given that it is associated with the endocrine and nervouse systems, I'm curios what prompted you to visit the Myeloma Beacon?
With respect to getting back into sports, I was lucky that I did not have any of the bone or kidney issues quite often accompanying myeloma. I was only anemic, hence my low energy levels. Consequently, my doctor has allowed me to continue with sports, though I pay close attention to my body to make sure I don't take unadvisable risks.
In my case, I think the dexamethasone definately helped with the aches and pains. However, I personally am not in favor of taking it long term since I'm concerned it might mask strains or injuries that should be treated and might otherwise go unnoticed, particularly since some of my activities are likely to cause occasional minor injuries. If you're not doing anything too strenuous, then it might not be as big a concern. I would definately suggest discussing it with your doctor.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page