Pat’s Place: Fourteen Months And Still No Go!
It has been fourteen months since my autologous stem cell transplant. Although I’m in remission (Thank God!), several challenging residual issues remain.
I can remember hearing from other transplant recipients in past years, bemoaning the fact that they still weren’t “back to normal” months or more after their stem cell transplants. I didn’t pay much attention at the time. But now I think I might understand how they felt.
Like those I have heard from in the past, I am still not fully recovered from my transplant.
I noticed it again last weekend. After doing an hour of light yard work, I felt faint and out-of-breath. So, I took a break and finished later in the day. And I notice it every Wednesday when I head over to my local infusion center for blood work and sometimes subcutaneous Velcade (bortezomib).
One could ask, “But Pat, shouldn’t you expect to tire easily while you are on maintenance therapy?” Fair enough. But I am on a lighter treatment regimen – using the same drugs – than I was before my transplant. And I feel worse!
And don’t get me started about how I’m practically in a coma every morning when it’s time to rise and shine…
How I feel is reflected in my weekly blood work. My neutrophil (ANC) count is chronically low, even with more time to recover between cycles.
Revlimid (lenalidomide) is the most likely culprit. But my dose has been cut all the way down to 5 mg, and I am still neutropenic (low white blood cell count) once a month. That never happened to me pre-transplant – and I’m not even taking dexamethasone (Decadron) any more!
There’s more. I have been diligently trying to re-build some muscle following my transplant. Since I am living with residual bone damage, I can’t lift heavy weights. But some controlled movements are safe. For example, I can still do push-ups; I’m up to four sets of thirty.
But you wouldn’t know it by looking at me! I do squats using dumbbells, leg extensions, rowing, arm curls, and much more – all to no avail.
I met my wife when I hired her to manage a health club I had built in a small town back in the 1980s. I was a football coach for 10 years. My point: I know how resistance training should work. For example, even if you can’t do heavy lifting, multiple sets of push-ups should start to show in one’s chest and triceps, especially if you are consuming lots of extra protein like I am.
Is this a result of my transplant? Or does taking Revlimid – even at low doses – make it more difficult to build one’s body back-up? After all, my understanding is that Revlimid restricts our bodies’ ability to create small new blood vessels. While that’s a good thing when one is trying to starve new myeloma lesions, I’m guessing that Revlimid wouldn’t be a bodybuilder’s best friend!
I have asked my doctors about all of this – the fatigue, inability to recover quickly after doing lawn work or exercising, and the inability to build muscle – and they just shrug. I can practically read their minds: “We’re keeping the guy alive, isn’t that enough?” NO! It’s not enough!
While I will be the first to agree that novel therapy agents were never designed to be used indefinitely, ongoing maintenance therapy is becoming the norm. I believe the drug companies that manufacture these chemotherapy agents have a responsibility to help our physicians develop strategies to help us live better lives.
Sorry, but it isn’t enough just to keep us alive anymore!
All things considered, I’m doing just fine. But I think myeloma survivors are doing ourselves a disservice by not pushing our medical teams to work together to try and overcome as many quality of life challenges as possible.
I hope October is a great month for all! I would love to hear from some of you who have had stem cell transplants one, two, or three years back. Are any of you still having “residual issues”?
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 .
I have read your article and I agree with you. My story is that I am 46 yr old African America. Woman diagnosed in 2009, I have had 2 stem cell trans. So far. I was very disappointed with my 1st one in May 2010 my second one was done in April 2012... I am trying to stay hopeful, but as you said some days I feel as bad as before. I am now doing the Velcade (subq) ... I am giving this All I have !!
HI Pat...thanks for sharing about your 'post transplant/maintenance chemo' issues! My transplant was Jan. 2010, and I did take Revlimid for a year after that (after the 100 days wait time). I think that your situation parallels mine in some ways...I couldn't handle the 10 mg. dose due to low neutrophils, and my oncologist, who is always very kind, lowered the dose to 5 mg. Then, after the year was up, he took me off revlimid because the news had just come out about secondary cancers. I was already in a remission for about the last 8 months of that treatment, so that was fine as far as I was concerned! Thus have not been on any chemo drugs for the last 18 months. I feel better now than I did then, and stronger too. I also have more energy. mY feeling is that if I need more drugs in the future, so be it, but in the meantime I am building up strength, and I hope that my immune system is getting stronger also!! I realize that there are really so many differing approaches to handling myeloma treatments that it has become rather baffling, at least to me. Sounds like you do get a lot of work done though...and are still very fit too.
had stem cell transplant in may 2008. have had revlimid and thalidamide in series after,over the past three years, just finished 6 month series 25mg rev and weekly velcade monthly zometa. energy levels wayne mostly at the end of each series,still have not been able to build body back up at all, did have left clavicle removed in dec 2011, then roke left arm in march and is still not healing correctly.
have been fotunate to be able to work all day every day but seems weekends are needed to recoup,all and all everthing seems to be going well
Hi Pat - thank you for all your posts detailing your continuing struggle with this disease. I was diagnosed with MM at 57 and had an auto SCT in June 2010 after four months of RVD. I went on Revlimid maintenance a year after the transplant because of the positive statistics on progression free survival with that treatment plan. Like you, I had issues with extremenly low neutrophils which necessitated several "rest" periods to allow my blood counts to recover. I was always fatigued, had terrible insomnia, and was discouraged to the point that I considered taking anti depressants. I made the decision over 3 months ago to discontinue the Revlimid maintenance and take my chances on an earlier relapse. My quality of life became the overriding issue in making this decision and I have no regrets...only relief. I feel so much better already - more energy, little insomnia, and a much better outlook on life. I know everyone has to make their own decision about treatment, but my personal philosophy is that until I have a relapse and have to start chemotherapy again, I'm going to enjoy life and feel good. And I am! Keep those posts coming!
Hey, Pat. Good to read you again.
I just passed my first anniversary of ASCT after 4 months of Velcade/Dex... ended up with a VG partial. No post-transplant treatment. Recent bloodwork stable. So, in remission... all good on that front.
However, the chemo pre-transplant (Melphalan) damaged my heart: lost 20% function in my lower left ventrical. Subsequently, what I read from you above is exactly what I am experiencing. Sheer exhaustion after what would formerly have been minimal exertion. it's very frustrating for sure, and in my case - permanent.
However, I do have to say that any frustration I may experience is quickly sidelined by the reality that I am not currently in any pain (wow... two broken vertebrae certainly redefine what THAT means. Yay kyphoplasty! ), and that I am not suffering as long as I am relatively quiet.
And I am alive! For me... yeah, that's good enough. Life doesn't come with guarantees. It doesn't come with promises. It just comes, and we have to deal with it as it does so. I am grateful for the time I have been given to square things, for the new wisdom I have acquired, and frankly, in many ways, for this experience. I'm a better person in more ways than I am a lesser one on this side of diagnosis... and that's a pretty good deal, I think.
Find the bright side, friend.
Pat,
Dex is a muscle-wasting steriod, so that may be part of your problem if that is part of your mix. It just takes lots of time and patience. Best wishes and keep up the great efforts on all fronts.
So glad to read this column, and the subsequent comments, about the effects of maintenance therapy. My ASCT was in May. I did not get a complete response (m-spike 0.1); yet I still have not made a concrete decision on whether to take maintenance therapy - for all the quality of life issues you mentioned. I can accept the idea of "treatment" when indicated but not sure about taking chemo, even a low dose, before that time. It's hard to find written information on how people really do on "observation only" maintenance. I wonder if it would be stupid to choose that alternative ...
I plan to do low-dose revlimid for a few months and then do OBSERVATION ONLY... Why? When I was diagnosed my M-spike was stable, and in fact, even went down over the 8 months before I started treatment. My presenting symptom was anemia - although I did not feel it. I have since learned that this anemia was probably not due to crowding out of red blood cells, but rather part of a chronic inflammatory response resulting in particular cells storing but NOT releasing iron. Such an iron-withholding response is actually protective against bacterial infection when it is acute, but obviously not so good when it is chronic, leading to anemia.
Now that 4 months of rev plus dex plus biacin have knocked my spike from 5 to 0.5 (with a further drop, if not CR, expected), I am collecting stem cells, NOT having a transplant, and seeing if my restored immune system - my HB is back to 13 - can handle the low-level of disease, just as it probably did for many years before. But as mentioned at the outset, I WILL probably take REV alone for a few months upon ending induction with rev plus dex plus biacin.
You can also look to other supplements during maintenance, such as curcumin, calcium, vitamin D, etc. Not saying these are miracle workers -- but there are options...
P.S. I hate DEX. It makes me sweat at night, screws up my tastebuds about 4 days after a 40 mg dose, and makes me lightheaded about 4 days after a 40 mg dose. Funny thing is: I really don't have the hyper and rage effects. Still it is a bad drug....
Pat,
You and EJ are the same age, and underwent your SCT's within days of each other, although yours was (I believe) at relapse, and EJs was after his induction therapy. That being said, I am constantly surprised by how different the two of you reacted to the treatments. It just goes to show you the disease and treatments can affect people soooooo differently. The night EJ got out of the hospital, he took me and some out of town cousins sight seeing around the D.C. Monuments (they are spectacular at night). He was so happy to be breathing fresh air again! His M-spike seems to hover someplace around 0 and "trace" so I'm not sure he ever had a CR, but he has been drug free for 16 months now, with the exception of his monthly zometa. We know this holiday won't last forever, but EJ is doing everything he can to make sure he is in a good place physically and emotionally when he relapses.
Lyn
I love reading your comments, everyone! Sounds like I'm not alone. It will be interesting to learn just how much continual maintenance therapy helps us in the end. Hope overall survival (OS) numbers look better than they do now. Very little difference so far--possibly not enough difference to make it worth doing it from a quality of life standpoint.
I have a number of friends who are on extended drug holidays in Minnesota--even after one or more relapses. Docs stabilize them, then take them off meds. Sometimes I think it's a regional thing.
Jenny, I haven't been on dex as long as some. I was off it for over three years, then three months after my transplant and now three months again. I'm thinking its the Revlimid...
I am the fortunate exception. My SCT was last February, about 10 months ago, and I'm feeling 100% back to normal. My strength is back. I'm working full time. I had a full head of hair pre-transplant. It all fell out and all grew back. I'm taking 15 MG of Revlimid (3 weeks on/1 week rest) and 25 mg of Prednisone every other day. Side effects are minimal (hand and foot cramps; end of day fatigue). I play tennis 3x/week and recently played a tournament in 100 degree weather (lost, unfortunately). Not reporting this to brag or to make it seem like I did something to deserve such good fortune. It is clearly just God's good grace on me. But I do want people to know that such outcomes are possible.
Hi to all. I was diagnosed Feb 2010, had auto SCT Nov 2010. M spike went down to .03 which they still called a partial response. I took no drugs until this year in Feb when my m spike jumped to 1.1 . I now take rev 10mg 3x a wk, pred 20 mg 3x a wk and cytoxin daily. I must say after a few months of recovery ( which I felt like would never end) I really felt fairly normal after my transplant besides my usual allergies. My m spike is down to .7 now. My physician is discussing an allo transplant with me. I feel fairly normal on this regimen. The thing that bothers me is that he says things may get worse after the transplant but they just don't know. It could cause liver or kidney damage which right now my kidney numbers are a little high but ok. I am not ready to choose something that could give me less of a quality of life. Not now anyway. I have some more things I want to do in my life.
Ed's good fortune must have something to do with the fact he graduated from the University of Wisconsin!
Look, I know dozens of auto transplant recipients who are doing just fine. I'm doing just fine. But I'm getting the feeling that most of us on post SCT maintenance feel some ill effects for year(s) after our transplants. But if you don't, GREAT! I just don't want those that do to feel bad--or that they are alone.
I think there are days that all of us who are dealing with this just wish that we would wake up from a bad dream. Every patient is different but I am sure still have bad days. The Myeloma Beacon has helped me soooooo much because I don't feel like I am alone. My transplant physician, at the time we first discussed it, said to me , with my age and new drugs that were being approved that maybe I could have ( live) another 8 years. That was the kick in the gut to have someone estimate your days on this earth. I don't have bone damage but I do have the chromasone13 deficiency . So they are not sure how my body will react. Heck , they don't really know how any of our bodies will react. But for now I am just as alive as the next person. Yes some days tired but some days are good. When I see my grandchildren , my heart starts to smile and it doesn't matter how I feel. I trust God to see me through this. I do pray for everyone with this tricky monster that lerks inside our bodies that we will have a good life.
I agree with you, Pat! This is the 21st century. We sent humans to the moon and got them back safely. Why can't drug companies figure out how to deal with side effects. For 80 years, my mom always popped out of bed 7am, bright eyed and bushy tailed, made her bed right away, got ready for the day etc. etc. After two years of revlimid maintenance therapy, she began to stay in bed, seemed depressed and lethargic, and lost her appetite. Her doc also shrugged and had an "oh well" approach because he wouldn't admit that he didn't know anything. It was really frustrating for both my mom and me because we didn't realize or understand what was going on and what to do about it. We all know our bodies well, (especially someone like you who has been in the fitness profession) and we KNOW when our own wiring, plumbing, and engines aren't working right.
Glad the Beacon can help! I strongly agree that docs don't know how our bodies will react. Its all trial and error. I am going to be writing soon about the downside of chromosomal testing and labeling patients as "low risk" or "high risk."
And YES! Barb's right! This stuff can throw our entire bods out-of-whack!
I love your column, Pat, and the responses are wonderful. I've wept over many of them.
I chose NOT to take post-TP drugs. My M spike has stayed at "trace," though I am 4/14 crossover. I've been chemo-free since the transplant.
Pat, you didn't get to recover from your TP before you were hit with chemo!! Wow, I don't know how you've done it. I'm really amazed, because the first year for me was a painfully slow recovery, with many infections, no weight gain and lots of extra antibiotics. My Mayo doc and I even discussed gamma globulin treatment at my one year anniversary appointment. But when I went home after that first anniversary, I just quit getting chest infections. In my second year, which I just passed, I've felt more well than I have in years!
So, we're all a little different, but it takes time, the hit in the gut you've had is going to make that recovery longer.
Keep up your cheery self, you inspire me and God bless you - and us all,
Julia Munson
Pat,
I am surprised that with your level of exercise that you are not feeling stronger and building some muscle mass. I don't think it is the velcade and like you have said you are only on 5 mg of revlimid. Somehow it has to be related to the transplant. I have not had a transplant but have been on rvd or just vd continuously for over 3 1/2 years. I was taken off revlimid when I developed meningitis earlier this summer and am now on VD once every two weeks. I did not notice any difference in my strength or stamina since being off revlimid. I was taking 10 mg on an on 21 off 7 cycle. I have been off of it going on 3 cycles. As you know I am an avid cyclist and that has helped with stamina.
Maybe working in some stationary bike work into your exercise routine might help build stamina and counter the fatigue. Most health clubs offer spin classes.
Ron
Hey Pat, good to hear from you again. I can tell you this, I am 8 months out of ASCT and I still am not back to normal. Then I was started on 10mg Revlimid and now I am even more fatiqued and have abdominal cramping. I ask my doctor about this and i get the same non-response as you get. So I asked him to refer me to a Physical Therapist and I have been doing exercises for 3 months now and I can tell you that it has made one heck of a difference. I purchased those stretchy rubber band things ( I bought real good ones from the Internet< that have a variety of resistances) and I feel better and I can see the difference in the mirror, how my muscles have been coming back. I exercise everyday for 45 minutes, following the exercises that the PT gave me. Don't know if this will work for you, but it can't hurt to try. Hope you feel better, george
So great to hear from Julie, Ron and George again! Maybe I should start writing more than one column a month for the Beacon again! I feel like I'm attending a reunion once each month. Working backwards, so glad to know that you are exercising regularly, George. The PT idea is a good one. I have had trouble gaining muscle mass from the beginning. I lost so much when I was sick and bedridden initially after my diagnosis. The only constant has been Revlimid. Five years later and I'm still not back to where I was originally--not even close. I would bike, Ron, but my right hip is extremely painful when I pedal. But I will give it another try. I do swim four or five times a week. But knowing Ron, bet there's no way I could ever match his intensity! Keep peddling good friend! Julia, glad you are finally feeling better. Patience has never been one of my virtues!
Having rebuilt my body from the ground up two times (maybe three if you count the extensive damage incurred while living with a vertebral fracture for two months while docs said it was a pulled muscle--right) in 15 months as a result of induction therapy and SCT and then shortly after a damaging near death allergic reaction to Revlimid, I can say this...your body will behave differently and there is no real rhyme or reason to it specifically while on any maintenance therapy or Chemo of any kind. No mainstream physician is going to care that much either. They are only concerned with reasonable quality of life and most patients even in somewhat rough shape meet that definition for the docs. Since every person is at different health states at time of diagnosis and also when therapy and SCT takes place, what works for one won't work for another. I made myself stay in shape up to transplant. The night before my subclavian catheter was inserted last summer I ran about 5 miles. Is that something a lot of myelmoa patients can do? Well no, and I feel fortunate. Yet post transplant I had the same issues most of us encounter, I just chose to ignore them and ignore my docs take it easy warnings. That is just not me. 5 weeks out of transplant I ran a nice 5k. Was it easy? HECK NO! Was it risky? I don't know. I went off the fact that there wasn't any permanent damage to my body from Myeloma or treatment as far as anybody could tell and then just pushed as hard as I can. Having stayed in shape for the last 11 years with continuous running and weight lifting maybe my body was more prepared than some? I will say this though, which is why I wanted to write Pat, the effort you put into physical fitness does not produce the same results as it did prior to treatment. On one hand I felt stronger than I did pre transplant, true story. But the results came a lot slower. It certainly changes how your body responds. After going through the Revlimid reaction I had to begin all over again. And with that I noticed that I had to work out twice as hard for maybe half the normal results. Finally, after months and months I'm seeing results I didn't see before. But it takes a lot of commitment, a lot of good eating, a lot of protein, and a general refusal to give in.
I guess my recommendation overall is to just keep moving. Even if you feel crappy, just get your body moving. Do what you can and then a little bit more and feel proud. I agree with you Pat that what the docs see as enough is totally not enough for most of us. Let us not be hindered by their perspective. So you feel short of breath, well take a small break and then get back to whatever it was that you were doing. And for those that really just need others around us to know how we feel when we are struggling, when we are just exhausted, they can't get it. Be your own boss and do what you can. We really don't need others to grasp the challenges, we just have to get up and do it for ourselves sometimes.
Excellent contribution, Kenneth! Thanks for the inspiration. And a 5 K five weeks out? A bit crazy! Good for you!
My wife is about to go through Bone Morrow for MM next 3 weeks. she has all the symptoms mentioned, night sweats, not been able to sleep, bloating, etc. She has 7 fractured vertebrae. we are thinking about participating in a random national study that includes a 2nd bone morrow. Her m-protein is still high around 1.8 down from 5 in April 2012.
Bless all of you and hope better days are ahead for all of us
Hi Pat, I feel you! I've been working out for 18 months solidly, a bit longer with some breaks. I was Young, and pretty fit when I was diagnosed (fit aside from the MM of course). I am cycling long distances 100kms a week, average. I hit the gym for a boot camp class, I can do 2 sets fo 30 push ups (regular ones, not girlie ones) and I still can loose the last 10 pounds of the 20 I put on from my treatment / stem cell. And I have not touched chemo, or dex in two years! It's hard buddy. doesn't sound like alot, but I was 125 pound, went up to 150, back to 135, and I am only 5' 2" so it shows.
I threw out all my old clothes and bought new ones. It made me feel a whole lot better. I've been able to build some arm and calve muscles but can't loose the belly. I was at a surivivor conference for young adults and we did a whole seminar on cancer and excercise. Blood cancers are especially bad for muslce wasting. you loose weight, but regain it all as fat, when most of the weight you lost was muscle mass, so it is really hard to retrain your body.
I just wanted to add that I actually feel aerobically very fitter then before cancer. Long distance cycling can be very challenging to many people once you reach the hills, but for me now, no problem, easy! Just wish my body composition would catch up! Just keep moving
I wish "freidoon's" wife all the best! Good luck!
Lys2022: So glad things are working out for you! But the key to your fitness renaissance is "I have not touched chemo or dex for two years!" That sure helps! I'm convinced that I wouldn't feel like I'm trying to walk-up a steep hill just to stay fit. I've accepted that I will be on maintenance, probably for the rest of my life. Just makes living a normal life tougher...
Love your column am 63 with non secretory myeloma. Started in 1/2010 2 weeks radiation 5 months chemo (velcade) revlimid dex stem cell transplant 7/9/2010 stem cell transplant 12/9/ 2010 Pet scan every 6 months blood work every 3 months Physically fine biking lifting weights golf as much exercise as possible. Hackensack Medical is where I am treated.
I push myself everyday to sweat and do physical activity Look forward to more columns by you good luck to you and if ther are other non-secretory people around I would love to hear from them keep pushing!!
Hi Pat, have only just discovered this website. I know it can be so frustrating that you cant do the things that you use to (is this how the infirm elderly feel?). I see it as I am still alive and I can still do (most) things even if it takes longer to do them.
I am an Australian & was diagnosed with MM in April 2009 (fracture in vertebrae)at the age of 43. I have 2 young children 6 & 10 and was very active prior to diagnosis. MM can certainly turn your life upside down (but so can children, getting married etc. its just that they are not usually life threatening). I continued as best I could to be active and managed to fracture another 2 vertebrae. Not pleasant! My MM was unable to be controlled by any of the chemo agents (VAD, DEX, Thalidomide) and I had an autologous SCT in July 2010. Apparently I nearly died (heart problems, renal failure and lung collapse) but the cancer was reduced by only 15% so 2 months after the transplant it was back to where it had been prior to the SCT. Velcade came next but after 3 cycles it was no longer useful. I was then told that there was no more treatment. We had to tell the children, an exceptionally difficult thing to do. 10 days after we told the children the specialists decided to trial a reduced chemotherapy low intensity total body irradiation allogenic SCT on me (one nurse did say to me that if I didn't work they wouldn't be doing it again). I had the allo in April 2011. Tah dah, I worked (of course there were complications and still are). The MM is now in remission, my paraprotein (M protein) is not detected, my bone marrow looks good, my bone density (where I have it) is normal and I am alive.
I am amazed at what I can do after all that my body has been through.
Hello Gilbert and Libby! Glad that you are both doing well. Wonderful to know the Beacon is touching lives on the other side of the world! Thanks for reading, Libby! And Gilbert, I agree. It would be great to hear from more of our fellow patients that are non-secretory...
Hi Pat,
I want to thank you for sharing what you are going through...your joys and frustrations. It's such a relief to know I'm not imagining that my own struggles with extreme fatigue and inability to get back in shape have to do with my treatment and maintenance therapy drugs rather than that I've just gotten lazy. I had tandem autologous transplants in January and March 2011 and am in remission. I had consolidation chemos through July 2011 and began maintenance therapy with velcade, dex, and revlimid in September 2011. I have been taking chemo drugs for two years now with very few breaks. I feel blessed to be alive, spending time with my family, working and doing everything I did before my MM diagnosis, and for the most part, I feel good, but I have been very frustrated with the continuing extreme fatigue. My weight keeps going up as well, despite a pretty healthy diet. (Of course I am a 53 year old female with all the hormone changes that entails, so can't blame it all on meds.) I don't exercise like I should, but some of that has to do with how tired I feel. When you wrote that you were "practically in a coma" in the mornings I thought "Wow! it' s not just me!" Even when I get a decent night's sleep I often have to drag myself out of bed. I fight the fatigue throughout the day at work and sometimes am afraid I'll fall asleep driving home. When I mention these things to my doctor he just shrugs and suggests that I should try getting up earlier and exercising before I go to work. I have to admit I only tried that a couple of times, but I spent the rest of the day feeling like my body was made of lead and It was a struggle just to put one foot in front of the other. Due to repeated illnesses last winter my velcade and revlimid were reduced to the lowest doses and I get IVIG's monthly, but my energy and stamina aren't any better. I have two more years of the revlimid, velcade, dex maintenance program and really don't want to keep feeling this way if I have other options. I am in remission, with no sign of cancer, so I wonder if I wouldn't be better off to stop the maintenance and regain my energy? I want the best long term results of course, but from what I've read, the maintenance is not necessarily providing much more time. I would appreciate any thoughts or experience others might have regarding this 3 year maintenance vs monitoring w/o meds until something shows up. Again, I am very grateful that the cancer is under control, and know that I am fortunate to be benefiting from the newest medical advances, but if I can feel even better I want that too!
I can relate to my body "feeling like its made of lead," Angela! And I would like to go on record that--from a patient's perspective--RVD isn't maintenance! It's rough stuff! My docs want to give me neupogen shots, just so I can keep on my maintenance protocol. My body is saying "enough for now!"
Mayo Clinic docs routinely allow many of their patients to bo on extended drug holidays. But hard for me to advise you to take one, when I'm not! But considering my aggressive relapse, we made the decision to keep pounding my myeloma. Why have your/are your doctors being so aggressive? Ask them about taking a break and let us know what they say...
Thank you for your reply, Pat. The only reason for my aggressive treatment is because I'm on a research protocol at the University of Arkansas for Medical Sciences. This particular protocol, Total Therapy 4, outlines a program of treatment from diagnosis through maintenance. The doctors, of course, will make adjustments for the patients' responses and I am at liberty to remove myself from the study at any time, but if I can make a contribution toward improving treatment for multiple myeloma then I want to stick with it. My doctor at UAMS is great. He is very enthusiastic about their research and feels we are on the verge of being able to use the term "cure" with MM, but I'm not sure how seriously he takes my complaints. When I saw him in June and told him about my increasing neuropathy, insomnia, and fatigue he urged me to continue with my maintenance program but agreed to reduce the doses of the revlimid and velcade (but not the dex). When I pressed him, he said he strongly believed this was the best therapy for long term remission and that if his own brother had MM this is what he would want him to do. He did agree that if I was still having problems when I return this Dec. we could talk seriously about changes. As much as I like my doctor, I still wonder if he truly thinks about the quality of our everyday life. I wish I could get another opinion from someone just as we'll educated in MM but without the vested interest in the protocol. The oncologist who carries out my treatment here in Kansas City doesn't have a lot of experience with MM specifically, so unless my labs are really bad, or I'm sick, he doesn't make any changes. Personally, since I have not had any sign of cancer since my first SCT, I would really like to start backing off treatment, but I'm chicken ! I sure don't want a nasty relapse!
I hesitate to comment this way, but makes one wonder which is more important--study or patient. But sounds like lots of positives if you can stick with the protocol. It's just a lot to put one's body through...
Sorry to do this to you Pat, but I like to ask "Angela Bennett" about the study she participated. There is a national study that uses the following routines
1. Chemo (Dexam, bortexomib, lenalidomide)
2. Maintenance (revilmid)
3. Another Transplant
Pat: were in this study?
Regards
Sorry, but I'm not sure what you're asking, freidoon. Apparently, Angela is in a Total Therapy 4 study at University of Arkansas Medical Sciences in Little Rock.
Freidoon, as Pat said, I am in the Total Therapy 4 research study at UAMS. This study is specifically comparing the therapy I am receiving with a slightly less aggressive model of same therapy. (One less chemo treatment at the beginning and one less at end with other small changes in between. Same 3 year maintenance though). If you are wanting more specific information about the drug combinations, etc. I can get that info. for you. Let me know.
Hey guys, some were asking about MIRT's Total Therapy protocols. As I understand things, TT-4 is a follow on to TT-3. It is basically a "Lite" version of the Standard TT-3 and is designed for low risk MM'ers. There is a companion clinical trial, TT-5, tailored for high-risk MM'ers. You can find more information by visiting Myeloma.UAMS.edu, clicking on "Clinical Trials"and then clicking on the individual trial links.
Hi Pat. You raise a good point in asking whether we're too easily satisfied with simply surviving. I think we should expect more, but have no problem with never getting "back to normal." My normal is now different, but satisfying.
I was diagnosed in November 2010 and had ASCT in March 2011. The first two weeks home I made no progress at all and wondered if I'd ever recover. But I forced myself to get up and walk (painfully, as I had five compression fractures), at first just around the house and then outside. By June, after three months, I was able to return to work 25 hours per week - office, nothing physical.
I also started Revlimid maintenance at that time; couldn't take 10mg or even 5 for 21 days. Now I take 5mg for 14 days and 7 off. I also get Zometa monthly.
Anyway, I have gradually regained strength and stamina, but am nowhere near where I was before all this started. I never was able to build muscle, but working out has put a little meat on my bones.
I've noticed that I have more stamina at the gym than I do in physical activities such as yard work, where I tire faster. It must be something about using more muscles.
I agree the Revlimid is a big part of the problem; I forgot to take it with me on vacation and was off 14 days. I had more energy, sharper mental focus and better mood.
For now, the effects are worth the expected benefit in life expectancy and time to relapse. I'd had a CR from chemo, maintained that after transplant and my tests are consistently negative. I'm not ready to trade that for feeling a little better.
Great discussion, everyone! Ron, it is difficult to quantify quality of life, isn't it? What if you knew that staying on Rev maintenance would allow you to live an extra six months at the end of a five year fight. Would it be worth it? You would have had "more energy, sharper mental focus and better mood" for five years in return for six substandard months. I don't have the answer, and I'm sure it would vary from patient to patient. And of course, its impossible to quantify these things, because no one really knows how long using maintenance is likely to extend our lives. But I'm fascinated by this question...
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