Hello Everyone,
On January 16th of this year, I was diagnosed with multiple myeloma. Originally diagnosed as Stage 4 lung cancer in December (Pancoast tumor in my upper left lung) after suffering a mild case of pneumonia, a later needle biopsy later revealed that the tumor was not lung cancer but instead a plasmacytoma on top of my left lung. Buoyed by what my cardio-thoracic surgeon stated was clearly a better prognosis, a follow-up visit with an oncologist who scheduled a bone marrow biopsy, revealed that It had spread to my bone marrow (55% myeloma cells) therefore a diagnosis of multiple myeloma was now in order. Needless to say, I did not experience the best of Christmas / New Year holidays!. And so my journey began ...
On January 19, 2015, I began RVD therapy (Revlimid - 25 mg / day for three weeks on / one week off; Velcade - 2.74 mg sub-q twice a week; dexamethasone - 20 mg / week). One cycle complete, today I began Cycle #2.
So far, this entire experience has been frustratingly uneventful. Let me explain.
To date, I have experienced NO symptoms of multiple myeloma. My original doctor visit for pneumonia was just that - pneumonia - and the symptoms associated with that cleared up after only one dose of antibiotics. Fingers crossed, so far I have experienced ZERO side effects from the RVD treatment. Neither Revlimid, nor Velcade, nor dexamethasone seem to bother me in the slightest, and I don't appear to be experiencing water retention, irritability, or muscle loss.
So why am I frustrated?
What is bothering me is that, until this diagnosis, I was VERY actively engaged in running and weight training. Since the diagnosis, however, my doctor has advised me to not engage in any exercise which might be construed as "pounding," lest I "break" myself. As an engineer, I respect the science and physiology behind multiple myeloma and its effects on bone stability / fracturing. That said, I had a full skeletal survey (17 conventional x-rays from neck to knees, followed by 90 minutes in an MRI). The resultant report indicated I had no lytic lesions nor have I experienced any bone/back pain. In fact, the report pointed out that I had significantly greater than normal bone density - I suspect as a result of running and weight training.
I realize that I have just barely started down the myeloma trail and, to some, my ramblings above may sound like whining about nothing. If so, I apologize. I guess what I'm trying to wrap my head around is how common / uncommon is my experience so far?
It seems like the majority of Beacon intro stories I read describe some level of bone pain, bone fractures, lethargy, side effects from the treatment (especially dex) and myriad other problems. When I bring up my seeming lack of symptoms / side effects with my doctor, he tells me to not read too much into the fact that I'm asymptomatic so far. I would like to think that my prior health state / regimen is helping and, if so, I would like to augment my medical treatment with whatever is within my power to mitigate future problems. Am I deluded?
For what it's worth, I have so far heeded my doctor's recommendations but have delved deeply into an alternate exercise regimen that exerts less "pounding" on my body. I try to walk 8-12 miles / day and will soon incorporate an elliptical routine into my simplified weight training.
I would love to hear opinions from any-and-all as to whether or not I am merely treating my psyche but not my body. Even if it is beneficial in only a psychological way, I have found the walking to be a great way for me to clear my mind of negative thoughts concerning the diagnosis, so I guess I'm still ahead.
I welcome your response(s). Thanks.
Lloyd
Forums
10 posts
• Page 1 of 1
Re: Recent diagnosis with no symptoms (a good thing?)
I was diagnosed with multiple myeloma in June 2013. My diagnosis was totally unexpected because I had no obvious symptoms. I went in for an annual physical exam and was slightly anemic. My family physician said it was probably nothing but referred me to a hematologist/oncologist.
My hematologist took some general blood tests and also said the slight anemia was probably nothing but as a precaution ran some more blood tests, which showed that I had an M-spike of 4.0. A bone marrow biopsy showed 80% myeloma plasma cells. A bone scan showed no lesions. Looking back, the only symptoms I had were an increasing number of headaches but I had always been somewhat headache prone so hadn't though anything of those.
I had 5 months of chemo and an auto transplant a few months after that. I had minor side effects from the chemo but none that stopped me from living a "normal life". I kept working out almost every day during my initial chemo.
There are other people in these forums that have had almost no symptoms that would have pointed towards multiple myeloma.
As far as working out, I work out 6-7 days a week doing weights (the machines, not free weights), biking and swimming. I used to be an avid runner but had given that up a few years ago prior to my diagnosis. None of my doctors said that I had to quit weight lifting, probably because I never had any lesions.
There are many people that participate in these forums that are also very physically active. Several people are very active runners and bikers. I guess you just have to find something that works for you. I would be frustrated if my doctor said I couldn't do certain types of workouts.
Sometimes I wonder if some doctors lump all multiple myeloma patients into one category and tell them not to do workouts that are "too strenuous" just as a precaution. Obviously some patients have to be more careful than others depending on how much damage has been done at diagnosis. Perhaps your doctor would OK weight lifting for you if you did weight machines and went more for tone vs bulk (i.e., lift lower amounts of weight).
Good luck to you finding your "new life" and figuring out what types of activities you can safely do.
My hematologist took some general blood tests and also said the slight anemia was probably nothing but as a precaution ran some more blood tests, which showed that I had an M-spike of 4.0. A bone marrow biopsy showed 80% myeloma plasma cells. A bone scan showed no lesions. Looking back, the only symptoms I had were an increasing number of headaches but I had always been somewhat headache prone so hadn't though anything of those.
I had 5 months of chemo and an auto transplant a few months after that. I had minor side effects from the chemo but none that stopped me from living a "normal life". I kept working out almost every day during my initial chemo.
There are other people in these forums that have had almost no symptoms that would have pointed towards multiple myeloma.
As far as working out, I work out 6-7 days a week doing weights (the machines, not free weights), biking and swimming. I used to be an avid runner but had given that up a few years ago prior to my diagnosis. None of my doctors said that I had to quit weight lifting, probably because I never had any lesions.
There are many people that participate in these forums that are also very physically active. Several people are very active runners and bikers. I guess you just have to find something that works for you. I would be frustrated if my doctor said I couldn't do certain types of workouts.
Sometimes I wonder if some doctors lump all multiple myeloma patients into one category and tell them not to do workouts that are "too strenuous" just as a precaution. Obviously some patients have to be more careful than others depending on how much damage has been done at diagnosis. Perhaps your doctor would OK weight lifting for you if you did weight machines and went more for tone vs bulk (i.e., lift lower amounts of weight).
Good luck to you finding your "new life" and figuring out what types of activities you can safely do.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Recent diagnosis with no symptoms (a good thing?)
Lloyd,
You have kept yourself in great shape and this will certainly help you in your fight against myeloma. You are fortunate that your skeletal surveys and MRI show no lytic lesions and you have good bone density. I believe that continuing to exercise for as long as you can is helpful but I am not in a position to assess your skeletal health and the risk from activities like weight lifting and running. I have read enough stories about bone damage and breaks to know the risk is real. That is how many discover they have myeloma.
I swim and cycle for exercise. I find that exercising is a good stress reliever and is mentally healthy for me, especially when I was going through my induction therapy. As long as I could make it to the pool and swim some laps, I felt that I was still hanging on to part of my normal life and this cancer thing had not completely consumed me and keeping me in my house.
You are just a month into your treatments so it may be a bit early yet to start feeling the side effects. When I was going through my initial therapy three years ago with Velcade and dexamethasone, the first month or two was not that bad but then over time it started to creep up on me, increasing fatigue and then neuropathy and loss of appetite.
After four months of treatment, I was pretty blasted but not in any pain and still able to fend for myself. I am surprised though that you have not felt the side effects of dexamethasone yet. That is one drug that most people feel the side effects of right away and is one of the hardest drugs for those with myeloma to deal with.
Best wishes and I hope you continue to do well. Stories like yours are much appreciated. There are a lot of people who are very afraid of “conventional” medicine and “poison chemotherapy” cancer treatment for myeloma that drive them to seek alternative medicine therapies of dubious effectiveness. Your story is an example that the modern novel agents used to treat myeloma can be quite tolerable and it is possible to maintain a high quality of life while on these drugs.
You have kept yourself in great shape and this will certainly help you in your fight against myeloma. You are fortunate that your skeletal surveys and MRI show no lytic lesions and you have good bone density. I believe that continuing to exercise for as long as you can is helpful but I am not in a position to assess your skeletal health and the risk from activities like weight lifting and running. I have read enough stories about bone damage and breaks to know the risk is real. That is how many discover they have myeloma.
I swim and cycle for exercise. I find that exercising is a good stress reliever and is mentally healthy for me, especially when I was going through my induction therapy. As long as I could make it to the pool and swim some laps, I felt that I was still hanging on to part of my normal life and this cancer thing had not completely consumed me and keeping me in my house.
You are just a month into your treatments so it may be a bit early yet to start feeling the side effects. When I was going through my initial therapy three years ago with Velcade and dexamethasone, the first month or two was not that bad but then over time it started to creep up on me, increasing fatigue and then neuropathy and loss of appetite.
After four months of treatment, I was pretty blasted but not in any pain and still able to fend for myself. I am surprised though that you have not felt the side effects of dexamethasone yet. That is one drug that most people feel the side effects of right away and is one of the hardest drugs for those with myeloma to deal with.
Best wishes and I hope you continue to do well. Stories like yours are much appreciated. There are a lot of people who are very afraid of “conventional” medicine and “poison chemotherapy” cancer treatment for myeloma that drive them to seek alternative medicine therapies of dubious effectiveness. Your story is an example that the modern novel agents used to treat myeloma can be quite tolerable and it is possible to maintain a high quality of life while on these drugs.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Recent diagnosis with no symptoms (a good thing?)
Hi Lloyd,
It sounds like, apart from the myeloma, you are quite healthy and able to do a lot of exercise also! We have to remember that keeping oneself healthy in other ways than fighting cancer is important too.
Perhaps just to err on the side of caution would be wise, but still do as much exercising as possible. I had three years of bisphosphonate treatments that built up my bones to where I could lift moderately heavy items again, but am really careful about that, after having experienced vertebral fractures. The low-impact type of exercises, such as the elliptical trainer, or cycling or swimming, seem to work for many. Walking is good for one's health also.
Good luck to you, and I hope you continue to share your journey with us!
It sounds like, apart from the myeloma, you are quite healthy and able to do a lot of exercise also! We have to remember that keeping oneself healthy in other ways than fighting cancer is important too.
Perhaps just to err on the side of caution would be wise, but still do as much exercising as possible. I had three years of bisphosphonate treatments that built up my bones to where I could lift moderately heavy items again, but am really careful about that, after having experienced vertebral fractures. The low-impact type of exercises, such as the elliptical trainer, or cycling or swimming, seem to work for many. Walking is good for one's health also.
Good luck to you, and I hope you continue to share your journey with us!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Recent diagnosis with no symptoms (a good thing?)
If you have no lytic bone lesions and your bone density is above average, I don't think you have one thing to worry about when it comes to exercise. (There are several Beacon contributors who are way faster than their oncologists in the marathon ... and a whole lot stronger, too.)
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Recent diagnosis with no symptoms (a good thing?)
To all:
Y'all are amazing, as the sharing and positive comments expressed on this board are so uplifting and reaffirming! Thanks to all who have responded, both publicly and privately. In the short time since I originally posted, I have been directed by many to look up postings by specific contributors who have achieved very positive outcomes through vigorous exercise. Others have posted to this forum publicly with encouraging and useful information that has already made my general outlook seem much brighter than just a day earlier.
Thanks again - I realize that my journey into this new reality is just beginning, and I will endeavor to participate on an ongoing basis - both chronicling my adventure and, hopefully, helping others along the way.
Lloyd
Y'all are amazing, as the sharing and positive comments expressed on this board are so uplifting and reaffirming! Thanks to all who have responded, both publicly and privately. In the short time since I originally posted, I have been directed by many to look up postings by specific contributors who have achieved very positive outcomes through vigorous exercise. Others have posted to this forum publicly with encouraging and useful information that has already made my general outlook seem much brighter than just a day earlier.
Thanks again - I realize that my journey into this new reality is just beginning, and I will endeavor to participate on an ongoing basis - both chronicling my adventure and, hopefully, helping others along the way.
Lloyd
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LCharlier - Name: Lloyd
- When were you/they diagnosed?: 01-16-2015
- Age at diagnosis: 55
Re: Recent diagnosis with no symptoms (a good thing?)
Hi Lloyd,
My husband was diagnosed in November and was riddled in little lesions, with a giant one in his hip that put him on crutches for a few months. He is an avid cyclist and lifts weights. The diagnosis and start of treatment set him back some, and he eased back to low impact, much less strenuous workouts of elliptical and weight machines, not free weights. His myeloma specialist basically told him his days of lifting heavy are behind him, but then we spoke with the oncological orthopedic surgeon he is seeing for his hip. The orthopod thought upper body is ok now, just to be careful about the hip, which is much improved but still fragile.
After 4 cycles of RVD, my husband feels good again. He is back to lifting and on the stationary bike and stair mill. He is building back strength after a few months of taking it easy. I'm not sure he will get back to the power house that he was, but maybe after his SCT and recovery. He definitely intends to get back on his bike if the snow ever melts in Boston!
Hope you continue feeling so great!
My husband was diagnosed in November and was riddled in little lesions, with a giant one in his hip that put him on crutches for a few months. He is an avid cyclist and lifts weights. The diagnosis and start of treatment set him back some, and he eased back to low impact, much less strenuous workouts of elliptical and weight machines, not free weights. His myeloma specialist basically told him his days of lifting heavy are behind him, but then we spoke with the oncological orthopedic surgeon he is seeing for his hip. The orthopod thought upper body is ok now, just to be careful about the hip, which is much improved but still fragile.
After 4 cycles of RVD, my husband feels good again. He is back to lifting and on the stationary bike and stair mill. He is building back strength after a few months of taking it easy. I'm not sure he will get back to the power house that he was, but maybe after his SCT and recovery. He definitely intends to get back on his bike if the snow ever melts in Boston!
Hope you continue feeling so great!
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Recent diagnosis with no symptoms (a good thing?)
Hello Lloyd,
I, too, was totally asymptomatic. My multiple myeloma was discovered during the routine (and many follow-up) blood and urine tests. It all started with an abnormally high protein reading in the routine urine test in early November. The first scare was related to a kidney failure and life-long dialysis. A few tests later (kappa free light chain levels at 853 vs. 19, the high end of 'normal'), my PCP advised me of the multiple myeloma diagnosis on the day before last Thanksgiving!
My bone marrow biopsy (BMB) showed plasma cells at 30% and the skeletal X-rays showed multiple, but small, lesions. The bone lesions were insignificant enough for my oncologist to clear me for ALL physical activities, golf, weights, etc. All my IgG was leaking into the urine but, fortunately, there was no damage to the kidneys and no amyloidosis of the heart or damage to any other organs. My oncologist had all that checked before starting my induction therapy on December 17, 2014.
I am on 15 mg Revlimid daily (3 weeks on 1 week off), 2.17 g weekly Velcade and 20 mg dex. I think the same dose of dex as yours may be affecting me more because I weigh only 125 +/- lbs (57 kg). By our Velcade dose ratio, one would think that I ought to be fine around a weekly dex dose of 16 mg. I discussed this with my oncologist and he did not want me to change anything. That is partially based on the near excellent response I have had, my kappa free light chain reading dropping by 88% AND my protein creatinine ratio dropping to 0.1 from 2.0, after just the first 4-week cycle.
I have read some horror stories about the reaction to dex, too. However, in many cases, the problem seemed to be the prescription for 40 mg dex. That is a very massive dose even for a heavy set person. I have also adapted my coffee drinking and sugar intake to minimize the dex side effect. Also, taking the dex with a heavy breakfast and eating more on the day of dex / Velcade helps.
I also had a nasty Velcade rash after the first shot. Thanks to Multibilly (who directed me to Dan in Arizona's post about the air bubble technique for subcutaneous Velcade) and Dan, I have not had that problem by insisting on the air bubble. The Myeloma Beacon and its participants have given me both the moral support and practical advice about techniques that many oncologists and cancer clinics are not even aware of.
As Eric Hofacket has written, some of the side effects sure seem to manifest themselves after weeks of chemo. I believe it was Castaway who wrote about not having been able to tolerate the chemo after 5 or 6 months of withstanding it without any major problems. My experience of getting the Revlimid rash, for the first time, at the end of the 7th week of this treatment seem to validate that point. However, we all react differently to these various drugs and who knows what other interactions these drugs may have with what we eat, drink or do? I hope you can complete all your treatment without developing any side effects.
As it is, the multiple myeloma patient community is an exclusive group of 0.1%!! We are already quite "different"!
Wishing you a complete recovery without any side effects.
K_Shash
I, too, was totally asymptomatic. My multiple myeloma was discovered during the routine (and many follow-up) blood and urine tests. It all started with an abnormally high protein reading in the routine urine test in early November. The first scare was related to a kidney failure and life-long dialysis. A few tests later (kappa free light chain levels at 853 vs. 19, the high end of 'normal'), my PCP advised me of the multiple myeloma diagnosis on the day before last Thanksgiving!
My bone marrow biopsy (BMB) showed plasma cells at 30% and the skeletal X-rays showed multiple, but small, lesions. The bone lesions were insignificant enough for my oncologist to clear me for ALL physical activities, golf, weights, etc. All my IgG was leaking into the urine but, fortunately, there was no damage to the kidneys and no amyloidosis of the heart or damage to any other organs. My oncologist had all that checked before starting my induction therapy on December 17, 2014.
I am on 15 mg Revlimid daily (3 weeks on 1 week off), 2.17 g weekly Velcade and 20 mg dex. I think the same dose of dex as yours may be affecting me more because I weigh only 125 +/- lbs (57 kg). By our Velcade dose ratio, one would think that I ought to be fine around a weekly dex dose of 16 mg. I discussed this with my oncologist and he did not want me to change anything. That is partially based on the near excellent response I have had, my kappa free light chain reading dropping by 88% AND my protein creatinine ratio dropping to 0.1 from 2.0, after just the first 4-week cycle.
I have read some horror stories about the reaction to dex, too. However, in many cases, the problem seemed to be the prescription for 40 mg dex. That is a very massive dose even for a heavy set person. I have also adapted my coffee drinking and sugar intake to minimize the dex side effect. Also, taking the dex with a heavy breakfast and eating more on the day of dex / Velcade helps.
I also had a nasty Velcade rash after the first shot. Thanks to Multibilly (who directed me to Dan in Arizona's post about the air bubble technique for subcutaneous Velcade) and Dan, I have not had that problem by insisting on the air bubble. The Myeloma Beacon and its participants have given me both the moral support and practical advice about techniques that many oncologists and cancer clinics are not even aware of.
As Eric Hofacket has written, some of the side effects sure seem to manifest themselves after weeks of chemo. I believe it was Castaway who wrote about not having been able to tolerate the chemo after 5 or 6 months of withstanding it without any major problems. My experience of getting the Revlimid rash, for the first time, at the end of the 7th week of this treatment seem to validate that point. However, we all react differently to these various drugs and who knows what other interactions these drugs may have with what we eat, drink or do? I hope you can complete all your treatment without developing any side effects.
As it is, the multiple myeloma patient community is an exclusive group of 0.1%!! We are already quite "different"!
Wishing you a complete recovery without any side effects.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Recent diagnosis with no symptoms (a good thing?)
Hi Lloyd,
Welcome to our myeloma community. As you've already come to realize through reading posts here and through your own experience so far, a diagnosis of multiple myeloma is not the end of the world. I'm glad to hear that things are going so well for you at this point.
I am one of the runners that a couple of other posters mentioned. I had some lytic lesions when I was diagnosed, but my myeloma specialist said that I could continue running as long as I didn't feel a lot more pain. My two years of therapy so far, including bisphosphonate treatment like Nancy mentioned, has resulted in back pain and shoulder pain virtually disappearing for me.
I'm not a physician, so please don't take my story as advice about whether you should run or not. But continuing to run has worked out well for me so far.
I will give you this piece of advice though. There's a sign on the wall at every meeting of the Philadelphia Multiple Myeloma Networking Group, whose meetings I attend. It says, "Don't let the things you can't do stop you from doing the things you can do."
Best wishes to you. Please keep us posted on how you're doing as you continue on your myeloma journey.
Mike
Welcome to our myeloma community. As you've already come to realize through reading posts here and through your own experience so far, a diagnosis of multiple myeloma is not the end of the world. I'm glad to hear that things are going so well for you at this point.
I am one of the runners that a couple of other posters mentioned. I had some lytic lesions when I was diagnosed, but my myeloma specialist said that I could continue running as long as I didn't feel a lot more pain. My two years of therapy so far, including bisphosphonate treatment like Nancy mentioned, has resulted in back pain and shoulder pain virtually disappearing for me.
I'm not a physician, so please don't take my story as advice about whether you should run or not. But continuing to run has worked out well for me so far.
I will give you this piece of advice though. There's a sign on the wall at every meeting of the Philadelphia Multiple Myeloma Networking Group, whose meetings I attend. It says, "Don't let the things you can't do stop you from doing the things you can do."
Best wishes to you. Please keep us posted on how you're doing as you continue on your myeloma journey.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Recent diagnosis with no symptoms (a good thing?)
Lloyd,
I need to correct myself, this was over three years ago. After months of treatment, I did have neuropathy pain, but that mostly went away after the Velcade was stopped. Along with the neuropathy pain was restless leg syndrome type of side effect.
The best thing to relieve the neuropathy pain was exercise, such as walking or using a cycle trainer and – in particular – swimming, which could make it go away completely. It was really strange. Moving or exercising the legs worked better than any drugs I had tried using, including opiates. Which validates the point we are trying to make that exercise is important. Also, keeping busy and distracted helps take the mind of the neuropathy. It was at its worse at night, but if I fell asleep quickly it was not a problem.
Many people do not get neuropathy, and hopefully you are one of them, but it is not that uncommon as well.
I need to correct myself, this was over three years ago. After months of treatment, I did have neuropathy pain, but that mostly went away after the Velcade was stopped. Along with the neuropathy pain was restless leg syndrome type of side effect.
The best thing to relieve the neuropathy pain was exercise, such as walking or using a cycle trainer and – in particular – swimming, which could make it go away completely. It was really strange. Moving or exercising the legs worked better than any drugs I had tried using, including opiates. Which validates the point we are trying to make that exercise is important. Also, keeping busy and distracted helps take the mind of the neuropathy. It was at its worse at night, but if I fell asleep quickly it was not a problem.
Many people do not get neuropathy, and hopefully you are one of them, but it is not that uncommon as well.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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