My wife was diagnosed as smoldering two years ago after suffering from a plasmacytoma that destroyed her T12 vertebrae. Her latest M-spike has doubled in the last 6 months to 2.5. HGB has also trended down and is at 10.8. No other major issues.
Michelle is going in for a bone marrow biopsy in a few days and her oncologist will determine whether to start treatment.
Here is the question.
Michelle is extremely active. Long distance cyclist and hiker. And except for multiple myeloma is still extremely fit. She wants to climb as many mountains as she can while still healthy to do so.
Assuming she does not have to start immediate treatment and given her HMG level is she OK to climb the 14,000’ Colorado peaks that are on her bucket list?
Thanks.
Dan
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Re: OK to climb mountains with smoldering myeloma?
Dan,
Having multiple myeloma does not mean you have to stop being active. In fact, being active helps the multiple myeloma patient both mentally and physically. I have thread on bicycling with multiple myeloma. I think the advice I got from my Oncologist may be helpfuo. He told me to go ahead and continue my biking but to listen to my body. Her body will tell her when she should back off.
I am an avid cyclist and love to ride my bicycle in rallies and races. But I know I from experience that I need a day of recovery after a long ride. I can't perform well on back to back long rides. My body told me this as I had lower energy levels the following day. If mountain climbing is what she loves then she should do it ,but listen to her body and back down when it tells her to.
I wish her the best and hope she is able to continue with her passion.
Ron
Having multiple myeloma does not mean you have to stop being active. In fact, being active helps the multiple myeloma patient both mentally and physically. I have thread on bicycling with multiple myeloma. I think the advice I got from my Oncologist may be helpfuo. He told me to go ahead and continue my biking but to listen to my body. Her body will tell her when she should back off.
I am an avid cyclist and love to ride my bicycle in rallies and races. But I know I from experience that I need a day of recovery after a long ride. I can't perform well on back to back long rides. My body told me this as I had lower energy levels the following day. If mountain climbing is what she loves then she should do it ,but listen to her body and back down when it tells her to.
I wish her the best and hope she is able to continue with her passion.
Ron
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Ron Harvot
Re: OK to climb mountains with smoldering myeloma?
Thanks Ron.
Michelle has been an avid and real strong cyclist for many years. A typical Saturday ride would be 65 miles with 5000’of climbing. Now 40 miles with half the climbing is what she typically does. And like you she doesn’t ride on consecutive days. In between cycling days she will hike 7-8 miles.
We met with the oncologist last week to review her latest test results. Michelle told the doctor that she has 6 new 14,000’ peaks in Colorado that she was targeting to bag this summer. The Doc told her not to be climbing at altitude because her low HGB would tax her heart. (She’s 55years old) But we wonder if he is being over cautious. She has a lot of experience monitoring her cardio at altitude both from hiking and cycling.
BTW. A few years ago Michelle placed 3rd in the MT Evans (Co)bike race. It was 28 miles straight up. Finish line was at 14,200’
And now you know what this caregiver is dealing with. (-;
Michelle has been an avid and real strong cyclist for many years. A typical Saturday ride would be 65 miles with 5000’of climbing. Now 40 miles with half the climbing is what she typically does. And like you she doesn’t ride on consecutive days. In between cycling days she will hike 7-8 miles.
We met with the oncologist last week to review her latest test results. Michelle told the doctor that she has 6 new 14,000’ peaks in Colorado that she was targeting to bag this summer. The Doc told her not to be climbing at altitude because her low HGB would tax her heart. (She’s 55years old) But we wonder if he is being over cautious. She has a lot of experience monitoring her cardio at altitude both from hiking and cycling.
BTW. A few years ago Michelle placed 3rd in the MT Evans (Co)bike race. It was 28 miles straight up. Finish line was at 14,200’
And now you know what this caregiver is dealing with. (-;
Re: OK to climb mountains with smoldering myeloma?
Hello from cloudy and gray Seattle Dan,
How much exercise and what kind of exercise is safe are difficult questions to answer and they are almost impossible to answer with scientific confidence or data. But as Ron H stated having a low hemoglobin will affect performance and perhaps safety. There are so many issues that could potentally play a role. One thing that comes to mind is the risk of altitude sickness with anemia. Also, patients can have a heart attack and/or angina when their hemoglobin falls enough. Your wife may be getting close to requiring myeloma therapy (I hope she never reaches the symptomatic stage though) from her anemia, as you may know the "CRAB" criteria look for "hemoglobin 2 g/dl below the lower limit of normal or hemoglobin <10 g/dl " as the time to start therapy.
I think this right answer is to be cautious and listen to your body. If it hurts more than usual or one has new symptoms take heed and slow down or stop. Save energy and focus for the new race she will be running -- the myeloma race. This race is a not a sprint, it's a marathon, but obviously she can do it.
Best of luck with this damned disease.
How much exercise and what kind of exercise is safe are difficult questions to answer and they are almost impossible to answer with scientific confidence or data. But as Ron H stated having a low hemoglobin will affect performance and perhaps safety. There are so many issues that could potentally play a role. One thing that comes to mind is the risk of altitude sickness with anemia. Also, patients can have a heart attack and/or angina when their hemoglobin falls enough. Your wife may be getting close to requiring myeloma therapy (I hope she never reaches the symptomatic stage though) from her anemia, as you may know the "CRAB" criteria look for "hemoglobin 2 g/dl below the lower limit of normal or hemoglobin <10 g/dl " as the time to start therapy.
I think this right answer is to be cautious and listen to your body. If it hurts more than usual or one has new symptoms take heed and slow down or stop. Save energy and focus for the new race she will be running -- the myeloma race. This race is a not a sprint, it's a marathon, but obviously she can do it.
Best of luck with this damned disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: OK to climb mountains with smoldering myeloma?
I am like Ron, used to a lot of cycling, snowboarding, just very active lifestyle.
When I got sick, (before I knew it) I started getting fatigued easier, and just not as able to do what I had been capable of.
Now I am most back to normal, but post stem cell transplant I find I can really overdo it without realizing it until the next day.
So if i go to hard at the gym, I leave the gym feeling great, but when I wake up in the morning I feel like a bus hit me and have to go back to bed due to fatigue (it is different then just being tied, fatigue your whole body is exhausted including your brain). The same thing can happen if I overdo it and go out for a night on the town, then don't sleep well. I end up having to sleep have the next day to feel human.
You wife should realize she can still be active, but her body may tell her enough is enough at times, even though mentally she wants to keep going.
I just accept this now, and still be active but try and be moderate in how hard I push it.
When I got sick, (before I knew it) I started getting fatigued easier, and just not as able to do what I had been capable of.
Now I am most back to normal, but post stem cell transplant I find I can really overdo it without realizing it until the next day.
So if i go to hard at the gym, I leave the gym feeling great, but when I wake up in the morning I feel like a bus hit me and have to go back to bed due to fatigue (it is different then just being tied, fatigue your whole body is exhausted including your brain). The same thing can happen if I overdo it and go out for a night on the town, then don't sleep well. I end up having to sleep have the next day to feel human.
You wife should realize she can still be active, but her body may tell her enough is enough at times, even though mentally she wants to keep going.
I just accept this now, and still be active but try and be moderate in how hard I push it.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: OK to climb mountains with smoldering myeloma?
Thanks Doctor Ed.
I'm not familiar with the CRAB criteria. I read somewhere the areas it covers but not the quantitative factors as you pointed out with the hemoglobin. We are so new at this multiple myeloma business
Dan
I'm not familiar with the CRAB criteria. I read somewhere the areas it covers but not the quantitative factors as you pointed out with the hemoglobin. We are so new at this multiple myeloma business
Dan
Re: OK to climb mountains with smoldering myeloma?
Dan,
There isn't necessarily specific values for each item in the CRAB acronym, and in many cases it's a matter of degree. Where there are specific tests they can perform, the test results will list the normal range.
So for Calcium, the normal range is 8.6 - 10.3 mg/dL. If you're levels are elevated, it may be indicative of bone deterioration and the resultant calcium showing up in your blood. If you're around the upper level, it's probably no concern, but if levels get significantly high (and here's where the doctor's interpretation comes in), then there's most likely an issue
Renal failure typically results from the increased calcium levels (which clog up the kidneys), or excess light chains. There isn't a specific test that determines renal failure, but instead the doctor will look at the levels of those two indicators, plus other indicators to determine whether there are issues. Again, this can range from slight malfunctions to kidney failure.
Anemia shows up with reduced hemoglobin levels, low red cell counts, etc. (usually those tests covered by the Complete Blood Count (CBC) test. Again, lab results should provide the normal and levels significantly below normal raise concerns.
Bone Involvement shows up as bone pain, lesions, fractures, spinal deterioration, etc. You won't find specific levels, since these are typically determined by skeletal x-rays, bone density scans, MRIs, etc. that then need to be interpreted.
An internet search of "Myeloma CRAB", will provide plenty of references for more information, plus also discuss it with your doctor since he/she will most likely have their interpretation.
There isn't necessarily specific values for each item in the CRAB acronym, and in many cases it's a matter of degree. Where there are specific tests they can perform, the test results will list the normal range.
So for Calcium, the normal range is 8.6 - 10.3 mg/dL. If you're levels are elevated, it may be indicative of bone deterioration and the resultant calcium showing up in your blood. If you're around the upper level, it's probably no concern, but if levels get significantly high (and here's where the doctor's interpretation comes in), then there's most likely an issue
Renal failure typically results from the increased calcium levels (which clog up the kidneys), or excess light chains. There isn't a specific test that determines renal failure, but instead the doctor will look at the levels of those two indicators, plus other indicators to determine whether there are issues. Again, this can range from slight malfunctions to kidney failure.
Anemia shows up with reduced hemoglobin levels, low red cell counts, etc. (usually those tests covered by the Complete Blood Count (CBC) test. Again, lab results should provide the normal and levels significantly below normal raise concerns.
Bone Involvement shows up as bone pain, lesions, fractures, spinal deterioration, etc. You won't find specific levels, since these are typically determined by skeletal x-rays, bone density scans, MRIs, etc. that then need to be interpreted.
An internet search of "Myeloma CRAB", will provide plenty of references for more information, plus also discuss it with your doctor since he/she will most likely have their interpretation.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: OK to climb mountains with smoldering myeloma?
Dan,
I'm in agreement with Ron and Lys2012, you don't have to go dormant just because you have multiple myeloma. When first diagnosed, my first doctor told me to quit biking and not lift anything more than 20 pounds for fear of injury (which seems to be a standard preventative recommendation). My only symptoms were anemia (and M-Spike), so as I started discussing this more with my second doctor, we settled on what my levels of activity should be based on my particular condition.
Personally, I let up on the intensity of my biking and weight lifting, quit playing hockey, and in general avoided taking ill-advised risks. I let my body tell me what I could handle and when I was doing too much. Once I began treatment and blood counts came back up, we (me, the doctor, and my body) allowed the intensity to come back up. I reached complete response about 4 months ago, and have no restrictions now. My personal thinking is that the more I do to keep my body healthy, the better I am equipped to battle this disease now and in the future. However, I also avoid overextending my body to the point it has to work so hard to recover that it might weaken its ability to combat the multiple myeloma.
I'm in agreement with Ron and Lys2012, you don't have to go dormant just because you have multiple myeloma. When first diagnosed, my first doctor told me to quit biking and not lift anything more than 20 pounds for fear of injury (which seems to be a standard preventative recommendation). My only symptoms were anemia (and M-Spike), so as I started discussing this more with my second doctor, we settled on what my levels of activity should be based on my particular condition.
Personally, I let up on the intensity of my biking and weight lifting, quit playing hockey, and in general avoided taking ill-advised risks. I let my body tell me what I could handle and when I was doing too much. Once I began treatment and blood counts came back up, we (me, the doctor, and my body) allowed the intensity to come back up. I reached complete response about 4 months ago, and have no restrictions now. My personal thinking is that the more I do to keep my body healthy, the better I am equipped to battle this disease now and in the future. However, I also avoid overextending my body to the point it has to work so hard to recover that it might weaken its ability to combat the multiple myeloma.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: OK to climb mountains with smoldering myeloma?
Kevin J wrote: "However, I also avoid overextending my body to the point it has to work so hard to recover that it might weaken its ability to combat the multiple myeloma."
Nice info from the last 2 post.
Michelle's calcium is at 8.7 so no problem there. RBC and HCB have dropped to 3.3 and 10.8. M-Spike has doubled in 6 months to 2.5.FLC, Albuian Creatine and B2 Micro. are in normal range.
Your condition sounds like it may be similiar to Michelle's. What were your Numbers when you started treatment? What was your treatment?
Having our a bone marrow biopsy in a few hours. Wish us luck.
Dan
Nice info from the last 2 post.
Michelle's calcium is at 8.7 so no problem there. RBC and HCB have dropped to 3.3 and 10.8. M-Spike has doubled in 6 months to 2.5.FLC, Albuian Creatine and B2 Micro. are in normal range.
Your condition sounds like it may be similiar to Michelle's. What were your Numbers when you started treatment? What was your treatment?
Having our a bone marrow biopsy in a few hours. Wish us luck.
Dan
Re: OK to climb mountains with smoldering myeloma?
Dan,
Here are some of the pertinent lab results from just before I started treatment..
White Cells 2.60
Hemoglobin 9.0
Platelets 104
Red Cells 3.20
Calcium 9.4
IgA 3390
M-Spike 2.7
I was able to get into the CRD (Carfilzomib, Revlimid, Dexamethasone) trial at the University of Michigan with Dr. Jakubowiak. I reached VGPR after 3 cycles, and CR after 12 cycles (though I was on the border of CR after 6 cycles). After cycle 6 or 7, I was doing pretty much everything I'd done pre-cancer except hockey, which I got the go ahead for after CR.
Except for spending two days every other week getting poison pumped into me, life's close to what it was 2-3 years ago, and I'm probably in a bit better shape because I'm more committed to my diet and exercise than I was before.
Good luck, and I hope you're able to find a treatment that works well for your wife and allows her to stay active.
Here are some of the pertinent lab results from just before I started treatment..
White Cells 2.60
Hemoglobin 9.0
Platelets 104
Red Cells 3.20
Calcium 9.4
IgA 3390
M-Spike 2.7
I was able to get into the CRD (Carfilzomib, Revlimid, Dexamethasone) trial at the University of Michigan with Dr. Jakubowiak. I reached VGPR after 3 cycles, and CR after 12 cycles (though I was on the border of CR after 6 cycles). After cycle 6 or 7, I was doing pretty much everything I'd done pre-cancer except hockey, which I got the go ahead for after CR.
Except for spending two days every other week getting poison pumped into me, life's close to what it was 2-3 years ago, and I'm probably in a bit better shape because I'm more committed to my diet and exercise than I was before.
Good luck, and I hope you're able to find a treatment that works well for your wife and allows her to stay active.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
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