Mobility during multiple myeloma treatment

Posted by kandc317 @kandc317, Mar 12 10:39pm

I'm the sole caregiver for my wife who was diagnosed with MM late in 2019. The journey to her eventual diagnosis started on August 11, 2019. On that day she fractured L1 and had it repaired on Sept 5, 2019. For the 3-4 weeks between these dates she was bed bound. Immediately after her repair of L1 by kyphoplasty she was up and using a walker and sitting in a chair. Everything at that point seemed to be progressing smoothly until she leaned over and felt a sharp pain in her lower back on Oct 5, 2019.
The source of this new pain has never been verified although we were admitted to an ED for the pain and they discovered through blood testing that she had MM. Very sorry to take so long with this story but it is relevant to my concern.
We were transferred to the closest cancer clinic where her oncologist/hematologist found an orange sized plastocytoma on her right hip which we believe was the source of the pain on Oct 5th. Since this time she has received 3 rounds, 9 total treatments of bortezemib, Cytoxin and dexamethasone. In addition to the treatments she has had awful painful sores on both ends due to the cytoxin (I'm told) and after that she contracted painful shingles that won't resolve.
With all she's been through despite having some success treating the MM her quality of life is not good, especially considering she still is bed bound essentially for the past 7 months. Now her legs are not capable of supporting her body per our physical therapist. My biggest question now is should we allow her to focus on her mobility and gain strength by reducing or changing her chemo regimen? We've already been told she's too weak for a SCT which means she will continue with chemo I guess indefinitely. What options have been tried/proven for patients who have significant challenges like this in addition to their cancers?
Again, thanks for indulging me. Any help is greatly appreciated.

Hello @kandc317, I apologize for the delay in response.

I'd like to invite @lisal64, @blessing19, and @larsmayo who have all talked about mobility issues in themselves or someone they are caring for. Although the causes and location of the mobility issues from multiple myeloma may be slightly different than your wife's, they may have some similar experiences and concerns as you.

@kandc317, did you and your wife discuss the potential for decreasing or altering the chemo treatments so that she could gain strength in her legs back? Did they think this was a plausible compromise, were the treatments set to be the same regimen for the foreseeable future or are her current treatments to get the myeloma under control in the short-term?

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We see the doctor monthly so I entered my thoughts about potential treatment alterations into their patient / doctor portal. No response yet although I am also planning to call her drs nurse. She can usually get us quicker responses to specific questions. All we know currently is my wife is too weak now, at the end of her 4th cycle to do SCT and they have already scheduled a 5th chemo cycle. Disappointing for sure but I know my wife too well and that 5th cycle is a driver for her to do as much as possible to regain her strength. I just don't know what to expect concerning how long it may take to regain enough strength. All treatments have been the same except if her labs indicate elevated stressors in liver or kidney function, etc they may give less of or remove something from her standard scheme on a weekly basis. I would assume most drs would do this but have no other reference points. Ironically, she's tolerated the drugs pretty well. No nausea or diarrhea. Her appetite is also improving. It's the other things like developing shingles, and sores on both ends of her body that have been hardest to overcome. Thanks for your response.

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@JustinMcClanahan

Hello @kandc317, I apologize for the delay in response.

I'd like to invite @lisal64, @blessing19, and @larsmayo who have all talked about mobility issues in themselves or someone they are caring for. Although the causes and location of the mobility issues from multiple myeloma may be slightly different than your wife's, they may have some similar experiences and concerns as you.

@kandc317, did you and your wife discuss the potential for decreasing or altering the chemo treatments so that she could gain strength in her legs back? Did they think this was a plausible compromise, were the treatments set to be the same regimen for the foreseeable future or are her current treatments to get the myeloma under control in the short-term?

Jump to this post

Sorry for the delay in responding! My MM specialist is continuing my high dose of Kyprolis IV, Pomalyst by mouth, and Dexamethasone (IV x3 weeks, by mouth 1 week). I believe this is because of my Bone lesion progression in October, 2019, after 4 rounds of RVD. My MM Specialist told me that the Dexamethasone will cause muscle weakness and muscle wasting.
I have gained weight, also due to Dexamethasone, which has not helped.
I tire very easily. I have gotten progressively weaker since starting treatment last summer. I do small tasks and rest in between. I nap nearly every day. I feel that stopping my bone damage from MM is more important right now than running a marathon. I do leg exercises, and have started beginner tai chi on You Tube. I am afraid of falling/fractures, so this exercise seems safer and gets me moving. I hope this helps.

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Hello kandc317! Thank you, Justin McClanahan, for the invite. Sorry for the delay. And I am so sorry you and your wife are having such a difficult time! Did they do any repeat x-rays/ct's on your wife's spine? And how are her MM lab numbers, such as M-Spike, Kappa/Lambda light chains/ratio, Immunofixation, and immunoglobulins? This would a factor in her treatment plan. I would talk to her oncologist. Does she have a MM specialist? This is a hematologist/oncologist, that specializes in MM, which is a fairly rare blood cancer. They usually work with a local oncologist, and help direct the plan of treatment. Also, is she on an anti viral med like Valtrex or Aclovier? If not, I would ask her Hematologist about it. I have been on this since my 1st chemo. treatment. It is to prevent Shingles. Is she on any treatment for shingles? Learn all you can about MM. It is a complicated cancer, and it appears that every patient with MM is different, to some degree. I have learned to be my own advocate with my disease. Good communication with her doctor is important, as well, so don't be afraid to ask him questions. I write my questions down before my appointment, and go over them with my doctor. I hope her skin issues improve, and that Physical Therapy continues to assist her to regain her strength! It is good that her appetite is improving, which may help her skin issues and her strength, so encourage her to eat! I hope this helps! Best wishes to you both!

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