Your myeloma has progressed with back lesions causing weakness and pain. Radiation is appropriate. I would also seek neurosurgical assistance. If there are fractures and/or destroyed vertebral bodies, they will be able to provide support (whether via surgery or a day procedure termed kyphoplasty) depending on the degree of damage.
Pain management will be very important for you. Narcotics are important (long and short acting). Further, as stated above kyphoplasties can be extremely important in the resolution of pain.
I cannot speak to why you will only take medications that are oral or other issues that may get in the way of therapy. But you live in a time when we have more options than ever to make this disease as chronic as possible, I would like to have all options available to you. If you had a difficult time with Rev it will not be easier this time. Velcade can be given under the skin with the same efficacy asa IV (and with less neuropathy). Carfilzomib (Kyprolis) is only IV, but it would be a shame to not utilize all the medications available. pomalidomide (Pomalyst) was just apporved by the US FDA (an oral cousin of Revlimid and Thalidomide).
With that degree of bone disease Zometa or other bisphosphonates are important as well. I would make sure that you do what you can with a dentist to determine if these okay for you.
We wish you the best of luck and please keep us informed.
Forums
Re: Back & muscle pain
Went for my set up for radiation today. Start first treatment tomorrow. Everyone is very nice at the radiation center, and have made me feel very comfortable about having this done. I will have 8 treatments and they said I should have no side effects. thanks for all of you being so supportive. Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Back & muscle pain
so finished my radiation on 3/11. By the 2nd day of radiation the pain in my mid back was 10x worse than it had ever been, didn't let up at all, didn't sleep but 1-2 hrs a night for crying and screaming so much from the pain. My radiation doctor put me on morphine for 10 days with the Vicodin to get through the treatments. He said he couldn't understand why I was having so much pain that most people feel relief by the 3rd treatment, my pain just kept getting worse. It's still not all gone but letting up some. I can be farely good one day and full blown pain the next.
I seen my oncologist today 3/15, he has put me on Duragesic (Fentanyl Transdermal Patch) with the Vicodin for the next 15 days to see if that will help.
I am hoping this pain will finally let up because to go to this kind of pain when the pain was tolerable is horrible. I could not live like this from day to day for the rest of my life.
Any suggestions as to why this happened with all this pain?
Radiaiton doctor said I could be one that it will not help.
Thanks, Nancy
I seen my oncologist today 3/15, he has put me on Duragesic (Fentanyl Transdermal Patch) with the Vicodin for the next 15 days to see if that will help.
I am hoping this pain will finally let up because to go to this kind of pain when the pain was tolerable is horrible. I could not live like this from day to day for the rest of my life.
Any suggestions as to why this happened with all this pain?
Radiaiton doctor said I could be one that it will not help.
Thanks, Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Back & muscle pain
Back again. Had a bone marrow biopsy on 4/12, got results today. Saw my oncologist today and will be starting Velcade next week and then Revlimid. About the low back pain when I opened the frozen car door, well it never fully healed and it went out again last Sunday, so have been in horrible pain again and can barely get around again. He also got me a rollator walker as I am very weak in the legs and low back from the pain. He believes the low back pain in from the multiple myeloma, not muscle pain like my chiropractor thinks, will be getting xrays on this tomorrow.
Little scared about starting the Velcade and some of the side effects but I told him I would try it. Had reactions to the Revlimid 4 yrs ago and had to be taken off of it but it was 25mg and he is going to start with 5mg this time.
I appreciate all your replies from earlier, its nice to have someone to talk to if you need it, my family does not like to talk about it because they say it worries them all the time that I may die and they can't talk to me about it. But I do have some wonderful co workers where I work, there are only 15 of us at Catholic Charities and many of them have a family member with some type of cancer, so we all have someone to share with and comfort each other.
Thank you all for being there. Nancy
Little scared about starting the Velcade and some of the side effects but I told him I would try it. Had reactions to the Revlimid 4 yrs ago and had to be taken off of it but it was 25mg and he is going to start with 5mg this time.
I appreciate all your replies from earlier, its nice to have someone to talk to if you need it, my family does not like to talk about it because they say it worries them all the time that I may die and they can't talk to me about it. But I do have some wonderful co workers where I work, there are only 15 of us at Catholic Charities and many of them have a family member with some type of cancer, so we all have someone to share with and comfort each other.
Thank you all for being there. Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Back & muscle pain
Hi Nancy 524, This was not immediate relief for my fractures of several vertebrae, but over time the bisphosphonate bone building treatment (aredia in my case but zometa is another one ), plus the eradication of the cancer cells, did allow my bones to heal. I also took Velcade plus dexamethasone for the induction chemo, and took bone building meds for more than two years. It all helped...good luck to you!! (These meds were given by IV but that didn't bother me much!)
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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: Back & muscle pain
This is the most disconcerting and frustrating issue associated with multiple myeloma....the inability to predict the future, return to work and alleviate the pain from side issues linked to multiple myeloma.
More needs to be done to assist people whose lives have been turned upside down by the cancer, then have extended time out of their workplaces due to back pain or rib issues.
The financial stress is crippling, the emotional stress is damning and the answers are very rarely helpful other than taking painkillers.
Pain management still has a hit and miss culture that can leave many people floating in a limbo unable to work, looking ok but in constant pain from multiple myeloma.
Morphine won't pay the bills, and the challenge to take the handcuffs off and help these people back into the community.
My last work day was 2 years ago and as a 55 yo guy, it's doing my head in each and every time I attend my treating hospital and walk out with a fresh new jar of pills, a smile and a see you next time.
More needs to be done to assist people whose lives have been turned upside down by the cancer, then have extended time out of their workplaces due to back pain or rib issues.
The financial stress is crippling, the emotional stress is damning and the answers are very rarely helpful other than taking painkillers.
Pain management still has a hit and miss culture that can leave many people floating in a limbo unable to work, looking ok but in constant pain from multiple myeloma.
Morphine won't pay the bills, and the challenge to take the handcuffs off and help these people back into the community.
My last work day was 2 years ago and as a 55 yo guy, it's doing my head in each and every time I attend my treating hospital and walk out with a fresh new jar of pills, a smile and a see you next time.
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Alan
Re: Back & muscle pain/Kyphoplasy
I started my first chemo treament (Velcade) and Revlimid on Tuesday. So far just had a little nausea with it. I also found out from recent xrays that on the low back pain I spoke of in the earlier posts, I have some disc narrowing on L4-5 and L5-S1 and some deformity on L1 that were not there on the previous xray in Aug 2012 and more compression fractures on T12 not present earlier. Report also shows a 1 cm lucency in the right lieum of the right sacroiliac joint that was not present before. My doctor has talked to me about kyphoplasty and I said no, I am now considering it if it will help me with this low back pain. As of now I am using a cane and he got me a rollator walker to help get around as the pain is really bad and have had a very difficult time getting around.
Has anyone had this surgery and did it help you? I would appreciate any in put on this.
Thanks, Nancy
Has anyone had this surgery and did it help you? I would appreciate any in put on this.
Thanks, Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
17 posts
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