It was the recent realisation that it is the bone damage, not the other factors of the disease, that has me off work. The pain was a major factor, but that is fortunately under control now. The big issue is the spinal damage and instability.
If the bones are not going to get better, I am going to have to investigate disability and possibly even the Total Permanent Disability cover in my superannuation. Its a big thing to be considering at 44, but it may be the only choice I have if I cannot make arrangements for a safe return to work post transplant.
On a different tack, is it just me or are there a disproportionate number of people from engineering backgrounds suffering from multiple myeloma in Australia? It seems to have come up as an occupation in the forums quite a few times, and I have worked in engineering as a para-professional / technical officer / technician for over two decades.
Almost got to wonder if there is some common thread in there somewhere -- radiation, chemicals etc. Where would you start, how would you investigate this, to determine if there is something?
Forums
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Is my bone damage permanent?
I was diagnosed with multiple myeloma in 2004. At that time, I had a compression fracture of T5. I was treated with radiation, but it was no help to me. At this point, I went to another doctor who had more experience in the treatment of multiple myeloma. He would have had me get kyphoplasty, but said we had to wait for the radiation to settle down.
I had been on Zometa with the first doctor. The second doctor changed me to Aredia, which I received every month for two years. After that, I received it every six months. I now receive Aredia every three months.
I had kyphoplasty August of 2004. It gave me immediate relief and, if necessary, I would do it again. I have not had a stem cell transplant and don't think I'd be eligible for one at this point in time. My myeloma is now in very good partial remission. I had other bone problems (2 ribs broke when I sneezed) -- that was also in 2004. They healed completely. I thank Zometa and Aredia for that.
I hope the bone strengthener will help you. I am not pain free, but do not take any pain medicine as it makes me feel sick. Hope this is of some help to you and wish you luck.
I had been on Zometa with the first doctor. The second doctor changed me to Aredia, which I received every month for two years. After that, I received it every six months. I now receive Aredia every three months.
I had kyphoplasty August of 2004. It gave me immediate relief and, if necessary, I would do it again. I have not had a stem cell transplant and don't think I'd be eligible for one at this point in time. My myeloma is now in very good partial remission. I had other bone problems (2 ribs broke when I sneezed) -- that was also in 2004. They healed completely. I thank Zometa and Aredia for that.
I hope the bone strengthener will help you. I am not pain free, but do not take any pain medicine as it makes me feel sick. Hope this is of some help to you and wish you luck.
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Ellie (age 74)
Re: Is my bone damage permanent?
I was diagnosed in December 2012. At that time, I had severe osteoporosis, large stones in both kidneys from circulatory calcium due to bone destruction, and in total I have broken 6 ribs, 2 toes and a T6 compression fracture. I have tumors all along my sternum, collar bone and down my spine.
My myeloma at diagnosis was very aggressive and my oncologist suggested addressing the cancer first and worrying about the bone damage once things were more stable. I had an autologous stem cell transplant in May 2013 and am now in two years of Velcade maintenance therapy (I am severely allergic to Revlimid). I’d just had my wisdom teeth removed just prior to diagnosis so I wasn’t approved to start Zometa until September 2013. So far I haven’t had a scan to get any kind of measurable result.
In August 2013, I had kyphoplasty for the T6 compression fracture. I’d held great hopes for the procedure, as I’d spoken to several others who had had it done, two using the same neurosurgeon as I did, and they’d all described instantaneous relief. Unfortunately, my experience was not the same, and my pain is actually worse following the procedure. A follow up MRI revealed that the degree of compression was 80%, the same as prior to the procedure.
I tried physical therapy but it didn’t help. I was referred to a pain management specialist. Fentanyl and oxycodone help me manage the pain somewhat, although in addition to residual chemo brain from the transplant melphalan, I have difficulty with concentration and organizing thoughts. I am now considering acupuncture for potential non-pharmaceutical relief, and will visit an orthopedic center for a second opinion.
Interesting, your comment about engineering fields and myeloma. Prior to going to medical school, my hematologist oncologist was a petrochemical engineer and is now well aware of the association between chemical exposure and myeloma. Our area is ripe with chemical engineering companies, and he said it didn’t take long to make the association between the patient diagnoses and their occupation. I had worked as a technician in R&D prior to diagnosis, and after transplant he told me – his words – “there’s no way in h*** I’d go back to that job if I were you”. My employer was completely unwilling to move me to any other position, so I felt I had no option but to quit. I am now on full disability at age 53.
I believe Aredia and Zometa can strengthen bones but cannot repair existing damage. It seems most people who have it benefit from kyphoplasty, and I hope it works for you as well. But there are some of us who, despite our best efforts, struggle with pain every day. I am mom to a 9 year old, and I regret that I cannot fully be the parent to her that I wish to be.
Best of luck to you!
My myeloma at diagnosis was very aggressive and my oncologist suggested addressing the cancer first and worrying about the bone damage once things were more stable. I had an autologous stem cell transplant in May 2013 and am now in two years of Velcade maintenance therapy (I am severely allergic to Revlimid). I’d just had my wisdom teeth removed just prior to diagnosis so I wasn’t approved to start Zometa until September 2013. So far I haven’t had a scan to get any kind of measurable result.
In August 2013, I had kyphoplasty for the T6 compression fracture. I’d held great hopes for the procedure, as I’d spoken to several others who had had it done, two using the same neurosurgeon as I did, and they’d all described instantaneous relief. Unfortunately, my experience was not the same, and my pain is actually worse following the procedure. A follow up MRI revealed that the degree of compression was 80%, the same as prior to the procedure.
I tried physical therapy but it didn’t help. I was referred to a pain management specialist. Fentanyl and oxycodone help me manage the pain somewhat, although in addition to residual chemo brain from the transplant melphalan, I have difficulty with concentration and organizing thoughts. I am now considering acupuncture for potential non-pharmaceutical relief, and will visit an orthopedic center for a second opinion.
Interesting, your comment about engineering fields and myeloma. Prior to going to medical school, my hematologist oncologist was a petrochemical engineer and is now well aware of the association between chemical exposure and myeloma. Our area is ripe with chemical engineering companies, and he said it didn’t take long to make the association between the patient diagnoses and their occupation. I had worked as a technician in R&D prior to diagnosis, and after transplant he told me – his words – “there’s no way in h*** I’d go back to that job if I were you”. My employer was completely unwilling to move me to any other position, so I felt I had no option but to quit. I am now on full disability at age 53.
I believe Aredia and Zometa can strengthen bones but cannot repair existing damage. It seems most people who have it benefit from kyphoplasty, and I hope it works for you as well. But there are some of us who, despite our best efforts, struggle with pain every day. I am mom to a 9 year old, and I regret that I cannot fully be the parent to her that I wish to be.
Best of luck to you!
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Stitcher88 - Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2012
- Age at diagnosis: 51
Re: Is my bone damage permanent?
I think when the future unfolds the mystery of multiple myeloma, chlorine will feature. I am the proud owner of a pool, shovelling in chlorine daily. For 22 years! 2011, multiple myeloma knocks on my door and now, every time I service the pool, I look at the stuff and wonder.
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Bones
Re: Is my bone damage permanent?
There has to be a myeloma trigger, I am not willing to accept the random occurrance argument either.
I have spent 40 years at work in the mechanical engineering industry mostly in and around machine shops and fabrication shops, with the last 8 years before diagnosis spent working as a boilermaker/ welder. If ever there was an unhealthy occupation it's welding, as breathing smoke and toxic fumes are inevitable however hard one tries to minimize exposure. I am surprised there are not more spray painters diagnosed as well which involves a lot of solvents and paint thinners.
Perhaps this would be a good topic for a weekly poll 'In which industry were you employed before diagnosis?'.
Let us hope there will be progress on new bisphosphonates as well, less side effects, more strengthening and in pill form. Good luck with your journey everyone.
I have spent 40 years at work in the mechanical engineering industry mostly in and around machine shops and fabrication shops, with the last 8 years before diagnosis spent working as a boilermaker/ welder. If ever there was an unhealthy occupation it's welding, as breathing smoke and toxic fumes are inevitable however hard one tries to minimize exposure. I am surprised there are not more spray painters diagnosed as well which involves a lot of solvents and paint thinners.
Perhaps this would be a good topic for a weekly poll 'In which industry were you employed before diagnosis?'.
Let us hope there will be progress on new bisphosphonates as well, less side effects, more strengthening and in pill form. Good luck with your journey everyone.
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Is my bone damage permanent?
Paul,
I am sorry you have to deal with these issues and I hope things start to turn around for you.
I have had five compression fractures. Four of them occurred a few months after treatment started. During that same time period I had three vertebraplasties and two kyphoplasties. They did help stabilize the vertebraes and lessen the pain. I also started zometa and RVD chemo at the same time and had a auto SCT six months after my diagnosis. As another writer noted, it is a process in terms of getting relief and no single thing resulted in immediate significant relief but they all helped. I have had no problems caused by the surgery. Early in my treatment I was on a heavy course of pain killers. Now, 3 1/2 years after diagnosis my need for pain relief meds is markedly reduced despite the fact that my spine as described by my primary care doctor "is a mess."
My understanding is that areas within which the bone has been destroyed and replaced my tumor cells remain damaged. The bone does not get replaced though I think there is work being done to find a drug that will encourage bone growth in damaged areas.
What I do not understand is why they are waiting to do a kyphoplasty. I was told you want to do it as soon as possible after the fracture to have the best chance of a good result. Also, as noted I had them while I was in chemo therapy so I do not understand why that is a reason to hold off. Hopefully you are also getting a bio phosphates to stave off further breakage.
While of course everyone's situation is different I would also encourage you to think about changing your career path to something less physical.
You may want to check with the International Myeloma Foundation as another resource to see if there is a support group in your area. The support group I attend is a great place to find out what does and does not work re. treatment.
Best of Luck to you,
Tom
I am sorry you have to deal with these issues and I hope things start to turn around for you.
I have had five compression fractures. Four of them occurred a few months after treatment started. During that same time period I had three vertebraplasties and two kyphoplasties. They did help stabilize the vertebraes and lessen the pain. I also started zometa and RVD chemo at the same time and had a auto SCT six months after my diagnosis. As another writer noted, it is a process in terms of getting relief and no single thing resulted in immediate significant relief but they all helped. I have had no problems caused by the surgery. Early in my treatment I was on a heavy course of pain killers. Now, 3 1/2 years after diagnosis my need for pain relief meds is markedly reduced despite the fact that my spine as described by my primary care doctor "is a mess."
My understanding is that areas within which the bone has been destroyed and replaced my tumor cells remain damaged. The bone does not get replaced though I think there is work being done to find a drug that will encourage bone growth in damaged areas.
What I do not understand is why they are waiting to do a kyphoplasty. I was told you want to do it as soon as possible after the fracture to have the best chance of a good result. Also, as noted I had them while I was in chemo therapy so I do not understand why that is a reason to hold off. Hopefully you are also getting a bio phosphates to stave off further breakage.
While of course everyone's situation is different I would also encourage you to think about changing your career path to something less physical.
You may want to check with the International Myeloma Foundation as another resource to see if there is a support group in your area. The support group I attend is a great place to find out what does and does not work re. treatment.
Best of Luck to you,
Tom
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Is my bone damage permanent?
I've had lesions and tumors all over my spine, including a malignant tumor growing out of sacral the bone. Fractures under tumors, even lesions on skull covering.
They wanted to put cement between vertebrae. Neurosurgeon said no -- only if 2 were compressed, and they weren't.
Radiation and chemo seemed to clear matters up. If I watch it I'm no longer in back pain. Just kinda baby my back.
They wanted to put cement between vertebrae. Neurosurgeon said no -- only if 2 were compressed, and they weren't.
Radiation and chemo seemed to clear matters up. If I watch it I'm no longer in back pain. Just kinda baby my back.
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Madison
Re: Is my bone damage permanent?
Bone disease is a very difficult aspect of myeloma. And it frequently is associated with a lot of morbidity - especially fractures. Myeloma bone disease is one of the major reasons that myeloma care is so multidisciplinary, requiring orthopedics, neurosurgeons, and pain management.
Kyphoplasties are an excellent procedure to reduce pain from compression fractures and I would recommend them for all myeloma patients in that setting. If you are in pain from compression fractures, whether 1 or 2, you should request such a procedure.
Regarding regression of bone lesions, that is much more difficult. Some lesions will disappear with appropriate bone health and treatment (anti-myeloma, bisphosphonates, calcium and vitamin D). However, some will not. Fractures and fracture-associated pain can be very difficult and chronic in nature. This is why it is important to see physicians with experience with myeloma to help you find the correct supportive care to maximize your quality of life while we (the oncologists) control your disease.
Kyphoplasties are an excellent procedure to reduce pain from compression fractures and I would recommend them for all myeloma patients in that setting. If you are in pain from compression fractures, whether 1 or 2, you should request such a procedure.
Regarding regression of bone lesions, that is much more difficult. Some lesions will disappear with appropriate bone health and treatment (anti-myeloma, bisphosphonates, calcium and vitamin D). However, some will not. Fractures and fracture-associated pain can be very difficult and chronic in nature. This is why it is important to see physicians with experience with myeloma to help you find the correct supportive care to maximize your quality of life while we (the oncologists) control your disease.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Is my bone damage permanent?
Thank you again for the replies everyone and I wish you all the best in your personal battles with this disease.
My latest bloods are in and after one cycle of VCD my reading shows a massive improvement. Not sure what these readings are or how they compare to M spike, but they have dropped from an already low 495 to 4 (maybe a PPM reading of some sort) and, as a result, my stem cell transplant has been brought forward to June / July.
Orthopaedic work on my spine to follow in August and then hopefully back to a normal life. 6 months go to woe, what a roller coaster, here's hoping for a long remission.
Only just coming to terms with what it all means and I'm now getting ready for the next step, fingers crossed.
My latest bloods are in and after one cycle of VCD my reading shows a massive improvement. Not sure what these readings are or how they compare to M spike, but they have dropped from an already low 495 to 4 (maybe a PPM reading of some sort) and, as a result, my stem cell transplant has been brought forward to June / July.
Orthopaedic work on my spine to follow in August and then hopefully back to a normal life. 6 months go to woe, what a roller coaster, here's hoping for a long remission.
Only just coming to terms with what it all means and I'm now getting ready for the next step, fingers crossed.
Last edited by Paul H on Fri May 02, 2014 4:25 pm, edited 5 times in total.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Is my bone damage permanent?
Dr. Ken Shain wrote:Bone disease is a very difficult aspect of myeloma. And it frequently is associated with a lot of morbidity - especially fractures. Myeloma bone disease is one of the major reasons that myeloma care is so multidisciplinary, requiring orthopedics, neurosurgeons, and pain management.
Kyphoplasties are an excellent procedure to reduce pain from compression fractures and I would recommend them for all myeloma patients in that setting. If you are in pain from compression fractures, whether 1 or 2, you should request such a procedure.
Regarding regression of bone lesions, that is much more difficult. Some lesions will disappear with appropriate bone health and treatment (anti-myeloma, bisphosphonates, calcium and vitamin D). However, some will not. Fractures and fracture-associated pain can be very difficult and chronic in nature. This is why it is important to see physicians with experience with myeloma to help you find the correct supportive care to maximize your quality of life while we (the oncologists) control your disease.
Thank you very much for this post, Dr. Shain, it helped my to ask the questions I needed to ask from the team. They weren't aware of what I didn't know so it has been a great help having the responses here to help me frame my questions.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
25 posts
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