Hello again everyone,
I am coming to grips with the cancer and now, in my second cycle of chemo, am getting used to that.
The big question I have is: What about my fractured / collapsed vertebra, my scoliosis, the lesions and bone destruction from the tumours? These are the things keeping me off work, these are the things that, unless fixed, will prevent me from returning to work. These are the things that cannot be touched until I have completed one or two stem cell transplants.
I have been told that the fractured vertebra may be able to be cemented and expanded, but also that this procedure has been known to cause chronic, debilitating pain. Also I have been told that the bone protrusions that stabilise the spine have been destroyed on a couple of my vertebra and that, without them, I will be in pretty much constant danger of further spinal injury. I am also being observed as there is a level of concern that, as the tumours shrink, more vertebra may collapse as the tumour may be the only thing holding them together.
I am actually starting to wonder if I am in actual fact permanently disabled by the bone damage and will not be able to make a satisfactory recovery, irrespective of what happens with the cancer. I am off work for at least six months at this point and have contacted the local university to investigate study options to keep my brain ticking over but to also help me move to a less physically demanding role if the bones can't be fixed.
I am too young to retire but have always worked in hands on para-professional roles and feel that I may need to move into a desk job ASAP, i.e. be the design or drafting bloke instead of the test, configuration or quality bloke.
It all comes down to the bones and the level of recovery I can expect. I am clueless and the specialists are only really interested in the cancer, not what needs to be done for the bones. I have an appointment with the orthopaedic team end of May, but I thought I should start my research now.
Thanks in advance.
Forums
-
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?
Hi Paul,
I am very sorry to hear of your bone damage and issues with the myeloma. You didn't say it in your post, but I imagine you are receiving bisphosphonate treatments for bone strengthening, such as Aredia [pamidronate or Zometa [zoledronic acid]? Those helped me a lot to strengthen my bones, but it was a gradual process, and nobody really expected me to do much in the way of physical work while my bones were healing.
I did not require surgery, so don't have any experience of that to share.
Best wishes!
I am very sorry to hear of your bone damage and issues with the myeloma. You didn't say it in your post, but I imagine you are receiving bisphosphonate treatments for bone strengthening, such as Aredia [pamidronate or Zometa [zoledronic acid]? Those helped me a lot to strengthen my bones, but it was a gradual process, and nobody really expected me to do much in the way of physical work while my bones were healing.
I did not require surgery, so don't have any experience of that to share.
Best wishes!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is my bone damage permanent?
Hi Paul,
I am very sorry to hear of your bone damage and issues with the myeloma. Since I haven't had extreme bone involvement that you have had, I cannot imagine what you must be going through.
I too am receiving bisphosphonate treatments for bone strengthening with Zometa, which I think has greatly helped with my bone strengthing. I had a compression fracture of my T10 vertabra back in December of 2010 and then in February 2011 was given the diagnosis of multiple myeloma with a plasmacytoma and bone marrow comprised of 35% plasma cells.
I initially had radiation of the fracture/tumor area, which significantly reduced my pain level. Once the radiation was completed, I went through 6 cycles of VRD [Velcade-Revlimid-dexamethasone] before I started my course of treatment to prepare for my stem cell transplant in November 2011. I was finally able to have kyphoplasty performed in March of 2012 and it was instant pain reduction.
I've done really well since then and am currently on a Revlimid maintenance of 10 mg. I was fortunate in finding a wonderful doctor with the Massachusetts General Hospital in Boston MA, who specialized in tumors of the spine. He then recommended my transplant oncologist and I have had a great relationship with my team there. I live in Connecticut, but it is not that big a deal to have to drive the 2-hours into Boston for my 6 month checkups, etc.
It is important to find a doctor that you are comfortable with and confident in. It has made all the difference in my treatment. Good luck with your continued recovery and I hope you reach a level of comfort that you feel makes a difference in your life. The road has not been easy for any of us, but it sure beats the alternative. All the best!
Lisa
I am very sorry to hear of your bone damage and issues with the myeloma. Since I haven't had extreme bone involvement that you have had, I cannot imagine what you must be going through.
I too am receiving bisphosphonate treatments for bone strengthening with Zometa, which I think has greatly helped with my bone strengthing. I had a compression fracture of my T10 vertabra back in December of 2010 and then in February 2011 was given the diagnosis of multiple myeloma with a plasmacytoma and bone marrow comprised of 35% plasma cells.
I initially had radiation of the fracture/tumor area, which significantly reduced my pain level. Once the radiation was completed, I went through 6 cycles of VRD [Velcade-Revlimid-dexamethasone] before I started my course of treatment to prepare for my stem cell transplant in November 2011. I was finally able to have kyphoplasty performed in March of 2012 and it was instant pain reduction.
I've done really well since then and am currently on a Revlimid maintenance of 10 mg. I was fortunate in finding a wonderful doctor with the Massachusetts General Hospital in Boston MA, who specialized in tumors of the spine. He then recommended my transplant oncologist and I have had a great relationship with my team there. I live in Connecticut, but it is not that big a deal to have to drive the 2-hours into Boston for my 6 month checkups, etc.
It is important to find a doctor that you are comfortable with and confident in. It has made all the difference in my treatment. Good luck with your continued recovery and I hope you reach a level of comfort that you feel makes a difference in your life. The road has not been easy for any of us, but it sure beats the alternative. All the best!
Lisa
-
Anonymous Today
Re: Is my bone damage permanent?
Paul,
Regarding:
"I have been told that the fractured vertebra may be able to be cemented and expanded but also that this procedure has been known to cause chronic, debilitating pain..."
It sounds like you are referring to kyphoplasty. A lot of of folks on this forum have had this procedure done with apparently very good success (and pain relief).
You obviously want to seek out a top notch doctor if you want to consider this procedure.
Regarding:
"I have been told that the fractured vertebra may be able to be cemented and expanded but also that this procedure has been known to cause chronic, debilitating pain..."
It sounds like you are referring to kyphoplasty. A lot of of folks on this forum have had this procedure done with apparently very good success (and pain relief).
You obviously want to seek out a top notch doctor if you want to consider this procedure.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is my bone damage permanent?
From what I have gathered because of my own skeletal problems, any improvement from Zometa will be slow in coming -- if at all. It seems that experience ranges from some who have bone replacement to those who only have a halt to disintegration.
If I were you, I would be looking for that desk, just to be safe.
If I were you, I would be looking for that desk, just to be safe.
-
Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Is my bone damage permanent?
Thanks for the replies everyone.
Yes, I am on Zometa, only two treatments so far so early days. Good to hear the kyphoplasty is generally so successful. That is a relief so I will now look forward to it. My SCT has do be done interstate so the plan is for me to stay on for any orthopaedic work. I am just not sure what they will do an how long it will take, let alone the expected outcomes.
Again, early days. Thanks again everyone.
Yes, I am on Zometa, only two treatments so far so early days. Good to hear the kyphoplasty is generally so successful. That is a relief so I will now look forward to it. My SCT has do be done interstate so the plan is for me to stay on for any orthopaedic work. I am just not sure what they will do an how long it will take, let alone the expected outcomes.
Again, early days. Thanks again everyone.
-
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?
Hi, I'm in Australia too, with multiple myeloma since 2010. My lesions on the sternum were solved with radiation, and the Revlimid I'm still on helps a little.
The bone pain around the site, and in other spots, still gives me grief every day. No work since 2011 and now on disability.
My numbers are all low, but the pain each day is a killer. Endone [oxycodone] and morphine do the trick. Hips, legs, ribs, and back all giving me trouble.
Hospital in Perth not sure what to do, but I am managing virtually on our own here at home. Not even support from any group.
I'm told that I should be feeling ok, but I wait for some relief from Zometa or Revlimid. Not forthcoming I'm afraid.
All the best.
The bone pain around the site, and in other spots, still gives me grief every day. No work since 2011 and now on disability.
My numbers are all low, but the pain each day is a killer. Endone [oxycodone] and morphine do the trick. Hips, legs, ribs, and back all giving me trouble.
Hospital in Perth not sure what to do, but I am managing virtually on our own here at home. Not even support from any group.
I'm told that I should be feeling ok, but I wait for some relief from Zometa or Revlimid. Not forthcoming I'm afraid.
All the best.
-
Bones
Re: Is my bone damage permanent?
It's been 18 months since I had my hip radiated. Had a stem cell transplant and am on Revlimid maintenance currently. My hip still gives me pain, but not nearly as bad as 18 months ago. I do not take pain meds to avoid addiction and further chemo brain that I suffer from currently. I'm an engineer and the chemo brain has been causing me the most difficulty.
To be perfectly honest, I think you can expect some long-term bone issues.
To be perfectly honest, I think you can expect some long-term bone issues.
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Is my bone damage permanent?
Paul - You should contact the Leukaemia Foundation, as they have support meetings for myeloma patients throughout each state in Australia. Also, National Myeloma Day is coming up in May (not sure where you live) but it will be around mid May. They have guest haematologist talking on latest treatment and you will also have the opportunity to ask questions.
I also have bone damage (although I am 66, diagnosed 4 years ago). I really don't think there is much you can do about damage already done. However, further damage can be prevented with Zometa and your medical regimen.
Good luck.
I also have bone damage (although I am 66, diagnosed 4 years ago). I really don't think there is much you can do about damage already done. However, further damage can be prevented with Zometa and your medical regimen.
Good luck.
-
Elena - Name: Elena
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 62
Re: Is my bone damage permanent?
Hi don't know if I'll be much help to you, but I'll tell you what I know.
I was diagnosed in 2004 and have lost 4" in height due to fractures and the like to my spine. The multiple myeloma is temporary halted, but it appears as if several of my lower spine vertebrae have fused themselves together as my flexibility is severely reduced. There's not a lot of pain unless I stand for a period of time.
I was on Zometa for about 3 or 4 months, then taken off as I needed dental work. I have never returned to the Zometa - I don't ever expect my spine to be normal again, as I have been dealing with this for about 10 years now. My main hope is that it does not worsen. I am currently taking no medication for the multiple myeloma, but do use anti inflammatory drugs such as salsalate [Disalcid, Salsitab, Mono-Gesic] (which has increased in price from $20 for a 3 months supply to over $700 for the same number of pills, thanks to our current government's inept policies).
I read yesterday about the oldest woman (115) who recently passed, and they discovered that most of the remaining white cells in her body were being produced by only (2) two stem cells of the thousands she had originally and they are thinking that her body's ability to replace itself was a key factory in her longevity. This thought process does not bode well for those of us with defective bone marrow as far as reaching the century mark goes .
I was diagnosed in 2004 and have lost 4" in height due to fractures and the like to my spine. The multiple myeloma is temporary halted, but it appears as if several of my lower spine vertebrae have fused themselves together as my flexibility is severely reduced. There's not a lot of pain unless I stand for a period of time.
I was on Zometa for about 3 or 4 months, then taken off as I needed dental work. I have never returned to the Zometa - I don't ever expect my spine to be normal again, as I have been dealing with this for about 10 years now. My main hope is that it does not worsen. I am currently taking no medication for the multiple myeloma, but do use anti inflammatory drugs such as salsalate [Disalcid, Salsitab, Mono-Gesic] (which has increased in price from $20 for a 3 months supply to over $700 for the same number of pills, thanks to our current government's inept policies).
I read yesterday about the oldest woman (115) who recently passed, and they discovered that most of the remaining white cells in her body were being produced by only (2) two stem cells of the thousands she had originally and they are thinking that her body's ability to replace itself was a key factory in her longevity. This thought process does not bode well for those of us with defective bone marrow as far as reaching the century mark goes .
-
Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
25 posts
• Page 1 of 3 • 1, 2, 3