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Re: lesions
I presented with a t5 compression fracture which was identified in an MRI. Radiation was begun immediately to shrink the tumor and this was very successful. This happened this past January. The tumor apparently was pressing against the spinal cord because I have had some loss of sensation in my lower legs. I am able to walk short distances with little trouble but longer distances are difficult and running virtually impossible. Some of the sensation seemed to come back after the radiation was started. Is this a fairly common complaint and how likely is it that I will regain sensation?
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Mike M - Name: Mike M
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 4th 2011
- Age at diagnosis: 51
Re: lesions
So,
Is the doctor saying that myeloma lesions do not change even with treatments. So why have I been told that the reason they consider my lesions stable is because they DID NOT GROW???
Is the doctor saying that myeloma lesions do not change even with treatments. So why have I been told that the reason they consider my lesions stable is because they DID NOT GROW???
Re: lesions
Thanks, Dr. Libby. My Doctor told me that my lesions would take up to a year to heal. 10 months after beginning treatment I have two 4-5mm lesions on my right shin that have NOT healed. In fact, I have aching there that was not there 2 months ago. We are pursuing this as I type.
On April 25th I was diagnosed in "Stringent Complete Remission" with zero plasma cells. This was following a SCT on January 11, 2012. I was in complete remission following one round of Velcade, Cytoxin, and Dex. We completed one more round before Apherisis.
Also, at the end of my induction therapy we were involved in an auto accident in October, which resulted in a fractured right collarbone. This was considered healed during a PET scan analysis 6 months following the accident.
Zometa causes me much discomfort, re. cancer like bone aches. We skipped the May treatment and all was well. We resumed in June and I've been feeling bone aches every day. Once again my Doctor has order me to suspend Zometa. We plan to discuss other options at my next appointment.
Are other bone strengtheners likely to cause the same discomfort? Does it makes sense to take Tramadol in order to be able to tolerate the Zometa and thus reap the benefits of the drug?
In your experience, do you have any patients that see a reduction/elimination in the size of the lesions?
On April 25th I was diagnosed in "Stringent Complete Remission" with zero plasma cells. This was following a SCT on January 11, 2012. I was in complete remission following one round of Velcade, Cytoxin, and Dex. We completed one more round before Apherisis.
Also, at the end of my induction therapy we were involved in an auto accident in October, which resulted in a fractured right collarbone. This was considered healed during a PET scan analysis 6 months following the accident.
Zometa causes me much discomfort, re. cancer like bone aches. We skipped the May treatment and all was well. We resumed in June and I've been feeling bone aches every day. Once again my Doctor has order me to suspend Zometa. We plan to discuss other options at my next appointment.
Are other bone strengtheners likely to cause the same discomfort? Does it makes sense to take Tramadol in order to be able to tolerate the Zometa and thus reap the benefits of the drug?
In your experience, do you have any patients that see a reduction/elimination in the size of the lesions?
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Garygw
Re: lesions
My husband was diagnoises on 5/17/12 with multiple myeloma.
He has gone through 2 four sessions of chemo, with on or 2 to go. I REALLY need a support person. He has 5 lesions plus a huge tumor on the back of his head. The brain surgeon was only able to take out half of it.
They hope the chemo will reduce/shrink the rest of it.
Thalimide/steroides...................oh yeah constipation is another issue.
Alicia
He has gone through 2 four sessions of chemo, with on or 2 to go. I REALLY need a support person. He has 5 lesions plus a huge tumor on the back of his head. The brain surgeon was only able to take out half of it.
They hope the chemo will reduce/shrink the rest of it.
Thalimide/steroides...................oh yeah constipation is another issue.
Alicia
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alicia - Who do you know with myeloma?: husband
- When were you/they diagnosed?: may 17 2012
- Age at diagnosis: 55
Re: lesions
Mike M wrote:
> I presented with a t5 compression fracture which was identified in an MRI.
> Radiation was begun immediately to shrink the tumor and this was very
> successful. This happened this past January. The tumor apparently was
> pressing against the spinal cord because I have had some loss of sensation
> in my lower legs. I am able to walk short distances with little trouble but
> longer distances are difficult and running virtually impossible. Some of
> the sensation seemed to come back after the radiation was started. Is this
> a fairly common complaint and how likely is it that I will regain
> sensation?
My husbands doctors say that the sensation will lesson in time. My husbands was pressing on the back of his skull. this is how we found out that he had multiple myeloma, but then they found other leasions on his spine, another on his pelvis and 2 on his rib cage that had 2 ribs.
The brain surgery only got out half of the tumor out................
> I presented with a t5 compression fracture which was identified in an MRI.
> Radiation was begun immediately to shrink the tumor and this was very
> successful. This happened this past January. The tumor apparently was
> pressing against the spinal cord because I have had some loss of sensation
> in my lower legs. I am able to walk short distances with little trouble but
> longer distances are difficult and running virtually impossible. Some of
> the sensation seemed to come back after the radiation was started. Is this
> a fairly common complaint and how likely is it that I will regain
> sensation?
My husbands doctors say that the sensation will lesson in time. My husbands was pressing on the back of his skull. this is how we found out that he had multiple myeloma, but then they found other leasions on his spine, another on his pelvis and 2 on his rib cage that had 2 ribs.
The brain surgery only got out half of the tumor out................
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alicia - Who do you know with myeloma?: husband
- When were you/they diagnosed?: may 17 2012
- Age at diagnosis: 55
Re: lesions
From Myeloma I developed multiple lytic lesions in my T spine, and a slight vertabrat collapse in t7, and a few odd lesions (rib / hip).
I am now two years our of stem cell and in remission. I just finished my two years of Pamidronate, monthly treatments and while on pami I had zero back pain.
A month or so after I stopped taking it I had some back pain in the same Tspine. I got nervous and my doctor ordered an MRI, but all it said was "no acute vertebrate collapse or height loss", did not mention if the lesions were still there or not.
My doctor also said some areas never get fully healed either. (though they are functionally healed). This seems consistent with what I'm feeling. If i sit to long in the car for example the next day I can fee those spots in my back. Or if I sleep on a hard surface (like camping) I feel it in my back the next day.
My Rib and Hip healed up though, never feel those anymore.
I did a bone density test before stopping Pami and it was fine, so we felt it was safe for me to stop. My doctor has said if my back bothers me too much I could go back on the pami, but I would prefer to wait if/when I relapses.
I guess these are the "chronic disease" sides of myeloma And the quality of life issues.
On another note, I was told to limit my activity, (no twisting, heavy lifting, and no yoga, even though I really want to try Yoga!) but i did ignore some of this advice and went out snowboarding again, cycling long distances (had to get my bike adjusted several times to accommodate my back) and I am doing a boot camp type class, though I get the instructor to show me the modified ab exercise so I don't twist my back. Being active again has been very healing for me, and I heard that exercise cuts relapse rates in cancer by about 50%!
As I'v said before I'm pretty young, 34 so I sort of blaze my own trail through things sometimes
I am now two years our of stem cell and in remission. I just finished my two years of Pamidronate, monthly treatments and while on pami I had zero back pain.
A month or so after I stopped taking it I had some back pain in the same Tspine. I got nervous and my doctor ordered an MRI, but all it said was "no acute vertebrate collapse or height loss", did not mention if the lesions were still there or not.
My doctor also said some areas never get fully healed either. (though they are functionally healed). This seems consistent with what I'm feeling. If i sit to long in the car for example the next day I can fee those spots in my back. Or if I sleep on a hard surface (like camping) I feel it in my back the next day.
My Rib and Hip healed up though, never feel those anymore.
I did a bone density test before stopping Pami and it was fine, so we felt it was safe for me to stop. My doctor has said if my back bothers me too much I could go back on the pami, but I would prefer to wait if/when I relapses.
I guess these are the "chronic disease" sides of myeloma And the quality of life issues.
On another note, I was told to limit my activity, (no twisting, heavy lifting, and no yoga, even though I really want to try Yoga!) but i did ignore some of this advice and went out snowboarding again, cycling long distances (had to get my bike adjusted several times to accommodate my back) and I am doing a boot camp type class, though I get the instructor to show me the modified ab exercise so I don't twist my back. Being active again has been very healing for me, and I heard that exercise cuts relapse rates in cancer by about 50%!
As I'v said before I'm pretty young, 34 so I sort of blaze my own trail through things sometimes
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: lesions
Lytic bone lesions are caused indirectly by the myeloma- they increase in the number and activity of osteoclasts (cells the destroy bone) and simultaneously decrease the osteoblasts (cells that make bone). Think of your bones as moth eaten or as Swiss cheese.
Lytic lesions associated with myeloma generally do not disappear with therapy- on occasions they will. This is true regardless of the therapy. This is one of the reasons that drugs like Zometa and Aredia are important in myeloma therapy. These compounds strengthen the bone decreasing skeletal related events- fractures.
When bone lesions are referred to as stable- it is to make the point that they are not growing/becoming larger. This means that your myeloma is under control- a good thing obviously.
Zometa is generally preferred by most myeloma physicians for the treatment of myeloma bone disease. This is for a number of reasons. Aredia (Pamidronate) can also be used and in cases where Zometa tolerance is a serious issue, Aredia can be substituted safely and with good efficacy. For instance, renal failure or bad side effects from Zometa- muscle aches, flu-like symptoms that have significant impact on daily activities.
Pain/numbness and weakness from lesions or even fracture inpacting the spinal cord will generally improve with irradication of the disease (mass causing the problem). Unfortunately, only time will tell if full function/sensation will return. Some patients have complete resolution others do not. This is in part dependent on the time and degree of involvement.
Lytic lesions associated with myeloma generally do not disappear with therapy- on occasions they will. This is true regardless of the therapy. This is one of the reasons that drugs like Zometa and Aredia are important in myeloma therapy. These compounds strengthen the bone decreasing skeletal related events- fractures.
When bone lesions are referred to as stable- it is to make the point that they are not growing/becoming larger. This means that your myeloma is under control- a good thing obviously.
Zometa is generally preferred by most myeloma physicians for the treatment of myeloma bone disease. This is for a number of reasons. Aredia (Pamidronate) can also be used and in cases where Zometa tolerance is a serious issue, Aredia can be substituted safely and with good efficacy. For instance, renal failure or bad side effects from Zometa- muscle aches, flu-like symptoms that have significant impact on daily activities.
Pain/numbness and weakness from lesions or even fracture inpacting the spinal cord will generally improve with irradication of the disease (mass causing the problem). Unfortunately, only time will tell if full function/sensation will return. Some patients have complete resolution others do not. This is in part dependent on the time and degree of involvement.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: lesions
My 72 yr. old sister was diagnosed with multiple myeloma 13 yrs. ago. She had broken her back moving a T.V. Had fusion to 4 t-levels. Had bone marrow transplant. Within 2 yrs. it returned with a vengence. Nearly lost her again. Multiple tumors. She was one of the first on Velcade. Very successful. Had not had any infusions for more than 2 yrs. even tho myeloma cells were seen a year ago and again 3 mos ago.
Rushed to hospital end of July 2013. Could hardly breathe. twice removed almost 2 liters fluid + blood from chest drain. Told it was amyloidosis. Obviously, pleural effussion. Legs horribly swollen and oozing fluid. Very much pain. Told had 3 days and didn't offer any treatment. On 5 th day she hit the roof and demanded treatment. She had begun to feel a little stronger. Then she fell in bathroom.
They agreed to start Velcade. That would have been about 2 weeks after all this began. She had 3 treatments. They removed drain and more fluids flew out than ever before. In addition she found large mass under arm they claim is overhealing from fracture during fall in hospital. At the time they said she had no breaks and fractures from fall??? She is told now there is no more myeloma??? After three treatments?? And, they weren't planning on doing more but once again she insisted. She is much stronger.
Can't believe this when 4 weeks ago she was giver "last rites". Quite frankly, I don't believe it!
Is this even possible or are they just trying to relieve her high anxiety???
I could not stand to believe she was really going to be OK again only to lose her very soon...
Rushed to hospital end of July 2013. Could hardly breathe. twice removed almost 2 liters fluid + blood from chest drain. Told it was amyloidosis. Obviously, pleural effussion. Legs horribly swollen and oozing fluid. Very much pain. Told had 3 days and didn't offer any treatment. On 5 th day she hit the roof and demanded treatment. She had begun to feel a little stronger. Then she fell in bathroom.
They agreed to start Velcade. That would have been about 2 weeks after all this began. She had 3 treatments. They removed drain and more fluids flew out than ever before. In addition she found large mass under arm they claim is overhealing from fracture during fall in hospital. At the time they said she had no breaks and fractures from fall??? She is told now there is no more myeloma??? After three treatments?? And, they weren't planning on doing more but once again she insisted. She is much stronger.
Can't believe this when 4 weeks ago she was giver "last rites". Quite frankly, I don't believe it!
Is this even possible or are they just trying to relieve her high anxiety???
I could not stand to believe she was really going to be OK again only to lose her very soon...
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mlkpoet
19 posts
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