Very confused on the whole subject of the status of my bones.
For me, they did an x-ray bone scan at diagnosis and told me there were 'a few small lesions', but the damage wasn't that bad. A few weeks later, on induction treatment, I was having pretty severe rib pain when coughing / sneezing, so I questioned them further on the status of my bones. They did another close-up x-ray of my ribs, and decided I was a candidate for Zometa after all, because of the thinness of my ribs (haven't started that yet, but will when I get cleared for dental work).
After 6 weeks on induction treatment, the rib pain has fortunately decreased significantly.
So when is an MRI or PET scan indicated? How do I know there are no plasmacytomas or soft-tissue lesions? I did ask for an MRI, because I wanted a good baseline for future comparison, but they were reluctant to do that, since they felt it was not necessary, and wouldn't change the treatment plan anyway if something else showed up on the scan.
After reading other peoples' stories about how some strands of myeloma keep damaging your bones even though there is a minimal M-spike, it leaves me wondering about the importance of a baseline just for the bones. My plasma cell percentage at diagnosis was 52%, so doesn't that mean my bones are pretty messed up?
RT
Forums
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Bone pain, bone healing, and treatment?
Edna2,
My husband is in a clinical trial to test another bone strengthening drug with the hope of getting it FDA approved for myeloma. The trial drug is given by subcutaneous shot, not IV drip. It also does not have the flu like symptoms as a possible side effect. The trial is double blind, so we do not know if my husband is on Zometa or the trial drug. He receives both a shot and the IV drip and one or the other is a placebo. We think he is on the new drug because he did not get the flu-like symptoms.
As for healing bones, I am hopeful because my husband's hip was an eggshell at diagnosis. The hip pain led to diagnosis and the pain went completely away during induction treatment. An x-ray 3 months into induction showed some bone improvement.
My husband is in a clinical trial to test another bone strengthening drug with the hope of getting it FDA approved for myeloma. The trial drug is given by subcutaneous shot, not IV drip. It also does not have the flu like symptoms as a possible side effect. The trial is double blind, so we do not know if my husband is on Zometa or the trial drug. He receives both a shot and the IV drip and one or the other is a placebo. We think he is on the new drug because he did not get the flu-like symptoms.
As for healing bones, I am hopeful because my husband's hip was an eggshell at diagnosis. The hip pain led to diagnosis and the pain went completely away during induction treatment. An x-ray 3 months into induction showed some bone improvement.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Bone pain, bone healing, and treatment?
Hi EF11,
Thank you for the information about the trial your husband is participating in. Do you know if it is this trial
"Denosumab Compared to Zoledronic Acid in the Treatment of Bone Disease in Subjects With Multiple Myeloma" (trial information at clinicaltrials.gov)
From the trial description, it sounds a lot like the trial you described. It is comparing Xgeva (denosumab), which is given as a subcutaneous injection, to Zometa (zoledronic acid).
Thank you for the information about the trial your husband is participating in. Do you know if it is this trial
"Denosumab Compared to Zoledronic Acid in the Treatment of Bone Disease in Subjects With Multiple Myeloma" (trial information at clinicaltrials.gov)
From the trial description, it sounds a lot like the trial you described. It is comparing Xgeva (denosumab), which is given as a subcutaneous injection, to Zometa (zoledronic acid).
Re: Bone pain, bone healing, and treatment?
Xgeva sounds like an interesting new drug, and hope it works out in the clinical trials, which I see are recruiting in over 300 locations worldwide! Bone health is such an important issue with many of us, and mobility is so important for QOL too. Nice to see new research with potential improvements being presented this way.
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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: Bone pain, bone healing, and treatment?
Cheryl - Yes, that looks like the trial my husband is participating in.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Bone pain, bone healing, and treatment?
My husband had the entire center of his right iliac destroyed by a tumor. He had knee problems, and was told that the pain in his hip was a function of the knee and would resolve after surgery. Turns out that's where the myeloma started, and by the time he was diagnosed in April 2014, he had a fist-sized hole in the iliac and a fracture just above the acetabulum. He had stage 3 IgG myeloma, with 55 grams per litre (5.5 g/dL) m-protein. 5 fractured vertebrae, 10+ rib fractures (they stopped counting), both clavicles fractured, and innumerable lesions. Plus the giant hole.
6 months of no weight bearing, followed by walker, then walking sticks for exercise. We were told that the fracture would likely heal, but the hole would not fill in.
He did 5 cycles of CyBorD and monthly pamidronate (Aredia), which brought him down to trace levels of m-proteins, but the Cytoxan damaged his lungs, so he's not eligible for transplant.
Since September he's been off all chemo, but taking 8 grams a day of Doctor's Best curcumin. As of January, he has no monoclonal band on the SPEP.
Late March we saw the orthopaedic oncologist again for follow up on the hip. The hole has filled in entirely. It's still not as dense as the left iliac, but the bone healing was remarkable.
Iliac in April 2014
Iliac in March 2015
6 months of no weight bearing, followed by walker, then walking sticks for exercise. We were told that the fracture would likely heal, but the hole would not fill in.
He did 5 cycles of CyBorD and monthly pamidronate (Aredia), which brought him down to trace levels of m-proteins, but the Cytoxan damaged his lungs, so he's not eligible for transplant.
Since September he's been off all chemo, but taking 8 grams a day of Doctor's Best curcumin. As of January, he has no monoclonal band on the SPEP.
Late March we saw the orthopaedic oncologist again for follow up on the hip. The hole has filled in entirely. It's still not as dense as the left iliac, but the bone healing was remarkable.
Iliac in April 2014
- April 2014
- Iliac-hole-crop.jpg (94.41 KiB) Viewed 1499 times
Iliac in March 2015
- March 2015
- Iliac-healed-v2.jpg (93.35 KiB) Viewed 1496 times
Last edited by LisaE on Fri Apr 17, 2015 12:33 pm, edited 1 time in total.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Bone pain, bone healing, and treatment?
Wow, Lisa. What a difference a year makes! That first hip image looks similar to my husband's also right side. Was your husband on any bone strengthener? Hope the good stable condition continues for many years!
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Bone pain, bone healing, and treatment?
Lisa,
"Remarkable" is an understatement when looking at the before and after pictures. The difference is absolutely miraculous.
We are looking at a mammoth lytic lesion healing and filling in here, right?
"Remarkable" is an understatement when looking at the before and after pictures. The difference is absolutely miraculous.
We are looking at a mammoth lytic lesion healing and filling in here, right?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone pain, bone healing, and treatment?
Multibilly - yes. The tumour was enormous, and ate through the bone. We expected the bone rim to strengthen, but none of us – including my husband's medical team – expected this kind of healing.
We didn't fully understand how bad it was until the tumour flared during radiation treatment and caused the small fracture to separate. Our orthopaedic oncologist was wonderful, but really my husband's body did the work.
My husband has been on calcium and vitamin D, plus the pamidronate infusions once a month.
We didn't fully understand how bad it was until the tumour flared during radiation treatment and caused the small fracture to separate. Our orthopaedic oncologist was wonderful, but really my husband's body did the work.
My husband has been on calcium and vitamin D, plus the pamidronate infusions once a month.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Bone pain, bone healing, and treatment?
That is amazing! Thank you for sharing the images here. I'm astounded that the bone healed so well! There truly is hope, isn't there?
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
23 posts
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