Toni,
Thanks for asking.
Unfortunately I have no news. I am confused as to why none of my doctors will consider putting me on bisphosphonates. Are they dangerous?
I have a (pathological) fracture in my tibia that is non-union and constant bone pain. I am so afraid that another bone will break. I am using an Exogen Bone Stimulator to help with healing and hope that it is helping.
I found out that I am not low in vitamin D and calcium. I am post-menopausal (that was a surprise) and I am low in osteocalcin.
My M-spike has risen slowly over the last year and my FLC ratio had a 61% increase in 3 months while me kappa FLC increased 70%. I am IgG kappa.
Forums
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Tibia fracture - how is it different than a bone lesion?
I have to disclaim: I am no doctor. But it does make me curious why your doctors don't prescribe a bisphosphonate with the slow healing of the tibia and you are now postmenopausal.
Are you actually seeing a myeloma specialist? I do not mean to question, but if you are not, this would be the time to do it.
I am sorry your healing is taking so long. I hope the best outcomes for you.
Toni
Are you actually seeing a myeloma specialist? I do not mean to question, but if you are not, this would be the time to do it.
I am sorry your healing is taking so long. I hope the best outcomes for you.
Toni
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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
Re: Tibia fracture - how is it different than a bone lesion?
Toni,
Yes, I am (was) seeing an multiple myeloma specialist but have decided to switch. I don't feel he has my best interest at heart.
I drove 7 hours to see Dr. Martha Lacy at the Mayo Clinic in July 2014 and have sent her my latest lab results. I am hoping to hear from her soon. I spoke with her nurse yesterday and she is out of town.
I will now see the hem/onc that treats my dad for multiple myeloma. He studied at the Mayo clinic and will work with them if I ask.
I just want to feel better.
Toni, are you on bisphosphonates?
Yes, I am (was) seeing an multiple myeloma specialist but have decided to switch. I don't feel he has my best interest at heart.
I drove 7 hours to see Dr. Martha Lacy at the Mayo Clinic in July 2014 and have sent her my latest lab results. I am hoping to hear from her soon. I spoke with her nurse yesterday and she is out of town.
I will now see the hem/onc that treats my dad for multiple myeloma. He studied at the Mayo clinic and will work with them if I ask.
I just want to feel better.
Toni, are you on bisphosphonates?
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8oclockcoffee - Name: Brenda
- Who do you know with myeloma?: Myself, Father, Aunt, and Grandfather
- When were you/they diagnosed?: 08-2013
- Age at diagnosis: 47
Re: Tibia fracture - how is it different than a bone lesion?
I am glad to hear you are seeing a multiple myeloma specialist. There are so many nuances to the whole MGUS / smoldering myeloma / multiple myeloma process, I don't know how they can keep on top of it so well even when they're specialists! And Mayo is great.
I am not on bisphosphonates. I have osteopenia. I was 51 when the DEXA was done and still not menopausal, still am not now. My doctor wants me to have another scan in October.
My father broke a lot of bones before he passed away from cancer (metastatic prostate cancer). He had problems with osteoporosis and I've heard that that side of the family seems to be prone to it. My aunt had infusions as well. My sister is 5 years older than me and she's sustained fractured bones twice in one year. I told her to have a SPEP test done. I need to follow up to make sure she did.
So I would not be surprised if at some point it was recommended.
I would be interested in hearing what your myeloma specialist has to say about your situation. I hope you hear from her soon.
I am not on bisphosphonates. I have osteopenia. I was 51 when the DEXA was done and still not menopausal, still am not now. My doctor wants me to have another scan in October.
My father broke a lot of bones before he passed away from cancer (metastatic prostate cancer). He had problems with osteoporosis and I've heard that that side of the family seems to be prone to it. My aunt had infusions as well. My sister is 5 years older than me and she's sustained fractured bones twice in one year. I told her to have a SPEP test done. I need to follow up to make sure she did.
So I would not be surprised if at some point it was recommended.
I would be interested in hearing what your myeloma specialist has to say about your situation. I hope you hear from her soon.
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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
Re: Tibia fracture - how is it different than a bone lesion?
Toni,
I am just wondering if you mean biphosphonate infusions for osteoporosis?
Why did your aunt have them? Does she have osteoporosis or multiple myeloma?
Thank you for response in advance.
I am just wondering if you mean biphosphonate infusions for osteoporosis?
Why did your aunt have them? Does she have osteoporosis or multiple myeloma?
Thank you for response in advance.
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nomm
Re: Tibia fracture - how is it different than a bone lesion?
Nomm - Thanks for asking. My aunt had them for osteoporosis. I should ask that side of the family if there was any history of myeloma, now that I think of it. My mother has as well, but she does not have myeloma. And I'm glad we're having this discussion because I really need to make sure my sister, who is only 56, is being followed carefully after her two fractures. Perhaps she's MGUS as well.
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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
Re: Tibia fracture - how is it different than a bone lesion?
Toni,
I understand your concern about your sister regarding recent fractures, but don't worry too much. I know many people who have osteoporosis, fractured bones, but none of them have multiple myeloma or MGUS.
What I am trying to tell you is that women are more prone to osteoporosis and fractured bones. This comes from my experience in the medical field.
Don't stress yourself too much. Usually doctors can easily make a difference between regular / occasional fractures and pathological fractures (like in myeloma cases).
I understand your concern about your sister regarding recent fractures, but don't worry too much. I know many people who have osteoporosis, fractured bones, but none of them have multiple myeloma or MGUS.
What I am trying to tell you is that women are more prone to osteoporosis and fractured bones. This comes from my experience in the medical field.
Don't stress yourself too much. Usually doctors can easily make a difference between regular / occasional fractures and pathological fractures (like in myeloma cases).
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nomm
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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
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