Marvin,
Your question about how to monitor your bones if you decide not to do the Zometa infusion is a very good one. Many people get periodic CT/PET scans and MRI's of the bones since they are better at showing damage to the bones and/or active lesions than the skeletal x-rays.
When I was first diagnosed, there was no evidence of damage to my bones by x-ray. A year later, I had a pathologic fracture of my left arm. X-rays done at that time showed that I had lesions throughout my body, including my skull. Would an MRI or CT/PET scan showed the lesions even if the x-rays didn't? Who knows. I just wish in hindsight that I had had the other scans sooner. Maybe I could have avoided a fracture.
I was on Zometa infusions every month after the fracture for a year. Now I have it every 6 weeks. I can tell when it is coming to time for the next infusion because some of my bones begin to ache a little, especially in the healed fracture site.
For me, the risk of ONJ is worth being somewhat assured that I won't develop more bone problems. But I don't have any kidney issues to deal with.
Do lots of research concerning the kidney risk of both Zometa and Aredia. You are in a very special situation since you only have one kidney and don't want to lose its good function.
Nancy
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Zometa with no bone lesions?
Hi Marvin,
I had a skeletal survey done with xray and everything looked great. I then had a PET scan and it showed numerous, small lesions in a lot of areas.
I would recommend you have a PET scan before making any decisions (I'm just playing doctor here).
I had a skeletal survey done with xray and everything looked great. I then had a PET scan and it showed numerous, small lesions in a lot of areas.
I would recommend you have a PET scan before making any decisions (I'm just playing doctor here).
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Zometa with no bone lesions?
My husband had Zometa infusions every three weeks for the last four years of his life. He had prostate cancer with widespread bone mes. The first treatment caused him fatigue and aches, but then after that he actually felt better after his infusions. It helped keep his bone strong to resist the tumors. He had kidney issues and liver issues since his cancer was in every organ, but was still able to have Zometa up until the last three weeks of his life. I believe the Zometa helped a great deal with his bone pain and progression.
Re: Zometa with no bone lesions?
My doctor has suggested I start Zometa once per month. I was just diagnosed last week and started treatment with Velcade, Revlimid, and dexamethasone yesterday. I have no skeletal lesions on bone survey and no focal pain. She said this can be good for long-term survival benefit.
Is this sort of "pre-treatment" in the absence of bone lesions common?
Is this sort of "pre-treatment" in the absence of bone lesions common?
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Benny - Name: BM1971
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2/16
- Age at diagnosis: 45
Re: Zometa with no bone lesions?
I do have lesions in my long bones, and was to start infusions (1x monthly for 2 years, as seems common in the US) February this year. However, I read about the need to get any dental work done first and delayed. Then, I kept reading about Zometa and continued delaying.
I had 6 months of RVd (Revlimid, Velcade, dexamethasone) induction and responded well to it. Finally, 2 months ago I got my first Zometa infusion. I did keep reading though about ONJ (osteonecrosis of the jaw) and fractures, much of it anecdotal and mentioned my concerns to my specialist. She offered I could get infusions once every 3 months. Yes!
Then I met with my surgeon, who specializes in osteo oncology surgery, and he said the first infusion is very important, that there is no risk of fracture with two infusions, and we then discussed half-life, personal strategies, what he would do if it were his myeloma, etc.
After speaking with my specialist, local oncologist, dentist, and osteo surgeon - I've decided to be cautious. It's telling that none of them are pushing back against my caution. Many people have Zometa infusions for years without incident so I am not arguing against current protocol, only saying I'm choosing a more conservative path.
My lesions seem not to be active currently, thank you RVd!, so I will get 2-4 infusions and revisit in 3 years or so. I'm currently on Velcade maintenance.
It's important to get any dental work done now before beginning Zometa as its half-life is measured in years. They don't know how ONJ develops, there seems to be no logic to it, but any exposed bone increases the risk.
I had 6 months of RVd (Revlimid, Velcade, dexamethasone) induction and responded well to it. Finally, 2 months ago I got my first Zometa infusion. I did keep reading though about ONJ (osteonecrosis of the jaw) and fractures, much of it anecdotal and mentioned my concerns to my specialist. She offered I could get infusions once every 3 months. Yes!
Then I met with my surgeon, who specializes in osteo oncology surgery, and he said the first infusion is very important, that there is no risk of fracture with two infusions, and we then discussed half-life, personal strategies, what he would do if it were his myeloma, etc.
After speaking with my specialist, local oncologist, dentist, and osteo surgeon - I've decided to be cautious. It's telling that none of them are pushing back against my caution. Many people have Zometa infusions for years without incident so I am not arguing against current protocol, only saying I'm choosing a more conservative path.
My lesions seem not to be active currently, thank you RVd!, so I will get 2-4 infusions and revisit in 3 years or so. I'm currently on Velcade maintenance.
It's important to get any dental work done now before beginning Zometa as its half-life is measured in years. They don't know how ONJ develops, there seems to be no logic to it, but any exposed bone increases the risk.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Zometa with no bone lesions?
Does this apply to a routine cleaning?
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Benny - Name: BM1971
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2/16
- Age at diagnosis: 45
Re: Zometa with no bone lesions?
No - only any extensive dental work. I needed to have an extraction, that is considered dicey after one is on Zometa.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Zometa with no bone lesions?
Hi,
I have a similar question.
My dad 75 years old was diagnosed last month with Stage 2 multiple myeloma as per his doctor.
Dad has suddenly developed anemia of 10.4 g/l for the last 2 years it stayed that level until it went lower last month to 9 g/l .The GP decided to do a series of test, especially that he had fever, after witch the tests revealed multiple myeloma.
Paraprotein.(or M-protein) was 23 g/l (2.3 g/dL) after a month no ttt retest 24 g/l (2.4 g/dL).
EGFR 53 ml/min/1.73 after a month 63
Lambda: 300 after a month 330 mg/l
Kappa-lambda ratio: 0.1
No bone lesions
Plasma affected: 23%
FISH: p53 deletion, 1q21 gain
So the doctor told dad he has only months to live and has poor prognosis due to the deletion. Dad didn't start treatment for a month and was retested with the above results. Now they will start him once week Velcade subcutaneous, cyclophosphamide IV, and dexamethasone and monthly Zometa.
My question is: Is there a need for the Zometa if he has no bone lesions, or is it because its aggressive that he needs it monthly?
I have a similar question.
My dad 75 years old was diagnosed last month with Stage 2 multiple myeloma as per his doctor.
Dad has suddenly developed anemia of 10.4 g/l for the last 2 years it stayed that level until it went lower last month to 9 g/l .The GP decided to do a series of test, especially that he had fever, after witch the tests revealed multiple myeloma.
Paraprotein.(or M-protein) was 23 g/l (2.3 g/dL) after a month no ttt retest 24 g/l (2.4 g/dL).
EGFR 53 ml/min/1.73 after a month 63
Lambda: 300 after a month 330 mg/l
Kappa-lambda ratio: 0.1
No bone lesions
Plasma affected: 23%
FISH: p53 deletion, 1q21 gain
So the doctor told dad he has only months to live and has poor prognosis due to the deletion. Dad didn't start treatment for a month and was retested with the above results. Now they will start him once week Velcade subcutaneous, cyclophosphamide IV, and dexamethasone and monthly Zometa.
My question is: Is there a need for the Zometa if he has no bone lesions, or is it because its aggressive that he needs it monthly?
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lili88 - Name: lili
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: may 2018
- Age at diagnosis: 75
Re: Zometa with no bone lesions?
Hi Lili,
Welcome to the forum, but I'm sorry that you find yourself here.
First, I'm a bit surprised that your father's doctor said that he only has "months to live" given his p53 deletion and 1q21 gains. Was this statement made in the context of your father not receiving any treatment or does your father have some additional comorbidities? Yes, p53 deletions and 1q21 gains are clearly concerning. But no doctor can predict that these genetic abnormalities will will result in a given individual lasting only a few months, especially without first seeing how he responds to the initial treatment regimen.
Regarding the use of Zometa, did your father have a DEXA scan to measure his bone density? It wouldn't be that unusual for a doctor to prescribe Zometa if your father was also suffering from osteopenia or osteoporosis.
Can I assume that your father is now under the care of a hematologist/oncologist instead of a GP?
Lastly, you might find some useful information regarding bisphosphonate use and how the Mayo suggests to treat patients with p53 deletions (Del 17p) and 1q gains here:
https://www.msmart.org/mm-treatment-guidelines.html
Welcome to the forum, but I'm sorry that you find yourself here.
First, I'm a bit surprised that your father's doctor said that he only has "months to live" given his p53 deletion and 1q21 gains. Was this statement made in the context of your father not receiving any treatment or does your father have some additional comorbidities? Yes, p53 deletions and 1q21 gains are clearly concerning. But no doctor can predict that these genetic abnormalities will will result in a given individual lasting only a few months, especially without first seeing how he responds to the initial treatment regimen.
Regarding the use of Zometa, did your father have a DEXA scan to measure his bone density? It wouldn't be that unusual for a doctor to prescribe Zometa if your father was also suffering from osteopenia or osteoporosis.
Can I assume that your father is now under the care of a hematologist/oncologist instead of a GP?
Lastly, you might find some useful information regarding bisphosphonate use and how the Mayo suggests to treat patients with p53 deletions (Del 17p) and 1q gains here:
https://www.msmart.org/mm-treatment-guidelines.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Zometa with no bone lesions?
Hi,
Thanks for the response.
The treating heamatologist handling my dad now informed him that if he has no treatment he will have only months to live. He explained that his multiple myeloma is aggressive based on his lab results, even though he has no physical symptoms at all or complaints, which shocked all of us. But dad still delayed treatment for a month to let the info sink in.
He has no osteoporosis or any other bone issues, as per his doc.
Am not sure if he did bone density but he did a skeletal imaging for bone lesions, which was actually requested by dad, as he seemed to think it doesn't change the diagnosis or treatment. but it was all clear.
Am not sure how you know if multiple myeloma is aggressive or not, but based on the results mentioned, he said he was Stage 2 and disease is active. His iron was low, only 2, so I thought that he has only iron deficiency anemia, and his creatinine is 99, so was a bit confused why he thought it was aggressive. Like he didn't even want to wait and see, he wanted dad to start treatment ASAP. Sorry, still new to all this
Thanks for the response.
The treating heamatologist handling my dad now informed him that if he has no treatment he will have only months to live. He explained that his multiple myeloma is aggressive based on his lab results, even though he has no physical symptoms at all or complaints, which shocked all of us. But dad still delayed treatment for a month to let the info sink in.
He has no osteoporosis or any other bone issues, as per his doc.
Am not sure if he did bone density but he did a skeletal imaging for bone lesions, which was actually requested by dad, as he seemed to think it doesn't change the diagnosis or treatment. but it was all clear.
Am not sure how you know if multiple myeloma is aggressive or not, but based on the results mentioned, he said he was Stage 2 and disease is active. His iron was low, only 2, so I thought that he has only iron deficiency anemia, and his creatinine is 99, so was a bit confused why he thought it was aggressive. Like he didn't even want to wait and see, he wanted dad to start treatment ASAP. Sorry, still new to all this
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lili88 - Name: lili
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: may 2018
- Age at diagnosis: 75
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