I'm still doubtful. There are many opinions saying that Zometa can cause problems (teeth, jaw, etc.). And it makes me move forward in the idea of the disease. I no longer have control on me.
I'll ask another medical opinion, but I appreciate your delicacy in your posts, always comforting.
Thank you.
Forums
Re: Zometa infusions
What you are describing is osteonecrosis of the jaw (ONJ). The risk of ONJ from Zometa is real, but it is also quite small (<5% based on the study below).
"ONJ As A Prognostic Factor In Myeloma Patients Treated With Zometa (ASCO 2009)," The Myeloma Beacon, May 29, 2009.
Any oncologist would likely want you to get any dental work taken care of before starting Zometa and to monitor your dental health while on Zometa.
A second opinion is always a great idea. None of the bisphosophonate drugs should be taken lightly and they do carry side effects in addition to ONJ - but they can help prevent much more serious issues down the road.
"ONJ As A Prognostic Factor In Myeloma Patients Treated With Zometa (ASCO 2009)," The Myeloma Beacon, May 29, 2009.
Any oncologist would likely want you to get any dental work taken care of before starting Zometa and to monitor your dental health while on Zometa.
A second opinion is always a great idea. None of the bisphosophonate drugs should be taken lightly and they do carry side effects in addition to ONJ - but they can help prevent much more serious issues down the road.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Zometa infusions
In a recent article that I read, Dr Morgan said that "minor bisphosphonates seem to be good, and they go to the bone where they’re concentrated. They kill myeloma cells and also kill the cells that resolve the bone. So they make your bones a lot stronger."
This is the only time I've seen on the Internet that bisphosphonates can kill myeloma cells.
Is it a "misnomer" or the result of a new study?
Because, if it is verified, it is a great hope.
When I saw my hematologist, and when he said he wanted to give me Zometa, I asked him if it stopped myeloma, but he did not answer.
This is the only time I've seen on the Internet that bisphosphonates can kill myeloma cells.
Is it a "misnomer" or the result of a new study?
Because, if it is verified, it is a great hope.
When I saw my hematologist, and when he said he wanted to give me Zometa, I asked him if it stopped myeloma, but he did not answer.
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Jacqueline - Name: Jacqueline
- When were you/they diagnosed?: november 2010
- Age at diagnosis: 53
Re: Zometa infusions
Dr. Morgan is likely referring to the MRC Myeloma IX study, which he was part of.
GJ Morgan et al, "Long-term Follow-up of MRC Myeloma IX Trial: Survival Outcomes with Bisphosphonate and Thalidomide Treatment," Clinical Cancer Research, August 2013 (full text)
See also this Beacon article by Dr. David Roodman, "Recent Advances In The Treatment Of Myeloma Bone Disease" (Sep 23, 2011), where he writes:
Note that the bisphopshonate that demonstrates this anti-myeloma activity is specifically Zometa and not some of the other bisphosphonates that are sometimes used to treat multiple myeloma.
My specialist also believes that Zometa has anti-myeloma properties.
GJ Morgan et al, "Long-term Follow-up of MRC Myeloma IX Trial: Survival Outcomes with Bisphosphonate and Thalidomide Treatment," Clinical Cancer Research, August 2013 (full text)
See also this Beacon article by Dr. David Roodman, "Recent Advances In The Treatment Of Myeloma Bone Disease" (Sep 23, 2011), where he writes:
"The results of this trial showed that targeting the bone with Zometa as part of treatment significantly improved survival of patients with myeloma. These results show that preventing and treating myeloma bone disease has beneficial effects beyond just controlling bone pain and preventing fractures; it also increases survival"
Note that the bisphopshonate that demonstrates this anti-myeloma activity is specifically Zometa and not some of the other bisphosphonates that are sometimes used to treat multiple myeloma.
My specialist also believes that Zometa has anti-myeloma properties.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Zometa infusions
As regards the jaw necrosis as a side effect from Zometa, I asked my dentist about this when I started Zometa, and he said it is very rare, and he has a lot of patients on Zometa. He also said he ONLY sees it in the case of trauma to the jaw - tooth extraction, jaw surgery, or actual jaw trauma (like falling a breaking your jaw).
After hearing that, I was confident that the benefits outweighed the risks. But I also had multiple, easily-seen bone lesions at the time of diagnosis. Needless to say, I won't be going skiing this year, despite having epic snowfall here in Maine. Darn!
The first month I got Zometa, I had a horrible flu-like reaction with a lot of bone pain. But that only happened the first time. I've had it monthly since August, and that flu-like reaction has not happened again!
After hearing that, I was confident that the benefits outweighed the risks. But I also had multiple, easily-seen bone lesions at the time of diagnosis. Needless to say, I won't be going skiing this year, despite having epic snowfall here in Maine. Darn!
The first month I got Zometa, I had a horrible flu-like reaction with a lot of bone pain. But that only happened the first time. I've had it monthly since August, and that flu-like reaction has not happened again!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Zometa infusions
Hello,
Regarding use of bisphosphonates, this may be of interest, see this paper,
E Terpos et al, "Optimal use of bisphosphonates in patients with multiple myeloma," Blood, April 2013 (full text)
particularly this section titled "Is there any anti-myeloma effect of bisphonates?"
Also, there is an updated position paper from American Association of Oral and Maxillofacial Surgeons:
"Medication-Related Osteonecrosis of the Jaw—2014 Update"
Something to keep in mind, a bone in my jaw broke due to multiple myeloma, no trauma needed.
Regarding use of bisphosphonates, this may be of interest, see this paper,
E Terpos et al, "Optimal use of bisphosphonates in patients with multiple myeloma," Blood, April 2013 (full text)
particularly this section titled "Is there any anti-myeloma effect of bisphonates?"
The recent MRC-IX study showed that zoledronic acid prolonged the median overall survival of the patients by 5.5 months over clodronate.9 This was mainly the result of the beneficial effect of zoledronic acid in patients who had bone disease at baseline. Patients presenting with bone disease who received zoledronic acid had a survival advantage of 10 months, whereas all other patients had similar survival with those who received clodronate.”
Also, there is an updated position paper from American Association of Oral and Maxillofacial Surgeons:
"Medication-Related Osteonecrosis of the Jaw—2014 Update"
Something to keep in mind, a bone in my jaw broke due to multiple myeloma, no trauma needed.
Re: Zometa infusions
Good morning,
Osteonecrosis is a reality. I have it my left side upper jaw. Zometa was immediately stopped once a dental technician took a look.
I'd had monthly infusions for 2 years, dental work well before all treatment commenced, but the extraction wound gave me trouble from day 1.
The region involved has had scans with the verdict being, " We could do something but do you really want to go through that?"
Other multiple myeloma patients at my clinic are all over me for information, going to their specialists with concerns.
I battle thru each day with excessive number of pain killers and simply wait for something to happen – a crack in the middle of the night, a reduction in pain, or a phone call with a solution.
No Zometa now for 3 years, multiple myeloma numbers remain steady, but where does this head next?
Osteonecrosis is a reality. I have it my left side upper jaw. Zometa was immediately stopped once a dental technician took a look.
I'd had monthly infusions for 2 years, dental work well before all treatment commenced, but the extraction wound gave me trouble from day 1.
The region involved has had scans with the verdict being, " We could do something but do you really want to go through that?"
Other multiple myeloma patients at my clinic are all over me for information, going to their specialists with concerns.
I battle thru each day with excessive number of pain killers and simply wait for something to happen – a crack in the middle of the night, a reduction in pain, or a phone call with a solution.
No Zometa now for 3 years, multiple myeloma numbers remain steady, but where does this head next?
-
Alex
Re: Zometa infusions
Hello,
I saw my dentist there a few days.
It is not clear on bisphosphonates.
For him, the bisphosphonates goes well make the bones stronger, but it will turn it into a mineral, if I have understood correctly, the bone would be less alive in some way (?)
Necrosis of the jaw are a reality anyway.
And if the Zometa is really a myeloma killer, why not say loud and clear? This works for all or only for a few people?
I'm starting to get tired.
I saw my dentist there a few days.
It is not clear on bisphosphonates.
For him, the bisphosphonates goes well make the bones stronger, but it will turn it into a mineral, if I have understood correctly, the bone would be less alive in some way (?)
Necrosis of the jaw are a reality anyway.
And if the Zometa is really a myeloma killer, why not say loud and clear? This works for all or only for a few people?
I'm starting to get tired.
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Jacqueline - Name: Jacqueline
- When were you/they diagnosed?: november 2010
- Age at diagnosis: 53
Re: Zometa infusions
I had Zometa IV drip from Nov 2006 and had it nearly every month for a few years.
I was diagnosed with multiple myeloma in Nov 2006 and given 20-30 months - well, as you can see I have well and truly outlived that - HA!
Unfortunately, I was one of the lucky ones who developed osteonecrosis of my jaw and had to have loads of teeth taken out. I have the 8 on the middle top and 2 on the bottom right and my wisdom tooth on its lonesome on the left.
I have a big hole next to that tooth and every so often bone breaks away.
Luckily as it was the hospital that caused it, I am getting false choppers for nothing. They are being made by a man called Wolfgang in Munich, Germany.
When I saw my dentist last week, he told me that he went to Germany for the Beerfest last year and was hanging out with Wolfgang and they were discussing my case, LOL
We have another dentist over here who has made a big study of my condition and they have told me they have never seen a case as bad as mine
However, you may be one of the lucky ones who doesn't have to have lots of Zometa IV drips.
Good luck whatever you decide to do
This is a good read IMHO
http://www.oif.org/site/DocServer/Osteonecrosis_of_the_Jaw.pdf?docID=7218
I was diagnosed with multiple myeloma in Nov 2006 and given 20-30 months - well, as you can see I have well and truly outlived that - HA!
Unfortunately, I was one of the lucky ones who developed osteonecrosis of my jaw and had to have loads of teeth taken out. I have the 8 on the middle top and 2 on the bottom right and my wisdom tooth on its lonesome on the left.
I have a big hole next to that tooth and every so often bone breaks away.
Luckily as it was the hospital that caused it, I am getting false choppers for nothing. They are being made by a man called Wolfgang in Munich, Germany.
When I saw my dentist last week, he told me that he went to Germany for the Beerfest last year and was hanging out with Wolfgang and they were discussing my case, LOL
We have another dentist over here who has made a big study of my condition and they have told me they have never seen a case as bad as mine
However, you may be one of the lucky ones who doesn't have to have lots of Zometa IV drips.
Good luck whatever you decide to do
This is a good read IMHO
http://www.oif.org/site/DocServer/Osteonecrosis_of_the_Jaw.pdf?docID=7218
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LeslieK - Name: LeslieK
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov 2006
- Age at diagnosis: 51
Re: Zometa infusions
Thank you Leslie
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Jacqueline - Name: Jacqueline
- When were you/they diagnosed?: november 2010
- Age at diagnosis: 53
23 posts
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