Hello all,
I just went to my oncologist for my monthly visit and lab results. He has been suggesting that I start Zometa treatments as soon as all my dental work is finished (extractions and implants ). I am nearing the end of my dental work and he talked more in depth this time about these treatments.
His personal opinion was that he felt that a treatment every 3 months is good enough, but that he has to go by what is documented and what research shows. He has given this drug for several others and, if it is given monthly, he will only give it for 3 years at most. He has seen some issues at about the 3 year mark.
Wouldn't it be better to get treatments every quarter and be able to take it longer if needed?
Thank You, George
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Zometa - how often and for how long?
Not wanting to predict what will happen to another multiple myeloma patient, I have had Zometa now for 3 years and am seeing the start of osteonecrosis in my upper jaw.
The dental work I had done early in the piece went well, extraction and a 3 month Zometa break. Trouble started about 3 months ago and have been told to wait until the issue worsens before real solutions can be put in place. Scans show areas of concern and an extended Zometa break is now commencing. Antibiotics are the plan at the moment.
I guess I may start some form of remedial medication for the problem, or perhaps a clean up. Not sure, but it's worrying the heck out of me. Pain up to the eye and right hand side of the face keep me awake.
Now the trade off discussions start -- Zometa or no Zometa??
The dental work I had done early in the piece went well, extraction and a 3 month Zometa break. Trouble started about 3 months ago and have been told to wait until the issue worsens before real solutions can be put in place. Scans show areas of concern and an extended Zometa break is now commencing. Antibiotics are the plan at the moment.
I guess I may start some form of remedial medication for the problem, or perhaps a clean up. Not sure, but it's worrying the heck out of me. Pain up to the eye and right hand side of the face keep me awake.
Now the trade off discussions start -- Zometa or no Zometa??
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Alex
Re: Zometa - how often and for how long?
Well ... that's a REALLY good question!
Hem/oncs I've heard who have addressed that question are generally all over the map on dosage frequency and duration.
Will be interesting to see what other patients/posters here have heard.
Here's the Mayo consensus paper regarding Zometa treatment, from 2006:
http://www.mayoclinicproceedings.org/article/S0025-6196(11)61206-8/pdf
Steve
Hem/oncs I've heard who have addressed that question are generally all over the map on dosage frequency and duration.
Will be interesting to see what other patients/posters here have heard.
Here's the Mayo consensus paper regarding Zometa treatment, from 2006:
http://www.mayoclinicproceedings.org/article/S0025-6196(11)61206-8/pdf
Steve
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Steve C
Re: Zometa - how often and for how long?
Hi Castaway,
Probably the most recent consensus recommendation regarding Zometa dosing is the International Myeloma Working Group guidelines related to the treatment of myeloma bone disease. They came out last year. Here's a link to the Beacon article that discusses them:
https://myelomabeacon.org/news/2013/06/26/treatment-recommendations-multiple-myeloma-bone-disease/
The article says:
The experts recommend intravenous administration of bisphosphonates every three to four weeks in patients receiving the drugs during or after anti-myeloma therapy.
Treatment with Zometa should be administered until disease progression for patients who do not achieve a very good partial or complete response to their anti-myeloma therapy, and should be continued after relapse ...
The researchers add that the optimal treatment duration is not clear for patients who achieve a very good partial or complete response to their anti-myeloma therapy. The experts recommend, however, that these patients be treated for at least 12 months and up to 24 months and at their physicians’ discretion thereafter.
Probably the most recent consensus recommendation regarding Zometa dosing is the International Myeloma Working Group guidelines related to the treatment of myeloma bone disease. They came out last year. Here's a link to the Beacon article that discusses them:
https://myelomabeacon.org/news/2013/06/26/treatment-recommendations-multiple-myeloma-bone-disease/
The article says:
The experts recommend intravenous administration of bisphosphonates every three to four weeks in patients receiving the drugs during or after anti-myeloma therapy.
Treatment with Zometa should be administered until disease progression for patients who do not achieve a very good partial or complete response to their anti-myeloma therapy, and should be continued after relapse ...
The researchers add that the optimal treatment duration is not clear for patients who achieve a very good partial or complete response to their anti-myeloma therapy. The experts recommend, however, that these patients be treated for at least 12 months and up to 24 months and at their physicians’ discretion thereafter.
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JimNY
Re: Zometa - how often and for how long?
Hi Castaway,
My husband received monthly Zometa infusions during the 2 years he was taking Kyprolis/Revlimid/dex (clinical study for newly diagnosed multiple myeloma) at the University of Michigan multiple myeloma Clinic. He achieved a complete response and now takes 15 mg Revlimid maintenance.
For 3 months, the Zometa was held when he had to have an impacted/infected wisdom tooth extracted. He had several courses of antibiotics prior to the surgery but it wouldn't respond. During the extraction, his jawbone fractured so he had his jaw wired for 10 weeks. The oral surgeon and dentist said his jaw fractured because it was so thin where it was drilled and not due to the Zometa complications-- fortunately, he did not develop osteonecrosis.
When his onc/hematologist said he was stopping the Zometa after 24 months, I was really concerned because he has so many lesions in both arms, legs, and skull. Plus he had fractured a rib just before the wisdom tooth extraction and jaw fracture. JimNY's reply helps me better understand why my husband's onc/hematologist discontinued it. I had read on the Beacon website how many others were taking it for much longer, and I really wondered about it ...
Chris M.
My husband received monthly Zometa infusions during the 2 years he was taking Kyprolis/Revlimid/dex (clinical study for newly diagnosed multiple myeloma) at the University of Michigan multiple myeloma Clinic. He achieved a complete response and now takes 15 mg Revlimid maintenance.
For 3 months, the Zometa was held when he had to have an impacted/infected wisdom tooth extracted. He had several courses of antibiotics prior to the surgery but it wouldn't respond. During the extraction, his jawbone fractured so he had his jaw wired for 10 weeks. The oral surgeon and dentist said his jaw fractured because it was so thin where it was drilled and not due to the Zometa complications-- fortunately, he did not develop osteonecrosis.
When his onc/hematologist said he was stopping the Zometa after 24 months, I was really concerned because he has so many lesions in both arms, legs, and skull. Plus he had fractured a rib just before the wisdom tooth extraction and jaw fracture. JimNY's reply helps me better understand why my husband's onc/hematologist discontinued it. I had read on the Beacon website how many others were taking it for much longer, and I really wondered about it ...
Chris M.
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Chris M.
Re: Zometa - how often and for how long?
I can only share my one and only experience with Zometa, which was about 3 weeks ago. My experience with it was not good. I was sick for a good three days afterwards. I also have 20 broken bones (chasing Evil Knievel, I guess), most from a motorcycle vs. deer incident from 6 years ago.
Anyway, the Zometa felt like a hammer against all of my broken bones and I found the pain to be excruciating (imagine 9 broken ribs flaring up after 6 years, not that the pain ever really went away). I have pretty much decided against another Zometa treatment, but am going to the Mayo Clinic in Rochester in August for a week for a serious second opinion on what I should do and what might be available with the possibility of some sort of clinical trial for me.
Back to the Zometa, I serious believe in quality of life versus quantity of life. I found my first experience with Zometa was a miserable experience for me in my multiple myeloma journey. I really do not think I will try it again, as I had zero quality for several days after taking it.
I am on Revlimid and Dex and was diagnosed 1 year and 11 days ago. Not really sure my response is what you were looking for, but I felt the need to share, in case someone was considering taking it.
The worst part was the pain it caused me at all my fractures. It was not a pleasant experience for me -- not that having multiple myeloma is a walk thru the park.
Anyway, the Zometa felt like a hammer against all of my broken bones and I found the pain to be excruciating (imagine 9 broken ribs flaring up after 6 years, not that the pain ever really went away). I have pretty much decided against another Zometa treatment, but am going to the Mayo Clinic in Rochester in August for a week for a serious second opinion on what I should do and what might be available with the possibility of some sort of clinical trial for me.
Back to the Zometa, I serious believe in quality of life versus quantity of life. I found my first experience with Zometa was a miserable experience for me in my multiple myeloma journey. I really do not think I will try it again, as I had zero quality for several days after taking it.
I am on Revlimid and Dex and was diagnosed 1 year and 11 days ago. Not really sure my response is what you were looking for, but I felt the need to share, in case someone was considering taking it.
The worst part was the pain it caused me at all my fractures. It was not a pleasant experience for me -- not that having multiple myeloma is a walk thru the park.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Zometa - how often and for how long?
Had Zometa for about 16 weeks prior to my transplant in mid-April. I'm told I'll start Zometa again in a couple of months, probably 3 months on and 3 months off. FWIW.
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Pusser
Re: Zometa - how often and for how long?
My Oncologist has me on it for 2 years. I take it by IV once a month. I took it for 5 months prior to my SCT, and the rest have been since my transplant. I have about 4 months left. I have not had any problems with it.
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Vickie Jasmann
Re: Zometa - how often and for how long?
I had just the opposite reaction as Bob had in my fracture sites. As the time of my next Zometa infusion approaches, my fracture sites begin to be painful. Within a day after my infusion, the bone pain resolves.
I started getting Zometa infusions once every 4 weeks for 9 months once I developed a pathologic fracture in my left humerus. The infusions were stopped prior to my stem cell harvesting and weren't resumed until 100 days after my transplant 5 months later. Since then I've been getting the infusion every 6 weeks except for 3 months during the time I had knee replacement surgery.
Each time I have had a break from the transfusions -- during stem cell transplant and during knee surgery -- I have either broken another bone or developed more lesions. So I have been receiving Zometa infusions since 2009 with no problems with the Zometa. My oncologist says that, with my fragile bones, I need to stay on Zometa. I have bone lesions everywhere in my body.
As you can see from all of the posts, people are on all kinds of schedules of infusion as to how often and for how long. It really comes down to how each of us reacts to the drug and what happens to us when we aren't getting the drug.
Nancy in Phila
I started getting Zometa infusions once every 4 weeks for 9 months once I developed a pathologic fracture in my left humerus. The infusions were stopped prior to my stem cell harvesting and weren't resumed until 100 days after my transplant 5 months later. Since then I've been getting the infusion every 6 weeks except for 3 months during the time I had knee replacement surgery.
Each time I have had a break from the transfusions -- during stem cell transplant and during knee surgery -- I have either broken another bone or developed more lesions. So I have been receiving Zometa infusions since 2009 with no problems with the Zometa. My oncologist says that, with my fragile bones, I need to stay on Zometa. I have bone lesions everywhere in my body.
As you can see from all of the posts, people are on all kinds of schedules of infusion as to how often and for how long. It really comes down to how each of us reacts to the drug and what happens to us when we aren't getting the drug.
Nancy in Phila
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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 - how often and for how long?
Hello All,
I can't say enough about how grateful I am having the Myeloma Beacon for support. I also want to thank all of you that answered my post whether your treatment of Zometa was good or bad. This is all very good information and the links that were posted also helped.
I am currently on Revlimid 25mg 21 days on with 7 off and dexamethasone once per week 40mg. No issues so far. I broke multiple ribs back in January putting away Christmas decorations in the attic. While using a drop-down ladder I slipped and got wedged between the rafters and some large boxes that I was pushing up the ladder. After that it was X-rays and blood work. Well you know the rest of the story.
My oncologist has told me that I might feel like i am having a flu like symptom when on Zometa. I have been off work since February due to the broken ribs. They have all healed but one. My line of work is very demanding. I work on heavy equipment and there is no light duty. So I need to be sure that I am ok when i do go back to work. The Zometa treatments would be beneficial to me but like the other drugs that I am taking I am concerned. I recently also had 4 dental implants done and will have 3 more extractions in August. That also has me concerned because of what could happen to the jaw.
My first visit to a transplant hospital is on July 7th so i will add the Zometa concerns to my list of questions for them. And i will use the experiences that some of you have had. Good or not so good.
Thank You, George
I can't say enough about how grateful I am having the Myeloma Beacon for support. I also want to thank all of you that answered my post whether your treatment of Zometa was good or bad. This is all very good information and the links that were posted also helped.
I am currently on Revlimid 25mg 21 days on with 7 off and dexamethasone once per week 40mg. No issues so far. I broke multiple ribs back in January putting away Christmas decorations in the attic. While using a drop-down ladder I slipped and got wedged between the rafters and some large boxes that I was pushing up the ladder. After that it was X-rays and blood work. Well you know the rest of the story.
My oncologist has told me that I might feel like i am having a flu like symptom when on Zometa. I have been off work since February due to the broken ribs. They have all healed but one. My line of work is very demanding. I work on heavy equipment and there is no light duty. So I need to be sure that I am ok when i do go back to work. The Zometa treatments would be beneficial to me but like the other drugs that I am taking I am concerned. I recently also had 4 dental implants done and will have 3 more extractions in August. That also has me concerned because of what could happen to the jaw.
My first visit to a transplant hospital is on July 7th so i will add the Zometa concerns to my list of questions for them. And i will use the experiences that some of you have had. Good or not so good.
Thank You, George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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