I know that there are a lot of posts on Zometa treatments and I have read several of them. My situation was that I needed to get all my dental extractions done before Zometa could be administered. Well, I got that out of the way and next month will start monthly Zometa treatments. My questions are more related to how the treatment will effect my current bone issues.
My bone survey shows degenerative spondylosis. C4, C5 and C7 vertebral segments with punched out on scout, likely lesions. Osteopenia. Mild retrolisthesis of L2 vertabral body. Anterior compression change of L1 and superior endplate. L5 degenerative of this disease. Lesions also on right femur and right pelvis.
There are more details on the findings, but that's the bulk of it all.
I was on Revlimid and dexamethasone. Due to some issues with Revlimid, I am now on Velcade and dexamethasone plus taking Caltrate 600 mg twice per day.
My questions: How will the Zometa treatments effect my lesions / punched out areas. Can I expect some repair to those areas or hopefully the control of more lesion progression?
Also, wouldn't the positive treatments from the Revlimid / dexamethasone, and now being Velcade / dexamethasone, contribute to the slow down or stoppage of new lesions or damage?
Castaway.
Forums
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Multiple lesions, starting Zometa next month
Hi George,
My husband has several lesions in his skull, both arms, both legs, and ribs. Not sure how he escaped having them in his spine, but he did, fortunately. I don't know if it's because he has so many lesions, but his oncologist / hematologist told us that Zometa would not really repair his lesions. It would help prevent more damage, strengthen his bones, and reduce the possibility of fractures, but the lesions would remain.
I think I've read other Beacon posters said their lesions healed, but my husband's haven't. But between the Zometa and the carfilzomib [Kyprolis] / Revlimid / dex he took, fortunately the lesions have not worsened.
I'm glad you were able to get your dental work done first and that you can get the Zometa now.
Best wishes,
Chris M.
My husband has several lesions in his skull, both arms, both legs, and ribs. Not sure how he escaped having them in his spine, but he did, fortunately. I don't know if it's because he has so many lesions, but his oncologist / hematologist told us that Zometa would not really repair his lesions. It would help prevent more damage, strengthen his bones, and reduce the possibility of fractures, but the lesions would remain.
I think I've read other Beacon posters said their lesions healed, but my husband's haven't. But between the Zometa and the carfilzomib [Kyprolis] / Revlimid / dex he took, fortunately the lesions have not worsened.
I'm glad you were able to get your dental work done first and that you can get the Zometa now.
Best wishes,
Chris M.
-
Chris M .
Re: Multiple lesions, starting Zometa next month
Hi Castaway,
While I had fewer, less severe lesions, after a year of Zometa they had disappeared on an MRI. Also, no pain after the first infusion, though I had pain at level 7 from that first dose.
I like it, and believe it helped in my case. A bone scan a few months ago showed very good bone density. Still on it after 5 months induction with VRD (Velcade, Revlimid, dexamethasone), and post-ASCT for another 1 1/2 years.
There are alternatives now to Zometa (Aredia?) you may want to look at as well.
All the best,
Eric
While I had fewer, less severe lesions, after a year of Zometa they had disappeared on an MRI. Also, no pain after the first infusion, though I had pain at level 7 from that first dose.
I like it, and believe it helped in my case. A bone scan a few months ago showed very good bone density. Still on it after 5 months induction with VRD (Velcade, Revlimid, dexamethasone), and post-ASCT for another 1 1/2 years.
There are alternatives now to Zometa (Aredia?) you may want to look at as well.
All the best,
Eric
-
blizard49 - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2012
- Age at diagnosis: 68
Re: Multiple lesions, starting Zometa next month
I was diagnosed with multiple myeloma in January of 2011. I had 12 lytic lesions. I took Zometa, monthly, for 2 years and then, after auto SCT, I have had it once every 3 months. As of 3 months ago, my full skeleton survey showed that all lesions had healed and were stable.
-
GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Multiple lesions, starting Zometa next month
I received Zometa for 2 1/2 years - all my lesions (skull and ribs) have healed. My spine was not involved.
I found the key to receiving Zometa is hydration, hydration, hydration!! Hydrate a lot the day prior and the day of. During the infusion, I asked my nurses to allow me to receive the entire bag of saline and I drank juice along with it. Also, ask for the infusion to take 45 minutes - slow and steady lessens any side effects. Good luck!!!
I found the key to receiving Zometa is hydration, hydration, hydration!! Hydrate a lot the day prior and the day of. During the infusion, I asked my nurses to allow me to receive the entire bag of saline and I drank juice along with it. Also, ask for the infusion to take 45 minutes - slow and steady lessens any side effects. Good luck!!!
-
joannet
Re: Multiple lesions, starting Zometa next month
George,
I had a lot of bone involvement (11 compression fractures, lytic lesions on the skull, left humerus, left femur and throughout my pelvis) and have, after having two teeth pulled, been on Zometa once a month.
My neuroradiologist said I should only receive treatments for 2 years due to the fact that Zometa would be detrimental if used longer. My multiple myeloma specialist, however, said he'd like to see me receive treatments long-term based on results from a clinical trial in England. I've yet to find the results, so I'm more inclined to 2 years.
I concur with the hydration thought and will also see if I can receive the full saline solution bag during next treatment. I also find I have less bone pain now after 4 months of treatment.
Good luck!
Kully
I had a lot of bone involvement (11 compression fractures, lytic lesions on the skull, left humerus, left femur and throughout my pelvis) and have, after having two teeth pulled, been on Zometa once a month.
My neuroradiologist said I should only receive treatments for 2 years due to the fact that Zometa would be detrimental if used longer. My multiple myeloma specialist, however, said he'd like to see me receive treatments long-term based on results from a clinical trial in England. I've yet to find the results, so I'm more inclined to 2 years.
I concur with the hydration thought and will also see if I can receive the full saline solution bag during next treatment. I also find I have less bone pain now after 4 months of treatment.
Good luck!
Kully
-
kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Multiple lesions, starting Zometa next month
Thank you all so very much! I have an appointment with my oncologist in about a week so I will bring up all the comments about the hydration and saline solution. The slow and steady infusion seems to make sense also. My oncologist has some pretty comfy recliners for treatments so I wouldn't mind a slower infusion anyway.
I know he has said that I would most likely get treatments once per month for a year, then do another bone survey and go from there as far as treatments go. He also doesn't want to go any longer than 30 months at once per month. So he thought that if I went for around one year at once per month, then go to once every 2 to 3 months, I could stay on it longer.
I just noticed a few days ago that I had some pain in the lower spine area that feels like little needles poking. I just finished my first cycle of Velcade (days 1 ,4, 8 & 11 ) and 40 mg dexamethasone once per week.
Kind of strange, but I had that same sharp pain when I started Revlimid and dexamethasone during my first cycle then also. Not sure if the drugs are in attack mode with the myeloma or what. We will see what happens.
Again, Thank You All!
Castaway
I know he has said that I would most likely get treatments once per month for a year, then do another bone survey and go from there as far as treatments go. He also doesn't want to go any longer than 30 months at once per month. So he thought that if I went for around one year at once per month, then go to once every 2 to 3 months, I could stay on it longer.
I just noticed a few days ago that I had some pain in the lower spine area that feels like little needles poking. I just finished my first cycle of Velcade (days 1 ,4, 8 & 11 ) and 40 mg dexamethasone once per week.
Kind of strange, but I had that same sharp pain when I started Revlimid and dexamethasone during my first cycle then also. Not sure if the drugs are in attack mode with the myeloma or what. We will see what happens.
Again, Thank You All!
Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Multiple lesions, starting Zometa next month
My lytic lesions did heal. That does not mean the compression fractures and crushed vertebrae grew back in height, but the bone solidified. The doctors had said that the lesions would probably fill in with a sort of gristle, not normal bone. However, in fact they did heal completely, so that xray and MRI did not detect them again. That was about two years after original diagnosis, plus induction chemo with dex and Velcade, reaching near complete remission (2010), but no stem cell transplant.
However, in 2012 I relapsed too, and so there were some new (not as bad) lesion activity.
I started Zometa monthly in 2010 (March) and continued so until later in 2013, when I switched to 3-monthly, to lessen the chances of osteonecrosis of the jaw.
I think the key to lesion healing is whether the myeloma is much suppressed. If you have active myeloma, in some quantity, that is what will hinder the healing, because that is what is impeding bone regrowth. The osteoblasts are hindered, and the osteoclasts are fostered. Zometa will not really overcome that.
But if you are in some state of decent remission, then Zometa will help, plus get enough calcium, as well as vitamin D (D-3; I take 10,000 units per day, chewable mint). And it was pointed out to me that Zometa does foster bone growth and so wants calcium to feed that. So, take calcium when you get Zometa, so it doesn't try to pull calcium from elsewhere in your body. Well, that is how it was explained to me.
I would add also that exercise, such as weight lifting, may help (if done safely)--because bones grow in response to gravity/pressure. And strength exercise stimulates growth hormones, I think. Also, I think age might be a factor, because more elderly people tend to grow bone less easily, I think. (I am 53.)
But my main point is that, yes, the lesions can really heal up -- amazingly -- despite even what a doctor might say. It might take a while, but it can. As my oncologist said once, "Never say never."
One more point. At the SCCA, the doctor (now his name is slipping my mind) pointed out a study that indicated that Zometa also had some anti-MM activity, evident in long time to progression or survival. So he was recommending that patients stay on it indefinitely. He said that to me in 2010 when I had my stem cells harvested; I don't know if the recommendation has changed. But Zometa has a long half-life, so you don't have to do it monthly forever. They used to say two years, and then stop. But if you keep taking it, you can reduce the frequency, I think, to try to reduce the risk of ONJ. I think the half-life of Zometa is somewhere around 10 years, so it really lasts.
Of course, best to bounce all this off your doctor. This is what I have gleaned.
However, in 2012 I relapsed too, and so there were some new (not as bad) lesion activity.
I started Zometa monthly in 2010 (March) and continued so until later in 2013, when I switched to 3-monthly, to lessen the chances of osteonecrosis of the jaw.
I think the key to lesion healing is whether the myeloma is much suppressed. If you have active myeloma, in some quantity, that is what will hinder the healing, because that is what is impeding bone regrowth. The osteoblasts are hindered, and the osteoclasts are fostered. Zometa will not really overcome that.
But if you are in some state of decent remission, then Zometa will help, plus get enough calcium, as well as vitamin D (D-3; I take 10,000 units per day, chewable mint). And it was pointed out to me that Zometa does foster bone growth and so wants calcium to feed that. So, take calcium when you get Zometa, so it doesn't try to pull calcium from elsewhere in your body. Well, that is how it was explained to me.
I would add also that exercise, such as weight lifting, may help (if done safely)--because bones grow in response to gravity/pressure. And strength exercise stimulates growth hormones, I think. Also, I think age might be a factor, because more elderly people tend to grow bone less easily, I think. (I am 53.)
But my main point is that, yes, the lesions can really heal up -- amazingly -- despite even what a doctor might say. It might take a while, but it can. As my oncologist said once, "Never say never."
One more point. At the SCCA, the doctor (now his name is slipping my mind) pointed out a study that indicated that Zometa also had some anti-MM activity, evident in long time to progression or survival. So he was recommending that patients stay on it indefinitely. He said that to me in 2010 when I had my stem cells harvested; I don't know if the recommendation has changed. But Zometa has a long half-life, so you don't have to do it monthly forever. They used to say two years, and then stop. But if you keep taking it, you can reduce the frequency, I think, to try to reduce the risk of ONJ. I think the half-life of Zometa is somewhere around 10 years, so it really lasts.
Of course, best to bounce all this off your doctor. This is what I have gleaned.
-
sphilip - When were you/they diagnosed?: 2010
- Age at diagnosis: 49
Re: Multiple lesions, starting Zometa next month
That's an interesting theory, sphilip,
That's worth some more thought.
I know it's fashionable these days to claim that Zometa has anti-myeloma activity. A lot of myeloma specialists do. But people need to keep in mind that, most of the time, that claim is based on the results of one study, the Myeloma IX trial carried out in the UK, which compared treatment with Zometa to treatment with an older, less potent bisphosphonate that isn't even approved in the States (clodronate)
"Zometa Increases Overall Survival And Slows Bone Disease In Multiple Myeloma Patients (ASCO 2010)," The Myeloma Beacon, Jun 22, 2010
Yes, the patients treated with Zometa lived longer than those treated with clodronate. But, since we don't know whether clodronate has anti- or pro-myeloma activity, what does the trial result really tell us?
Besides, what about this study?
P Musto et al, "A multicenter, randomized clinical trial comparing zoledronic acid versus observation in patients with asymptomatic myeloma", Cancer, Oct 2008.
The results of this study led the authors to conclude that monthly treatment with Zometa "did not influence the natural history of the disease" in patients with smoldering myeloma.
Or this study?
TE Witzig et al, "A phase III randomized trial of thalidomide plus zoledronic acid versus zoledronic acid alone in patients with asymptomatic multiple myeloma", Leukemia, August 2012 (open access draft)
where the authors conclude that Zometa by itself was "unable to produce a measureable tumor response" in the patients in the study.
I'm not hating on Zometa. I just don't think there is convincing evidence that it really has true anti-myeloma activity the way that drugs like Revlimid and Velcade do. I suspect, instead, that what it does is build up a patient's bones, and that helps both the body and other drugs fight myeloma.
That would mean, however, that if you can build up the bone just as effectively with other drugs, whether they be bisphosphonates or something newer and fancier (e.g., Xgeva [Prolia, denosumab]), you'll probably get the same "anti-myeloma" effect.
Just my two pennies worth.
I think the key to lesion healing is whether the myeloma is much suppressed. If you have active myeloma, in some quantity, that is what will hinder the healing, because that is what is impeding bone regrowth. The osteoblasts are hindered, and the osteoclasts are fostered. Zometa will not really overcome that."
That's worth some more thought.
I know it's fashionable these days to claim that Zometa has anti-myeloma activity. A lot of myeloma specialists do. But people need to keep in mind that, most of the time, that claim is based on the results of one study, the Myeloma IX trial carried out in the UK, which compared treatment with Zometa to treatment with an older, less potent bisphosphonate that isn't even approved in the States (clodronate)
"Zometa Increases Overall Survival And Slows Bone Disease In Multiple Myeloma Patients (ASCO 2010)," The Myeloma Beacon, Jun 22, 2010
Yes, the patients treated with Zometa lived longer than those treated with clodronate. But, since we don't know whether clodronate has anti- or pro-myeloma activity, what does the trial result really tell us?
Besides, what about this study?
P Musto et al, "A multicenter, randomized clinical trial comparing zoledronic acid versus observation in patients with asymptomatic myeloma", Cancer, Oct 2008.
The results of this study led the authors to conclude that monthly treatment with Zometa "did not influence the natural history of the disease" in patients with smoldering myeloma.
Or this study?
TE Witzig et al, "A phase III randomized trial of thalidomide plus zoledronic acid versus zoledronic acid alone in patients with asymptomatic multiple myeloma", Leukemia, August 2012 (open access draft)
where the authors conclude that Zometa by itself was "unable to produce a measureable tumor response" in the patients in the study.
I'm not hating on Zometa. I just don't think there is convincing evidence that it really has true anti-myeloma activity the way that drugs like Revlimid and Velcade do. I suspect, instead, that what it does is build up a patient's bones, and that helps both the body and other drugs fight myeloma.
That would mean, however, that if you can build up the bone just as effectively with other drugs, whether they be bisphosphonates or something newer and fancier (e.g., Xgeva [Prolia, denosumab]), you'll probably get the same "anti-myeloma" effect.
Just my two pennies worth.
Re: Multiple lesions, starting Zometa next month
George,
I've been on Zometa for 9 months and I've had a reaction almost every month. I experience chills and malaise the day after the infusion. The fist infusion was the worst, with fever and severe chills.
This is what I've learned helps me. Ask that the infusion run time be at least 45 minutes. I take 25 mg Benadryl [diphenhydramine] about one hour prior to infusion, and I take 1000 mg Tylenol [acetaminophen, paracetamol] three time daily the day of and the day after infusion. Hydrate well the day before and the day of infusion.
Good luck!
I've been on Zometa for 9 months and I've had a reaction almost every month. I experience chills and malaise the day after the infusion. The fist infusion was the worst, with fever and severe chills.
This is what I've learned helps me. Ask that the infusion run time be at least 45 minutes. I take 25 mg Benadryl [diphenhydramine] about one hour prior to infusion, and I take 1000 mg Tylenol [acetaminophen, paracetamol] three time daily the day of and the day after infusion. Hydrate well the day before and the day of infusion.
Good luck!
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
17 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects