Has anyone read the possible side effects for Zometa, especially related to multiple myeloma (increased risk of ONJ (osteonecrosis of the jaw), but also this below, SPECIFICALLY related to multiple myeloma, in their own words:
"Common side effects for patients with multiple myeloma and bone metastases due to solid tumors include bone pain, nausea, fatigue, anemia, fever, vomiting, constipation, shortness of breath, diarrhea, weakness, muscle pain, anorexia, cough, joint pain, lower-limb swelling, WORSENING OF YOUR CANCER, headache, dizziness (excluding vertigo), insomnia, decreased weight, back pain, numbness/tingling, and abdominal pain. These side effects are listed regardless of any potential association with the medications used in registration studies of ZOMETA in bone metastases patients."
This is taken directly from their website: http://www.us.zometa.com/index.jsp#isi
Oncologist treating multiple myeloma automatically put patients on this. My mother took one injection, came home, read the side effects, and when she saw the words WORSENING OF YOUR CANCER related to multiple myeloma, she refused to take it any more.
Are any of the oncologist who come to Myeloma Beacon familiar with this??
Two oncologists that my mother has seen had not a clue that this was listed by the makers of Zometa as a side effect. This drug is given to help bones and bone pain but also is supposed to HELP the myeloma... yet at the same time, it can possibly make the myeloma worse? This seems like upside down world stuff...
Has anyone else with multiple myeloma/SMM, etc. ever seen this or questioned it? Does it concern anyone... or is this another instance where some feel the risks outweigh the benefits?
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Re: Zometa: Has anyone read the side effects?
Hello Violet,
Welcome to the forum.
I'm sure there are a number of people who will be able to share their thoughts with you regarding Zometa. Just as an FYI, however, I wanted to let you know that there was a very useful discussion about Zometa just recently which you can read in this forum thread:
https://myelomabeacon.org/forum/zometa-vs-reclast-t646.html
I think that, in particular, you'll find the second page of the thread useful.
Also, as you may know, Zometa belongs to a class of drugs known as bisphosphonates, and these drugs generally are believed by myeloma specialists to be helpful in the treatment of myeloma. It also is true, however, that these drugs have side effects, including a challenging side effect known technically as "osteonecrosis of the jaw", which basically is a decaying of the jaw bone.
You can read here
https://myelomabeacon.org/tag/bisphosphonates/
number of news articles related to this class of drugs that also may interest you.
Good luck!
Welcome to the forum.
I'm sure there are a number of people who will be able to share their thoughts with you regarding Zometa. Just as an FYI, however, I wanted to let you know that there was a very useful discussion about Zometa just recently which you can read in this forum thread:
https://myelomabeacon.org/forum/zometa-vs-reclast-t646.html
I think that, in particular, you'll find the second page of the thread useful.
Also, as you may know, Zometa belongs to a class of drugs known as bisphosphonates, and these drugs generally are believed by myeloma specialists to be helpful in the treatment of myeloma. It also is true, however, that these drugs have side effects, including a challenging side effect known technically as "osteonecrosis of the jaw", which basically is a decaying of the jaw bone.
You can read here
https://myelomabeacon.org/tag/bisphosphonates/
number of news articles related to this class of drugs that also may interest you.
Good luck!
Re: Zometa: Has anyone read the side effects?
I think like any type of treatment you have to balance the risks and the benefits. When the benefits outweigh the risks it is favourable to go ahead.
In my case I had evidence of bone disease at diagnosis (lytic lesions) I did treatment for a few months and then stopped the pamidronate. Felt increasing back pain, and after a scan, more lesions were noted so I started it again, and the backpain resolved. I would prefer not to take these drugs, but I feel they are helping my bones to fight of the myeloma damage, and heal the damage I already had.
In my case I had evidence of bone disease at diagnosis (lytic lesions) I did treatment for a few months and then stopped the pamidronate. Felt increasing back pain, and after a scan, more lesions were noted so I started it again, and the backpain resolved. I would prefer not to take these drugs, but I feel they are helping my bones to fight of the myeloma damage, and heal the damage I already had.
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guest
Re: Zometa: Has anyone read the side effects?
Dear Violet,
Let me address the issue of the cancer being made worse by zometa. This is just not the case. When a drug is under development, the company is obligated to report adverse reactions and events that occur while a patient is on the drug of interest whether they are related to the drug or not.. My guess is that patients with bad, high risk myeloma had progression of their disease while on zometa and this got reported even though it had nothing to do with the zometa (and it is possible that an overly busy research associate inappropriately attributed the disease progression to the zometa).
A very large study out of the UK recently demonstrated that patients treated with zometa lived on average 5 and a half months longer than those who were treated with the less potent bisphosphonate drug, clodronate. As such, if anything, zometa has a beneficial effect on the cancer in the case of myeloma -- not a negative effect. It also reduces the risk of bone complications of myeloma such as fractures.
Now, there are certainly real risks associated with zometa, including osteonecrosis of the jaw and kidney injury -- these are legitimate side effects but fortunately not common with appropriate caution. As such, the benefits and risks always need to be weighed in any individual case. In your Mom's case, I would strongly urge her to not stop her zometa based on erroneous information that her cancer can be made worse.
I hope this helps. Good luck!
Pete V.
Let me address the issue of the cancer being made worse by zometa. This is just not the case. When a drug is under development, the company is obligated to report adverse reactions and events that occur while a patient is on the drug of interest whether they are related to the drug or not.. My guess is that patients with bad, high risk myeloma had progression of their disease while on zometa and this got reported even though it had nothing to do with the zometa (and it is possible that an overly busy research associate inappropriately attributed the disease progression to the zometa).
A very large study out of the UK recently demonstrated that patients treated with zometa lived on average 5 and a half months longer than those who were treated with the less potent bisphosphonate drug, clodronate. As such, if anything, zometa has a beneficial effect on the cancer in the case of myeloma -- not a negative effect. It also reduces the risk of bone complications of myeloma such as fractures.
Now, there are certainly real risks associated with zometa, including osteonecrosis of the jaw and kidney injury -- these are legitimate side effects but fortunately not common with appropriate caution. As such, the benefits and risks always need to be weighed in any individual case. In your Mom's case, I would strongly urge her to not stop her zometa based on erroneous information that her cancer can be made worse.
I hope this helps. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Zometa: Has anyone read the side effects?
Hi,
I have discussed Zometa with my oncologist--at the moment I'm in the maintenance phase of a clinical trial and get Zometa once a month (along with Revlimid and dexamethasone.) He has told me that due to the potential side effects relating to the jaw, he will take me off Zometa after 1-2 years. At that time I don't know if I'll switch to something else for bone strength; I guess I'll wait and see what he says at that time.
Since the disease has primarily affected my bones in my case--I broke my scapula last year and there are lesions in my arms and legs, plus others (smaller) elsewhere--I feel it's worth the small risks for the next couple of years to try to keep more lesions from forming and to strengthen my weakened bones. My orthopedic oncologist has not seen any new lesions develop since I started treatment.
Karen
I have discussed Zometa with my oncologist--at the moment I'm in the maintenance phase of a clinical trial and get Zometa once a month (along with Revlimid and dexamethasone.) He has told me that due to the potential side effects relating to the jaw, he will take me off Zometa after 1-2 years. At that time I don't know if I'll switch to something else for bone strength; I guess I'll wait and see what he says at that time.
Since the disease has primarily affected my bones in my case--I broke my scapula last year and there are lesions in my arms and legs, plus others (smaller) elsewhere--I feel it's worth the small risks for the next couple of years to try to keep more lesions from forming and to strengthen my weakened bones. My orthopedic oncologist has not seen any new lesions develop since I started treatment.
Karen
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nykaren24
Re: Zometa: Has anyone read the side effects?
My husband got ONJ quite badly. His doctor at the time was obviously not aware of the side effects, thought he had a toothache and sent him to a dentist, who promptly pulled out several of his teeth, made it considerably worse and the solution they thought was to keep cutting away the dead bone. When they once again wanted to cut away bone for a third time, I told him to refuse to let them. So now he's left with a big piece of jaw bone missing and having had healthy teeth pulled out for nothing. Now, of course, ONJ is known about and dentists wouldn't dare touch a person taking biphosphonates. So yes, there are side effects but now people know much more about them and can modify treatment according to reaction.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
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