Hi All
My husband got a call from doctors office to book him in for Zometa.
It is now a 3+ months post stem cell transplant and his myeloma numbers are not zero yet but apparently they are still coming coming down slowly - so it is moving in the right direction. He has never shown any bone involvement with his myeloma so trying to understand why the doctor would want him on zometa now? He is currently only on thalidomide.
My husband will chat the doctor next week but I was just curious to see what feedback the forum had.
I read somewhere on the forum that they were told that myeloma does not like zometa?
Thanks in advance for your feedback, advice, input!!
Forums
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Why Zometa?
I think it is the standard for multiple myeloma patients who show bone damage. I'm due to start it next week. I've been in a CR for 3 1/2 years following a stem cell transplant, but 4 months ago my numbers started a slow rise. My lambda light chain is 54 mg/dl, low, but I fractured my clavicle due to a tumor.
I suspect that your doctor might have either observed something, or he's being cautious. While my clavicle break was very discomforting and slightly debilitating, I can only imagine what it could have been had it been an arm, leg, or pelvic break.
I suspect that your doctor might have either observed something, or he's being cautious. While my clavicle break was very discomforting and slightly debilitating, I can only imagine what it could have been had it been an arm, leg, or pelvic break.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Why Zometa?
Hi Sharon,
I think this article may answer some of your questions:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease"
https://myelomabeacon.org/news/2013/06/26/treatment-recommendations-multiple-myeloma-bone-disease/
Key quotes:
"The experts recommend that bisphosphonate treatment should be started in all multiple myeloma patients receiving anti-myeloma therapy, regardless of whether they show detectable bone lesions on x-rays, and in myeloma patients with osteoporosis or osteopenia (somewhat reduced bone density) resulting from myeloma."
"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."
Do the recommendations more or less match what your husband's doctor has recommended?
I think this article may answer some of your questions:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease"
https://myelomabeacon.org/news/2013/06/26/treatment-recommendations-multiple-myeloma-bone-disease/
Key quotes:
"The experts recommend that bisphosphonate treatment should be started in all multiple myeloma patients receiving anti-myeloma therapy, regardless of whether they show detectable bone lesions on x-rays, and in myeloma patients with osteoporosis or osteopenia (somewhat reduced bone density) resulting from myeloma."
"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."
Do the recommendations more or less match what your husband's doctor has recommended?
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JimNY
Re: Why Zometa?
I think that Zometa (zoledronic acid) and Aredia (pamidronate) are the least important aspects of his myeloma care. The best way to treat a patient's myeloma bone disease is to treat the patient's myeloma!
That said we often prescribe Zometa to patients who have never had severe renal failure as part of their initial treatment. I am generally cautious about giving it long term, especially in patients whose disease is under control -- a state he seems to be in after stem cell transplantation. In fact there is a randomized trial with Aredia showing no benefit after stem cell transplant.
But hold the phones -- did you say thalidomide? What is he doing on thalidomide? The data for thalidomide after transplant is rotten. Sounds like a good time to phone a friend, and get a second opinion.
That said we often prescribe Zometa to patients who have never had severe renal failure as part of their initial treatment. I am generally cautious about giving it long term, especially in patients whose disease is under control -- a state he seems to be in after stem cell transplantation. In fact there is a randomized trial with Aredia showing no benefit after stem cell transplant.
But hold the phones -- did you say thalidomide? What is he doing on thalidomide? The data for thalidomide after transplant is rotten. Sounds like a good time to phone a friend, and get a second opinion.
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Dr. Craig Hofmeister - Name: Craig C. Hofmeister, M.D.
Re: Why Zometa?
Dr. Hofmeister,
This is a great reply:
"I think that Zometa .... But hold the phones -- did you say thalidomide? What is he doing on thalidomide? The data for thalidomide after transplant is rotten. Sounds like a good time to phone a friend, and get a second opinion."--
------------------
It is great seeing you cut right to the chase on your opinion of thalidomide post ASCT and hearing your philosophy on Zometa on such a concise reply.
Glad to see you are on this forum...and thank you for taking your precious time to share your opinions.
This is a great reply:
"I think that Zometa .... But hold the phones -- did you say thalidomide? What is he doing on thalidomide? The data for thalidomide after transplant is rotten. Sounds like a good time to phone a friend, and get a second opinion."--
------------------
It is great seeing you cut right to the chase on your opinion of thalidomide post ASCT and hearing your philosophy on Zometa on such a concise reply.
Glad to see you are on this forum...and thank you for taking your precious time to share your opinions.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why Zometa?
Dr Craig that is an awesome response! Sometimes in medicine it seems that the professionals are almost required to tiptoe around their colleagues feelings. Its refreshing to hear you make such a strong statement that can only benefit the original poster.
Re: Why Zometa?
I hope this isn't too far off the discussion but I am unable to take Zometa. Had rash, hoarseness and swelling after the initial bone pain had subsided and the manufacturer basically said don't take this again. Are there other options?
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Susan S.
Re: Why Zometa?
I guess I'm in the minority here, but I feel like we should be more cautious when it comes to judging the decision made by the physician treating Sharon's husband to put him with thalidomide maintenance therapy.
One of the main reasons I feel that way is that Sharon, like a number of other regulars here in the forum, isn't in the U.S. She's in Australia, at least that is what she wrote here:
https://myelomabeacon.org/forum/newly-diagnosed-stage-3-t2201.html
(Google is wonderful!)
We've seen a lot of times here in the forum that treatment options outside the U.S. are often more limited than within the U.S. Revlimid maintenance is much less common outside the U.S. because most countries won't pay for it. I don't think it's an option, for example, in Australia.
Also, upfront therapy options are also different outside the U.S., which can have an effect on the treatment choices a physician will make for a myeloma patient after his or her stem cell transplant.
Finally, in situations like this, all of us are operating with a lot less information than the physician who made the decision to treat a patient in a particular way. Maybe the patient responded well to an induction therapy that included thalidomide. Or, maybe the patient didn't respond all that great, but also didn't develop peripheral neuropathy while on the thalidomide, so checking to see whether thalidomide does some more as maintenance therapy seems like a reasonable choice.
So I, for one, appreciate some caution in judging the treatment decision made by a patient's physician.
(We could also debate whether thalidomide truly is all that bad as maintenance therapy for stem cell transplant recipients, but that's a whole different bag of worms.)
One of the main reasons I feel that way is that Sharon, like a number of other regulars here in the forum, isn't in the U.S. She's in Australia, at least that is what she wrote here:
https://myelomabeacon.org/forum/newly-diagnosed-stage-3-t2201.html
(Google is wonderful!)
We've seen a lot of times here in the forum that treatment options outside the U.S. are often more limited than within the U.S. Revlimid maintenance is much less common outside the U.S. because most countries won't pay for it. I don't think it's an option, for example, in Australia.
Also, upfront therapy options are also different outside the U.S., which can have an effect on the treatment choices a physician will make for a myeloma patient after his or her stem cell transplant.
Finally, in situations like this, all of us are operating with a lot less information than the physician who made the decision to treat a patient in a particular way. Maybe the patient responded well to an induction therapy that included thalidomide. Or, maybe the patient didn't respond all that great, but also didn't develop peripheral neuropathy while on the thalidomide, so checking to see whether thalidomide does some more as maintenance therapy seems like a reasonable choice.
So I, for one, appreciate some caution in judging the treatment decision made by a patient's physician.
(We could also debate whether thalidomide truly is all that bad as maintenance therapy for stem cell transplant recipients, but that's a whole different bag of worms.)
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JimNY
Re: Why Zometa?
JimNY,
I agree that the forum should be sensitive to the global realities of which drugs are available in any given country. I immediately think that a person might likely reside outside of the USA if I hear thalidomide (and some other drugs that I won't mention here) come up in a discussion...even though these drugs may have a place in treating a patient anywhere in the world, depending on one's unique circumstances.
But, I do appreciate having a quick summary of general appropriateness (or inappropriateness) of a given drug for a given situation from a doctor to consider here, regardless of the drug availability issues a given country.
I say this because I read a lot about myeloma and I must admit that I find it hard to keep track of what all the various study's conclusions are for a given drug in a given situation.
In Dr. Hofmeister's response, I at least came away thinking and being likely to remember that one ought to at least question the use of thalidomide in a post ASCT setting , even though I'm not sure what other options are available in Australia for this phase of treatment??? I also will remember that I might question the prolonged use of Zometa in the future.
Again, your points are well taken and I always enjoy reading your opinions.
Sharon, I hope things end up well for your hubby. Perhaps others living in Australia might share their experiences with this stage of treatment and what drugs they utilized.
I agree that the forum should be sensitive to the global realities of which drugs are available in any given country. I immediately think that a person might likely reside outside of the USA if I hear thalidomide (and some other drugs that I won't mention here) come up in a discussion...even though these drugs may have a place in treating a patient anywhere in the world, depending on one's unique circumstances.
But, I do appreciate having a quick summary of general appropriateness (or inappropriateness) of a given drug for a given situation from a doctor to consider here, regardless of the drug availability issues a given country.
I say this because I read a lot about myeloma and I must admit that I find it hard to keep track of what all the various study's conclusions are for a given drug in a given situation.
In Dr. Hofmeister's response, I at least came away thinking and being likely to remember that one ought to at least question the use of thalidomide in a post ASCT setting , even though I'm not sure what other options are available in Australia for this phase of treatment??? I also will remember that I might question the prolonged use of Zometa in the future.
Again, your points are well taken and I always enjoy reading your opinions.
Sharon, I hope things end up well for your hubby. Perhaps others living in Australia might share their experiences with this stage of treatment and what drugs they utilized.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why Zometa?
Could someone provide a link to the study Dr. Hofmeister refers to regarding the effectiveness of Aredia post-transplant?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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