Thank you everyone for the replies. Yes, we are in Australia.
Admittedly your replies have left a knot in my stomach. I honestly thought the thalidomide regime post transplant was perfectly fine. I had done some research and saw a few people on the forum on it and thought it fairly standard. Did I drop the ball?
His paraprotein/m-spike was 10g/L (1.0g/dL) post auto transplant. It went down to 8g/L (0.8g/dL) over the 3 months post transplant without any treatment. My husband's doctor (who is a haemotologist and oncologist) put him on thalidomide to drive the numbers down further. We got the feeling that he felt it was going down too slowly and wanted to proactively drive it down more.
My husband was feeling great at the end of the 3 months (except for a horrid attack of shingles). He has shown no signs of bone involvement throughout. At initial diagnosis his kidneys were showing a little trouble, but I believe all the numbers show that his kidneys are fine now and apparently all his other numbers are perfect.
The doctor also said that my husband's light chains were perfect (or "good" - cannot remember the exact words), but he appeared to be comfortable with all the numbers. I didn't ask for a copy of the blood results as we both felt comfortable with what he was saying - it was an easy appointment.
Before his transplant (he has only had 1 transplant to date) he was on a VCD regime which worked great initially, but then slowed down. But it did bring his numbers down from 78g/L (7.8g/dL) to 24g/L (2.4g/dL).
Would really appreciate some further input based on all of this before I discuss it with my husband. Given all of this what in your opinion is the perfect regimen for him to be on at the moment?
I would like to add that along the process we have found his doctor to be nothing short of incredibly dedicated and passionate. He is respected by all that we speak to.
I think I should maybe put another post up about post stem cell transplant treatments for Australians...?
Thanks again!
Sharon
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?
Hi Sharon,
Anticipating that this question might come up from fellow Australians that participate on this forum, where may I ask do you live in Australia?
This might offer you some more insights on the maintenance side of things:
https://myelomabeacon.org/news/2012/07/27/maintenance-therapy-for-multiple-myeloma-asco-2012/
http://asheducationbook.hematologylibrary.org/content/2013/1/496.full
I'm going to guess that you already visited this Australia specific site:
http://www.myeloma.org.au/
...and have reviewed this document regarding the Australian treatment protocols?
http://www.myeloma.org.au/LinkClick.aspx?fileticket=55A0pOby0WQ%3d&tabid=40
Anticipating that this question might come up from fellow Australians that participate on this forum, where may I ask do you live in Australia?
This might offer you some more insights on the maintenance side of things:
https://myelomabeacon.org/news/2012/07/27/maintenance-therapy-for-multiple-myeloma-asco-2012/
http://asheducationbook.hematologylibrary.org/content/2013/1/496.full
I'm going to guess that you already visited this Australia specific site:
http://www.myeloma.org.au/
...and have reviewed this document regarding the Australian treatment protocols?
http://www.myeloma.org.au/LinkClick.aspx?fileticket=55A0pOby0WQ%3d&tabid=40
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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?
Hi Sharon,
I agree with JimNY. IMO Dr. Hofmeister was out of line to give the kind of response he did without knowing more about the individual case. I would expect more from a medical professional than that response. I certainly learned nothing from that post.
Here is a link to the International Myeloma Working Groups statement on maintenance therapy to go along with the links Multibilly provided. There is an entire section related to thalidomide maintenance.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321864/
"I would like to add that along the process we have found his doctor to be nothing short of incredibly dedicated and passionate. He is respected by all that we speak to."
Do not let the comments of anyone in this thread make you think you are getting suboptimal care or that you are not being treated by a great doctor. Despite all the "hype" around the novel agents there are not any statistics that I am aware of that US patients have a significantly longer overall survival than myeloma patients in Europe, etc. Take note of this comment in Dr. Durie's blog post on October 10, 2013 on the IMF website:
"Rather remarkably, the outcomes in Asia and Latin America are quite good, and have survival rates comparable to those in the US and Europe, despite much later diagnosis and considerably reduced access to the newer IMiDs and proteasome inhibitors. Revlimid is still not approved in Korea and Brazil, for example, and there is extremely limited access to pomalidomide and Carfilzomib, both approved by the FDA in the US."
Mark
I agree with JimNY. IMO Dr. Hofmeister was out of line to give the kind of response he did without knowing more about the individual case. I would expect more from a medical professional than that response. I certainly learned nothing from that post.
Here is a link to the International Myeloma Working Groups statement on maintenance therapy to go along with the links Multibilly provided. There is an entire section related to thalidomide maintenance.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321864/
"I would like to add that along the process we have found his doctor to be nothing short of incredibly dedicated and passionate. He is respected by all that we speak to."
Do not let the comments of anyone in this thread make you think you are getting suboptimal care or that you are not being treated by a great doctor. Despite all the "hype" around the novel agents there are not any statistics that I am aware of that US patients have a significantly longer overall survival than myeloma patients in Europe, etc. Take note of this comment in Dr. Durie's blog post on October 10, 2013 on the IMF website:
"Rather remarkably, the outcomes in Asia and Latin America are quite good, and have survival rates comparable to those in the US and Europe, despite much later diagnosis and considerably reduced access to the newer IMiDs and proteasome inhibitors. Revlimid is still not approved in Korea and Brazil, for example, and there is extremely limited access to pomalidomide and Carfilzomib, both approved by the FDA in the US."
Mark
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Mark
Re: Why Zometa?
Thanks Mark - I really appreciate your comments. If what Dr Hofmeister said was the brutal truth then we need to know as we honestly thought my husband was on the right track. I just want to know what I am talking about and don't want to discuss it with hubby or question his doctor without a full understanding. Thanks for the link - will be reading up today! My husband and son have headed out of town for the week so will have lots of time to do some reading.
MountainGuy - we are on the Gold Coast. Thanks for all the info - will be wading through it as hubby and son are in Melbourne this week.
Take Care!
MountainGuy - we are on the Gold Coast. Thanks for all the info - will be wading through it as hubby and son are in Melbourne this week.
Take Care!
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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?
Sharon - I am truly sorry if the discussion in this thread has caused you any distress. I think it is good that you are asking questions about your husband's treatment, and I encourage you to keep doing so. I also feel, however, that there are almost certainly sound reasons for the decisions your husband's doctor has made so far about his treatment.
Multibilly - Thank you for your follow up and I can only return the favor and say that I look forward to what you post here in the forum. That said, I think we'll have to agree to disagree on the value of catchy standalone soundbites. One of the reasons I appreciate this forum, and choose to contribute to it, is because it's more than just soundbites. I don't mind a snappy summary, but I do object if no rationale, evidence, or context is given for it. I particularly don't like it when the statement is made mainly because it seems cute, with no thought about the circumstances of the person who asked the question, or the impact such a response will have on that person.
Mark - Thanks, as well, for sharing your thoughts. I always look forward to your posts here. I think you are being a bit too accepting, however, of some of the generalities that are tossed around about the survival of U.S. myeloma patients versus those in other countries. There is, in fact, some hard evidence on the subject, and I'll share it in a separate post here. I also think you need to keep in mind that many myeloma specialists are likely to dance around the subject because it's a very international community, and people don't want to offend each other.
Generally - As for the pros and cons of thalidomide maintenance, I can't find anything to support the view that using it after a stem cell transplant is a horrible idea. Maybe I'm overlooking something, but I think the main criticism of post-transplant thalidomide maintenance therapy is that it's probably not a good idea for patients with higher-risk chromosomal abnormalities.
The links that have been provided in the postings above are okay, but you have to keep in mind that the IMWG statement on the subject is wishy washy because maintenance therapy is a political football. Other overviews written by a single author, or a couple of authors, are going to reflect the particular opinions and biases of those limited numbers of authors.
What you need, instead, are actual studies with hard data, or guidelines that make more definitive statements. Here are some suggestions:
First, the recent (2014) European myeloma diagnosis and treatment guidelines say (I've left out the notations about evidence levels):
"Recommendation: thalidomide or lenalidomide maintenance post ASCT increases PFS and possibly OS. Bortezomib-based regimens are a valuable treatment option, especially for patients who failed VGPR or CR/nCR after ASCT."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912952/
A 2012 analysis of data from the large UK trial that included arms with, and without, thalidomide maintenance, concluded the following:
"Thalidomide maintenance significantly improves PFS and can be associated with improved OS. iFISH testing is important in assessing the clinical impact of maintenance therapy. Overview analysis demonstrated that thalidomide maintenance was associated with a significant late OS benefit."
http://bloodjournal.hematologylibrary.org/content/119/1/7.long
Based on my reading of the results, I don't see any indication that the authors felt that thalidomide post-stem cell transplant is a bad idea except, perhaps, in patients with high-risk chromosomal abnormalities.
There's a more recent update of the above study that is not quite as focused, however, on thalidomide maintenance:
http://clincancerres.aacrjournals.org/content/19/21/6030.long
A Brazilian study published in 2012 specifically compared maintenance with thalidomide plus dex versus just dexamethasone and found a definite advantage in progression-free survival for the thalidomide+dex arm, and a trend to an overall survival advantage as well:
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23274/full
A Canadian study published in 2013 reported on a large trial that looked at post-transplant thalidomide+prednisone versus observation (no treatment). It found a significant advantage, once again, in progression-free survival for the thalidomide maintenance arm, but no statistically significant overall survival advantage:
http://bloodjournal.hematologylibrary.org/content/121/9/1517.long
Finally, a 2012 meta analysis of several studies looking at thalidomide maintenance concludes: "These results suggest that thalidomide maintenance with corticosteroids is effective in prolonging survival for multiple myeloma."
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0049107/
Multibilly - Thank you for your follow up and I can only return the favor and say that I look forward to what you post here in the forum. That said, I think we'll have to agree to disagree on the value of catchy standalone soundbites. One of the reasons I appreciate this forum, and choose to contribute to it, is because it's more than just soundbites. I don't mind a snappy summary, but I do object if no rationale, evidence, or context is given for it. I particularly don't like it when the statement is made mainly because it seems cute, with no thought about the circumstances of the person who asked the question, or the impact such a response will have on that person.
Mark - Thanks, as well, for sharing your thoughts. I always look forward to your posts here. I think you are being a bit too accepting, however, of some of the generalities that are tossed around about the survival of U.S. myeloma patients versus those in other countries. There is, in fact, some hard evidence on the subject, and I'll share it in a separate post here. I also think you need to keep in mind that many myeloma specialists are likely to dance around the subject because it's a very international community, and people don't want to offend each other.
Generally - As for the pros and cons of thalidomide maintenance, I can't find anything to support the view that using it after a stem cell transplant is a horrible idea. Maybe I'm overlooking something, but I think the main criticism of post-transplant thalidomide maintenance therapy is that it's probably not a good idea for patients with higher-risk chromosomal abnormalities.
The links that have been provided in the postings above are okay, but you have to keep in mind that the IMWG statement on the subject is wishy washy because maintenance therapy is a political football. Other overviews written by a single author, or a couple of authors, are going to reflect the particular opinions and biases of those limited numbers of authors.
What you need, instead, are actual studies with hard data, or guidelines that make more definitive statements. Here are some suggestions:
First, the recent (2014) European myeloma diagnosis and treatment guidelines say (I've left out the notations about evidence levels):
"Recommendation: thalidomide or lenalidomide maintenance post ASCT increases PFS and possibly OS. Bortezomib-based regimens are a valuable treatment option, especially for patients who failed VGPR or CR/nCR after ASCT."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912952/
A 2012 analysis of data from the large UK trial that included arms with, and without, thalidomide maintenance, concluded the following:
"Thalidomide maintenance significantly improves PFS and can be associated with improved OS. iFISH testing is important in assessing the clinical impact of maintenance therapy. Overview analysis demonstrated that thalidomide maintenance was associated with a significant late OS benefit."
http://bloodjournal.hematologylibrary.org/content/119/1/7.long
Based on my reading of the results, I don't see any indication that the authors felt that thalidomide post-stem cell transplant is a bad idea except, perhaps, in patients with high-risk chromosomal abnormalities.
There's a more recent update of the above study that is not quite as focused, however, on thalidomide maintenance:
http://clincancerres.aacrjournals.org/content/19/21/6030.long
A Brazilian study published in 2012 specifically compared maintenance with thalidomide plus dex versus just dexamethasone and found a definite advantage in progression-free survival for the thalidomide+dex arm, and a trend to an overall survival advantage as well:
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23274/full
A Canadian study published in 2013 reported on a large trial that looked at post-transplant thalidomide+prednisone versus observation (no treatment). It found a significant advantage, once again, in progression-free survival for the thalidomide maintenance arm, but no statistically significant overall survival advantage:
http://bloodjournal.hematologylibrary.org/content/121/9/1517.long
Finally, a 2012 meta analysis of several studies looking at thalidomide maintenance concludes: "These results suggest that thalidomide maintenance with corticosteroids is effective in prolonging survival for multiple myeloma."
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0049107/
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JimNY
Re: Why Zometa?
Nice follow up Jim. I think all the points you make are valid.
Sharon, sorry to see you caught in the middle of all this and hearing that you are experiencing angst over this, as this clearly wasn't the intention of our follow up comments. But if this thread does promote a deeper discussion with your doctor, as well as some deeper research on the subjects, then that would be a positive.
Best of luck to you and your hubby. Let us know what you end up deciding to do.
Sharon, sorry to see you caught in the middle of all this and hearing that you are experiencing angst over this, as this clearly wasn't the intention of our follow up comments. But if this thread does promote a deeper discussion with your doctor, as well as some deeper research on the subjects, then that would be a positive.
Best of luck to you and your hubby. Let us know what you end up deciding to do.
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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?
Sharon it appears that you can ask your doctor why he chose thalidomide and simply point out that it seems hard to find anyone else with experience using it. I wouldn't think he would have a problem with it or feel you are questioning his decision.
As far as the thalidomide controversy goes, not everyone is on a maintenance regimen. I didn't receive one and had CR for 3 1/3 years following my SCT. The key might be that the doctor wanted to speed up the regression and in that sense possibly thalidomide offers an advantage. It is apparently being used as a supplement.
As far as the thalidomide controversy goes, not everyone is on a maintenance regimen. I didn't receive one and had CR for 3 1/3 years following my SCT. The key might be that the doctor wanted to speed up the regression and in that sense possibly thalidomide offers an advantage. It is apparently being used as a supplement.
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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?
I too did not intend to cause worry or distress by my comment, if that's the case, I apologize. But it does get hard sometimes to get doctors to just cut to the chase, and in that regard I still find the directness of Dr. Hofmeister to be refreshing. I realize now that may not be the best for everyone. Medically, we've really been through hell the last few years, and as shocking as it may be sometimes, I want direct answers, without tap dancing around. For my husband personally, the years may be very limited, directness is all we want to work with.
Re: Why Zometa?
This forum is amazing and I thank you all from the bottom of my heart for all your feedback.
Whilst the initial feedback may have left me concerned, I am feeling more at ease as I now strongly suspect that the doctor is using it as we thought, which is to try push the numbers down quicker instead of just leaving it (which he appeared to be toying with).
I will however be researching it a lot more over the course of the week and then discuss it with my husband when he gets back so that we can raise it with the doctor.
I am also going to post a separate question tonight “Australian post stem cell maintenance experiences” to see what else is happening around here.
JimNY – your feedback was been invaluable – you are a star! Thank you so much – it has given me all the information that we could need to weigh up the pro’s and con’s.
Really does seem like the maintenance period is an “Art” and there is no one perfect solution that fits all?
Take Care
Sharon
Whilst the initial feedback may have left me concerned, I am feeling more at ease as I now strongly suspect that the doctor is using it as we thought, which is to try push the numbers down quicker instead of just leaving it (which he appeared to be toying with).
I will however be researching it a lot more over the course of the week and then discuss it with my husband when he gets back so that we can raise it with the doctor.
I am also going to post a separate question tonight “Australian post stem cell maintenance experiences” to see what else is happening around here.
JimNY – your feedback was been invaluable – you are a star! Thank you so much – it has given me all the information that we could need to weigh up the pro’s and con’s.
Really does seem like the maintenance period is an “Art” and there is no one perfect solution that fits all?
Take Care
Sharon
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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?
Shaznics I look forward to your new thread on Australian therapy experiences. I am currently being treated at Royal Perth Hospital with cyclophosphamide / Velcade / dex / Zometa and a bunch of other stuff to ward off the side effects, like gout, shingles, reflux, sleeplessness.
I am only on cycle2 of my induction therapy, but I feel like a myeloma 'black hole' as I suck in as much data and knowledge as possible before my ASCT in June. To Multibilly, JimNY and all contributors thank you for the links and the food for thought.
Andy
I am only on cycle2 of my induction therapy, but I feel like a myeloma 'black hole' as I suck in as much data and knowledge as possible before my ASCT in June. To Multibilly, JimNY and all contributors thank you for the links and the food for thought.
Andy
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
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