Hello All,
I just wanted to share some info that my oncologist shared with me yesterday at my monthly visit. (also was Velcade treatment #4 with 10 days off. Love those 10 days off. My wife and I are going away for a few days for our 42nd wedding anniversary. We both need time away from the norm).
He has told me that he has had several more multiple myeloma patients over the last few months. That's quite interesting since I live in a small community. So he felt that he should attend a multiple myeloma study group in Chicago last week. That's quite a way to go for him having his practice here on the central coast of California. He's the best.
He still needs to fully read and address the possible new treatment of Velcade / dexamethasone. What he told me in a nutshell was a study shows that if you are taking Velcade and dexamethasone, you can lessen the effects of neuropathy by taking dexamethasone over two days. One day would be when you receive your injection for Velcade and then the day after the injection. In my case, I take 40 mg once per week so that would be 20 mg each day.
He also mentioned that there were other benefits but he wanted to fully read and understand all the information in the study first. He will fill me in on this in a few days when he has more time to go over everything. So i will share more info when he lets me know.
Has anyone else heard of this possible treatment?
Castaway
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: Dexamethasone can be given over two days
Castaway-
Please get a 2nd opinion from a myeloma specialist. That way your local oncologist will have someone who he can coordinate your care with and ask questions about treatment. Most specialists are more than happy to consult with local oncologists. Splitting the dose of dex is quite common from what I have read on this forum and other sites, I don't get Velcade as part of my treatment.
I'm glad that your current oncologist is taking a proactive position about learning more about myeloma, but he will never be able to keep up with all of the changes that are occurring in the field and also keep up with the research and treatment recommendations for all of the other cancers that he treats.
Is he going to the American Society of Hematologists (ASH) conference next month in, I think, San Diego? This is an extremely important conference to go to. There will be a lot of platform and poster presentations about myeloma research. This conference occurs every December in a different city each year. The other important conference is in June, American Society of Clinical Oncologists (ASCO). There also are a lot of presentations on myeloma at that conference each year, too.
The forum has daily updates on what is going on at each of the conferences as they happen and a synopsis of the research that is presented. They usually post the abstracts of the myeloma research that is going to be presented during the conferences. Look for those during the first and second weeks of December.
Nancy in Phila
Please get a 2nd opinion from a myeloma specialist. That way your local oncologist will have someone who he can coordinate your care with and ask questions about treatment. Most specialists are more than happy to consult with local oncologists. Splitting the dose of dex is quite common from what I have read on this forum and other sites, I don't get Velcade as part of my treatment.
I'm glad that your current oncologist is taking a proactive position about learning more about myeloma, but he will never be able to keep up with all of the changes that are occurring in the field and also keep up with the research and treatment recommendations for all of the other cancers that he treats.
Is he going to the American Society of Hematologists (ASH) conference next month in, I think, San Diego? This is an extremely important conference to go to. There will be a lot of platform and poster presentations about myeloma research. This conference occurs every December in a different city each year. The other important conference is in June, American Society of Clinical Oncologists (ASCO). There also are a lot of presentations on myeloma at that conference each year, too.
The forum has daily updates on what is going on at each of the conferences as they happen and a synopsis of the research that is presented. They usually post the abstracts of the myeloma research that is going to be presented during the conferences. Look for those during the first and second weeks of December.
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: Dexamethasone can be given over two days
My husband does split his dex dose. 20 mg on the first day of his Kyprolis infusion, and 20 mg the next day. His Mayo doc is fine with this.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Dexamethasone can be given over two days
Hi Castaway,
While it is great that your oncologist is trying to learn more about multiple myeloma, I strongly endorse Nancy's recommendation about getting a second opinion from a myeloma specialist. It is such a complex disease and advances are coming so rapidly that you really need someone who sees lots of multiple myeloma patients and lives and breathes this stuff every day.
One other thing – on Velcade, if you do end up receiving Velcade – ask to get it by subcutaneous (sub-q) injection rather than by infusion. Recent studies have shown that sub-q injection reduces the risk/severity of peripheral neuropathy as a side effect.
Best wishes to you, and keep us posted on how things go.
Mike
While it is great that your oncologist is trying to learn more about multiple myeloma, I strongly endorse Nancy's recommendation about getting a second opinion from a myeloma specialist. It is such a complex disease and advances are coming so rapidly that you really need someone who sees lots of multiple myeloma patients and lives and breathes this stuff every day.
One other thing – on Velcade, if you do end up receiving Velcade – ask to get it by subcutaneous (sub-q) injection rather than by infusion. Recent studies have shown that sub-q injection reduces the risk/severity of peripheral neuropathy as a side effect.
Best wishes to you, and keep us posted on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Dexamethasone can be given over two days
Hi castaway,
I am in Australia and I have only recently been diagnosed and am just beginning to see how little I know, a case of the more I learn the less I know
I have just finished my 2nd cycle of my IV cocktail and am having a week off, but that is how I take my dex. Over twice a week over 2 days, e.g., I have IV Velcade on Tuesday so 20 mg of dex on Tuesday and Wednesday then I do the cyclophosphamide on Fridays so again have 20 mg of dex on Friday and again Saturday.
I don't know any other way and only found this forum a few days ago, but my side effects, while I seem to have a lot of them, are just more annoying than debilitating, but I blame the dex and cannot wait to get off it.
Also very bloated!! Any ideas for that?!
Cheers sharon
I am in Australia and I have only recently been diagnosed and am just beginning to see how little I know, a case of the more I learn the less I know
I have just finished my 2nd cycle of my IV cocktail and am having a week off, but that is how I take my dex. Over twice a week over 2 days, e.g., I have IV Velcade on Tuesday so 20 mg of dex on Tuesday and Wednesday then I do the cyclophosphamide on Fridays so again have 20 mg of dex on Friday and again Saturday.
I don't know any other way and only found this forum a few days ago, but my side effects, while I seem to have a lot of them, are just more annoying than debilitating, but I blame the dex and cannot wait to get off it.
Also very bloated!! Any ideas for that?!
Cheers sharon
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: Dexamethasone can be given over two days
Castaway,
While finding a top myeloma specialist is always desirable, they are not always accessible to everyone, especially to those in small communities like yourself. I think it is great that your local oncologist is proactively educating himself more about the disease and keeping current on the latest developments in myeloma treatment. Not everyone would do this, he sounds like a keeper. There is also a lot to be said for having a local oncologist treating you who can be more responsive to immediate situations than a specialist many miles away. Having both would be ideal though.
I am also interested in any new developments or options for taking dexamethasone that maintain its effectiveness and reduces the stress of taking a high dose and then going through cortisol withdrawal a few days later. This is something I am having difficulty with now.
Keep us up to date on what you learn.
Best wishes to you,
Eric
While finding a top myeloma specialist is always desirable, they are not always accessible to everyone, especially to those in small communities like yourself. I think it is great that your local oncologist is proactively educating himself more about the disease and keeping current on the latest developments in myeloma treatment. Not everyone would do this, he sounds like a keeper. There is also a lot to be said for having a local oncologist treating you who can be more responsive to immediate situations than a specialist many miles away. Having both would be ideal though.
I am also interested in any new developments or options for taking dexamethasone that maintain its effectiveness and reduces the stress of taking a high dose and then going through cortisol withdrawal a few days later. This is something I am having difficulty with now.
Keep us up to date on what you learn.
Best wishes to you,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Dexamethasone can be given over two days
Eric,
Regarding other ways to "do" dex, see FAQ8 in this link:
http://www.berensononcology.com/introduction-to-myeloma/
Regarding other ways to "do" dex, see FAQ8 in this link:
http://www.berensononcology.com/introduction-to-myeloma/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dexamethasone can be given over two days
Multibilly,
The discussion in that link is interesting. I found dex to be difficult to tolerate at either 40 mg or 20 mg once a week. For the past several months, I have been taking 25 mg of prednisone every other day with no noticeable side effects.
In his discussion, Dr. Berenson does not mention the dosages that he prescribes for those who are taking steroids in pill form. I wonder if you or any of his patients can let us know the dosages that he favors.
The discussion in that link is interesting. I found dex to be difficult to tolerate at either 40 mg or 20 mg once a week. For the past several months, I have been taking 25 mg of prednisone every other day with no noticeable side effects.
In his discussion, Dr. Berenson does not mention the dosages that he prescribes for those who are taking steroids in pill form. I wonder if you or any of his patients can let us know the dosages that he favors.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Dexamethasone can be given over two days
I can't speak personally speak to doses since I've never been treated. In general, you often hear him say that he believes that many are "over-treated".
I know that one patient I had communicated with had been using:
12 mg dex IV given on day 1 4 8 11, including Velcade and Doxil. Then transitioned to 24 mg dex IV once every other week with no Doxil.
As I recall, that person still got wired and was having difficulty with sleep after treatment. How different that person's reaction was versus taking oral dex is really impossible for the person to say.
But remember that he really does tend to tailor drugs and doses to the individual, so please don't take any of this as guidance to how he would prescribe a steroid in other situations.
I know that one patient I had communicated with had been using:
12 mg dex IV given on day 1 4 8 11, including Velcade and Doxil. Then transitioned to 24 mg dex IV once every other week with no Doxil.
As I recall, that person still got wired and was having difficulty with sleep after treatment. How different that person's reaction was versus taking oral dex is really impossible for the person to say.
But remember that he really does tend to tailor drugs and doses to the individual, so please don't take any of this as guidance to how he would prescribe a steroid in other situations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dexamethasone can be given over two days
Thanks for the link Multibilly,
I have to say that Dr. Berenon stays on top of the latest developments in myeloma. I do not believe I will have much success getting my dexamethasone through IV and getting going to the infusion center for me now takes a bit of time out of a work day. Three years ago back when I was had to go to the infusion center weekly to get Velcade this would have been a great option, and I probably could have had it done through IV at that time if I had asked.
My oncologist has never brought up prednisone, I will at my next visit. I do not know much about prednisone and if it is as effective at dexamethasone, but people are using. It seems dexamethasone is a lot more widely used, maybe this is because there is more trial history and a proven successful track record with it.
My oncologist agreed it would be ok to lower my dose of dexamethasone to 20 mg once a week from 40 mg once a week since my kappa light chain is now in the of the normal range, 7mg/l. Three months of 25 mg Revlimid and 40 mg dexamethasone has worked really well.
I have read that it has been found that steroid dosages have been far higher than they needed to be and they are finding they can lower dosage and still get as good or even better results with lower doses. It used to be that the schedule was for 40 mg 4 days a week. I cannot image how hard that must have been. It seems the norm now has been 40 mg one day a week and for disease maintenance when it is under control 20 mg is increasingly being used.
I believe, like Dr. Berenson, that finding a tolerable dose you can stay on for the long term is key, so more than is necessary that forces you to stop because of side effects needs to be avoided. More than is necessary is a bad thing not a being conservative thing.
Will 20 mg make a difference for me? I do not know. Others have had success with it. My concern is that, after three months, I am experiencing more severe side effects from what I believe to be cortisol withdrawal starting about 3 to 4 days after I take my dexamethasone, that do not go away till I take my next dose.
It is my understanding that in time dexamethasone at high doses will cause the adrenal gland to stop producing any cortisol naturally, and I think this is what has happened in my case. This is what happened to me 3 years ago on 40 mg. I saw and endocrinologist and that was their finding. They gave me a test to stimulate my adrenal gland to make cortisol and got a result, but until I stopped the dexamethasone it would not start producing again on its own.
The side effects now of what I believe to be withdrawal symptoms stay till I take my next dose again. That was not the case when I first started three months ago. I feel my best the day I take my dexamethasone. Will 20 mg result in my adrenal gland making cortisol again? I do not know, time will tell.
Eventually I may need to see the endocrinologist again to determine just what is going on. I do not know if anything can be done about it, though, other than reducing the dose again or stopping, but I and my oncologist have to consider the risk vs benefit of that. Then again, maybe the endocrinologist will find it is something else entirely that is going on. I am not a doctor and I could be entirely wrong.
I have to say that Dr. Berenon stays on top of the latest developments in myeloma. I do not believe I will have much success getting my dexamethasone through IV and getting going to the infusion center for me now takes a bit of time out of a work day. Three years ago back when I was had to go to the infusion center weekly to get Velcade this would have been a great option, and I probably could have had it done through IV at that time if I had asked.
My oncologist has never brought up prednisone, I will at my next visit. I do not know much about prednisone and if it is as effective at dexamethasone, but people are using. It seems dexamethasone is a lot more widely used, maybe this is because there is more trial history and a proven successful track record with it.
My oncologist agreed it would be ok to lower my dose of dexamethasone to 20 mg once a week from 40 mg once a week since my kappa light chain is now in the of the normal range, 7mg/l. Three months of 25 mg Revlimid and 40 mg dexamethasone has worked really well.
I have read that it has been found that steroid dosages have been far higher than they needed to be and they are finding they can lower dosage and still get as good or even better results with lower doses. It used to be that the schedule was for 40 mg 4 days a week. I cannot image how hard that must have been. It seems the norm now has been 40 mg one day a week and for disease maintenance when it is under control 20 mg is increasingly being used.
I believe, like Dr. Berenson, that finding a tolerable dose you can stay on for the long term is key, so more than is necessary that forces you to stop because of side effects needs to be avoided. More than is necessary is a bad thing not a being conservative thing.
Will 20 mg make a difference for me? I do not know. Others have had success with it. My concern is that, after three months, I am experiencing more severe side effects from what I believe to be cortisol withdrawal starting about 3 to 4 days after I take my dexamethasone, that do not go away till I take my next dose.
It is my understanding that in time dexamethasone at high doses will cause the adrenal gland to stop producing any cortisol naturally, and I think this is what has happened in my case. This is what happened to me 3 years ago on 40 mg. I saw and endocrinologist and that was their finding. They gave me a test to stimulate my adrenal gland to make cortisol and got a result, but until I stopped the dexamethasone it would not start producing again on its own.
The side effects now of what I believe to be withdrawal symptoms stay till I take my next dose again. That was not the case when I first started three months ago. I feel my best the day I take my dexamethasone. Will 20 mg result in my adrenal gland making cortisol again? I do not know, time will tell.
Eventually I may need to see the endocrinologist again to determine just what is going on. I do not know if anything can be done about it, though, other than reducing the dose again or stopping, but I and my oncologist have to consider the risk vs benefit of that. Then again, maybe the endocrinologist will find it is something else entirely that is going on. I am not a doctor and I could be entirely wrong.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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