After a SCBMT, and complete remission, is it always onto a maintenance of some form of chemo for life? Or wait to see if it creeps up again?
Chris
Forums
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Always maintanence?
Chris
I am on maint chemo Revlimid. Seriously thinking about stoping it
I am on maint chemo Revlimid. Seriously thinking about stoping it
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: Always maintanence?
No matter how good it is, it's all poison. I would like to do the SCBMT and not be on any chemo after. Just wondering how many are and how many are not. Is there something that regulates whom should be and whom can get away with not?
-Chris
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Always maintanence?
Chris-
You are actually the one who had the final decision as to whether to be on maintenance or not. I had an ASCT 2 years ago. My oncoloigst started me on maintenance at day 100 after the transplant. I wasn't convinced that this was the right path to take. I think that my body decided to make the decision for me. It responded badly to Rev within 5 days of starting it again. My oncologist told me to stop taking it. At the time he said that when I needed treatment again that there would be plenty of options to try. Just yesterday he said that he was beginning to be more of a believer of not doing maintenance.
Yes, I have had some bumps in the road along the way, but being drug free, other than Zometa, has been wonderful.
Nancy
You are actually the one who had the final decision as to whether to be on maintenance or not. I had an ASCT 2 years ago. My oncoloigst started me on maintenance at day 100 after the transplant. I wasn't convinced that this was the right path to take. I think that my body decided to make the decision for me. It responded badly to Rev within 5 days of starting it again. My oncologist told me to stop taking it. At the time he said that when I needed treatment again that there would be plenty of options to try. Just yesterday he said that he was beginning to be more of a believer of not doing maintenance.
Yes, I have had some bumps in the road along the way, but being drug free, other than Zometa, has been wonderful.
Nancy
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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: Always maintanence?
NSTEWART wrote:
> Chris-
> You are actually the one who had the final decision as to whether to be on
> maintenance or not. I had an ASCT 2 years ago. My oncoloigst started me on
> maintenance at day 100 after the transplant. I wasn't convinced that this
> was the right path to take. I think that my body decided to make the
> decision for me. It responded badly to Rev within 5 days of starting it
> again. My oncologist told me to stop taking it. At the time he said that
> when I needed treatment again that there would be plenty of options to try.
> Just yesterday he said that he was beginning to be more of a believer of
> not doing maintenance.
> Yes, I have had some bumps in the road along the way, but being drug free,
> other than Zometa, has been wonderful.
> Nancy
So you are 2 years after SCT and still drug free? After SCT were you CR? Are you numbers still the same now as they were 100 days after SCT? How bad were you at DX and then after induction before SCT?
Thanks
Chris
> Chris-
> You are actually the one who had the final decision as to whether to be on
> maintenance or not. I had an ASCT 2 years ago. My oncoloigst started me on
> maintenance at day 100 after the transplant. I wasn't convinced that this
> was the right path to take. I think that my body decided to make the
> decision for me. It responded badly to Rev within 5 days of starting it
> again. My oncologist told me to stop taking it. At the time he said that
> when I needed treatment again that there would be plenty of options to try.
> Just yesterday he said that he was beginning to be more of a believer of
> not doing maintenance.
> Yes, I have had some bumps in the road along the way, but being drug free,
> other than Zometa, has been wonderful.
> Nancy
So you are 2 years after SCT and still drug free? After SCT were you CR? Are you numbers still the same now as they were 100 days after SCT? How bad were you at DX and then after induction before SCT?
Thanks
Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Always maintanence?
This question is top of my big C list!
I started Rev maintenance, 15mg 21/7, Jan. 3 after a Sept. ASCT. Both my wife and I are concerned about a lifetime of powerful drugs. I've read quite a bit about Rev and how it works. I can see good reasons to take the stuff post transplant for a period of time after transplant. I also seem to be tolerating it well. It does a lot to disrupt the processes that sustain multiple myeloma.
The evidence is clear to me that Rev has a place in maintenance. I am convinced it can delay the onset of relapse. If it extends relapse for an appreciable time for me it has to be less toxic than a return to active chemo. I hate Dex the most! It turns me into a predatory ape! There are so many questions left to be answered. Would six months of Rev be as effective as long term use, would a short term high dose early and a very low dose later in maintenance be as workable, etc... The question of secondary cancers is important. Calgene says the numbers aren't statiscally relevant but I bet they would sing a different tune if a similar reduction in secondary cancers was found!
My simple math sees a small but real chance for secondary cancer. Maybe 2-3%, very good odds if onset of relapse is extended for many months.
In the end we must weigh the risks with the quality of life. I am discussing a protocal with my Doc of Rev therapy for a period of time and then going drug free if there is no return of multiple myeloma. Dr. Bahlis of the Tom Baker Center in Calgary is a multiple myeloma specialist and highly respected and thinks extended maintenance is in order. I trust my life to his judgement and he has earned my unending respect and gratitude. This won't be an easy decision
I started Rev maintenance, 15mg 21/7, Jan. 3 after a Sept. ASCT. Both my wife and I are concerned about a lifetime of powerful drugs. I've read quite a bit about Rev and how it works. I can see good reasons to take the stuff post transplant for a period of time after transplant. I also seem to be tolerating it well. It does a lot to disrupt the processes that sustain multiple myeloma.
The evidence is clear to me that Rev has a place in maintenance. I am convinced it can delay the onset of relapse. If it extends relapse for an appreciable time for me it has to be less toxic than a return to active chemo. I hate Dex the most! It turns me into a predatory ape! There are so many questions left to be answered. Would six months of Rev be as effective as long term use, would a short term high dose early and a very low dose later in maintenance be as workable, etc... The question of secondary cancers is important. Calgene says the numbers aren't statiscally relevant but I bet they would sing a different tune if a similar reduction in secondary cancers was found!
My simple math sees a small but real chance for secondary cancer. Maybe 2-3%, very good odds if onset of relapse is extended for many months.
In the end we must weigh the risks with the quality of life. I am discussing a protocal with my Doc of Rev therapy for a period of time and then going drug free if there is no return of multiple myeloma. Dr. Bahlis of the Tom Baker Center in Calgary is a multiple myeloma specialist and highly respected and thinks extended maintenance is in order. I trust my life to his judgement and he has earned my unending respect and gratitude. This won't be an easy decision
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Always maintanence?
Chris I have to wait till my partner gets back in several hours time to ask him some more detailed questions. For now I know that after the sct they had him on bisphosphonates to strengthen his bones (until he got osteonecrosis anyway) but I think they took him off all the other drugs completely.. He had not taken any medication for 10 years before having to start again recently but his m spike never went down to zero. I have to check his initial level post SCT as my spreadsheet only goes back to 2006 but in 2006 his m-spike was 8.1. It was only going up and down by about 0.1 - 0.2 each couple of months so it wasn't anything to worry about. He said he didn't have to go back on medication until it was over 10. Luckily he didn't have any complications with any organs or anything else so as long as the results stayed stable in all areas, all they did was monitor.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: Always maintanence?
laetetia wrote:
> Chris I have to wait till my partner gets back in several hours time to ask
> him some more detailed questions. For now I know that after the sct they
> had him on bisphosphonates to strengthen his bones (until he got
> osteonecrosis anyway) but I think they took him off all the other drugs
> completely.. He had not taken any medication for 10 years before having to
> start again recently but his m spike never went down to zero. I have to
> check his initial level post SCT as my spreadsheet only goes back to 2006
> but in 2006 his m-spike was 8.1. It was only going up and down by about 0.1
> - 0.2 each couple of months so it wasn't anything to worry about. He said
> he didn't have to go back on medication until it was over 10. Luckily he
> didn't have any complications with any organs or anything else so as long
> as the results stayed stable in all areas, all they did was monitor.
Sounds like your scale for M spike is a little different. Are you not in the US?
I was originally DXd at 8.9 and both my Oncologist here in SC and up in MD at Hopkins said it was the highest they had seen. I was also 80% marrow biopsy. Another reason I say your scale is different, is there is no way a Dr would say no drugs until it was over 10, at that point a person would be close to death.
As with all here, I love getting info from all involved. Everyone's story is so intriguing and different. Please let us know what info you find when your partner gets home.
Thanks!
Chris
> Chris I have to wait till my partner gets back in several hours time to ask
> him some more detailed questions. For now I know that after the sct they
> had him on bisphosphonates to strengthen his bones (until he got
> osteonecrosis anyway) but I think they took him off all the other drugs
> completely.. He had not taken any medication for 10 years before having to
> start again recently but his m spike never went down to zero. I have to
> check his initial level post SCT as my spreadsheet only goes back to 2006
> but in 2006 his m-spike was 8.1. It was only going up and down by about 0.1
> - 0.2 each couple of months so it wasn't anything to worry about. He said
> he didn't have to go back on medication until it was over 10. Luckily he
> didn't have any complications with any organs or anything else so as long
> as the results stayed stable in all areas, all they did was monitor.
Sounds like your scale for M spike is a little different. Are you not in the US?
I was originally DXd at 8.9 and both my Oncologist here in SC and up in MD at Hopkins said it was the highest they had seen. I was also 80% marrow biopsy. Another reason I say your scale is different, is there is no way a Dr would say no drugs until it was over 10, at that point a person would be close to death.
As with all here, I love getting info from all involved. Everyone's story is so intriguing and different. Please let us know what info you find when your partner gets home.
Thanks!
Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Always maintanence?
Chris-
My m-spike was in the 2's when I was diagnosed with smoldering myeloma. It was in the 3's when I started treatment because of a pathologic fracture of one of my arms. My m-spike went down to 0.6 with induction therapy. It was still 0.6 after the ASCT and didn't decrease to 0 until about 7 months after the transplant. It stayed at 0 until last May - 10 months at 0 - when it rose to 0.6. It has stayed there since last May. I still get Zometa every 6 weeks because of all of the bone lesions that I have. But, the lesions have been stable for the last 2 years, too. All of my other bloodwork is within the normal range and has been that way since 7 months after the transplant.
My oncologist has set 1.0 has a benchmark for restarting treatment. We have discussed what treatment I will start with when needed and have decided to go back on Revlimid. I told him that I wanted to stay with the treatment that was the least disruptive to my life. If I need to go on Velcade, or one of the other drugs that you need to go to the hospital to receive, then I will do so. But, if I can take a daily pill I would prefer to do that.
Nancy
My m-spike was in the 2's when I was diagnosed with smoldering myeloma. It was in the 3's when I started treatment because of a pathologic fracture of one of my arms. My m-spike went down to 0.6 with induction therapy. It was still 0.6 after the ASCT and didn't decrease to 0 until about 7 months after the transplant. It stayed at 0 until last May - 10 months at 0 - when it rose to 0.6. It has stayed there since last May. I still get Zometa every 6 weeks because of all of the bone lesions that I have. But, the lesions have been stable for the last 2 years, too. All of my other bloodwork is within the normal range and has been that way since 7 months after the transplant.
My oncologist has set 1.0 has a benchmark for restarting treatment. We have discussed what treatment I will start with when needed and have decided to go back on Revlimid. I told him that I wanted to stay with the treatment that was the least disruptive to my life. If I need to go on Velcade, or one of the other drugs that you need to go to the hospital to receive, then I will do so. But, if I can take a daily pill I would prefer to do that.
Nancy
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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: Always maintanence?
Confirmed with my partner. His M Spike went down to 4 after his SCT. He was not put on any maintenance drugs at all. Only the biphosphonates for his bones which he later stopped. The SCT was 2001. He didn't take any medication again until late 2011.
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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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