I had my ASCT Sept 22nd last, and apart from the usual nausea and such, it went very well indeed. At this point all I am left with is an ongoing itch ( for which I just bought $200 - my share - of meds) which is apparently another neuropathic response.
I've had two doses of Zometa since the transplant. My oncologist thinks I should not take anymore, and is booking a full skeletal survey to make sure.
My onc doesn't seem to think any consolidation / post-ASCT therapy (eg: Revlimid) is in the cards, yet almost everything I read here seems to indicate that this is the new norm going forward.
What has been the actual experience with you folks, and/or what do you think? Obviously, I'd prefer to not take the stuff, but...
BTW: My final numbers are 6g/L paraprotein (Immunofixation serum band 1 - A) in my blood (which was 7 the week following transplant), no detectable protein in my urine, and 3% plasma cells in my bone marrow, with some small clusters.
My onc describes my response to induction / transplant as 2.5 - 3 out of 4 as of the last set of tests (about 4 months out), and characterizes me as currently in remission and "pseudo-smoldering".
Forums
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Addendum: I am characterized as genetically low-risk, rather than high, if that makes a difference.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Nobody has an opinion or knows anything about this? Really?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Hi Snip!
I am not really sure what you are asking.
If it is whether to have therapy post ASCT, that is highly personal and a joint decision you will make with your M.D. As you know, multiple myeloma physicians opinions can vary on this based on your personal lab results and cytogenetic profile.
Based on the clinical trials, low risk cytogenetic profiles seem to have the luck of the draw. IOW's they typically have longer PFS whether they have therapy post ASCT or not. The concern at present seems to be whether maintenance therapy results in secondary malignancies.
This may be of interest to you:
"Lenalidomide (Revlimid) dramatically reduced the rate of recurrence in patients with multiple myeloma (multiple myeloma) following first-line autologous stem cell transplant (ASCT), according to interim results of a phase III study. The data were presented at the 2010 ASCO Annual Meeting by lead investigator Michel Attal, MD, of Purpan Hospital in Toulouse, France, speaking for the Intergroupe Francophone du Myélome.1"
http://www.ascopost.com/articles/july-2010/maintenance-therapy-with-lenalidomide-halves-recurrence-rate-in-multiple-myeloma/
http://www.ascopost.com/articles/december-2010/lenalidomide-based-induction-and-maintenance-therapies/
Don't know if I have focused on what your true question was but if you are more specific I will try & give it a better shot.
PS...I know this is irrelevant, but your avatar looks mean to me, so I kinda scroll pass it. Don't know if others are responding that way or not.
I am not really sure what you are asking.
If it is whether to have therapy post ASCT, that is highly personal and a joint decision you will make with your M.D. As you know, multiple myeloma physicians opinions can vary on this based on your personal lab results and cytogenetic profile.
Based on the clinical trials, low risk cytogenetic profiles seem to have the luck of the draw. IOW's they typically have longer PFS whether they have therapy post ASCT or not. The concern at present seems to be whether maintenance therapy results in secondary malignancies.
This may be of interest to you:
"Lenalidomide (Revlimid) dramatically reduced the rate of recurrence in patients with multiple myeloma (multiple myeloma) following first-line autologous stem cell transplant (ASCT), according to interim results of a phase III study. The data were presented at the 2010 ASCO Annual Meeting by lead investigator Michel Attal, MD, of Purpan Hospital in Toulouse, France, speaking for the Intergroupe Francophone du Myélome.1"
http://www.ascopost.com/articles/july-2010/maintenance-therapy-with-lenalidomide-halves-recurrence-rate-in-multiple-myeloma/
http://www.ascopost.com/articles/december-2010/lenalidomide-based-induction-and-maintenance-therapies/
Don't know if I have focused on what your true question was but if you are more specific I will try & give it a better shot.
PS...I know this is irrelevant, but your avatar looks mean to me, so I kinda scroll pass it. Don't know if others are responding that way or not.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
suzierose wrote:
> http://www.ascopost.com/articles/july-2010/maintenance-therapy-with-lenalidomide-halves-recurrence-rate-in-multiple-myeloma/
>
>
> http://www.ascopost.com/articles/december-2010/lenalidomide-based-induction-and-maintenance-therapies/
> PS...I know this is irrelevant, but your avatar looks mean to me, so I
> kinda scroll pass it. Don't know if others are responding that way or not.
Thanks for those links... compelling, aren't they!? A big difference in mid-to-long-term prognosis, for sure... and even covered in my jurisdiction (Ontario, Canada)
Per avatar: thanks for that. I hadn't thought of it that way, but looking at it with that comment in mind, I can certainly see the possibility. Not a true representation any more anyhow... my hair is mostly silver now. Perhaps time to revisit
> http://www.ascopost.com/articles/july-2010/maintenance-therapy-with-lenalidomide-halves-recurrence-rate-in-multiple-myeloma/
>
>
> http://www.ascopost.com/articles/december-2010/lenalidomide-based-induction-and-maintenance-therapies/
> PS...I know this is irrelevant, but your avatar looks mean to me, so I
> kinda scroll pass it. Don't know if others are responding that way or not.
Thanks for those links... compelling, aren't they!? A big difference in mid-to-long-term prognosis, for sure... and even covered in my jurisdiction (Ontario, Canada)
Per avatar: thanks for that. I hadn't thought of it that way, but looking at it with that comment in mind, I can certainly see the possibility. Not a true representation any more anyhow... my hair is mostly silver now. Perhaps time to revisit
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Oh, and suzierose: my point in asking was an attempt to ascertain just what causes one patient to get consolidation therapy and another not... what are the benchmarks doctors and patients use in making that decision?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Snip,
You know what they say...knowledge is power. That I think is the difference between the therapy that patients get. A patient with knowledge has far more influence and "power" over their therapy.
Clearly those trials are more than compelling..and if I were in your shoes...I certaintly would use them to support requesting maintenance, if you choose to go that route, if your multiple myeloma physician is not suggesting that course of therapy. Also there should be even more data now, as that update is from 2010.
One thing though is that a conservative physician would want to see an improvement in OS perhaps in order to feel the benefits outweigh the risks of secondary malignancies. The jury is still out in terms of chronic/long term use of lenalidomide.
OTOH, many clinicians feel that you have far greater odds to die from the multiple myeloma than you have from the secondary malignancy. Just gotta love sittin at the high roller table with this disease!!
Which brings us full circle, to patient power and maintenance therapy being a very individual decision and highly variable based on the expertise and philosophy of the treating physician.
You know what they say...knowledge is power. That I think is the difference between the therapy that patients get. A patient with knowledge has far more influence and "power" over their therapy.
Clearly those trials are more than compelling..and if I were in your shoes...I certaintly would use them to support requesting maintenance, if you choose to go that route, if your multiple myeloma physician is not suggesting that course of therapy. Also there should be even more data now, as that update is from 2010.
One thing though is that a conservative physician would want to see an improvement in OS perhaps in order to feel the benefits outweigh the risks of secondary malignancies. The jury is still out in terms of chronic/long term use of lenalidomide.
OTOH, many clinicians feel that you have far greater odds to die from the multiple myeloma than you have from the secondary malignancy. Just gotta love sittin at the high roller table with this disease!!
Which brings us full circle, to patient power and maintenance therapy being a very individual decision and highly variable based on the expertise and philosophy of the treating physician.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Post-ASCT treatments... yes or no?
Snip,
Just an opinion that is not shared by many. Most Doctors/Patients view a 2-3 drug combination as Induction and it is used to get the Myeloma to a low level (at least VGPR) - some choose to do an Auto and some do not. Those that do an Auto view it as Consolidation. They may get to a CR or sCR. They typically use a lower dose of some combination of Revlimid/Velcade/Dex as Maintenance. IMO they are maintaining a poorly defined endpoint (CR or sCR). As a younger patient I would at least look to treat up to an IR (Immunophenotypic Response) or ideally a MR (Molecular Response). I think the reason that depth of response has not shown an improvement in Myeloma is that CR and sCR are an inadequete endpoint. The other reason is that no good Immunotherapy outside of Allogeneic transplantation is available to Myeloma patients.
Here is a Paper from 2010 ASH that describes IR.
http://ash.confex.com/ash/2010/webprogram/Paper32022.html
I would be inclined to try and treat to a higher level of response than CR or sCR and than not use Maintenance as opposed to what most Doctors in multiple myeloma do (only measure to sCR and than try to maintain that tumor burden). The Beacon described Dr. Kroger discussing this type of approach and the importance of MR at 2011 ASH. It is the fourth story down from the top of the page.
https://myelomabeacon.org/forum/ash-2011-multiple-myeloma-discussion-day-2-t759.html
I did a myeloablative Allo to consolidate my first CR. I think that shows just how little importance I think achieving the current definition of CR is to a younger patient. Just because the majority of Doctors try to maintain a CR or sCR and do not bother testing for IR or MR does not mean it is the optimal way to treat.
Mark
Just an opinion that is not shared by many. Most Doctors/Patients view a 2-3 drug combination as Induction and it is used to get the Myeloma to a low level (at least VGPR) - some choose to do an Auto and some do not. Those that do an Auto view it as Consolidation. They may get to a CR or sCR. They typically use a lower dose of some combination of Revlimid/Velcade/Dex as Maintenance. IMO they are maintaining a poorly defined endpoint (CR or sCR). As a younger patient I would at least look to treat up to an IR (Immunophenotypic Response) or ideally a MR (Molecular Response). I think the reason that depth of response has not shown an improvement in Myeloma is that CR and sCR are an inadequete endpoint. The other reason is that no good Immunotherapy outside of Allogeneic transplantation is available to Myeloma patients.
Here is a Paper from 2010 ASH that describes IR.
http://ash.confex.com/ash/2010/webprogram/Paper32022.html
I would be inclined to try and treat to a higher level of response than CR or sCR and than not use Maintenance as opposed to what most Doctors in multiple myeloma do (only measure to sCR and than try to maintain that tumor burden). The Beacon described Dr. Kroger discussing this type of approach and the importance of MR at 2011 ASH. It is the fourth story down from the top of the page.
https://myelomabeacon.org/forum/ash-2011-multiple-myeloma-discussion-day-2-t759.html
I did a myeloablative Allo to consolidate my first CR. I think that shows just how little importance I think achieving the current definition of CR is to a younger patient. Just because the majority of Doctors try to maintain a CR or sCR and do not bother testing for IR or MR does not mean it is the optimal way to treat.
Mark
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Mark
Re: Post-ASCT treatments... yes or no?
Mark wrote:
> Snip,
>
> Just an opinion that is not shared by many.
Oh my goodness... taking me to places I had no idea existed. I see I have more studying to do.
Thanks, Mark!
> Snip,
>
> Just an opinion that is not shared by many.
Oh my goodness... taking me to places I had no idea existed. I see I have more studying to do.
Thanks, Mark!
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Post-ASCT treatments... yes or no?
Hi Interesting reading about your treatment since I am in Ontario also. My treatment is different though! could be that I was diagnosed earlier? Or maybe just a different hospital. I am 2years post diagnosis . I was offered maintenence with Thalidomide after stem cell, which I declined, sine I already had moderate painful neuropathy and lack of feeling in my lower legs and feet, and also low blood pressure.
I have been on Pamidronate since my diagnosis, but I had lytic lesions at diagnosis, and these were later noted on a CT scan of my lungs as incidental findings. I am just about done my two years of Pami, and was not offered Zometa.
If you have no evidence of bone disease I would not take this drug. I'm still worried about long term dental issues (since I'm youngish, and have family history of bad teeth). But in my case the bone involvement was evident and I had back pain also.
I have been on Pamidronate since my diagnosis, but I had lytic lesions at diagnosis, and these were later noted on a CT scan of my lungs as incidental findings. I am just about done my two years of Pami, and was not offered Zometa.
If you have no evidence of bone disease I would not take this drug. I'm still worried about long term dental issues (since I'm youngish, and have family history of bad teeth). But in my case the bone involvement was evident and I had back pain also.
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Alysssa
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