I was wondering if anyone has gone through initial chemo, stem cell transplant (SCT), maintenance with Revlimid and dex and did not get a remission from this.
Had a decent bone marrow biopsy recently, but had a PET scan due to pain and have 4 or more plasmacytomas throughout skeleton. What does this mean?
Would really appreciated any feedback. Thank you.
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Re: No remission after induction, SCT, and maintenance
What kind of remission (response)?
See: https://myelomabeacon.org/forum/remission-what-does-it-mean-t1554.html
As far as understanding the impact of the kind of remission one achieves post SCT, see:
"Importance of Achieving Stringent Complete Response After Autologous Stem-Cell Transplantation in Multiple Myeloma"
http://jco.ascopubs.org/content/early/2013/11/18/JCO.2013.49.0086.abstract
The above article is also discussed in this Beacon news article:
"Degree Of Complete Response After Transplant May Affect Survival In Myeloma"
https://myelomabeacon.org/news/2014/02/26/complete-response-transplant-survival-multiple-myeloma/
See: https://myelomabeacon.org/forum/remission-what-does-it-mean-t1554.html
As far as understanding the impact of the kind of remission one achieves post SCT, see:
"Importance of Achieving Stringent Complete Response After Autologous Stem-Cell Transplantation in Multiple Myeloma"
http://jco.ascopubs.org/content/early/2013/11/18/JCO.2013.49.0086.abstract
The above article is also discussed in this Beacon news article:
"Degree Of Complete Response After Transplant May Affect Survival In Myeloma"
https://myelomabeacon.org/news/2014/02/26/complete-response-transplant-survival-multiple-myeloma/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No remission after induction, SCT, and maintenance
My boyfriend did all that. Has tumours on chest, back, and sides. Waiting for CT scan to see if tumors have persisted. Starting Pomalyst (pomalidomide), Velcade, and dex. He is day 88 after stem cell transplant.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: No remission after induction, SCT, and maintenance
Sorry Terrilynn, did they tell you any reasons why the tumors are coming back out?
Re: No remission after induction, SCT, and maintenance
His is very resistant. He was on Velcade 2 times a week and Revlimid and dex daily for 3 months prior. No breaks. As soon as they stop treatment, it gets away. They were hoping to get to 100 days post transplant, but no one is surprised he didn't.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: No remission after induction, SCT, and maintenance
Dear cgrundy,
Knowing the status of your disease at baseline and over the course of therapy would allow us to better determine your current remission status. We need to compare the current situation to where you were at the beginning and over the course of treatment.
Did you have a PET-CT at baseline? If so, were these 4 plasmacytomas there then?
If you have not had a previous PET-CT for comparison and your other myeloma parameters have improved over time, it is possible that the current plasmacytomas were bigger at baseline and have shrunk with therapy, and/or that there were more than 4 lesions at baseline?
Also, knowing if the plasmacytmas are "hot" or not is useful, and, if "hot," to what degree. If they are FDG negative (i.e. cold), they may be lesions that have been successfully treated. If they are hot, perhaps the degree of FDG uptake on PET has decreased over time (if a baseline is available for comparison).
Please let us know how things have played out over time, and perhaps we can provide better direction as to what your PET-CT means and what steps should be taken.
Thanks!
Pete V.
Knowing the status of your disease at baseline and over the course of therapy would allow us to better determine your current remission status. We need to compare the current situation to where you were at the beginning and over the course of treatment.
Did you have a PET-CT at baseline? If so, were these 4 plasmacytomas there then?
If you have not had a previous PET-CT for comparison and your other myeloma parameters have improved over time, it is possible that the current plasmacytomas were bigger at baseline and have shrunk with therapy, and/or that there were more than 4 lesions at baseline?
Also, knowing if the plasmacytmas are "hot" or not is useful, and, if "hot," to what degree. If they are FDG negative (i.e. cold), they may be lesions that have been successfully treated. If they are hot, perhaps the degree of FDG uptake on PET has decreased over time (if a baseline is available for comparison).
Please let us know how things have played out over time, and perhaps we can provide better direction as to what your PET-CT means and what steps should be taken.
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: No remission after induction, SCT, and maintenance
Try eating radical low carb and see if that puts you in remission.
I was diagnosed with multiple myeloma and light chain deposition disease on Memorial Day 2012, from then until BMT in November 2012 I had dex, Velcade shots, thalidomide & then Revlimid. I had BMT Nov 2012 and in 2013 my numbers were fairly good but slowly creeping back up.
Creatinine was as high as 3.1 in 2012 and as high as 2.4 in 2013 - my last appointment after 1 month of eating radical low carb my creatinine was 1.463557.
My Kappa free light chains were 94 in 2012, 6.29 in 2013 (after BMT in 11/12) they were down to 2.54 at my last appointment May 5th.
My ratio was 1.6 in 2013 and it was down to 0.996 at my last appointment after 1 month of eating radical low carb.
I eat like Atkins induction phase and will probably need to do that for the rest of my life. The results on my cancer are stunning - I cant believe this isn't front page news.
Do an Internet search on cancer and low blood sugar.
I was diagnosed with multiple myeloma and light chain deposition disease on Memorial Day 2012, from then until BMT in November 2012 I had dex, Velcade shots, thalidomide & then Revlimid. I had BMT Nov 2012 and in 2013 my numbers were fairly good but slowly creeping back up.
Creatinine was as high as 3.1 in 2012 and as high as 2.4 in 2013 - my last appointment after 1 month of eating radical low carb my creatinine was 1.463557.
My Kappa free light chains were 94 in 2012, 6.29 in 2013 (after BMT in 11/12) they were down to 2.54 at my last appointment May 5th.
My ratio was 1.6 in 2013 and it was down to 0.996 at my last appointment after 1 month of eating radical low carb.
I eat like Atkins induction phase and will probably need to do that for the rest of my life. The results on my cancer are stunning - I cant believe this isn't front page news.
Do an Internet search on cancer and low blood sugar.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: No remission after induction, SCT, and maintenance
I thought I should clarify my suggestion of cutting carbs. My Kappa light chains are my primary cancer marker. Every month my oncologist sends my blood sample off to somewhere like Mayo Clinic. The way they found my cancer was because the light chains had destroyed 75% of my kidneys and they only diagnosed it after doing a kidney biopsy and sending that off to Mayo clinic.
I had a SCR in Nov 2012 -at that time I asked the transplant coordinator how long I would have before I needed another SCR (BMT) and she said the average remission was 2-5 years so I have not felt I could plan on any future. It has been 1 1/2 years and my kappa light chains have been creeping up. My sister sent me a link to a book that was supposed to help you have a "radical remission". It said "no sugar" etc. So, I asked my oncologist. He said the research shows that it is not just the sugar you EAT - it is the sugar level in your blood. You need to keep that low and steady - and he actually said "A low carb diet -like an Atkins diet or a diabetic diet is what you should follow. In fact metformin is being studied and may prevent cancer or prolong remission." So, I went home and started trying to eat less sugar and less carbs. After I got a book called, "Diabetes solution" by Dr Richard Bernstein" I started doing better about carbs. Then I remembered I was given a glucose monitor when I was at the hospital for the BMT. So, I started using that. My goal is to normalize my blood and hold it to a steady, lower level
I am not trying to convince anyone else to do what I do - I know how stressful it is to get the diagnosis of multiple myeloma and I probably could not have dealt with the idea of changing my diet until recently.
I had a SCR in Nov 2012 -at that time I asked the transplant coordinator how long I would have before I needed another SCR (BMT) and she said the average remission was 2-5 years so I have not felt I could plan on any future. It has been 1 1/2 years and my kappa light chains have been creeping up. My sister sent me a link to a book that was supposed to help you have a "radical remission". It said "no sugar" etc. So, I asked my oncologist. He said the research shows that it is not just the sugar you EAT - it is the sugar level in your blood. You need to keep that low and steady - and he actually said "A low carb diet -like an Atkins diet or a diabetic diet is what you should follow. In fact metformin is being studied and may prevent cancer or prolong remission." So, I went home and started trying to eat less sugar and less carbs. After I got a book called, "Diabetes solution" by Dr Richard Bernstein" I started doing better about carbs. Then I remembered I was given a glucose monitor when I was at the hospital for the BMT. So, I started using that. My goal is to normalize my blood and hold it to a steady, lower level
I am not trying to convince anyone else to do what I do - I know how stressful it is to get the diagnosis of multiple myeloma and I probably could not have dealt with the idea of changing my diet until recently.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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