My treatment was four years ago and lasted for 8 months - Velcade, dex and Revlimid. I continued on low dose Revlimid (10 mg) daily for an extra year until 2013 and enjoyed a good remission until September 2015, when I had a routine thyroidectomy followed by levothyroxine. The thyroid was benign but within three weeks of the operation my regular electrophoresis test showed a 0.3 g/dL monoclonal peak in the beta 2 region. All other blood test results were good.
I immediately told the hematologist at the hospital but he said it was too small to worry about at that point. Since then it has had a linear straight line monthly increase and has now reached 2 grams per decilitre, all other readings being normal, and I feel good with no pain and no CRAB problems.
The hematologist has left me without any treatment during this period and he even stopped my three-monthly Zometa treatment. My other healthcare providers are surprised to see me without treatment of any type and I do not want to become an 'overall survival statistic' having had a reasonably good 'progression-free survival' period of 24 months.
If anybody can put my mind at ease I would be grateful. My next consultation has been put back until June instead of May 2016. Kind Regards
Forums
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Is it okay that I'm not receiving treatment right now?
I was on Revlimid - dex for 4 treatments and was told it looked like it was gone. Then I was told by the transplant doctor he wanted me to have at least six rounds before he does the transplant.
Diagnosed September 2013 and bone marrow transplant September 2014.
I don't remember how many more rounds of reduced doses of Revlimid only after the bone marrow transplant.
Finally in January 2016 I was told I was in complete response (CR).
I have not had any treatment for cancer since January and was tested two weeks ago with all numbers coming back good. I do, however, still get Zometa every three months. This treatment coming up will be my first that I wasn't on the chemo also. I have gotten ill every treatment prior. I have decided if I get sick on the Zometa now, I'm going to stop those treatments too. I don't really feel any better since being told I was in remission.
It was a joint decision between my doc and me to stop the Revlimid, just as will be if I stop the Zometa. I have felt a little better. Unfortunately, I have had 3 kyphoplasty procedures since diagnosis, and have severe pain in my joints (arthritis). along with the never ending back stuff.
I'm being tested (blood work) every three months, and 24-hour urine every 6 months.
I feel comfortable knowing every 3 months it is being checked. I was getting sick every three weeks or so while doing the chemo. I have only been bedridden sick twice since stopping chemo.
I'm thinking that if you told your doctor you would prefer to do the maintenance chemo. My transplant doctor told me most doctors are going straight to giving the maintenance dose, which I was down to 5 mg, 14 days on and 14 days off.
I chose to have at least a few months of not being sick all the time from the treatment. I would go right back on it if it was necessary.
It has come down to quality over quantity for me. I would rather have as much feeling good time as I can. I know the Revlimid works and there are plenty of other treatment routes we could take. I just have decided I don't want to feel crappy all the time like I was before.
I hope this gives you at least a little bit of help. It is an individual decision on how we want to be treated. Fortunately, we do have the ability to be part of that decision. Who knows what input we will be able to have down the road, the way insurance is going now.
Joe
Diagnosed September 2013 and bone marrow transplant September 2014.
I don't remember how many more rounds of reduced doses of Revlimid only after the bone marrow transplant.
Finally in January 2016 I was told I was in complete response (CR).
I have not had any treatment for cancer since January and was tested two weeks ago with all numbers coming back good. I do, however, still get Zometa every three months. This treatment coming up will be my first that I wasn't on the chemo also. I have gotten ill every treatment prior. I have decided if I get sick on the Zometa now, I'm going to stop those treatments too. I don't really feel any better since being told I was in remission.
It was a joint decision between my doc and me to stop the Revlimid, just as will be if I stop the Zometa. I have felt a little better. Unfortunately, I have had 3 kyphoplasty procedures since diagnosis, and have severe pain in my joints (arthritis). along with the never ending back stuff.
I'm being tested (blood work) every three months, and 24-hour urine every 6 months.
I feel comfortable knowing every 3 months it is being checked. I was getting sick every three weeks or so while doing the chemo. I have only been bedridden sick twice since stopping chemo.
I'm thinking that if you told your doctor you would prefer to do the maintenance chemo. My transplant doctor told me most doctors are going straight to giving the maintenance dose, which I was down to 5 mg, 14 days on and 14 days off.
I chose to have at least a few months of not being sick all the time from the treatment. I would go right back on it if it was necessary.
It has come down to quality over quantity for me. I would rather have as much feeling good time as I can. I know the Revlimid works and there are plenty of other treatment routes we could take. I just have decided I don't want to feel crappy all the time like I was before.
I hope this gives you at least a little bit of help. It is an individual decision on how we want to be treated. Fortunately, we do have the ability to be part of that decision. Who knows what input we will be able to have down the road, the way insurance is going now.
Joe
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JoeS - Name: Joe
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 56
Re: Is it okay that I'm not receiving treatment right now?
Hello Victor:
I think Joe made some very good points, but I wanted to give you one or two more to consider.
The definition of relapse varies somewhat, as different doctors may be more or less conservative. One that is often used is the greater of 10% of your initial M-Spike, or 0.5 (in the case where your initial M-Spike is less than 5). You probably have passed that point, since I am guessing that initially, it probably was not 20 g/dL. It is very good that CRAB symptoms have not yet arisen, but if the M-Spike is rising, you probably want to start before they do kick in.
I understand that in some cases, there is a type of watch and wait approach if your doctor thinks you are in an "MGUS-like state". In the minimum, I would think more frequent checks would be warranted.
Also, you did not mention an autologous stem cell transplant (ASCT). You mentioned also that you had a good 24-month period of progression-free survival (PFS). I would say, however, that you probably should include the one-year maintenance period, and you have had 3 years without progression, based on induction only, and no ASCT. That is actually quite good, and hopefully, when you might need it, you could have a more active regimen (say potentially incorporating Kyprolis or one of the monoclonoal antibodies), and achieve a very long remission at that time, as well.
Good luck to you.
I think Joe made some very good points, but I wanted to give you one or two more to consider.
The definition of relapse varies somewhat, as different doctors may be more or less conservative. One that is often used is the greater of 10% of your initial M-Spike, or 0.5 (in the case where your initial M-Spike is less than 5). You probably have passed that point, since I am guessing that initially, it probably was not 20 g/dL. It is very good that CRAB symptoms have not yet arisen, but if the M-Spike is rising, you probably want to start before they do kick in.
I understand that in some cases, there is a type of watch and wait approach if your doctor thinks you are in an "MGUS-like state". In the minimum, I would think more frequent checks would be warranted.
Also, you did not mention an autologous stem cell transplant (ASCT). You mentioned also that you had a good 24-month period of progression-free survival (PFS). I would say, however, that you probably should include the one-year maintenance period, and you have had 3 years without progression, based on induction only, and no ASCT. That is actually quite good, and hopefully, when you might need it, you could have a more active regimen (say potentially incorporating Kyprolis or one of the monoclonoal antibodies), and achieve a very long remission at that time, as well.
Good luck to you.
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JPC - Name: JPC
Re: Is it okay that I'm not receiving treatment right now?
Hi Victor L.
EJ just went through the same thing. He had a stem cell transplant in June 2011 and his M-spike held steady until last spring when it started rising slowly. When it started creeping over 0.5 g/dL, the doctor had him get a PET/CT scan to see if there were any new lesions. There was one new one and increased activity in the existing lesions. That was when they decided to start treatment.
As I understand it, a rise in M-spike is only one of the criteria for restarting treatment. If you don't have any other CRAB symptoms, your doc may want to hold off on starting treatment.
But this is a good time to explore all of your treatment options! There are lots of new drugs available. EJ got a second opinion from the good docs at Dana-Farber and decided to start on Ninlaro-Revlimid-dex.
Hope that helps.
Lyn
EJ just went through the same thing. He had a stem cell transplant in June 2011 and his M-spike held steady until last spring when it started rising slowly. When it started creeping over 0.5 g/dL, the doctor had him get a PET/CT scan to see if there were any new lesions. There was one new one and increased activity in the existing lesions. That was when they decided to start treatment.
As I understand it, a rise in M-spike is only one of the criteria for restarting treatment. If you don't have any other CRAB symptoms, your doc may want to hold off on starting treatment.
But this is a good time to explore all of your treatment options! There are lots of new drugs available. EJ got a second opinion from the good docs at Dana-Farber and decided to start on Ninlaro-Revlimid-dex.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Is it okay that I'm not receiving treatment right now?
Hello to Joe, Lyn and JPC,
Thank you for responding to my question and for sharing your thoughts.
You are quite right JPC, if we include 12 months of low-dose maintenance, then the remission period is three years; I was very pleased with this. I also draw some comfort from the fact that the relapse is very leisurely, 7 months so far. I have a full blood test every month including an electrophoresis, the results are sent to Toulouse for detailed evaluation.
I did a stem cell harvest in May of 2012 but as I did not react very well to the high-dose chemo, I elected to stay with the Velcade/Revlimid/dex. Obviously we will be discussing all of the options later in the year.
I am happy that I still feel well and I will update you when I have any new information.
Kind regards, my friends
Thank you for responding to my question and for sharing your thoughts.
You are quite right JPC, if we include 12 months of low-dose maintenance, then the remission period is three years; I was very pleased with this. I also draw some comfort from the fact that the relapse is very leisurely, 7 months so far. I have a full blood test every month including an electrophoresis, the results are sent to Toulouse for detailed evaluation.
I did a stem cell harvest in May of 2012 but as I did not react very well to the high-dose chemo, I elected to stay with the Velcade/Revlimid/dex. Obviously we will be discussing all of the options later in the year.
I am happy that I still feel well and I will update you when I have any new information.
Kind regards, my friends
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Is it okay that I'm not receiving treatment right now?
Dear Victor,
I agree with Joe about quality of life.
I have just finished 12 cycles of Rev plus dex and once in three months Zometa. I have my stem cells harvested and frozen but I am not inclined to do a transplant. Life with chemo has been difficult as the cycle progressed and my myeloma parameters declined to VGPR at one lab and CR at another.
My hematologist acknowledges that my life style - diet, yoga and meditation - is helpful in my life.
I left meat, alcohol, white carbs and brought in lots more fruits and vegetables in my diet. Turmeric concoction, no sugar, no salt has become regular part of my diet.
I am reluctant to take chemo anymore until I see that I am moving straight line curve as you have described Victor to above 3 g/dL.
I am tired of the life I have spent in the first cycle and last three cycles of chemo.
I agree with Joe about quality of life.
I have just finished 12 cycles of Rev plus dex and once in three months Zometa. I have my stem cells harvested and frozen but I am not inclined to do a transplant. Life with chemo has been difficult as the cycle progressed and my myeloma parameters declined to VGPR at one lab and CR at another.
My hematologist acknowledges that my life style - diet, yoga and meditation - is helpful in my life.
I left meat, alcohol, white carbs and brought in lots more fruits and vegetables in my diet. Turmeric concoction, no sugar, no salt has become regular part of my diet.
I am reluctant to take chemo anymore until I see that I am moving straight line curve as you have described Victor to above 3 g/dL.
I am tired of the life I have spent in the first cycle and last three cycles of chemo.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is it okay that I'm not receiving treatment right now?
Good evening MMFeb16/15,
Thank you for your comments. I understand your sentiments and I think you are very wise to adopt this new diet and the yoga etc.
When I was on the same treatment back in 2012, my entire body felt alive in a bad way, as though there was a huge clock spring inside of me, tightly wound, making it impossible to sit down and relax, impossible to lay in bed, suddenly having to jump up and walk around. However, it worked well and within weeks to see my blood tests improving to near-normal.
Now I am restless, waiting, without any treatment whilst my body is again under attack watching this monoclonal peak slowly climbing at 0.3 g/dL per month. At this rate, it will hit 3 g/dL in the summer of 2016, 10 months after it showed its unwelcome face lest autumn. I hope that I will see a similar response to last time once they re-start treatment.
Best wishes
Thank you for your comments. I understand your sentiments and I think you are very wise to adopt this new diet and the yoga etc.
When I was on the same treatment back in 2012, my entire body felt alive in a bad way, as though there was a huge clock spring inside of me, tightly wound, making it impossible to sit down and relax, impossible to lay in bed, suddenly having to jump up and walk around. However, it worked well and within weeks to see my blood tests improving to near-normal.
Now I am restless, waiting, without any treatment whilst my body is again under attack watching this monoclonal peak slowly climbing at 0.3 g/dL per month. At this rate, it will hit 3 g/dL in the summer of 2016, 10 months after it showed its unwelcome face lest autumn. I hope that I will see a similar response to last time once they re-start treatment.
Best wishes
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Is it okay that I'm not receiving treatment right now?
Regarding your comments about not being able to sit down, relax in bed, and having to jump up and walk around. That was a major issue for me when I was diagnosed with general anxiety disorder. It is treatable with meds and I have felt great since getting treated. You may want to investigate with your doctor.
Best of luck!
Best of luck!
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Joe H - Name: Joe H
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 50
Re: Is it okay that I'm not receiving treatment right now?
Thank you, Joe H, and I am sure we experience more anxiety than most healthy people!
My inability to relax was very physical and was predictable to within one hour each day, depending on what time I was taking the medication. It would start off as the 'restless leg' thing, my feet, although looking perfectly healthy, would feel hot and 'prickly,' like standing on a hot beach. I would find some relief from self-massage of the lower legs and from standing bare-footed on a cold tiled floor. When the entire body was affected, I could imagine what it was like to be full of radioactivity. However everything would subside after about four hours. This problem has largely disappeared since the treatments stopped in 2013.
My inability to relax was very physical and was predictable to within one hour each day, depending on what time I was taking the medication. It would start off as the 'restless leg' thing, my feet, although looking perfectly healthy, would feel hot and 'prickly,' like standing on a hot beach. I would find some relief from self-massage of the lower legs and from standing bare-footed on a cold tiled floor. When the entire body was affected, I could imagine what it was like to be full of radioactivity. However everything would subside after about four hours. This problem has largely disappeared since the treatments stopped in 2013.
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Is it okay that I'm not receiving treatment right now?
Thank you, Victor L.
My blood test result after 12 cycles came except light chain. The only difference in M-spike drop is 0.36 g/dL to 0.34 g/dL. I started treatment at 3.9 g/dL.
Looking at the drop from the eleventh to twelfth cycle and the agonizing side effects I went through in the twelfth cycle, I am not sure if it was worth it.
My blood test result after 12 cycles came except light chain. The only difference in M-spike drop is 0.36 g/dL to 0.34 g/dL. I started treatment at 3.9 g/dL.
Looking at the drop from the eleventh to twelfth cycle and the agonizing side effects I went through in the twelfth cycle, I am not sure if it was worth it.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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