Dear K_Shash:
I used to get tired. Also, I used to start huffing, puffing, and losing my breadth with little walk. All of these became excessive in the eleventh and twelfth cycle of my treatment.
How is your M-spike reading, K_Shash?
Forums
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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: Induction therapy to maintenance therapy - a transition
Hello MMFeb16,15;
I have had no measurable M-spike. Mine is light chain IgG kappa multiple myeloma, as I understand.
How are you doing without any medication? Did you have any recent tests? I hope you continue to do well. This is the first time I have come across someone like us (no transplant) doing that and doing well.
I would like to discuss the 'holiday from Revlimid' with my oncologist and, if he is OK with it, see how I respond.
I am doing quite well and feeling great this morning after a round of golf yesterday. I seem to tolerate this 20 mg alternate day Revlimid as long as I stay within my reduced endurance limits; no walk up any steep hills, slow down during any brisk walks if my chest feels heavy, and keep the walks to a minimum while playing golf. Therefore, in my case, it may not be worth the risk to drop off the Revlimid and suffer any consequences.
I have had no measurable M-spike. Mine is light chain IgG kappa multiple myeloma, as I understand.
How are you doing without any medication? Did you have any recent tests? I hope you continue to do well. This is the first time I have come across someone like us (no transplant) doing that and doing well.
I would like to discuss the 'holiday from Revlimid' with my oncologist and, if he is OK with it, see how I respond.
I am doing quite well and feeling great this morning after a round of golf yesterday. I seem to tolerate this 20 mg alternate day Revlimid as long as I stay within my reduced endurance limits; no walk up any steep hills, slow down during any brisk walks if my chest feels heavy, and keep the walks to a minimum while playing golf. Therefore, in my case, it may not be worth the risk to drop off the Revlimid and suffer any consequences.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Induction therapy to maintenance therapy - a transition
Dear K_Shash:
Our case appears very similar to me. I am also IGg kappa multiple myeloma. In my case, my hematologists are more concerned about M-spike. It did not go below 0.25.
I left Revlimid and dex on April 24. I am feeling much better. I am getting monthly blood test. Third test after being off from Revlimid plus dex is on July 24. If reading starts showing sign of going up, my hematologist will consider giving Revlimid plus dex again. That is my guess.
As I said earlier, I will have Zometa monthly, which in the beginning was every three month.
Our case appears very similar to me. I am also IGg kappa multiple myeloma. In my case, my hematologists are more concerned about M-spike. It did not go below 0.25.
I left Revlimid and dex on April 24. I am feeling much better. I am getting monthly blood test. Third test after being off from Revlimid plus dex is on July 24. If reading starts showing sign of going up, my hematologist will consider giving Revlimid plus dex again. That is my guess.
As I said earlier, I will have Zometa monthly, which in the beginning was every three month.
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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: Induction therapy to maintenance therapy - a transition
Dear K_Shash:
I got my blood test done six days earlier on July 18. Result came today. For comparison, I give recent four months result of light chain and M-spike. Rest all such as hemoglobin and and RBC are normal.
After twelfth cycle:
Date KFLCS mg/dl K/L ratio M-spike g/dl
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
There was no light chain test in May.
Should I worry with increase in my M-spike, K_Shash?
I got my blood test done six days earlier on July 18. Result came today. For comparison, I give recent four months result of light chain and M-spike. Rest all such as hemoglobin and and RBC are normal.
After twelfth cycle:
Date KFLCS mg/dl K/L ratio M-spike g/dl
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
There was no light chain test in May.
Should I worry with increase in my M-spike, K_Shash?
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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: Induction therapy to maintenance therapy - a transition
Hello MMFeb16,15.
I really cannot comment on your M-spike. I have had no measurable M-spike and my oncologist has been testing only my kappa and kappa-lambda ratio. I really never read or studied much about the M-spikes.
However, your test results show that your M-spike is essentially at the level before stopping the Revlimid treatment and it would seem that you are doing extremely well in the absence of any medication.
Same is true in your case where your kappa has dropped from 4.9 to 3.37 mg/dL! Mine is hovering around 4.0+/- mg/dL with the Revlimid maintenance. Only your oncologist can advise you on the slight rise of the kappa-lambda ratio and the M-spike climbing back to the level measured in April.
My guess is that all your parameters are pretty much stable and would not warrant the resumption of Revlimid maintenance. Again, only your oncologist would be the best judge of that.
In my case, I hope my next blood test results show some improvement. My oncologist told me that if my kappa (around 40 mg/L and kappa-lambda ratio around 1.7) remain stable, I should stay the 'course', at 20 mg Revlimid every alternate day. Fortunately, I have been feeling a lot better and it may be due to the resumption of sugar in my daily 3 mugs of coffee. I had been using sugar substitutes for the past 10 years.
My other blood tests showed that my blood glucose dropped from around 109 to 99 and I wonder if Revlimid is the indirect cause. Maybe the fatigue caused by Revlimid is due to a drop in glucose. Also, these tests showed that my cholesterol is stable, too, in spite of stopping Lipitor (atorvastatin) for 6 months. The shoulder pain and soreness caused by these drugs (Revlimid and Lipitor) is similar and maybe, just maybe, Revlimid is keeping the cholesterol down. Another member of the Myeloma Beacon community had referred me to an article showing the sugar can enhance the Revlimid effects and in large quantities may be substituted for dex!
All the best and hope you can stay off all drugs for a very, very long time.
I really cannot comment on your M-spike. I have had no measurable M-spike and my oncologist has been testing only my kappa and kappa-lambda ratio. I really never read or studied much about the M-spikes.
However, your test results show that your M-spike is essentially at the level before stopping the Revlimid treatment and it would seem that you are doing extremely well in the absence of any medication.
Same is true in your case where your kappa has dropped from 4.9 to 3.37 mg/dL! Mine is hovering around 4.0+/- mg/dL with the Revlimid maintenance. Only your oncologist can advise you on the slight rise of the kappa-lambda ratio and the M-spike climbing back to the level measured in April.
My guess is that all your parameters are pretty much stable and would not warrant the resumption of Revlimid maintenance. Again, only your oncologist would be the best judge of that.
In my case, I hope my next blood test results show some improvement. My oncologist told me that if my kappa (around 40 mg/L and kappa-lambda ratio around 1.7) remain stable, I should stay the 'course', at 20 mg Revlimid every alternate day. Fortunately, I have been feeling a lot better and it may be due to the resumption of sugar in my daily 3 mugs of coffee. I had been using sugar substitutes for the past 10 years.
My other blood tests showed that my blood glucose dropped from around 109 to 99 and I wonder if Revlimid is the indirect cause. Maybe the fatigue caused by Revlimid is due to a drop in glucose. Also, these tests showed that my cholesterol is stable, too, in spite of stopping Lipitor (atorvastatin) for 6 months. The shoulder pain and soreness caused by these drugs (Revlimid and Lipitor) is similar and maybe, just maybe, Revlimid is keeping the cholesterol down. Another member of the Myeloma Beacon community had referred me to an article showing the sugar can enhance the Revlimid effects and in large quantities may be substituted for dex!
All the best and hope you can stay off all drugs for a very, very long time.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Induction therapy to maintenance therapy - a transition
Dear K_Shash:
Thank you. I am meeting my hematologist on Tuesday. Let us see what he suggests. I honestly do not like to take any chemo. I feel much better without it.
Two things I have noticed which was not with me before. First, even a little scratch keeps bleeding for longer time and takes longer to heal. Second, I get cold and cough easily. Earlier it will go away or will not occur simply because of my daily intake of garlic and honey.
Thank you again.
Thank you. I am meeting my hematologist on Tuesday. Let us see what he suggests. I honestly do not like to take any chemo. I feel much better without it.
Two things I have noticed which was not with me before. First, even a little scratch keeps bleeding for longer time and takes longer to heal. Second, I get cold and cough easily. Earlier it will go away or will not occur simply because of my daily intake of garlic and honey.
Thank you again.
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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: Induction therapy to maintenance therapy - a transition
Update, August 3, 2016:
I repeated my blood tests on Monday and the results show that my kappa (that had bounced up to 42.4 mg/L in July from June's 38.2) is down to 39.3; and all these readings are 'stable' according to my oncologist. The kappa-lambda ratio has remained steady, too, at 1.61 from the July's 1.63 (June reading was 1.7), reconfirming that 'all is stable'.
There would be no need to continue the monthly update on this topic since I think I have settled in a maintenance phase now.
As I had written in a reply to MMFeb16,15, I started using sugar in my daily coffee (3 tsps in 3 mugs) and that may have be giving me the slightest boost I may have needed to feel quite energetic. I still get a little drowsiness after lunch, usually on the day after I take the Revlimid. I still feel breathless (as if my lungs cannot keep up) if I try to walk a little fast or walk up a steep grade but I think that, too, is to a lesser degree. I also found that if I start breathing heavily right from the beginning, I can manage these activities better.
MMFeb16,15:
Any news after your appointment with your oncologist? I think you'll have your blood test results in about 2 weeks.
I am closely following your progress (without any medication) because I would like to ask my oncologist about stopping the Revlimid completely, too. I am managing most of my activities quite well for the past few weeks. However, the long-term side effects of Revlimid, such as the increased probability of secondary cancers, is a major concern.
I repeated my blood tests on Monday and the results show that my kappa (that had bounced up to 42.4 mg/L in July from June's 38.2) is down to 39.3; and all these readings are 'stable' according to my oncologist. The kappa-lambda ratio has remained steady, too, at 1.61 from the July's 1.63 (June reading was 1.7), reconfirming that 'all is stable'.
There would be no need to continue the monthly update on this topic since I think I have settled in a maintenance phase now.
As I had written in a reply to MMFeb16,15, I started using sugar in my daily coffee (3 tsps in 3 mugs) and that may have be giving me the slightest boost I may have needed to feel quite energetic. I still get a little drowsiness after lunch, usually on the day after I take the Revlimid. I still feel breathless (as if my lungs cannot keep up) if I try to walk a little fast or walk up a steep grade but I think that, too, is to a lesser degree. I also found that if I start breathing heavily right from the beginning, I can manage these activities better.
MMFeb16,15:
Any news after your appointment with your oncologist? I think you'll have your blood test results in about 2 weeks.
I am closely following your progress (without any medication) because I would like to ask my oncologist about stopping the Revlimid completely, too. I am managing most of my activities quite well for the past few weeks. However, the long-term side effects of Revlimid, such as the increased probability of secondary cancers, is a major concern.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Induction therapy to maintenance therapy - a transition
Hi K_Shash,
Thanks for the update. Glad to hear that your numbers are stable. And glad that you are feeling a little more energetic, whether it is the sugar in your coffee causing that or something else. I can relate to your getting drowsy after lunch.
Keep on truckin'
Mike
Thanks for the update. Glad to hear that your numbers are stable. And glad that you are feeling a little more energetic, whether it is the sugar in your coffee causing that or something else. I can relate to your getting drowsy after lunch.
Keep on truckin'
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: Induction therapy to maintenance therapy - a transition
K_Shash,
Encouraging that your numbers are stable. I hope they continue this way for a long, long time.
I am getting ready to go for labs, myself, today. I have been feeling a little tired too, but I also do not sleep too well, even when not on dex. I can definitely relate to feeling a little sleepy after lunch! I find that regular exercise counteracts that, but I must admit, I am not the best at exercising regularly. I have really gotten out of the habit, which I have to work on re-establishing.
How is your golf game these days?
Regards,
Ellen Harris
Encouraging that your numbers are stable. I hope they continue this way for a long, long time.
I am getting ready to go for labs, myself, today. I have been feeling a little tired too, but I also do not sleep too well, even when not on dex. I can definitely relate to feeling a little sleepy after lunch! I find that regular exercise counteracts that, but I must admit, I am not the best at exercising regularly. I have really gotten out of the habit, which I have to work on re-establishing.
How is your golf game these days?
Regards,
Ellen Harris
Re: Induction therapy to maintenance therapy - a transition
Hello Mikeb,
I have always felt a bit drowsy after a big meal and I had to avoid any big business lunch, when I was working. Similarly, I have a hard time falling asleep if I try to go to bed on an empty stomach and often end up drinking a bottle of Ensure to get some calories. Of course, the total exhaustion I had felt a couple of time last year after a filling lunch and a walk up a couple of steep blocks was a whole new experience! I do not think I have that degree of 'chemo side effects' after stopping the Velcade and dex.
Hello Ellen,
I hope your lab results were good. Please post your progress here and I hope we can track our 'group progress' with the input from MMFeb16,15, too. I am really curious about his lab results and I hope they continue to be stable in his case. It may be possible for some of us to take a 'holiday from chemo', too; after responding well to an induction therapy.
I really cannot complain about the 20 mg every alternate day Revlimid.
Thanks for asking and yes, I had a very nice round of golf with my son yesterday. The score wasn't great (it's all in that putting!) but I was able to hit the ball very well and without any muscle strain, pain, or sprain. I did not even think of moderating my full swing at the time! We had a pretty big lunch afterwards and I did not feel too tired to drive home, about 30 minute trip.
I have also figured out that if I start breathing a bit harder and deeper to begin with, I seem to have minimal effect /exhaustion while climbing up a moderately steep hill or walking at a brisk pace.
I seem to get a good night's sleep on a regular basis; a couple of months after the dex was stopped and its lingering side effects were gone. However, I seem to need only 5 or 6 hours' sleep IF I have not exercised at all and 7 hours if I have had some good exercise. This has always been the case for me.
I often wonder, specifically in my case, what would I be doing without this maintenance dose of Revlimid that I cannot manage now? Honestly, I think I am managing most of my activities for my investments (4-hour round trips), a round or two of golf per week (using a riding cart), easily a mile or more at a decent speed, etc.
Some of my concerns about the reduced stamina may well be psychological. However, I am sure I don't have the endurance to climb a mountain (Half Dome in particular, like Mike was able to do last year). Seven years ago, when I was about Mikeb's age, I was walking 8 or 9 miles a day with a golf bag and playing 2 rounds of golf 6 days a week, which involved a fair amount of climbing up and down a few hills!
As I recall, both Mikeb and you had an autologous stem cell transplant and both of you have had all your kappa, lambda and kappa-lambda ratio 'normal'. I managed that, too, for about 5 months after stopping the weekly Velcade. However, my last 9 readings (of the blood tests repeated every 4 weeks) after stopping the dex have been stable, but the kappa has been near 40 ('normal' high 19.3) while lambda and kappa-lambda ratio are both within the 'normal' band. And I just re-read the University of Iowa article that Mikeb had referred me to, which states (and I hope it applies to non-ASCT patients that achieved a CR with induction therapy alone) that higher kappa reading may not be an indication of a relapse. IF my lab results continue to be stable, my oncologist agrees with that, too.
Again, I hope your lab results were stable and 'normal'.
I have always felt a bit drowsy after a big meal and I had to avoid any big business lunch, when I was working. Similarly, I have a hard time falling asleep if I try to go to bed on an empty stomach and often end up drinking a bottle of Ensure to get some calories. Of course, the total exhaustion I had felt a couple of time last year after a filling lunch and a walk up a couple of steep blocks was a whole new experience! I do not think I have that degree of 'chemo side effects' after stopping the Velcade and dex.
Hello Ellen,
I hope your lab results were good. Please post your progress here and I hope we can track our 'group progress' with the input from MMFeb16,15, too. I am really curious about his lab results and I hope they continue to be stable in his case. It may be possible for some of us to take a 'holiday from chemo', too; after responding well to an induction therapy.
I really cannot complain about the 20 mg every alternate day Revlimid.
Thanks for asking and yes, I had a very nice round of golf with my son yesterday. The score wasn't great (it's all in that putting!) but I was able to hit the ball very well and without any muscle strain, pain, or sprain. I did not even think of moderating my full swing at the time! We had a pretty big lunch afterwards and I did not feel too tired to drive home, about 30 minute trip.
I have also figured out that if I start breathing a bit harder and deeper to begin with, I seem to have minimal effect /exhaustion while climbing up a moderately steep hill or walking at a brisk pace.
I seem to get a good night's sleep on a regular basis; a couple of months after the dex was stopped and its lingering side effects were gone. However, I seem to need only 5 or 6 hours' sleep IF I have not exercised at all and 7 hours if I have had some good exercise. This has always been the case for me.
I often wonder, specifically in my case, what would I be doing without this maintenance dose of Revlimid that I cannot manage now? Honestly, I think I am managing most of my activities for my investments (4-hour round trips), a round or two of golf per week (using a riding cart), easily a mile or more at a decent speed, etc.
Some of my concerns about the reduced stamina may well be psychological. However, I am sure I don't have the endurance to climb a mountain (Half Dome in particular, like Mike was able to do last year). Seven years ago, when I was about Mikeb's age, I was walking 8 or 9 miles a day with a golf bag and playing 2 rounds of golf 6 days a week, which involved a fair amount of climbing up and down a few hills!
As I recall, both Mikeb and you had an autologous stem cell transplant and both of you have had all your kappa, lambda and kappa-lambda ratio 'normal'. I managed that, too, for about 5 months after stopping the weekly Velcade. However, my last 9 readings (of the blood tests repeated every 4 weeks) after stopping the dex have been stable, but the kappa has been near 40 ('normal' high 19.3) while lambda and kappa-lambda ratio are both within the 'normal' band. And I just re-read the University of Iowa article that Mikeb had referred me to, which states (and I hope it applies to non-ASCT patients that achieved a CR with induction therapy alone) that higher kappa reading may not be an indication of a relapse. IF my lab results continue to be stable, my oncologist agrees with that, too.
Again, I hope your lab results were stable and 'normal'.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
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