Thanks for sharing your experience, Ellen.
I sincerely hope you do well on the dex-Velcade maintenance. My muscle pain, more just a "soreness" was nothing in comparison with your cramps and severe pain that caused the ordeal you went through in September! Also, I have had minimal GI problems. The severe cramps stopped after dropping dex and Velcade, so did the 'crash' weekends followed by the couple of days of 'hyper' feeling caused by dex. And all these effects were getting worse with continuing cycles of the RVD.
Absolutely, the RVD or similar treatments need to have the doses tailored to the patient's weight, size, etc. This is already done for the Velcade shots but for some reason Revlimid and dex doses seem to have been prescribed on the basis of what was used in the early trials. Of course, some patients with severe symptoms may initially need heavier doses of these drugs. Even then, the drug tolerance and the potential drug resistance has to be managed carefully.
My recent Revlimid rash appeared on the 11th or 12th day of my most recent 21-day on cycle, compared to the 19th or 22nd day in the past over 11 cycles. I am sure that the weekly dex was helping in that regard. I have already gone 3 weeks without any rash (nor the severe itching that preceded the rash) on the reduced dose of Revlimid. However, I am concerned if my Kappa and K/L ratio will start rising due to the smaller dose of Revlimid maintenance. My next blood test may be affected by the flu shot I got last week. I could only find one article about the effect of a flu shot and it said one may expect a 25% jump in the Kappa level!
I hope you continue to tolerate the current maintenance therapy and your IgA and Kappa remain at the sCR levels.
K_Shash
Forums
-
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,
It's good to hear from you. But I'm sorry to hear about the muscle pain you had. I hope you continue to tolerate the lower dose of Revlimid ok. And I hope your next blood labs show that the k/l ratio has stabilized. Glad you had a good Thanksgiving!
Hi Ellen,
Boy, you went through a lot in September! I hope you continue to tolerate the RVD-R maintenance therapy ok and that it keeps you in sCR for a long time.
I have a good friend just beginning the myeloma journey who has the same 1q gain that you have. In some things I've read (such as mSMART guidelines), it's considered to be more of an intermediate risk than high risk. I guess it's up for debate how much of a risk it is, and of course, everyone is different. At any rate, it's great that you've gotten to sCR!
Mike
It's good to hear from you. But I'm sorry to hear about the muscle pain you had. I hope you continue to tolerate the lower dose of Revlimid ok. And I hope your next blood labs show that the k/l ratio has stabilized. Glad you had a good Thanksgiving!
Hi Ellen,
Boy, you went through a lot in September! I hope you continue to tolerate the RVD-R maintenance therapy ok and that it keeps you in sCR for a long time.
I have a good friend just beginning the myeloma journey who has the same 1q gain that you have. In some things I've read (such as mSMART guidelines), it's considered to be more of an intermediate risk than high risk. I guess it's up for debate how much of a risk it is, and of course, everyone is different. At any rate, it's great that you've gotten to sCR!
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
Hi Mike.
Thanks again for the encouragement..
Can you explain the meaning of sCR and CR? I think the definitions of Remission (Disease getting better), PR (Partial Response) and VGPR (Very Good Partial Response) are more self explanatory.
In my case I had assumed that I had achieved CR with my main markers, Kappa and K/L ratio in the 'normal' range but needed a BMB (Biopsy, that I do not want to undergo just to know if I have achieved sCR) to confirmI had achieved sCR.
I sure hope I can regain my strength soon and be able to play golf regularly and walk a few miles every so often. However, I cannot imagine how you could scale the Half Dome while on the Maintenance Therapy! Awesome!
K_Shash
Thanks again for the encouragement..
Can you explain the meaning of sCR and CR? I think the definitions of Remission (Disease getting better), PR (Partial Response) and VGPR (Very Good Partial Response) are more self explanatory.
In my case I had assumed that I had achieved CR with my main markers, Kappa and K/L ratio in the 'normal' range but needed a BMB (Biopsy, that I do not want to undergo just to know if I have achieved sCR) to confirmI had achieved sCR.
I sure hope I can regain my strength soon and be able to play golf regularly and walk a few miles every so often. However, I cannot imagine how you could scale the Half Dome while on the Maintenance Therapy! Awesome!
K_Shash
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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 Kshash,
You are right on with the definition of sCR. You would need a BMB to confirm with fewer than 5% plasma cells. In addition, you need negative immunofixation, normalization of free light chains and negative PET/CT. CR is all of that except the light chains. I wish either one or both for everyone!
Mikeb, thanks for your good wishes! I hope you are feeling well and still in sCR, too. I followed your tribulations with Revlimid, and it sounded really challenging! You handled it so well. I wish I had the knack. Every time there is a slight deviation in my blood work or general heath, for that matter, it is difficult for me. I guess I am a wimp!!!
Ellen
You are right on with the definition of sCR. You would need a BMB to confirm with fewer than 5% plasma cells. In addition, you need negative immunofixation, normalization of free light chains and negative PET/CT. CR is all of that except the light chains. I wish either one or both for everyone!
Mikeb, thanks for your good wishes! I hope you are feeling well and still in sCR, too. I followed your tribulations with Revlimid, and it sounded really challenging! You handled it so well. I wish I had the knack. Every time there is a slight deviation in my blood work or general heath, for that matter, it is difficult for me. I guess I am a wimp!!!
Ellen
Re: Induction therapy to maintenance therapy - a transition
Hi K_Shash and Ellen,
K_Shash,
The differences between PR, VGPR, CR, and sCR are pretty hard to keep track of. Ellen has done a good job of summarizing the differences between CR and sCR. Here is a table that details the criteria for each level of response. (http://www.nature.com/leu/journal/v20/n9/fig_tab/2404284t5.html#figure-title)
As you suspected and Ellen confirmed, you would need to get a BMB and see what % of plasma cells are in the bone marrow in order to be classified as either CR or sCR.
Thanks for your comment about my hiking up Half Dome! It was tough, but well worth the effort. Certainly a big highlight for me as I look back on this past year!
I hope you'll be back to your old self, playing golf and walking regularly again soon. As you know, everyone responds differently to the drugs we're getting. I think more than anything else, I've just been very lucky.
Ellen,
Thanks to you too for your kind comments. You put a smile on my face! I am doing well; my lab numbers from last week continue to look good. I don't think I'm still in sCR, though, because my FLC k/l ratio is slightly high. It's been that way since May, bouncing around slightly above normal. It's due to the lambda being on the low side, and at this point my doctors are not concerned about it. I was a little worried at first, but now I'm used to it being a little high. It just seems like a weird thing about my profile that we can't explain now.
My heart stuff is going pretty well. No recent light-headedness due to my heart rate being too slow. So that's really good news. It seems like I'm tolerating the new, lower Revlimid dose pretty well. However, I have had some recent episodes of atrial fibrilation. My doctors think that is not related to Revlimid or any of the other drugs I'm taking. But maybe to caffeine, so I am cutting that out completely. I'm scheduled to see the electrophysiologist on Tuesday, so we'll see what she says.
The main thing is that I'm feeling good.
And I don't think you're a wimp at all! It's only natural to be concerned with any changes when you're balanced on the knife edge that is living with multiple myeloma. My wife can tell you stories about my fretting.
Best wishes!
Mike
K_Shash,
The differences between PR, VGPR, CR, and sCR are pretty hard to keep track of. Ellen has done a good job of summarizing the differences between CR and sCR. Here is a table that details the criteria for each level of response. (http://www.nature.com/leu/journal/v20/n9/fig_tab/2404284t5.html#figure-title)
As you suspected and Ellen confirmed, you would need to get a BMB and see what % of plasma cells are in the bone marrow in order to be classified as either CR or sCR.
Thanks for your comment about my hiking up Half Dome! It was tough, but well worth the effort. Certainly a big highlight for me as I look back on this past year!
I hope you'll be back to your old self, playing golf and walking regularly again soon. As you know, everyone responds differently to the drugs we're getting. I think more than anything else, I've just been very lucky.
Ellen,
Thanks to you too for your kind comments. You put a smile on my face! I am doing well; my lab numbers from last week continue to look good. I don't think I'm still in sCR, though, because my FLC k/l ratio is slightly high. It's been that way since May, bouncing around slightly above normal. It's due to the lambda being on the low side, and at this point my doctors are not concerned about it. I was a little worried at first, but now I'm used to it being a little high. It just seems like a weird thing about my profile that we can't explain now.
My heart stuff is going pretty well. No recent light-headedness due to my heart rate being too slow. So that's really good news. It seems like I'm tolerating the new, lower Revlimid dose pretty well. However, I have had some recent episodes of atrial fibrilation. My doctors think that is not related to Revlimid or any of the other drugs I'm taking. But maybe to caffeine, so I am cutting that out completely. I'm scheduled to see the electrophysiologist on Tuesday, so we'll see what she says.
The main thing is that I'm feeling good.
And I don't think you're a wimp at all! It's only natural to be concerned with any changes when you're balanced on the knife edge that is living with multiple myeloma. My wife can tell you stories about my fretting.
Best wishes!
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
Mikeb,
It's interesting that you mentioned your free light chain ratio being slightly out of range due to a low lambda level. My ratio was also like that for the first time last month: kappa 11, lambda, 6. I think the ratio was around 1.7 ish. My doctor didn't think anything of it. He said that, since the light chains are "tiny" (his words), it's "nothing."
I was IgA kappa light chain at diagnosis, with kappa at 12,000 ...
Everything is relative!
Ellen
It's interesting that you mentioned your free light chain ratio being slightly out of range due to a low lambda level. My ratio was also like that for the first time last month: kappa 11, lambda, 6. I think the ratio was around 1.7 ish. My doctor didn't think anything of it. He said that, since the light chains are "tiny" (his words), it's "nothing."
I was IgA kappa light chain at diagnosis, with kappa at 12,000 ...
Everything is relative!
Ellen
Re: Induction therapy to maintenance therapy - a transition
Thanks Ellen for the detailed description of the the CR and sCR.
I have decided not to undergo any BMB, just to see what level of Response I have achived and since my specific case has no M-Spike and my X-Rays had shown multiple but mild lesions, I will have to stay with the Kappa and K/L ratio levels to monitor my overall response to the treatment. As you pointed out those levels are the main differentiation between CR and sCR.
Finally (only since yesterday), I am able to change shirts and do some basic arm stretches without the pain in my arms and shoulders. I still experience a little discomfort while doing that but this is a major improvement. Throughout these last 5 weeks after dropping the Dex from my treatment, I have had no problems with my appetite or with the overall digestion. I have had no difficulty taking long and brisk walks all these weeks after stopping Dex. No muscle cramps, either; which may be the benefit of the daily Magnesium. Since going on the alternate day Revlimid, I have developed no rash but I do feel very itchy every so often, particularly after a shower.
I am anxious to see if the next few blood tests indicate my Kappa level and the K/L ratio dropping to the middle of the 'Normal' range. That would indicate that I can 'live with' my Myeloma at this Maintenance dose of Revlimid.
Mikeb,
Yes, I am planning on playing a round of golf next week. I could have done that earlier because I have had no pain while swinging the club (the pain was felt only when I lifted my arms over my shoulders). Maybe being forced to keep my arms close to the body will improve my game!
I have decided not to undergo any BMB, just to see what level of Response I have achived and since my specific case has no M-Spike and my X-Rays had shown multiple but mild lesions, I will have to stay with the Kappa and K/L ratio levels to monitor my overall response to the treatment. As you pointed out those levels are the main differentiation between CR and sCR.
Finally (only since yesterday), I am able to change shirts and do some basic arm stretches without the pain in my arms and shoulders. I still experience a little discomfort while doing that but this is a major improvement. Throughout these last 5 weeks after dropping the Dex from my treatment, I have had no problems with my appetite or with the overall digestion. I have had no difficulty taking long and brisk walks all these weeks after stopping Dex. No muscle cramps, either; which may be the benefit of the daily Magnesium. Since going on the alternate day Revlimid, I have developed no rash but I do feel very itchy every so often, particularly after a shower.
I am anxious to see if the next few blood tests indicate my Kappa level and the K/L ratio dropping to the middle of the 'Normal' range. That would indicate that I can 'live with' my Myeloma at this Maintenance dose of Revlimid.
Mikeb,
Yes, I am planning on playing a round of golf next week. I could have done that earlier because I have had no pain while swinging the club (the pain was felt only when I lifted my arms over my shoulders). Maybe being forced to keep my arms close to the body will improve my game!
-
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
January 11, 2016
Happy New Year, everyone.
I have had my blood test results since December 23, 2015 (test conducted on December 21, 2015). The results were a little disappointing (Kappa went up to 27.7 (from 19.7 in the prior test on November 23) as my Kappa rose by about 40%. However, the K/L ratio went up to 1.87 (from 1.56), about 20% increase. The Kappa and Lambda may have risen due to the reaction to the flu shot I had taken. My oncologist essentially told me not to worry and we'll just have to wait and see.
However, I think that there were two other contributing factors: my Revlimid dose was dropped about 6 weeks prior to that test and the dex was stopped 8 weeks prior to this recent test. Also, my oncologist is against using even a 8 mg/week dose of dex. I believe that such a supplement will help (as Nancy Srewart's post of January 4, 2016 indicates that she has had a good response / positive experience with Revlimid taken with the weekly dex). My oncologist doesn't want me to take any dex, at least till blood test results show a consistent change. As I recall, the majority of myeloma patients seem to be on Revlimd-only maintenance.
I also had weeks of pain in my shoulder after playing golf. Since it had been a whole year since the last X-rays, I had the whole-body X-rays again to rule out any bone damage. These X-rays were taken just before Christmas and apparently there is nothing to be concerned about. My oncologist told me that it was OK to play golf but 'just don't get hurt!'. Fortunately, that pain in my right shoulder, more like a pulled muscle or tendon, is all but gone now.
I did get the pneumo (PCV 13) shot when I had my X-rays and the blood test, after my oncologist OK'ed it. I had a pretty strong reaction to that shot, unlike the prior pneumo or other flu shots. I had a low grade fever for a few days and a sore left arm for almost a week. Both my shoulders and arms have been sore for months, more so since the dex was stopped. It is possible that the Lipitor I take for my cholestrol is causing this problem due to an interaction with the Revlimid. I am going to take the Lipitor every other day and see if that helps and would have to check my lipid panel more often to make sure my cholestrol doesn't go too high.
I hope everyone had a great holiday season. We sure did. The grandkids were healthy after being home for almost a week before the Christmas day and then all of them came over for 3 days. Couldn't have asked for a better week!
It has been cold and rainy in the Bay area but the forecast for this week is for clear skies and I plan to play at least a round of golf. Of course, I plan to keep my swing in check and not separate my arms from the upper body (easier said than done).
I also read that the acyclovir that is prescribed for preventing shingles also causes muscle and joint pain. My oncologist just advised me to keep the same dose of acyclovir, to drop the Lipitor altogether and that I should see an improvement in my bursitis symptoms (shoulder joint and arm muscles pain) after a couple of weeks. I will have to watch my cholestrol, though.
This transition has been quite a problem in tat I do not yet know what limitations to adjust my routine for. I sure hope that next week's blood test shows an improvement in my Kappa and K/L ratio.
K_Shash
Happy New Year, everyone.
I have had my blood test results since December 23, 2015 (test conducted on December 21, 2015). The results were a little disappointing (Kappa went up to 27.7 (from 19.7 in the prior test on November 23) as my Kappa rose by about 40%. However, the K/L ratio went up to 1.87 (from 1.56), about 20% increase. The Kappa and Lambda may have risen due to the reaction to the flu shot I had taken. My oncologist essentially told me not to worry and we'll just have to wait and see.
However, I think that there were two other contributing factors: my Revlimid dose was dropped about 6 weeks prior to that test and the dex was stopped 8 weeks prior to this recent test. Also, my oncologist is against using even a 8 mg/week dose of dex. I believe that such a supplement will help (as Nancy Srewart's post of January 4, 2016 indicates that she has had a good response / positive experience with Revlimid taken with the weekly dex). My oncologist doesn't want me to take any dex, at least till blood test results show a consistent change. As I recall, the majority of myeloma patients seem to be on Revlimd-only maintenance.
I also had weeks of pain in my shoulder after playing golf. Since it had been a whole year since the last X-rays, I had the whole-body X-rays again to rule out any bone damage. These X-rays were taken just before Christmas and apparently there is nothing to be concerned about. My oncologist told me that it was OK to play golf but 'just don't get hurt!'. Fortunately, that pain in my right shoulder, more like a pulled muscle or tendon, is all but gone now.
I did get the pneumo (PCV 13) shot when I had my X-rays and the blood test, after my oncologist OK'ed it. I had a pretty strong reaction to that shot, unlike the prior pneumo or other flu shots. I had a low grade fever for a few days and a sore left arm for almost a week. Both my shoulders and arms have been sore for months, more so since the dex was stopped. It is possible that the Lipitor I take for my cholestrol is causing this problem due to an interaction with the Revlimid. I am going to take the Lipitor every other day and see if that helps and would have to check my lipid panel more often to make sure my cholestrol doesn't go too high.
I hope everyone had a great holiday season. We sure did. The grandkids were healthy after being home for almost a week before the Christmas day and then all of them came over for 3 days. Couldn't have asked for a better week!
It has been cold and rainy in the Bay area but the forecast for this week is for clear skies and I plan to play at least a round of golf. Of course, I plan to keep my swing in check and not separate my arms from the upper body (easier said than done).
I also read that the acyclovir that is prescribed for preventing shingles also causes muscle and joint pain. My oncologist just advised me to keep the same dose of acyclovir, to drop the Lipitor altogether and that I should see an improvement in my bursitis symptoms (shoulder joint and arm muscles pain) after a couple of weeks. I will have to watch my cholestrol, though.
This transition has been quite a problem in tat I do not yet know what limitations to adjust my routine for. I sure hope that next week's blood test shows an improvement in my Kappa and K/L ratio.
K_Shash
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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,
Happy New Year to you, and thanks for the update.
I agree with your oncologist – don't worry too much about the kappa free light chain increase. Those numbers can bounce around quite a bit from test to test. And your kappa / lambda ratio is only slightly high. What's more important is the trend across several months of tests.
Glad to hear that you had a nice Christmas with the grandchildren.
I hope dropping the Lipitor helps your joint pain. And I hope you enjoy your golf outings!
Mike
Happy New Year to you, and thanks for the update.
I agree with your oncologist – don't worry too much about the kappa free light chain increase. Those numbers can bounce around quite a bit from test to test. And your kappa / lambda ratio is only slightly high. What's more important is the trend across several months of tests.
Glad to hear that you had a nice Christmas with the grandchildren.
I hope dropping the Lipitor helps your joint pain. And I hope you enjoy your golf outings!
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
1.22.2016
Thanks for the encouraging comments, Mike.
The latest Blood Test results are a mixed bag; K/L ratio remained the same at 1.87 (Normal range 0.26 - 1.65) but the Kappa itself rose to 31.6 from 27.7 (normal range 3.3 -19.40). My Oncologist advised me to stay the course and NOT change anything... basically NOT to worry about it.
It has been barely 2 weeks since I stopped taking my daily Lipitor for the high Cholestrol and I am already feeling so much better! I have been able to restart my stretches and even some push ups, at a reduced level for now. But it feels great without the constant sore shoulders and arm muscles. Push ups were out of the question for the last three months. The combined effect of the Statin Drugs and the cumulative effect of the Revlimid seems to have been too much; particularly after 8 or 10 months of Revlimid. I am lucky that I seem to manage the current level of Revlimid with just a bit of upset stomach and dry skin. And IF my Kappa and K/L remain stable, I am a happy patient with a manageable QOL!
I think the last bump in my Kappa (and also the Lambda based on the unchanged K/L ratio) was a reaction to the Pneumo-PCV13 vaccine and I hope the readings are closer to normal the next time.
I would appreciate any comments or personal experience regarding these Kappa and K/L ratio readings any one of you have and what your Oncologists are recommending about them, during the Maintenance.
K_Shash
Thanks for the encouraging comments, Mike.
The latest Blood Test results are a mixed bag; K/L ratio remained the same at 1.87 (Normal range 0.26 - 1.65) but the Kappa itself rose to 31.6 from 27.7 (normal range 3.3 -19.40). My Oncologist advised me to stay the course and NOT change anything... basically NOT to worry about it.
It has been barely 2 weeks since I stopped taking my daily Lipitor for the high Cholestrol and I am already feeling so much better! I have been able to restart my stretches and even some push ups, at a reduced level for now. But it feels great without the constant sore shoulders and arm muscles. Push ups were out of the question for the last three months. The combined effect of the Statin Drugs and the cumulative effect of the Revlimid seems to have been too much; particularly after 8 or 10 months of Revlimid. I am lucky that I seem to manage the current level of Revlimid with just a bit of upset stomach and dry skin. And IF my Kappa and K/L remain stable, I am a happy patient with a manageable QOL!
I think the last bump in my Kappa (and also the Lambda based on the unchanged K/L ratio) was a reaction to the Pneumo-PCV13 vaccine and I hope the readings are closer to normal the next time.
I would appreciate any comments or personal experience regarding these Kappa and K/L ratio readings any one of you have and what your Oncologists are recommending about them, during the Maintenance.
K_Shash
-
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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