Hello K_Shash:
I have read all your postings.
I was diagnosed IgG kappa Stage IIA on February 16, 2015.
At diagnosis my kappa free light chain level was 56.2 and kappa / lambda ratio 65.2. After eight cycle of Revlimid plus half dose of dex it is 5.63 and 2.47, respectively. My M-spike has dropped to 0.7 from 3.9.
I am expected to finish twelve cycle and have a test if I reached CR.
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 think our kappa readings are on different scales; mg/dL vs. g/L. Therefore all mine would have to be scaled down by 10 for a direct comparison. Of course, the kappa / lambda ratios are just that, numbers only. I had no detectable M-spike because all the free light chains were leaking through the kidneys, at least that is what I was told.
Just to summarize my 'Chemo Journey' from my introductory posts about the Induction phase:
My Revlimid (15 mg daily for 3 weeks on, one week off) and 20 mg dex (1/2 dose) once a week was supplemented by the Velcade shot on the day of the dex. Apparently your regimen does not include the Velcade. I had 8 cycles of these (I believe I needed 2 extra cycles due to a high fever flu during the 4th cycle that set me back 2 cycles) before my oncologist started the 'tapering", first dropping the Velcade and then the dex, 3 more cycles later. Stopping the dex seemed to have resulted in the Revlimid rash and the Revlimid was changed to every alternate day but without the week off. I had reached CR after 8 weeks from the beginning of the chemo but now my kappa and kappa/lambda are hovering a bit over the high end of 'normal'. I am glad that my fatigue level and muscle pain are both very tolerable and I will be glad if the future tests indicate that my kappa and kappa / lambda are staying in this range.
I hope you achieve the CR and it seems you are well on the path to achieve that. Are you going to have the bone marrow biopsy to confirm it after the kappa and kappa / lambda reach the normal values? I am curious only because I have decided not to undergo another biopsy unless it's carried out under the general anesthesia.
Staging:
I am not sure how the staging was done in your case. I may have been Stage IIB or Stage III, since I started with a kappa of 1,070 (107 on the g/L scale) and a kappa / lambda = 186. However, I had NO symptom of any kind and the myeloma was discovered only after the annual physical and blood test showed high protein in the urine and after the subsequent kappa, lambda and other immunoglobulin testing (blood and urine). Of course, staging may be taking into account the bone lesions, bone marrow plasma percentage, other readings from the blood tests (creatinine, calcium, hgb..), etc. Of course once we achieve stable CR or close, the early staging doesn't really matter.
Wish you all the best and I hope you are tolerating the chemo well, without much fatigue, GI problems and other side effects.
K_Shash
I think our kappa readings are on different scales; mg/dL vs. g/L. Therefore all mine would have to be scaled down by 10 for a direct comparison. Of course, the kappa / lambda ratios are just that, numbers only. I had no detectable M-spike because all the free light chains were leaking through the kidneys, at least that is what I was told.
Just to summarize my 'Chemo Journey' from my introductory posts about the Induction phase:
My Revlimid (15 mg daily for 3 weeks on, one week off) and 20 mg dex (1/2 dose) once a week was supplemented by the Velcade shot on the day of the dex. Apparently your regimen does not include the Velcade. I had 8 cycles of these (I believe I needed 2 extra cycles due to a high fever flu during the 4th cycle that set me back 2 cycles) before my oncologist started the 'tapering", first dropping the Velcade and then the dex, 3 more cycles later. Stopping the dex seemed to have resulted in the Revlimid rash and the Revlimid was changed to every alternate day but without the week off. I had reached CR after 8 weeks from the beginning of the chemo but now my kappa and kappa/lambda are hovering a bit over the high end of 'normal'. I am glad that my fatigue level and muscle pain are both very tolerable and I will be glad if the future tests indicate that my kappa and kappa / lambda are staying in this range.
I hope you achieve the CR and it seems you are well on the path to achieve that. Are you going to have the bone marrow biopsy to confirm it after the kappa and kappa / lambda reach the normal values? I am curious only because I have decided not to undergo another biopsy unless it's carried out under the general anesthesia.
Staging:
I am not sure how the staging was done in your case. I may have been Stage IIB or Stage III, since I started with a kappa of 1,070 (107 on the g/L scale) and a kappa / lambda = 186. However, I had NO symptom of any kind and the myeloma was discovered only after the annual physical and blood test showed high protein in the urine and after the subsequent kappa, lambda and other immunoglobulin testing (blood and urine). Of course, staging may be taking into account the bone lesions, bone marrow plasma percentage, other readings from the blood tests (creatinine, calcium, hgb..), etc. Of course once we achieve stable CR or close, the early staging doesn't really matter.
Wish you all the best and I hope you are tolerating the chemo well, without much fatigue, GI problems and other side effects.
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,
Thanks for your latest posts. Congratulations on your latest kappa reading dropping a tad. It sounds like things are at least holding steady for you. Yay!
On your acyclovir question - I still am taking acyclovir, have been on it ever since starting treatment 3 years ago. I know it is an antiviral and that there's concern about myeloma patients getting shingles, which it is supposed to protect against. I am under the impression that the concern is due to a generally compromised immune system. I'm not sure about a specific link to Velcade, or whether it is more general to all agents that can disrupt the immune system, such as Revlimid in my case. I'll have to ask my doctor whether Velcade makes one especially susceptible to shingles.
Best wishes to you. Keep on trucking.
Mike
Thanks for your latest posts. Congratulations on your latest kappa reading dropping a tad. It sounds like things are at least holding steady for you. Yay!
On your acyclovir question - I still am taking acyclovir, have been on it ever since starting treatment 3 years ago. I know it is an antiviral and that there's concern about myeloma patients getting shingles, which it is supposed to protect against. I am under the impression that the concern is due to a generally compromised immune system. I'm not sure about a specific link to Velcade, or whether it is more general to all agents that can disrupt the immune system, such as Revlimid in my case. I'll have to ask my doctor whether Velcade makes one especially susceptible to shingles.
Best wishes to you. Keep on trucking.
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
Hello K Shash,
I have been away from the Beacon due to extreme side effects of high (215/15) and unstable (135/85) BP.
I was reluctant to start chemo. However, my wife, children, and my hematologist convinced me to start.
I am a severe G6PD person - a X chromosome inherited deficiency. There are not many G6PD adult experts in the USA or world except some in Israel. In summary, I am tolerant to malaria, high blood pressure and cardiovascular diseases, as per published papers. My red blood cells have half the life cycle compared to a normal person.
I can't comment much about staging. Prior to Stage IIA, I was in the indolent myeloma stage.
I started my treatment with 25 mg Revlimid plus 40 mg of dex and Zometa. I could not tolerate the side effects. Dex was reduced to half. The Zometa strength was reduced and frequency decreased from every month to every three month; the duration of IV for Zometa was increased from 15 minutes to over one hour. These changes made the side effects bearable.
Since the ninth cycle, dex has been reduced to 16 mg .
Today I finished my tenth cycle. For the first time all my blood parameters in CBP and SPEP are normal with no M-spike. But this is at my business travel location overseas, which has always given approximately 20 percent less value compared to my main treatment location in the USA.
I am continuing with the eleventh cycle after seven days break and after that I am scheduled for 24-hour urine, CBP, SPEP, IPEP, light chain kappa and lambda.
Thank you.
I have been away from the Beacon due to extreme side effects of high (215/15) and unstable (135/85) BP.
I was reluctant to start chemo. However, my wife, children, and my hematologist convinced me to start.
I am a severe G6PD person - a X chromosome inherited deficiency. There are not many G6PD adult experts in the USA or world except some in Israel. In summary, I am tolerant to malaria, high blood pressure and cardiovascular diseases, as per published papers. My red blood cells have half the life cycle compared to a normal person.
I can't comment much about staging. Prior to Stage IIA, I was in the indolent myeloma stage.
I started my treatment with 25 mg Revlimid plus 40 mg of dex and Zometa. I could not tolerate the side effects. Dex was reduced to half. The Zometa strength was reduced and frequency decreased from every month to every three month; the duration of IV for Zometa was increased from 15 minutes to over one hour. These changes made the side effects bearable.
Since the ninth cycle, dex has been reduced to 16 mg .
Today I finished my tenth cycle. For the first time all my blood parameters in CBP and SPEP are normal with no M-spike. But this is at my business travel location overseas, which has always given approximately 20 percent less value compared to my main treatment location in the USA.
I am continuing with the eleventh cycle after seven days break and after that I am scheduled for 24-hour urine, CBP, SPEP, IPEP, light chain kappa and lambda.
Thank you.
Last edited by MMFeb16,15 on Sat Feb 27, 2016 1:32 am, edited 2 times in total.
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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
Mikeb: It is Velcade that is specifically associated with shingles. My induction consisted of Revlimid, dexamethasone, and Zometa. I was not prescribed acyclovir until I started Velcade. I take 400 mg twice a day.
Re: Induction therapy to maintenance therapy - a transition
Hi mrozdav,
That's interesting. Thanks for that information about Velcade and shingles. If that's the case, then maybe my doctor will let me stop taking acyclovir since I haven't had Velcade for about 2 1/2 years now. I'll add that to my question list for my visit in mid-March.
Mike
That's interesting. Thanks for that information about Velcade and shingles. If that's the case, then maybe my doctor will let me stop taking acyclovir since I haven't had Velcade for about 2 1/2 years now. I'll add that to my question list for my visit in mid-March.
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
Hello MMFeb16,15,
Somehow I missed your post of Feb 26.
I hope your blood pressure is more stable now and overall you seem to be tolerating the lower-dose dex chemo better. I have repeatedly pointed out in my earlier posts during the induction phase that I was very fortunate and that my oncologist had reduced the induction dex dose to 20 mg from the 40 mg that the chemo pharmacy had originally written up.
There have been many accounts of myeloma patients who had problems with the high-dose dex. Some had fainted after a meal, usually caused by the side effects of the high-dose dex. I am glad you are now tolerating the revised chemo (and managing business travel to overseas destination) and doing well as shown by the latest blood test with no M-spike.
I wish you all the best and I look forward to your post showing all the great lab test results after this current 11th cycle.
K_Shash
Somehow I missed your post of Feb 26.
I hope your blood pressure is more stable now and overall you seem to be tolerating the lower-dose dex chemo better. I have repeatedly pointed out in my earlier posts during the induction phase that I was very fortunate and that my oncologist had reduced the induction dex dose to 20 mg from the 40 mg that the chemo pharmacy had originally written up.
There have been many accounts of myeloma patients who had problems with the high-dose dex. Some had fainted after a meal, usually caused by the side effects of the high-dose dex. I am glad you are now tolerating the revised chemo (and managing business travel to overseas destination) and doing well as shown by the latest blood test with no M-spike.
I wish you all the best and I look forward to your post showing all the great lab test results after this current 11th cycle.
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
Re: Induction therapy to maintenance therapy - a transition
Thank you K_Shash.
I had shingles during my latent multiple myeloma three or four years ago. I was not on any chemo. I did not realize it is shingles until I visited my dermatologist.
I notice that there area where I had shingles was swollen before (no pain), has completely subsided, and has become even with my surrounding skin.
I notice you mention Liptor for cholesterol. I was recommended but I did not go for it. I am a very conservative person when it comes to taking medicine. Another physician in the USA suggested try one clove of garlic with one spoon of honey every morning. And that is what I did. Since last seven years I am on my garlic and honey. And my cholesterol test is normal.
I will be back after my eleventh cycle which ends on March 25th and I have my detailed blood and twenty four-hour urine test results.
Thank you again.
I had shingles during my latent multiple myeloma three or four years ago. I was not on any chemo. I did not realize it is shingles until I visited my dermatologist.
I notice that there area where I had shingles was swollen before (no pain), has completely subsided, and has become even with my surrounding skin.
I notice you mention Liptor for cholesterol. I was recommended but I did not go for it. I am a very conservative person when it comes to taking medicine. Another physician in the USA suggested try one clove of garlic with one spoon of honey every morning. And that is what I did. Since last seven years I am on my garlic and honey. And my cholesterol test is normal.
I will be back after my eleventh cycle which ends on March 25th and I have my detailed blood and twenty four-hour urine test results.
Thank you again.
-
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
March 18, 2016
I got my blood test results on Wednesday and my kappa has risen again to 33.2 from 27.8. The kappa / lambda ratio dropped, however, to 1.6 from near 1.9. This is rather disappointing since my kappa continued to drop for two months to 12.5-12.6 levels from 15.9 and the kappa / lambda ratio from 1.64 to around 1.05 when the transition to maintenance dosing began in late August by stopping the Velcade shots. However, dropping the dex at the end of October AND simultaneously dropping the Revlimid dose has caused my kappa to rise to around 30 and the kappa / lambda ratio to over 1.6. I could not tolerate the old 15 mg Revlimid for 3 weeks on and 1 week off without the dex. The long-term nasty side effects of dex outweigh its advantages, according to my oncologist. Any comments?
My maintenance dose is being changed to 10 mg daily for 21 days and a 7 days off (I am currently on 15 mg every alternate day, continuously). This change will be effective at the end of next week when I run out of the current supply of the 15 mg Revlimid.
I asked my oncologist if I should not supplement the Revlimid with a small weekly dose of dex (8 mg once a week), and he decided that it would be better if only one change to my maintenance dose is made at a time. I have to agree with that logic and let's see if this helps. It would take 3 months to see any kind of trend, though.
Has anyone gone through such an experience with the maintenance dosing? I have read Nancy Stewart's post about her maintenance dose and I think eventually I may need 8 or 12 mg dex on a once a week basis, too. I was hoping that this would be my last post regarding this "transition" to maintenance, but, unfortunately, I have not 'settled into' a maintenance phase of my treatment, yet.
I am feeling quite 'normal', playing a round of golf at least once a week, managing all the activities of my usual property management business and attending parties IF there is no one with any flu symptoms. We even managed a trip to the Tahoe area snow at the end of February, and I had no fatigue of any kind while driving 3 hours each way and playing a bit with the grandkids in the snow. I still have some pain in my shoulders if I raise my arms over my shoulders. I could not possibly play tennis or badminton.
All my other parameters (HgB, RBC's WBC's, platelets, etc.) are within the 'normal' range, indicating that I am tolerating this level of Revlimid well, without the dex. I had a nasty Revlimid rash on the 11th day when I was taking the daily 15 mg Revlimid, though. It would be so nice if that kappa reading came down to the "normal" level, i.e. below 19! I am not too worried because the 30+/- level of kappa is not dangerous, based on a lot of articles I have read here and based on my oncologist stating that I could 'live' with that.
Magnesium:
I was taking 2 x 500 mg of magnesium tablets daily. When I went over any interactions of the OTC drugs I take with the oncology pharmacist, she pointed out that magnesium can cause diarrhea. I have stopped taking magnesium (for avoiding cramps) for now. Has anyone else had any experience with magnesium causing diarrhea?
I got my blood test results on Wednesday and my kappa has risen again to 33.2 from 27.8. The kappa / lambda ratio dropped, however, to 1.6 from near 1.9. This is rather disappointing since my kappa continued to drop for two months to 12.5-12.6 levels from 15.9 and the kappa / lambda ratio from 1.64 to around 1.05 when the transition to maintenance dosing began in late August by stopping the Velcade shots. However, dropping the dex at the end of October AND simultaneously dropping the Revlimid dose has caused my kappa to rise to around 30 and the kappa / lambda ratio to over 1.6. I could not tolerate the old 15 mg Revlimid for 3 weeks on and 1 week off without the dex. The long-term nasty side effects of dex outweigh its advantages, according to my oncologist. Any comments?
My maintenance dose is being changed to 10 mg daily for 21 days and a 7 days off (I am currently on 15 mg every alternate day, continuously). This change will be effective at the end of next week when I run out of the current supply of the 15 mg Revlimid.
I asked my oncologist if I should not supplement the Revlimid with a small weekly dose of dex (8 mg once a week), and he decided that it would be better if only one change to my maintenance dose is made at a time. I have to agree with that logic and let's see if this helps. It would take 3 months to see any kind of trend, though.
Has anyone gone through such an experience with the maintenance dosing? I have read Nancy Stewart's post about her maintenance dose and I think eventually I may need 8 or 12 mg dex on a once a week basis, too. I was hoping that this would be my last post regarding this "transition" to maintenance, but, unfortunately, I have not 'settled into' a maintenance phase of my treatment, yet.
I am feeling quite 'normal', playing a round of golf at least once a week, managing all the activities of my usual property management business and attending parties IF there is no one with any flu symptoms. We even managed a trip to the Tahoe area snow at the end of February, and I had no fatigue of any kind while driving 3 hours each way and playing a bit with the grandkids in the snow. I still have some pain in my shoulders if I raise my arms over my shoulders. I could not possibly play tennis or badminton.
All my other parameters (HgB, RBC's WBC's, platelets, etc.) are within the 'normal' range, indicating that I am tolerating this level of Revlimid well, without the dex. I had a nasty Revlimid rash on the 11th day when I was taking the daily 15 mg Revlimid, though. It would be so nice if that kappa reading came down to the "normal" level, i.e. below 19! I am not too worried because the 30+/- level of kappa is not dangerous, based on a lot of articles I have read here and based on my oncologist stating that I could 'live' with that.
Magnesium:
I was taking 2 x 500 mg of magnesium tablets daily. When I went over any interactions of the OTC drugs I take with the oncology pharmacist, she pointed out that magnesium can cause diarrhea. I have stopped taking magnesium (for avoiding cramps) for now. Has anyone else had any experience with magnesium causing diarrhea?
-
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
Hello K_Shash,
Yes to diarrhea being caused by magnesium. I had a problem with constipation when taking Revlimid. Magnesium worked a little bit too well. That very well could be the culprit in your case.
Let us know how you feel when you eliminate that.
Yes to diarrhea being caused by magnesium. I had a problem with constipation when taking Revlimid. Magnesium worked a little bit too well. That very well could be the culprit in your case.
Let us know how you feel when you eliminate that.
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