Dear Mr K,
Very nice as always to see your wonderful, encouraging posts. Wishing you very well. An update on my father: He has stopped chemo and maintenance since he turned 80 in March. We also have not forced him to restart his chemo. He is doing very well so far except for the myeloma fatigue every so often.
Happy rest of 2016 to you.
Forums
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Cmouli - Name: Cmouli
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Nov 4, 2014
- Age at diagnosis: 78
Re: Induction therapy to maintenance therapy - a transition
Thanks, Anu.
I am glad your Dad is doing well for almost 6 months after stopping all the chemo and maintenance. This would give your Dad a lot of time to regain a lot of his energy and resume his activities. I don't know if you are following MMFeb16,15's posts about his progress after stopping his chemo about 3 months ago.
I am sure, like MMFeb16,15, your Dad is getting his monthly blood tests to make sure your Dad's myeloma doesn't suddenly return and goes untreated.
I am hoping that I can withstand this 20 mg alternate day Revlimid with the current activity level for a long, long time. I am,also wondering if, after many more months of stable blood test results, my oncologist would agree to a trial Revlimid (chemo) holiday. On the other hand, I have read accounts of a number of myeloma patients managing well on 15+ years of Revlimid or thalidomide maintenance.
I remember you had sent me the article (or a link to it) about the effectiveness of sugar in large quantities used to substitute dex. Recently I looked at a chart of vitamin E's angiogenetic properties. I wonder if that can help, too. I am sure it cannot hurt. Therefore, I have added vitamin E to supplement my daily intake of B complex.
Again, I wish your Dad many chemo free healthy and active years.
I am glad your Dad is doing well for almost 6 months after stopping all the chemo and maintenance. This would give your Dad a lot of time to regain a lot of his energy and resume his activities. I don't know if you are following MMFeb16,15's posts about his progress after stopping his chemo about 3 months ago.
I am sure, like MMFeb16,15, your Dad is getting his monthly blood tests to make sure your Dad's myeloma doesn't suddenly return and goes untreated.
I am hoping that I can withstand this 20 mg alternate day Revlimid with the current activity level for a long, long time. I am,also wondering if, after many more months of stable blood test results, my oncologist would agree to a trial Revlimid (chemo) holiday. On the other hand, I have read accounts of a number of myeloma patients managing well on 15+ years of Revlimid or thalidomide maintenance.
I remember you had sent me the article (or a link to it) about the effectiveness of sugar in large quantities used to substitute dex. Recently I looked at a chart of vitamin E's angiogenetic properties. I wonder if that can help, too. I am sure it cannot hurt. Therefore, I have added vitamin E to supplement my daily intake of B complex.
Again, I wish your Dad many chemo free healthy and active years.
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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
Hello K_Shash and everyone else,
I met with my hematologist last week to discuss the July 18 blood test results which I posted earlier.
My hematologist sounds optimistic and wants me to stay the course without any treatment, but continuing with monthly Zometa. He wanted me to come back after two months, but my wife suggested monthly blood test and monthly visits to him. So he agreed.
My next blood test is on August 22. I am going to be four months without treatment and I feel great. My last side effect to go was bloating or swelling of my feet, arms, etc.
My hematologist is suggesting a PET/CT scan and bone marrow biopsy. He will decide it based on my next blood test report. The last time I had a bone marrow biopsy and PET/CT scan was in September 2015, just before my stem cell collection. I am not sure if I need a bone marrow biopsy. I can understand PET/CT scan as a tiny lytic bone lesion on my lower spine was the only symptom found in February 2015 to declare me being active stage 2 IgG kappa multiple myeloma.
I welcome and appreciate any comments or suggestions.
I met with my hematologist last week to discuss the July 18 blood test results which I posted earlier.
My hematologist sounds optimistic and wants me to stay the course without any treatment, but continuing with monthly Zometa. He wanted me to come back after two months, but my wife suggested monthly blood test and monthly visits to him. So he agreed.
My next blood test is on August 22. I am going to be four months without treatment and I feel great. My last side effect to go was bloating or swelling of my feet, arms, etc.
My hematologist is suggesting a PET/CT scan and bone marrow biopsy. He will decide it based on my next blood test report. The last time I had a bone marrow biopsy and PET/CT scan was in September 2015, just before my stem cell collection. I am not sure if I need a bone marrow biopsy. I can understand PET/CT scan as a tiny lytic bone lesion on my lower spine was the only symptom found in February 2015 to declare me being active stage 2 IgG kappa multiple myeloma.
I welcome and appreciate any comments or suggestions.
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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
Great to hear from you MMFeb16,15.
It seems you are managing quite well without any chemo and the monthly Zometa is just to make sure your bones are strong. I am glad you are going to be monitored every month to make sure that any monoclonal activity is treated right away.
My own blood test will be on August 29 and I am hoping that the results show that all my parameters are stable. As I mentioned in my last post, I am tolerating my treatment well and managing all my activities.
Your hematologist seems to be pretty happy that your blood tests are stable (by the very suggestion of the blood tests could be every other month), and I am sure the next week's results will confirm that.
It seems you are managing quite well without any chemo and the monthly Zometa is just to make sure your bones are strong. I am glad you are going to be monitored every month to make sure that any monoclonal activity is treated right away.
My own blood test will be on August 29 and I am hoping that the results show that all my parameters are stable. As I mentioned in my last post, I am tolerating my treatment well and managing all my activities.
Your hematologist seems to be pretty happy that your blood tests are stable (by the very suggestion of the blood tests could be every other month), and I am sure the next week's results will confirm that.
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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
It seems I am still settling down in a long-term maintenance protocol.
I had been on the same alternate day 20 mg Revlimid (and the daily 81 mg aspirin to prevent clots) for the 5 or 6 4-week cycles and my kappa was stable in the 38.2 - 42.4 mg/L range and the kappa / lambda ratio at 1.6. The main side effect I experience is the 'the day after, afternoon fatigue and drowsiness' after the Revlimid I take every other night just before going to bed.
After reading the posts from MMFeb16,15 and coachhoke, I urged my oncologist to let me try a reduced dose of Revlimid (he is against any Revlimid holiday) and he agreed to let me try a reduced Revlimid dose of an alternate day 15 mg (which was alternate day 20 mg for almost 6 months). He warned me that I would have worsening results with the reduced dosing of Revlimid. However, my latest blood test results showed that the kappa is still stable (dropped from 41.5 to 40.8) and the kappa / lambda ratio dropped significantly from a stable 1.6 to 1.39! My lambda reading has risen from 25.9 to 29.3 (above the 'normal 26.3 mg/L) and my oncologist advised me that the latter is nothing to worry about.
I guess the 'excess' (above the kappa suppressing optimum dose) Revlimid may have been suppressing the lambda (free light chain-producing plasma cells) and the lower dose helped let that reading rise and let the kappa / lambda ratio drop significantly (an inverse gauge of monoclonal activity). Also, these latest results only show the effects of the reduced Revlimid dosing for the 3 out of the past 4 weeks since the change could only be made in mid-cycle. I hope that the next couple of cycles show a little more improvement, particularly in the kappa / lambda ratio, and I hope for a significant improvement in the side effects – mainly the alternate day afternoon drowsiness and fatigue.
I think coachhoke had asked why the oncologists were prescribing the highest tolerable dose of Revlimid. I am planning on asking my oncologist to try and lower my Revlimid dose further IF all my blood test results continue to be stable. I think he will agree only if I have at least 5 or 6 stable readings of kappa and kappa / lambda ratio. I hope the lowest dose that manages to keep my myeloma stable and under control would result in tolerable side effects and it would also allow for the future increase in the Revlimid dose if my kappa or kappa / lambda ratio start rising. And the lower the dose the longer one should be able to tolerate the drug.
I am really not sure if the 'normal range' of kappa is a "bell curve" and some people do have a benign 40 mg/L kappa level, a normal for them. My kappa was stable for 3 months in the 12.5 mg/L level after my Velcade was stopped after 8 cycles of the induction phase till the dex (20 mg once a week) was stopped. I could not tolerate the 15 mg x 21 day Revlimid without the dex and my 3-weeks on and 1-week off 15 mg Revlimid was changed to alternate day 15 mg Revlimid. A 10 mg Revlimid x 3-weeks on, 1 week off and an alternate day 20 mg was prescribed for over 10 cycles and nothing could stop the rise in kappa to the 40 mg/L level. The kappa / lambda ratio fortunately stabilized at 1.6; rising from a low of 1.04 to 1.89 during this transition. I wonder if dex by itself can be as effective. Of course, like any other steroid, it has dangerous long-term side effects. I also wonder if my kappa was always in the 40 mg/L range and the lambda around the 30 mg/L. Any research papers on this subject?
I hope there are many others in our Myeloma Beacon community that have some experience with a Revlimid holiday (non-transplant) and possibly with the reduced dosing. Please let me know about your experience. MMFeb16,15 and coachhoke have recently documented their blood test results with such changes in their treatment. I am hoping that a 5 mg alternate day Revlimid is all I would need. I am assuming that most of the oncologists are avoiding dex completely.
I had been on the same alternate day 20 mg Revlimid (and the daily 81 mg aspirin to prevent clots) for the 5 or 6 4-week cycles and my kappa was stable in the 38.2 - 42.4 mg/L range and the kappa / lambda ratio at 1.6. The main side effect I experience is the 'the day after, afternoon fatigue and drowsiness' after the Revlimid I take every other night just before going to bed.
After reading the posts from MMFeb16,15 and coachhoke, I urged my oncologist to let me try a reduced dose of Revlimid (he is against any Revlimid holiday) and he agreed to let me try a reduced Revlimid dose of an alternate day 15 mg (which was alternate day 20 mg for almost 6 months). He warned me that I would have worsening results with the reduced dosing of Revlimid. However, my latest blood test results showed that the kappa is still stable (dropped from 41.5 to 40.8) and the kappa / lambda ratio dropped significantly from a stable 1.6 to 1.39! My lambda reading has risen from 25.9 to 29.3 (above the 'normal 26.3 mg/L) and my oncologist advised me that the latter is nothing to worry about.
I guess the 'excess' (above the kappa suppressing optimum dose) Revlimid may have been suppressing the lambda (free light chain-producing plasma cells) and the lower dose helped let that reading rise and let the kappa / lambda ratio drop significantly (an inverse gauge of monoclonal activity). Also, these latest results only show the effects of the reduced Revlimid dosing for the 3 out of the past 4 weeks since the change could only be made in mid-cycle. I hope that the next couple of cycles show a little more improvement, particularly in the kappa / lambda ratio, and I hope for a significant improvement in the side effects – mainly the alternate day afternoon drowsiness and fatigue.
I think coachhoke had asked why the oncologists were prescribing the highest tolerable dose of Revlimid. I am planning on asking my oncologist to try and lower my Revlimid dose further IF all my blood test results continue to be stable. I think he will agree only if I have at least 5 or 6 stable readings of kappa and kappa / lambda ratio. I hope the lowest dose that manages to keep my myeloma stable and under control would result in tolerable side effects and it would also allow for the future increase in the Revlimid dose if my kappa or kappa / lambda ratio start rising. And the lower the dose the longer one should be able to tolerate the drug.
I am really not sure if the 'normal range' of kappa is a "bell curve" and some people do have a benign 40 mg/L kappa level, a normal for them. My kappa was stable for 3 months in the 12.5 mg/L level after my Velcade was stopped after 8 cycles of the induction phase till the dex (20 mg once a week) was stopped. I could not tolerate the 15 mg x 21 day Revlimid without the dex and my 3-weeks on and 1-week off 15 mg Revlimid was changed to alternate day 15 mg Revlimid. A 10 mg Revlimid x 3-weeks on, 1 week off and an alternate day 20 mg was prescribed for over 10 cycles and nothing could stop the rise in kappa to the 40 mg/L level. The kappa / lambda ratio fortunately stabilized at 1.6; rising from a low of 1.04 to 1.89 during this transition. I wonder if dex by itself can be as effective. Of course, like any other steroid, it has dangerous long-term side effects. I also wonder if my kappa was always in the 40 mg/L range and the lambda around the 30 mg/L. Any research papers on this subject?
I hope there are many others in our Myeloma Beacon community that have some experience with a Revlimid holiday (non-transplant) and possibly with the reduced dosing. Please let me know about your experience. MMFeb16,15 and coachhoke have recently documented their blood test results with such changes in their treatment. I am hoping that a 5 mg alternate day Revlimid is all I would need. I am assuming that most of the oncologists are avoiding dex completely.
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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,
My mother was diagnosed with multiple myeloma in June 2014. She had her treatment in Russia with Velcade - 8 courses, then she was in remission for almost a year, and then myeloma returned back. They started to give her Velcade with Revlimid and looks like it was successful. However, we really worry about her kidneys. Though they moved her to the maintenance phase now, she continues taking her Revlimid 25 mg for 21 days on 7 days off.
We are not very happy and trust the oncologists there and I am trying to supply her with all relevent information from here. My sister and I are trying to talk to her doctor about Revlimid dosage reducing, but I wanted to check with you as I do not see any further posts what is your current dosage while you are on maintenance? Plus how frequently they make all the blood tests for you, or maybe they make any additional tests. My mother has to always push her doctor to check her blood, she did not have such checks for 3 months until she pushed to do so.
Thank you and I hope you can answer my questions, and good luck with your treatment! We really believe in a bright future with all recent drugs!
Tatiana
My mother was diagnosed with multiple myeloma in June 2014. She had her treatment in Russia with Velcade - 8 courses, then she was in remission for almost a year, and then myeloma returned back. They started to give her Velcade with Revlimid and looks like it was successful. However, we really worry about her kidneys. Though they moved her to the maintenance phase now, she continues taking her Revlimid 25 mg for 21 days on 7 days off.
We are not very happy and trust the oncologists there and I am trying to supply her with all relevent information from here. My sister and I are trying to talk to her doctor about Revlimid dosage reducing, but I wanted to check with you as I do not see any further posts what is your current dosage while you are on maintenance? Plus how frequently they make all the blood tests for you, or maybe they make any additional tests. My mother has to always push her doctor to check her blood, she did not have such checks for 3 months until she pushed to do so.
Thank you and I hope you can answer my questions, and good luck with your treatment! We really believe in a bright future with all recent drugs!
Tatiana
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Tanja07 - Name: Tanja
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: My mother was diagnosed in 2014
Re: Induction therapy to maintenance therapy - a transition
Hello Tatiana,
I could not even tolerate the 15 mg for 21 days on and 7 days off without the dex (weekly 20 mg).
I was on 20 mg alternate day Revlimid (no dex) for about 6 months and my kappa and K/L was stable. I have been on a 15 mg alternate day Revlimid now for almost 7 weeks.
When my dose was 20 mg, I was still feeling quite tired and I read coachhoke's posts about how, in his personal case, even a 2.5 mg (21 days on and 7 days off) dose of Revlimid is working for him. Therefore, I asked my oncologist to let me try a reduced dose of an alternate day 15 mg of Revlimid (no dex). That was in late September and I have had only one kappa/lambda test since then, at the end of October. My test results showed that my kappa and K/L ratio were both stable. I will have another blood test on Monday, November 21. I will know the results on Nov. 23 and I will post them on this thread as soon as I get them.
My blood tests are repeated every 4 weeks. I think this is pretty common based on the posts by MMFeb16,15 and others.
It is hard to say and I am not sure whether the Revlimid dose I can tolerate has anything to do with my being a small person, weighing 125 - 130 lbs. Certainly, everyone responds differently to these drugs. I could not have tolerated the larger 40 mg weekly dex that is often prescribed for the induction phase and as I found out, I could not even tolerate the daily 15 mg Revlimid (21 days on 7 days off and no dex) after 11 days. I had developed a severe rash on both my legs.
I hope your mother's myeloma is stable and that she does not need such a high dose of Revlimid.
I could not even tolerate the 15 mg for 21 days on and 7 days off without the dex (weekly 20 mg).
I was on 20 mg alternate day Revlimid (no dex) for about 6 months and my kappa and K/L was stable. I have been on a 15 mg alternate day Revlimid now for almost 7 weeks.
When my dose was 20 mg, I was still feeling quite tired and I read coachhoke's posts about how, in his personal case, even a 2.5 mg (21 days on and 7 days off) dose of Revlimid is working for him. Therefore, I asked my oncologist to let me try a reduced dose of an alternate day 15 mg of Revlimid (no dex). That was in late September and I have had only one kappa/lambda test since then, at the end of October. My test results showed that my kappa and K/L ratio were both stable. I will have another blood test on Monday, November 21. I will know the results on Nov. 23 and I will post them on this thread as soon as I get them.
My blood tests are repeated every 4 weeks. I think this is pretty common based on the posts by MMFeb16,15 and others.
It is hard to say and I am not sure whether the Revlimid dose I can tolerate has anything to do with my being a small person, weighing 125 - 130 lbs. Certainly, everyone responds differently to these drugs. I could not have tolerated the larger 40 mg weekly dex that is often prescribed for the induction phase and as I found out, I could not even tolerate the daily 15 mg Revlimid (21 days on 7 days off and no dex) after 11 days. I had developed a severe rash on both my legs.
I hope your mother's myeloma is stable and that she does not need such a high dose of Revlimid.
-
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
August 2019 Update: Back to Induction Therapy?
It is almost 3 years since my last post on this topic. I have been on the Revlimid-only maintenance for almost 4 years now. I was very happy that at the end of 2018 my main 'markers', the kappa and kappa-lambda ratio were quite stable; year over year! Kappa 66.3 vs. 64.4 mg/L and the kappa-lambda ratio 1.97 Vs. 1.91. The only concern was my hemoglogin had dropped to 10.4 from 12.4 over the year. However, it was 11.8 only two months prior to that in October 2018 test.
However, everything seems to have gone wrong since then. First, my hemoglobin dropped to 10 in the next test (January 2019) and I stopped all the alcohol consumption and asked my oncologist to see if I could drop my Revlimid maintenance dose from 20 mg back down to 15 mg, every alternate day. I, myself, had asked him to raise the dose a few months prior to that to see to see if it would help reduce my kappa-lambda ratio. It really had not helped at all. The alcohol was stopped to help the MCV readings which had increased from 101 to 110 and that was a probable cause of the lower HgB, according to some articles read on he subject.
My HgB recovered to 10.7 and the MCV came down to around 102-103 level but the kappa started rising steadily from the 66+/- level to the most recent 137 mg/L and the kappa-lambda ratio more than doubled to 4.31 from 2.0+/- level (my free light chain results through June are in the table below).. I have been feeling great throughout this time, over a year and a half from the beginning of 2018. However, these values plotted on a graph show a stable kappa and kappa-lambda ratio, both rising abruptly for the past 6 4-week cycles.
Date Kappa Lambda K/L
2018-10-22 70.66 39.54 1.79
2018-11-19 62.61 31.25 1.97
2018-12-17 66.3 33.6 1.97
2019-02-11 73.63 32.58 2.26
2019-03-11 92.81 35.8 2.61
2019-04-08 89.6 32.93 2.72
2019-05-06 96.8 30.98 3.12
2019-06-03 116.5 32.15 3.62
My oncologist ordered a PET scan and it shows a couple of problem areas; a 1.0 x 0.5 cm lytic lesion in the right proximal clavicle AND a 1.7 x 1.3 x 1.5 cm lytic lesion. I think they showed up as the FDG optake on the PET/CT scan which detects the unusual metabolic activity. The T4 lesion is rated 'mild to moderate' (SUV Max 3.6) and the one in the clavical area is "Prominent (SUV Max 5.8). The lesion on T4 is worrisome because of a fracture of a vertebra can be a big problem. Therefore, I will get a Spinal MRI early next week before deciding on the next stesps.
Already my oncologist has increased my maintenance Revlimid dose to an alternate day 25 mg. I had already stopped taking the high dose of glucosamine over a month ago after I found out that it apparently is 'contraindicated' for the myeloma patients. I was taking it for my knee pain. I am also managing my acid reflux from the biotin in the curcumin, 1500 mg tablets with a ranitidine. I hope all that helps, too.
I am not sure if I can add the Velcade (and dex) to my current therapy and essentially repeat a few cycles of the induction therapy in early 2015. I had responded to it very well and I hope it works well this time around, too. A research paper I read seemed to indicate that the lytic lesions may be reversible with RVD treatment and I hope that is the case for me, too.
I think MMFeb16,15 has had higher but stable kappa and kappa-lambda ratioL readings, even after stopping all the Revlimid maintenance. I think his PET scan was clear, too. I have been reading up on his diet and trying to follow it. Most of the medical professionals don't seem to take that seriously, though. The glucosamine is another example; its side effect to protect the myeloma cells from the treatment is not well understood or reported in any pharmacy database.
It is almost 3 years since my last post on this topic. I have been on the Revlimid-only maintenance for almost 4 years now. I was very happy that at the end of 2018 my main 'markers', the kappa and kappa-lambda ratio were quite stable; year over year! Kappa 66.3 vs. 64.4 mg/L and the kappa-lambda ratio 1.97 Vs. 1.91. The only concern was my hemoglogin had dropped to 10.4 from 12.4 over the year. However, it was 11.8 only two months prior to that in October 2018 test.
However, everything seems to have gone wrong since then. First, my hemoglobin dropped to 10 in the next test (January 2019) and I stopped all the alcohol consumption and asked my oncologist to see if I could drop my Revlimid maintenance dose from 20 mg back down to 15 mg, every alternate day. I, myself, had asked him to raise the dose a few months prior to that to see to see if it would help reduce my kappa-lambda ratio. It really had not helped at all. The alcohol was stopped to help the MCV readings which had increased from 101 to 110 and that was a probable cause of the lower HgB, according to some articles read on he subject.
My HgB recovered to 10.7 and the MCV came down to around 102-103 level but the kappa started rising steadily from the 66+/- level to the most recent 137 mg/L and the kappa-lambda ratio more than doubled to 4.31 from 2.0+/- level (my free light chain results through June are in the table below).. I have been feeling great throughout this time, over a year and a half from the beginning of 2018. However, these values plotted on a graph show a stable kappa and kappa-lambda ratio, both rising abruptly for the past 6 4-week cycles.
Date Kappa Lambda K/L
2018-10-22 70.66 39.54 1.79
2018-11-19 62.61 31.25 1.97
2018-12-17 66.3 33.6 1.97
2019-02-11 73.63 32.58 2.26
2019-03-11 92.81 35.8 2.61
2019-04-08 89.6 32.93 2.72
2019-05-06 96.8 30.98 3.12
2019-06-03 116.5 32.15 3.62
My oncologist ordered a PET scan and it shows a couple of problem areas; a 1.0 x 0.5 cm lytic lesion in the right proximal clavicle AND a 1.7 x 1.3 x 1.5 cm lytic lesion. I think they showed up as the FDG optake on the PET/CT scan which detects the unusual metabolic activity. The T4 lesion is rated 'mild to moderate' (SUV Max 3.6) and the one in the clavical area is "Prominent (SUV Max 5.8). The lesion on T4 is worrisome because of a fracture of a vertebra can be a big problem. Therefore, I will get a Spinal MRI early next week before deciding on the next stesps.
Already my oncologist has increased my maintenance Revlimid dose to an alternate day 25 mg. I had already stopped taking the high dose of glucosamine over a month ago after I found out that it apparently is 'contraindicated' for the myeloma patients. I was taking it for my knee pain. I am also managing my acid reflux from the biotin in the curcumin, 1500 mg tablets with a ranitidine. I hope all that helps, too.
I am not sure if I can add the Velcade (and dex) to my current therapy and essentially repeat a few cycles of the induction therapy in early 2015. I had responded to it very well and I hope it works well this time around, too. A research paper I read seemed to indicate that the lytic lesions may be reversible with RVD treatment and I hope that is the case for me, too.
I think MMFeb16,15 has had higher but stable kappa and kappa-lambda ratioL readings, even after stopping all the Revlimid maintenance. I think his PET scan was clear, too. I have been reading up on his diet and trying to follow it. Most of the medical professionals don't seem to take that seriously, though. The glucosamine is another example; its side effect to protect the myeloma cells from the treatment is not well understood or reported in any pharmacy database.
-
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
End of Revlimid Maintenance:
I started my myeloma journey in late 2014 and had a great response to the induction therapy with Revlimid, Velcade, and dexamethasone. I had a complete response with my kappa dropping to 12.5 mg/L and the kappa-lambda ratio near 1.0 by the end of August 2015, and both stayed at their respective levels for a couple of months. My Velcade shots were stopped and the dex was dropped soon after.
My kappa and kappa/lambda rose slowly but seemed stable throughout 2018, with the kappa stable around 70 mg/L and the kappa-lambda ratio around 2.0. Something seemed to have changed at the beginning of this year, though. The kappa steadily rising to 147 mg/L and the kappa-lambda ratio at 4.63! The graph of K/L shows an abrupt and steady rise for about 5 cycles and steeper rise for the last 4 cycles.
More worrisome are the newly detected couple of sizable lesions that have developed since my October 2018 skeletal survey by x-ray. I would have thought that my kappa and K/L levels were not in a danger zone, yet.
My oncologist reviewed the PET scan and MRI results during the first week of September and advised me that I was not responding to the Revlimid any more. He showed me that the lesion on my vertebra, as shown by the MRI, is/was quite faint. I guess the focused lesion in the rght clavicle is isolated and that bone is in no imminent danger of any fracture.
I was immediately put on the Darzalex (daratumubab) with Velcade and dexamethasone.
This was a big surprise to me. I had been reading Ron Harvot's accounts and I had jut assumed that the Velcade and dex will be added back to my Revlimid and essentially I would be repeating the induction therapy or be on an enhanced therapy with some dex and / or Velcade.
It took 2 more weeks to get the Infusions scheduled and I got started in mid September, on this new path.
I plan to post my experience on a new thread. I decided against replying to the other threads and posts on this topic but to start with My Darzalex Treatment with the first 8 weeks of my own journey, instead. Hopefully, some other patients will find these notes to be a (I'll try to make it concise) guide in the future. Suffice it to say that it is no picnic but this treatment should be manageable for most.
I started my myeloma journey in late 2014 and had a great response to the induction therapy with Revlimid, Velcade, and dexamethasone. I had a complete response with my kappa dropping to 12.5 mg/L and the kappa-lambda ratio near 1.0 by the end of August 2015, and both stayed at their respective levels for a couple of months. My Velcade shots were stopped and the dex was dropped soon after.
My kappa and kappa/lambda rose slowly but seemed stable throughout 2018, with the kappa stable around 70 mg/L and the kappa-lambda ratio around 2.0. Something seemed to have changed at the beginning of this year, though. The kappa steadily rising to 147 mg/L and the kappa-lambda ratio at 4.63! The graph of K/L shows an abrupt and steady rise for about 5 cycles and steeper rise for the last 4 cycles.
More worrisome are the newly detected couple of sizable lesions that have developed since my October 2018 skeletal survey by x-ray. I would have thought that my kappa and K/L levels were not in a danger zone, yet.
My oncologist reviewed the PET scan and MRI results during the first week of September and advised me that I was not responding to the Revlimid any more. He showed me that the lesion on my vertebra, as shown by the MRI, is/was quite faint. I guess the focused lesion in the rght clavicle is isolated and that bone is in no imminent danger of any fracture.
I was immediately put on the Darzalex (daratumubab) with Velcade and dexamethasone.
This was a big surprise to me. I had been reading Ron Harvot's accounts and I had jut assumed that the Velcade and dex will be added back to my Revlimid and essentially I would be repeating the induction therapy or be on an enhanced therapy with some dex and / or Velcade.
It took 2 more weeks to get the Infusions scheduled and I got started in mid September, on this new path.
I plan to post my experience on a new thread. I decided against replying to the other threads and posts on this topic but to start with My Darzalex Treatment with the first 8 weeks of my own journey, instead. Hopefully, some other patients will find these notes to be a (I'll try to make it concise) guide in the future. Suffice it to say that it is no picnic but this treatment should be manageable for most.
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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
Thanks for sharing your Darzalex-Velcade-dex journey, K_Shash. The fact that your Revlimid maintenance no longer worked for you is unfortunate, though. I went off myeloma treatment last January since I didn't want the Revlimid to become ineffective, ahead of taking it with Darzalex. I was taking a chance there though, that the cancer might flare up on me. I am sure many readers will want to follow your Darzalex-Vd updates. Best of luck with the regimen!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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