Happy Father's Day.
I hope my son and I have a good round of golf tomorrow, here near the San Francisco airport.
I wanted to share my new discovery buried in the "Medication Guide" that accompanied my latest shipment of Revlimid. Simply put, it warns:
"Blood Clots: Blood clots in the arteries, veins and lungs can happen more often in people who take Revlimid. This risk is even higher for people with multiple myeloma who take the medicine dexamethasone with Revlimid. Heart attacks and strokes also happen more often in people who take Revlimid with dexamethasone. To reduce this increased risk, most people who take Revlimid will also take a blood thinner medicine. Certain other medicines can also increase your risk for blood clots."
Mike, I am sure this problem and the other side effects of dex are the reason our oncologists and almost half of the other myeloma experts seem to be reluctant to use dex as an 'effectiveness booster' to the Revlimid for the long-term maintenance.
Forums
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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:
My last Revlimid and dexamethasone of twelfth cycle ended on April 24th. Side effects were extreme as cycle ascended. Twelfth cycle was worst. Some new side effects appeared such as my palm getting completely black and also sole of my feet. "Foggy Brain" described by others was at extreme as well.
My readings were as follows:
After 11th cycle:
KFLC, S 6.94. mg/dl; K/L ratio 1.84; M spike 0.36 g/dl
After 12th cycle:
KFLC,S 4.94 mg/dl; K/L ratio 1.70; M spike 0.34 g/dl
After a month without chemo (Revlimid plus dex) on May 28th:
KFLC,S 3.46 mg/dl; K/L ratio 1.80; M spike 0.25 g/dl
I am almost side effect free. "Foggy brain" was first to go. Bloating still continues. Last chemo date was April 24.
My overseas hematologist has suggested to take Velcade to bring M spike to zero, but I declined as he also said that there is no guarantee that it will do so.
I am hesitant to go for maintenance chemo as I do not like to go for the side effect I experienced. Also, not until I see any of the above parameters rising upward. My hematologist in traveling location is suggesting for PET/CT scan and bone marrow biopsy to recommend maintenance dose. I don't understand the need. I will get blood test done for above parameters every month.
That is my current thinking. If you have any comment or suggestion, please let me know.
My last Revlimid and dexamethasone of twelfth cycle ended on April 24th. Side effects were extreme as cycle ascended. Twelfth cycle was worst. Some new side effects appeared such as my palm getting completely black and also sole of my feet. "Foggy Brain" described by others was at extreme as well.
My readings were as follows:
After 11th cycle:
KFLC, S 6.94. mg/dl; K/L ratio 1.84; M spike 0.36 g/dl
After 12th cycle:
KFLC,S 4.94 mg/dl; K/L ratio 1.70; M spike 0.34 g/dl
After a month without chemo (Revlimid plus dex) on May 28th:
KFLC,S 3.46 mg/dl; K/L ratio 1.80; M spike 0.25 g/dl
I am almost side effect free. "Foggy brain" was first to go. Bloating still continues. Last chemo date was April 24.
My overseas hematologist has suggested to take Velcade to bring M spike to zero, but I declined as he also said that there is no guarantee that it will do so.
I am hesitant to go for maintenance chemo as I do not like to go for the side effect I experienced. Also, not until I see any of the above parameters rising upward. My hematologist in traveling location is suggesting for PET/CT scan and bone marrow biopsy to recommend maintenance dose. I don't understand the need. I will get blood test done for above parameters every month.
That is my current thinking. If you have any comment or suggestion, please let me know.
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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 can relate to the cumulative side effects you endured all the way till the end of the 12th cycle. I had just about no fatigue for the first 4 or 5 cycles, except for the high and low feelings for a day or two caused by only a 20 mg weekly dex. But by the end of the 7th or the 8th cycle, I had the week-long fatigue and I got exhausted with the least bit of exertion.
It's great that your kappa and kappa / lambda ratio are doing well AFTER taking a break from the chemo. It would seem that your immune system was getting suppressed by the continuing cycles of the chemo and its side effects piling on. I wish you a long Revlimid-free / drug-free time and you would have plenty of time to plan the 'maintenance", if and when necessary. I do not want any biopsy or any scans, either, as my oncologist seems to be fine with the monthly tests monitoring my kappa and kappa / lambda ratio.
I had a great Father's Day, played a round of golf with my son (a tradition he has established ever since I started playing golf in 2005). For some reason I am feeling a lot more energetic this morning and I am ready to play golf again tomorrow. I was able to do all my stretches and some squats, too. I may try some push ups soon after the golf tomorrow. This may be due to the month-long cycle of the alternate day 20 mg Revlimid. I think I felt better like this back when I was on 15 mg alternate day Revlimid, too. Somehow, the 3 weeks on and 1 week off of the smaller 10 mg dose may have been making me more tired.
Your kappa and kappa / lambda ratio are very similar to mine (3.82 mg/dL or 38.2 mg/L and ratio=1.7, respectively) and I closely follow the details of your treatment progress and the side effects you are experiencing. Thanks for posting this information.
I can relate to the cumulative side effects you endured all the way till the end of the 12th cycle. I had just about no fatigue for the first 4 or 5 cycles, except for the high and low feelings for a day or two caused by only a 20 mg weekly dex. But by the end of the 7th or the 8th cycle, I had the week-long fatigue and I got exhausted with the least bit of exertion.
It's great that your kappa and kappa / lambda ratio are doing well AFTER taking a break from the chemo. It would seem that your immune system was getting suppressed by the continuing cycles of the chemo and its side effects piling on. I wish you a long Revlimid-free / drug-free time and you would have plenty of time to plan the 'maintenance", if and when necessary. I do not want any biopsy or any scans, either, as my oncologist seems to be fine with the monthly tests monitoring my kappa and kappa / lambda ratio.
I had a great Father's Day, played a round of golf with my son (a tradition he has established ever since I started playing golf in 2005). For some reason I am feeling a lot more energetic this morning and I am ready to play golf again tomorrow. I was able to do all my stretches and some squats, too. I may try some push ups soon after the golf tomorrow. This may be due to the month-long cycle of the alternate day 20 mg Revlimid. I think I felt better like this back when I was on 15 mg alternate day Revlimid, too. Somehow, the 3 weeks on and 1 week off of the smaller 10 mg dose may have been making me more tired.
Your kappa and kappa / lambda ratio are very similar to mine (3.82 mg/dL or 38.2 mg/L and ratio=1.7, respectively) and I closely follow the details of your treatment progress and the side effects you are experiencing. Thanks for posting this information.
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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 for your response and suggestions. Tomorrow I will have my monthly blood test in my overseas traveling location. Also I am meeting my hematologist. I will keep you updated.
I feel mush better. I recently have been walking almost five miles a day, with rest at a mile interval.
Thank you
Thank you for your response and suggestions. Tomorrow I will have my monthly blood test in my overseas traveling location. Also I am meeting my hematologist. I will keep you updated.
I feel mush better. I recently have been walking almost five miles a day, with rest at a mile interval.
Thank you
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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 result of June 24 yesterday. This time I did not get blood test for light chain. It was CBP, creatinine serum, calcium serum, albumin serum and SPEP. All parameters are in normal range. Hemoglobin and RBC values are first time as high as 14.4 g/dl (normal 13.0 a 18.0) and RBC 4.25 million/ ul (normal 4.2-6.5).
My M-spike has gone up from 0.25 to 0.30 g/dl. Should I worry? This is after two months of no Revlimid plus dex regimen.
My hematologist at the traveling location suggested I take Zometa every month rather than once in three months.
Thank you, K_Shash.
I got my blood test result of June 24 yesterday. This time I did not get blood test for light chain. It was CBP, creatinine serum, calcium serum, albumin serum and SPEP. All parameters are in normal range. Hemoglobin and RBC values are first time as high as 14.4 g/dl (normal 13.0 a 18.0) and RBC 4.25 million/ ul (normal 4.2-6.5).
My M-spike has gone up from 0.25 to 0.30 g/dl. Should I worry? This is after two months of no Revlimid plus dex regimen.
My hematologist at the traveling location suggested I take Zometa every month rather than once in three months.
Thank you, 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
Hi MMFeb16,15,
I don't think that the M-spike indicates a significant rise. However, of course, check with your doctor. As far as the Zometa is concerned, there is a lot of variation on that one. Do you have bony disease, with fractures? That may be a factor in the monthly Zometa recommendation.
I am scheduled for Zometa every 3 months.
Good luck!
Ellen Harris
I don't think that the M-spike indicates a significant rise. However, of course, check with your doctor. As far as the Zometa is concerned, there is a lot of variation on that one. Do you have bony disease, with fractures? That may be a factor in the monthly Zometa recommendation.
I am scheduled for Zometa every 3 months.
Good luck!
Ellen Harris
Re: Induction therapy to maintenance therapy - a transition
Hello Ellen and mmFeb16,15,
Zometa:
I wanted to mention that I have not had any Zometa shots at all. My oncologist had left it to me from the very beginning (December 2014) and, as I recall, he did not think that I needed these shots based on the bone lesions shown on my x-rays. He had cleared me to continue to play golf based on the same x-rays that did not show any 'rings' around any long bones – i.e., the arm or leg bones. I had a lot of muscle and joint pains around December 2015 and it was over a year from the initial x-rays. Therefore, he ordered a whole new set of x-rays and advised me that they did not show anything to worry about.
The comments from both of you make me wonder if Zometa prescribed as a 'standard of care" or only on 'as needed' basis. When would I / may I need them?
Fatigue:
Lately, I have had no such pulled muscles or joint pains. However, this 20 mg alternate day Revlimid may be causing a much reduced threshold for exhaustion and fatigue. I feel breathless if I walk up a steep hill, try to jog, or even just walk at a medium pace. The breathlessness is almost immediate, but I can walk for miles at a slow pace. I also found out that playing 2 rounds of golf in a week is very exhausting after the second round. I felt just tired and lethargic for 3 or 4 days! No aches or pains, just like when one is recovering from a flu. And during the few days after the second round of golf, I was completely exhausted after a walk up a couple of steep blocks and a hearty meal; so much so that I had to take a nap and did not feel like getting up for a couple of hours. Generally I never had to lie down during the day like that before this myeloma treatment. Fortunately, this 2-hour tiredness is nothing like the 'crash' I used to feel after the 'high' of the dex. Initially that 'crash' lasted for only a day or two, but it was almost continuous towards the end of my Induction phase.
mmFeb16,15 – I think you had mentioned that you walk for 5 miles, resting after each mile. Did you experience any such 'long lasting' tiredness?
Zometa:
I wanted to mention that I have not had any Zometa shots at all. My oncologist had left it to me from the very beginning (December 2014) and, as I recall, he did not think that I needed these shots based on the bone lesions shown on my x-rays. He had cleared me to continue to play golf based on the same x-rays that did not show any 'rings' around any long bones – i.e., the arm or leg bones. I had a lot of muscle and joint pains around December 2015 and it was over a year from the initial x-rays. Therefore, he ordered a whole new set of x-rays and advised me that they did not show anything to worry about.
The comments from both of you make me wonder if Zometa prescribed as a 'standard of care" or only on 'as needed' basis. When would I / may I need them?
Fatigue:
Lately, I have had no such pulled muscles or joint pains. However, this 20 mg alternate day Revlimid may be causing a much reduced threshold for exhaustion and fatigue. I feel breathless if I walk up a steep hill, try to jog, or even just walk at a medium pace. The breathlessness is almost immediate, but I can walk for miles at a slow pace. I also found out that playing 2 rounds of golf in a week is very exhausting after the second round. I felt just tired and lethargic for 3 or 4 days! No aches or pains, just like when one is recovering from a flu. And during the few days after the second round of golf, I was completely exhausted after a walk up a couple of steep blocks and a hearty meal; so much so that I had to take a nap and did not feel like getting up for a couple of hours. Generally I never had to lie down during the day like that before this myeloma treatment. Fortunately, this 2-hour tiredness is nothing like the 'crash' I used to feel after the 'high' of the dex. Initially that 'crash' lasted for only a day or two, but it was almost continuous towards the end of my Induction phase.
mmFeb16,15 – I think you had mentioned that you walk for 5 miles, resting after each mile. Did you experience any such 'long lasting' tiredness?
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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 Ellen and K_Shash:
Thank you. Ellen. I will check with my hematologist about my M-spike rise from 0.25 to 0.30.
Zometa:
This is what I found in the drug's prescribing information:
Indications And Usage
Hypercalcemia of Malignancy - Zometa is indicated for the treatment of hypercalcemia of malignancy defined as an albumin-corrected calcium (cCa) of greater than or equal to 12 mg/dL [3.0 mmol/L] using the formula: cCa in mg/dL=Ca in mg/dL + 0.8 (4.0 g/dL - patient albumin [g/dL]).
Multiple Myeloma and Bone Metastases of Solid Tumors - Zometa is indicated for the treatment of patients with multiple myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard antineoplastic therapy. Prostate cancer should have progressed after treatment with at least one hormonal therapy.
Important Limitation of Use - The safety and efficacy of Zometa in the treatment of hypercalcemia associated with hyperparathyroidism or with other nontumor-related conditions have not been established.
Mechanism of Action
The principal pharmacologic action of zoledronic acid is inhibition of bone resorption. Although the antiresorptive mechanism is not completely understood, several factors are thought to contribute to this action. In vitro, zoledronic acid inhibits osteoclastic activity and induces osteoclast apoptosis. Zoledronic acid also blocks the osteoclastic resorption of mineralized bone and cartilage through its binding to bone. Zoledronic acid inhibits the increased osteoclastic activity and skeletal calcium release induced by various stimulatory factors released by tumors.
In my case with more than fifty x-rays, three times at six month intervals, no bone damage could be observed, but with PET/CT scan, I was observed to have three lytic lesions less than 0.25 cm each on my lower spine.
Fatigue:
Dear K_Shash: Since I left Revlimid plus dex two months ago, I do not have any kind of fatigue. I take rest after a mile walk, or sometime less than that as my calf and knee joints start being painful. After five minutes or so I walk again.
Thank you, Ellen and K_ Shash.
Thank you. Ellen. I will check with my hematologist about my M-spike rise from 0.25 to 0.30.
Zometa:
This is what I found in the drug's prescribing information:
Indications And Usage
Hypercalcemia of Malignancy - Zometa is indicated for the treatment of hypercalcemia of malignancy defined as an albumin-corrected calcium (cCa) of greater than or equal to 12 mg/dL [3.0 mmol/L] using the formula: cCa in mg/dL=Ca in mg/dL + 0.8 (4.0 g/dL - patient albumin [g/dL]).
Multiple Myeloma and Bone Metastases of Solid Tumors - Zometa is indicated for the treatment of patients with multiple myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard antineoplastic therapy. Prostate cancer should have progressed after treatment with at least one hormonal therapy.
Important Limitation of Use - The safety and efficacy of Zometa in the treatment of hypercalcemia associated with hyperparathyroidism or with other nontumor-related conditions have not been established.
Mechanism of Action
The principal pharmacologic action of zoledronic acid is inhibition of bone resorption. Although the antiresorptive mechanism is not completely understood, several factors are thought to contribute to this action. In vitro, zoledronic acid inhibits osteoclastic activity and induces osteoclast apoptosis. Zoledronic acid also blocks the osteoclastic resorption of mineralized bone and cartilage through its binding to bone. Zoledronic acid inhibits the increased osteoclastic activity and skeletal calcium release induced by various stimulatory factors released by tumors.
In my case with more than fifty x-rays, three times at six month intervals, no bone damage could be observed, but with PET/CT scan, I was observed to have three lytic lesions less than 0.25 cm each on my lower spine.
Fatigue:
Dear K_Shash: Since I left Revlimid plus dex two months ago, I do not have any kind of fatigue. I take rest after a mile walk, or sometime less than that as my calf and knee joints start being painful. After five minutes or so I walk again.
Thank you, Ellen and 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
Thanks, MMFeb16,15.
I believe the bone lesions shown by my x-rays were not significant enough and my oncologist did not say I needed Zometa, even as he advised me that I do not have to worry about any bone damage while playing golf. He did order another set of whole body x-rays when I was experiencing unusual joint and muscle pain and he stated that it was about time since a whole year had passed since the last batch was ordered. He advised me that there was no significant change in the latter set.
You mentioned that you have not had any fatigue since you stopped taking Revlimid and dex. You may have stated this before, but what was your experience (fatigue level) while you were taking the dex and Revlimid?
I believe the bone lesions shown by my x-rays were not significant enough and my oncologist did not say I needed Zometa, even as he advised me that I do not have to worry about any bone damage while playing golf. He did order another set of whole body x-rays when I was experiencing unusual joint and muscle pain and he stated that it was about time since a whole year had passed since the last batch was ordered. He advised me that there was no significant change in the latter set.
You mentioned that you have not had any fatigue since you stopped taking Revlimid and dex. You may have stated this before, but what was your experience (fatigue level) while you were taking the dex and Revlimid?
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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
July 2016 update:
I repeated my blood tests on Tuesday and the results show that my kappa free light chain level has bounced up to 42.4 mg/L from June's 38.2, near the May 2016 level of 42.6. However, the kappa / lambda ratio has dropped to 1.6 from 1.7 and is now within the normal range. I think these results indicate that 'all is stable'.
After some discussion here and also based on the article mikeb had referred me to, my oncologist has recommended that my Revlimid dose remains unchanged and no dex is needed.
My stamina is noticeably reduced; I feel exhausted for a few days if I take mile-long brisk walks for a couple of days in a row, or if I play a couple of rounds of golf in a week. This exhaustion seems to set in like a delayed reaction, the day after the second round of golf or on the day after the 2 days' walking a mile. I do feel immediate breathlessness, however, if I try to jog or walk up a moderately steep hill. I think I was doing a lot better when I was on the alternate day 15 mg Revlimid dose (vs. the current 20 mg alternate day). Does anybody have any experience or suggestions about improving the stamina level under such circumstances? The usual advice I get is 'live within the new limits'.
Overall, I am able to lead a 'normal' life, though. I just repeated my lipid panel and my cholesterol levels have remained unchanged, 6 months after stopping Lipitor (atorvastatin). Stopping the Lipitor has been the single most helpful step in the recent months because that has just about completely cured my shoulder pain and upper body soreness.
I repeated my blood tests on Tuesday and the results show that my kappa free light chain level has bounced up to 42.4 mg/L from June's 38.2, near the May 2016 level of 42.6. However, the kappa / lambda ratio has dropped to 1.6 from 1.7 and is now within the normal range. I think these results indicate that 'all is stable'.
After some discussion here and also based on the article mikeb had referred me to, my oncologist has recommended that my Revlimid dose remains unchanged and no dex is needed.
My stamina is noticeably reduced; I feel exhausted for a few days if I take mile-long brisk walks for a couple of days in a row, or if I play a couple of rounds of golf in a week. This exhaustion seems to set in like a delayed reaction, the day after the second round of golf or on the day after the 2 days' walking a mile. I do feel immediate breathlessness, however, if I try to jog or walk up a moderately steep hill. I think I was doing a lot better when I was on the alternate day 15 mg Revlimid dose (vs. the current 20 mg alternate day). Does anybody have any experience or suggestions about improving the stamina level under such circumstances? The usual advice I get is 'live within the new limits'.
Overall, I am able to lead a 'normal' life, though. I just repeated my lipid panel and my cholesterol levels have remained unchanged, 6 months after stopping Lipitor (atorvastatin). Stopping the Lipitor has been the single most helpful step in the recent months because that has just about completely cured my shoulder pain and upper body soreness.
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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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