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Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thanks for the update Victor. I've been following this thread closely, and I am happy that your side effects from Pomalyst (with dex and cyclophosphamide) have been tolerable.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Changing to Maintenance Phase
Hello,
Today I have had my monthly appointment following the nine months of treatment. The overall response is partial but satisfactory with the M-spike remaining stable at 0.6 g/dL. The maintenance phase will commence in two weeks time and will consist of continuing Pomalyst (pomalidomide) 4 mg for 21 days out of 28 together with a single tablet of dexamethasone 20 mg every seven days. The Endoxan (cyclophosphamide) will be discontinued as of next week. I will continue daily Innohep (tinzaparin) injections until further notice and Zometa every three months. My hospital appointments will also be every three months instead of monthly, if there are no problems.
Thank you, Little Monkey, for your message, I will keep you informed of developments.
Best wishes from Victor L
Hello,
Today I have had my monthly appointment following the nine months of treatment. The overall response is partial but satisfactory with the M-spike remaining stable at 0.6 g/dL. The maintenance phase will commence in two weeks time and will consist of continuing Pomalyst (pomalidomide) 4 mg for 21 days out of 28 together with a single tablet of dexamethasone 20 mg every seven days. The Endoxan (cyclophosphamide) will be discontinued as of next week. I will continue daily Innohep (tinzaparin) injections until further notice and Zometa every three months. My hospital appointments will also be every three months instead of monthly, if there are no problems.
Thank you, Little Monkey, for your message, I will keep you informed of developments.
Best wishes from Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Maintenance Phase; First Five Weeks
Hello,
I have received today my blood test results for five weeks of maintenance treatment, Pomalyst / Imnovid (pomalidomide) 4 mg, 21 days per month and dexamethasone 20 mg once per week. The test has shown a stabile M-Spike of 0.68 g/dL with the other electrophoresis items returning to normal range figures.
The rest of this large monthly blood test is normal apart from the red blood cells, which are slightly in the anemic range, where they have been for several months, but these figures too are improving every week on the small blood tests since stopping the cyclophosphamide, I must add that since taking the last dose of this strong drug in March, my quality of life has improved very much.
Very best wishes to you all,
Victor L
Hello,
I have received today my blood test results for five weeks of maintenance treatment, Pomalyst / Imnovid (pomalidomide) 4 mg, 21 days per month and dexamethasone 20 mg once per week. The test has shown a stabile M-Spike of 0.68 g/dL with the other electrophoresis items returning to normal range figures.
The rest of this large monthly blood test is normal apart from the red blood cells, which are slightly in the anemic range, where they have been for several months, but these figures too are improving every week on the small blood tests since stopping the cyclophosphamide, I must add that since taking the last dose of this strong drug in March, my quality of life has improved very much.
Very best wishes to you all,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you Victor for describing your journey in so much detail. The thread string is wildly informative – both your posts and the conversation it prompts with other readers. I am most appreciative for the information and education. Thank you, thank you.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hello Wholenetherworld,
Thank you for your kind message, I am so pleased my posts have been of value to you and your husband, I hope that all goes well for both of you.
Kind Regards,
Victor L
Thank you for your kind message, I am so pleased my posts have been of value to you and your husband, I hope that all goes well for both of you.
Kind Regards,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Now approaching one year of treatment .
I am grateful that when I look back over my charts covering the period from October 2015, when the current relapse was first detected, until now, I have some optimism that this treatment has been well worth the effort.
Although today's blood test results show a very slight upward movement of the M-Spike, I do not think that my hematologist will consider any modification of the treatment at this stage. Last month the figure was 0.68 g/dL and this month it has touched 0.70 g/dL.
However, comparing these figures to where I was during the summer of 2016 gives me some additional optimism. Back then I had figures showing the M-spike at 1.07 g/dL and that was when I was taking cyclophosphamide every week, which was having a very negative effect on my quality of life. By comparison, the regimen of Pomalyst for 21 days per month and dexamethasone 20 mg once per week can be considered quite a light and easily tolerated treatment which enables a good quality of life. Three weeks ago I was able to do a three thousand kilometer drive to visit my family in the UK and, on returning home, I was surprised that I did not feel any significant tiredness despite driving for ten hours on the autoroutes of France.
My only additional medication since last time has been Folinoral (calcium folinate) 25 mg once per week. This is a calcium supplement to help reduce some symptoms of cramp.
Best Wishes to you all
Victor L
I am grateful that when I look back over my charts covering the period from October 2015, when the current relapse was first detected, until now, I have some optimism that this treatment has been well worth the effort.
Although today's blood test results show a very slight upward movement of the M-Spike, I do not think that my hematologist will consider any modification of the treatment at this stage. Last month the figure was 0.68 g/dL and this month it has touched 0.70 g/dL.
However, comparing these figures to where I was during the summer of 2016 gives me some additional optimism. Back then I had figures showing the M-spike at 1.07 g/dL and that was when I was taking cyclophosphamide every week, which was having a very negative effect on my quality of life. By comparison, the regimen of Pomalyst for 21 days per month and dexamethasone 20 mg once per week can be considered quite a light and easily tolerated treatment which enables a good quality of life. Three weeks ago I was able to do a three thousand kilometer drive to visit my family in the UK and, on returning home, I was surprised that I did not feel any significant tiredness despite driving for ten hours on the autoroutes of France.
My only additional medication since last time has been Folinoral (calcium folinate) 25 mg once per week. This is a calcium supplement to help reduce some symptoms of cramp.
Best Wishes to you all
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Completion of One Year of Treatment (20 months since start of relapse)
The electrophoresis test results for June 2017 have shown a very welcome 20% reduction in the monoclonal peak; 5.4 grams/ litre (0.54g/dL) compared with 7.0 grams/litre (0.70 g/dL) in May 2017.
All other figures are within limits.
Although it has been discussed by others, I would like to emphasize the importance of timing blood tests correctly if you are taking dexamethasone. Dex can effect the blood sugar level and give a result indicating diabetes, this has happened to me when the blood test was performed the day after taking dex. Allowing four or five days to pass before the blood test produced a normal blood sugar level.
Best wishes to everybody,
Victor L.
The electrophoresis test results for June 2017 have shown a very welcome 20% reduction in the monoclonal peak; 5.4 grams/ litre (0.54g/dL) compared with 7.0 grams/litre (0.70 g/dL) in May 2017.
All other figures are within limits.
Although it has been discussed by others, I would like to emphasize the importance of timing blood tests correctly if you are taking dexamethasone. Dex can effect the blood sugar level and give a result indicating diabetes, this has happened to me when the blood test was performed the day after taking dex. Allowing four or five days to pass before the blood test produced a normal blood sugar level.
Best wishes to everybody,
Victor L.
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
July 2017 - Electrophoresis Results
The monoclonal peak (M-spike) has shown a further reduction this month and now stands at 4.8 g/L (0.48 g/dL). This amount is getting close to the original level for when the relapse was first detected nearly two years ago.
Kind Regards to all,
Victor L
The monoclonal peak (M-spike) has shown a further reduction this month and now stands at 4.8 g/L (0.48 g/dL). This amount is getting close to the original level for when the relapse was first detected nearly two years ago.
Kind Regards to all,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hematology Appointment - August 2017
I was very pleased with my appointment today. Five years ago I was having two hospital visits every week, now I see the hematologist every three or four months.
The last electrophoresis test showed the monoclonal peak had reduced to 4.8 g/L (0.48 g/dL) and from next week I will no longer take the dexamethasone, I will continue only with the Pomalyst 4 mg for three weeks per month. My next appointment has been arranged for December 2017.
In addition I will continue Zometa injections every three months, and I will have two blood tests per month, one large test with the electrophoresis analysis, and a small test at the two week 'half way' point, this is instead of weekly blood tests.
Finally I will receive an injection of Pneumovax in November to reduce the risk of a lung infection as experienced five years ago.
I must continue the daily injections of Innohep (tinzaparin) to improve the fluidity of my blood.
Kind Regards to all,
Victor L
I was very pleased with my appointment today. Five years ago I was having two hospital visits every week, now I see the hematologist every three or four months.
The last electrophoresis test showed the monoclonal peak had reduced to 4.8 g/L (0.48 g/dL) and from next week I will no longer take the dexamethasone, I will continue only with the Pomalyst 4 mg for three weeks per month. My next appointment has been arranged for December 2017.
In addition I will continue Zometa injections every three months, and I will have two blood tests per month, one large test with the electrophoresis analysis, and a small test at the two week 'half way' point, this is instead of weekly blood tests.
Finally I will receive an injection of Pneumovax in November to reduce the risk of a lung infection as experienced five years ago.
I must continue the daily injections of Innohep (tinzaparin) to improve the fluidity of my blood.
Kind Regards to all,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Congrats Victor.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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