I was pleased to be told this week during my eight-hour visit to the hematology department that from March 2020 I would no longer require weekly hospital visits, but that the Darzalex would now be given once each month at the hospital and with a continued weekly injection of Velcade at home together with the dexamethasone. Weekly blood tests will continue alternating between a full blood test every two weeks including the electrophoresis, and a basic blood test on the other weeks, enabling us to monitor the all-important hemoglobin which has given me various problems including severe breathlessness.
I will make a brief mention of the hemoglobin level, which is hovering around the 10 g/dL level, for this, I receive injections of Binocrit (epoetin alfa) 30 000 IU in an effort to increase the level to 12 g/dL. This has only been marginally successful. This week the hospital gave me an IV injection of a hemoglobin boosting product, approximately 500 m. Unfortunately, I am unable to give you the name because there was only a handwritten label on the IV sack. I can say that I felt a considerable improvement some hours after receiving this treatment. I hope it continues.
On the electrophoresis, the monoclonal peak has further reduced from 3.5 g/L (0.35 g/dL) to 2.4 g/L (0.24 g/dL). As a matter of interest, the same figure stood at 24 g/L (2.4 g/dL) in April of 2016.
I believe that the project now is to keep the monoclonal peak as low as possible using regular monitoring and with the use of the Darzalex, Velcade, and dexamethasone.
Best Wishes to you all,
Victor L.
Forums
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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: Darzalex, Velcade & dexamethasone treatment.
This month my treatment with Darzalex, Velcade, and dexamethasone has come to an end. My last blood test was showing a small increase in the myeloma numbers, but more importantly, I have been experiencing side effects from all three drugs.
As of April 2020 my myeloma specialist has returned me to my original treatment which I had following my diagnosis in 2012: Revlimid 20 mg once per day. I will not know how it is working until May, I will then be pleased to pass on the information via the forum.
Victor L
As of April 2020 my myeloma specialist has returned me to my original treatment which I had following my diagnosis in 2012: Revlimid 20 mg once per day. I will not know how it is working until May, I will then be pleased to pass on the information via the forum.
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: Darzalex, Velcade & dexamethasone treatment.
Sorry to hear about the negative side effects causing you to discontinue the Darzalex-Velcade-dex protocol.
Hopefully they will get it right for you. The use of multiple drugs in combination affects everyone differently. You just don't know until you are on them.
Good luck
Ron
Hopefully they will get it right for you. The use of multiple drugs in combination affects everyone differently. You just don't know until you are on them.
Good luck
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Darzalex, Velcade & dexamethasone treatment.
Thank you, Ron, for your kind thoughts.
I have had a number of treatments over the past nine years, some of which produced good results but sometimes with side effects which made the normal life routine a little difficult. Many of us try to fight these side effects by forcing ourselves to perform our normal routines and functions, walking, driving, working. We refuse to give into side effects, whereas if we adapt to the illness and the side effects, life can become more peaceful and relaxed.
There is nothing wrong with putting your feet up and allowing the body to process these powerful cancer-fighting drugs. Many people can feel quite well during and after a few hours in bed. After all, hospitals generally insist on their patients staying in bed!
Best Wishes from Victor L
I have had a number of treatments over the past nine years, some of which produced good results but sometimes with side effects which made the normal life routine a little difficult. Many of us try to fight these side effects by forcing ourselves to perform our normal routines and functions, walking, driving, working. We refuse to give into side effects, whereas if we adapt to the illness and the side effects, life can become more peaceful and relaxed.
There is nothing wrong with putting your feet up and allowing the body to process these powerful cancer-fighting drugs. Many people can feel quite well during and after a few hours in bed. After all, hospitals generally insist on their patients staying in bed!
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: Darzalex, Velcade & dexamethasone treatment.
Hello Victor,
I hope that the return to taking Revlimid is helping you with the myeloma.
Best wishes,
Nancy
I hope that the return to taking Revlimid is helping you with the myeloma.
Best wishes,
Nancy
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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
Re: Darzalex, Velcade & dexamethasone treatment.
Hello Nancy and all 'Myeloma Friends,'
I have been on Revlimid 25 mg for several months now. My twice-per-month serum protein electrophoresis (SPEP) tests are showing a small increase each month, currently 5.4 g/L (0.54 g/dL), this compares with 3.5 g/L (0.35 g/dL) two months ago. I would imagine that this is to be expected as I approach nine years of treatment. Back then I was diagnosed at Stage 3 and I had been unwell since 2008.
My hematologist has suggested a change of treatment at the next visit, the beginning of August.
Best wishes to you all,
Victor L.
I have been on Revlimid 25 mg for several months now. My twice-per-month serum protein electrophoresis (SPEP) tests are showing a small increase each month, currently 5.4 g/L (0.54 g/dL), this compares with 3.5 g/L (0.35 g/dL) two months ago. I would imagine that this is to be expected as I approach nine years of treatment. Back then I was diagnosed at Stage 3 and I had been unwell since 2008.
My hematologist has suggested a change of treatment at the next visit, the beginning of August.
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: Darzalex, Velcade & dexamethasone treatment.
Hi Victor,
I hope that the change in treatment helps to bring the myeloma markers down. A slow increase hopefully won't make you any sicker though. I have been through those sorts of relapses more than once also.
Best regards,
Nancy
I hope that the change in treatment helps to bring the myeloma markers down. A slow increase hopefully won't make you any sicker though. I have been through those sorts of relapses more than once also.
Best regards,
Nancy
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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
Re: Darzalex, Velcade & dexamethasone treatment.
Update on My Myeloma Treatment - September 2020
Over the past few months, I have had mixed results for my myeloma treatment, Yesterday (Sep 16, 2020) my treatment team has started me on a new regimen which I hope may produce good results;
Kyprolis (carfilzomib) - 40 mg infusion twice per week in the "day ward"
Pomalyst (pomalidomide, Imnovid) - 20 mg to be taken at home for 21 days out of 28
Dexamethasone - 20 mg capsule once per week
I propose to start a new thread which will report on how things go on this new treatment regimen.
Kind Regards to you all,
Victor L
Over the past few months, I have had mixed results for my myeloma treatment, Yesterday (Sep 16, 2020) my treatment team has started me on a new regimen which I hope may produce good results;
Kyprolis (carfilzomib) - 40 mg infusion twice per week in the "day ward"
Pomalyst (pomalidomide, Imnovid) - 20 mg to be taken at home for 21 days out of 28
Dexamethasone - 20 mg capsule once per week
I propose to start a new thread which will report on how things go on this new treatment regimen.
Kind Regards 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: Darzalex, Velcade & dexamethasone treatment.
Victor,
I'm excited to follow your new adventure!
Two infusions per week are not so great, but good results will be worth the trouble.
Good luck to you!
By the way, Victor, I get a kick out your avatar every time you post!
I'm excited to follow your new adventure!
Two infusions per week are not so great, but good results will be worth the trouble.
Good luck to you!
By the way, Victor, I get a kick out your avatar every time you post!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Darzalex, Velcade & dexamethasone treatment.
Hello to all who have been following my journey.
Currently I am on no treatment and my myeloma numbers have fallen. A week ago I had a small basal cell carcinoma removed from my neck under local anaesthetic, quite painless.The young surgeon said that she removes many such tumors and that they are a common and easily cured side effect for people receiving cancer treatment. The previous week I had the bone marrow biopsy, rather a painful test and I am awaiting the results.
Please note that my story is now continuing in the thread titled "Kyprolis, Pomalyst & dexamethasone treatment."
Kindest Regards to all,
Victor L.
Currently I am on no treatment and my myeloma numbers have fallen. A week ago I had a small basal cell carcinoma removed from my neck under local anaesthetic, quite painless.The young surgeon said that she removes many such tumors and that they are a common and easily cured side effect for people receiving cancer treatment. The previous week I had the bone marrow biopsy, rather a painful test and I am awaiting the results.
Please note that my story is now continuing in the thread titled "Kyprolis, Pomalyst & dexamethasone treatment."
Kindest 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
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