I have started a four month trial of treatment using Darzalex, Velcade, and dexamethasone, all three given in the hospital "day ward." This follows an increase in my serum free light chain numbers following treatment with Pomalyst (pomalidomide, Imnovid) since 2016.
My original diagnosis was nearly eight years ago in January 2012, by which time I had Stage 3 untreated multiple myeloma. I did not have a stem cell transplant (by personal choice), and my first treatment was similar to the Darzalex, Velcade, and dex regimen except that Revlimid was the key ingredient. My first treatment regimen resulted in a three-year treatment-free period ending in 2016.
This week has been my first two-day session at the hospital and I have suffered no noticeable side effects from the three treatments which are given by intravenous injection and take about 6 hours, The only downside is that it can be rather tedious waiting on a hospital bed for all that time, with wires and tubes restricting my movement. In addition I will have a third injection each week at home, given by a visiting nurse.
Depending upon my blood test results later this month, this new treatment will continue until February 2020 and then I would expect a maintenance dose of Darzalex and dexamethasone if all goes well.
Kind Regards to 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.
Good to hear that you're not suffering any side effects other than the boredom of the infusion routine. Here's hoping this works well and provides a long remission, Victor.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Darzalex, Velcade & dexamethasone treatment.
Thank you for your kind words Mike. 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.
I have now completed the first month of treatment with Darzalex, Velcade, and dexamethasone. Side effects seem to consist mainly of a degree of muscular type pain in my arms between my shoulders and elbows, but this had existed prior to commencing the trial, but has become a little more pronounced.
I have had three electrophoresis analyses since starting Darzalex and the results seem to be centered on the long-standing monoclonal peak in the Beta 2 zone.
Prior to Darzalex but following three years of Pomalyst (pomalidomide, Imnovid) treatment, the level one month ago stood at 7.2 g/l (0.72 g/dL) or 11.1%.
Following the first treatment, the level reduced to 5.4 g/l (0.54 g/dL) or 8.4%
This week, Dec 2, 2019, the peak has reduced to 4.8 g/L (0.48 g/dL) or 7.6%
My quick calculation would suggest an overall reduction of about 32% since start of treatment.
I would note a dramatic reduction in the peripheral neuropathy.
Best Wishes to you all.
Victor L
I have had three electrophoresis analyses since starting Darzalex and the results seem to be centered on the long-standing monoclonal peak in the Beta 2 zone.
Prior to Darzalex but following three years of Pomalyst (pomalidomide, Imnovid) treatment, the level one month ago stood at 7.2 g/l (0.72 g/dL) or 11.1%.
Following the first treatment, the level reduced to 5.4 g/l (0.54 g/dL) or 8.4%
This week, Dec 2, 2019, the peak has reduced to 4.8 g/L (0.48 g/dL) or 7.6%
My quick calculation would suggest an overall reduction of about 32% since start of treatment.
I would note a dramatic reduction in the peripheral neuropathy.
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.
My progress following six weeks of Darzalex treatment
The latest blood test was on December 16, 2019. My myeloma 'peak' on the electrophoresis test was visibly smaller than last month at 4.4 g/L (0.44 g/dL), or 7.5%.
Unfortunately, the treatment is having less desirable effects on other blood test numbers. For example, my platelets had fallen dramatically to only 13,000 mm3, the 'normal' range is between 150,000 and 450,000. This largely unexpected plunge resulted in a two-hour session in hospital to receive a transfusion. My results for this week show an improvement to 109,000 mm3.
Side Effects:
During the past weeks I have experienced what I would describe as the most severe side effect since my treatment began in 2012. This can be best described as 'respiratory distress.' This first occurred whilst visiting the large hospital where I receive my treatment. We had to walk about one hundred yards from the parking area to reception very early in the morning in near-freezing temperatures. I became unable to breathe and required physical support in order to enter the warm area of the reception. During the next few days, this breathlessness attacked me on several more occasions, resulting in several hours in the emergency unit of our local hospital.
Following numerous tests, the doctors decided that this is a combination of side effects together with a severe respiratory infection, probably caused partly by my reduced level of immunity. I have received twice-daily doses of antibiotics, and also I have been provided with a Ventoline (salbutamol) inhaler, as used by asthma patients. It was emphasized that I do not have asthma, but the inhaler may prove beneficial if further breathing problems occur.
I am pleased to say that my breathing is now almost normal. However, all Darzalex treatment was suspended temporarily.
Kind Regards,
Victor L
The latest blood test was on December 16, 2019. My myeloma 'peak' on the electrophoresis test was visibly smaller than last month at 4.4 g/L (0.44 g/dL), or 7.5%.
Unfortunately, the treatment is having less desirable effects on other blood test numbers. For example, my platelets had fallen dramatically to only 13,000 mm3, the 'normal' range is between 150,000 and 450,000. This largely unexpected plunge resulted in a two-hour session in hospital to receive a transfusion. My results for this week show an improvement to 109,000 mm3.
Side Effects:
During the past weeks I have experienced what I would describe as the most severe side effect since my treatment began in 2012. This can be best described as 'respiratory distress.' This first occurred whilst visiting the large hospital where I receive my treatment. We had to walk about one hundred yards from the parking area to reception very early in the morning in near-freezing temperatures. I became unable to breathe and required physical support in order to enter the warm area of the reception. During the next few days, this breathlessness attacked me on several more occasions, resulting in several hours in the emergency unit of our local hospital.
Following numerous tests, the doctors decided that this is a combination of side effects together with a severe respiratory infection, probably caused partly by my reduced level of immunity. I have received twice-daily doses of antibiotics, and also I have been provided with a Ventoline (salbutamol) inhaler, as used by asthma patients. It was emphasized that I do not have asthma, but the inhaler may prove beneficial if further breathing problems occur.
I am pleased to say that my breathing is now almost normal. However, all Darzalex treatment was suspended temporarily.
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: Darzalex, Velcade & dexamethasone treatment.
Happy New Year 2020, Victor. I read your thread about your Darzalex, Velcade, and dexamethasone treatment. It sounds like everything was going really well until six weeks out. I am hoping that your immune system and respiratory system recovers soon and that your good results hold for you. Take good care of yourself!
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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 Victor,
I do hope you are able to resume treatment and stay strong in 2020.
Eileen
I do hope you are able to resume treatment and stay strong in 2020.
Eileen
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Darzalex, Velcade & dexamethasone treatment.
Sincere thanks, Nancy and Eileen, for your kind words and concern. I am pleased to report that I am starting to be able to make thirty-minute walks at our town lake. The breathlessness is reducing well. What a dreadful side effect that is.
If anybody is affected with breatlessness, the only rule to follow is: STOP. Do not try to hurry to safety. This makes the problem worse. It should pass within a minute or two but can be very frightening. A full heart and lung examination is advisable.
I have been cleared to go back on my full dose of Darzalex and soon will receive the Velcade at home. I am starting to feel much improved.
Kind Regards dear friends
Victor L.
(L for Laszlo, the fictional freedom fighter of 'Casablanca' fame!)
If anybody is affected with breatlessness, the only rule to follow is: STOP. Do not try to hurry to safety. This makes the problem worse. It should pass within a minute or two but can be very frightening. A full heart and lung examination is advisable.
I have been cleared to go back on my full dose of Darzalex and soon will receive the Velcade at home. I am starting to feel much improved.
Kind Regards dear friends
Victor L.
(L for Laszlo, the fictional freedom fighter of 'Casablanca' fame!)
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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.
The Continuing Problem of the Breathlessness Side Effect
Here we are in mid-January 2020 and after around two months of experiencing this most distressing of side effects, it would appear that the solution to the problem may be at hand.
My most extreme experience of the 'fish-out-of-water' syndrome occurred just one week ago when I awoke during the early hours, gasping for breath. It was impossible to do anything as I was already lying down, so I tried to calm my fears and after two or three minutes my breathing returned to normal. A few hours later the morning postal delivery arrived which, by incredible coincidence, contained an urgent hospital-issued prescription for an injection to counter low hemoglobin.
I have weekly blood tests, carried out at home by a visiting nurse. For months my hemoglobin levels have been a little below the normal parameters. 'Normal' would be between 13.0 and 18.0, but frequently my reading would be at or below 10.5.
The prescription was for an injection called (in France) Binocrit (biosimilar for Epogen / Procrit / Eprex; epoetin alfa). This would be given on a weekly basis following the normal blood test if the hemoglobin level was low. Needless to say, I obtained the product the same day and received my first injection within hours. I began to feel a real benefit by the evening and a blood test the following day showed an improvement which, although still below normal, was certainly moving in the right direction. The weekly injections will now continue until normal hemoglobin levels return and I am so pleased to feel a real improvement and so quickly.
Please be careful if you have low hemoglobin levels, the symptoms can be distressing but the solution is quickly available.
Victor L..
Here we are in mid-January 2020 and after around two months of experiencing this most distressing of side effects, it would appear that the solution to the problem may be at hand.
My most extreme experience of the 'fish-out-of-water' syndrome occurred just one week ago when I awoke during the early hours, gasping for breath. It was impossible to do anything as I was already lying down, so I tried to calm my fears and after two or three minutes my breathing returned to normal. A few hours later the morning postal delivery arrived which, by incredible coincidence, contained an urgent hospital-issued prescription for an injection to counter low hemoglobin.
I have weekly blood tests, carried out at home by a visiting nurse. For months my hemoglobin levels have been a little below the normal parameters. 'Normal' would be between 13.0 and 18.0, but frequently my reading would be at or below 10.5.
The prescription was for an injection called (in France) Binocrit (biosimilar for Epogen / Procrit / Eprex; epoetin alfa). This would be given on a weekly basis following the normal blood test if the hemoglobin level was low. Needless to say, I obtained the product the same day and received my first injection within hours. I began to feel a real benefit by the evening and a blood test the following day showed an improvement which, although still below normal, was certainly moving in the right direction. The weekly injections will now continue until normal hemoglobin levels return and I am so pleased to feel a real improvement and so quickly.
Please be careful if you have low hemoglobin levels, the symptoms can be distressing but the solution is quickly available.
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.
January 23, 2020 Update
Today I have received my electrophoresis results for January 20, 2020 and the printout appears almost normal following ten weeks of treatment. The actual figures show a near 50% reduction in the monoclonal peak since November 2019.
3.5 g/L [0.35 g/dL], or 5.9%
Tomorrow, January 24, 2020, I will receive a dose of Velcade at home together with a 20 mg capsule of dexamethasone. In addition, I am due for the now weekly injection of Binocrit (30,000) to counteract a fall in hemoglobin which causes my breathlessness.
My cardiology appointment last week was satisfactory and my daily dose of atenolol has been increased to 100 mg from 50 mg.
Kind Regards to all from Victor L.
Today I have received my electrophoresis results for January 20, 2020 and the printout appears almost normal following ten weeks of treatment. The actual figures show a near 50% reduction in the monoclonal peak since November 2019.
3.5 g/L [0.35 g/dL], or 5.9%
Tomorrow, January 24, 2020, I will receive a dose of Velcade at home together with a 20 mg capsule of dexamethasone. In addition, I am due for the now weekly injection of Binocrit (30,000) to counteract a fall in hemoglobin which causes my breathlessness.
My cardiology appointment last week was satisfactory and my daily dose of atenolol has been increased to 100 mg from 50 mg.
Kind Regards to all 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
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