Hello to all on The Myeloma Beacon and to Pepperink, many thanks for your kind remarks in my previous thread about my treatment with Darzalex, Velcade, and dexamethasone!
I do not have any actual results as yet for my progress (or lack of) with the Kyprolis, Imnovid (Pomalyst, pomalidomide), and dexamethasone, but my main reason for this update is to mention quite undesirable side effects. This started off with a very disturbed stomach which led to an incident of actually falling unconscious on the settee. My wife was so concerned that she called the emergency services. I awoke to find myself in an emergency ambulance en route to the local hospital, where I stayed for 24 hours. I am back home now having even received an MRI examination and an EEG test to eliminate any risk of epilepsy. Many questions to be answered here.
An additional concern is that a small lump on my neck, below my left ear, was biopsied a couple of weeks back. Today they informed me that the biopsy is positive and I have been booked in for total removal of the lesion on November 2 2020, under local anesthetic, and returning home an hour after.
I will keep you informed of events,
Best Wishes,
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: Kyprolis, Pomalyst & dexamethasone treatment
Hi Victor,
I'm always pleased to hear how you are progressing even though I am just watching in the background. Never doubt our interest in your experience (and those of others here). Many of us are not far behind.
I'm always pleased to hear how you are progressing even though I am just watching in the background. Never doubt our interest in your experience (and those of others here). Many of us are not far behind.
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wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Kyprolis, Pomalyst & dexamethasone treatment
Wow, that’s a lot to deal with! I hope the new drug trio is working.
David
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Kyprolis, Pomalyst & dexamethasone treatment
Hello Victor,
I'm very sorry to hear about the reaction you had to the start of the Kyprolis, Pomalyst, and dex regimen. I hope you've recovered well and that you're responding to treatment.
I really appreciate the updates you've been posting about your treatment experiences. They're very helpful.
Good luck!
I'm very sorry to hear about the reaction you had to the start of the Kyprolis, Pomalyst, and dex regimen. I hope you've recovered well and that you're responding to treatment.
I really appreciate the updates you've been posting about your treatment experiences. They're very helpful.
Good luck!
Re: Kyprolis, Pomalyst & dexamethasone treatment
Hi Victor,
I am sorry to hear that you are still experiencing falling and that the new treatments have side effects too. I hope, however, that they work against the myeloma.
It's good of you to keep us updated, and best of luck with everything.
I am sorry to hear that you are still experiencing falling and that the new treatments have side effects too. I hope, however, that they work against the myeloma.
It's good of you to keep us updated, and best of luck with everything.
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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: Kyprolis, Pomalyst & dexamethasone treatment
Greetings to you al, including of course Wenlock00, Arizonan, TerryH, and Nancy Shamanna;
At this point in time I feel I am getting to the nitty-gritty of the cause of my side-effect problems. I now feel confident that I react badly to the Imnovid (pomalidomide, Pomalyst) 4 mg and I like to share this information because I know that there are others who may experience similar problems. My hematologist has introduced me to Imnovid (Pomalyst) on and off for around three years, This has caused me to suffer quite severe digestive problems, sometimes followed by the very serious symptoms of losing consciousness.
Make no mistake, the latter (losing consciousness) is dangerous and it is listed as a known side effect. The only way in which I can cope with the two-hour car journey to the hospital this week is to suspend the treatment as of yesterday. I hope to receive my electrophoresis test results this week, which will help me to make a decision as to whether the benefits, if any, justify the difficulties. It is, for me, a particularly important time, as I am rapidly approaching nine years of treatment and close to fifteen years since the myeloma first manifested itself.
I will, as always, keep you informed of developments.
Kind Regards,
Victor L.
At this point in time I feel I am getting to the nitty-gritty of the cause of my side-effect problems. I now feel confident that I react badly to the Imnovid (pomalidomide, Pomalyst) 4 mg and I like to share this information because I know that there are others who may experience similar problems. My hematologist has introduced me to Imnovid (Pomalyst) on and off for around three years, This has caused me to suffer quite severe digestive problems, sometimes followed by the very serious symptoms of losing consciousness.
Make no mistake, the latter (losing consciousness) is dangerous and it is listed as a known side effect. The only way in which I can cope with the two-hour car journey to the hospital this week is to suspend the treatment as of yesterday. I hope to receive my electrophoresis test results this week, which will help me to make a decision as to whether the benefits, if any, justify the difficulties. It is, for me, a particularly important time, as I am rapidly approaching nine years of treatment and close to fifteen years since the myeloma first manifested itself.
I will, as always, keep you informed of developments.
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: Kyprolis, Pomalyst & dexamethasone treatment
My update for mid October:
Warmest Greetings to all of you, my friends.
Following my being hospitalized by emergency ambulance and paramedics due to what I believe to be extreme side effects of my treatment, which included Imnovid (Pomalyst, pomalidomide), I am now having blood tests at home twice per week and my myeloma treatment has been suspended for the past three weeks.
The blood test results received yesterday demonstrate an improvement in virtually all areas. I would make special mention of my hemoglobin, which had previously been at a level which required a weekly injection, at home, of Binocrit (epoetin alfa - rch) 30000 IU. My hemoglobin level has improved so that these injections are no longer necessary.
Yesterday I had my weekly visit to the hematology department of our hospital. My specialist expressed his satisfaction with my general state of health, and he showed me this week's electrophoresis results, which showed a good reduction in my monoclonal peak in the gamma region, this is now 3.7 g/l (5.7%) (0.37 g/dl), better than the previous month and certainly lower than early 2020 and 2019, despite being without any myeloma treatment.
My specialist has thus decided to continue the treatment suspension until November. This, for me, is good news, as I am almost at nine years of treatment for this illness.
My hematologist is reluctant to accept that the Imnovid (Pomalyst) has caused me no fewer than three of the very worrying incidents of losing consciousness (which to me is an unacceptable side effect). I have agreed to having a 24-hour heart surveillance, although my cardiologist has already told me that my heart is in excellent shape. I must await further news.
Best Wishes,
Victor L.
Warmest Greetings to all of you, my friends.
Following my being hospitalized by emergency ambulance and paramedics due to what I believe to be extreme side effects of my treatment, which included Imnovid (Pomalyst, pomalidomide), I am now having blood tests at home twice per week and my myeloma treatment has been suspended for the past three weeks.
The blood test results received yesterday demonstrate an improvement in virtually all areas. I would make special mention of my hemoglobin, which had previously been at a level which required a weekly injection, at home, of Binocrit (epoetin alfa - rch) 30000 IU. My hemoglobin level has improved so that these injections are no longer necessary.
Yesterday I had my weekly visit to the hematology department of our hospital. My specialist expressed his satisfaction with my general state of health, and he showed me this week's electrophoresis results, which showed a good reduction in my monoclonal peak in the gamma region, this is now 3.7 g/l (5.7%) (0.37 g/dl), better than the previous month and certainly lower than early 2020 and 2019, despite being without any myeloma treatment.
My specialist has thus decided to continue the treatment suspension until November. This, for me, is good news, as I am almost at nine years of treatment for this illness.
My hematologist is reluctant to accept that the Imnovid (Pomalyst) has caused me no fewer than three of the very worrying incidents of losing consciousness (which to me is an unacceptable side effect). I have agreed to having a 24-hour heart surveillance, although my cardiologist has already told me that my heart is in excellent shape. I must await further news.
Best Wishes,
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: Kyprolis, Pomalyst & dexamethasone treatment
Thanks for sharing your recent results, Victor. It is interesting that the myeloma markers show improvement despite you taking a break from treatment. I hope that this trend continues when you get back onto treatments and that you do not have any more severe side effects. I have been on and off of treatments over the years but am still here after 11 years, and so I have hope for the future too.
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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: Kyprolis, Pomalyst & dexamethasone treatment
It really is interesting that your blood work continues to show improvement. Great news, though, and another month off of treatment has to sound pretty good right now. I hope these positive trends continue!
MIke
MIke
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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
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