Thank you Nancy for your kind words. Waiting for scan results is stressful, I imagined a worse result, but perhaps I can now live to fight another day.
Best Wishes,
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: Pomalyst, cyclophosphamide & dexamethasone treatment
Since my myeloma diagnosis in 2012, I have had numerous up' sand down's. As already mentioned, my specialist recently requested a PET scan, which revealed abnormalities in my intestine and lower esophagus. This investigation may turn out to be a life saver.
Last week I undewent "day surgery" under general anaesthetic and by endoscope. A polyp was removed and a biopsy was performed on a second polyp that was considered to be too large to remove without further investigation. I now await the biopsy results early in May, after which I will undergo further surgery, which will be either by endoscope or more radical depending upon the results.
What has made an impression upon me is that I had virtually no symptoms or discomfort which would have led me to ask for help. If it had not been for the vigilance of my doctor, this danger could have gone unnoticed until it was too late.
Best Wishes to all,
Victor L
Last week I undewent "day surgery" under general anaesthetic and by endoscope. A polyp was removed and a biopsy was performed on a second polyp that was considered to be too large to remove without further investigation. I now await the biopsy results early in May, after which I will undergo further surgery, which will be either by endoscope or more radical depending upon the results.
What has made an impression upon me is that I had virtually no symptoms or discomfort which would have led me to ask for help. If it had not been for the vigilance of my doctor, this danger could have gone unnoticed until it was too late.
Best Wishes 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
Hello again,
Just an update on my abdominal / colon polyp. I have today received the biopsy results, which show the 4 cm growth to be benign and, although removal is essential because it is blocking the intestine, it is not urgent, I can choose my own date, probably June 2019.
Once again, Best Wishes to you all,,
Victor L
Just an update on my abdominal / colon polyp. I have today received the biopsy results, which show the 4 cm growth to be benign and, although removal is essential because it is blocking the intestine, it is not urgent, I can choose my own date, probably June 2019.
Once again, 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
I'm sure that it was not fun waiting on the pathology report for that polyp, Victor. Glad to hear that it was nothing malignant!
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Mike,
Thanks for your response! Yes, certainly a big relief, it is horrible to think of having two malignancies to fight. As I have said previously, push for the PET scans and all the preventative examinations. I am surprised that such potentially life threatening conditions can develop without any symptoms. When the symptoms finally arrive, you may have lost valuable months, the difference between life and death.
Victor L
Thanks for your response! Yes, certainly a big relief, it is horrible to think of having two malignancies to fight. As I have said previously, push for the PET scans and all the preventative examinations. I am surprised that such potentially life threatening conditions can develop without any symptoms. When the symptoms finally arrive, you may have lost valuable months, the difference between life and death.
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
I am currently having consultations every 3 months, my latest being last week, during which I was approved to continue treatment with Pomalyst 4 mg at the usual 21 days per month together with a weekly dose of dexamethasone 20 mg. This means that the treatment has now produced useful results for me for three years. Although my twice-monthly blood test results can be described as satisfactory, they do show a stabile monoclonal peak of around 8 g/L (0.8 g/dL). My hematologist carried out more specialised blood examinations this time and will contact me if he considers any treatment modifications necessary.
I am experiencing side effects which affect my quality of life, I tend to think they are mainly treatment-related rather than disease-related, the most noteworthy include: fatigue and tiredness, which make it a little difficult to ascend more than three floors using the stairways, and a desire to sleep for an hour after returning from visits to the town. Conversely, I often find it difficult to sleep at night, and I am reluctant to take any sleep-inducing medications. In addition I have what can be described as hyper-sensitivity in the lower legs and feet, which further add to my sleeping problems. I have various aches and pains, but these are based in my muscles and not the bones, they are almost invariably triggered by movement, for example getting out of the car, and they respond to normal painkillers and the uttering of one or two expletives!
Best Wishes to all. Victor L
I am experiencing side effects which affect my quality of life, I tend to think they are mainly treatment-related rather than disease-related, the most noteworthy include: fatigue and tiredness, which make it a little difficult to ascend more than three floors using the stairways, and a desire to sleep for an hour after returning from visits to the town. Conversely, I often find it difficult to sleep at night, and I am reluctant to take any sleep-inducing medications. In addition I have what can be described as hyper-sensitivity in the lower legs and feet, which further add to my sleeping problems. I have various aches and pains, but these are based in my muscles and not the bones, they are almost invariably triggered by movement, for example getting out of the car, and they respond to normal painkillers and the uttering of one or two expletives!
Best Wishes 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
I will be having further 'day surgery' next week to remove the second polyp from my intestine now that it has been confirmed as benign. This will involve a 24-hour stay in hospital, and the procedure wll be carried out under general anesthetic. It seems that these polyps are not uncommon in the general population and may have no connection with my myeloma treatment.
I am now into my fourth year of treatment with Pomalyst (pomalidomide, Imnovid) with which I take a small 20 mg dexamethasone tablet each week. I am quite pleased to have seen a 25% reduction in my myeloma electrophoresis test results over the last month. Iit currently stands at 5.9 g/L (0.59 g/dL) compared with 8.3 g/L (0.83 g/dL) one month ago and 20.7 g/L (2.07 g/dL) at the start of treatment in 2016.
I would like to mention side effects which are a problem to me and have resulted in an emergency hospitalisation by ambulance one month ago. This incident occured during a routine visit to the supermarket during which I became unstable on my feet and, with very little warning, caused me to fall down. My visit to the emergency unit revealed no significant problems apart from a low blood-calcium level. I feel that I should expand a little on this issue because it presents a risk which should be minimised if at all possible.
I take the Pomalyst for 21 days each month followed by a 7 day period without treatment. The undesirable effects seem to occur during the 7 day 'rest' period, leading me to believe that I am vulnerable to 'withdrawal' effects. Symptoms include lack of sensation in the feet and lower legs combined with balance problems. I would certainly advise anybody experiencing similar problems to discuss the matter with their doctor and to endeavor to have a friend or family member accompany them when going out. Carrying details of the treatment regime could also be invaluable.
It seems that most of these effects improve by the end of the one-week treatment free period, by which time the next treatment cycle will start again. During the 21-day treatment period there are few if any problems. I intend to discuss the situation in detail with my myeloma specialist during my next appointment in September.
Best Wishes to you all.
Victor L.
I am now into my fourth year of treatment with Pomalyst (pomalidomide, Imnovid) with which I take a small 20 mg dexamethasone tablet each week. I am quite pleased to have seen a 25% reduction in my myeloma electrophoresis test results over the last month. Iit currently stands at 5.9 g/L (0.59 g/dL) compared with 8.3 g/L (0.83 g/dL) one month ago and 20.7 g/L (2.07 g/dL) at the start of treatment in 2016.
I would like to mention side effects which are a problem to me and have resulted in an emergency hospitalisation by ambulance one month ago. This incident occured during a routine visit to the supermarket during which I became unstable on my feet and, with very little warning, caused me to fall down. My visit to the emergency unit revealed no significant problems apart from a low blood-calcium level. I feel that I should expand a little on this issue because it presents a risk which should be minimised if at all possible.
I take the Pomalyst for 21 days each month followed by a 7 day period without treatment. The undesirable effects seem to occur during the 7 day 'rest' period, leading me to believe that I am vulnerable to 'withdrawal' effects. Symptoms include lack of sensation in the feet and lower legs combined with balance problems. I would certainly advise anybody experiencing similar problems to discuss the matter with their doctor and to endeavor to have a friend or family member accompany them when going out. Carrying details of the treatment regime could also be invaluable.
It seems that most of these effects improve by the end of the one-week treatment free period, by which time the next treatment cycle will start again. During the 21-day treatment period there are few if any problems. I intend to discuss the situation in detail with my myeloma specialist during my next appointment in September.
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
Thanks for sharing this information Victor, and good luck in your upcoming surgery. It's a good precaution to have someone with you if you feel unsteady and prone to passing out. Good to know that your 'M' protein value has fallen to a lower level too. Your 'M' protein value is about the same as mine, and I will be starting treatment again if it gets much higher. Ten years ago at diagnosis, it was 58 g/l (5.8 gl/dL) and I was in quite a dire situation with having myeloma!
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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: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you Nancy for your comments and good advice. I have had my three-monthly check this week and my test results are virtually the same and so my treatment will remain unchanged until the end of the year.
I suffered an unpleasant infection in my upper abdomen two weeks ago. This manifested itself by awaking me in the early hours with severe pain similar to indigestion. This did not respond to any home treatments, such as antacids, and I decided to visit the emergency department of our local hospital. I was admitted immediately and remained there for five days for treatment with numerous intravenous antibiotics and pain killers, including morphine and paracetamol (Tylenol, acetaminophen). The problem is now completely cured but was a reminder that our multiple myeloma treatments can weaken our immune systems and make us more vulnerable to serious infections.
The incident arose just days after the surgery for removal of the large polyp in my intestine. There could well be a connection here. During my hospital stay, I was given an MRI examination, which revealed stones in my gallbladder. At the end of the month I will see a specialist who will advise me as to the options for treatment.
Incidentally, I have been advised that the intestinal polyp was biopsied and confirmed to be non-magnant.
Best Wishes to you all,
Victor L.
I suffered an unpleasant infection in my upper abdomen two weeks ago. This manifested itself by awaking me in the early hours with severe pain similar to indigestion. This did not respond to any home treatments, such as antacids, and I decided to visit the emergency department of our local hospital. I was admitted immediately and remained there for five days for treatment with numerous intravenous antibiotics and pain killers, including morphine and paracetamol (Tylenol, acetaminophen). The problem is now completely cured but was a reminder that our multiple myeloma treatments can weaken our immune systems and make us more vulnerable to serious infections.
The incident arose just days after the surgery for removal of the large polyp in my intestine. There could well be a connection here. During my hospital stay, I was given an MRI examination, which revealed stones in my gallbladder. At the end of the month I will see a specialist who will advise me as to the options for treatment.
Incidentally, I have been advised that the intestinal polyp was biopsied and confirmed to be non-magnant.
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
Thanks for sharing about what you went through following surgery, Victor! Glad to hear you are better now, and it shows that getting to the hospital when experiencing pain was the right thing to do. Severe pain could be a sign of various problems, so seeking medical help promptly was wise! Of course, a person could also call 911 and get help that way; they might send an ambulance! (There must be a similar emergency call as '911' in France?)
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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
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