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Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thanks for the update, Victor! It's good to hear that your kidney surgery went well, and I hope that the return to Pomalyst will help to reduce the beta 2 proteins. Best wishes on your recovery.
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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, you are very kind!
Victor L
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 for your update, Victor. I'm so glad to hear that you are doing well and that you no longer have any pain related to your kidney surgery.
I hope your remaining kidney stays healthy and that your next set of lab results continue to show that your myeloma is under control.
Best wishes,
Cheryl
I hope your remaining kidney stays healthy and that your next set of lab results continue to show that your myeloma is under control.
Best wishes,
Cheryl
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you, Cheryl G, for your post and good wishes. I have, in fact, had my last home visit this morning from the nurse who has been visiting every two days for the purpose of cleaning and re-dressing the small incision area where the surgery for the kidney removal took place. She is satisfied that no further attention is required. My current two-weekly blood tests for the myeloma will show up any problems if they should arise, and my urologist will do a check-up every six months.
I still marvel at the fact that the main incision for the kidney removal is small and is similar to what I would expect for an appendectomy, the lower right abdomen. The myeloma treatment is continuing as normal with two or three appointments at the local hospital each year. In January 2019 it will be 7 years since my original myeloma diagnosis at stage 3 and 10 years since I became unwell.
Best Wishes to you all and thank you again for your interest.
Victor L
I still marvel at the fact that the main incision for the kidney removal is small and is similar to what I would expect for an appendectomy, the lower right abdomen. The myeloma treatment is continuing as normal with two or three appointments at the local hospital each year. In January 2019 it will be 7 years since my original myeloma diagnosis at stage 3 and 10 years since I became unwell.
Best Wishes to you all and thank you again for your interest.
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
Over the past few weeks I have experienced some lower back pain in the area close to where my cancerous kidney once resided. On some days I would take over-the-counter painkillers, but ultimately I felt the need to discuss the matter with my hospital hematologist. Earlier this week I visited his secretary and asked if she could pass on a message to him. The same day she telephoned me to say that the doctor would like to see me without delay.
I had my impromptu appointment yestedrday, December 7. He said he wants to take 'good care' of me seeing as how I am one of his oldest myeloma patients ('oldest' in terms of survival time, at seven years since the start of treatment).
He feels that I am in good shape for a 65-year-old patient, myeloma figures permit us to stop all treatments for the time being; Pomalyst and Zometa, from now on there will only be one full blood test each month. However, he is concerned over the back pain and is requesting an urgent MRI examination to eliminate any risk that there may be some 'evolution' of malignant cells in the lower back / abdomen regions.
I explained to him that during my regular four-week Pomalyst treatment cycle my general well-being deteriorates substantially. By week three I am extremely tired and have difficulty walking without the risk of falling, the back pain becomes severe, and I will have numbness and loss of sensation in my feet and, to a lesser degree, in my fingers. However in week four, the 7 days without Pomalyst, these side-effect symptoms subside to the point of disappearing. For this I am happy to be taking a treatment break.
Best Wishes to you all for Christmas and the New Year..
I had my impromptu appointment yestedrday, December 7. He said he wants to take 'good care' of me seeing as how I am one of his oldest myeloma patients ('oldest' in terms of survival time, at seven years since the start of treatment).
He feels that I am in good shape for a 65-year-old patient, myeloma figures permit us to stop all treatments for the time being; Pomalyst and Zometa, from now on there will only be one full blood test each month. However, he is concerned over the back pain and is requesting an urgent MRI examination to eliminate any risk that there may be some 'evolution' of malignant cells in the lower back / abdomen regions.
I explained to him that during my regular four-week Pomalyst treatment cycle my general well-being deteriorates substantially. By week three I am extremely tired and have difficulty walking without the risk of falling, the back pain becomes severe, and I will have numbness and loss of sensation in my feet and, to a lesser degree, in my fingers. However in week four, the 7 days without Pomalyst, these side-effect symptoms subside to the point of disappearing. For this I am happy to be taking a treatment break.
Best Wishes to you all for Christmas and the New Year..
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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
February 2019 update.
My hospital appointment today has produced some modifications to my various treatments;
As of today I am re-starting the daily Pomalyst (Imnovid, pomalidomide) 4 mg to try and stabilise a steady increase in my M-spike since suspending treatment last year. My hematologist is reasonably confident it will work; if not, we will try an alternative.
I will re-start weekly blood tests with a full electrophoresis and urine analysis once a month, shortly before my monthly hospital appointments.
Since December 2018 most lower back pain has drastically subsided, leading me to believe that the pain was an after effect of the trauma caused by the kidney removal surgery last September. I do not take any pain controlling medications.
I will have a PET scan within the next month to confirm whether the kidney tumour was an isolated event. This will take the place of the MRI. The hematologist confirmed that the tumour was probably caused by the various myeloma treatments I have had since 2012.
Kind Regards to you all.
Victor L
My hospital appointment today has produced some modifications to my various treatments;
As of today I am re-starting the daily Pomalyst (Imnovid, pomalidomide) 4 mg to try and stabilise a steady increase in my M-spike since suspending treatment last year. My hematologist is reasonably confident it will work; if not, we will try an alternative.
I will re-start weekly blood tests with a full electrophoresis and urine analysis once a month, shortly before my monthly hospital appointments.
Since December 2018 most lower back pain has drastically subsided, leading me to believe that the pain was an after effect of the trauma caused by the kidney removal surgery last September. I do not take any pain controlling medications.
I will have a PET scan within the next month to confirm whether the kidney tumour was an isolated event. This will take the place of the MRI. The hematologist confirmed that the tumour was probably caused by the various myeloma treatments I have had since 2012.
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: Pomalyst, cyclophosphamide & dexamethasone treatment
Thanks for the update, Victor. I'm sorry to hear that your M-spike has been increasing. Has it gone up a lot since you stopped Pomalyst, or is it more an issue that it is increasing steadily, suggesting that it eventually could go up a lot.
In any case, I hope the Pomalyst works and stops the increases. Good luck!
In any case, I hope the Pomalyst works and stops the increases. Good luck!
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Thanks TerryH,
The Pomalyst was working well, although with some side effects, but it is not surprising that the M-spike has started to creep upwards. It is not too serious at this point, but it would be after another two or three months, hence the need to restart. It would be more worrying if the increase had occurred whilst still taking the Pomalyst.
Incidentally, I will no longer receive Zometa as it is felt that it will put additional stress on my remaining kidney. I also received confirmation today of my PET scan appointment, which will be within two weeks.
Kind Regards,
Victor L
The Pomalyst was working well, although with some side effects, but it is not surprising that the M-spike has started to creep upwards. It is not too serious at this point, but it would be after another two or three months, hence the need to restart. It would be more worrying if the increase had occurred whilst still taking the Pomalyst.
Incidentally, I will no longer receive Zometa as it is felt that it will put additional stress on my remaining kidney. I also received confirmation today of my PET scan appointment, which will be within two weeks.
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
PET Scan Results
Following my surgery last year to remove my right kidney, which had been invaded by a tumour, I was advised to have a PET scan. This involves being injected with a slightly radioactive dextrose liquid which highlights malignant tissue when the scanner results are examined.
My scan has revealed two small tumours next to the spinal column. These can simply be kept under observation. My remaining kidney is clear, but unfortunately there is a mass in the lower intestine /colon which needs to be attended to. I will probably have a stay in the hospital towards the end of April when the procedure will be carried out under general anesthetic.
My Pomalyst (pomalidomide) treatment was interrupted over the past few months, and my myeloma numbers have started to increase. I have completed one month of Imnovid (Pomalyst) 4 mg, and I am now on the second month. This has been combined with a single 20 mg dexamethasone tablet each week.
Last month this treament caused a fall in my white blood cells, which was rectified by a five day course of Granocyte (lenograstim) injections.
Best Wishes to you all,
Victor L
Following my surgery last year to remove my right kidney, which had been invaded by a tumour, I was advised to have a PET scan. This involves being injected with a slightly radioactive dextrose liquid which highlights malignant tissue when the scanner results are examined.
My scan has revealed two small tumours next to the spinal column. These can simply be kept under observation. My remaining kidney is clear, but unfortunately there is a mass in the lower intestine /colon which needs to be attended to. I will probably have a stay in the hospital towards the end of April when the procedure will be carried out under general anesthetic.
My Pomalyst (pomalidomide) treatment was interrupted over the past few months, and my myeloma numbers have started to increase. I have completed one month of Imnovid (Pomalyst) 4 mg, and I am now on the second month. This has been combined with a single 20 mg dexamethasone tablet each week.
Last month this treament caused a fall in my white blood cells, which was rectified by a five day course of Granocyte (lenograstim) injections.
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 the update, Victor! I hope that the Pomalyst helps with the myeloma without causing more neutropenia. Sorry to hear that you now need surgery to deal with a mass in the intestine though. You are a trooper to deal with these health issues, 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
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