Hi Ian,
Many thanks for your words of encouragement, I hope you are right ! The Pomalyst is certainly a good treatment for me, with minimal side effects, enabling me to follow a near-normal life at the present time.
Best Wishes from 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
I have had my annual consultation with the cardiologist this week. It seems that the Innohep (tinzaparin) anticoagulant injections have done a good job of cleaning out my veins since the deep vein thrombosis problem experienced over a year ago. The cardiologist will recommend that my hematologist stops the daily injections and instead prescribes an oral blood thinning medication from next month.
I explained that I have been experiencing a problem with my left arm which is best described as an itching sensation resulting in the skin becoming very inflamed and sensitive. In his opinion, this has probably been caused by an injection of Prevnar which was given in September as a protection against the risk of pneumonia. I will see the family doctor who can hopefully offer some ointment which can reduce this irritation.
Finally, my myeloma M-spike remained stable this month, the fifteenth month at or around 5 g/L (0.5 g/dL).
Best Wishes to you all for 2018.
I explained that I have been experiencing a problem with my left arm which is best described as an itching sensation resulting in the skin becoming very inflamed and sensitive. In his opinion, this has probably been caused by an injection of Prevnar which was given in September as a protection against the risk of pneumonia. I will see the family doctor who can hopefully offer some ointment which can reduce this irritation.
Finally, my myeloma M-spike remained stable this month, the fifteenth month at or around 5 g/L (0.5 g/dL).
Best Wishes to you all for 2018.
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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 visited the hospital this week for my appointment with the hematologist. In order to enter the main reception area, you have the choice of climbing thirty concrete steps from the parking area, or you can enter the side door and use the elevator. I generally take the latter option because I would find myself getting out of breath on the stairway. However, this time I had a desire to climb the steps, which I did, not only without any breathlessness, but I was even able to go up two steps at a time! An incredible sign that my treatment is not only doing a good job but also without too many negative side effects.
I am now in the twentieth month of treatment with pomalidomide (Pomalyst / Imnovid) 4 mg. The M-spike this week has fallen slightly to 4 g/L (0.4 g/dL), my hematologist was pleased with the blood test results and, on a day when we are fighting our way through the snow, he has arranged my next appointment for the middle of June. How different from 2012 when I was having appointments twice per week and being transported by ambulance for the two hundred mile round trip.
The only thing of concern is the probable allergic reaction, mentioned previously, on my left forearm and to a lesser degree my right forearm; there is a problem of itching and a number of red spots / swellings. I have been given an appointment to see the dermatologist at the end of February, who will perform a biopsy to eliminate the risk of a serious problem, I can then be prescribed some more effective treatment than what I have had so far. There is also some discussion going on with the cardiologist to decide the best oral treatment to replace the daily Innohep blood-thinning injections.
Best Wishes from Victor L.
I am now in the twentieth month of treatment with pomalidomide (Pomalyst / Imnovid) 4 mg. The M-spike this week has fallen slightly to 4 g/L (0.4 g/dL), my hematologist was pleased with the blood test results and, on a day when we are fighting our way through the snow, he has arranged my next appointment for the middle of June. How different from 2012 when I was having appointments twice per week and being transported by ambulance for the two hundred mile round trip.
The only thing of concern is the probable allergic reaction, mentioned previously, on my left forearm and to a lesser degree my right forearm; there is a problem of itching and a number of red spots / swellings. I have been given an appointment to see the dermatologist at the end of February, who will perform a biopsy to eliminate the risk of a serious problem, I can then be prescribed some more effective treatment than what I have had so far. There is also some discussion going on with the cardiologist to decide the best oral treatment to replace the daily Innohep blood-thinning injections.
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: Pomalyst, cyclophosphamide & dexamethasone treatment
Nice to hear you are doing well Victor.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi,
If you take Pomalyst 21 days, 7 days off, what days do you take cyclophosphamide and dex, if they are both taken every 7 days, 3 out of 4 weeks?
Thanks kindly for your input.
If you take Pomalyst 21 days, 7 days off, what days do you take cyclophosphamide and dex, if they are both taken every 7 days, 3 out of 4 weeks?
Thanks kindly for your input.
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Little Monkey wrote:
Hello and thank you for your message. I hope all is going well for your father too.
Kind Regards from Victor L
Nice to hear you are doing well Victor.
Hello and thank you for your message. I hope all is going well for your father too.
Kind Regards 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: Pomalyst, cyclophosphamide & dexamethasone treatment
Norita asked:
Hello Norita and thanks for your question.
It is now almost one year since the cyclophosphamide and dexamethasone were stopped and my current maintenance treatment started. This consists of the pomalidomide 4 mg every day for three weeks out of the month and a one week treatment-free week.
To answer your question, during my full treatment period, I would take the dexamethasone 40 mg once per week, every week, together with six 50 mg tablets of cyclophosphamide, total 300 mg. This meant that the so-called treatment-free week would still be affected by the side effects of all three medications, although on paper I would have seven days without taking anything.
If you check out the first page of this thread, specifically the first post in the thread (from June 2016), you can see a more detailed description.
Kind Regards from Victor L.
If you take Pomalyst 21 days, 7 days off, what days do you take cyclophosphamide and dex, if they are both taken every 7 days, 3 out of 4 weeks?
Hello Norita and thanks for your question.
It is now almost one year since the cyclophosphamide and dexamethasone were stopped and my current maintenance treatment started. This consists of the pomalidomide 4 mg every day for three weeks out of the month and a one week treatment-free week.
To answer your question, during my full treatment period, I would take the dexamethasone 40 mg once per week, every week, together with six 50 mg tablets of cyclophosphamide, total 300 mg. This meant that the so-called treatment-free week would still be affected by the side effects of all three medications, although on paper I would have seven days without taking anything.
If you check out the first page of this thread, specifically the first post in the thread (from June 2016), you can see a more detailed description.
Kind Regards 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: Pomalyst, cyclophosphamide & dexamethasone treatment
Thank you, Victor! Which day of the week out of the 7 days did you took the cyclophosphamide and dexamethasone? If you took pomalidomide day 1, on say Sunday, you took the cyclophosphamide and dexamethasone on that day too, or other days?
Thanks kindly.
Thanks kindly.
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Norita,
Yes, I would take all the myeloma medications on days 1, 7, and 14, and also on day 21, but on day 21 I would take the last of the Pomalyst capsules and then nothing until day 28, when I would start the whole process again!
I hope this helps.
Victor L
Yes, I would take all the myeloma medications on days 1, 7, and 14, and also on day 21, but on day 21 I would take the last of the Pomalyst capsules and then nothing until day 28, when I would start the whole process again!
I hope this helps.
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
Secondary cancer diagnosis?
It will soon be two years since I started the Pomalyst regimen. Over the past two weeks, I have received a diagnosis of a possible tumor in the right kidney, which requires urgent attention.
For over one month, I had noticed some pain in the groin area, especially when driving, I was concerned that it could be connected with a hernia operation, which was done almost 30 years ago, so I asked for an ultrasound examination. The highly experienced doctor in our local medical imaging department quickly eliminated any possible hernia presence and went on to make a routine check of the other areas of the abdomen.
The left kidney was perfect, but upon looking at the right kidney, he immediately noticed a 4 cm mass, prompting him to advise a CT scan. The scan was done earlier this week, and he told me I could collect the report after two days. I realised that all was not well when I asked his secretary for my results, and she told me that the doctor would like to speak with me.
After a short wait, he called me into his office where he explained that the pain in the groin was probably caused by an enlarged appendix. However, his main concern was the mass in the kidney, which he was now referring to as a tumor. He explained that if it was benign, then there would not be any danger, but if it is malignant, then "there is not much time". All other areas are clear (lungs, bladder, liver etc.), and within an hour, I had received an appointment with a surgeon at a hospital about 50 miles away; this will be next week.
I do not know whether this unwelcome development has been caused be the myeloma or whether it is connected with the treatment for the myeloma, and I think specifically of the cyclophosphamide, or perhaps it is a totally unrelated tumor, which would have occurred anyway. The coming weeks will perhaps bring some answers.
Best Wishes from Victor L.
It will soon be two years since I started the Pomalyst regimen. Over the past two weeks, I have received a diagnosis of a possible tumor in the right kidney, which requires urgent attention.
For over one month, I had noticed some pain in the groin area, especially when driving, I was concerned that it could be connected with a hernia operation, which was done almost 30 years ago, so I asked for an ultrasound examination. The highly experienced doctor in our local medical imaging department quickly eliminated any possible hernia presence and went on to make a routine check of the other areas of the abdomen.
The left kidney was perfect, but upon looking at the right kidney, he immediately noticed a 4 cm mass, prompting him to advise a CT scan. The scan was done earlier this week, and he told me I could collect the report after two days. I realised that all was not well when I asked his secretary for my results, and she told me that the doctor would like to speak with me.
After a short wait, he called me into his office where he explained that the pain in the groin was probably caused by an enlarged appendix. However, his main concern was the mass in the kidney, which he was now referring to as a tumor. He explained that if it was benign, then there would not be any danger, but if it is malignant, then "there is not much time". All other areas are clear (lungs, bladder, liver etc.), and within an hour, I had received an appointment with a surgeon at a hospital about 50 miles away; this will be next week.
I do not know whether this unwelcome development has been caused be the myeloma or whether it is connected with the treatment for the myeloma, and I think specifically of the cyclophosphamide, or perhaps it is a totally unrelated tumor, which would have occurred anyway. The coming weeks will perhaps bring some answers.
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
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