Hi Victor,
I would tell your doctor about your disappearing mole. I have a friend who was diagnosed with melanoma, and my understanding from her was that it became suspicious because it disappeared, and only after that was it determined to be melanoma.
Forums
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Iwem,
Thank you for your good advice and I will certainly mention this on my next consultation, As mentioned already I have a visit to the family doctor at least once a month and another with the hematologist every month also. Both have already examined the mole and I am sure they will advise me accordingly.
Thanks again and Kind Regards,
Victor L
Thank you for your good advice and I will certainly mention this on my next consultation, As mentioned already I have a visit to the family doctor at least once a month and another with the hematologist every month also. Both have already examined the mole and I am sure they will advise me accordingly.
Thanks again and 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
Thanks for your recent updates, Victor. I'm glad to hear your M-spike is back to heading in the right direction, and that you're no longer anemic. I'm hoping these improvements continue in 2017.
Good luck!
Good luck!
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi TerryH,
Thank you for your message, I will have my monthly consultation next week, and I will let you know the verdict. It has been a tough month mainly because I was ill with the influenza bug (despite having the vaccination) and, as usual, it resulted in congestion on the lungs. I had plenty of antibiotics prescribed, but fortunately I escaped the need for the extra oxygen.
Kind Regards,
Victor L
Thank you for your message, I will have my monthly consultation next week, and I will let you know the verdict. It has been a tough month mainly because I was ill with the influenza bug (despite having the vaccination) and, as usual, it resulted in congestion on the lungs. I had plenty of antibiotics prescribed, but fortunately I escaped the need for the extra oxygen.
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
Hello.
I feel I have been to school reading your thread, Victor. I too am in the process of consultation, then testing to see if transplant is my best line of defense. The idea of a transplant frightens me. Recovery of a transplant frightens me. Thank you for sharing.
TerryH seems to be quite an expert, as does MrPotatohead. Thank you, blessing for continue great response. I continue to follow.
Best regards,
Hopeful1
I feel I have been to school reading your thread, Victor. I too am in the process of consultation, then testing to see if transplant is my best line of defense. The idea of a transplant frightens me. Recovery of a transplant frightens me. Thank you for sharing.
TerryH seems to be quite an expert, as does MrPotatohead. Thank you, blessing for continue great response. I continue to follow.
Best regards,
Hopeful1
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Hi Hopeful1,
Very good to hear from you and I am happy that you may have found something useful in my various posts.
As you will understand, I am in no way a medical professional, and there are many Beacon members more knowledgeable than myself, but I am sure most would agree that we owe it to ourselves to obtain information upon which we can try to take the decisions which we believe are best for us, especially when we are offered a choice about our treatment options, and this would often include the option of whether or not to have a stem cell transplant. I feel it is better to explain to your specialist that you require some time to reflect and try to reach your decision, rather than to give an immediate response, after which you may experience weeks or months of anxiety about whether you should have allowed yourself more time to think it over.
I think many more patients would go for the transplant option if it offered some degree of a curative possibility, and perhaps one day this may be the case, but equally the use of novel therapies may hold the key in the future, or both combined!
My personal view is that even if we experience relapse a little earlier by not being in the transplant protocol, we still have the options of utilising our original treatments along with other treatment combinations, including the most up to date drugs, which are appearing with increasing frequency. This also applies to those have taken the transplant route.
For many specialists, it is often acceptable for the patient to keep the transplant as a last option if all else should fail, I believe research shows that the transplant is most effective when used early on in the course of the disease. I certainly understand your fears and concerns and you are certainly not alone in this. I hope you are able to come to a good decision so that whatever treatment you go for you can feel a sense of commitment right from the start and without too many worries and anxieties.
Best Wishes for a great outcome!
Victor L
Very good to hear from you and I am happy that you may have found something useful in my various posts.
As you will understand, I am in no way a medical professional, and there are many Beacon members more knowledgeable than myself, but I am sure most would agree that we owe it to ourselves to obtain information upon which we can try to take the decisions which we believe are best for us, especially when we are offered a choice about our treatment options, and this would often include the option of whether or not to have a stem cell transplant. I feel it is better to explain to your specialist that you require some time to reflect and try to reach your decision, rather than to give an immediate response, after which you may experience weeks or months of anxiety about whether you should have allowed yourself more time to think it over.
I think many more patients would go for the transplant option if it offered some degree of a curative possibility, and perhaps one day this may be the case, but equally the use of novel therapies may hold the key in the future, or both combined!
My personal view is that even if we experience relapse a little earlier by not being in the transplant protocol, we still have the options of utilising our original treatments along with other treatment combinations, including the most up to date drugs, which are appearing with increasing frequency. This also applies to those have taken the transplant route.
For many specialists, it is often acceptable for the patient to keep the transplant as a last option if all else should fail, I believe research shows that the transplant is most effective when used early on in the course of the disease. I certainly understand your fears and concerns and you are certainly not alone in this. I hope you are able to come to a good decision so that whatever treatment you go for you can feel a sense of commitment right from the start and without too many worries and anxieties.
Best Wishes for a great outcome!
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,
It is a special time for me because it is the fifth anniversary of my initial diagnosis and of my first visit to the hematology department for assessment in January 2012, I remember the one hundred mile trip by four-wheel drive ambulance in the heavy falling snow, and I was collected from our isolated house at 06.00 in the morning. I took a suitcase with me on that day believing that I would be in hospital for some days. On arrival, a nurse greeted me and asked if I was going on holiday!
I have always been grateful at how they helped to put my mind at ease. Following several xrays and a scan, the same nurse – she has remained a good friend to this day – took me to the little restaurant and organised a very welcome lunch, as I had not eaten since the previous evening. As I was eating, she also organised an intravenous injection of Velcade, also in the restaurant! The hematologist then gave me a bag containing my first few days of medications. I was returned home in the same little ambulance, completely overwhelmed at how easy my first treatment and examination had been.
Here I am five years later. This week I had my routine twenty-minute consultation with the same hematologist as back in 2012, having been on the Pomalyst / cyclophosphamide / dexamethasone regimen since last summer. The verdict is that I have a good partial response, with the M-spike stable and below 0.7 grams per decilitre (7 grams per litre), I will now have two more months of the same treatment, after which I will change to a maintenance dose for one year initially, keeping the options open during this period as I am not 'refractory' to any treatments and could, for example, return to using the original Revlimid.
Certainly it seems that for some of us, multiple myeloma is now being monitored and treated in ways which may once have been unimaginable. We certainly have a lot to be grateful for.
Best Wishes to you all from Victor L.
It is a special time for me because it is the fifth anniversary of my initial diagnosis and of my first visit to the hematology department for assessment in January 2012, I remember the one hundred mile trip by four-wheel drive ambulance in the heavy falling snow, and I was collected from our isolated house at 06.00 in the morning. I took a suitcase with me on that day believing that I would be in hospital for some days. On arrival, a nurse greeted me and asked if I was going on holiday!
I have always been grateful at how they helped to put my mind at ease. Following several xrays and a scan, the same nurse – she has remained a good friend to this day – took me to the little restaurant and organised a very welcome lunch, as I had not eaten since the previous evening. As I was eating, she also organised an intravenous injection of Velcade, also in the restaurant! The hematologist then gave me a bag containing my first few days of medications. I was returned home in the same little ambulance, completely overwhelmed at how easy my first treatment and examination had been.
Here I am five years later. This week I had my routine twenty-minute consultation with the same hematologist as back in 2012, having been on the Pomalyst / cyclophosphamide / dexamethasone regimen since last summer. The verdict is that I have a good partial response, with the M-spike stable and below 0.7 grams per decilitre (7 grams per litre), I will now have two more months of the same treatment, after which I will change to a maintenance dose for one year initially, keeping the options open during this period as I am not 'refractory' to any treatments and could, for example, return to using the original Revlimid.
Certainly it seems that for some of us, multiple myeloma is now being monitored and treated in ways which may once have been unimaginable. We certainly have a lot to be grateful for.
Best Wishes to you 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
Re: Pomalyst, cyclophosphamide & dexamethasone treatment
Congratulations, Victor L, on reaching the five-year milestone! Since statistics are gathered on 'five year survival,' it's nice to be past that!
Thanks for sharing about your initial treatment too and wishing you all the best for the next five years!
Thanks for sharing about your initial treatment too and wishing you all the best for the next five years!
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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 for your kind words and congratulations, Nancy! It is good to hear from you.
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
Penultimate Treatment Results
Hello,
I have just received the blood test results for my #8 treatment period, which show an M-spike figure of 0.6 g/dL, slightly lower than last month and hopefully indicating a degree of stability. This week I will commence the ninth period of treatment, which will end next month, after which I will start the maintenance phase.
As expected, side effects have mainly consisted of a 'dulling' of most senses; eyesight slightly blurred, hearing and taste less than perfect, and a lack of sensation in the feet, but nothing too bad, and most of these symptoms last for only two or three days.
Kind regards to all,
Victor L
Hello,
I have just received the blood test results for my #8 treatment period, which show an M-spike figure of 0.6 g/dL, slightly lower than last month and hopefully indicating a degree of stability. This week I will commence the ninth period of treatment, which will end next month, after which I will start the maintenance phase.
As expected, side effects have mainly consisted of a 'dulling' of most senses; eyesight slightly blurred, hearing and taste less than perfect, and a lack of sensation in the feet, but nothing too bad, and most of these symptoms last for only two or three days.
Kind regards 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
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