› Forums › Cutaneous Melanoma Community › Started Keytruda on January 20th
- This topic has 33 replies, 3 voices, and was last updated 8 years, 3 months ago by
Scooby123.
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- January 31, 2016 at 1:21 pm
After reading posts for a few months and finding many helpful, I thought I should contribute, hence the post. I'm a Brit living in the UK, my first melanoma was in 1995. A year later, following a resection of lymph node mets in my groin I joined a trial of Cancervax at JWCI in Santa Monica. Although overall the trial was unsuccessful, it seemed to work for me. I was NED for 18 years before presenting in December 2014 with two new primaries and a local recurrence on my flank. During 2015 I had 7 subcutaneous mets excised at the Royal Marsden Hospial in London. My CT scan earlier this month showed progression to lymph nodes in my neck and chest as well as a couple more subcutaneous mets. On January 20th I started on Keytruda. The first week I had negligible side effects but the last few days I've had headaches, fatigue and night sweats. All manageable. I had the option of Yervoy and Opdivo but chose Keytruda because I have a low tumour burden and normal ldh. The more severe side effects of ipi put me off the combo therapy but if I don't respond to Keytruda that could be the next step.
- Replies
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- January 31, 2016 at 7:08 pm
Hi there,
I too live in uk , I had ippi in June 2015 side effects was not bad at all . Keydruda next for me. I am stage 4 liver , lungs one tumour near my heart . May I ask who you see , hope keytruda does the magic for you. Ippi shrunk mine but still there had 2 scans stable as they say but would love to see more shrinkage on next scan .
Good luck with treatment
scooby123❤️
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- February 1, 2016 at 9:00 am
Sorry to hear about your Dad. The advice I had was Keytruda ( pembrolizumab ) because it has ~40% response rate, starts working faster than ipi and has significantly lower side effects than ipi. I was told that if I had a high tumour burden then a combination of ipi and nivolumab would probably be a better treatment. Unfortunately this combination therapy isn't available on the NHS, as I understand it, a cofunding option exists which costs about £4000 per month. Also because the treatment is as a private patient any costs associated with hospitalisation for side effects would be borne by the patient.
Best wishes to your father with his treatment.
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- February 1, 2016 at 9:00 am
Sorry to hear about your Dad. The advice I had was Keytruda ( pembrolizumab ) because it has ~40% response rate, starts working faster than ipi and has significantly lower side effects than ipi. I was told that if I had a high tumour burden then a combination of ipi and nivolumab would probably be a better treatment. Unfortunately this combination therapy isn't available on the NHS, as I understand it, a cofunding option exists which costs about £4000 per month. Also because the treatment is as a private patient any costs associated with hospitalisation for side effects would be borne by the patient.
Best wishes to your father with his treatment.
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- February 1, 2016 at 9:00 am
Sorry to hear about your Dad. The advice I had was Keytruda ( pembrolizumab ) because it has ~40% response rate, starts working faster than ipi and has significantly lower side effects than ipi. I was told that if I had a high tumour burden then a combination of ipi and nivolumab would probably be a better treatment. Unfortunately this combination therapy isn't available on the NHS, as I understand it, a cofunding option exists which costs about £4000 per month. Also because the treatment is as a private patient any costs associated with hospitalisation for side effects would be borne by the patient.
Best wishes to your father with his treatment.
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- February 1, 2016 at 9:42 am
Hi gcooperl,
i live in sheffield, I went to manchester christies to see a melonoma speciallist . I was hoping to get on a trial there nivolumab . Pembro had just been FDA approved in uk so they took the trial off was disappointed . I was told pembro was the best treatment apart from the combo. I know my consultant is not happy combinding treatments but from what I can see people are having good responses but can also get bad side effects. I did ippi well so would love to try the combo but not sure if available here in uk, or even trials. I am seeing my consultant next week so got lots to ask him.
hope this treatment works for your dad, I too liver lungs, and anyway eles it might be .
good luck keep update ❤️
scooby123
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- February 1, 2016 at 9:42 am
Hi gcooperl,
i live in sheffield, I went to manchester christies to see a melonoma speciallist . I was hoping to get on a trial there nivolumab . Pembro had just been FDA approved in uk so they took the trial off was disappointed . I was told pembro was the best treatment apart from the combo. I know my consultant is not happy combinding treatments but from what I can see people are having good responses but can also get bad side effects. I did ippi well so would love to try the combo but not sure if available here in uk, or even trials. I am seeing my consultant next week so got lots to ask him.
hope this treatment works for your dad, I too liver lungs, and anyway eles it might be .
good luck keep update ❤️
scooby123
-
- February 1, 2016 at 9:42 am
Hi gcooperl,
i live in sheffield, I went to manchester christies to see a melonoma speciallist . I was hoping to get on a trial there nivolumab . Pembro had just been FDA approved in uk so they took the trial off was disappointed . I was told pembro was the best treatment apart from the combo. I know my consultant is not happy combinding treatments but from what I can see people are having good responses but can also get bad side effects. I did ippi well so would love to try the combo but not sure if available here in uk, or even trials. I am seeing my consultant next week so got lots to ask him.
hope this treatment works for your dad, I too liver lungs, and anyway eles it might be .
good luck keep update ❤️
scooby123
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- February 1, 2016 at 12:01 pm
Hi Scooby123
NICE are looking at ipi and nivolumab combo therapy and are due to decide in September 2016. ID848 is the relevant document on the NICE site. Also, as I mentioned in my earlier post, the Marsden offered it to me on a cofunding basis. The NHS would pay for the ipi, I would pay for the nivolumab, cost about £4000 per month. Not sure about trials. I've been excluded from a couple of trials because I had vaccine treatment in the US in the 1990s. Good luck with your consultant next week and please share any news.
good luck, Mel J.
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- February 1, 2016 at 12:01 pm
Hi Scooby123
NICE are looking at ipi and nivolumab combo therapy and are due to decide in September 2016. ID848 is the relevant document on the NICE site. Also, as I mentioned in my earlier post, the Marsden offered it to me on a cofunding basis. The NHS would pay for the ipi, I would pay for the nivolumab, cost about £4000 per month. Not sure about trials. I've been excluded from a couple of trials because I had vaccine treatment in the US in the 1990s. Good luck with your consultant next week and please share any news.
good luck, Mel J.
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- February 1, 2016 at 6:10 pm
Hi thank you for info, your consultant really good I saw him on TV last year. The combo I feel could be a good option for me I tolerated ippi well. I know we never know how side effects will effect us but feel while I am young I could tolorate it better. Will ask next week.Did you travel too US for the vaccine treatment
Thanks for info Mel J
scooby123❤️
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- February 1, 2016 at 6:10 pm
Hi thank you for info, your consultant really good I saw him on TV last year. The combo I feel could be a good option for me I tolerated ippi well. I know we never know how side effects will effect us but feel while I am young I could tolorate it better. Will ask next week.Did you travel too US for the vaccine treatment
Thanks for info Mel J
scooby123❤️
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- February 1, 2016 at 7:51 pm
I've only seen him once but I get the benefit of his experience through the multidisciplinary team approach. But I have to say the clinical staff are all brilliant.
In 1996 after mets in my groin were cut out I spent about 8 weeks in Santa Monica at the John Wayne Cancer Institute getting their cancervax as part of a phase 2 trial involving different dosages of bcg. I worked most of my career with an American multinational and they paid my expenses and gave me a project in LA. I was very lucky that they were so supportive. Whilst I was there a nurse from St George's in London came for training with the vaccine as St Georges were gong to be part of a phase 3 trial. Although not a part of that trial she helped me get my treatment transferred to London. I was on monthly vaccine injections until 1999 when we moved to Switzerland with my job. Best of luck with your treatment. Mel J
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- February 1, 2016 at 7:51 pm
I've only seen him once but I get the benefit of his experience through the multidisciplinary team approach. But I have to say the clinical staff are all brilliant.
In 1996 after mets in my groin were cut out I spent about 8 weeks in Santa Monica at the John Wayne Cancer Institute getting their cancervax as part of a phase 2 trial involving different dosages of bcg. I worked most of my career with an American multinational and they paid my expenses and gave me a project in LA. I was very lucky that they were so supportive. Whilst I was there a nurse from St George's in London came for training with the vaccine as St Georges were gong to be part of a phase 3 trial. Although not a part of that trial she helped me get my treatment transferred to London. I was on monthly vaccine injections until 1999 when we moved to Switzerland with my job. Best of luck with your treatment. Mel J
-
- February 1, 2016 at 7:51 pm
I've only seen him once but I get the benefit of his experience through the multidisciplinary team approach. But I have to say the clinical staff are all brilliant.
In 1996 after mets in my groin were cut out I spent about 8 weeks in Santa Monica at the John Wayne Cancer Institute getting their cancervax as part of a phase 2 trial involving different dosages of bcg. I worked most of my career with an American multinational and they paid my expenses and gave me a project in LA. I was very lucky that they were so supportive. Whilst I was there a nurse from St George's in London came for training with the vaccine as St Georges were gong to be part of a phase 3 trial. Although not a part of that trial she helped me get my treatment transferred to London. I was on monthly vaccine injections until 1999 when we moved to Switzerland with my job. Best of luck with your treatment. Mel J
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- February 1, 2016 at 6:10 pm
Hi thank you for info, your consultant really good I saw him on TV last year. The combo I feel could be a good option for me I tolerated ippi well. I know we never know how side effects will effect us but feel while I am young I could tolorate it better. Will ask next week.Did you travel too US for the vaccine treatment
Thanks for info Mel J
scooby123❤️
-
- February 1, 2016 at 12:01 pm
Hi Scooby123
NICE are looking at ipi and nivolumab combo therapy and are due to decide in September 2016. ID848 is the relevant document on the NICE site. Also, as I mentioned in my earlier post, the Marsden offered it to me on a cofunding basis. The NHS would pay for the ipi, I would pay for the nivolumab, cost about £4000 per month. Not sure about trials. I've been excluded from a couple of trials because I had vaccine treatment in the US in the 1990s. Good luck with your consultant next week and please share any news.
good luck, Mel J.
-
- January 31, 2016 at 7:08 pm
Hi there,
I too live in uk , I had ippi in June 2015 side effects was not bad at all . Keydruda next for me. I am stage 4 liver , lungs one tumour near my heart . May I ask who you see , hope keytruda does the magic for you. Ippi shrunk mine but still there had 2 scans stable as they say but would love to see more shrinkage on next scan .
Good luck with treatment
scooby123❤️
-
- January 31, 2016 at 7:08 pm
Hi there,
I too live in uk , I had ippi in June 2015 side effects was not bad at all . Keydruda next for me. I am stage 4 liver , lungs one tumour near my heart . May I ask who you see , hope keytruda does the magic for you. Ippi shrunk mine but still there had 2 scans stable as they say but would love to see more shrinkage on next scan .
Good luck with treatment
scooby123❤️
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Tagged: cutaneous melanoma
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