› Forums › General Melanoma Community › Stage IV newly diagnosed
- This topic has 21 replies, 3 voices, and was last updated 10 years, 1 month ago by
BrianP.
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- April 2, 2014 at 3:01 pm
Hi all,
I have been following this forum fo a few weeks now and find it very helpful and encouraging. I really admire people here and the strength they show in fighting melanoma or taking care of their loved ones.
I am 35 years old, husband and father of a daugher of 1 1/2 years and probably one of the few European members (it seems to me) of this forum.
I have had lots of moles and spots on my body all my life and was used to seeing a dermatologist on a regular basis to get all of them checked. Always tried to avoid to much exposure to direct sun, always used factor 50 sunscreen as I was very aware of my high risk
On January 29 of this year I went to our local university hospital's ER after one month of coughing and 2 nights of severe pain in my thorax. The x-ray showed liquid between my lungs and pleura, CT of the thorax showed something on my pleura, lungs and the top of the liver and adrenal glands as far as visible that according to the doc looked like metastasis of a malignant rumor.
I was admitted right away and 2 days later a biopsy was done and a drain put in to get rid of the liquid. The surgeon told me that it was obviously a malignant melanoma irght after the operation.
Long story short: Pathology report and PET scan revealed that I had stage IV melanoma with mets in lungs and liver, adrenal glands, pleura, abdominal membrane, hip bones and vertebra TH 10. Luckily nothing in the brain. Tumor is BRAF positive, C-Kit negative. Primary unkown.
I spent one month in hospital where in the beginning they were not so sure whether I would survive as my blood params were really bad and there were 3 big mets attacking my liver
Luckily they have a research group specialized in melanoma treatment taking part in a number of trials so I have a very competent team of specialists to take care of me.
I am now taking GSK's Tafinlar + Meikinist combo (the latter through the compassionate use program as apporval for Europe is pending). Judging from the rapid imporvement of my blood params they think that I respond really well to the meds. I have had not side effects at all and will pick up work again next week.
I know that this may only work well for a limited period of time but I am trying to focus on the present and to be happy with what I have.
Just here to say hello to verybody and tell you how much I appreciate the discussions in this forum and how much self-confidence they give me to be ready for my own fight! Looking forward to taking part!
// Chris
- Replies
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- April 2, 2014 at 3:42 pm
Chris,
I'm glad you introduced yourself to the forum. You are right, we don't have much of a European flavor on this board so it's nice to have a different perspective and to hear what is happening in your part of the world in regards to melanoma advances. It sounds like you are getting some great treatment and I hope your next scans confirm your belief that the drugs are working. If you haven't seen it before there is another forum on MIF (Melanoma International Foundation). The forum here is more active and I think provides more information but MIF is a good site also and has some pretty good webinars on it. The moderator is Catherine Poole who has connections all over the world and may be able to help you in the future if you ever need it. Here's the link:
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=c33115fa4339e532228046f7fbc5b4e2
Brian
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- April 2, 2014 at 3:42 pm
Chris,
I'm glad you introduced yourself to the forum. You are right, we don't have much of a European flavor on this board so it's nice to have a different perspective and to hear what is happening in your part of the world in regards to melanoma advances. It sounds like you are getting some great treatment and I hope your next scans confirm your belief that the drugs are working. If you haven't seen it before there is another forum on MIF (Melanoma International Foundation). The forum here is more active and I think provides more information but MIF is a good site also and has some pretty good webinars on it. The moderator is Catherine Poole who has connections all over the world and may be able to help you in the future if you ever need it. Here's the link:
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=c33115fa4339e532228046f7fbc5b4e2
Brian
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- April 2, 2014 at 3:42 pm
Chris,
I'm glad you introduced yourself to the forum. You are right, we don't have much of a European flavor on this board so it's nice to have a different perspective and to hear what is happening in your part of the world in regards to melanoma advances. It sounds like you are getting some great treatment and I hope your next scans confirm your belief that the drugs are working. If you haven't seen it before there is another forum on MIF (Melanoma International Foundation). The forum here is more active and I think provides more information but MIF is a good site also and has some pretty good webinars on it. The moderator is Catherine Poole who has connections all over the world and may be able to help you in the future if you ever need it. Here's the link:
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=c33115fa4339e532228046f7fbc5b4e2
Brian
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- April 2, 2014 at 7:14 pm
Hi Brian,
Thanks for your response. Confirms my impression that there is more exchange at mpip than at mif. Maybe this is also because the forum there is split up into different diagnoses and subtopics. I find Catherine Polle's postings very informative.
I am also hoping that I will see an improvement on those scans? The first ones are schduled for mid May so 12 weeks aft begin of treatment. Is 12 weeks a normal interval for those scans in that stage pf melanoma?
thanks,
c
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- April 2, 2014 at 7:37 pm
Hi Chris,
Where in Europe are you? We are in the UK and unfortunately in a similar situation, my wife was recently Diagnosed with stage 4, braf positive and taking vemurafinib, very positive response at the present time. We are seeing one of the country’s leading experts in melanoma at the bobby robson centre in Newcastle. Please feel free to message me if I can help with anything. -
- April 4, 2014 at 6:41 pm
Hi,
I am being treated at the University of Vienna Medical Center.
The team there is very competent and on the cutting edge of things as melanoma is concerned. Do oyu know what the difference between my drug combo and Vermurafenib is? Just interested why your wife gets a different treatment.
Is she responding weel? Hope not too many side effects!
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- April 4, 2014 at 6:41 pm
Hi,
I am being treated at the University of Vienna Medical Center.
The team there is very competent and on the cutting edge of things as melanoma is concerned. Do oyu know what the difference between my drug combo and Vermurafenib is? Just interested why your wife gets a different treatment.
Is she responding weel? Hope not too many side effects!
-
- April 4, 2014 at 6:41 pm
Hi,
I am being treated at the University of Vienna Medical Center.
The team there is very competent and on the cutting edge of things as melanoma is concerned. Do oyu know what the difference between my drug combo and Vermurafenib is? Just interested why your wife gets a different treatment.
Is she responding weel? Hope not too many side effects!
-
- April 2, 2014 at 7:37 pm
Hi Chris,
Where in Europe are you? We are in the UK and unfortunately in a similar situation, my wife was recently Diagnosed with stage 4, braf positive and taking vemurafinib, very positive response at the present time. We are seeing one of the country’s leading experts in melanoma at the bobby robson centre in Newcastle. Please feel free to message me if I can help with anything. -
- April 2, 2014 at 7:37 pm
Hi Chris,
Where in Europe are you? We are in the UK and unfortunately in a similar situation, my wife was recently Diagnosed with stage 4, braf positive and taking vemurafinib, very positive response at the present time. We are seeing one of the country’s leading experts in melanoma at the bobby robson centre in Newcastle. Please feel free to message me if I can help with anything. -
- April 3, 2014 at 1:07 am
Chris,
The trial I'm on is a PD-1 and Ipi sequential trial. The first scan was after 12 weeks of Nivo, the second scan was after 12 weeks of ipi, and now scans are every 8 weeks. I have a friend whose scans in his trial have been every 8 weeks for the whole trial. I think between 8 and 12 weeks is probably the norm.
Brian
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- April 3, 2014 at 1:07 am
Chris,
The trial I'm on is a PD-1 and Ipi sequential trial. The first scan was after 12 weeks of Nivo, the second scan was after 12 weeks of ipi, and now scans are every 8 weeks. I have a friend whose scans in his trial have been every 8 weeks for the whole trial. I think between 8 and 12 weeks is probably the norm.
Brian
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- April 3, 2014 at 1:07 am
Chris,
The trial I'm on is a PD-1 and Ipi sequential trial. The first scan was after 12 weeks of Nivo, the second scan was after 12 weeks of ipi, and now scans are every 8 weeks. I have a friend whose scans in his trial have been every 8 weeks for the whole trial. I think between 8 and 12 weeks is probably the norm.
Brian
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- April 5, 2014 at 1:36 pm
Chris,
I have definitely responded to the PD-1. At this time it looks like I wasn't a Ipi responder but as you probably know it can take some time for Ipi to work.
After 12 weeks of nivo my 2 tumors showed about 50% reduction. Next I did 12 weeks of Ipi and after that the 2 tumors were mostly unchanged but there were new mets in my lungs. I then went back to nivo and after 8 weeks the 2 tumors were again stable and the lung mets were mostly gone but there is "possibly" new disease in my small intestines (site of original resected melanoma). I have a petscan Tuesday to look at this new problem area. If that turns out to be nothing then I'm hoping the nivo will continue to work it's magic for a long time to come. If it is something then it may be time to find a new treatment. Never a dull moment with this stuff is there!
Brian
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- April 5, 2014 at 1:36 pm
Chris,
I have definitely responded to the PD-1. At this time it looks like I wasn't a Ipi responder but as you probably know it can take some time for Ipi to work.
After 12 weeks of nivo my 2 tumors showed about 50% reduction. Next I did 12 weeks of Ipi and after that the 2 tumors were mostly unchanged but there were new mets in my lungs. I then went back to nivo and after 8 weeks the 2 tumors were again stable and the lung mets were mostly gone but there is "possibly" new disease in my small intestines (site of original resected melanoma). I have a petscan Tuesday to look at this new problem area. If that turns out to be nothing then I'm hoping the nivo will continue to work it's magic for a long time to come. If it is something then it may be time to find a new treatment. Never a dull moment with this stuff is there!
Brian
-
- April 5, 2014 at 1:36 pm
Chris,
I have definitely responded to the PD-1. At this time it looks like I wasn't a Ipi responder but as you probably know it can take some time for Ipi to work.
After 12 weeks of nivo my 2 tumors showed about 50% reduction. Next I did 12 weeks of Ipi and after that the 2 tumors were mostly unchanged but there were new mets in my lungs. I then went back to nivo and after 8 weeks the 2 tumors were again stable and the lung mets were mostly gone but there is "possibly" new disease in my small intestines (site of original resected melanoma). I have a petscan Tuesday to look at this new problem area. If that turns out to be nothing then I'm hoping the nivo will continue to work it's magic for a long time to come. If it is something then it may be time to find a new treatment. Never a dull moment with this stuff is there!
Brian
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- April 2, 2014 at 7:14 pm
Hi Brian,
Thanks for your response. Confirms my impression that there is more exchange at mpip than at mif. Maybe this is also because the forum there is split up into different diagnoses and subtopics. I find Catherine Polle's postings very informative.
I am also hoping that I will see an improvement on those scans? The first ones are schduled for mid May so 12 weeks aft begin of treatment. Is 12 weeks a normal interval for those scans in that stage pf melanoma?
thanks,
c
-
- April 2, 2014 at 7:14 pm
Hi Brian,
Thanks for your response. Confirms my impression that there is more exchange at mpip than at mif. Maybe this is also because the forum there is split up into different diagnoses and subtopics. I find Catherine Polle's postings very informative.
I am also hoping that I will see an improvement on those scans? The first ones are schduled for mid May so 12 weeks aft begin of treatment. Is 12 weeks a normal interval for those scans in that stage pf melanoma?
thanks,
c
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Tagged: cutaneous melanoma
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