@love4life
Forum Replies Created
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- January 20, 2014 at 11:11 pm
I must admit that when I found out last January that my melanoma had spread to my liver among a couple of other sites I felt my hope slowly diminishing. Now, a year later my tumours have all shrunk In my liver so much so that they can't be measured. I'm on Zelboraf (Vemurafinib) and everything has remained stable. I was told 4years ago when I was first diagnosed with brain mets that my prognosis wasn't good but here we are! This disease is so different for each individual that you never know where your path will lead. I have heard that there have been great results with pd-1. Good luck with your treatment!
Natalie
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- January 20, 2014 at 11:11 pm
I must admit that when I found out last January that my melanoma had spread to my liver among a couple of other sites I felt my hope slowly diminishing. Now, a year later my tumours have all shrunk In my liver so much so that they can't be measured. I'm on Zelboraf (Vemurafinib) and everything has remained stable. I was told 4years ago when I was first diagnosed with brain mets that my prognosis wasn't good but here we are! This disease is so different for each individual that you never know where your path will lead. I have heard that there have been great results with pd-1. Good luck with your treatment!
Natalie
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- January 20, 2014 at 11:11 pm
I must admit that when I found out last January that my melanoma had spread to my liver among a couple of other sites I felt my hope slowly diminishing. Now, a year later my tumours have all shrunk In my liver so much so that they can't be measured. I'm on Zelboraf (Vemurafinib) and everything has remained stable. I was told 4years ago when I was first diagnosed with brain mets that my prognosis wasn't good but here we are! This disease is so different for each individual that you never know where your path will lead. I have heard that there have been great results with pd-1. Good luck with your treatment!
Natalie
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- April 7, 2012 at 2:17 pm
Hi Elaine,
I have had brain and lung mets since 2009 and am also going for gamma knife (this week) for another tumour which was found in my brain. I had a craniotomy in 2009 and gamma knife following and had no more tumours in the brain for the past two years. I asked my doctor about Temodor when I was in last week but he said it wasn't an option for me. Not sure why not so I will be looking into that further. Gamma Knife really is a powerful tool against brain mets and I figure that if I have to go for that every couple of years then so be it. Keep your strong faith!
Good luck with everything and I will be thinking of you.
Take care,
Natalie
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- April 7, 2012 at 2:17 pm
Hi Elaine,
I have had brain and lung mets since 2009 and am also going for gamma knife (this week) for another tumour which was found in my brain. I had a craniotomy in 2009 and gamma knife following and had no more tumours in the brain for the past two years. I asked my doctor about Temodor when I was in last week but he said it wasn't an option for me. Not sure why not so I will be looking into that further. Gamma Knife really is a powerful tool against brain mets and I figure that if I have to go for that every couple of years then so be it. Keep your strong faith!
Good luck with everything and I will be thinking of you.
Take care,
Natalie
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- April 7, 2012 at 2:17 pm
Hi Elaine,
I have had brain and lung mets since 2009 and am also going for gamma knife (this week) for another tumour which was found in my brain. I had a craniotomy in 2009 and gamma knife following and had no more tumours in the brain for the past two years. I asked my doctor about Temodor when I was in last week but he said it wasn't an option for me. Not sure why not so I will be looking into that further. Gamma Knife really is a powerful tool against brain mets and I figure that if I have to go for that every couple of years then so be it. Keep your strong faith!
Good luck with everything and I will be thinking of you.
Take care,
Natalie
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- January 21, 2014 at 12:08 am
Thanks so much for your reply. It's nice to hear that it's working well for you. I know what you mean about the sun sensitivity! I was getting burns sitting in the shade completely covered this summer. The trametinib is not yet approved here in canada. They are finishing up with the clinical trials shortly last I heard. I was excluded from that trial last February because of a few new brain mets. I would much prefer the combo.
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- January 21, 2014 at 12:08 am
Thanks so much for your reply. It's nice to hear that it's working well for you. I know what you mean about the sun sensitivity! I was getting burns sitting in the shade completely covered this summer. The trametinib is not yet approved here in canada. They are finishing up with the clinical trials shortly last I heard. I was excluded from that trial last February because of a few new brain mets. I would much prefer the combo.
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- January 21, 2014 at 12:08 am
Thanks so much for your reply. It's nice to hear that it's working well for you. I know what you mean about the sun sensitivity! I was getting burns sitting in the shade completely covered this summer. The trametinib is not yet approved here in canada. They are finishing up with the clinical trials shortly last I heard. I was excluded from that trial last February because of a few new brain mets. I would much prefer the combo.
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- April 5, 2011 at 12:40 pm
Hi Amanda,
Good luck with your PET scan this week. How are you finding the Temodar? Are there alot of side effects? We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife. I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.
You are right about it being overwhelming.
Natalie
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- April 5, 2011 at 12:40 pm
Hi Amanda,
Good luck with your PET scan this week. How are you finding the Temodar? Are there alot of side effects? We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife. I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.
You are right about it being overwhelming.
Natalie
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- April 3, 2011 at 6:51 pm
Hi there,
Here's the timeline for how my treatment has gone up until now…
May/June 2001 – melanoma removed and wide excision done of skin on my left temple
December 15, 2009 – fist sized tumour removed by craniotomy – was shocked to find out that it was melanoma after 9 years
January 28, 2010 – Gamma Knife
February 2010 – started Interferon
June 1, 2010 – lung resection for a 7 mm melanoma mets
July 2010 – started back on the Interferon. Was able to pick up treatment where I left off because the lung lesion had been there on my initial scans in January 2010 and they had been watching it; therefore not a new spot
Presently, no new mets and clear of disease according to my recent scans (brain MRI and CT's). I will be going for a whole whack of scans when I am finished the Interferon and will be monitored by my Dr. every 3 months.
I feel well other than the Interferon hangover and will be so relieved to have this done next month.
Thanks for your response!
Natalie
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