New Stage 4 journey

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.

Re: New Stage 4 journey

Postby Catherine Poole » Thu Apr 06, 2017 8:12 am

LDH is a good indicator to watch! Hope it continues to drop for you.
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Re: New Stage 4 journey

Postby David_McCaw » Mon Apr 10, 2017 9:12 pm

no more compassionate mek inhibitor, 21 days. It is only covered as a combo with zelboraf, not as as a mono as Cobimetinib.( my braf k601n ). Now, I must fight the melanoma without any assistance until i get into Tils or other trial. Time to clean my lungs and liver. Back to running, skiing , cycling, hiking and eating well

David
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Re: New Stage 4 journey

Postby Catherine Poole » Tue Apr 11, 2017 8:19 am

David,
I thought that the other braf combo, mekinist/taflinar was approved in Canada? I would keep an eye on your LDH and hope you are feeling fine otherwise. Here is an article: http://www.prnewswire.com/news-releases ... 36301.html
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Re: New Stage 4 journey

Postby David_McCaw » Tue Apr 11, 2017 3:54 pm

I am non v600. The novartis mek is approved in Canada for Braf v600. I have k601n, i will watch the ldh, thanks for article, David
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Re: New Stage 4 journey

Postby Catherine Poole » Wed Apr 12, 2017 7:45 am

So sorry, I didn't read more carefully. But you might try Novartis to see if you can get the Mekinist drug.. hope your LDH stays low!
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Re: New Stage 4 journey

Postby David_McCaw » Sat Apr 22, 2017 6:33 am

The ldh dropped again to 257 on apr. 20. The lowest in 3 months. The trend is good, 3/16 - 408, 3/31- 319, 4/20 -257
the Cobimetinib was between 3/22 and 4/11.
I am currently on no treatment plan
Tils consult on 4/25

I exercise up to 4 hrs per day, bike, hike, run, yoga
I drink a lot of water, stretch, and enjoy life

David
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Re: New Stage 4 journey

Postby buffcody » Mon Apr 24, 2017 9:03 am

David,

You're a brave man and I admire your search for a course that will lead you to better days. I am in awe of your exercise regime with all that is going on in your life physically and psychologically. Not that I'm going to start exercising 4 hours a day or anywhere near it, but you do provide a motivation for a current loafer like myself to take more responsibility and not leave it all to the meds. Thank you and the best of fortune for you going forward. Frank
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Re: New Stage 4 journey

Postby Catherine Poole » Mon Apr 24, 2017 6:09 pm

David,
Frank is no loafer! He is a supreme swimmer who had some set backs because of this awful disease. I do hope things get better. I must correct that the MEK drug is now owned by ARRAY not Novartis. Novartis had to sell it after buying the braf/mek from GSK oncology. Hard to keep up with these things!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: New Stage 4 journey

Postby David_McCaw » Tue Nov 14, 2017 2:55 pm

update, completed Tils infusion on nov. 6. next is pembro on Nov. 28
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Re: New Stage 4 journey

Postby Catherine Poole » Wed Nov 15, 2017 8:03 am

How is your LDH and how are you feeling? I hope all goes well with the infusion.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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