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November 25, 2014 at 2:06 pm #22254gostanParticipant
I wanted to wish everyone a Happy Thanksgiving. You all have helped me to get through the past 18 months. Last TDay I was released from the hospital on TDay eve after the first of three eight day stays. Today, I am still on Braf/Mek with no further progression. Someo ofyou may remember that I am an avid skier. After taking last season off,I am back at it with two days in already. Sure, I am at 1/2 speed, but what a difference a year makes. My family and I have so much to be thankful for.November 25, 2014 at 3:28 pm #65879Catherine PooleKeymaster It is so good to hear from you! And wonderful news about your health too. Happy Skiing, we’re supposed to get a few inches tomorrow which I can do without, but it may make you happy! I am so thankful to meet such wonderful people as those who come to our forum!November 25, 2014 at 3:46 pm #65880cherisParticipant Happy Thanksgiving, Stan,
I wish you continued success. I think my next step will be Braf/Mek. Can you please give me some info on it? Infustion schedule, side effects, scan/progression? Thanks.
CherisNovember 25, 2014 at 7:01 pm #65881Catherine PooleKeymaster
The BRAF/Mek combo is in oral form, they are pills that you take daily. Scans, etc, will be scheduled by your doctor as they deem necessary. I hope it works out for you.November 26, 2014 at 11:55 am #65882gostanParticipant
I have been on the Brak/Mek pills targeted therapy for 7 + months. Once we got the doseage correct, it has been a very straight forward therapy. I still see Dr. Hodi every 30 days and he has continued my CT & Brain scans every 60 days. I understand that the scan schedule is pretty conservative but his bag of tricks has worked out well for me to date even though I still complain to him about still being on Levenox after 9 months.
We are expecting 5-8 inches of snow here West of Boston. It should be over by the time our local guests, 18 in total, have to drive to our Thanksgiving celebration on Thursday.
Enjoy being with your family & friends and thanks,November 26, 2014 at 9:14 pm #65883MathewRParticipant
I hate to type this because I feel like I’m jinxing myself–but I’ve been on Tafinlar & Mekinist for 16 months. Minor side effects; feel great. I’m scanned every 8-10 weeks and I always insist on including the head/neck MRI. Good luck and Happy Thanksgiving to all.November 27, 2014 at 5:26 am #65884LesliParticipant Dear Fellow Forum Friends,
I am just returned from a fabulous week in NYC, a city which one year ago today I thought I would never see again. In fact, my fixation of my grief on that issue was therapy worthy! Last Thanksgiving saw me with Zelboraf enduced mouth blisters, interest in neither Turkey or shoppers’ antics and a deep sense of dread that I tried (with a range of success) to keep to myself. I am so thankful to you all for helping to keep me abreast of treatment options and knowledge about the pipeline of choices on the horizon. A treatment plan, an arsenal of research/information and a glimmer of blue sky brought me back in the game. Tumors in bone, organs and brain are all shrinking on Ipi. We plan to eat pumpkin pie all weekend.
Go Stan,Go Mathew, Go Catherine, Go Frank, Go Joe, Go Celeste, Go Jonathon, Go Rick’s wife, Go Martha, Go Brian, Go Cheris, Go Kyle, Go Shane, Go Jolly Simon, Go Steven and Go all the other tenacious and bold people who are facing melanoma treatment. I am grateful for you, the research that has come before us, the current research in which we engage, and for the generosity of so many healthcare providers. Life is sweet. Thank you for making it even better. LeslieNovember 27, 2014 at 4:11 pm #65885rochelleParticipant
I would like to wish everyone a wonderful Thanksgiving as well!! I am a bit reserved when sharing with the general public what I am grateful for, but I am sure most of us can relate to being indescribably grateful for the brilliance of medicine…but I am humbly thankful for the people in my life who don’t even know that they make my life with melanoma a bit easier. I’d like to mention a few…the girl who cuts and colors my hair…with all my unsightly lumps, bumps and surgical scars…she doesn’t flinch when she does my hair…the woman who mans the ticket booth at the train station I park at to get into NYC. That woman is pleasant no matter what..she makes my day a bit brighter. Jill at my opthamalogists office…some of the melanoma I have is visible around the left side of my face…I feel confident shopping for glasses with her…she knows the story…so I don’t have to rewrite history.
Those are enough examples…there are many more lovely folks in my life who help me feel ok about myself..I silently thank them..
Now if I could only be so grateful for the 8 inches of snow still on my driveway…
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