Forum Replies Created
I haven’t been overly sensitive to the sun which has been nice over the summer. Dick_K are you sure you had PET CT scans?
Cancer cells works on a fermentation process to create energy and therefore use a lot of sugar to grow. PET scans inject radioactive glucose and then scan to check where the body is absorbing the most sugar. As far as I know the BRAF meds stop the sugar uptake process and so they are typically not useful.
Whoops, I read that wrong on the fist pass, selumetinib is a different MEK inhibitor that Novartis is testing. Congrats Pieter on the surgery. I’m glad to hear that it’s working for you.
So it seems that Novartis has named their BRAF Selumetinib:
The results are pretty cool in that there was at least a basic response in 100% of patients so far in this trial. Granted they are selective about who they let into phase I so the results are always a little skewed. However, they are planning to get a phase III going by the end of 2013 as it has been fast-tracked.
My scans came back and I’m still steadily shrinking, I’m down to 68% of my baseline last November ans still going!!!
I’m still on the meds, just went in for a scan today so we’ll see next week where we’re at. At the last scan the meds were still working and the tumors were still shrinking.
At this point I’m doing fairly well, I have noticed that I’ve been getting more fatigued and also that I get sore after very little strenuous exercise and that it seems to last longer than I would expect. I’ve also been getting colds frequently which is odd but to be expected as one of the listed side effects was a slightly suppressed immune system.
I’m still just bumping along hoping to leave this part of my life behind me.
Melanoma is different from other cancers. Most of the information that you will read about cancer diets online will tell you to become a strict vegetarian/vegan and while this is “mostly” true for people with breast cancer it’s not necessarily for people with Melanoma. I did a lot of research into diet when I was first diagnosed and most all of the “miracle cure” diet approaches were blanket “this will cure cancer” methods, but if melanoma were like other cancers then it would probably respond to treatments for other cancers, right?
I tried an all vegan diet and from experience I can say that my body didn’t like it. I felt weak and tired all the time and I think (no proof) that the melanoma spread faster.
My advice is to listen to your doctor… and do a lot of research specifically paying attention to advice that names melanoma. I’m not advocating for Alternative therapies but I found that Dr Gonzalez was one of the few alternative practitioners to specifically address melanoma. Mostly everybody in the Alt-Medicine/Homeopathy cancer world claims to have “the method” but everyone’s bodies are different and we are all designed to live in different parts of the world with different dietary needs.
I would suggest listening to these
Don’t think that they have a cure but listen to what they are saying and take it for what it’s worth. There is no silver bullet but that doesn’t mean that everything they suggest is wrong.
The 20 lbs was unintentional, a combination -I think- of winter and the meds changing the way my body processes food. Not the end of the world as it’s only temporary. Long story short I’ve gained 20lbs in the last 3 months and lost a lot of weight in my tumors. My eyes do weird things but it’s not that bad and I can happily say that the tumors are shrinking. I’m happy to be alive. I’m happy to have my friends. I’m happy that this drug trial is working so far. I’m hoping that this BRAF/MEK combo goes the distance and that we all have a way out. I’m hopeful. For the next month I felt like a guinea pig, test, more tests, more tests. I gave them at least 6 gallons of blood, 16 photo’s of my eyeballs and a little piece of my soul. I think my crowning achievement of that month was when they did a contrast of my eyes one day they gave me some vegetable dye contrast. They said it would turn my urine yellow… I had to go back over to Yawkey 9 after the eyem exam and I stopped by the resteroom. I thought it was hilarious when I peed radioactive neon yellow into the urinal (and it didn’t clean with a flush) right outside the cancer ward. I just wish I saw the reaction as people came in and saw that… OMG WHAT ARE THEY DOING IN 9E… I should warn you, I don’t take cancer seriously… it’s a waste of my time and it’s stupid for thinking that it could hurt me. I mean honestly if you can’t have a sense of humor then you should probably take yourself more seriously. ugh… the formatting was lost… I’ll try to fix that with the rest of the story… Got about 2 feet here in WMass. Spent a bunch of time snow blowing the driveway. The plow guy got stuck in the driveway at 3am and I had to help dig him out. He hasn’t come back to finish the job,lol.
With the little snow/freezing rain storm we got today it took me 4 hours to drive in to MGH this AM…
Subcutaneous just means under the skin. Also PET scans work by injecting radioactive sugar into the body. Tumors grow through an anaerobic process like fermentation as opposed to normal cell growth which is an oxidative process. As a result tumors use sugar as their main source of energy for this process. The PET scan looks for the places in the body that are absorbing a high amount of sugar. The sinus MET not showing up is most likely because it wasn’t growing at the time of the scan. PET scans are used mostly for staging and seeing how far it has spread throughout the body.
Good luck with the trial, I’m on a braf/mek and in only a couple of days my tumors were noticeably smaller and still shrinking.
I was told that LGX818 is the “top of the food chain” for BRAF drugs… I’ve been on Novartis LGX818 and MEK162 since Monday. Keith Flaherty is my specialist and as such I’m doing the trial through MGH. The slot in the trial opened up last Tuesday and I spent the rest of last week doing the screening tests so I feel like I’ve been going non-stop for a while.Catherine Poole wrote:
Keith Flaherty at Mass General is running this trial and it is the Novartis version of the Braf/MEK dual therapy. It certainly is a viable option for those looking at interesting trials. It has a few internaitonal locations as well:
I’ve been in that trial for 3 days now.
So far the side effects I’ve experienced are weird blurry vision that last for a few hours starting about an hour and a half after taking the LGX818 / MEK162, and the skin on my face is sensitive kind of like feeling wind burnt in the winter. In the 3 days I have already noticed a reduction in the size of my tumors.