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June 17, 2013 at 6:46 am #59119
Just an update from my side. They have done the surgery on my leg and the result was amazing. No tumor cells were found in the part they removed. I am still on the MEK162 waiting on a new scan beginning of July. Hope this will also be good. I am having some side affects. Sometimes I am getting very cold and lately I am tired. The worst part is the dry mouth and swelling of my body. Gained about 6 kg in weight mainly water. But upto now I am very happy with the results.June 19, 2013 at 3:19 am #59120
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!!!June 19, 2013 at 3:20 am #59121
Whoops, I read that wrong on the fist pass, selumetinib is a different MEK inhibitor that Novartis is testing.June 22, 2013 at 3:06 pm #59122Smithrb41Participant I’m really glad to find this. I’m screening for this same trial at Ohsu in Oregon. This is my 2nd clinical trial after 10 months on zelborafJune 27, 2013 at 8:01 pm #59123 Looks like my husband may enroll in this trial
He also has the opportunity to due the approved braf
We leaning towards the trial general question did you have sensitivity to the sun? We were told some braf drugs can cause serious burns even walkout outsideJune 28, 2013 at 7:44 am #59124
Great news. Up to now the treatment is positive for me. Also I do not encounter any sunburns although I keep a bit out of the sun. Commonly site effect is some rash. Yes, I have that too but get separate a cream for that. Furthermore in my case my body is swollen, I gained about 6 kg of weight and get easily tiered at the end of the day. For the rest no heavy site effects. I wish you good luck with the treatmentJune 28, 2013 at 8:06 pm #59125
Thank you so much!!June 28, 2013 at 8:07 pm #59126 Sorry 1 last question are you doing a combo LGX and Mek together?
Or is it 1 drugJuly 29, 2013 at 12:24 pm #59127
Sorry for my late reply. I have no combo only MEK162.
I am still taking it, and it looks like it is still working.
The last scan showed that the melanoma shrinked significant and is barely visible on the CT scan
Since a couple of days, I am having some problems with my legs. I am having muscle ache in my legs causing some walking problems. Maybe nothing to do with the MEK but one of the site effects is muscle ache.July 30, 2013 at 4:20 am #59128
I haven’t been overly sensitive to the sun which has been nice over the summer.
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