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October 26, 2013 at 4:02 pm #21643
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.
His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn’t seem to have a high % of success with brain mets, or am I misinformed.
Its very tough as we have had not much success in any area.
Any suggestions or positive experiences could really help at this point.
AnnaOctober 26, 2013 at 5:40 pm #62835Catherine PooleKeymaster
There really isn’t any agent that has been proven to cross the blood brain barrier, although temodar was once thought to do so. It is an oral form of dacarbazine which is a chemo for melanoma that has low response rate. There was some activity with the braf/mek combo in the brain in a small subset of patients. But if he isn’t responding to zelboraf I’m uncertain he would respond to the GSK version with mek which I believe is approved in Canada. You might want to consider the PD1 trials that are in Canada but his brain mets would need to be stable. I’m sure this is frustrating to you both. IPI could provide a response, it is better than temodar probably. I’m sorry I don’t have better options but perhaps you can discuss further with your doctor. Zelboraf normally has an effect pretty early on, the first couple of weeks.October 26, 2013 at 8:28 pm #62836 Thanks for replying.
That is disappointing as all the reports past and present say that it does although response rate is low.
We can’t do PD1 trail as his performance status has gone downhill lately.
Yes its very frustrating and worrying.
AnnaNovember 6, 2013 at 10:07 pm #62837
Do you know of any PD1 trials on BC?
AnnaNovember 7, 2013 at 1:03 am #62838Catherine PooleKeymaster
I don’t, but I would check with the BC Cancer Agency. Here is the list I have for IPI naïve in Canada with contacts: McWhirter, Elaine Hamilton 9053879495 email@example.com
Miller, Wilson Montreal 5143408222
Petrella, Teresa Toronto 4164805248
Butler, Marcus Toronto, 41694645014628
firstname.lastname@example.orgNovember 7, 2013 at 1:06 am #62839 Thank you so much.
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