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May 30, 2016 at 11:38 am #22875
I will be again attending the American Society of Clinical ONcology meeting, possibly the largest in the world. Since MIF is about YOU, please send me or post here any questions you have about melanoma therapies or related questions so I can ask the experts I run into. I tend to stick to the poster sessions and hallways/bus to get the scoop on things. Most of the lectures are preset and the best info is from questions asked. So ask away, and I hope I can find answers for you.May 30, 2016 at 3:10 pm #68984AnonymousGuest
You’re amazing Catherine. Yeah, I can imagine the real news and juicy stuff comes from the hallway conversations.
I can come back to my usual questions:
Now that the immunotherapies have been deployed for sometime, are there any differences in the response rates using them for mucosal, ocular, or other types of melanoma?
What’s the latest for the stage IIC and stage III patients in terms of adjuvant therapies as some data should start showing up now?
JeffJune 2, 2016 at 7:52 am #68985
– switching from BRAF+MEK to immuno
– rechallenge BRAF+MEK
– plateau of BRAF+MEK that stay on long or indefinite
– long term damage of BRAF+MEKJune 2, 2016 at 11:12 am #68986
Good questions. For the BRAF/Mek do you mean the timing for switching. I am not sure if we will have long term data on its use since it hasn’t been around quite long enough. But again, will be checking these things out. I actually learn more at the smaller meetings but we shall see!June 2, 2016 at 5:31 pm #68987msue5Participant Should I be worried about Radiation? PET Scan every 3 months since June 2010
plus 4 weeks of radiation and also Cyberknife to neck.
I know about pseudo progression in known tumors with Ipi and Anti PD1 but on Ipi all of neck nodes swelled and also multiple nodes in Pelvic region. These areas did not have Melanoma. Now with Nivo have 2 new swollen nodes in neck. Have any of them encountered this?
Mary SueJune 2, 2016 at 10:51 pm #68988HeidiZParticipant
I’ve read that Yervoy can cause pigment changes in skin and some patients develop white eyebrows and then white hair. It appears as a good sign to those patients that drug is working. Since the combo came out of nivo/ippi do we know of any patients who have been experiencing any of these signs as well. I recently completed the four combo doses and recently noticed a tuff of white hair growing out from my scalp near my scar where melanoma can still be seen in the surrounding soft tissue. Thanks
HeidiJune 3, 2016 at 2:02 pm #68989
I was on Keytruda and had to stop at the end of January due to side effects. Heidi, I also have hair whitening — eyebrows, scalp, nose, arms, etc. — and in places, my skin looks like a palomino, despite the use of 70 spf sunscreen. But the BIG problem is the mouth sores, tongue blisters and lip blisters (bleeding) I’ve suffered with for five months. How long will this last????? It appears the oncologist is stumped by this and offers no good answers. (Using a steroid swish and swallow now because this junk grows down my throat.) How do I go about switching to another hospital and find a good referral doc who specializes in oral side effects from treatment? I realize dealing with the melanoma is the name of the game but I am so weary of this. How do I know something serious is not going on and slipping through the cracks???? BTW, waiting for call back from onc about a specialist here. She’s not good on call backs.June 3, 2016 at 3:44 pm #68990HeidiZParticipant
Sorry to hear about all the side effects your experiencing but how have your scans looked. Are you seeing any improvement. Definitely try and see another melanoma specialist at a top institution for second opinion. You shouldn’t have to suffer through all that pain. Im a little worried now because I’m starting Keytruda in a couple of weeks.
HeidiJune 3, 2016 at 3:49 pm #68991
You definitely need to get some help on the mouth issue. Be a squeaky wheel, maybe an ENT could help or even a derm if the onc isn’t getting back. Be sure to look back on this forum as many reported this and their solutions. Hope it gets better soon!June 3, 2016 at 4:17 pm #68992 what is the best dosis of ipi when combined with anti pd1?
does the different of schedule of nivo and of pembro differ in respone/PFS?June 3, 2016 at 4:50 pm #68993
Oncologist and dermatologist are off to this same conference this weekend and beyond. Thus, no response expected AGAIN. If you see her, Catherine, and you know who I mean, you can give her a kick in the pants for me.June 3, 2016 at 8:47 pm #68994 Hi Heidi,
Just to ease your mind, the Keytruda did make a difference in the scans. Some lung nodules disappeared, others got smaller and there was nothing new. Treatment suspended after 5 infusions, I think. Next scan in July. Good luck to you!June 4, 2016 at 3:17 pm #68995
– anti-pd1 or ipi/nivo rechallangeJune 4, 2016 at 3:18 pm #68996 – pembro after nivo or nivo after pembro
– one of the other afterwards WITH ipiJune 5, 2016 at 3:34 pm #68997
Not much to get excited about yet. I will weigh in with our doctors and see what they think. Combinations of immunotherapy are of course very exciting, and one that came up that is new but seems to mitigate some of the IPI side effects has the name of Ox 40. Stay tuned..
The posters about the ipi/nivo combo toxicity were alarming to me with such high percentage of toxicity. I plan to review all to be accurate.
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