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  • in reply to: My sister’s journey #66599

    sister had a check up last week. all good, all good. Here some of the things we discussed, for what it’s worth.

    – changing protocol of the combi-d study: we settle on 4 months instead of 3 now and instead of the new required 6 months

    – 5 years dab/tram. sister asked about stopping again. we will wait until ASCO updates but will have new discussion about switching to immuno. He would switch to Pembro. Switch, not add? He would not risk having the SE of the triple combo in the case of my sister. Why pembro and not ipi/nivo? Again not risking SE and OS is equal. He also stated that if you switch before resistance and the immuno does not 100% what you want it to do, you will have 100% response again on targeted AND have benefit of the immuno. (He said: people who go on or go back to targeted after immuno ALWAYS benefit) + that a lot people develop later SE on targeted. He would do pembro for one year.

    (and a lot of other things but was falling sick so wasn’t as active as other times, will try to remember)

    As said, we will wait for ASCO, also maybe for ESMO (I might trow in that we should wait for IDO updates) to have a conversation again about switching.

    in reply to: My sister’s journey #66598

    thank you…

    in reply to: My sister’s journey #66596


    Nephew of my partner just died of melanoma.

    Melanoma attacked our family at both sides.

    He was just 40 and celebrated the first birthday of his daughter 2 weeks ago…


    in reply to: Keytruda followed by IPI/NOVO #70023

    MathewR wrote:

    I’ve had a good result-stable or better-with ipi/novo after failing Keytruda. In a small study, MSK found that 20 percent of patients that failed PD-1 benefit from ipi/nivo.

    hey matthew, do you have a source for this?


    in reply to: My sister’s journey #66595

    Full body MRI: all clear.

    in reply to: Switching from B/M to immuno?!! #70067

    thank you so very much Catherine!

    in reply to your question

    she can do anything she wants: go out, work, go working out, do her household, … .

    but can she be happy? No.

    Of course that isn’t all down to the pills but it plays a huge part in it…

    in reply to: Switching from B/M to immuno?!! #70064

    of course we are lucky to still be on a working therapy

    But the ultimate goal is still to some day be of treatment all together. And we know that can happen with immuno.

    Plus being on the treatment so long is a mindbreaker. Psychologically seen her QoL isn’t that high as medically seen. Yes she’s had medication (we all know how that worked out) and therapy.

    I wanted to email Flaherty but couldn’t find his email…

    in reply to: Switching from B/M to immuno?!! #70062

    ° situation

    sister, 32, on dabrafenib/trametinib combination for 4 years now.

    Started with numerous tumorsites and high LHD.

    First spectacular remission of tumors, slowly went to NED (no evidence of disease)

    NED for about 2 years now.

    Little to none side effects.

    ° dilemma

    switching from targeted to immuno

    I’ve send some email to Long, Davies, Ottenscheimer, Ribas, Weber, Luke, Robert amongst others regarding this issue.

    Not all have responded but a few opinions i got i can share, maybe someone is in the same situation. Mind you, these are opinions and experiences, not a medicale advice and specifically for the situation of my sister.

    Nothing new: there is no answer. Ha! So warning: a lot of ‘don’t know’-s and no answers, mainly thoughts…

    First there are was one suggesting that the c-word might still be on the table for these patients, even when stopped with treatment. But we’ve seen recently the small study that makes very little few try to stop treatment (small study but 100% relapse.) (

    So ruling out that option. Although countering that, I do know some stage 4 patients who HAVE stopped targeted and are still NED without treatment. Our hospital only had 2 persons to stop, one had a relapse and now struggling for any treatment to work. The other is still NED and without treatment but she “only” had several melanomas (so skin only). So there might be a small small truth in it, we don’t know but still we are ruling it out as an option.

    All of whom replied have patients like my sister. In these cases NOBODY switches unless there is reason to switch. If you tolerate the treatment well, why switch? “You KNOW she is doing well. You DO NOT know how she’ll do on immuno.”

    If she switches now her changes are about 30% on mono. And 50% on the ipi/nivo combo but with the high chance of toxicity coming with that. And chances of toxicity tend to be slighly higher with no measurable disease so it seems.

    Hmm. so is having no measurable disease any factor?

    I think we can all agree that not being able to measure is a hick up for truly knowing if it’s working. And knowing when enough is enough. Of course clear scans but as one suggest we might also have clear scans on/after targeted that doesn’t mean it’s working. If there is no melanoma left, she is ‘safe’ anyway. If there are still melanoma cells left, it wouldn’t matter if they light up on a scan or not one wrote.

    The question following from that is: does it make my sister fall into the adjuvant treatment? If so, we only have data on ipi 10mg/kg that seems to make a difference but that again comes with high toxicity.

    Patients that HAVE been transferred were due to progression or heavy side effects.

    Some do well, some did. The ones not responding well were the ones with aggressive and sympthomatic disease.

    The only patients that received fantastic and/or CR after progression all received ipi/nivo. So as one stated: “I am much less anxious than in the past about waiting therefore.”

    The long responding patients remaining on treatment are carefully watched and get switched at the first HINT of progression. Unless they have a personal question to switch “as it is likely they will respond to the pills again after a break and if immunotherapy does not turn out to be useful”.

    Well, it remains an issue that we are torn about. Still, everyone who replied stated they don’t switch in the case of my sister. We were slighty worried about running out of time but Long stated that the PFS between 4 and 5 years are the same so we have some time left to decide i think. Maybe we’ll wait, maybe we won’t. I’m having my thumbs up for the combinations of IDO for example. Maybe we can wait for those to come out?

    With these opinion we surely have a good talk ahead with our onc team. Not easy. And i know it’s a luxury position, we are thankful but as our friend Kay said: “it’s being free of treatment, that’s the goal.” So we are going for that.

    If more people reply, i’m gonna add asap!

    in reply to: My sister’s journey #66593

    what a hell the past days it has been.

    GP believes my sister suffered a psychosis.

    She developed conspiracy ideas on monday/tuesday, believed she was wired by her boyfriend and ex-boyfriend, saw camera’s everywhere, saw wires move and door knobs moving, panic attacks, aggression, …

    turns out she accidentally overdosed on her clozan

    she takes clozan (a benzodiazepine) before she goes to sleep. her anxiety of course rose higher last months so she started taking it during the day. and more and more. she mentioned today she takes up to 4 (!!!!!) at a time, at different stages during the day. you are only allowed 2 – 3 A DAY! So she OVERDOSED most of the days… overdose effects are Impatience, agitation, irritability,

    Aggressiveness, delusions, rage attacks, nightmares, hallucinations, psychoses, inappropriate behavior, confusion, memory and personality disorders and paranoid symptoms…

    so all what we’ve experienced where in there

    i thought 4 at a time!!!??? so i looked up the leaflet and read all this

    GP said she was very very very very very lucky to not killed herself or harmed herself or anyone and that she didn’t stay in the psychosis

    she now is back to her own self, had a ‘hangover’ last 2 days

    call onc on monday

    in reply to: In Phase III, should be approved new combo #70050

    i’m thinking of waiting for this one to come available

    maybe then is the best time to switch

    in reply to: Switching from B/M to immuno?!! #70060

    I do trust Bart also, don’t get me wrong.

    But like you said: no data yet so there are as many OPINIONS on this matter as there are oncologists…

    in reply to: Switching from B/M to immuno?!! #70058

    Hi Catherine,

    Neyns is our oncologist.

    According to his experience and a recent study: (100% relapse) he would not stop treatment all together.

    We started out with high LDH and numerous tumor sites. After starting pills we had normal LDH and explosive first reduction and then gradually went over to a complete response. LDH are always too LOW nowadays actually. So not ur typical complete responder.

    Yes, we also thought about QoL, which is good now but Neyns is adamant that with the plateau on the inhibitors curves lowers every year that EVERYONE will get resistance. If she get resistant and then transfer it could be worse and/or more complicated.

    Hunt for more experience would be amazing, thank you, we are torn!

    in reply to: My letter published in the Philly Inquirer tomorrow #70056

    congratulations Catherine!

    in reply to: My sister’s journey #66592

    So hey baaaaaaack to the million dollar question. My sister feels her body and mind are a bit worn out with the B/M inhibitors (4 years already – NED – little to none side effects) and is considering switching to anti-pd1. We had a talk this morning with the assistent. She believes prof. Neyns is all in favor about switching now but is just waiting for my sister to bring it up herself. They would switch now. We are gonna wait for the full body mri end of August and then will have the final talk. I’m afraid of side effects (she now has none) coming with IT and of the contamination of resistance talked about by Ribas. Who says she will not be resistant to B/M after switching? I know, I know: we. don’t. know. At ASCO we had one session saying: don’t switch and another one: switch before resistance. So any thoughts and suggestions, experiences more than welcome. (again I know I’m sorry but we are torn)

    in reply to: My sister’s journey #66591

    buffcody wrote:

    Maybe I haven’t been on the Forum long enough or just lack a memory, but what is the meaning of the acronyms TT and IT? Frank

    TT = targeted therapy (braf/mek inhibitors)

    IT = immuno therapy (ipi, nivo, pembro)

Viewing 15 posts - 1 through 15 (of 251 total)