BRAF-i (GSK2118436) trial update (my "imminent progression"- Farewell "stable" :)

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8/11/2011 5:02pm
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Replies: 7

I'm not really comfortable posting this result, as it's not going to be considered great news by many, but information is information. I started in April 2011 on the study, and by July was experiencing return of nodules/subq's, so knew something (not good) was going on. The news from the last follow-up and consult was not surprising to me, and most of my anxiety leading up to it related to "Is there a plan B for me?"

Progression is beginning/imminent, but the trial team feel that (and they really left this decision of where to head completely in my hands) I'm still receiving some benefit from the drug in terms of the aggressivness of the disease(and expect this benefit to last for around another 4 weeks, possibly 8- long shot)), and while I'm enjoying such good QOL with Georgia, it was up to me as to whether I'd prefer to have a bit more of that QOL, or start on Yervoy immediately (well... more or less- after a quick bit of zapping from Bob- their suggestion) before undergoing a treatment which may (or may not) result in more serious side effects. They don't want me to start Yervoy with an obvious progression and increased tumour burden- they prefer me (as do I) to commence it with the smallest tumour burden possible... so now I get to do the juggle ("watch carefully, and wait)") Yes, leaving it to the patient is good in a way (as only I can rate my importance of, and degree of QOL), but it's a big call when you're relying on symptoms of progression to change your treatment (or timing) Sometimes things need to progress to a considerable degree before symptoms even appear... So I had to warn my GP of the possibility of irritating tests from me about miniscule issues- to which he responded while he here today when he dropped over, that I can text as much as I won't. It won't be a bother to him.

One of the lesions they removed last time in dermatology had the path come back as an SCC . So I had to have a wider margin removed. Of course it HAD to be the obvious one on the eyebrow- currently I look like constantly surprised on one side of the face :D At least it's the usual eye I have raised for various reasons- downside of that is, it's ouchy whenever I show any expression. I should have demanded botox for the other side to even it out :P  He tells me it will drop with time! It Needs to drop back in a BIG hurry. Should at least look better without the stitches hanging out of them. A bit... I hope! (I had 3 other shave biopsies too- they're being very cautious since the SCC path came back)

I read the reports from the scans which basically looked fine, but knew full well that scan reports for studies aren't necessarily as comprehensive as one done for standard care- they concentrate on their chosen target lesions, and if something falls within the bounds of their trial specific criteria (re:RECIST), they may simply choose not to mention in the actual report, as they aren't relevant to the trial. They also compare back to the baseline scans, and when you've shown over 50 mets on that, then everything under looks pretty in their book. I.e. a few popping up here or there is still considered stable. Same for extracranial subq's.

Hence why the trial team consider progression imminent, but are happy for me to remain on the study for the moment, at my own discretion, but with close monitoring by me and consultation with them.

Overall, I'm pretty happy with my decision. It maximises my QTG (Quality Time with Georgia) - always my main consideration.  I'm confident I've made the right choice for me, but there is trepidation that I will mess up the timing of the 'swap over' of treatment. But I'll just have to trust that the good judgement that has kept me hanging around for the past 3+ years, will continue (not to mention the luck involved :D).

Sometimes I think mel treatment is akin to using stepping stones to cross a raging torrent, constantly hoping researchers are far enough ahead of us to place the next stone in the right place, to keep us moving forward?

Another bonus is that the Yervoy will be provided as "compassionate use". And my previous, (THEY failed ME) chemo attempts, means I can swap treatment when I'm ready without having to take into account the time spent undergoing another chemo. AND they trust my GP enough to monitor for side effects, after their previous contact with him- so I won't be shafted onto yet another (pffft) visiting Onc, nor will I have to hang around in Sydney- they were deal breakers. Hooray- believe me, that was among the first things I wanted to discuss. He's been more proactive than 100% of Onc's I've had in the past 3+ years, until my most recent experiences with the main 2 involved with this study.

So I'm embarking on yet another new adventure- at least there is one to embark on, I reckon :D Meanwhile, roll on... it's "girl's night" with my baby tonight, so the rest of what's going on in life takes a big, fat back seat. As it should.

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

Well Nic   time with Georgia always will beat out anything.  Even though my babies are 35 and 31 any time spent with them is precious (as it should always be)  I won't feed rabid monkeys either.

As you stated,  information that you so generously provide us all, is great.  I know some folks here, will now at least have an idea of which way maybe they should go. 

 

Bonnie Lea

Hang in There

Nic,

You sound like you have a good plan, so enjoy time with your baby now so you can fight the beast when you're ready.  You are in my prayers for successful treatments...you go girl!

Tricia

Nic,

We'll call time with G as plan B. That means you already have a plan C lined up!  Enjoy your girls night out and think tomorrow on what you want to do next.  Glad they have made it a bit easier with your GP being able to follow up on you and to be part of the team.

As long as there is  a plan for the future in place there is hope! 

Linda

Dear NicOz,

I love your outlook, and I especially appreciate your analogy of the stepping stones/raging river!

Sincerely,

Cristy, Stage IV

Getter done!

Hi Nick,

Good luck on the next treatment. Coincidentally I am on the same trial as you are, I'm actually at Westmead now for my first round of monthly scans. I would even guess that the same neurosurgeon did both of our craniotomies! Small (melanoma) world. I'd be very interested to hear how you go, I hope things go as smoothly as possible.

Good luck!
Ben.

Hi Ben, is your neuro from Westmead? I'm not a huge fan of there. I prefer my much adored Prince of Wales, but as there isn't a melanoma centre there, I had to make the move to get on the trial. The Onc's are fine but generally it's far from my favourite place. My neuro is Bernie Kwok at POWH, and an utter legend in my eyes, and the main reason I'm here today :)  Hope all goes well for you!

Cheers,

Nic

Meh. Get on with it.

Do not feed rabid monkeys.

To fear is one thing. To let fear grab you by the tail and swing you around is another

Hi Nic,

Actually the neurosurgeon I've been seeing is Dr. Shivalingham, based near RPA. She is amazing and has my full confidence. I too have started seeing Dr. Long at Westmead, I was previously seeing the people at RPA, though had to move hospitals for the trial.

Just finished my scans. I am getting sick of drinking barium sulfate!

Good luck,
Ben.