Zelboraf failed, weighing options

Posted By
Anonymous
4/22/2014 9:42pm
Activity
Replies: 7

I was diagnosed Stage IV in January and BRAF+ soon thereafter. Significant tumor load affecting all major organ systems, though I hadn't felt that anything was wrong until December. By the time I finally started treatment, I could barely walk across a room without help.  No brain mets. Getting treatment at Providence Portland.

After two months of Zelboraf, my tumor load had decreased by half and I was feeling much, much better. Soon after, I noticed what I thought was a new tumor under my scalp and then more in my neck, two new nodules near the primary, and another bump I could feel on my shoulder had started growing again. I was hoping for longer on the Zelboraf, but you get what

you get.

I've been given four options:

(1) IL-2

(2) Ipi (with intent to join an Ipi/Nivo trial as soon as the new arms open, but that could be weeks)

(3) IPI and GR-MD-02, a galectin inhibitor (Phase 1 trial, 85 days. I'd almost certainly be in on the lowest dose as it is just starting and there's no dose escalation for individuals.)

(4) Randomized trial, IL-2 with SBRT or IL-2 alone. 

All this keeping in mind that the approval of Nivomulab is imminent.

I'm scared of the IL-2, not so much of the side effects, but because I am reluctant to miss out six weeks of what could be my last summer with my kids. OTOH, I'm relatively strong right now and might not be able to tolerate it later if another treatment or treatments fail. Though the chance is small, there is still "home run" potential.

Anonymous - (4/22/2014 - 10:18pm)

What about MEK combo? It seems to have worked for some people who became resistant to Zelboraf.

 

 

 

 

POW - (4/23/2014 - 12:17am)

At the moment, the most promising treatment available for Stage IV is Merck's anti-PD1 (MK-3475). Merck has applied for FDA approval for that drug but nobody knows when that will happen--hopefully this Fall sometime. In the meanwhile, Merck is making MK-3475 available through an expanded access program which is starting right now.

In order to qualify for the EAP you have to have taken and failed ipi; if you have the BRAF muation you must also have taken and failed a BRAF inhibitor. You have already done the BRAF inhibitor part. So if you want to be eligible for the anti-PD1 expanded access program, you might be smart to go ahead and try ipi now. The ipi itself might work really well for you. If it doesn't, if you progress on ipi, you will probably qualify for the  anti-PD1 EAP. That would leave Tafinlar + Mekinist as a later treatment option or perhaps some other clinical trial like antibody-drug conjugates or anti-PDL1. 

I heard that Merck is approving the EAP program first at the institutions that did the MK-3475 clinical trials; Merck will add other institutions to the list as applications get processed and the drug is available. You might check to make sure that the Providence Portland clinic is participating in the MK-3475 EAP. If not, you might want to get your next treatment (be it ipi or something else) at a participating institution. 

 

Anonymous - (4/23/2014 - 1:25am)

Thanks, that's a good point about the Ipi.

In the original post I meant the imminent approval of the Merck drug, not Nivo. My oncologist thinks its approval could be as early as July... but we're keeping it in mind. 

Anonymous - (4/23/2014 - 1:55am)

My Mom has done really well on ipi. I'd recommend going with that as others have suggested with the PD1 as a back up.

Do have another MRI of the brain and get a second opinion who reviews the images with you. It's been a while since you images (or at least it sounds like it) and its better to be safe than sorry with this stuff.

I say this because my Mom was misdiagnosed without brain mets. She had 3 and then 9 30 days later when she had gamma knife radiation. 4 months later one radiologist said 3. She had 16 treated last week.

Still not sure why she's had such varied reports, but very glad we got 2nd and 3rd opinions.

Anonymous - (4/23/2014 - 2:11am)

Thanks. The original PET/CT showed nothing in the brain, but of course are not optimal tests. A brain MRI about six weeks ago was clear. If I choose the Ipi and GR-MD-02 trial, I'll have another PET/CT  for a baseline and a brain MRI to determine elibility. If going the Ipi route, I'm inclined to enter this trial as I'd be receiving full doses of Ipi, and the GR-MD-02 looks... interesting.

http://www.clinicaltrials.gov/show/NCT02117362

Anonymous - (4/23/2014 - 6:58am)

Hi,

I am sorry for that horrible diagnosis. Mine was about the same at the same time. I also have a daughter.

I know thought as the one with "the last summer", "the last birthday", "the last ...", only too well but I am trying hard to find a way to deal with them.

All the treatment options you are listing have already proven to keep some people alive for a even a decade or longer. You can read some of those stories on this very forum

IL-2: Right that not many patients repsond to it at all but if you respond there is a chance for complete remission. I think responders are between 6 and 12 %

Ipi: 25% responders, some of them with a progression free survival of a decade and more as far as I know. There obviously is a high likelyhood that if you make it without recurrence for 3 years you are in for a decade.

PD1: Over 40% responders, some being even described as "cured" by specialists.

I know that statistically this does not sound very encouraging but I am really trying to focus on becoming one of those few and I do not see why this should not happen!

And then there is something new every year, research is going ahead fast, there was even an article in the Wall Street Journal about advanced melanoma. Companies estimate a market for drufs worth 35 billion $.

Pharmaceutical companies are not particularly known for developing medication out of pure compassion but where there is cash there are solutions.

I think starting from Ipi and PD1 they will improve the reponse rate, decrease the side effects and increase the efficacy of treatment in a stepwise manner over the next few years. Amazing if you take into account that there has been hardly and progress for 3 decades!!!

So hang in and enjoy your time. You still have a number of options! For the moment the IPi --> PD1 path would probably not the worst bet!

I wish you all the best for whatever choice you make,

Chris

Anonymous - (4/24/2014 - 2:23pm)

Thanks everyone. :)

I've chosen the Ipi/GR-MD-02 trial. They're working on the pre-auths for the Ipi and the scans, so I should be good to go by the end of next week.