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Well, it’s melanoma

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Well, it’s melanoma

Posted By
AMcReader
9/2/2020 9:05am
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Replies: 15

I’m sad/furious/heartbroken/angry to report that the biopsy for the spots in my peritoneum came back as melanoma. So back in the treatment ringer I go!

I had a long chat with my oncologist last night and made the decision to do a BRAF combo with PDI immunotherapy. I am blanking on the names of the drugs right now because they are not ones that I’m that familiar with yet. Essentially, these are the drugs from the INSPIRE trial which I understand are now FDA approved.

I am excited about this treatment plan because I’m hoping I’ll be able to get some quick pain relief, but also build up a durable response rate with PD1. My oncologist shared that for patients like me they are seeing 70% PFS at 6 months and 30% PFS at 30 months (which is where they start to see a leveling off), so I will remain incredibly hopeful that I will be part of that glorious 30%.

I’m allowing myself a couple days of sadness, but also working on building my strength and determination back up to get into this fight again. I have an amazing, kind, loving, soul-mate of a husband to fight for and my hilarious, sweet, spunky, beautiful little girl!

Back in the ring I go! Determined to know this shit out again.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

AMcReader - (9/2/2020 - 9:07am)

***Determined to *knock* this shit out again.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

Bubbles - (9/2/2020 - 9:56am)

Well, shit fire!!! I am so sorry, Amanda. I was so hoping the results would be very different! But, you're right - rest, cry, scream, play - whatever you need - then get back into the fight. I KNOW you can KNOCK THIS SHIT OUT AGAIN!!!

Oddly enough, there are quite a number of INSPIRE trials for a wide variety of diseases and drugs. (Guess they developers feel the name is INSPIRational - and lack imagination!!) However, I'm guessing that your doc is setting you up with the drugs included in the IMspire 150 study. Here's a report on it when or if you're interested: https://www.targetedonc.com/view/imspire150-study-meets-primary-endpoint...

This post addresses the combining immunotherapy and targeted therapy - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/08/treat...

It includes this abstract on the IMspire combo in particular:
Atezolizumab plus cobimetinib and vemurafenib in BRAF-mutated melanoma patients. Sullivan, Hamid, Gonzalez, et al. Nat Med. 2019 Jun;25.

Melanoma treatment has progressed in the past decade with the development and approval of immune checkpoint inhibitors targeting programmed death 1 (PD-1) or its ligand (PD-L1) and cytotoxic T lymphocyte-associated antigen 4, as well as small molecule inhibitors of BRAF and/or MEK for the subgroup of patients with BRAFV600 mutations. BRAF/MEK-targeted therapies have effects on the tumor microenvironment that support their combination with PD-1/PD-L1 inhibitors. This phase Ib study (ClinicalTrials.gov, number NCT01656642 ) evaluated the safety and anti-tumor activity of combining atezolizumab (anti-PD-L1) with vemurafenib (BRAF inhibitor), or cobimetinib (MEK inhibitor) + vemurafenib, in patients with BRAFV600-mutated metastatic melanoma. Triple combination therapy with atezolizumab + cobimetinib + vemurafenib, after a 28-d run-in period with cobimetinib + vemurafenib, had substantial but manageable toxicity. Exploratory biomarker data show that the cobimetinib + vemurafenib run-in was associated with an increase in proliferating CD4+ T-helper cells but not with an increase in T-regulatory cells, as observed in the vemurafenib-only run-in period. The confirmed objective response rate was 71.8%. The estimated median duration of response was 17.4 months with ongoing response in 39.3% of patients after 29.9 months of follow-up. Further investigation in a phase III trial is underway.

If this is indeed what your doc is basing your treatment on, your drugs would be atezolizumab, cobimetinib, and vemurafenib. And yes, these have all been FDA approved for a while - it is the combo that makes this trial unique. Again, only if you are interested (or for others whom this may benefit) here are some articles on each:

Atezolizumab - (an anti-PD-L1 product) - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=atez...

Cobimetinib - (a MEK inhibitor) - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=atez...

Vemurafenib - (a BRAF inhibitor) - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=vemu...

There is probably overlap in the articles. And it is very understandable that you may very well have zero interested in plowing though all this just now. But - it's all I have to give you. This and my warmest wishes. Know that I, along with many others, will be holding you and yours in my heart as you beat the beast one more time!!! celeste

AMcReader - (9/2/2020 - 10:37am)

You are right! That is the drug combo I’m going to be doing.

Because I appreciate your endless insight, are there other drugs that you’d recommend considering before diving in?

Thank you so much for the kind, caring, loving response! I appreciate it so much.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

Bubbles - (9/2/2020 - 10:48am)

No. I think that the immunotherapy/targeted therapy combo approach is a sound one for those who are BRAF positive and haven't responded to or progress after the ipi/nivo combo. If you look at the first post from my blog in the link above about the combining of immunotherapy and targeted therapy you see that researchers have been looking at it as far back as 2015 and a lot of Melanoma Big Dogs seem on board with it. Both of those factors, as well as the data noted in the trial I pasted out of that post, speak well of it. I hope it does exactly what you need it to do with as few side effects as possible so that you can put all this melanoma crap behind you! yours, c

AMcReader - (9/2/2020 - 3:48pm)

Thank you, Celeste! ❤️

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

gopher38 - (9/2/2020 - 10:53am)

Not what we wanted to hear. I know this crap can go anywhere, but seemed like a strange place for progression. Such a drag going back into the treatment wringer. But hoping this one gives durable, durable, durable response.

AMcReader - (9/2/2020 - 12:24pm)

Such a weird place and it was a weird presentation too! Lacking the abdominal fluid build-up, which many experience when they have Mets in their peritoneum.

Either way, back in to treatment I go. It’s time to fight-on!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

marta010 - (9/2/2020 - 12:19pm)

Hi Amanda -well that news does suck. For what it's worth, my husband has been on a combo of Tafinlar and Keytruda for the past several years and has been mostly stable excluding a pesky, previously treated brain met and a new tumor in his spleen when we tried reducing the Tafinlar dosage. The spleen met is reducing now that he's on a full dose of Tafinlar. I hope you experience the same success with your combo. Take care!

Ann

AMcReader - (9/2/2020 - 12:22pm)

That makes me feel a lot better! Thank you so much for sharing. ❤️

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

JudiAU - (9/2/2020 - 12:58pm)

Ugh I’m sorry. Why is it so much work to stay alive?

AMcReader - (9/2/2020 - 3:50pm)

That is something I wonder too! But, I’ll keep fighting on, no matter what it takes!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

THMoore - (9/2/2020 - 1:38pm)

Amanda,
You are one tough lady. I am so sorry you are back into taking new treatments. The way I see it, you have done so well on every treatment so far, that I truly believe You will do excellent on this new one. Huge hugs and prayers for a excellent outcome.

Trent

AMcReader - (9/2/2020 - 3:51pm)

Thank your for the vote of confidence, Trent! I thrive off positivity!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

TimCT - (9/3/2020 - 10:10am)

Hi Amanda, I'm doing a version of this treatment as well, though I just started taking Braftovi (encorafenib) and Mektovi (binimetinib) and staying on Opdivo (nivolumab). I also was on ipi/nivo and progressed. Initially, my doctor wanted me to join a trial that combined an anti PD1 with an intralesional, but it took too long to begin enrolling and I was progressing too quickly, so I started the BRAF inhibitors. Its working really quickly, and I've had just about no side effects to report so far. It seems a lot of the effectiveness of the anti PD1 has to do with tumor load, so it stands to reason that its a good idea to reduce that load as best you can, to give the anti PD1 and your immune system as much of a chance to work as you can.

I hope for both our sakes that our doctors are right and this is our silver bullet!

jbronicki - (9/3/2020 - 6:35pm)

Oh Amanda, I'm so sorry it came back melanoma, I know you have gone through so much as a new mom and and just with everything. You are beyond tough. I agree with everything written and in general the combinations do seem to be the way everything is trending. I agree with Bubbles, it is great to see that trial meet the primary endpoint and looks like they are probably analyzing the secondary endpoints now and hoping to see positive outcomes on those as well. I am keeping all my fingers crossed that this is the treatment to kick this to curb once and for all. MANY HUGS!
I just wish you didn't have to get back in the ring again on this one but I know you got this.

Jackie <3