Clinical Trial for BRAF+

In the meantime, I can provide you these articles if you are interested:

As you may already know, targeted therapy, (a BRAF inhibitor combined with a MEK inhibitor) is only effective for BRAF positive melanoma patients. Additionally, there are several different BRAF and MEK inhibitors. Braftovi and Mektovi are the newest. Here is a report on that:

Articles regarding neoadjuvant therapy –

Now. If you are a person who likes to go down these rabbit holes, be careful. Make sure the “results” you compare are from the same sorts of patients. Adjuvant folks generally have much better survival rates and response rates than Stage IV patients. Neo-adjuvant folks are probably gonna be a whole other can of worms and that’s not a bad thing, as the data for that method of treatment is looking very promising. Here is a post I put together that explains why it is important to compare apples to apples – as best as we can –

As for Moffitt – well, the CRU and I go way back! I was in a Phase I nivolumab (Opdivo) trial from 2010 to 2013 as a Stage IV melanoma patient. Our study was divided into those with active disease and those who had had all measurable disease zapped or surgically removed. I fell in the later group. We all did shockingly well!! Remember, this was back in the day. None of today’s immunotherapy or targeted therapy were FDA approved. I am certain the trial, Weber (now at NYU) and the nurses in the unit saved my life. My last treatment for melanoma
was in June of 2013 and I have remained NED with no further melanoma treatment since.

May Moffit and this trial do the same for you. I wish you my best. Celeste

In the meantime, I can provide you these articles if you are interested:

As you may already know, targeted therapy, (a BRAF inhibitor combined with a MEK inhibitor) is only effective for BRAF positive melanoma patients. Additionally, there are several different BRAF and MEK inhibitors. Braftovi and Mektovi are the newest. Here is a report on that: BRAF/MEK combo’s for melanoma analyzed ~

Articles regarding neoadjuvant therapy – BRAF/MEK before surgery as well as after is MUCH better, than just AFTER surgery for melanoma!! Plus trial still recruiting resectable stage III/IV melanoma peeps.

Now. If you are a person who likes to go down these rabbit holes, be careful. Make sure the “results” you compare are from the same sorts of patients. Adjuvant folks generally have much better survival rates and response rates than Stage IV patients. Neo-adjuvant folks are probably gonna be a whole other can of worms and that’s not a bad thing, as the data for that method of treatment is looking very promising. Here is a post I put together that explains why it is important to compare apples to apples – as best as we can – ADJUVANT therapy for melanoma!!!!!!!!!!!!!! State of the science….

As for Moffitt – well, the CRU and I go way back! I was in a Phase I nivolumab (Opdivo) trial from 2010 to 2013 as a Stage IV melanoma patient. Our study was divided into those with active disease and those who had had all measurable disease zapped or surgically removed. I fell in the later group. We all did shockingly well!! Remember, this was back in the day. None of today’s immunotherapy or targeted therapy were FDA approved. I am certain the trial, Weber (now at NYU) and the nurses in the unit saved my life. My last treatment for melanoma
was in June of 2013 and I have remained NED with no further melanoma treatment since.

May Moffit and this trial do the same for you. I wish you my best. Celeste

I think I may be in a similar (or same) clinical trial at Moffitt.

My history:

2006 — Melanoma in situ lower right leg
2015 — Recurred in right upper thigh — needed Wide Excision — Stage 2B
2020 — Surveillance CT scan revealed swollen groin lymph node — confirmed as Melanoma
Immunotherapy followed by Superficial Inguinal Lymph Node Dissection
Braf+
2021 Confirmed Melanoma in right Adrenal Nodule

Entered clinical trial:
Neo Adjuvant BRAF/MEK for 6 months (2021 July – Dec)
Surgery — Laparoscopic Adrenalectomy (2022 January)
Randomized Adjuvant treatment (Targeted Therapy or Immunotherapy) depending on the surgical pathology

Surgery was 4 weeks ago and am now expecting to begin adjuvant treatment soon.

In July and August, I had trouble taking the BRAF/MEK full doses — very sick
Dosage was reduced for the remaining months and I felt pretty good — 80% normal I guess
Only side effects were joint pain and hair loss/texture change.

In my opinion, again in my opinion,
Only way to stop melanoma forever is immunotherapy not targeted therapy. It works for some folks not for everybody. Otherwise it comes back sooner or later.

I am currently on Braktovi/Mektovi (again) but I was on the same path as you, although I am in North Carolina (UNC). I had IIIC melanoma that had spread to my lymph nodes, and after immunotherapy stopped working they put me on Braktovi/Mektovi prior to surgery to help reduce things. I will say, my first experience did not go well and after starting/stopping several times they moved me to Tafinlar/Mekinist which I seemed to tolerate better. Surgery went well, they considered me NED but later found out it had already spread to my brain. I’ve since had Cyberknife radiation and am back on Braftovi/Mektovi at a lower dose. I seem to be doing okay so far. Targeted therapy (in my experience) will do its job and give good results if you can tolerate it. I am doing okay on the reduced dose, as someone else said, but do not hesitate to contact your care team if you begin to feel side effects.

Wishing you the best!
Jenn

On a better note, I had a CT scan which showed several of my previous hot lymph nodes had vanished (groin, mesentery, upper lung). I have a stubborn one in my lower lung.. it stayed the same size after 4 months. I’ll take that as a win any day.

History.
9/2004 1.7 mm low back, sentinel node clear

7/2017 melanoma in situ left shin

4/2019 4.3 mm behind left knee, sentinel node left groin positive

5/2019 start Nivo

5/2020 stop Nivo due to progression

6/2020 start Ipi (3 of 4 doses due to lever toxicity)

7/2021 start Mek/Braf combo after progression.

Interesting Note..
When they ran the first genetic screen, I came back as BRAF negative. Per my oncologist the lab had used semi outdated equipment (Kaiser). My oncologist re-ran my sample using new equipment and I came back as BRAF positive. I’m eternally grateful to him for giving me another avenue to fight this nasty cancer..