soonerjenn14

Hi JudiAU,

I’m so sorry to hear you are in a similar situation as me. I don’t feel I was given enough information to make decisions, but I know they are waiting for the next MRI to see how things are going. I hope all turns out well for you!

Take care!
Jenn

I forgot to mention that I do have vitiligo but that started when I was on Nivo as single immunotherapy. It has evolved and changed over the 2 years of various treatments but I suspect BRAK/MEK has had some effect. My hair is also falling out, some of that was due to radiation but that part is growing back. Other parts of my hair are now falling out but I am not sure if that is the BRAF/MEK or something else. Planning to discuss this with my oncologist in June.

Hi GM,

I have been on the BRAF/MEK combo twice. I started it in April last year when it was decided IPI/NIVO wasn’t working for me. Combine that with my 2nd COVID shot and I got really sick. Rash, fever, throwing up, etc. We kept lowering the dose until I couldn’t even handle 1 pill of Braftovi so we stopped. Had surgery in June (tumor removal and lymph node dissection) and thinking I was NED we did not do any medication post-surgery. Fast forward to September and we found out I had 8 brain mets. We decided to try it again with a 2/2 dosage along with radiation and I’ve done okay. It makes me tired, but no rash/fever/throwing up. At my last visit, we decided to try 3 weeks of my 2/2 dose, take a week off, and then do 4 Braf/2 Mek for 3 weeks, take a week off, repeat. I’ve found that my skin has gotten really dry and I have even less energy during the 4/2 cycle but still none of the other side effects I had the first time. I go back in June and will talk with my oncologist to see if it has really helped, if not I would prefer to just sticking with the 2/2.

I hope this helps. Best of luck to you!!
Jenn

MasAndersonJr,

I see the experts have weighed in on your wife’s case (they are the best). I just wanted to chime in on my personal experience. I did Opdivo single immuno for 10 months for stage IIIc melanoma until it stopped working. Went to Opdivo/Yervoy for 3 cycles until it was determined it wasn’t working, so we moved to Braf/Mek, which I had issues with but it got the job done. I had surgery in June 2021, and all went well, but we failed to see I already had 8 brain mets so that was an unexpected treat in September 2021. So, after radiation/steroids I am back on Braf/Mek (lower dose) and hanging tough!

The point of my response is never to give up hope. I thought I was finished last September, but I am back to working full-time and just taking it one day at a time. I wish you both the best!
Jenn

Hi there,

I am currently on Braf/Mek for the second time. My first go-round I was on the 6/6 dosage and I had the same vision problems day one – everything was blurry. Fortunately for me, it went away in a day or two. I ended up having some major issues about 2 weeks in, which we now think was due to my stopping Ipi/Nivo after 2 rounds and going straight to Brak/Mek and also having my second COVID shot around the same time. They continued to lower my dosage but I would start projective vomiting immediately after taking it so they switched me to Tafinlar/Mekinist until my surgery in June 2021, which I tolerated better but that is not the norm for most.

Fast forward to September 2021, they found 7 brain mets on my first “NED” follow up. I am back on Brak/Mef now, 2/2 per day. I can’t say for sure what side effects I had due to the meds in the beginning because I was on 16mg dexamethasone, oxycodone for headaches and also had a week of Cyber Knife radiation to my brain. I took a two week break from Braf/Mek a couple weeks ago, and after going back on it I’ve had body aches, fatigue, and occasional upset stomach. I see my radiation oncologist and medical oncologist next Friday, and hopefully, if MRI/CT scans look good maybe we can make some changes.

I don’t know if this information helps, as there are many experts who I have relied on in the forum who can provide proper statistics and better information. As others have said, stay positive and ask questions. My oncologist always tells me I am the captain of this ship, so the decisions are ultimately mine, but I value his knowledge and expertise. Try not to Google too much, it is terrifying and you have to remember no two stories are the same!

Take care and best wishes!
Jenn

Hi there,

I also had a “ground glass nodule” show up in one of my CT scans last year. My oncologist said it could be related to some type of respiratory infection or something like that. It was gone by my next CT scan. However, I have not had any lung mets so I can understand your worry. I was scared too until it was gone.

I don’t know if this helps but wanted to share my experience. Hang in there and best wishes!!
Jenn

Hi MM,

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

Congratulations!! I haven’t got to ring the bell, but I did get to bang the gong after my radiation treatment was complete (brain mets).

Wishing you health and happiness!
Jenn

I also asked my oncologist about this – he told me the same, alcohol in moderation. I personally have had a glass (or two) of wine while on immunotherapy and had no issues. Drink a lot of water before and after. Others may say different but I say a special occasion deserves some enjoyment! Quality of life…we have to live for our special moments while battling this disease! Of course, we all respond differently so take my experience as you wish and do what you think is best.

Whatever you choose, happy anniversary to you and your husband!

All the best,

Jenn

Hi Jennifer (I’m a Jennifer too!),

So sorry to hear about this – I, unfortunately, know how awful this feels. I was told I was NED in June of this year after I had surgery to remove my primary tumor and a lymphadenectomy. Had my first 3 month check-up in September and they found 8 mets in my brain. So I’m back at it as well! I almost wish I’d never had a taste of NED…I was back at work and trying to find some type of new normal and now…well, here I go again with even worse circumstances.

Good luck with your treatment and I hope your side effects are minimal. Melanoma sucks but we are fighters!

Best wishes,

Jenn

Celeste,

Thank you for the encouragement and positive stories! It definitely helps me get through the day knowing others have survived this battle. We can do it too!

Appreciate your support!

Keeping up the fight,

Jenn

I wish I had some good stats to share, but as I posted on your other thread I am the same as you – 8 brain mets, just started treatment in October (found & diagnosed 9/24). I’m waiting to see how my current treatment is going…one round of Cyberknife ended 10/13 and taking a low dose of Braftovi/Mektovi. Still on Dex, 7mg on a slow taper and my oncologist has discussed adding immuno to my targeted meds once I am off the steroids. Brain MRI is on 12/13. It’s so hard to wait; I feel like a ticking time bomb!!

Hoping someone will chime in with some good news!

Keep on fighting,

Jenn