Charlie the Unicorn

Hi, I am having horrible side effects from Braf/Mek therapies. I feel alone. When people ask about it, many don’t know what rigor is like to go through. One night it with bone and joint pain too. It felt like I was in a medieval torture chamber. My oncologist has worked with me on dosages and other Braf/Mek combinations. I am trying Braftovi/Mektovi right now. I am trying to manage 4 pills of 75mg each. By day four I had a really bad rash affecting my upper body with face and neck needing ice towels. This was in addition to nausea and painful headaches. I stopped taking the pills feeling better 5 days out. I know people love me and are trying to help. I look fine, so some people think I am not pushing through. These drugs also make me weak, as in opening a bottle water hard to do. Staying positive and keep trying is my morning pep talk. My next CT scan is 5/10. I hope to see good results, something, just something. I have metastatic melanoma. Does anyone know what happens if I get another skin cancer? MOHS?

Hi Zimmy, I started Braftovi/Mektovi in January and working with side effects. I have the autoimmune disease of psoriatic arthritis. So working out what is causing side effects from which disease can make things murky, but I have been dealing with PsA since 2013 and have a pretty good sense of when I am having flares. That being said with my initial start of Braf/Mek I suffered severe anxiety and panic attacks. If anyone else has this happen please let me know. Doctor’s are still putting together side effects of these new drugs.

I took Tafinlar/mekinist last year and had to stop due to side effects that included a hospital stay. For both Braf/Mek and Taf/Mek we have done dosage changes and drug holidays. I just met with my oncologist on Friday and learned 4 pills of Braftovi work the same as 6 (75mg). So the initial game plan was 1 week on 3 weeks off regular dosage. It was horrible anxiety that klonopin and mindfulness along with other techniques was hard to control. I am stage IV metastatic melanoma with previous failed treatments so I really need to get Braf/Mek to work.

We did a holiday from the drugs for February. During that time I saw my psychiatrist, opthomologist (I did get tunnel vision), and rhumetologist to cross check. My anxiety went away a few days after stopping the drugs.

On 3/13 we tried just taking 1 pill of the Braftovi a day and moved up as I was able to endure it. I had major headaches that were difficult to control, anxiety attacks, weakness, fatigue, muscle soreness, difficulty sleeping, shortness of breath, and a rash I worked enduring side effects that I finally got some control over. I then was able to take the full dosages for 7 days. This time taking about 6 days to recover from weakness and anxiety. By weakness, it was hard for me to get in and out of the car, open jars, walk.

Our new plan is when I feel ready to handle it, I will do 7 days of 4 Braftovi pills each morning. (I am going to keep a journal). Hopefully this will work out for me. Right now I am preparing by doing more exercise, vitamins for anxiety, practicing meditation more, and drawing for more support like joining this forum.

I keep thinking positive and keep trying is my go to slogan.

Hi, we are hitting the odds as I just joined MRF to connect with colitis issues. In 2017 after my second infusion of IPi (Yervoy) I developed colitis. We stopped the infusions. The first hospital stay we got things under control with steroids. My second and third hospital stay Remicade got it under control. My fourth stay Remicade failed and I declined in health. I needed blood transfusions, TPN, 20 days in the hospital with Entivio got the colitis under some control. I spent the next 6 months dealing with the nausea, stool, and level 6-7 pain with Fentanyl patches. That portion of the experience was like having the nasty 24 hour stomach flu, but it lasted six months. Just last month I have started Stelara and already have great improvement. My first hospital was a death path, Chapel Hill saved my life. There needs to be more education about Ipi and other like drugs inducing colitis that is steroid resistant. Getting the Remicade and Entivio approved by insurance is a race against time. Education not just for oncologists but GI doctors too. I am better gut wise and now taking Braftovi/Mektovi for mets in my arm and liver. I am working with the side effects, but I now have panic attacks that are more terror attacks leaving me screaming into pillows. I’m known to be of cool character. Wow, you learn something new every day, unfortunately it has been the hard way. I keep it positive and keep trying. I hope my post is helpful for you, it has been helpful for me.

As more people take this newer combination we get more data about dosages and results. The 6 pills for a total of 450mg is what the FDA currently has approved. Another drug, Yervoy had a higher dosage for stage III than Stage IV which was approved at a lower dose. The Yervoy dosage is now more in sync.

I am suffering with Braftovi/Mektovi side effects so I am trying different dosages and hopefully get my “recipe” figured out.

Wishing you the best for a response. Reading my post I forgot to say I have psoriatic arthritis autoimmune disease.
It makes treatments and side effects difficult. Luckily, Stelara treats both the colitis and PsA. I am very happy to be getting better in that respect. It has allowed me to get off Prednisone. I am not diabetic or having thyroid issues. I share your feeling of no safety net. Hanging in there, research is underway.