› Forums › General Melanoma Community › Braftovi/Mektovi
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S1fact.
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- April 5, 2019 at 3:08 pm
This is my first time posting. My husband was diagnosed with melanoma in July 2015. He had wide margin excession with a clear SNL. Last year he had a lump appear under left armpit and it was melanoma. He had 19 lymphnodes removed and began immunotherapy.. but it did not work. He has a wonderful Melanoma specialist! He is BRAF positive and has begun BRAFTOVI/MEKTOVI this past February. He did great with no side effects the first month and a half, but has begun to have abdominal pain which she said is one of the common side effects of this drug. She had him get off of the pills for 4 days, and then dosed him down 2 weeks ago to see if this would relieve some of the abdominal pain. She told us to try Ibuprophen and also gave him pain medicine to try. Of course we would rather not have to rely on either of these due to the obvious. I realize this version of targeted therapy is new..coming out summer of 2018? Just wondering if anyone has experienced abdominal pain while on targeted therapy, and if so what did you do to help? I really appreciate any advice!
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- April 6, 2019 at 12:01 pm
Hi Zimmy,
Since others have not answered yet…I thought I would share. I have not taken targeted therapy but have been researching and reporting on all things melanoma for 16 years. There won't be a lot of folks on here who have taken your husband's BRAF/MEK combo because it is new…though there are some. As far as the side effects related to BRAFTOVI/MEKTOVI, they have been pretty consistent (as have all the other combo's) with what we know for targeted therapy generally. Most side effects, no matter what they are, are addressed with a dose reduction, drug holiday, alternative scheduling and/or prednisone. Here is a post that addressed treatment of side effects with links to additional reports within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/management-of-adverse-events-with.html
There are other BRAFTOVI/MEKTOVI related posts on my blog. Use the search bubble if you are interested. Hope this helps and that your husband is feeling better soon. I wish you both my best. Celeste
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- April 6, 2019 at 4:16 pm
Hi there Zimmy, there is a Facebook Melanoma stage 4 group which has many members on the new targeted therapy combination. You have to ask the admin of the group in order to join, you can use my name with Ashley the group admin to join and hopefully get some feedback from others on the combination!!!Best Wishes!!!Ed
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- April 6, 2019 at 4:18 pm
"Melanoma Stage four support group" is full name on Facebook!!!
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- April 6, 2019 at 4:44 pm
I started Braf/Mek in March but was taken off of the Mektovi three weeks later becaue it was harming my heart (lowered my left ventricular ejection fraction). I too was having abdominal pains but at this point I wasn't sure if it was the meds or tumors – I have a set of scans coming up this week so I should be able to tell you more after that.
I am currently only taking the Braftovi, but 4 pills daily as opposed to 6.
I have an appointment with a cardiologist this week as well and if my heart has bounced back they may put me back on the combo at a lowered dose.
I can tell you I think I'm now suffering from "peripheral neuropathy" – my legs, arms, hands and feet are screaming. I hope they can help me fix this next week.
I'll let you know what I find out this week. Tell him to hang in there!
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- April 6, 2019 at 4:51 pm
I am so sorry you aren’t feeling well. Hopefully that will be resolved soon. The doctor took my husband off the pills for about a week..and the pain went away…so that is why she feels it is the medication. She has him to an initial heart and eye screening before getting started. Please let me know how your scan goes..he will most likely have one in the next few weeks as well. -
- April 6, 2019 at 5:41 pm
Ah the eyes . . forgot about the eyes . . The day I started Braf/Mek my eyesight was horribly blurry for about 8 hours after ingesting the Braf (it didn't happen later in the day when I took the 2nd dose of Mek). After about a week, it stopped. They sent me to an opthamologist who looked at me like I was nuts lol. So . . hopefully your hubby won't have eye issues if he hasn't yet!
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- April 16, 2019 at 5:21 pm
I meant to tell you that my mom had peripheral neuropathy die to diabetes. There were times that it would become so painful that she would get a water bottle that she had put in the freezer and roll her feet over it,,or if it was cold outside, she would step outside..the cool to her bare feet helped. It is no means a cure but did help her get some relief!
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- April 7, 2019 at 4:13 pm
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.
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- April 7, 2019 at 9:28 pm
Thank you so much for responding. Right now my husband is taking 4 Braftovi and 2 Mektovi. He tried 5 /2 and then went 4/2…seems to feel better yesterday and today on that dosage. His doctor told us that you have to play around with dosage to find what works for you. We go and see her tomorrow. That is very interesting what your doctor said about 4 Braftovi being as effective as 6. Why would they put anyone on 6 if four works? I am so sorry you are having all these issues. Will be praying for you as well. Thank you again for getting back to me. -
- April 8, 2019 at 1:27 am
I would take a look at the Columbus trial data which led to the approval of these two new drugs!!! If you go to the 2:40 min mark of link below from ESMO 2017 meeting the panel talk about how much longer patients have for progression free survival and overall survival at higher dose of combination. https://m.youtube.com/watch?v=8uAudb1-jCs&time_continue=158
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- April 8, 2019 at 1:35 am
Here is a more recent talk on targeted therapy including columbus trial. https://m.youtube.com/watch?time_continue=25&v=U0C9N6YJFAE&ebc=ANyPxKpokWaVRvNkjk4aojp9p-YDO9SOTw6Bf8c5W8nIXbH7XGoGjrePWkp3cobfdcFLLxiA0-Yau0WKDz5Hee48rm5XThhQiA
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- April 9, 2019 at 1:20 am
Thank you Ed. I really appreciate your reply and links you shared. I looked at both of them. I think it is all good information to know. We met with my husbands oncologist today. I really like her..she just recently came to our location from MD Anderson. She was fine with my husband dosing down. She said that with this new combo they had dosed higher than the previous combo so he is actually takin the same dosage as the previous combo. So praying he can be without any more side effects and stay on this dosage. She said if he does well for the next month we may try dosing back up. He has a scan in a month. Trusting God for healing and a cure for everyone. Again..thank you for sharing! P.S. I still haven’t gotten approval for the FB page you suggested? -
- April 9, 2019 at 1:50 am
She only adds members when she gets a group together and then adds them all at the same time!!! It has been a few weeks since she added any new members so it will probably be soon!!!
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- May 1, 2019 at 1:54 am
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.
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- April 8, 2019 at 7:48 pm
My stage IV husband is on this combo. After stopping and starting due to fever and vomiting his new unbearable side effect is knee pain and loss of power and ability to move left knee. It isn't progression of brain tumors as CT showed the tumors were getting smaller for last two scans YEOOO! His pain is off the charts though now on vicodin/Ibprof and we are afraid as he has liver tumors and elevated enzymes.No relief but paused therapy again. Now back on reduced dose 3 tabs Braftovi am and two tabs with one in evening of MEK. Hoping he can tolerate this as CT shows it is working.It seems that my husbands DRs bring him to the point he can no longer bear symptoms, stop for a break and restart. He isn't getting a great amount of relief in between but at least breaking up the worst of the symptoms gives the medication a chance to work. Wishing you the very best and some great pain free days. It is very hard on everyone
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- May 14, 2019 at 3:14 am
Following as I just recently began on this combo as well. On lowest dosages due to uveitis and retinal detachment on Cobi/vemurafenib combo. Had Keytruda in between and although it had positive results in my body, I developed brain mets and colitis so had to stop Keytruda.
All this to say that the combo so far, very similar to the other braf combos is a roulette wheel of side effects; you can spin the wheel every day and not have two days of symptoms be the same. Bone pain, arthritis type pain, face pain, rashes and stomach issues already in the first week for me. I find the stomach pains are helped by small meals and ginger candy/chews.
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