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Quality of life on Braftovi / Mektovi and I

Forums General Melanoma Community Quality of life on Braftovi / Mektovi and I

  • Post
    Daisy2018
    Participant
      1. Hello everybody,

      Question about quality of life on Braftovi / Mektovi. I have stared on a Keytruda after surgery on local recurrence anout 6 months ago.
      keytruda caused sarcoidosis like lesions which totally clouded the picture on PET.
      biopsy showed local recurrence close to primary site. Looks like it’s the only one site although there is one more in the chest they are not 100 % sure if it’s sarcoidosis or Mel.
      Doctors suggest Braftovi / Mektovi.
      I m worried about quality of life having rashes, fevers, nausea, vomiting, fatigue all the time.
      I m in a still decent health and don’t take any meds, none. I mountain bike, exercise and feel good. Is it going to be the turning point where to be miserable most of the time and gain this cancer free diagnosis  for a bit?
      I would prefer to hit it hard, recover and  hopefully gain control over it instead of drugging misery and calling it life.

    Viewing 17 reply threads
    • Replies
        TimCT
        Participant
          Hi Daisy,

          I’ll let you know my experience so far, but I’ll also be watching the replies, because I’m interested as well.

          I got the 4 ipi/nivo starting in March 2020, then switched to just nivo after.  I had an initial response but then progressed, so I started Braftovi/Mektovi in September 2020, while also getting nivo once a month.

          All things considered, my quality of life is very good. I experience fatigue regularly, joint pain (mostly in my hands and wrists right now), some brain fog, sensitive skin, vitiligo, most of my hair has fallen out, my mustache turned white. I have days that are a struggle, mostly because of the fatigue. But other days are largely normal. I work 40 hours a week, though its a desk job. If I did physical labor, things might be different. I’m nauseous sometimes, though a zofran takes care of it, if its more than a passing wave. No rashes or fevers (yet).

          I can’t really say what is to be attributed to the nivo and what is attributed to the targeted meds, or that perhaps being on one has made the other a bit more intense. I had joint pain before starting the targeted meds, though it wasn’t constant like it is now. The hair loss is most likely because of the braftovi/mektovi, though the white hair and vitiligo is probably more due to a response to the nivo.

          As usual, melanoma seems to produce more questions than answers, and everyone reacts differently to the various meds. But I hope this has helped some! I certainly wouldn’t be afraid of starting the targeted meds. I can still do all the things I used to, just slower!

          Mark_DC
          Participant
            Hi Daisy

            I am not BRAF positive so Braftovi/Mektovi for me was never an option.

            I 3-4 repeated local recurrences: the first two were taken out by surgery but kept coming back. Keytruda didnt really work, just led to slow progression. But then we added TVEC and that seemed to work.

            So, have you thought about intralesional (with keytruda). I think it can work even if there is a spread but my intuition is that it can work even better for local recurrence (based on my experience). Or is keytruda ruled out now because of the sarciodosis (sorry).

            But your plan seems to make a lot of sense too and my understanding is that many patients tolerate targeted therapy pretty well.

            good luck Mark

            Daisy2018
            Participant
              Hi Tim,

              Thank you for replying. The part where you say

              ”things considered, my quality of life is very good. I experience fatigue regularly, joint pain (mostly in my hands and wrists right now), some brain fog, sensitive skin, vitiligo, most of my hair has fallen out, my mustache turned white. I have days that are a struggle, mostly because of the fatigue”

              It doesn’t sound very good. I was not sure if you were joking.  I guess we take what we can get. You can walk and not in terrible pain, you can enjoy your life and have almost normal quality of life  so everything considered the alternative  is worse.

              I have beautiful thick long hair, a lot of hair. It would be sad to lose it.

              I guess I was always entertaining the idea of wigs so maybe I will do that. Playing with styles and colors it can be fun I suppose. It’s probably hot and sweaty to wear them. I hope my insurance would cover it?! Lol.

              I like mountain bike I hope I still be able to do that.
              I hate pills.I was ok with IV infusions of Keytruda but pils is something I need to get used to.
              Mark, thank you for replying. You always find time to reply. I appreciate it.
              Dr. Weber, the wizard of melanoma world, said that I can’t do any immunotherapy now due to this sarcoidosis like reaction.
              I didn’t feel it. I was asymptomatic but it was actually literally dissolving my bones. Scary!
              He said I should be on targeted therapy for about a year and then can start back with immunotherapy. He said he had a patient with this reaction and she  was fine starting back on immunotherapy. This reaction is pretty rare. My oncologist in my town never had a patient with this reaction. Weird me. Dr.Weber said I m not a good candidate for trials since all trials involve immunotherapy some sort.
              I m glad you guys are doing good and found therapy that works. I always look at the posts of ones who struggle to find treatment and  when I see them popping back in it makes me smile. We are still kicking melanomas a…s.

               

              KyleS
              Participant
                I have been on Braftovi / Mektovi for a while now and the only issue that I had was a borderline low LVEF that was resolved with a dose reduction. It’s weird how some people get a full list of side effects while others get virtually nothing. I think one positive thing to look at is most of these side effects can be well managed with dose reductions, drug holidays or other medications.
                Daisy2018
                Participant
                  Thank you Kyle for sharing your experience.
                  Are  you saying you had some heart failure in your left ventricule due to this medications?
                  Holy sh.. !!! 😩

                  Definitely not looking forward to that!

                    KyleS
                    Participant
                      It wasn’t quite heart failure level but my LVEF at baseline was I believe somewhere in the 60% range.  I had a follow-up echo 3 months later after starting the drugs and it had dropped to 50%.  I ended up having my Mektovi dosage reduced and the follow-up echos after that showed my EF back in the 60% range.  It is a rare side effect but I felt fine with that since I was being monitored with echos every few months.  Don’t let that scare you away though!!  I have been NED for almost 2 years on these drugs.
                    Meadow
                    Participant
                      Your post inspired me to finally sign up! I was like you, very healthy, active, etc. Melanoma requires complete change in attitude in what will be your new normal. I was on Braf/Mek for 8 months and was fine for the first few months and then experienced fatigue, fever, muscle cramps, eye problems, neuropathy, hair thinning, etc. It completely sucked and I would gag if I saw someone taking pills on TV. BUT it shrank my melanoma enough that I could get surgery so it was successful. The fatigue took a couple of months to recover from and my hair eventually came back (new growth was frizzy).

                      You can compare it to a Grimm’s fairy tale, like the Swan Brothers, you have been tasked with something terrible, but you have to just do it if you want to live. Nothing in fairy tales is ever free, there is always a price to pay. Melanoma is the same way, nothing is given and there is no guarantee that it will work. I wish you the best and you may be one of the lucky ones that doesn’t have side effects.

                      Daisy2018
                      Participant
                        Hi Meadow,

                        How funny my post had inspired you to sigh up. I like that.
                        I don’t think about fairy tails anymore. I wonder why? This is what happens with grown ups I guess. Where does this sweet innocence go?

                        Thinking about it brought all my childhood memories back. Thank you for that!
                        I m pretty disciplined person with what I do and I don’t indulge on temptations of life much although I do have couple which are important to me and I m worried I won’t be able to do. It’s just grieving my possible loss of health, change in life style. Loss of control! Big scary adjustment for sure!

                        What happened with you after the surgery? What are you on right now?
                        How is your health now?

                         

                        Daisy2018
                        Participant
                          Mark,

                          Are intralesional administred in the lessons under the skin or they can be injected in the lymph nodes? My oncologist was not sure when I asked him this question.
                          Yeah, doctor Weber doesn’t want me to do Keytruda or any alike immunotherapies in order  to calm down this reaction I had. He said we can do it later.
                          I would do  intralesional and couple Keytruda. I do have Mel in my lymph node in the groin. It will not kill me to do couple Keytrudas, I think.  What if it would work and I could manage side effect with Prednisone if I have to like they do with other toxicitities? I would prefer that vs targeted therapy.

                          sandyd77
                          Participant
                            Caregiver
                            Hello,

                            My husband is Stage 4 and has been on Braf/Mek for a year.  He was switched to targeted after 10 months of Opdivo provided only a mixed response and mets in his lungs and the original site on his back started to increase and grow.  He had a complete response on Braf/Mek except for a small met on his liver which has just started to increase.  However, during a recent scan, we found he had mets in his brain although the lungs/back remain OK.    He just completed 10 rounds of brain radiation and is recovering from that fatigue.  Although the Braf/Mek made him tired, it did not make him as fatigued as the brain radiation has – I understand this is to be expected and we are hoping it will pass.  He is scheduled for a biopsy of the liver met next week to have some additional testing done for possible alternative therapies.

                            While on the Braf/Mek – he had some occasional fevers/chills which we managed with Tylenols.  Other than than that, he had a persistent rash/itching on this torso and we have become heavy Cortisone cream users!  He did not have any hair loss or digestive issues.    I am very glad he had the option of the Braf/Mek as overall – we found it to be effective and manageable.

                            I wish you the best of luck!

                            Sandy D

                            Daisy2018
                            Participant
                              Thank you Sandy for taking time to respond!

                              Just got pills in the mail this morning.
                              One medication 6 pills once a day and another 3 pills twice a day.
                              Just thinking about it makes me want gag!
                              Oh, each monthly dose is $12,000 !

                              Mark_DC
                              Participant
                                Hi Daisy,

                                Thanks for your kind words earlier.

                                I am not an expert on targetted therapy since I dont have BRAF but I have always been kind of envious (sorry not quite the right word!) – BRAF positive have an extra treatment option (I have NRAS which is no use!) and I always read that the side effects were often OK. Maybe I am wrong though? On keytruda I had fatigue and mild skin rashes but I tried to ignore the fatigue – I would pretend I was Bubbles and cycle most weekends say 15 miles. I could have been tired for other reasons. So why not read other BRAF patient experiences to get a sense of the side effects but I hope they are not as bad as you fear.

                                On pricing – my bills for keytruda and then for TVEC too were out of this world. They depressed me and made me feel guilty. But later I realised also that the prices are made up – hospitals overcharge and the price the insurance company actually pays is different from the one you see. The New York Times today reported on a hospital billing people more than $3000 for a COVIC test. In the end, I would hit my deductible then ignore the bills. Its not as if I wanted this disease.

                                On TVEC and lymph nodes I have no idea. But is Dr. Weber your doctor or someone else? Weber would obviously know. I think it can be applied to anything a needle can reach. Mine was located by ultrasound. I could see the tumour on the monitor every two weeks. At first this was depressing to see how large it was (larger than the MRI) and that it was growing; then as the TVEC started to work it would drop in size 1mm or 2mm each week until in the end the surgeon found it hard to see where to inject. We could see something but didnt know what it was. That process was actually quite uplifting, to go in each two weeks and to receive slightly good news each time.

                                TVEC does not work that often I understand but my intuition is that it works for low tumour burden and for when immunotherapy almost works but cannot quite. Then the intralesional kind of wakes things up, injects a fake virus which tells the body where to attack.

                                Do talk to Weber about all the options but I wonder / hope that maybe you fear the side effects of targeted therapy too much. Immunotherapy also has side effects. Ipi especially but keytruda too. It may not be as bad as you fear especially if you psych yourself up that you will exercise every day and pull through it.

                                 

                                Good luck

                                Mark

                                Daisy2018
                                Participant
                                  Mark,

                                  Yes you are right BRAF mutation gives you advantage. My sarcoidosis like lesions reaction to immunotherapy doesn’t let me have any type of immunotherapy for a while. This part sucks. Was I  not BRAF positive I m not sure what they would do with me now. Probably surgery but still they would need some systemic coverage. I lighted up like a Christmas tree on a scan and they could not figure out which one are cancer lesions and which ones sarcoidosis like lesions. Did biopsy of  bones which were sarcoidosis and biopsy of the groin close to the primary site was melanoma. There were couple spots not biopsied. Weber is consulting on my case. He said I should be on targeted therapy for sometime and then can go to immunotherapy once it settles down. We didn’t talk about TVEC. I think he will disagree with the fact of giving me more a Keytruda. He said I should take break from Immunotherapy.

                                  I was asymptomatic though. I would think I can do some more without sinking the ship! At least try two more and TVEC with little dose of Prednisone coverage?
                                  I was thinking about TVEC and read your previous posts and looked at some information. Somebody said the wanted give poetic justice to their melanoma by giving it herpes. It was cracking me up. I like the idea of TVEC and I asked my oncologist in my town who treats me to think about it. I already had Keytruda for 6 months. Maybe this virus will give it a little kick it needs to dissolve the tumor.  My tumor load is still low. lDH is 166.  They can give it to lymph nodes or like you said anywhere they can stick a needle in.
                                  We could re-evaluate in a couple of months?!

                                  The idea of taking those 12 pills every day for a year  or indefinitely is terrifying! Damn cancer!

                                  hxcadam
                                  Participant
                                    I’m taking Taf/Mek currently.  It’s 4 pills of the Taf and 1 of the mek daily.  I get fevers generally on a 2-3 month basis that last for about a week.  With them usually I’ll get a day or 2 of chills that seems to only set in overnight.  Other than that though maybe some mild fatigue and mild joint pain.  I do work 10 hour days though so may not be the medication causing that.  Coming up on a year taking the pills and they definitely worked to reduce tumors but last scan seemed to just level off with nothing growing or shrinking.  Next scan is 2 weeks from today.
                                    2Kathy
                                    Participant
                                      I was on Braf/Mek for 3 months and was very sick. Nausea, vomiting and fatigue. It was working though. I ended up switching to Taf/Mek and have been on that for 18 months. I find the side effects more manageable. Occasional fever, chills, rigors, it could get really unpleasant the first year. Fatigue of course. And joint inflammation, painful knees, which I’ve had a physiatrist treat to help manage the pain. The average duration for targeted therapy is 12 to 14 months, so I’m pleased to be an outlier on the plus side of that.
                                      If you have a very bad response to this first targeted therapy, it’s possible you can switch to Taf/Mek. And maybe you’ll be one of the lucky ones who doesn’t get bad side effects. Braf/Mek is supposed to have less side effects than Taf/Mek, just didn’t turn out that way for me.
                                      Bubbles
                                      Participant
                                        Never having utilized targeted therapy personally, I can’t provide any first hand info.  However, 2Kathy makes an important point.  That is – at this time there are several BRAF/MEK combo options.  Here are a couple of posts I made, with many links within, that attempt to list and compare the various drug options – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=braftovi

                                        yours, c

                                        Beth
                                        Participant
                                          Hi Daisy

                                          I know you’ve already received several great responses but I thought I’d share mine as well since everyone’s is a little different.  After a craniotomy last year I did 3 rounds of ipi/nivo then 2 rounds of nivo.  My immunotherapy was stopped due to toxicity and we didn’t resume because everything had stabilized.  Fall of last year we saw what looked like progression and I started on Braftovi & Mektovi in November.  I haven’t really had any noticeable issues.  We did reduce my dose in the beginning because my liver enzymes were elevated.  However I’ve been able to slowly increase and I’m back to full dosage.  I do have some hair thinning but that started long before I was on the Braf/Mek.

                                          I am somewhat fatigued but I also have a 2 year old and I think he might have more to do with it than the meds.  🙂   I work full time (desk job not physically demanding) and I’m able to spend a lot of time playing with my son, walking my dog, doing yard work, etc…  I’ve also just started to get back to working out.  I have some minor joint pain but nothing that isn’t manageable.

                                          Hope that helps!

                                          soonerjenn14
                                          Participant
                                            Hi Daisy2018,

                                            Being new to Braf/Mek and since it sounds like our treatment paths may be somewhat similar, here is my story:

                                            Diagnosed in April 2020 with progression to lymph nodes and possible mets in bones and liver. Started on Opdivo later that month. I felt great – I am a runner so I can identify with your wanting to stay active. I was able to run, even increase my pace and lost 25 lbs. Had a great response on Opdivo alone until January, when lymph nodes started enlarging again. Doc decided to try Opdivo/Yervoy – tougher, but life was still manageable. I could still run, not at the rockstar level (for me) I was but I felt pretty good. Combo did not work so we decided to try Braf/Mek for a couple of months, then we will schedule surgery to remove lymph nodes and what’s left of the OG tumor, and then continue Braf/Mek as adjuvant therapy after. I started on 3/26/2021 and my whole world changed. Now, keep in mind everyone’s response is different but I have been miserable. Stomachaches, nausea then diarrhea then constipation, fatigue, and I even had vision problems after 24 hours which thankfully cleared up quickly. They took me off of the pills (I was doing the full dose 6/6) for a couple of days to see if I got better, but then I got my second COVID shot. I had the usual side effects from that, but then I started back on the BRAF/MEK on a reduced dosage of 4/4. Let’s just say the storm of residual immunotherapy, COVID vaccine, and the pills pushed my body overboard. I only thought I was miserable before! Head to toe rash, fevers, and I was swollen all over. They had to give me 3 liters of fluids and start me on Prednisone on Tuesday. I’m feeling somewhat better now but have a way yet to go. I have not had a chance to see how I will feel on the reduced dosage yet without this other going on but I tell my story to say this – I haven’t been able to run in nearly 3 weeks and that is serious heartache for me, and I do mean serious. I feel like a sloppy lump on a log and I want nothing more than to get back on the road except for one thing – I want, no I NEED to beat this damn disease. How long will I feel like this? No idea. Would I do it again? Absolutely.

                                            I don’t know if any of this helps or not, but I understand the weighing of pros and cons. I’d still do it again knowing what I know now, although reluctantly. Eat your favorite meal the night before you start the pills (and dessert)! You’ll be glad you did (one way or the other). Good luck and best wishes!

                                            Daisy2018
                                            Participant
                                              Thank you very much everybody who responded.

                                              I don’t log in here that often. The anxiety hits me pretty hard.

                                              I m glad some people feel somewhat normal on these medications. I was prescribed 6/6 pills. I asked my doctor if I can go on a vacation before I start treatment. My sons wanted to do last trip before all this mess will start. My doctor approved it  so I just came back.
                                              Quality of life is vitally important. I don’t want live and feel like crap all the time. What’s the point?  I guess somebody would argue that alternative even worse not living is worse than still living and feeling semi crappy. I didn’t feel anything on Keytruda, nada, nothing! The surgeries were tough. Doing dressing changes, hoping on a crotches for a month.  Having drain in my leg for a month sucked. The lymphedema is still there and it hurts. I try not to pay attention and exercise the heck out of it.

                                              I still want exercise, walk my dog, do my chores around the house, work, have intimate relationship with my significant other. Oh and my long thick hair  I want to keep.
                                              Is it too much to ask when you have cancer? JK.
                                              I think I would prefer to have a round of chemo and radiation, pray it worked and then recover. Not just to take poison forever until it stops working.

                                              Yes, I was thinking I had missed my window of getting Covid 19 vaccine. I was just not sure while getting Keytruda.

                                              Taking this medications and getting vaccine sounds like going over board with amount of poison at one time.
                                              I thought I would get some sort of the same reaction you had  if I double up with my meds and vaccine. Hey, I read an article when one man had Non-Hodgkin’ lymphoma with mets all over his body and he got Covid. He had a scan after he recovered and his mets were gone. Doctors were saying Covid 19 virus made his T-cells create immune response to cancer. There were several cases like this in the world.
                                              I know it sounds  pretty illiterate not to get vaccine and hope your cancer will disappear if you get Covid. It won’t happen.

                                              My doctor wanted me to do a scan again before starting treatment since I had this sarcoidosis like lesions and they didn’t know how to figure out where tumors were and where sarcoidosis were. They didn’t want biopsy every lesion.  I hope I didn’t grow too many mets on my vacation. Costa Rica was awesome!
                                              Thank you everybody again for listening and taking your time to response. God bless you all and get this horrible  disease out of our bodies, please!

                                              I wonder in 100 years science will probably find a cure for it. We all are just born too soon.

                                               

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