Has anyone been on this therapy? It looks to be the way I’m headed. My doctor says that it was recently approved by the FDA, the concern will be getting insurance to pay for it.
- August 28, 2020 at 1:11 pm
I started with ipi/nivo and after a good early response, I’ve progressed. Because of the virus, the intralesional trial he wanted me to enroll in didn’t open in time, and the amount of progression I’ve had has pushed us towards needing to do the BRAF inhibitors. But he wants me to stay on the nivo, because of my early response and some vitiligo that has shown up on my arms. He’s hopeful that the BRAF inhibitors will work in the short term and the nivo will work in the long term. I had a nivo infusion yesterday, and the Braftovi/Mektovi should be delivered this morning. Another infusion scheduled for 9/17.
There doesn’t seem to be a lot of recent info out there. Curious if anyone on the board has any experience with it this therapy. Thanks!
gopher38ParticipantIt sounds to me like you’re following the right path. I’m for continuing the immunotherapy as long as possible if you think that it might be having even a partial response and the side effects are manageable. Hopefully and probably – from what I’ve heard – the targeted therapy should have good short-term effects and might have good long-term effects. And you’ve got your eyes on the intralesional, about which we’ve heard some great success stories in general, if things don’t work out as planned. Not having a plan is one of the worst aspects of this, but it should like you do have one, which is helpful. Good luck with the Braf/Mek.
- August 28, 2020 at 1:51 pm
Thanks for the positive words! I haven’t had many side effects from the ipi/nivo at all – some nights of low grade fevers, chills & aches, and then the vitiligo. I think that because I’ve tolerated the immunotherapy so well he has high hopes that the triplet won’t be too much worse on me.
- August 28, 2020 at 2:16 pm
- August 28, 2020 at 2:51 pm
Here is a link to a post from 2019 on the subject of targeted therapy combined with immunotherapy that includes 7 abstracts of research articles dating as far back as 2015: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/08/treating-melanoma-by-combining-targeted.html Granted none of these reports are using the Braftovi/Mektovi combo as the targeted therapy as it is newer.
Here are the posts I have on the Braftovi/Mektovi combo: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=braftovi
For what it’s worth. Hope this quadruple punch will be exactly what you need and side effects will remain minimal!!! I wish you my best. Celeste
- August 31, 2020 at 3:38 pm
So I got my nivo on Thursday, and then Friday morning the Braftovi and Mektovi was delivered, so I started on those as well.
About 2 hours after I took the first dosage of the day, my eye lids felt sort of funny, fuzzy almost. Not the eyes, just the lids. The fatigue was starting to hit me as well, so I went home to rest for a bit. When I turned on the TV, I noticed that when looking at text, my vision had become somewhat grainy. Difficult to describe. However, a rise in blood pressure could happen on these ones, which might lead to vision changes, so I was taking side effect notes. No headache and I wasn’t dizzy. And it went away after a couple hours.
So I started them on Friday, and now on Monday, I’m happy to report that it seems to be working as quickly as I had read. The swelling around my neck was noticeably smaller to my wife, and I can move my head around much easier. She said to me, “You turned your head to look at me, instead of your whole torso!”
So, good news so far, and I really hope it holds out, and that I can tolerate the triplet. I was up in the night last night with diarrhea, and a little this morning. Stomach is a bit off. Let’s hope it passes – until then I’m on the ol’ BRAT diet. I had a banana and toast for breakfast and rice on deck for lunch. Fingers crossed!
That’s great. I’m currently on the triple combo as well. At about 9 days from my start of taking the braf/mek I got fevers. Stopped taking it for about 5 days and then restarted. After about another month on the drugs the fevers returned. Stopped again for about 5 days and then restarted. And then I’m pretty sure about another month after that fevers again. Stopped for the 5 days and restarted. I’ve seen good results after I had progression/new spots from the Opdivo alone. Have not done the Ipi/nivo combo yet.
- September 3, 2020 at 5:42 pm
Thanks for the input! When did you start on the triple combo?
- September 3, 2020 at 7:35 pm
Funny thing about the fevers – I had them for a couple weeks when I first started on the ipi/nivo combo, and that’s when I had my initial response to them and things shrunk. I’m always on the lookout these days for another fever, hoping it means I’m responding to the anti PD1!
So its been an eventful few weeks. I was on the targeted meds for about a week and a half before the fevers struck. I could reign them in with tylenol and advil, but my doctor said to take a break from the meds and wait to restart when I had been fever free without the help of Tylenol for 24 hours. So I took my morning dose Saturday morning, and by that afternoon I was feeling lousy again, spiking another fever with aches. That night was the whole fever bit with the chills and teeth chattering under an electric blanket. By the next morning the aches were much worse and I was sore all over. By Monday morning, I could hardly move. I let the office know, and they said that if I wasn’t better by that evening, they’d see me Tuesday morning. I was worse by that night, so I went in on Tuesday morning. I was legitimately worried about physically getting into the office. All my joints were swollen and stiff. It was hard to walk other than shuffle, and I had to psych myself up for 5 minutes just to stand up. I had help getting into the office Tuesday morning, and we decided to start steroids that day, and then restart the targeted therapy in the morning. He was pretty flabbergasted – the fevers are a common side effect, but not the joint pain to this degree. He’s actually leaning towards the fevers being attributed to the Braftovi and Mektovi and the joint pain to the nivo – so perhaps this is a good thing and I’m having another response to the nivo. So maybe, things are going according to plan. The targeted therapy has taken the wind out of the melanoma’s sails, and now the nivo is back on the job. A man can hope, at least.
- September 17, 2020 at 4:06 pm
The prednisone started working by Tuesday evening, and by yesterday I was much more mobile. I restarted the Braftovi and Mektovi, with no sign of a fever so far. Today, I’m able to be at work and mostly normal, with just stiff hands, shoulders and achy legs. And I have an appointment on the 24th for my next infusion. So, onward we fight. Melanoma be damned.
That sounds rough. I have slight joint pain occasionally but I attribute it to being out of shape with these shakes that pop up every now and then. I started Nivo in February and the targeted therapy in mid May. I just had another bout of chills/fever last night so stopped the meds. Will restart them again once I see no fevers or at the 5 day mark. So far this rotation seems to be working for me. Next scan is end of October so not sure if its still kicking ass or not yet. My next infusion is the 28th.
- September 21, 2020 at 3:46 pm
Fingers crossed its still doing its thing. We’re still paying the price, so its only fair that its still working.
- September 21, 2020 at 6:44 pm
Yesterday was the last day of the steroid taper for me. Achy today, but I don’t think I feel a fever coming. Not yet, at least. Every day is something new, it seems. Never a dull moment!
So, its been somewhat eventful lately! Seems to be a common theme with melanoma.
- October 5, 2020 at 6:52 pm
I finished the prednisone taper pack, and was good for about a day. Still no fevers, but I could feel the joint pain coming back. My hands were swelling again and my shoulder was killing me. So I was started on 30mg a day of prednisone, with instructions to taper down 5mg every 7 days. Tomorrow I start 20mg.
Everything was going well, and I was feeling good. Around 130am on Friday though, I had stomach cramping, and then some diarrhea, and there was dark red blood in it. So Friday morning, I let them know what was going on, and it was suggested to head to an ER to be checked out to make sure I wasn’t about to go septic.
I felt fine, to be honest. No more stomach cramping, a solid bowel movement (though still dark red) so it seemed odd to go to the ER, but we don’t mess around with bleeding. My lab work was fine when I got to the ER, and I was sent for a CT scan that showed mild inflammation of the upper colon. I guess because they couldn’t say exactly what the cause of the bleed was, they decided it was best to admit me to the hospital on Friday afternoon. I spent Friday night and most of Saturday in the hospital, which, while very nice, was not where I wanted to be, especially feeling as good as I was. However, they kept on top of my bloodwork and while my hemoglobin was still within normal levels, it was dropping slowly, and was at 11.6 on Saturday morning. They wanted to keep me there indefinitely – they were hopeful I would be able to get a colonoscopy by Monday, but no promises on scheduling. And they preferred I stay at the hospital until they could scope me.
After much campaigning for me to please wait at home (if all we’re doing is watching and waiting until I can get scoped) they decided to do one more round of labs on Saturday afternoon, and if my hemoglobin was still dropping, then I should stay. If it was stable, I could go. Mercifully, it went back up a full point! So they let me go.
By yesterday morning, stool was still dark, but no more dark red blood. So, steady as she goes with the Braftovi, Mektovi and prednisone. Never a dull moment, I suppose. But the tumors continue to slowly disappear off my neck. And I’m pretty sure the vitiligo on my arms is progressing. So after all that, I’m happy!
So, the GI bleed, as quick to resolve as it was, prompted a colonoscopy. It showed ‘severe inflammation’ and a number of ulcerations, just on the right side of the bowel. After the GI doc told me that she had never seen that amount of inflammation before, just read about it in the literature (woohoo!) she said that it doesn’t look like the beginnings of colitis or crohn’s, and doesn’t think it was actually caused by the meds. Rather, they’re leaning towards it being caused by the advil I was taking because of the joint pain, plus the prednisone. Sounds like the diagnosis was made mostly because of how it began to resolve once I stopped taking advil. So a follow up in 2 months to make sure its all set. So that’s good.
- October 23, 2020 at 8:35 pm
Had my regularly scheduled visit with Dr Sznol yesterday. He decided I was in good enough shape to get another infusion of nivo, even if it might bring on another bout of arthritis. I was very happy to hear that – after we spoke and he gave me the once over, he actually excused himself from the room for a bit to think about whether or not I should get the nivo – we both ended up agreeing that the possibility of more joint pain was an acceptable risk. Especially in light of the fact the vitiligo on my arms has really taken off. Previously small spots have connected into larger ones, so he thinks that now that we’ve reduced the tumor burden with the Braftovi and Mektovi, the nivo (and maybe the ipi) can get to work a lot better. He used an analogy that made me chuckle: if you’re at war with an army of the same size, you can go back and forth for a while and never overtake the other side. But if you drop a big bomb on the other army and cut it’s size by 75%…you win!
Trying to stay on the winning streak!
- January 14, 2021 at 3:55 pm
It occurred to me this morning that I haven’t updated this thread in a while, so I thought I should.
The first thing, and most important, is that I’m still here!
The GI bleed never came back, and the arthritis hasn’t really been an issue. Sometimes an odd joint will be creaky (the middle finger on my right hand, for example, perhaps from overuse in 2020).
I’ve continued right along on the Braftovi & Mektovi with no breaks, and the same is true of the nivo infusions.
The new side effects have been strange, and strange has become the norm. Shortly after my GI episode cleared up, I experienced the strange phenomenon of an intense need to urinate whenever I exerted myself, even if my bladder was empty. That was another day spent in the ER, when I was told to follow up with a urologist at the end of it all. I think it was inflammation (what else?) somewhere down there making me feel like that – it calmed down over the course of the next week and hasn’t really returned.
The vitiligo has slowed, but not stopped. My skin feels very strange – sort of extremely sensitive. Bumping into things hurts like never before, for example. Very hard to describe.
The hair on my head is about 65% gone, including my beard. Most of my other body hair is completely gone. Any stragglers have started turning white.
The past few weeks I’ve been very fatigued. Most of us know what that heavy, welded to your chair fatigue feels like.
I’ve recently started having some upper GI issues. I feel bloated a lot of the time and don’t really want to eat, but then my stomach growls and hurts (sometimes nauseous) as though its empty. So I eat, but only eat a small amount before I feel full. If I eat too much, I get wicked heartburn. These symptoms seem to come and go, they’re not constant.
Like all of us, my hope is that the side effects are evidence of a response, especially the skin and hair changes. Of course, it seems like any tie between the two is somewhat tenuous and I’m trying not to get my hopes up. I have scans next month that will tell the tale for better or worse, but until then I’m trying to keep the faith!
- January 15, 2021 at 2:02 am
Thanks for posting. I think your news seems pretty good. The vitiligo is usually a good sign; I never had it but my hair did turn grey (well a kind of white grey) – my oncologist said it was I was just getting old, but I think it could have been stress and maybe vitiligo.
I am wondering when your last scan was – because I am a little optimistic for you, and its great the GI side effects seem to be easing and you seem to cope with the continue nivo. I know the next scan will be a pain and stressful, but I am hopeful too, seems there is good reason for this ????
Best wishes Mark
- January 18, 2021 at 5:20 pm
Thanks so much for the kind words. I realized over the weekend that I never posted about my scans!
I had CT scans in November, a couple months after starting the targeted meds. Everything had shrunk considerably or was stable. There were some very small and questionable spots on my liver and lungs, and they hadn’t changed. The disease in my axillary and cervical lymph nodes had shrunk considerably.
My visit on Thursday was uneventful – Dr Sznol thought upon palpation that everything seemed to be continuing to shrink, and the stubborn spots may well be scar tissue. Labs looked good, so I had another nivo infusion.
So things look good for now, and I’m trying to remain optimistic like you guys.
- February 10, 2021 at 10:50 am
I had new scans on Thursday, with mostly good news.
Brain MRI is negative.
Abdominal CT: “Stable subcentimeter nonspecific hepatic hypodensities. A few prominent but not pathologically enlarged lymph nodes in the periaortic chains are unchanged. No lymphadenopathy.”
Chest CT: “Except for a left subpectoral lymph node which has enlarged, overall, decreasing metastatic lymphadenopathy. Stable small nonspecific lung nodules.” With these notes: “Some of the lymph nodes contain amorphous calcification which may be related to treatment. However, a partially necrotic left subpectoral lymph node has enlarged now measuring 1.4 cm in short axis diameter, previously 1.1 cm.”
And the neck CT, where most of the action is: “Mostly a decrease in metastatic lymphadenopathy diffusely involving bilateral cervical levels, but with increase in central necrosis of multiple lymph nodes and several residual lymph node conglomerates. Exceptions include left cervical level VB conglomerate lymphadenopathy which has increased in size, left posterior chest wall lymphadenopathy has increased in size, and attention on follow-up is recommended.”
Again, the issue of whether or not central necrosis is a good thing – is the tumor dying, or is it eating healthy tissue? I guess only time will tell. Until then, less disease = a reason to celebrate!
- February 13, 2021 at 12:06 pm
Glad to hear you are getting good results despite your issues! I am following your progress closely…I recently started on the ipi/nivo combo when I stopped responding to nivo alone after 9 months. I did request some information on the Braftovi/Mektovi therapy to discuss with my doctor in the event the combo doesn’t work for me; my initial derm report shows I am BRAF positive so could be an option for me as well. Thanks for sharing your progress!
- February 16, 2021 at 11:07 am
Thanks for following along! It’s very helpful to me to be able to identify some commonality between myself and a fellow melanoma warrior that is having some amount of success, so I hope I can provide some of that to others!
The two spots that seem to have enlarged aren’t causing my doctor any particular amount of heartburn, yet. It could be inflammation from the nivo starting to work again, or it could just be stubborn disease that isn’t responding. I guess only time will tell.
How are you feeling now that you’ve started with the ipi/nivo?
- February 17, 2021 at 10:56 am
Hopefully, as you said, the two spots that have enlarged are due to nivo response. Fingers crossed!
I am doing okay so far on the ipi/nivo (just over 3 weeks now), the biggest issues have been rash/itchiness and fatigue. I didn’t really have fatigue with nivo only, but I have been pretty tired most days on the combo. I’m a runner so adjusting has been difficult; I run when I feel like it and walk when I just don’t have the energy, and I need more sleep. I’ve had some tummy aches but nothing too bad yet. My lymph node has enlarged quite a bit since the first infusion but they said that was to be expected. I go back Friday for my checkup and next dose, hopefully everything will look good.
Best of luck to you! Keep us posted!
- March 1, 2021 at 7:59 pm
Wanted to ask a few more questions about your triplet treatment, as I don’t seem to be responding to my ipi/nivo combo other than side effects after two treatments. I had a liver biopsy last week to rule out a spot we have never been able to identify (came back negative thank goodness) but my lymph node is continuing to enlarge at a semi-rapid rate. I am scheduled for more CT scans this weekend and then go back to my oncologist to decide what to do next. My current options are removing the lymph node if there is no other evidence of metastases, or possibly starting targeted therapy like yours. I see you’ve dealt with a lot, so just wondering how you got to the point of the decision to start the targeted therapy? I may not have a choice if they find anything new or concerning with the scans, but any advice you can provide prior to my appointment would be greatly appreciated.
Hope you continue to see improvement!
- March 3, 2021 at 10:28 am
I’ll try to do a quick synopsis of how I came to be where I am. When I was diagnosed in February 2020, the disease was all on my left side, and all in my lymph nodes, though it was extensive. I Initially saw an oncologist who staged me as 3/4, because it hadn’t spread to anything but my lymph nodes, and just on the left side. Nothing ‘distant’. Shortly after, I had a consult with Dr Sznol at Smilow/Yale and decided to get my treatment there. He wanted to be as aggressive as possible and I agreed (people keep telling me how young and healthy I am, though it doesn’t feel like that) so he staged me at 4, I think partially to make sure there would be no issues with insurance and going right to the ipi/nivo.
At first I had a great response. The tumors that were palpable visibly shrunk. 3 months later there wasn’t as much progress on my first set of scans as we would have hoped, I think because my response to the ipi/nivo was already waning. But we stuck it out for the 4 combo does, though, because I was tolerating it well. I did have to go on a short course of Prednisone for some pretty bad joint pain that had me just about crippled, but that was it. After the 4, we started talking about trials, and he thought I would be a good candidate for an intratumoral trial. They would inject a few of the palpable tumors and I would stay on an anti PD-1, I think it was pembro for this trial. However, it had been closed to enrollment due to Covid. So we stuck out the monthly nivo only infusions while waiting for the trial to open. During that time, it became obvious that I was no longer responding, most likely because of my high tumor burden. So they pushed quite hard to get me into the trial, and had the paperwork ready on the day of my visit at the end of August. However, when I showed up, the visible disease progression around my neck sorta knocked his socks off. The change from my last visit in July to August was drastic. He left the decision up to me, but it was his opinion that I didn’t really have time to wait and see if this trial drug would have any effect on me. The tumors had already started to push on my esophagus and swallowing certain things required some concentration and lots of chewing. A recent scan noted that the disease was occluding my carotid on the left side. He thought I’d be better served by starting the targeted therapy and getting the progression under control. We discussed continuing the nivo in combination with the targeted meds – the ipi/nivo has been described as potentially curative, while the targeted meds generally are not, so it was important to me, maybe psychologically more than anything, that I stay on the meds the could potentially cure me, and that I wasn’t just jumping to a short term band aid.
I just want to take a minute to say for anyone reading this in the future, the targeted meds are not always short term. There are lots of examples of people being on them, effectively, long term. So don’t be discouraged!
Dr Sznol’s further opinion was that if we could get the tumor burden reduced, I may respond again to the anti PD-1. So we elected to go with all three, again, because I had been tolerating the ipi/nivo so well. The targeted meds were as advertised and dramatically reduced the size of everything in short order (I noticed a difference inside of a week, when I was able to turn my head without having to turn my whole torso). There have also been encouraging signs that perhaps I am having another response to the anti PD-1. I’ve had persistent vitiligo on my forearms and a couple other spots, and whats left of my mustache has turned white, and that seems to be traveling south to my beard as well.
The two scans I’ve had since I started the targeted meds proved out what we could see and feel, that everything is shrinking. Well, most things. Two spots (that I can feel, of course) have gotten slightly larger for some reason, while the rest continue to shrink. So, most things are trending in the right direction.
I’ll be honest, the side effects have been much more noticeable since I started the triplet. My joints don’t necessarily ache constantly, but I’m not nearly as flexible as I used to be. I feel like a creaky old man! My skin is also very sensitive, I’m not sure how else to describe it. If I bump my leg on the corner of the bed I brace myself for how much its going to hurt. The fatigue is much harder to fight through. Recently I’ve been dealing with digestive/upper GI issues. Bad heartburn, feelings of indigestion. I take a Zofran if I feel like I need it for nausea, and I take a PPI every day for the acid. Really though, these things hardly move the needle as far as adverse events go, all my labs have been perfect (again with being so healthy, if it wasn’t for this darn cancer!) so we continue on and try not to complain too loudly about feeling lousy!
- March 3, 2021 at 10:56 am
I hope everything is looking up for you. Very pleased to see that you have Dr. Mario Sznol as your oncologist.
I started with Dr. Sznol back in 2008. My melanoma had progressed to my brain, spinal cord and many organs.
Craniotomy and Gamma Knife from Dr. Chiang and then Dr. Sznol put me into the very first clinical trial of
Ipi / Nivo. Eight and a half years later still NED. Smilow is a marvelous cancer, you are in very good hands.
Thank you, Tim, for the detailed response! I had a brief conversation with my nurse navigator about the targeted therapy when we got my liver biopsy results and just wanted to have an idea of what it might be like if we decide to go that route. My care team at UNC is also amazing, and I couldn’t ask for better care. I see them on the 12th and will let you know what we decide…thanks again! Take care!
- March 3, 2021 at 8:33 pm
- March 3, 2021 at 1:19 pm
Thanks for the kind words! It’s always encouraging to hear good things about Dr Sznol! It always makes me smile when I’m Dr Googling something and come across him as a trusted voice in the community, speaking about the latest and greatest thing.
I’m very happy that he’s taken such good care of you! My aunt is also under his care – he shepherded her through her Interferon treatment all those years ago which eradicated her stage 4 melanoma.
I went for a consult with an ENT surgeon when the tumors in my neck were blowing up and they wanted to evaluate my swallowing, and I had a conversation with a nurse about my treatment so far. I mentioned that I was being treated by him and her eyes lit up and she said,”He’s like world renowned! You’ll be fine.”
Enough gushing – suffice it to say that I highly recommend him and the rest of the Smilow team. They’ve been fantastic. They even let me skate on parking once, when I forgot my wallet!
- May 25, 2021 at 9:30 am
My insurance (United) did cover it, though without saying so, it seemed like there were some behind the scenes things that went on between the hospital and the insurance company, I don’t think there was ever even a question that it was going to be covered.
However, at the beginning of this, the first oncologist I saw sent tissue from my biopsied tumor to Foundation One for the BRAF testing, which United declined to pay for, even after appealing, and even after I started taking the medication that I could only take if I knew my BRAF status.
Dealing with insurance is unfortunately a whole other ugly side of this. Sometimes I think that the institution who’s care you’re under might make a difference – the larger cancer centers might have more muscle to flex in this area with the insurance companies. Or maybe not! It’s frustrating and maddening.
- May 25, 2021 at 10:24 am
Like Tim, I also have United HealthCare and while I am not on the triplet (yet at least) they have covered Opdivo, Opdivo+Yervoy, and targeted therapy (Braftovi+Mektovi and now Trafinlar+Mekinist since I could not handle the Braf/Mek) during the course of my treatment, along with the multitude of scans and biopsies. The only issues I have had were with some of the CT scans, but the hospital (UNC-Chapel Hill) has been able to get those cleared up for me. And luckily my initial derm testing confirmed my BRAF+ status so I didn’t have to deal with that one. I know I have been very fortunate thus far to not have to deal with issues with insurance, but I’m about to have lymph node surgery so we will see how that goes. Hope you can get your issues resolved and best of luck to you!!
Mark 2020ParticipantHi. I was diagnosed with stage 4 melanoma in 2020. I did the 4 treatments of Opdivo/Yervoy and a year of monthly double dose of Opdivo till immunotherapy stopped working 2 weeks ago. Now I’m on the Mektovi / Braftovi targeted therapy. 9 pills in morning 3 at night. Very slight side effects so far – diahrea and spots before my eyes that went away in an hour. I’m going to switch to 3 pills in morning 9 at night hoping side effects, if any, will be less overnight. I learn so much from these threads about what to expect so thank you all for taking the time to keep us posted. I wish us all a very positive outcume.
- May 30, 2021 at 10:29 am
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