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.
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