In June – Sept 2019 I made it through 4 rounds of ipi/nivo “flip dosing” (more nivo than ipi to reduce severe side effects) as treatment for my progression to stage 4 with brain Mets, along with cyber knife. I then did 4 more doses of nivo, stopping because of severe neuropathy in my arms and hands, and I was NED.
- August 19, 2021 at 9:23 pm
I had a recurrence in Nov 2020 with a tumor on my spinal cord, which has been treated with surgery, radiation, and Taf/Mek since Jan. My scans have been improving / stable until now.
Monday my brain MRI showed 2 new Mets. This is the first time I have had something new pop up while on active treatment. Obviously, the taf/mek isn’t doing so well in my brain so my oncologist wants me to go back to immunotherapy, starting with the standard dose of ipi/nivo hoping to get to 4 doses again.
Has anyone ever done a second round of the combo??? I have never heard of anyone else doing this before — but I’ve been assured by my team at MDA that they have (and I definitely truat them) — and I’m worried that my side effects will come quicker and be more severe this time. Any insight the anyone has would be appreciated! Thanks!
ThreefittyParticipantI did the combo, getting 2 rounds w/ippi before having to stop due to colitis. It stopped my progression, but not for long. My MD speculated the amount of infliximab on my colitis recovery may have limited the efficacy of treatment.
- August 20, 2021 at 10:13 am
I got the combo again almost a year later, with reduced ippi. Only got one round in. Again good results – not NED like the first time, but stable.
Now on Optivo maintainence and stable for 4 months. I have brain mets and am braf-wild so hoping like you for some immuno impact in the brain. Optivo causes me no problems.
Best of luck this is increasingly a well-trod path, methinks.
Here comes a blast from the past. In January 2012, I was accepted into the first Ippi/Nivo clinical trial. There were 53 of us from Yale – New Haven and Sloan Kettering. Our trial consisted of 16 doses of Ippi/ Nivo. October 2013, I lost function of my pituitary, adrenal and thyroid glands. Will be a lifer with prednisone and levothyroxine. MK, I wish you the absolute best. Doctor Allison and Doctor Honjo are my real life heroes.
- August 20, 2021 at 1:57 pm
Wow 16 doses! My adrenals are already shot from my previous immunotherapy and steroid use, and my thyroid is borderline and being watched closely. As I’ve been told, once your endocrines are gone, you can’t make them worse! So that’s a plus.
- August 20, 2021 at 3:17 pm
Did you have any of the other side effects?
And did the trial make you NED?
During my second craniotomy, I developed a blood clot in my ankle. It was stabilized with an IVC filter. The clot was so large that it completely shut down my inferior vena cava. Took many years to have alternate veins develop.
- August 20, 2021 at 10:00 pm
January 2012 – melanoma in brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.
August 2012 – NED Still riding the train. I’m very fortunate. No complaints.
MK, I wish for the same results for you. You will be spending some time in my prayers.
<p style=”text-align: left;”>Ironic that this is the exact question I came to ask as well. My husband had 4 ipi/Nivo combo treatments and then 4 just Nivo alongside WBR for brain mets in March 2018, had to stop because of multi system overload but he got to NED by Jan 2019. Aug 2021 he has a spot that is reactive in his neck but because of a prior neck dissection at the site of primary they couldn’t get a big enough needle around the remaining arteries for a good biopsy sample. We are now scanning and watching and waiting but have been told that he will go for round 2 if there is any development. Bracing for impact, it’s hard to go back at it after you know what it was like the first time.</p>
- August 23, 2021 at 5:49 pm
Chris’ wife, let’s hope that this reaction is a mute point in the future.
- August 23, 2021 at 8:24 pm
There are people that are no longer active on this sight, they were dealt a worse hand of cards than immunotherapy side effects.
Best wishes Chris and his wife, I’ll see both of you in my prayers !!
Chris’ wife, I apologize if I come over as too cold or hard. I do hold myself to the same standards. During my sixteen treatments of Ippi / Nivo, I suffered plenty of adverse side effects.
- August 24, 2021 at 8:47 am
During the lowest point on my melanoma journey, my marvelous , eighteen year old son died by suicide.
Melanoma at it’s absolute worse, will never ever come close to the pain I felt at Kyle’s death. Once again, wishing the best for Chris and you.
Thanks for your well wishes John and I am really hoping that there is enough of that magic sauce still in his veins to handle whatever it is that seems to be happening.
- August 25, 2021 at 2:54 pm
I’m very sorry to hear you lost your son, especially at such a hard time in your life. I can’t nor do I ever want to imagine how painful that much have been. Death often puts things in to a different perspective. In 2018 Chris has hit stage 4 and just as things seemed to get better in Jan of 2019 I lost my little brother in a pretty tragic way as well. And then 2020 needs no introduction. Sometimes the punches come in so fast it gets pretty hard to roll with them.
I live in BC Canada and in 2018 our government didn’t even fund combination therapy yet. We were lucky enough to get on to a trial of sorts funded by Bristol Meyers Squibb, so as you can imagine we don’t have a large pool of people to ask questions to. Doctors can tell you so much but it’s not like having the people here on this forum to get the human stories from and man oh man are there some really heart breaking stories on here. But it’s also wonderful to hear about people like you who are carrying a torch of hope.
Death is certainly a much worse sentence than side effects. It’s hard to convince a young man who has already lost so much physically that the above sentence is true sometimes though. He says to me he is cursed to be a 34 year old man living in a 90 year olds damaged body… and I always tell him when he makes it to 90 years old he will probably still be thinking that same notion.
Fingers cross for your continued ride on the NED train. You carry our well wishes with you.
guynamedbillyParticipantI have done the full 4 cycles of Ipi/Nivo 3 times so far, and a 4th is a possibility that my Dr has talked about. My tumors seem to respond to the Ipi, but then after switching to a maintenance Nivo, they slowly creep back in. It’s never made me NED, but it’s worked at keeping things mostly stable so far.
- September 3, 2021 at 1:39 am
I don’t think the side effects got worse each time, especially since they are coming up with different ways to manage them. So far, the trifecta of Ipi/Nivo/Tocilizumab has worked best for me. Toci is an anti-inflammatory used to treat Rheumatoid Arthritis, but it was also extremely effective at stopping side effects for me. I know there are other anti-inflammatory drugs they are trying too.
Given what you are all dealing with, these reports on immunotherapy after having progressed on immunotherapy may interest you – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2021/09/ipilimumab-or-ipinivo-combo-after.html
- September 5, 2021 at 9:07 am
Wishing you all my best. There is hope!!! celeste
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