› Forums › General Melanoma Community › Stage IV failed immunotherapy next steps?
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sister of patient.
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- March 19, 2019 at 12:10 am
Hi all,
I hope everyone is doing their best and winning their fight against the beast.
I could use some advice from the wise and generous folks that frequent this site. I have been battling the beast at stage IV for over six and a half years now. I’ve had mets in my lungs, brain and sub q and I’m still fighting. Currently, I have mets that are all sub q in fat. Lungs are clear and brain is clear. I am BRAF positive and have been a super responder to Taf/mek and now Braftovi and mektovi but I’ve developed a group of mets that are now resistant. If I can’t conquer these resistent mets, eventually they will spread to a more dangerous location. Any suggestions for next steps? My onc is offering two phase I trials or one phase II trial or chemo. Brain mets are gone (or stable, not sure if two spots are stable mets or not cancer at all).
Any suggestions or links are most welcome.
Cheers!
Maggie
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- March 19, 2019 at 12:19 am
Hi Maggie,
Sorry to hear of your stubborn Mel-meat. I have a few myself.
Are the subqs in a place where they can be surgically removed? This is my plan for the my treatment resistant subq. I'll see the Rock Star on Monday. At that time we'll schedule surgery.
Just seems like you've been through it, and minor surgery (if it is minor) maybe a good way to get rid of the remnants.
Shalom,
Julie
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- March 19, 2019 at 12:40 am
Hi Julie! How are the knees?
I think we’ve all been through it to a degree. I may have had to deal with brain mets but so far only one type of cancer and my knees are fine. Too many sub q’s to count. For what it’s worth, the resistant buggers seem to be travelling through my lymph system not blood. Unfortunately, I don’t have just a few that can be removed. The lumps make it hard to get comfortable a la Princess and the Pea. Really glad to see you on here. I hope you get that pesky subq taken care of. I expect Dr. Fischer would do the surgery if you do it at St. John’s. Nice guy but makes me wonder when they started to let junior high kids do surgery. He’s grown a beard now but he still looks young. I’m sure he is a completely reasonable age, I’m just old. Good luck with the removal!
Cheers!
Maggie
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- March 19, 2019 at 9:08 pm
Hey Maggie,
The Knees are great! Best decision I ever made!
Well bad word! I'm sorry to hear your subqs can't be resected! is T-Vec or some other kind of injectable an option. T-Vec hasn't really worked for me– had a very bad reaction to it, but I understand that this is pretty rare (It's rarely a good thing when the docs say "Hmmmm, I've never seen this before".
You responded to Pembro? Would rechallenging mel with another round of Pembro work? Just thinking out loud here.
I've not met the Jr High Surgeon, yet. Dr Essner has done all the previous ones and I've been super happy as he'll numb me up locally and then whack them out in in the procedure room. I like not having the general.
Will be watching and praying that you find a good response for the pesky lumps!
Shalom,
Julie
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- March 19, 2019 at 11:15 pm
Hi Candi,
Sorry I missed your question earlier. No, the T-VEC didn't really work.Because I had a massive herpes reaction at the injection site, we decided not to continue them anymore. I think the tumor that was injected has gone, but the other 2 uninjected "bystander" tumors are still there. So I figure it hasn't worked.
I'll know more Monday, but I'm anticipating surgery to remove the bystanders.
Julie
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- March 19, 2019 at 7:16 pm
I don't know about your question, but I love your user name. It says dizzy and deaf to me. I can relate to that sentiment as I have Meniere's disease as well as melanoma that is NED right now. 😉
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- March 19, 2019 at 8:58 pm
Hmm, I also have Meniere's Maybe it's a thing?
Julie
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- March 20, 2019 at 5:16 am
Julie, I’ve had bi-lateral Meneires since I was thirty (now 52). Maybe it is “a thing”. I use cochlear implants to hear as I rode Meneires all the way to burnout. At least I don’t get vertigo anymore. Good riddance to that! How’s your hearing? Sorry if we’ve discussed this before and I’ve forgotten. If so, I’ll blame it on brain damage.
Cheers!
Maggie
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- March 20, 2019 at 4:59 pm
Hey Maggie,
Yup Meneires at 30! Must be a thing. Mine started single sided (left). I rode out the dizzy only to have it return on the other side side 10 years later. Now every once in awhile I have a spin, but it doesn't last long and it worries me more than anything. And then it goes away. Fun times!
My hearing sucks. I'm in the severe range so without my HAs I hear nothing. But HAs help and for that I'm very grateful.
I still have some hearing so CIs are not for me, but how was that! for you?! I imagine they took some getting used to, yes? How well do they work for you?
Peace,
Julie
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- March 20, 2019 at 5:30 am
You read my username correctly. I created it many years ago as an email address to use for medical issues. I had my first vertigo attack when I was 29. Went bilateral at 30. Moved on to drop attacks in late thirties and reached total bunout shortly after. Got first cochlear implant in 2009. Discovered first melanoma tumor in lung in 2012 (already stage IV at that point). I’d have to say my experience with melanoma has been pretty easy compared to Meneires and I’m including my brain tumors that resulted in seizures and physical disabilities. I would not wish Meneires on my worst enemy. How’s your hearing?
Cheers!
Maggie
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- March 21, 2019 at 5:10 pm
Wow – Maggie, Julie & Saera – thank you for having this discussion – it gave me an "aha" moment (with regards to my sister, Leisa, and drop attacks she's experienced) – I rarely fail to learn something new whenever I come on the board.
Maggie – I'm so sorry that you're dealing with active disease again!! I can't add alot either other than to wish you the very best treatment available and to say that I've been following all the info about "injectables" too and believe that they hold much promise. I'm going to hold the very best thoughts for you in mind!!
Barb
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- March 20, 2019 at 12:20 pm
Okay, so three of us with Meniere's and melanoma? Hmmm. makes you think doesn't it? I got sick with melanoma in March of 2016. Had sac decompression and shunt in January 2017. Diagnosed with melanoma in August 2018. Now have what I think is another primary, going for biopsy Monday.
I wish you all the best with your treatments. I wish I had better answers for either nasty beast. As I'm sitting here worried about my upcoming biopsy, my ear is full and tinnitus is booming. I can no longer tolerate scope patch for attacks as they make my heart rate drop into the 40s. So I just have to pray my shunt keeps working and I can alleviate some of the stress as it's terrible for both conditions, yet they both cause stress.
Round and round we go!
Best of luck to all… much love.
Saera
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- March 19, 2019 at 11:24 pm
Maggie, sorry to hear. I might consider a phase II trial where safety has been demonstrated in phase I and you're guaranteed to get the drug (maybe just not the right amount)? If you can ride it, you may be able to return to BRAF-MEK after a break.
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- March 20, 2019 at 5:41 am
Thanks for the input, Mat. My concern is that every time I have stopped BRAF/MEK in the past (twice so far), I have developed bleeding brain tumors in about two weeks. Those suckers show up FAST. I don’t think even my oncologist realizes how quickly they grow when I stop. Or maybe he does and I’m just being greedy wanting more time. Life is good. I’m not ready to quit it yet.
Cheers!
Maggie
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- March 20, 2019 at 6:54 am
Hi
I haven’t had it as rough as you have, but I had a few rounds of Ipi/Nivo last year and 9 months after stopping due to side effects experienced progression. As I responded well initially last time I have just re-started Nivo.
My point is you had success with Keytruda before can you re-challenge or try Ipi/Nivo?
best of luck
Mark
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- March 20, 2019 at 6:44 pm
Hi Mark,
As far as I know, I did not have success with Keytruda. I was on Keytruda and Taf/Mek at the same time. I was taken off Taf/Mek to see if the Keytruda had kicked in and immediately grew brain tumors. So it would appear that Taf/Mek was doing the heavy lifting. I don’t have any evidence that Keytruda or Opdivo have ever contributed to any reduction in tumors. Good luck with the Nivo!
Cheers!
Maggie
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- March 20, 2019 at 3:00 pm
Hi Maggie,
I'm so sorry to hear everything you've been through.
Sometimes Oncs ONLY offer patients clinical trials that are available to them at their site. You might want to consider look at https://clinicaltrials.gov/ and trying to find other trials that might fit your needs.
Just out of curiosity Who is you ONC and where are you being treated?
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- March 20, 2019 at 7:11 pm
Thanks, Candi. My oncologist is Dr. Steven O’Day at John Wayne cancer institute (clinic?) at Providence St. John in Santa Monica CA. I started treatment with him when I developed brain mets in 2016 and he’s gotten me cleared up a couple of times so no complaints. He was lead investigator for ipi (Yervoy) and presented trial results at ASCO. He is very creative and outside the box with his approach and is not afraid to push the boundaries on standard of care. I like that very much as standard of care doesn’t always work for everyone. Having said that, all the trials he is recommending for me he is running so there might be some bias in his recommendations. Although I am currently at a point where there is no clear next step for me. The only “mainstream” stage IV drug I haven’t tried yet is Yervoy. He is the expert on that one but wants me to join his trial for the “new and improved” version which is supposed to have fewer adverse events based on the science (unknown in humans – phase I trial). He would know what to be on the lookout for based on his experience with ipi. I’ll take a look at the trial link you provided. I was hoping someone might have a suggestion regarding what all the “buzz” might be on trials or treatments in my situation. Maybe I’m too far along at this point. Thanks for the suggestion.
Cheers!
Maggie
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- March 20, 2019 at 11:36 pm
Sorry for what you are dealing with, Maggie. Some of us were ratties in Phase 1 trials long ago….during the dark ages of melanoma, really…..in 2010 and a bit before…that led to the FDA approval of Yervoy, BRAF/MEKi and anti-PD-1 products (nivo and pembro) and thousands of saved lives, though, sadly, not ALL of those afflicted with melanoma. Scary? You bet. We didn't know if we would die or grow three heads. But…we went there anyway. And many of us have remained on this board to share what we have learned, researched and fought for with others. I wish you my best in whatever you choose. celeste
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- March 20, 2019 at 5:06 pm
Maggie, it's ok to be addicted to breathing! Wanting more is good.
Talk to the Doc. Show him the pattern and see what he has to say. I've found him to listen and be creative- and even to take my stupid ideas sometimes (the T-VEC fiasco was my idea).
Just a thought,
Julie
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- March 21, 2019 at 1:30 am
Dear Maggie and Julie,
I am not sure I can help you too much, but Julie I am still wondering if you are too negative on T-VEC. I know you contracted herpes (sorry 🙁 ) but you said it worked on one tumour and that's with only one dose.
For me the combination of one year of TVEC plus Keytruda seems to have worked when one year of Keytruda failed. Admittedly I have been blessed with low tumour burden so far (just one which keeps coming back in my lower left leg). But under keytruda that tumour slowly and steadily grew (although no spread which was a positive). Adding TVEC and the tumour then grew but then started to shrink and became so thin then stabilized, I went off treatment because it seemed no longer to be working and I had been on these for so long but on my most recent MRI they could not see it at all. Julie – maybe you were unlucky in that the virus had not been attenuated properly? (My doctor and nurse had to suit up for all TVEC injections and only after reading of your experience do I realise why, sorry!). Or maybe you have a strong reaction (I had bad fevers for my first few TVECs but these disappeared after 1-2 days) but also that might mean the immune system knows what to attack. Anyway, I know Julie it might be risky to go back to TVEC but please dont consider it a dumb idea or a misjudgement. Intralesionals worked for texmelanomex and seem to be working for me, combined with keytruda.
Maggie – I dont know how bad is your situation, if light burden then maybe TVEC or intralesional (Rose Bengal) might work. Others on this board have gone on to other trials like MrSaxde (Bill) and also GeoTony. If you have not tried ipi (I tried as adjuvant but side effects stopped me) then your onc's trial would seem to make sense, but keeping other trials in mind and being ready to travel for these other trials.
Maggie – I think you know what you are doing and are well-informed. I hope intralesionals might be an option if you just have a couple to deal with and they are accessible. But the safer ipi trial sounds interesting (why not combo it with nivo though?) as do the other trials our fellow board members are trying. And Julie good luck, sorry about the herpes, but I dont think your decision to go for TVEC was a bad one, for me TVEC combined with Keytruda may really have helped me and I think my doctor had to be pretty insistent to get the insurance approval for this combo (which is not really approved but which makes sense and may have saved my life, i dont know)
best wishes and good luck to both of you, and to fellow ratties on our board
Mark
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