As some of you know, in September I started a combination of Vem/Cobi with bi-weekly infusions of Atezo. One of the great things about this therapy is that I literally felt it working RIGHT away. One day I could barely eat from stomach pain caused by my lesions and 12 hours after my first round of Vem/Cobi, I felt so good eating stale crackers that I was literally crying.
- March 25, 2021 at 12:04 pm
In fact, I went from feeling so bad to so good that I was convinced that my next scans could even get me to NED. Well, those scans came and went in December and included a minimal decrease in tumor size, but not the Big Bang I was hoping for.
Fast forward to my next round of scans that happened on Tuesday of this week….and even though I still feel great the picture is a little grimmer. I saw a decrease in two mets, stability in the other three, but also a brand new met measuring 5.4 x 4.2 cm on my gastropathic ligament. Sigh….
So, I’m looking for my next treatment option. I’ve had positive responses to Nivo, Ipi/Nivo, and my current treatment. I’ve also supplemented these treatments with neurosurgery and radiation.
Today, my brain has officially crossed the three years NED mark, but tumors in my tumors remain: one (shrinking) mass in my lung, 4 mets in my abdominal peritoneum (2 shrinking, 2 stable) and one new met on my gastropathic ligament.
I’m evaluating my next treatment options and leaning hard toward a couple TIL therapies, which I’ve been interested in since I moved from stage 1 to stage 4 in March of 2018. I am just convinced that my immune system knows how to fight cancer (as seen by the success I’ve had with every therapy I’ve tried!) it just needs more recruits! I’ve been managing melanoma since I was 8 years old and diagnosed with a Clark’s Level 4 mole. I somehow managed to keep my melanoma at bay for the next 24 years until I had my beautiful baby girl in February of 2018. I’ve mentioned this before and I’m going to say out loud here for reference….I’m looking to be here for my daughter for the next several DECADES and I’m searching for the next therapy that can help me hit a home run.
Has anyone on this board done TIL? If not, I’d still love to hear from anyone who has had long-term success after progression following a positive response on multiple therapies.
Thank you for listening to me ramble!
- March 25, 2021 at 1:20 pm
Will put on my thinking cap and get back with any additional info I think of. But, immediately – here are my first thoughts:
- TIL sounds like a good option. While the general idea of TIL remains the same, it has come a long way and there are a various methods and protocols available now (some in recruiting trials – see #3 below). I don’t post a lot on TIL, but here is a link to a post from last year that has some pretty good info within as well as links to additional posts – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/til-act-for-melanoma-patients-past-and.html
- Have you had your tumor tested for mutation beyond those typical for melanoma? When folks aren’t responsive ENOUGH to current therapies, this can be super important. For instance, Maureen’s husband (from this forum) has responded well for years [after not responding to standard therapies] to drugs typically used to treat HER-2 breast cancer because his mutation reflected that. Here is one such trial that is doing this work: https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match
- I’m sure by now you are well versed with searching clinicaltrials.gov – but here’s the list of all trials currently recruiting for Stage IV melanoma patients – https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Stage+IV+Melanoma&term=&cntry=&state=&city=&dist=
Not sure is any of that is of much good to you, but there you have it. Will keep thinking. I wish you my best. Celeste
Thank you so much for the continued support, Celeste! I’ve read your TIL post before, but it was still good to go back and revisit it.
- March 25, 2021 at 3:21 pm
One question for you, and sorry if this is elementary. I know that patients have to essentially kill their immune system to do TIL. Does that mean anything my body has learned from Nivo, Ipi and the others would be “forgotten?”
You’re correct about the placement of the lesion based on what I know so far. I’ve talked to my on oncologist over the phone right when we both got these results, but she was going to go and dig into a more information including surgery and radiation like you mention.
- March 26, 2021 at 9:17 am
I’m going to also bring up interlesional therapy too, which we hadn’t talked about yet.
I did have an in-depth analysis done on my brain tumor when it was removed 3 years ago. I read it extensively when I got it, but it’s been a few years so it’s probably time to revisit it.
Thank you so much for all these great ideas! I think I’m really starting to understand how treating this is really more like managing a long-term chronic condition. Hoping I continue on with the good luck I’ve had so far!
No, in theory the cyclophosphamide (and/or other chemotherapeutic agents – usually in low dose) suppress regulatory t-cells – allowing your effector t-cells to attack the tumor. So – any benefits you have from prior therapies in regard to your fighting t-cells should be retained if not enhanced.
- March 25, 2021 at 9:08 pm
Other thoughts – Is the new tumor on your gastrohepatic ligament (at least I presume that is where you are describing) reachable for injection with an intralesional? At a location that could be resected surgically? Or, located such that it could be treated with SRS?
Sometimes in advanced stage patients with just that one new or persistently pesky tumor – addressing it in one of these ways – while continuing current therapy – offers a real benefit and even chance of success. It would be something you could certainly try (if it is accessible to surgery). If tumors continue to grow – you could still consider TIL – possibly with cells developed from surgically harvesting this very tumor – not to mention – sending this tumor – or at least what they can remove of it for further analysis for unusual mutations.
I have posted lots of information noting the benefits of using both radiation (in the brain AND the body) and intralesional therapy in combination with systemic therapies on the blog. There is also this in regard to surgical removal: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/surgical-removal-of-lesions.html
Hope that makes sense. c
gopher38ParticipantTried to post on here twice, but didn’t seem to work. Maybe third time is a charm. Not like I had Bubbles-level advice to contribute anyway. Just that it was good to see your post. I’d been wondering how you were doing. Was hoping for some better news, but the next one will be better. Some shrinking mets is always good because – as you said – they don’t shrink on their own, so the medicines and your body must be doing something right, just not quite enough to get you over the hump, but whatever the next treatment (TIL, interlesional, something else that I’m not familiar with) is is going to do it. Props to Bubbles again for what she does. Well, we’ll see if this one makes it.
- March 27, 2021 at 5:41 pm
I’ll admit, I still come to the forum to check in on everyone, but this new design is rough and it’s kept me from posting. I’m sure we’ll all get used to it….but sometimes change is hard, danggit!
- March 29, 2021 at 10:18 am
As always, I really appreciate your kind words. I remain hopeful that my silver bullet is out there and we are narrowing in on it!
I hope you are doing well!!
sing123ParticipantAmanda, I’ve been wondering how you are doing. I’m so sorry that the triple approach has been mixed. Huge that you are feeling well. Will keep my fingers crossed for you that the next treatment will be the charm. Keep hope. We all are along with you.
- March 28, 2021 at 12:26 am
- March 28, 2021 at 11:14 pm
I have not done TIL, but I have had a positive result on multiple therapies. This list starts wayyyyyy back in 2006 – present.
Chemobiotherapy SWOG 0008 trial
IMRT (Radiation one month)
High Dose Il2
Ipi/nivo + 13 nivo cycles + SBRT until I had to stop due to elevated ALT / AST.
Plus some surgeries in between.
I am currently on Braftovi / Mektovi and I have been a complete responder for almost 2 years. I know there are ongoing studies regarding Ipi / Nivo rechallenge and Nivo single agent rechallenge. TIL is also a viable option and is probably worth a consult. There’s also intralesional’s which can be injected via ultrasound if they aren’t visible. SBRT has a very good local control rate for tumors that are slow to respond. I know it sucks, but sometimes it takes a few treatments to find the right one. Keep your head up, look at all the options that you have and make a plan. Hang in there!!
Kyle, thank you SO much for this reply! As you probably understand, it always brings me hope to hear about people who have continued to find success even though they’ve needed multiple treatments. I’m SO happy to hear that you are now a complete responder, I’m certain that comes with a feeling of relief few people outside of the cancer community can even comprehend.
- March 29, 2021 at 10:00 am
ed williamsParticipantHi Amanda, Dr. Jason Luke has a really good presentation on his Twitter account from Peerview. I will give you his link, when you get there go to Feb 26 post by Jen Silverman. Just click on post and it will open to Jason Luke presentation titled “ Expanding the benefits of immune- oncology to more patients with solid tumors.” I had to answer a few question about knowledge of immunotherapy, the presentation is part of oncologist training program and is very informative about what is hot in the research field and what is coming soon like Lag-3. Best Wishes!!!Ed https://twitter.com/jasonlukemd?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor
- March 29, 2021 at 2:38 pm
- March 29, 2021 at 11:34 pm
I wanted to reply earlier but I dont like the new format and also I didnt have much to offer on top of Celeste’s advice which is to consider intralesional too (but TIL might be better). Because intralesional added to keytruda worked for me (although when I push him the oncologist who backed the intralesional approach and made it possible (my old hospital could not to it) tells me that I was lucky), and I think it can work when the burden is light and also it seems that you are getting some kind of response to immunotherapy just need an extra push.
As Ed mentions, last week there was some good news on LAG3 but the results are not published yet just a press release
(I think the link works!)
I hope Ed and others will report back if we get more details on this.
While I post less (in part because of the new format which i think means there are fewer people posting 🙁 ) I do follow the board and know you (and your daughter) from before and hope and want you to do well
take care Mark
jbronickiParticipantHi Amanda and Celeste,
- April 2, 2021 at 2:48 pm
Many hugs Amanda, you are such a good mom and such a wonderful person who has dealt with this since childhood. Sorry, I have been off the board for about 6 months as I started a new role. I just want to reiterate what Celeste said about the genomic testing which is the basis for precision oncology. I would definitely revisit those original results to see what they tested for and if this test looked beyond the normal melanoma mutations. They have seen some pretty good responses in a certain percentage of patients by matching treatment to specific mutations they don’t normally expect/ or did not use to associate with type of cancers (like Celeste said HER2 in Melanoma/Liver Cancer or BRAF in brain cancers etc) They can try experimental (or approved) treatments based on your mutational profile and these new genomic tests/panels look for a bunch of alterations (over 300) from the tissue sample and patients have seen unexpected responses because of matching targeted/IO therapy based on genomic mutational status, etc. So very important to have the genomic testing results in your arsenal against Melanoma . Atezo is one of those targeted therapies for BRAF unresectable melanoma so they may already be looking at this.
I’ve been off the board as I don’t want to appear to have any conflict of interest or promoting one place above any other, etc. or promoting clinical trials. But just wanted to say how important it is to get the tumor testing and to understand the options available based on the results. They are doing so much in this area and each year there is so much new information and trying to develop all these new treatments. And has been a game changer for some patients.
I miss you all dearly but know that this forum inspired me to my core and hope to make you all proud by supporting this type of research.
Amanda, your little girl is just so lucky to have such an amazing mom, wishing you MANY decades with her.
Love and hugs,
Good to ‘see’ you, Jackie!!! I think the folks on this board would agree with me in that, just because you work in some cutting edge melanoma research – you are NOT a tainted soul, but rather – a welcome presence!!! You’ve never once recommended a clinical trial or “far out” melanoma approach when it was not warranted for consideration. Nor have you ever pushed any particular facility or doc. Bottom line – YOU ROCK!!!! Hope you have a great weekend! les
- April 3, 2021 at 8:33 am
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