Mixed Results — looking for my next treatment option

Hey Amanda,

Will put on my thinking cap and get back with any additional info I think of.  But, immediately – here are my first  thoughts:

1.  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
2. 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
3. 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

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.

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

Sounds like you have a good onc searching and advocating on your behalf.  That is half the battle right there.  Hang tough.  Keep us posted and I know many of us are sending you our very best.  c

Tried 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.

Amanda, 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.

Best,

Cindy

Hi Amanda,

I have not done TIL, but I have had a positive result on multiple therapies. This list starts wayyyyyy back in 2006 – present.

Interferon
Chemobiotherapy SWOG 0008 trial
IMRT (Radiation one month)
High Dose Il2
Dabrafenib
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!!

Hi 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

Hi Amanda and Celeste,

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,

Happy Easter

Jackie