GF Diagnosed Stage IV Melanoma (Parotid Mass, Liver and Mesentery Lesions)

Ipi (anti-CTLA-4 also called: Ipilimumab or Yervoy) alone has about a 15% response rate.  Anti-PD-1 alone (there are 2 products:  Nivolumab, now Opdivo and Pembrolizumab now called Keytruda) has about a 40% response rate.  All 3 of these meds are considered immunotherapy.  When you combine Opdivo with Yervoy, often referred to as the ipi/nivo combo, response rates are more than 50% and often very "durable" (lasting).  There is a great deal of info in the link I gave you on all of this and you can use the search bubble on my blog to learn more.  

Side effects across immunotherapy are similar.  Here is a post I created about that some time ago:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

This review of a discussion between 2 melanoma specialists may also be useful:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

The primer link I gave you talks about immunotherapy and targeted therapy so you can look at that in light of the BRAF testing your girl's doc is doing.  

All in all your girl will be getting the best treatment currently going for melanoma with the ipi/nivo combo.  Ipi is known to be the bad boy of the combo.  While side effects to all immunotherapy drugs include the same sort of things,with ipi they can be worse and more frequent.  But, the other good new is:  Some folks tolerate the combo very well with very little problems.  AND…even if patients have to drop the ipi part of the combo due to side effects, they can usually carry on with the nivo maintenance portion very well and have excellent responses, even if they do not complete "all" the planned ipi doses.

Personally, I was on a very low dose of opdivo as I was in the first arm of a phase 1 trial.  My dose was only 1mg/kg.  My side effects were worse than some, much less than others.  I did have rashes, fatigue, wheeze, mouth ulcers, joint pain and such.  However, I kept working (some folks can, some can't) and most importantly – I'm still here!!!! 

Hope that helps.  Sounds like your girl is getting good care.  An advocate in our corner means more to us melanoma peeps than you will ever know.  Ask more questions as you need.  Yours, Celeste

It is hard to say if the coming advances in melanoma care will be as great a leap…from NO effective treatments to those with a 50+% response…as we have experienced in the past 5+ years.  However, many new drugs are in trials currently.  New anti-PD-1 products.  New inhibitors that are being combined with anti-PD-1.  New targeted therapies and things to combine with them to decrease the development of resistance and increase their durability.  As well as a fairly new category of meds, intralesional (or intratumoral) drugs that are injected directly into the tumors themselves.  These drugs are showing improved responses, esp when combined with immunotherapy.  Overall, the answer is:  Yes!  Melanoma research is learning more about melanoma and how to treat it daily!!!  Furthermore, one thing we also know about melanoma, is that it isn't all created equal.  There are many mutations and other factors that make it play differently and respond differently from one person vs another.  Having more types of treatment in the arsenal create many more options and avenues of treatment (and therefore success!!!) for the individual melanoma patient and for all of us in general.  Hang in there.  c

Talk of diet and such to prevent or cure melanoma can get pretty contentious.  You will find many "sources" who tell you to eat this, don't eat that…no sugar…blah, blah, blah.  I have all sorts of diets, sites, etc legitimately evaluated by real science on my blog it you are interested.  The only "foods" that have been PROVEN to have any effect at all on melanoma are:  coffee, red wine, curcumin (the yellow stuff found in tumeric and curry), and "good bacteria" (like those in yogurt, kimchi and keffir).  The "hot" topic regarding food…sort of….lately is related to the microbes in our gut.  This recent article addresses some of it: Precision medicine using microbiota: Intestinal microbiota influence cancer patient responses to immunotherapy, by Jobin in Science Magazine.  Here's a post on that topic, with additional links within:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/back-to-cooties-in-our-gutsagain.html

In my opinion, as someone who advanced with melanoma, but who has also remained NED for more than 7 years after Stage IV melanoma, who has taken more nutrition courses than I can count and counsels families and their children on diet and nutrition daily – here's the deal:  Be as healthy as you can.  Avoid high fat junk.  Exercise.  Eat your fruits and veggies.  Get your protein one way or another.  

I'm the weirdo who eats all the vegetables.  I have been a runner and believer in exercise all my life.  But – I still have a glass of wine, steak, and chocolate cake if I decide to.  Most folks who know me think I am a bit of a health nut.  It still did not protect me from melanoma.  So the short answer….I do not think any particular diet will save you.  BUT, I think using common sense and being as healthy as you can be makes for a better life for all of us.  c

That is good news of course, but before I had any other treatments or surgeries….I would make sure I understood EXACTLY what the diagnosis is to EVERYTHING and exactly what the plan is.  The liver can certainly have a variety of benign cyst type issues.  But, what is the plan?  What nodes…exactly!? Sentinel nodes?  A complete lymphadenectomy?  She needs to be sure she is seeing a melanoma specialist.  It is better to do things right than to do them in a rush.  A tremendous amount has changed in melanoma care just since 2011.  Not all typical oncologists and surgeons are up to date as they should be.  If your girl's docs are….great!  I would ask them what they know about immunotherapy.  How many patients with melanoma have they treated?  Have they administered ipi?  Ipi/nivo?  BRAF therapies?  If you get blank looks or cavalier remarks…then seek help elsewhere.  If you get thoughtful, knowledgeable responses….good and those docs should HAVE and SHARE a complete diagnosis and plan of care, with a rationale for their actions, with you.  There is no harm seeking a second opinion if you feel you need one.  I don't know if it would be an option, but Chicago certainly has excellent docs and centers…and there is MDAnderson in Texas.  There may be additional options nearer to you as well.  Hang in there.  Being your own advocate…or having peeps who play that role for you…is essential in most things and certainly is in melanoma care.  Celeste

Still thinking about you and yours…St. Louis and Kansas City should also have some good treatment/physician options for you.  Huntsman in Salt Lake is another.  Just depends on where you are exactly.  Another…a bit out there thought….sometimes BRAF inhibitors (and your docs should be able to have BRAF testing done on the biopsy) started super quick can decrease tumor burden very rapidly if you are BRAF positive and could possibly decrease the size of the tumor in the parotid, thereby decreasing the invasiveness of the surgery if there is a great deal of tumor bulk there.  (Though I can't tell if that is really an issue from what you have said.)  Of course, if a strategy like that were to be adopted, the next part of the treatment would be then rapidly switching to immunotherapy (like ipi/nivo) before tumor work-around occurred.   But…this is a pretty agressive strategy…and a simpler one is not necessarily bad and might be more feasible.  Just thinking.  Also….you might need to start a new thread so as to get more input.  Sadly, melanoma is all too prevalent and you are already on page 4-5 of this forum….making it harder for folks to keep up. yours, celeste

Just FYI, this is a fairly complex surgery with the chance for facial nerve damage and scarring to the face and neck.  Make sure you are comfortable with your team.  After discussing the surgery with doctors at 3 hospitals I ended up at MD Anderson.   I had my parotid and temporal bone removed with a complete lymph node dissection and am pleased with the final outcome.  Much better than i expected.