Need help!!

I'm sure others will add details based on their experiences, and while I can't help with any insight as to what to try next for treatment, you might find these links useful on how to go about getting a 2nd opinion appointment at:

Memorial Sloan Kettering:

https://www.mskcc.org/blog/how-do-get-second-opinion    – look for the link in the middle of the page "making an appointment / learn more" which will take you to the details on how to book an appointment online or the phone number to talk to someone and book the appointment.

MD Anderson: 

Link to their Melanoma specific page: https://www.mdanderson.org/cancer-types/melanoma.html

Link to request an appointment:  https://www.mdanderson.org/about-md-anderson/contact-us/askmdanderson/appointments.html

Hang in there – we're all in this together!

Rocco

LIsa, I cannot give you the quality of advice others can like Celeste and Ed williams and many others. But i think you need a good second opinion, exactly as you are thinking, because the chemo recommendation seems a little odd. I would want to know has the keytruda really not worked, if that is the case then are there clinical trials you can try or go the TIL route (see celeste's listings in response to josh which lists oits if trials) The second opinoin melanoma specialist should be able to answer these questions. I dont know your location, but you can check this board for opinoins on the various specialists. Good luck, mark

Hi Lisa,

would definitely get to one of the top research centres and get that second opinion.

i will say that chemo is sometimes given to slow things down prior to next steps (my husband did it for a few months to buy time before doing TIL).  He had failed the various immunotherapies at that stage.  But it doesn't sound like you have tried the combo ipi/nivo yet and just because a single immuno hasn't worked that does not mean the combo won't.

But it probably all depends on your state of health, liver enzymes, etc.  The Dr should have taken that all into account with the plan.

anyhow, hope you get to another Dr quickly for your second opinion.  Good luck

Maria

I am sorry for all you are and have dealt with Lisa.  I just put this study up on my blog.  It addresses response rates to ipi alone or the ipi/nivo combo in folks who have failed anti-PD1 as a single agent. Those folks were still able to gain a response, though at about 20% rather than the usual 50% for the combo.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/response-to-ipi-or-ipinivo-after.html

I realize this is not exactly your circumstance as you failed both keytruda and ipi…but it is something to think about.  

Though you don't give specifics….if there are tumors that could be radiated while you are on immunotherapy…that might be helpful as well.  There are many studies addressing the benefits that can be attained when radiation and immunotherapy are COMBINED.

This link will take you to a great number of articles and posts that speak to that: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy&max-results=20&by-date=true

You can also consider trials of new combo's.  If you put "josh" in the search bubble of my blog or look at the February 1, 2017 post – you will see studies that were open at the time I posted them as well as treatments melanoma researchers are looking at.

As far as seeking a second opinion…I am partial to Jeff Weber at NYU.  He is a straight shooter and always answers folks.  Additionally, he is one of the few melanoma Big Dogs who will actually recommend a trial that is NOT being done at his institution if he really thinks it is what is best for the patient at hand. Sloan Kettering and Sznol would certainly be a good option as well.

I don't know that I have helped you much, but I wish you my best.  celeste

My two cents–if you're traveling to NY, see Wolchok at Sloan (in addition to Weber).  I progressed on the treatments you mentioned and, so far, have been fortunate to be in the 21% with ipi-nivo as my most recent treatment (for 12+ months).  MDA is also worth a trip.  Sloan and MDA tend to have more trials than other institutions.