Even though my intimate involvement with cancer is less than three years, it really does seem what is happening now is proving to be a true shift in developing new therapies to cure cancers.

Like so many technologies, advancements become greater and more often. It seem very bright that in the next several years to a decade, there will be significant cancer curing therapies.

I'm so trilled to be so close to the head of these new advancements.

Thanks Brian and OCF!

Thanks for the updates in this fast moving field, and it seems we, at least myself, need to major in biology soon.

I've also been somewhat following INO-3112, (Inovio) Immunotherapy that generates Killer T-Cell response to destroy tumors with HPV (NCT02163057), which are in phase I and phase ll clinical trials for head and neck cancer, but don't see much mention of it.

https://clinicaltrials.gov/ct2/show/study/NCT02163057

In addition, CAR T-Cells also being injected directly into solid tumors such as head and neck cancer, which was posted in OCF News Feed.

http://www.pharmafile.com/news/5017...-cell-therapy-trial-head-and-neck-cancer

https://clinicaltrials.gov/ct2/show/NCT01818323

I am having trouble getting approved for Opdivo. It is in the appeal process. I have what I thought are all the qualifications. Head and Neck Cancer with original treatment on Cisplatin. Currently have lung mets. I was on Erbitux but it quit working. I really have no other viable options that have proof of working. I have very limited time. My tumors doubling rate is pretty quick, last 2 months it grew 3.5cm, which means that tumor will be 7cm two months from now. I have another tumor on the opposite side of lungs also. My whole feeling like I could beat this is going away quickly. After losing the other two guys on here that were ahead of me in treatment and diagnosis of lung mets, makes me chronologically the next one to go. Now it seems paperwork will be the death of me. I just don't understand how when there is a drug that has proven to put lung mets in remission, that it is so difficult to get approved. With only a 15% success rate, I need to get this drug and find out if it works on me quickly so I may have time to find a trial or start going down the panic of out of country physicians and/or the long list of unproven and sometimes odd treatments. Feel free to IM me to get my number if you have more info on any of this or message me or reply to post.

Dear Jeff,

After the phase 1 PDL1 trial (Opdivo), John was in a phase 2 Selinexor trial. It is a kind of targeted therapy. However, he was having major problems with pneumonia and postural hypotension that the doctors decided to take him off it. He was then placed on capcitabine, which has been around for years. He had to stop using that because he was hospitalized for 16 days with pneumonia brought on by silent aspiration. (It is for this reason that I feel very strongly that one should never underestimate swallowing problems.). I think in the interim the nodules grew and he had to be referred to palliative care.

Before he was in the Selinexor trial, he had six doses of Taxol and Carboplatin, which statistically, have a higher success rate than PDL1. The RO also managed to give him two rounds of radiation (20 grays each time) directed at the swollen nodes in his airway while he was having all that chemo.

Can you talk to your medical team about these other drugs? They may at least keep you in a stable condition.

That aside, I am sorry that you are having problems getting approved for Opdivo. I know how hard it is to keep on getting bad news and how scary it is. I do hope that your medical team, like John's, will take a positive approach and let you try whatever they have in their arsenal. I have you in my thoughts.

Jeff,
Have you called Bristol Meyers Squibb? I saw on another board one or two people got approved by BMS through some sort of compassionate care I think??
Not sure if BMS is who you are referring to when you say you were denied.
Have you looked at any trials with MEDI-4736? Or maybe try calling maker of Keytruda and see if they can help you. I feel your frustration and wish I knew how to help.
Nancy

Jeff, I sent you a private message please check it out. Brian

Jeff hasn't contacted me. Is anyone here emailing directly with him or in closer contact with him than this board? It is important that I get ahold of him ASAP

Brian, Ive sent Jeff an email to the address he has on file asking him to check his PM and contact you right away. Hopefully its the correct email address and he checks it frequently.


*** Update later 4/14 evening *** I was able to reach Jeff thru email and he did respond. He is aware of Brian's attempt to pass along info.

I first want to apologize for my overly emotional response. i am usually not like that at all and I like to keep myself on the straight forward talk.

After a long back and forth, my oncologist was able to get the approval for Opdivo. I should be starting soon, however I have this persistent infection in my jaw/neck that they would like to get rid of before starting. This may include taking out the titanium plate and screws from my mandiblectomy. I currently have had one screw work itself out and now have a few holes in my skin that show the titanium pieces through the holes.

I also want to thank everyone for their help and compassion. Gloria, it is comforting to hear from you as I have followed your husbands journey closely. You are beyond caring and supportive for still being around to help. Christine thank you so much for the email to let me know about the message from Brian, and Brian thank you so much for the message and offering your help. Nancy I also want to thank you for the support. I have not contacted BMS as I had never thought of it, but I will keep that in mind for the future. I should probably go back in the earlier posts of yours to read about your husbands journey of lung mets.

I don't know all the etiquette in what personal info I can give out as far as other ways to connect other than this board but if anyone would want more ways to connect, my main ways to talk to people and connect are through facebook, emails, and texts.

Jeff, no apologies necessary!!! We all are in this together and support each other. We all understand your situation and want to help as much as we can.

Here at OCF, we protect our members privacy. But its still best not to give out your personal contact info online. If you want to communicate with anyone besides thru this message board, they can send you their contact info thru a private message (PM).

Best wishes with everything!!!!