Hello,

Its been a while since I've posted. I've been present on the board by keeping up with everyone's posts, but haven't had the strength to post myself - being a caretaker is emotionally and physically draining.

As a recap, my dad was diagnosed with stage III SCC on his gums. He had surgery in May, went through 33x rads as they found one encapsulated node. At his follow up scan, they found what they referred to as a second primary in his right BOT. He also had a positive node in his neck. He had surgery again in November for a partial glossectomy with neck dissection and pec flap. Upon exploration of the neck, they discovered disease around the carotid artery, but luckily they were able to tease it off and litigate a branch of the artery.

Fast forward 6 weeks and my dad comes down with an infection for which he was put on IV antibiotics. He starts to develop little pimples around his neck dissection incision and trache site. A biopsy reveals dermal metastasis of the SCC.

Since January my dad has gone through a few different chemotherapy options. The first didn't work at all and made him feel lousy. The second was well tolerated and provided stable scans for 4 months, but our latest scan showed that we had "interval growth." Our MO recommended a PD-1 immunotherapy clinical trial called MK3475. We do have the option to try a standard chemotherapy treatment, but the success rate for the trial seems to be better.

I apologize for the novel, but was hoping someone out there might have heard about this trial or currently be in it. What should I ask? What are the side effects? What should we talk about before starting? It seems so overwhelming! A challenging part through this has been the rarity of dermal metastasis - if you know anyone you could connect me with that has been through this, I would appreciate it.

We're still holding out hope that there is a promising treatment for my dad!!

Im so very sorry to read about your fathers continuing problems. I cant imagine how difficult this whole thing has been on you, his caregiver. Always remember we are here for you too.

Here is a fairly recent thread where 2 members discussed the clinical trials....

Clinical Trial recent thread

Im sorry there isnt more info. Members dont often discuss their participation in clinical trials. I do know there have been quite a few over the years who have taken part in a clinical trial. Try doing a search with different key words that pertain to the trial you are asking about. There are even a few clinical trials listed in our General Board section. On the main forum page, click on the words General Board and you should see the threads.

Best wishes to you and your father. Please keep us posted on how he makes out.

Concerneddaughter, my husband had the PDL-1 trial. What you need to ask the doctors is what phase is the drug trial in. If they already have patients participating in the trial, then how have these people been doing, what kind of cancers do they have, and generally speaking, what kind of side effect(s) do they suffer from most. You will have to sign an informed consent document in which all the possible side effects, the aims of the trial and all the tests that are required during the trial (e.g. Biopsies, ECG, Blood work, urine sample,etc.)

Clinical trials are not always available so if you have this opportunity, maybe your Dad would like to consider participating. If it fails to work for him, he will have the conventional chemo to return to at a later point.

As it is a trial, there will be lots of 'unknowns' even for the doctors. There have also been limited stats collected. So, your dad will need to be comfortable with getting answers like, "I can't say," from his doctors. However, he will be monitored closely. At our hospital, we were given the MO's pager number, the trial nurse's number, the on-call medical oncologist's number to call if anything happened while we were at home. I felt quite supported. However, a trial is a trial, it may work for your dad or it may not. It is just another thing to try.

If you have other questions, I would be happy to try and answer them.

I've taken a hiatus from the OCF, but wanted to share a sad update. My father passed away in September after a short, but courageous battle with this terrible disease. We were gearing up for a promising immunotherapy trial when suddenly my father became quite ill and suffered from aspiration pneumonia. He began to have issues with his breathing, got better, and worse again. It was a rollercoaster of emotions. We were getting ready for him to come home and get well again before starting his trial, but he passed away peacefully in September. Unfortunately, my dad had a very rare dermal metastasis, for which there are many unknowns. We did everything we could, how he wanted and everything right, but it was his time to get his angel wings. May he rest in peace.

ConcernedDaughter,

I'm very sorry to hear of your fathers passing, He fought fought a courageous battle, and couldn't ask more from him or yourself. My sincere condolences to you and your family.

Dear Concerned Daughter, I'm so sorry your father passed. I lost my husband this January under almost identical circumstances as your Dad -- pneumonia, then hospitalization, then pneumonia again which finally took his life. I understand it must have been very tough for you. My condolences to you and your family.

Im very sorry to hear of your fathers passing. May he rest in peace.