Good luck Jeff. Here for you.

Jeff, I have been following your situation. I'm glad you are pursuing other options and I wish you the best of luck. When I had a recurrence in 2010, I went to 3 different doctors and got 4 different options. You've gotten great advice already and there isn't anything I can really add. Just be your own advocate and don't give up hope!

Dear Jeff,

I am following your thread, all the while keeping you and your family in my thoughts.

May all of the cancer soldiers line up and fight for your life.

Wishing you all the best,
Kerri

Jeff,

Following and hoping for the best!

thank you everyone. Tomorrow I start my first round of Erbitux. Brian, I contacted city of hope and am still in the process of getting an appointment with an oncologist. I spoke to one of their specialists and they agreed that Erbitux is the gold standard and starting with that is what they would do also. I am under the impression that if Erbitux does not work then I would have the go ahead to start opdivo and/or keytruda. I am really hoping for some good news soon. I would like to be one of few that actually beat mets to the lungs. If not, I would really like to get around 5-10 healthy years before I go down.

On a personal note, I am in escrow to buy my family a home that would be perfect for my wife to raise the kids in and now the lender is asking for 20,000 more to close escrow with. Some friends of mine have started a gofundme account and its just nice to see how many people are supporting me out there. We are no where near close to what we need but it is nice to have support.

If anyone has any experience with Erbitux and could help me out with some guidelines as far as symptoms etc. that would be great. Thank you all.

Jeff,

I had Erbitux in 2013, along with Taxotere, for six weeks. The first week is usually a loading dose, 400mg, which they monitor you closely due to two rare severe side effects, one beng allergic reaction, and heart failure, which may occur the first two infusions, and so they may reduce, slow down or stop the infusion if needed. They gave me bendryl infisuons to reduce risk of side effects, Tylenol probably to reduce fever, which had a slight one later that night, and the Benadryl out me to sleep each time, and the rest of the weeks about 250mg Erbitux, along with the benydryl, that took about an hour.

The common side effect for Erbitux, and other monoclonal antibodies, is the rash, so at the first sign of any tell the staff, and I was given minocycline, which basically cleared the minor facial rash, but not the arms, legs, head itchiness, which drove me crazy. They recommend using Dove liquid soft soap for sensitive skin, head and shoulders for dry scalp, and a variety of creams aquaphor, cetaphil, aveeno fir my skin, including putting them while wearing socks, gloves from the hand and foot syndrome, in addition too, band aids on my fingertips. I didn't want to use crazy glue, but that was recommended for the fingertip cuts.

The facial rash was said to be indictive of the drug working. But I have read it's not, and is a side effect of the monoclonal antibodies, and not that the drug is working or not. Not sure if it stil holds true, but Erbitux was said not to work in about 5% head and neck cancer patients, and there is no assay test for this unlike there is for colorectal cancer, which doesnt work in 40%, and an assay tests for the mutation of KRAS gene mutation is done before starting. There is a new drug, not sure if's current use, that increasesv the effectiveness of monoclonal antibodies.

Erbitux can effect red blood cells, and I needed a blood transfusion about Midway through, cause dehydration, mucocitus, conjunctivitis, constipation, at least in my case, needed extra IV infusions, which was a lot better than my previous chemo's, but is not without side effects. Not sure how long you're doing Erbitux, but do know some on long term chemo maintenance with such.

Here are some links about Erbitux, and you can also use the search button here for previous posts, and good luck tomorrow.

http://www.accessdata.fda.gov/drugsatfda_docs//label/2004/125084lbl.pdf

http://chemocare.com/chemotherapy/drug-info/erbitux.aspx

Thank you, so far its been 4-5 days and no side effects to speak of yet. They plan to infuse me every Thursday for the next few weeks. I am hoping to get switched over to the immunotherapy stuff like opivido and such pretty soon and see how those do. I just do not want to waste too much time on stuff that isn't as cure orientated as others. With my current health being pretty good I do not really want to sink into bad health before they really start to try and "fix" me.
I know there is a pretty much 100% chance of not surviving mets to the lungs. I would love to break that mold, but more realistically, I just want to get close to 10 healthy years. Call me crazy. ha

3Thought I would give and update of the treatment so far. After a month or so of weekly Erbitux, I had a CT scan of my chest on Monday. The scan actually showed the larger tumor had not grown and may have shrunk slightly. The smaller tumor reduced significantly in size. I was not expecting any results from Erbitux. My side effects are the typical rash, which is all over my body and itches extremely bad. My fingertips are also shot. They are cracked and sensitive to where I cannot really use them. Other than those and being rather drowsy it seems to not be even close to as bad of a time I had with Cisplatin. I am still really wanting to get started on the immunotherapy drugs such as Opivido. I figure as long as Erbitux is working my doctor will probably keep me on it. Overall I am cautiously happy as I know there is no cure, but this may give me more time which is what anyone in my position is searching for. I still welcome any advice or any questions as well. I never know if I am doing things right or what. I just usually take my team of doctors' advice and mix in my research and gut feelings. Also, I am fighting another infection in my neck/jaw area that has come and gone since my surgery last year. I am trying to keep out of the hospital and off antibiotics if i can.

Have you been able to do more research into clinical trials? There are many and just one could be the ticket for some improvement. All trials are registered so you'll know what is available.

Thanks for your update, Jeff. I dont always reply to your posts but I do always read them and watch for your updates. Its a positive sign seeing your tumors have reacted to the chemo and shrunk.

Hoping to see more positive updates. Please keep us posted.