so i met with my oncologist today. He wants to start me on once a week Erbitux next week while we wait and try to find any trials. he will only give me worst case scenario or 3-6 month survival and get your affairs in order speech. I am glad he is honest but I would like to hear some not to worst case also. has anyone had any luck with Erbitux? he said he would add another drug to it if it looked like it would respond. otherwise he also said he has access to opdivo and keytruda and if nothing else works he could try those. I was thinking I would have maybe a year or two. I guess it seems maybe I am hoping for too much?

I can't comment on the medical side of things but a plan for treatment sounds good to me, especially with cutting edge drugs. I hoping the best for you.

I think that you need a second opinion. I do not wish to undermine your comfort with your doctor, but given what he is suggesting I am less confident that he is up to speed with the most current ideas. There is little doubt the pdl-1 immune checkpoint inhibitors are having high success in difficult cases like your He has mentioned two of them that are available and on the market. EGFR inhibitors like Erbitux have been around for awhile, and have had some success when used in combination with the current treatments that you have already had, but not as a mono therapy. There are some really great institutions in CA, and getting a second opinion on your options should be easy and quickly available before this goes any further than it has. If you wish to reach to speak with me I would be happy to talk with you. You can call the OCF office 949-723-4400 on Monday morning to get my cell phone number.

Brian,
I have a referral in to City of Hope to get a second opinion. I am hoping that comes through quickly. I am all for fighting this head on and using all avenues I have available to me. I am not past even going to Cuba to see what kind of treatment I could get there as i have heard they have some cures for lung cancer which doesn't fully apply to me but could help. I will give your office a call soon. It would be a blessing to talk to you and get some advice. I am wondering if anyone has had any success with surgical resection of some or all the pulmonary tumors?? Today was the first day i actually had chest pain and shortness of breath. It could have just been stress but I am either too optimistic or just ill informed because I can't see myself going downhill anytime soon as I feel the best I have ever since my surgery this time last year.

Hi Jeff,
I know that every case is different, but my husband did have luck with having his lung metastasis being resected. He was diagnosed with base of tongue cancer in 1998. Then a lung met showed up the next year (1999) in his left lung. He had that resected. Following year (2000) another met in right lung. They resected that. Did chemo after and was NED until 2014. He's now battling again with new primary BOT and lymph mets, but I feel we were very lucky that the treatment was so aggressive back then. I don't really know how/why they made decision to resect ( maybe it was just one small nodule?) but it gave him 14 more years. That's why I'm glad you're getting opinion from CCC. If you're up for a third opinion i can tell you that MDAnderson was wonderful. Good luck and keep fighting!
Nancy

Hello Jeff! I have been around awhile (both with and without the cancer diagnosis :)) and don't intend to leave anytime soon. Sorry that I didn't send a note sooner but I have been camping. As you will see from my signature, I developed lung mets in 2008, and have had no evidence of disease since November 2013 when a PET scan gave me that delightful gift. You will also note in my signature that I have had two clinical trials for my lung mets and several non-surgical treatments. My quality of life now is quite fine. Your treatment may be quite different from mine, so I don't presume to address quality of life issues during treatment. Good for you on seeking a second opinion. Send a PM if you have questions or concerns I might answer.

Just came across this cool quote from John Muir: The world is big and I want to have a good look at it before it gets dark. All the best to you.

14 year is amazing I am so glad to hear of such good news. I know everyone is different but it makes me happy just to know you guys had that time together you may not have expected. I will be asking about resections. It could be the location and size prevents it but I want to make sure its considered. Thank you for posting. any little bit helps

Thank you for your encouragement. I will hope and pray for having good success with trial drugs and/or any others they may try me on. I would not know what to do with myself if I could actually get back to NED. I am going in on Monday to have my ENT surgeon use ultrasound guided FNA to look around in my neck and cheek for anything that he could drain out or determine if there is recurrences there. I have had bad problems with infections in the jaw and neck and there is a lot of pain and swelling in that area now. I will ask him about the lung resections as well, although I know that would fall under a pulmonary Dr., but maybe he has some insight since he has studied my scans.

Jeff - didn't hear from you so I suspect you are on a path to more information at City of Hope. The PDL-1 immune checkpoint inhibitors that you referenced earlier are the hot topic of immunotherapy at every meeting I go to. While they do not work 100% of the time, the group that they did work in have had durable, robust remissions of their disease. I watched these go through their initial trials in my position at the NCI on the H&N Immunotherapy Oversight Committee. The people in the clinical trials were all in pretty tough shape. They had failed initial treatment or were in recurrence after being treated with both radiation and chemo, (which most had Cisplatin and many had in addition to the EGFR inhibitor Erbitux). This would be a typical population for a drug that was in early stage trials where dosing and other things were not fully understood. So when you see a large group of individuals, who are in such deep water, respond so well to something which is really just letting your immune system see a tumor that was not visible to it before, you know this is an important advancement. Why your current doctors (who surly have heard of these PDL-1 drugs, because of their breakthrough path that they exploit) have not moved you further down the field at this point in time I find baffling, other than some institutions and some doctors are resistant to using new modalities until they have lots of years of data behind them. From a patients standpoint if they have gotten proper releases from you as to the possible side effects and you are good with them, and these have now had the blessing of the FDA, there should be no reason for them not to proceed. Remember they do not work in everyone, but at this stage of things choices are not plentiful for you, and doing nothing surely is not an option.

Speaking of the old school conventional options; resection surgery, likely done laparoscopically so it is minimally invasive, and RFA (radio frequency ablation) also minimally invasive, but not so much fun to have done, they have their champions. And as some on this board have found they can be succesful. The trick here, whether you are cutting something out, or cooking it to death with a needle connected to radio waves, is to get all the surrounding cells that are part and parcel of tumors, as some dysplasia and malignant cells might not be within the main tumor mass itself. Hence the too often need for a second go around with these modalities when those small things prosper into something of more substance.

Whatever path you choose, I urge you to not delay, to be your own advocate and push for action in some direction. Remember that while lung involvement can be critical on its own, the highly vascularized nature of the lungs makes them a ideal place for mets to spread to other vital parts of the body. In all this time in not your friend.

I want you to know that you know that whatever contacts I have, whatever information I can give you to help you make a decision, whomever I can call on your behalf, I will. I do not have a world of influence, but the little that I have as a non doctor advocate, I will certainly apply on your behalf if you wish it. We are all wishing you the best possible outcome from this.

currently I am just waiting for this referral process to play out and get an appointment with City of Hope. It should be coming quick and in the meantime on Monday my ENT is going to sonically search my neck and jaw and hope to not find cancer but only some fluid and infection to pull out. I will take your advice and let my doctors as well as the City of Hope know that I want to start right away on the immune inhibitors and not mess around with Erbitux and any other old school treatments at this time. I am very honored to have the support of this foundation and I will call on your help if needed. Thank you again and I hope to have some good news soon. If you have any other options or ways I should do things please let me know. If i can post or message my number to brian or anyone else that has help for me let me know.