I do not post much on here but I have used the knowledge I have gained by reading here greatly. It is without much happiness to say that I am now in the spread to lungs crowd. Its been a year since my first diagnoses, about 7 months past treatment. The treatment has left me with extreme trismus and dry mouth along with limited neck movement and many other things that don't matter much anymore. I do not know yet as to my prognosis except that basically no one has survived this spread to the lungs. I do not know if I will post much but i will read from time to time. I just want to thank everyone for what they have shared and don't worry too much about me. If you pray, then pray for my young (9 and 11) daughters. They are strong but they will need the prayers and all they can get after I am gone. Bless you all and thank you all again.

Jeff, Im very sorry to read your post. Im hopeful that there will be some sort of treatment available to help you. Wishing you and your family all the best.

Jeff - I am sorry to hear about your situation. There is a brand new drug from Bristol Myers Squibb called Opdivo (nivolumab). I would ask your doctors about this. I watched this go through clinical trials and it was later fast tracked by the FDA for lung cancers in patients that had had previous platinum based chemo. It was targeted for non small cell lung cancers. You don't comment about your specific diagnosis, but even if yours was lightly different, this is a drug that works with your own immune system and it might open up a pathway in other lung cancers for an immune response. It had some pretty good results though it didn't work for everyone. If your cancer is a variant of this, you may still get someone to try it off label. That might be a hail Mary idea, but I've always said I'm not going to go quietly into the night. It think it is at least worth talking to your doctors about sooner rather than later.

Here's a link to the package insert
http://packageinserts.bms.com/pi/pi_opdivo.pdf

I hope he checks it soon. Some guy.. you're young and while lung mets is a grave dx, there are people here right now going through trials and fighting it. look at trials and see what is available to you. Particularly what Brian suggested. Don't give up just yet you have two children to fight for.

Hugs.

Hang in there and give all you have to this fight!! Semper-Fi Bob

thank you everyone. I really don't want to just lay down and take it but I know there is no success in the normal standards. I will look into my trial options and anything else. I will fight. I will enjoy my last few months years or whatever I've got. I hope I get a long time. I am not sure if there is a proven way to at least extend life while not making yourself sick and not able to enjoy it.

Im glad you are open to suggestions.

When having children that depend on you it makes a difficult decision even harder. I cant say I have been in your exact situation but I was facing a choice of fighting or packing it in when I was diagnosed with OC for a third time in 3 years. I almost quit and let nature take its course. I also have had spots on my lungs for the past 7 years. Luckily the 'spots' have not changed at all so my doc isnt concerned. The members of the forum helped me to understand even against the odds, I couldnt just quit until I gave every option a try. I hope you will continue to fight even if you have limited options.

Please keep posting. We all care and worry when one of our own is sick. No matter what path you choose, we are here to lean on. Feel free to vent if you feel the need. We're in your corner.

Best wishes

Look at ZendaT, GmKraft, Stilty. I think they are all involved in lung mets. Zenda has been around a while. There are a few more as well. Ideally you get into a trial and are able to extend your life for as long as possible and potentially something or someone will come along with something that is successful.

There was a guy in Nova scotia here with a liver tumor that was wrapped around his liver in such a way that it was inoperable.
He went through all conventional treatments and in the end they told him go home to die. (they gave him 6 mos)

He looked into a different treatment offered at a hospital in calgary (clinical trial?) did the full regime. I didn't shrink the tumor just stabilized it.

He finished they said we've done all we can do. go home.

He went back home. His wife put him on an alkaline diet. and he lived his life hoping that something else would come along before he got worse. Jump ahead 10 years. (he had small kids too) they'd moved to Toronto and he told his new family dr. about his situation - they sent him to princess margaret thinking maybe he should be assessed again. they too said... there's nothing more we can do. It's inoperable.

Well then his dr. referred him to a transplant specialist who was doing amazing work at toronto general.

the dr. decided to try and operate.

removed the man's liver and lowered it's temperature to the point where there was no cell damage. Then he operated on the liver alone (like they would when they do a transpant) and was able to remove all of the tumor.

Now he is cancer free.

it's all about holding on.

As a side note. They don't know why his tumor stabilized... the clinical trial he had was short - 6 months. he changed his habits and lived on his diet for 10 years with no tumor growth.

regardless. He is looking forward to seeing his kids graduate and get married.

never give up.

hugs.

Thank you everyone again. I don't want to fill myself up with false hope but it does give me some encouragement and some more will to look for trials. I would love to get a few more years added on without too much quality of life issues in order to be around for another breakthrough. Ill update my sig to show current status.

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.

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.

someguyjeff,

I am not great at offering advice, but if I can I will say that you need to keep believing. Erbitux will help until you can get on a trial and things are changing every day. I am hoping to start a new trial tomorrow that didn't even exist when I was first diagnosed with Mets. I won't lie, the odds are not high, but anything is possible as you have seen here.

As for Erbitux - lotion, lotion, lotion! Bathe in it because that dry skin is a small but annoying side effect. Keep working on getting on trials if you can and if you want to - they offer people like us hope! I totally understand what you are gong through, I really do, and I would hate to see you resign yourself to defeat while there is still a chance, especially while you can maintain a good QoL.

Just one man's opinion,

The Hellion

Thank you so much. My MO is going to keep me on Erbitux for another 6 weeks as it look like for now it is doing its job. The rashes are getting pretty bad and my fingers and toes are getting infected under the nails and causing havoc. These are livable effects however and I will deal with them rather than the alternative of doing nothing.

My doctor wants to put me on Opivido when the Erbitux stops working. He offered to add another drug to the Erbitux but said that the side effects would be harder to live with and he couldn't promise it would do any better than Erbitux alone. So far I am not really having any symptoms from the actual tumors. My issues all stem from the Erbitux and from the prior radiation and surgery. I would love to find out about different trials that may be available, however I am hopeful that the Opivido will work well and provide me with some regression.

Seeing the post today about John losing his battle with lung mets is hard to take. I know he fought long and hard and survived longer than many.

The Hellion, you have also been fighting lung mets for a long time and now have further spread, and its inspirational to see people like you stand up and fight. It gives me hope that I can outlast the critics and norms. Like you, I am hopeful that one of these next treatments will be the one that works for good. I know the reality and I am grateful for each day as each day is one that was not promised.

I just hope to be able to get more time as my kids are young. There are many things left I want to do with them and that gives me the strength to keep pushing through the pain and take the next step.

Keep thinking that. Things are getting better every day and someday they will figure out how to beat this thing. It is great you are still responding well to Erbitux - stay strong, there are worse side effects than those!

Keep doing what you need to do and keep dogging your MO to continuously look for outs and options - if something doesn't work, there are still other options, and you are young and strong - you can take a lot yet before you are beaten!

Lotion, lotion, lotion my friend .

Stay strong!

Dear someguyjefff and Hellion,

Please, please do not feel discouraged because John passed. His problems since the end of June were silent aspiration and postural hypotension. Because of the former, he got aspiration pneumonia repeatedly. It was ongoing since July and he had antibiotic after antibiotic to fight it. Then he got a really serious bout which put him in hospital for sixteen days. The clinical trial with selinexor had to be halted because he was feeling so poorly. Then the hospital stay meant that he could not be given capcitabine -- the chemo that he was given after they stopped the selinexor. I believe that gave the tumors a chance to gain the upper hand.

We are fighting a war. John was but one warrior that fell, but there would be others who would move into the fight to keep the war going. Everyone who takes part in a clinical trial, irrespective of the outcome, is adding information and stats to the doctors and researchers' knowledge of the disease. We don't know what is around the corner.

What you can do is to keep in good physical condition. Eat and keep hydrated. If your body is stronger, even when you are suffering from side effects, you will be better equipped to deal with the debilitating effects.

I wish you both well and calmer seas ahead. I have lost my husband but I refuse to say cancer has won. Not yet.

Quite the contrary, Gloria - John is still an inspiration - complications arise and I am sorry they touched you, but I have not given up at all. Though I am so sorry for your loss, I know you will always encourage us to keep fighting. I won't say I don't feel sorry for myself sometimes, but I know things are changing - I'm on the front line. Think of me as the next in the line - the next soldier in the fight.

someguyjeff, I know you will come to terms with your side effects - you have all of the right motivation. I also know what it is to be tired or scared or just plain depressed about it sometimes. I feel that way, too, but I can only encourage you to tighten your belt and keep fighting (which it sounds like you are doing )

The Hellion

Hellion, I am glad to hear that.

I am inspired by the fight John took to cancer as well as you hellion. I can only hope to be able to give as much good information to the doctors and people working for a cure as you both have. I will fight. I have nothing else left to do but fight. I will be depressed and mad and every other emotion that comes with it, but I will always try to find that little thing each day that i can do in order to feel good enough to get to the next.

Good for you, someguyjefff!

Wanted to leave an update. My latest scan shows that the tumors in the lungs are growing again. One of them looks like it is growing pretty fast. I have been on Erbitux weekly since November. I am not sure if that is a normal amount of time that it keeps the tumors at bay or not. My oncologist is going to have me switch to immunotherapy now. I should be starting Opdivo either next week or the week after. As this is one of the only ones that is FDA approved for this type of cancer at the moment, I hoping it works on me and that it works well for a good amount of time. If not then I hope I can get on a trial and keep this from killing me too quickly. I know the most probable outcome as so far there doesn't seem to be anyone who has put this in remission once it gets to this point, but there is a very slight chance that with the new drugs coming out in the near future I can squeak through. I feel like I am in Vegas putting all my life savings on red and spinning the wheel.

Dear someguyjeff, So sorry that you are having to go through this. Was hoping and praying for no growth. Will hope and pray that the wheel spin wins the lottery. Like someone else said recently . . we are right there with you. Big hugs, Sheryl

I have been following your posts. I will be thinking of you, pulling for and praying for you. I am hoping the Opdivo proves to be successful. It must be hard to go through all of this, but know that so many people are thinking of you and wishing the best. Denise

Thought I would give a quick update on where I am at with things. I am currently as of last week on hospice. The last 3 months have been down hill with the coughing and pain increasing. I was able to get three Opdivo infusions in before switching to hospice. I have checked off the boxes in my bucket list such as getting my youngest daughter to Floriday for her cheer finals. and then recently my oldest daughter to Vegas for her barrel races finals. They both did amazing.

Somewhere during the end of Florida at the end of April, I started coming down hard with upper res. problems. I was coughing so much and had a lot of pain in my lungs. at the end I was also coughing up blood. My doctors couldn't define any pneumonia but had my antibiotics and started my Opdivo. The coughing came and went and the Opdivo gave me mostly just fatigue the first week after. By the second infusion of Opdivo I was starting to get a lot of pain in my chest and they said it could be the Opdivo breaking up the tumors. The week preceding the third infusion I quickly went down hill. I ended up in the ER. I couldn't balance myself, walk, speak clearly, and my memory was shot. The last few days I was basically in a coma at home. I didn't remember anything and I couldn't speak clearly. It was like I just came out of a dream long to speak about the dream and went back to sleep. I hadn't eaten or drank in three days, and I couldn't hold my urine long enough to make the bathroom.

They determined I was too sick to receive any more Opdivo. I decided to sign up for hospice to get my strength to hopefully get another infusion someday. I can say one thing. I do feel better. I am gaining weight and my cough is virtually gone. I was on deaths bed. within hours. in a hospital. I am glad to feel better and have a possible chance at getting some more Opdivo down the road. If not, i am glad that I didn't die in the hospital way from my little girls.

If any of you have any suggestions or know any other way to go about this, I am open to suggestion.

Jeff, I'm so pleased you recovered nicely in the Hospice. You sound good. It would be great to think it was the Opdivo making you feel worse before you felt better. Sounds as if they are taking good care of you.

Best wishes.