Ok just had my 2nd scan after treatment. First one showed a few hot spots this one shows 4 more and the ones shown earlier have grown.

So what do I do now?

The Oncologist said to see a pulmonary specialist and have a needle or laparoscopic biopsy done. She said I will most likely chase this forever. I was down when I left.

The SU's were all low only one over 4.5.

The radiation Dr sounded more optimistic.

Do I move to a lung cancer forum? Any suggestions?

Im very sorry about the latest check up results, Larry. I would suggest you may want to consider getting another opinion, preferably at a CCC. There are places to help with transportation and lodging. I will post the links for you a little later tonight.

The oncologist is basically saying that it's unlikely to be anything but cancer. And it's a buy time treatment. My wife wants me to go to MDAnderson.
The Radiation Dr says we should stay home.
Physically I'm doing well. My feeding tube is out and I can eat most foods. No breads.
I greatly appreciate your help in anyway.

My husband was diagnosed with lung metastases half a year after the initial treatment ended two and a half years ago. Since then he has been in two clinical trials, six cycles of taxol and carboplatin, another 20 grays of radiation to deal with an enlarged node in the paratracheal area and is now on capecitabine. If you are at Anderson, there is the possibility of participating in clinical trials since they are at the forefront of cancer research. It is, of course, possible that these opportunities are also available closer to home. You will have to inquire and then decide. You might want to consider if you want to give it your all and try everything that is on offer. One never knows which drug will work and which will not. To do so, you will need an MO who is very knowledgeable and is willing to give you the chance to try. That may mean going to a facility for which research is a priority. Of course, that may mean commuting between the hospital and home and if it is realistically possible for you and your caregiver.

Thank you Gloria. I am very glad for your husband. I was feeling so well. This came as a shock. I see Pulmonary Dr Tues 9/8/15. Need to biopsy before we decide. Good news the BOT is gone as well as PEG. They told me no more radiation, just chemo. I will try to look t available trials. I don't feel like all Dr's are completely forthright with me. But trying to stay onto of what's all going on.
really appreciate your input.
Thanks,
Larry

Larry, it wouldnt hurt to get a second opinion from MDAnderson. For me, it always raises a reg flag when a doctor doesnt advise to get a second opinion (especially when obtaining one from one of the country's top CCCs).

Hang in there and keep us posted.

Larry, I don't think I can advise anything other then what was already said, and to let you know that everyone is pulling for you!

Thank you everyone,

This has been a crazy ride. I thought I was cured. Radiation Dr said so in April, just one little hot spot on lung, don't worry it will go away.

New PET has Dr who read PET saying he is as certain, as he can be, it MET from BOT. (He even send me an email saying he's sorry.)

RAD Dr though doesn't tell me results for over a week - then says it's probably nothing, could be anything there are hundreds of decreases, could be 100 different kinds.

He wants to send me to his friend Pulmonary, putting him in charge, and doesn't want me to go anywhere else.

I don't want to see his friend I go back to ENT who says go see another Dr in same practice.

Takes a week to get in because the girl at front desk keeps arguing I am the other Dr's patient. They don't like you to change. I finally get to see the Dr I want. I am told he is direct. "Good I'll take direct."

We look at PET again, I point blank asked my new Dr is this "bad or super bad". He answers super bad and wants me to begin treatment the next day without biopsy, but my oncologist insisted on biopsy.

Had Biopsy yesterday. Hurt like hell. Hard to get at the Dr was very thorough. Hope to hear from Pulmonary Dr today. I just called his nurse and made sure she sends results to my ENT too.

I am tired of waiting. I am tired of hearing the condolences from Radiology Dr' and one's who say they have never seen anything like this.

My wife says then we need to go someplace who does.

I am thinking MDAnderson as it's about 7 hrs away and my ENT fellowshipped there. Called him he wants to wait for biopsy.

You know back when I finally got diagnosed by ENT Dr in Nov 2014 (I had gone undiagnosed from Mar 2014 - when I bled for 9 hours) saw a Dr who misdiagnosed, in late Oct I was feeling bad so wife did search and found a second opinion here. He quickly Dx me and aggressively biopsied growth, undifferentiated on both sides of neck + 4cm BOT. a few days after GASTRO went down same throat with a big hard plastic capped PEG and pulled scab off. I aspirated blood and lots of it. The X-rays show it all over my lungs. End up with pneumonia and collapsed lower lobe. Hospital stay 10 days.

Now these little nodules are scattered all over lungs. Could that be how it MET?

Has anyone looked at how the Clovis drug stock rocketed yesterday. Has anyone participated or know anything about the Tiger Trials? http://tigertrials.com

One more question. What is this called now? I was told not lung cancer but where it began - BOT. That is confusing to me.

You know this is a bitch to be stuck on this ride. They tell you get on cause if you stay here it's over. I would like to know where the ride is taking me.

Sorry for rant.

On another note a crazy criminal beat to sh_t was handcuffed to the bed across from me with a police officer in between. He was on the news, looked horrible. Told he shot at police officers in nearby Semmes. It certainly took my mind off my troubles.

Hi, Larry
It has certainly been a ride for you and your wife. I think that a trip to MDAnderson (or a remote second opinion if they offer that) is probably a good plan. I am not familiar with the trial you referenced, but their are a number of very exciting trials in progress, and you want doctors who are well up on them. Best wishes - we're pulling for you.
Maria

Today has been very productive. First yes the biopsy was squamous cell carcinoma from base of tongue.
I am going to MDAnderson. The pulmonary Dr and ENT are going over every test and pulling together records. They are making appt for me. I said I can go at anytime.
I feel better now like someone is trying to help me find curative care. Maybe a clinical trial. Save my life.
I appreciate that.
Thank you for all your advise it helped me very much. Sometimes all it takes is a little push in the right direction.
I told my wife I don't want her to feel she didn't do enough. She said she couldn't promise that unless we tried everything.
Now I have to get oil changed and pack, call my best friend who lives in Houston.
I so want to be hopeful.

Larry, good to hear you are going to MD Anderson. Drive carefully and keep us updated please.

Keep in touch with your Drs. to make sure that they get you to MD Anderson ASAP. Call them every couple of days to keep them on track. Good luck in this WAR and hope all goes well. Semper-Fi Bob

Great - glad you are going to MD Anderson. Will be thinking of you both and praying for the best.
Maria

Excellent progress Larry! Wishing you all the very best with your travels and appointments.


Here are a couple resources to help you with your travels (sorry I forgot to post these before)...
Free airfare for cancer patients
List of free airfare companies

Ok I am at MDAnderson. Saw Dr Blumenschien and now I have neck and chest
scans then see him again the see phase one Dr and possible 1 week of treatment.
He was very straight forward cancer in lungs is Head and Neck cancer, told me not curable. So I can do chemo if it works, possible immunology treatment but will depend on my Ulcerative Colitis biopsies. Going to start phase one.
Still learning what it all means. It seems I need to look for a way to buy time. I'm all for that. I have my best friend here so that's been a real boost.
Thanks for all your thoughts and prayers.
Larry
Oh Dr said I look good, everyone says that.

this sucks on the DX...
do whatever they offer you in terms of clinical trials.
eat healthfully
take supplements provided they don't interfere with whatever trial you are on.
Boost your immune system with protein...

hugs and prayers to you.

Hi Larry,

You can be sure you are in good hands at MD Anderson. My husband has had both immunotherapy (phase 1 trial), chemo (taxol ad carboplatin, and now capecitabine), another clinical trial using a nuclear export inhibitor (phase 2 trial) and two rounds of radiation to deal with swollen paratrachial nodes.

I know, all this sounds overwhelming, but his condition is stable and he does look well considering how many different treatments he has had.

If you would like to read more about clinical trials and what each phase entails, here is the link
https://www.nlm.nih.gov/services/ctphases.html

Here is the link for more information about clinical trials
https://www.nlm.nih.gov/services/faqctgov.html

If you want to read about immunotherapy, which seems to hold a lot of promise, you may want to read my posts here
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=183656&page=1

Wishing you all the very best, please continue to update to let us know how you are doing.

Dear Larry,

I've just read through your thread here and I'm so sorry that you've got this bad news.

However, I am so happy that your best friend is in Houston and so is MD Anderson!

You will be in my thoughts. Here's to living to the best of your ability. Live well, love unconditionally, and laugh until you're in tears!

Love in OCF,
Kerri

Dear Larry,
I can't say much except that I'm praying for you! YOU WILL get through this!

Ok spent 6 months on Torisel and Avastin. Had pet in May nodules 10+ and grew some twice size.
Am trying to take a break until possible molecular treatment available.
Has anyone had experience with?
I was told 2 months or 18 months. But if I am having quality of life I should wait a couple of months.
So anyone know of anyone using successfully molecular therapy for h&n met lung decease?
Greatly appreciate input. Really want to stick around if I can.
Thanks Larry

I'm sorry for your troubles Larry. I have no personal experience with immunotherapy, other than Erbitux as a targeted therapy, but two drugs are being talked about as being most significant for the past 15 years are Keytruda (Pembrolizumab) and Opdivo (Nivolumab). There are also other types of immunotherapies.

There is a big ASCO Symposium in Chicago that started today, so maybe newer reports will be coming forward in the next few days.

Thanks, my onc called it molecular is that diff from immune?

The Mda trial gave me anal fissures, high BP, high trig. Ended up with pneumonia.

Now home and clean since mar feeling better, little fatigue, cough with occasional blood in sputum.

I like to be educated on what's up and everyone one always says boy you look good. Then Dr says 2 to 18 months.

I'd like to try to stay around, do what I can. Nothing nutty. But I can travel if I have too. I married a energetic younger woman. We have a big loving helpful family.

Appreciate it if anyone hears anything. On last note just found out I am hpv+.

I don't know if it means anything. Appreciate any help.

I think it's a broad term, molecular therapy, but immune therapy is part of it, I believe. Here is an article that lists different types of targeted molecular therapies for head and neck cancer.

http://emedicine.medscape.com/article/854971-overview

Wow thanks so much!

Don't want to over burden you, but here is another listing/organization I like with many different types of immunotherapies for head and neck cancer, and their clinical trials, that you can discus with your medical team.

http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/head-and-neck-cancer

Good luck

Dear Larry,

John never wanted to find out what his prognosis was. He just kept on moving ahead with his treatments. In a way that is one way of dealing with it. It's out of his hands since no one could predict or influence how the drugs were going to work, so knowing how much time he MIGHT have or MIGHT not have was kind of irrelevant. He did make sure his affairs were in order though.

I would suggest keeping an eye on the pneumonia. Do you have swallowing difficulties? If so, make sure you have a swallowing test and suggestions on feeding from the speech and language pathologist. In John's case, the pneumonia became recurrent and became lodged in his lungs. Please don't take it lightly.

I am sorry things are not better, however, if you look good to your friends, you have to be doing something right.

Dear Gloria,

I know everyone does things differently. I was a professor for more than 40 years. My wife said I never left school. I always like knowing, my wife does too.

Well my cancer is growing and I need to make the decision of what kind of treatment would be effective and give me the best quality of life. So the more info the better I feel I am making the right choice.

I'm sorry for your loss. I thank you for your advice.

Larry

Cancer Research Institute Clinical Trials Finder
www.Cancerresearch.org

Free help even gets your Foundation one info and looks for trials for you.

I wanted to let everyone know I began Opdivo with my onc here at home. On 4th treatment. Feeling great and even forget I have cancer. Great quality of life, tumors are shrinking and enjoying life. Only side effect has been itching but I just combat hat with benedryl spray or cortisone spray.
Prior to beginning treatment thyroid gave out so on med for it.
It's all good for now, I'm very grateful.