Well, I met with my ENT yesterday and he was very glum. Looks like I have mets to the lungs. Left side shadow, right side clearly defined at15mm. Did biopsy on neck but let me know that scan shows a lot of involvement (tissue & nodes).

He didn't do this over the phone last week just said enlarged node in neck. I assume he doesn�t give this type of news over the phone. We are going to hold out hope that this is an infection but he was very clear that this does not look like that.Will get pathology back Friday.

Treatment options are limited to about zero here. He said that if it is cancer, it's in the blood stream and as soon as we surgically removed it from one place, we'll be planning another surgery.

Said I may have a year.

Kelly, I am so sorry!!!!! This is terrible news. What about chemo to help control it? Ive seen many members with mets prolong their lives with chemo. How about seeking out a second opinion? Please try!

((((HUGS)))) and prayers to you!!!!!

Christine,

You, Eric, Charm and Jim have been my greatest inspirations on this board. I am looking at chemo and may head down to MD Anderson. I have a call with a director down there who is a friend of my brother scheduled for later this week.

If there is something new out there I'll take a shot at it. Current treatment is not much of an option. I'll keep all here informed.

Love you guys.

Oh Kelly I am so sorry. Please go to MD Anderson. I bet they will have a plan of attack for you to try. Hang in there and keep us updated. Sending lots of prayers your way.

Hugs,

Shelley

Kelly, Kelly, Kelly: I'm praying with all my being that what you have is an infection. I have a friend who had a like diagnosis as yours, and after all was said and done, she ended up with a very bad bacterial infection. So, prayers will be with you, and let us know what happens Friday.
Pal julieann

Julieann,

Thanks for the king thought. I had a chance to speak with Brian Hill today. He reminded me that the lung problems may be related to aspiration issues (which I have). I remember seeing many of those issues pop up on the boards in the past but completely forgot about that. Aspirated material that gets infected will light up a PET.
So even if the node in the neck is positive, I still will want to see what the biopsy of the lungs shows. They are setting that up ASAP.
I feel I need to stop panicking even when my doctor is going in a very pointed direction. The biopsy�s will tell the tale and I will just have to wait before selling all I have and spending my last remaining days at a beach resort in Costa Rica. I may survive and spend my real last remaining days, dead broke and bussing tables at a seedy bar in Costa Rica.

God is more powerful than anything Kelly. I had lymph nodes light up with very high metabolic numbers on my pet scan. The doctors biopsied the area twice, once with a fine needle biopsy and then with a neck dissection where they removed 4 nodes. All the pathologies came back negative. They did not find cancer when by all accounts according to me ENT, they should have. I believe God took the cancer out of them. After meeting with my MO prior to those procedures, he was quite grim. Told me "we cannot get rid of those so well". As I left the parking lot in my car, I was very scared. And then I heard the voice of God say two words in my mind. "Trust me".

Kelly this is the only time I have ever made such a claim and indeed the only time I have ever heard that voice. It was so very different from my normal thoughts. It felt... foreign. Hard to explain but I want you to know that I believe it was God. From that moment on I was no longer afraid. I was literally shaking in my boots one second and completely calm the next.

I don't know what to tell you to do. But I know what I do. I fall to my knees and I pray. I surrender all that I am to God so that I am empty and at peace. I pass the buck and take the present moment for the gift it is. God loves you Kelly, he really does. And no matter what is going to happen God will not forsake you. He will be with you every single second, holding your hand and leading you toward the future he has designed for you.

All my prayers are with you

I am so sorry to read this Kelly. I can imagine you are in shock at the moment having to wait until Friday. My thoughts are with you and hoping that it really is only an infection.
It's a big {{{{{hug}}}} from me too...Gabriele

Kelly,

Brian gave you great advice brotha. My lungs lit up too and it looked bad, then it was aspiration and lived. Whatever the case it sounds like you've got a grasp on it...facing your own mortality is the hard to get your head wrapped around, it was for me.

I love the plan for Costa Rica, if you go let me know, I'll get a hall pass from my wife and go with you to hit on Hot Costa Rican women. I'm a great wingman, I'll grow a mustache and chops wear a polyester leisure suit and when they see the choice between my ugly mug and you and you're a lock!

As Charm would say, Keep the Faith

Eric

I bet MD Anderson will give you some options. My husband also has a metastasis and he is on chemo. We are also in touch with ACS because they will do a clinical trial search for you specifically. Guess we're not ready to give up the fight. We can be the statistic that survives a recurrence!
Best wishes,
Robinleigh

Kelly please try not to think negatively until you have all the answers drs. Have been wrong many times before. Get your second opinion for sure. And wait for your biopsy results! Prayers and hugs to you!

Hi Kelly, We have two letters sent certified mail to us by his RO saying that my ex-husband's PET scan showed bilateral mets to his neck from an unknown primary and that he needed to be in radiation therapy or he would die. Well, had they biopsied the areas, they would have found out it was a residual problem from his throat infection. His latest scan was clear. PETs light up lots of stuff--a friend had ribs that had been broken years earlier and they were still lighting up on his PET. Thankfully, his doctor asked a few questions before he diagnosed them as distant lung mets.

I know of two survivors whose caregivers are regular posters here who were sent home with only the hope of palliative care. They now have no evidence of disease--one of them for over two years.

Get a second opinion, or however many you need to feel like you have done everything you can do.

It is hard sometimes not to, but, please do not lose hope.

I'll be keeping you in my thoughts and prayers for you to be cancer-free.

Well Ron was told he had signs of mets to the lungs a spot was showing up as well as his spots on his jaw area that he had to have his second operation, but he never went to see the thoracic surgeon yet, he wanted to of course concentrate on the big surgery he had coming up. So we will see what happens when he gets his next PET scan. I'm also hoping it hasn't changed cuz he did have double pneumonia back in 2005 or before or after can't remember he's been thru so much crap. So prayers yours is not cancer!

Kelly,

I am so sorry that you are facing this scary turn. Clark has been followed by a lung specialist because his PETs lit up as well. His lungs light up from infection and inflammation due to aspiration. I send you peace and comfort and big hugs. My best to you-

Anita

Biopsy on node in neck is positive for SCC. Trying to getbiopsy on lungs ASAP. May be Tuesday if all goes well. After that heading to MD Anderson for second opinion.

Glad you are going to md Anderson. We are treating metastasis to bone and get a pet scan at the end of September. Hoping we have slowed it, shrunk it, or made it disappear. Not giving up this fight easily. Hopefully, md Anderson will give you ammunition to keep on fighting!
Prayers for you,
Robinleigh

Sent you a PM please let me know if you need my help with what I proposed.

Hi Kelly, I'm so sorry for what you are going through. I'm writing today to hopefully offer you some inspiration. My husband was diagnosed over 2 years ago with Stage IV oral cancer. It was in his tongue, anchoring his tongue to the floor of his mouth, a couple of lymph nodes and also his jaw bone. We got 2 opinions and both hospitals gave the same prognosis "no surgery, too extensive. Only hope is to prolong his life, not cure, but we are looking at 6-12 months". But my husband Steve faught the biggest battle of his life. He was diagnosed a couple of weeks before his 43rd birthday. I'm happy to say he is now 2 years NED. He passed the 2 year anniversary of his tx completion last month.

What I'm trying to say is never give up hope. The doctor's will always tell you the statistics, as we were told. But you and my husband Steve aren't statistics. It is possible to prove them wrong. All the best to you Kelly. My thoughts are with you. You can get through this.

Wendy

Wendy, perhaps you have given a biggest example and motivation to Kelly by citing this personal example.

Thanks Wendy,

I am scheduling meetings with MD Anderson in Houston and The University of Michigan. Spending most of today making sure all the relevant records get there ASAP.

I have heard one to many stories from those who have been told to go home and die (REFUSED THAT IDEA)and are alive today, to give up now.

You and Steve will serve as an additional inspiration to me as all of my family here do on a daily basis.

Kelly:

You fight this with all you have and you can do it! For some reason, I know, I really do.

Hugs from julieann

Hi Kelly- I think you should fight it and see how If things progress and don't seem to improve then pack it in and go to Costa Rica.
Thinking of you and hoping you can beat this thing. You've got a lot of cheerleaders here routing for you including myself.
XOXOX Kate

Well, I was able to secure meetings with some top flight folks at MD Anderson for Tuesday & Wednesday of this coming week. MDA said go ahead and get lung biopsy in Michigan before I head to Texas which I did on Friday. Biopsy procedure collapsed my lung and they cannot get it to hold up yet. Still in hospital and may be for a few more days.

So I can�t fly for at least two weeks, will miss my meetings set for early in the week with MDA and am just plain pissed off. I will try and reschedule meetings for end of week and take a train if they will let me out of this hospital. Doctor that did biopsy said it was rough (obviously) and he may not have gotten a viable sample for the pathologist, so I may have to start this whole thing from scratch if I can ever get to Houston. Pathology results in on Monday (if at all).

Wish me luck.

Hang in there brotha, as Charm would say Keep the faith

Eric

Kelly, Im so glad you are heading to a large top notch cancer center. This could make all the difference! So sorry you are stuck in the hospital! Hope you arent in pain. A train is an excellent idea!!!! Ask for a discount, maybe they give discounts like the airlines to people traveling for medical reasons. Keeping you in my prayers!!!

Thinking about you Kelly. Good luck. And hugs!

i was scheduled for surgery on 6/16 when a ct showed lung mets confirmed with biopsy at dana farber. I started chemo 7/6/11 ran 8 weeks of cetuximab or erbitex Scans show progression switched to FU5/lukevorin/carboplatin on 9/7/11 I'm new here

Kelly,

Hang in there. I'll bet that it is fairly common that patients from out of the area have to reschedule appointments at MDA. I've heard that they are very good at coordinating everything. Try not to get too worked up over this glitch. Save your energy for your journey. Are you getting meds for the pain? I had a small pneumothorax a few years back and that hurt. My best to you and your family.

Anita

@Kelly: That is an awful development with the collapsed lung. I hope you are able to get to MD Anderson right away. Keep moving forward. We're with you every step of the way. I'm keeping you in my thoughts and prayers for enlightened medical care at MDA.

@jcigala: I'd like to ask you a question about your treatment, but I don't want it to get all mixed up in Kelly's thread here. Would you mind starting a separate thread? It would be good to post it in Introduce Yourself forum in the list of forums. I hope you are doing well.

This was just in my inbox from the NCCN. new non small cell lung cancer guidelines:
http://www.nccn.org/professionals/physician_gls/pdf/nscl.pdf