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#139429 09-07-2011 07:08 AM
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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
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #139437 09-07-2011 07:27 AM
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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
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2009
Posts: 618
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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.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #139443 09-07-2011 07:57 AM
Joined: Aug 2005
Posts: 307
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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


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
Kelly211 #139454 09-07-2011 11:21 AM
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Posts: 875
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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
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
julieann #139457 09-07-2011 12:28 PM
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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.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #139460 09-07-2011 01:24 PM
Joined: Jul 2011
Posts: 131
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Posts: 131
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


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


Joined: Aug 2007
Posts: 1,301
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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


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #139477 09-07-2011 05:02 PM
Joined: Jan 2009
Posts: 1,844
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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

Last edited by EricS; 09-07-2011 05:03 PM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Kelly211 #139479 09-07-2011 05:11 PM
Joined: Mar 2011
Posts: 26
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Posts: 26
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


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

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