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#158497 12-04-2012 07:30 PM
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Waldeau Offline OP
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I had my second radiation treatment today and afterward my wife and I set with the radiation oncologist. He told us that the biopsy of the pulmonary node had come back positive for cancer. This, he said, puts me in the 1 year average expected lifespan. I think I'm still numb. He said that since I haven't had any therapy to speak of his recommendation was that I continue with radiation and the 3 big bags of cisplatin and after bag 2 we could reassess. I don't want to become just a bunch of symptoms and side effects. I don't want to become a burden on my frail but PRECIOUS wife. Everybody dies, I get that of course I just want to get out of here being more positive memories than heartbreak. BLAH!


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
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"OCF Canuck"
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Waldeau no one can decide for you but you never know what effect your treatments could have and no dr. Can say for sure you're going to die... There are trial drugs that may work on your node. Im sorry for the news you received but please don't give up hope. Drs. Are educated surely but they can never bee 100 % certain. Hugs.

Last edited by Cheryld; 12-04-2012 09:07 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Waldeau,

Help me out here. My tumor as a node that wrapped itself around my corotid. My only option was radiation. I want through 33 treatments of IMRT at the University of Michigan. They did not get all the cancer. This was my second round of radiation as I had it 2 years earlier for the primary tumor on my soft palet.

U of M said at the end of treatment that I could recieve no more radiation and I had about 9 moths to live.

I went to another institution and got trated with Cyberknife. I just got a PET 6 months out from treatment that showed I was CLEAR of cancer.

Was the information about the pulmanary node the trigger for your doctor to give you such grim news? Where is the Pulmanary node?

Are you willing to look at other treatment options?

Let us know. There are many here who have been told what you just heard and the doctors were wrong. Please forward more information regarding why your doctor feels this new information makes you terminal.

I say its not over till its over and it looks to me like you have time to find out if you have other options that will save your life.

I was told by three of the top cencer centers in the US that I was terminal. I am not terminal now as I found a fourth that could treat me to the point of a clear PET scan.


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
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Posts: 8,311
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Waldeau,

Not sure where you are being treated but regardless I would RUN to a comprehensive cancer center to get another opinion. Many people are Dx'ed with lung cancer and not all die. Why is he so sure this is a death sentance? Do not give up or give in just because one doc expresses his opinion. That's just my opinion.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I agree with all of the above, and get a 2nd opinion. What does your MO say, and want to do? Don't ever give up. I also heard of H&N cancer patients with lung metasteses that were treated, and tumors were stabilized. All the best, and good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Waldeau Offline OP
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Thanks to you all. I'm reminded of a great line in Shakespeare's Much Ado About Nothing - Leonato says to a friar who has offered him a seeming long shot at solving his problem [Being that I flow in grief, The smallest twine may lead me). I had a long talk with the MO and both she and the RO say go through with the tree big bags of cisplatin and the 35 radiation and see what happens. They say, having never been treated before who knows what the response of my particular tumors might be. They say that the HPV+ status is a good sign but that there is little experience with such cancers spread. They say the odds aren't great but what will happen in this first round of treatment will actually be critical to understanding the next steps. I guess I'll go along. First bag of cisplatin was yesterday and although not nausea free - not bad. After this first bash is over I will definitely be looking to get other opinions and open to new approaches. I'm being treated at the Wilmot Cancer Center in the University of Rochester's Strong Memorial hospital.


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
Joined: Sep 2012
Posts: 381
"OCF Canuck"
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Posts: 381
Waldeau, pretty much everything is a guess in terms of prognosis here. Don't think too hard about about what you don't know the answer to, it will drive you nuts.

Good luck with your treatments and keep us posted.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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What do you mean you will wait until "after this first bash is over"? If it were me I would want a 2nd opinion on that lung node ASAP!!!!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I had mets to my lung RUL diagnosed in 2008. My initial SCC was right tonsil with neck lymph node involvement in 2005. I bought time (and one lung tumor went away!) with chemo clinical trials for the mets, and was referred to an acute care pulmonologist and RO team in July 2012. The remaining right hilar lymph node tumor in my lung has been decimated, per my November PET scan, with a combo of laser for debulking, as the tumor had caused complete collapse of the RUL; cryoablation with argon gas; brachytherapy; cyberknife. I am 65. The treatments were manageable with the primary side effect being fatigue. Waldeau, I tell you my story in the hope that it will give you hope. To learn that you have still another cancer to contend with, as you go through some harsh treatment for your oropharyngeal cancer, has got to be devastating. I wish for you tolerable side effects with your current treatment as you plan for the future.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
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Waldeau,

I was from Western New York (Lockport)now in FL. Go to Roswell Cancer Center in Buffalo, NY. Make an appointment, take all your records,disks and go. Seeing your in Rochester, NY Buffalo isn't that far. Don't give up and for heavens-sakes don't let them tell you we'll try this and see what happens. If that was said to me I'd run.

Make that appointment!!!!

Best Wishes,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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