#85360 12-04-2008 11:26 AM | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | Well, a few weeks ago I learned I've got metastasis to both my lungs and pleura. On the left I've got a pleural effusion as a result. The tumor board at my CCC here has determined that surgery is not and option and neither is radiation. My doctor basically told me at this point we could treat it but not cure it, and went on to tell me I should go about doing the things I've always wanted to in life. I'm 'only' 41 and I've got a wife and 4 kids to live for, so I'm not ready to just lay down and declare this fight over. I've moved to a new M.O.. He doesn't paint any rosier of a picture about prognosis but he understands my willingness and desire to fight this thing and is willing to help me that way. He's also connected to a couple of the major centers and may be a link for me to get into one of those. He sent one of my archived cancerous tissues to a lab to confirm HPV as that is suspected in my case (non smoker or tobacco user). If it's positive I guess there is a clinical trial I may be eligible for. I'm on Carboplatin, Erbitux, and 5-FU. After two more cycles we're going to scan again and see if we're making any progress. That will determine what we do next and I can't even speculate at this point. Just trying to be strong and not accept this as a death sentence. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Steve,
I'm sorry to hear the latest news. I went back and read your posts, you've been so strong through every step and you are a testament of how one should carry themselves in life's challenges. I wish I could wave a magic wand and make everyone including yourself better or say something that would take it all away. A friend of mine was recently having a hard time and I wasn't exactly sure what to tell him; for some reason, chimpanzee popped into my head...I told him (my buddy) to go out and act like a chimpanzee! We laughed...it was a good time. Being strong is good...it's what we all should be...But, if you ever feel like it go ahead and act like a chimpanzee! Can you imagine doing that in the doctor's office or a mall?
Stay strong Steve!
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Har! I used to act strange in malls to annoy my teenagers -- Walk up and ask a mannequin what time it is (and don't forget to say thank you) -- Jump up and walk on the borders of the plantings, stuf like that! It's fun!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Steve,
I wish you success in whatever you're able to fight this with.
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.
| | | | | Joined: Feb 2004 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 43 | Steve, There are 800 Cancer Drugs in the pipeline! Start doing your own research online. I like Pubmed. Check online the largest Cancer Hospitals near you. Click on Trials. See if you qualify. My belief is that you had a micro amount of cancer in your lungs when you started treatment 2 years ago. It just took this time to present itself. Keep believing that you can at least stop the progression of the cancer! Get on a trial as soon as your present treatment is not able to be tolerated or by reimaging not working. The newer drugs are easier than Platinum based treatment. Keep going, there are lots of up and downs to experience. Become your own expert, you have a lot to live for and are young. Which are both a major plus! You are climbing a big mountain. Don't give up! There are people who have had the worst prognosis and are still going strong years later. Tom
SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I know his cancer was different but just look at Lance Armstrong. The cancer had spread to his lung, abdomen and brain. Armstrong also chose an alternative chemo tx plan that would do less damage to his lungs. There is always hope and the fight starts within...stay strong.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Steve:
Sorry you have been given not very many options to fight with. Luckily you have a doctor who knows your will and knows you have every intention of fighting this awful disease. People with willpower like yours have determination and hopefullness which I think truly helps them fight harder. Hang in there, there are others who have been in your shoes and can help you.
ChristineSCC 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  | | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Steve, hang in there and hang on to every possibility! You are young, strong and have so many reasons to keep fighting with ANY THING available. Will be including you in my prayers....
Linda
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
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