| Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | Amen to that Kevin! Only one problem, your to sick to care by that point! Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | David I should have known that I have the collectors series in my "B" sci-fi movie collection.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I think the Blue Lagoon movie was with Brook Shields...
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: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I just layed there and let my imagination do stories I would make up as I waited. I should have wrote some down. I had some interesting tales going thru this empty sphere they call a head. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | Chris,
Well my wife read this to me while I resting on the couch and sure enough she got me up. During the initial mask fitting they ran the machine through several cycles , calibrating I guess, which took an eternity. Finally on the third try they got what they needed but then the machines software couldn't communicate with the hardware. After they messed around for awhile they decided they had to shut down and reboot, should have had a Mac, and this corrected the problem. Meanwhile I went from calm to panic, it must have been 30 minutes complete isolation, and I started flailing my arms around. They came in and the human contact calmed me down. I was a freaking mess. I was able to complete the procedure but barely.
Good news, they will cut the eyes out of the mask for you so you can look around which is better than having a plastic sheet over your head. I made my own music disc so I can have familiar music during treatment.
I told my doctor afterwords that nowhere in this world is there a treatment that incorporated the archaic and the arcane more than this machine. It's all state of the art, firing photons and gammas rays and things that few can comprehend, yet they bolt you down to a board with a mask like some type of mid evil torture. It gets easier! Twelve down for me and twenty one to go. Hang in there.
Jeff
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | You're right about the medieval torture! It's seems bizarrely to be from another time, this mask...but it sounds like you're doing alright with yours now. It seems the fitting is probably the worst of all the sessions you have to endure...so I feel hopeful that the treatments themselves will be comparatively bearable. I will be taking my own music in, for sure. And I do hope for some eye holes.
Good luck with the rest of your treatments! May those photons and gamma rays go straight to where they're needed!
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | When I had my radiation and mask, and was bolted down when I went through the machine (20 minutes), I closed my eyes tightly and never openened them, even to peek, the entire time. I then put my mind ELSEWHERE, and hummed songs; mine were usually Christmas carols. When I first started my radiation, I counted while in the machine, but that didn't work. So, try humming a song
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 | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | a David Sedaris tape! that won't work; you'll be laughing too much!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | John once had to be unscrewed from the table b/c he was going to vomit; he sat for about an hour but still felt too nauseated to do the tx so was sent home (which means a tx tacked on the end I guess). This was even w/his nausea meds (zofran, reglan, ativan), but he feels the Ativan helps a bit overall with both nausea and then the anxiety of possibly having another episode like that one, etc. He's joked about putting his mask in the local EPA Superfund site "where it belongs" once he's done with it. A relative of a co-worker had cancer tx involving a mask some years ago, and his wife uses it to hang her earrings now...
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Music, meditation, and prayer. Anyone can get through it as it's a step towards getting better. I remember my first treatment, strapped in and placed into the chamber and BAM, I freaked (Even after all the self convincing that it wasn't going to be an issue). They were there and had me out in a split second. A little water and refocus and then it wasn't so bad. I found a little area that I could point one eye towards the corner of the nose area in the mask and I could see some light when I needed to focus. As I lost weight I had to have another mask made so I have two for halloween decor. They look cool under a black light. LOL!! Yes, a sense of humor always helps a lot. Best Wishes, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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