| | Joined: Oct 2011 Posts: 30 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Oct 2011 Posts: 30 | Thank you....very much........ To say the least, it is a most humbling experience, and a most appreciative one, to read your comments.
Meanwhile, a brief update. I consulted my radiation doc who was annoyed, and maybe even angered, that 7+ months had passed since I had ignored his unambiguous advice, which of course, has not changed. He noted the enlarged and hardening lymph node but was a bit relieved that the nostril camera suggested only a slight change in the base of tongue cancer.
I'm in the process now of finding out what to prepare myself for once I begin the 7+ weeks of radiation with or w/o chemo.
He did say I would need a feeding tube in that there would be significant impairment to my taste, eating habits, etc. Exactly how much impairment and for how long....I neglected to learn.
Meanwhile, I am trying to secure a living space close to the hospital.
DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | So glad you will be starting treatment. We are all here for you. Good luck!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | Good for you. NOW we can help you deal with the BS that goes along with this path you are going to walk. For as pushy as we can be, we can also be informative, and empathetic. Stick with this cyber family here and you will get through this.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Bill, I am very glad that you have finally taken our advice and given yourself a fighting chance at beating this. Here is something that has all the info any new patient or caregiver could ever need. Click on the link below then click on GTI Draft Copy. Please take some time and go thru this guide. link to Draft Copy
Last edited by ChristineB; 11-10-2011 08:44 PM.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Bill: Good for you. You will be so thankful for the feeding tube when you get into your treatments and don't want to eat - the tube will do it for you, and it's no big deal having it put in and taken out. Heck, you may not even ever have to use it, but if you did, you would have it. Good luck and keep us posted.
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 | | | | | 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 | Bill,
Ask us ANYTHING 24/7 and I am so proud that you are finally allowing yourself a chance to continue living.
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: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Bill,
I'm so happy to read your latest post. You made a difficult but wise decision to seek conventional treatment.
The folks here will be with you every step of the way, with help and advice. Please ask questions.
My Best to You,
Catherine
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Bill,
You made a wise decision. You have a family on the OCF forum you can count on for support and information. The patients, survivors and caregivers here are some of the most giving, supportive, and knowledgeable people you will ever find.
Darn right your RO would be angry with you. I'm sure he didn't like having his advice ignored, his chances of successfully treating you diminished, and his job made more difficult. Thankfully, it sounds like waiting hasn't done too much damage. And, like those of us here who were rather stern with our warnings, I'm sure he wanted you to be cured and go on living your life.
You'll get through treatment. And, we'll be with you every step of the way.
Take care,
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Bill,
Considering the fact that I am battling a second occurrence of oral cancer and really do not have a great degree of mental capacity left to worry about complete strangers, I found myself wondering about you this morning and hoping you were doing well.
What a surprise to see your post when I fired up my computer. I just finished my first week of chemo with radiation, so we will be close together in treatment schedules. Feel free to PM me at any time should you have any questions.
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
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Bill, I too had been wondering and worrying about you. I'm very gratified that you're taking the right steps. Everything Brian and others have said about the people on this site is true.
As far as feeding tube, impaired taste, etc., as all of us will also tell you: we're all different. Some get a PEG tube, others - like me - do not. In my case though I must admit that I wish I had, because trying to get enough nutrition by mouth during RT was about the biggest challenge I can ever remember. So it's smart that you're taking this step.
You'll be experiencing a whole raft of side effects and I hope your medical staff is preparing you for those. But there are also a raft of ways to help deal with them, including much you can learn here.
As David, Catherine, Sandy and Kelly have just said (and that's all I can see on this page, but everyone else here will tell you the same thing), ask us any questions at any time. We're all here for you. Best of luck getting a place to live near your treatment.
Courage! You'll get through this.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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