| | Joined: Apr 2012 Posts: 1 Member | OP  Member
Joined: Apr 2012 Posts: 1 | Just joined today. Looking forward to learning from others here - and helping when I can. I started chemo on 3/30 and radiation on 4/9 ... 3 down, 32 to go. I had a stage IVA HPV driven squamous cell in my neck, primary turned out to be on my tonsil - but that was only determined by PET Scan and tonsillectomy, it did NOT show up on pathology/biopsy when squamous cell was removed! All visible cells were removed. Doing chemo and radiation is "precautionary".
NH Artist
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! You will learn so much from this site. There are also page after page on the main OCF site with all kinds of important info. Can you clarify something? So you wrote your cancer was picked up by only a PET scan? What did the biopsy show? What about the tissue that was removed, did that show SCC? I assume your tissue was tested for HPV which is why you knew it was HPV+ SCC. Just starting out with your treatments can be a bit scary. Do your very best to get in at least 2500 calories and 48oz water every single day. This isnt optional, you cant skimp one day and make it up the next. It will make a huge difference on how easily you get thru this. Best wishes with your treatments!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - welcome... Precautionary is good! we're here when things get hard!
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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF!!
Here to help! Keep your chin up during rads/chemo!
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.
| | | | | 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 | Sorry but I don't believe your chemo and especially the radiation is precautionary. IMO the radiation is almost mandatory. At least your cells tested + for HPV so relatively speaking that's a good thing. Hang in there and we will be with your throughout this process. Have they discussed a feeding tube with you? BTW as you will soon learn you have found the BEST oral cancer site in the world. We learn from and help each other every day so welcome and use us.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Welcome NHA - I agree with David on the mandatory rads. Also that you're in the right place. Please keep us updated and ask any and all questions you can think of.
You'll get through it!
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | NH,I'll add my welcome and, as you can see, we had very similar diagnoses. I'm 4 years out now and the only problem I have is dry mouth, which is remedied by Biotene mouthwash and spray. It will probably be a while before you'll be able to eat anything so get it all in while you can. And stay hydrated.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Welcome NHA!
I am just south of you in MA! Where are you getting your treatments?
It seems like you have a good prognosis. I didn't have rads or chemo and it terrifies me to think of needing it, but SO many others have gotten to the other side and are alive and well to show for it!
Best of luck and please let me know if I can be of any help.
Take care,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi NHA - Glad you found us here! ( I grew up in NH) My son had radiation only and no chemo. It was really rough for him but he's doing great now. It really is important to keep up with the calories and water every single day. You can't fall off the required amount and expect to make it up later. Ask all the questions you can think of for your doctors or for anyone here. You can get lots of ideas for questions from the main pages of this site. Check back often and let us know how you are doing.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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