| | Joined: Sep 2012 Posts: 35 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2012 Posts: 35 | Hi All-First noticed then-small lump in neck late May; Recent biopsy confirmed SCC; laryngoscopy indicates primary as BOT along with 4-5cm left lymph node. HPV test not done yet- fired first doc, went to well known CC, that test is in process. Starting Rad/Chemo within next 2 wks. Just back from stocking up on items that I've seen suggested on here- some great ideas, so thanks in adv. There is comfort in knowing I am not the only one approaching/going through/dealing with this. Just the fact that I am TRYING to bulk up is surreal to me, but seems to be logical first step. Lyn, in NJ
Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
| | | | | 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 | Hi Lyn! Welcome to OCF!
Glad you have found this site to help get you thru your upcoming treatments. Feel free to ask questions and research as you have been doing. There is also tons of important info on the main OCF pages. Nutrition will be the key to getting thru this easier. Eat everything you can now as your sense of taste and swallow will be 'off' temporarily for a while.
Best wishes!!!!
PS... If you are anywhere near Andover NJ on Sat, the 22nd there is the 5th Annual OCF walk. Its to honor David Nastro who sadly lost his battle with oral cancer. I always attend (except the year I was in the hospital) along with several other survivors and caregivers (last count was around 12 OCF members). Survivors are free but you would need to register online ASAP in order to get a tshirt.
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, a bunch of others will be along to say hi! You'll get through this - its no picnic but you will get though it... Good luck!
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: 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 | Lyn, Your are doing everything right especially adding this site to your arsenal. Your hubby has a 70% chance that his cells will test positive for HPV which is a better outcome compared to HPV negative. Please add a Signature Line when you get a chance so you won't have to repeat yourself whenever you post. Saves responders time as well. We will be at your side throughout this Tx and recovery and don't hesitate to ask ANY question ANY time. Things in this TX can go from OK to ARE YOU KIDDING ME in mere seconds so we are here 24/7 to help anyway we can.
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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Lyn, sorry your here. Your story is far to common. I have read many posts that are just like your including mine. (See new member about 6 posts down). The good news is that this is well documented and the treatments proven. Please keep us informed of your progress. I find reading the post to be very helpful.
Best of luck.
Last edited by Hockeydad; 09-17-2012 05:46 AM.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome to OCF.Hopefully you have people in your life to support you through this because it is a hard battle but winnable with a good attitude and loving family/friends. Best to you.
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: Sep 2012 Posts: 35 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2012 Posts: 35 | LOL- I am inept on computers. I thought I had put a "signature" on; success this attempt hopefully.
Thank you all for your responses. BTW, DavidCPA; no hubby, this is all me.
I am very fortunate to have family and friends- and a puppy- who will help me through this. One of the bigger challenges at this point is how helpless everyone feels. I keep telling them not to worry, that the time Will come when I need them desperately! And again, thanks in advance, because I will be relying on you who have already started/are on this journey for info and support. As for what I have to offer? Not much at this point, because I am in full denial, which I am perfectly ok with. To me, stocking up on supplies is an excuse to shop, even if it isn't for shoes. (Please excuse the brevity; I am sure that will change over the coming weeks, though I am sincerely hoping not.)
Lyn
Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
| | | | | 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 | Ooops my bad. Luv that Signature Line.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Lyn
Welcome. Be sure to get a blood test for your TSH (thyroid hormone level) now, before the radiation & chemo. You need to know the exact number because while everyone checks after radiation & chemo, it's worthless since the "normal" laboratory range is so huge that it's individually worthless.(0.40 to 4.50)
It's an easy blood test.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Lyn,
Where are you being treated? Is it a Comprehensive Cancer Center (CCC)?. How far away from home is it.
I had lots of help from my family with a one hour drive each way to my treatments. Even early on, when I was in good shape and could drive myself, I still took the rides from friends and family. The time I had just talking with them was great. When you are dealing with something this emotional and deep, you find a completly different conversation happens with those who are close to you. I found my relationships with those who traveled this road with me became much fuller and more enriching.
Take all the help you can get early on and also later when you will need it (and you will).
Best of luck!
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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