| | 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 | Kerri,
Sorry that you will have to undergo the chemo/rad but it is what it is and getting the port is a great idea. I wish that was standard procedure. I didn't get one and man it would have made a huge difference late in the Tx for me. I didn't get a PEG and I'm I glad about that but I did allow them to put in a nasal tube for a couple of weeks post TX and it made a big positive difference.
One question, in your Signature you have 08/06/11 for the new SCC. I assume you mean 2012?
Our advice most of the time when facing the rad sessions is to tell people to EAT EAT EAT but with your recovery that may be difficult.
Also get to see a dentist and get the trays made and start with the fluoride asap. Also have them test your TSH level on your next blood draw and save that result for later just in case your thyroid craps out like some of us.
Good luck all the way around and feel free to ask anything anytime.
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 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Thank you, Amy. I'm also fortunate to have all of my OCF friends in my corner.
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: 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 | Along with the dental trays, have a complete dental exam. If you have any teeth that are questionable, they may need to be removed prior to starting rads.
Believe it or not, you are very fortunate! I know you probably think I must be crazy to see anything fortunate about your situation. What I mean is that you already have found OCF and are a well established member. You also have been around the forum long enough to know what radiation entails. To me, it sounds like you caught your recurrence very early which should mean a very good prognosis. You already know how important a good diet and hydration are in relation to getting thru rads easier. Since you have been here for a while, you understand the terminology.
Hang in there!!!
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 | Hey again! Everyone has covered everything else so I'm going to add one thing... Don't let them tell you lung mets is palliative - that's crap, it depends on involvement (I sincerely hope and doubt that you would have them as they have caught it early and there are others here who've had a secondary primary pop up and they are NED after all of that) anyway there are clinical trials available and there was someone here around Christmas who had had lung meta... 2 locations - one was surgically removed - one responded to a clinical trial drug - and that person was expecting to get an NED after their follow up scan. It was a three year thing for them. So don't accept palliative. take care.
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: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Kerri,
I'm sorry your going through this again. Looks like all the above have covered everything. I hope everything goes smoothly as possible.
When I had my PRT/CT Scan last year at Moffitt I was given the report immediately, no waiting. I hope Mass Gen. does the same to put your mind at ease.
I'll be watching for your updates, my thoughts and prayers are with you. We're all in your corner. Stay positive!
Connie ((Hugs))
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Kerri
What David & Cheryl & Christine said. Your goal to watch your children grow up and grow old with your husband is very doable IMO. Hey, even an old guy like me took the recurrence hit and I'm fine. It's scary but it will all work out
Keep the Faith
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: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Kerri,
I echo those sentiments! You can beat this, and go back to enjoying that family for a long, long time. Believe it.
Best,
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | I have my PET/CT tomorrow afternoon. I have never had a PET before, nor have my lungs ever been scanned.
I just need some hope. Hope that everything will work out.
I will keep you all posted as the information become available.
Thanks for all of your love and support.
Love,
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: Jun 2009 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2009 Posts: 138 | Be prepared to just sit still for an hour after they put the radioactive glucose in. They wouldn't even let me read a book. That was my only surprise when I went. Then I have also heard you shouldn't hug your pet that day as you have radiation in you. I don't know how critical that is. I have another PET coming up next week.
BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Kerri, thinking of you tomorrow. Of course you are scared. It's one hell of a scary procedure for what it might tell you . Notice I said might. We all hate these scans for this reason but mostly we worry for nothing.
Truly , don't borrow sorrow from tomorrow. Many positive thoughts for you.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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