| 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 | Michael,
By doing exactly what you're doing.....coming to this site to find out what to expect. I have always maintained that the mental aspect of this cancer is 50% of our battle so if we can prepare ourselves mentally that's one less obstacle we have to deal with.
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: Nov 2009 Posts: 2 Member | Member Joined: Nov 2009 Posts: 2 | Thanks. It is such an unknown with so many different effects for everyone. There is not one size fits all here. I am planning on keeping my life as familiar as possible. Am going to go to work, if I can and see how that goes, don't want toscare any ofmy co-workers when they notice extreme weight loss over short or long time. | | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Walknlite, it is now Friday and I still haven't heard from the chemo or the radiation doctor. I guess I'll be running around next week like crazy if I'm to start on the 16th. Keep in touch.
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: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | David, from what I understand the chemo doctor has yet to get approval for the concoction she wants to give me, so I don't know what it is yet. I am trying to eat calories like mad, but I had to get my teeth pulled so it is hard to eat anything except ice cream. I look like a monster because the shots the dentist gave me made big black and blue marks on my face and my neck dissection looks like someone tried to decapitate me.
I love hearing from people who had the same treatment I am going to have and lived to talk about it - lol. I really am usually quite brave for surgeries and I'm a fast healer, but this new stuff and the bolted head to a table ordeal is just horrifying.
I also sleep on my stomach. Will the PEG mess that up? I can't sleep any other way. OH BOY what a revolting development this is. (Anyone old enough to remember that phrase?)
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 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Bloop
Sleeping on your tummy with a PEG tube will probably not be a possibility, it wasn't for me. It is actually a tube that they insert in your stomach and about 8 inches or so of the tube hangs out from your tummy, so putting pressure on it causes alot of discomfort.
When I first had my radiotherapy, I had no idea what I was in for, so I was terrified. After a couple of days of getting zapped, I was able to lay on the table without stressing. I actually amazed myself at how well I was able to deal with the treatment. They used to have cd's playing - so I was able to try and focus on the music.
Karen
Last edited by Karen Rose; 11-06-2009 09:41 PM. Reason: typo
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I couldn't sleep on my stomach either. I actually started sleeping in a recliner so I wouldn't roll over on my PEG.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Oh boy, things are sounding worse and worse. Don, you had your PEG in for 4 months? I will probably have to get sleeping pills then to sleep in a recliner. I had an awful time sleeping the last few months of my two pregnancies and the first thing I did after I delivered was roll over on my tummy.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I did not need chemo or radiation and reading the stories on this thread is amazing. Blood and Angelina, you are both strong and you will get through this. Check out Wendy's blog titled "my Steve" it is an amazing story and he is doing well. Also ChristineB has been through a lot of treatment and is one of the most amazing people I know. Check out her story too. You will have my unwaivering support through this time.
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Bloop, I just sent you a PM. You and I seem to have the some worries and concern.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | I am finally scheduled for the port and peg to be put in this Friday so I'm assuming radiation and chemo will start next week. The surgeon said putting in the port is a 90 minute procedure!! I didn't think it was that complicated. Did everyone have to go to outpatient and have that long of a surgery for the port? I'm pretty sure I can handle that. It's still the mask that has me in a dither.
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
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