| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I am just so ready to get started. That darn ear pain has come back. The same ear pain that was there on first diagnosis and the second round. UGH!!
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: Nov 2009 Posts: 92 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2009 Posts: 92 | I feel you on the losing weight front. After all this time of wanting/trying to lose, now that it's effortless, it's forbidden.
Will be sending good thoughts for you tomorrow.
How many cans of Jevity did they say you need?
- Pam
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | They said I need about 6 cans.
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: 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 | Angelia,
You need to put calories and water through your mouth as long as you possibly can. If you get to the point where your taste is affected but you can still swallow then get some Carnation Instant Breakfast VHC which has 560 nutritionally balanced calories in the small 8 oz can. I'm sure that will cut your daily cans down by at least 2. The VHC sure saved my butt because I only had to swallow 4 cans instead of 6 and 2 cans a day makes a HUGE difference.
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: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi Angelia, I'm thinking of you today & hope you have someone who will sit w/you during Chemo. A trick I learned towards the end of using my peg: pour 2 cans into the bag w/some warm water to dilute it, all @ once! This way it goes in so much faster & you are not using as many bags & saving time. I was never hungry, I also lost about 45Lbs. Best wishes, Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | 6 cans sounds about right. Did they also give you fluid requirements. Pouring water before and after the cans go in is a great way to get enough fluids in you. Also, the dilution thing is great as well.
Good luck today,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hang in there, Angelia -
I'm rooting for you!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Angelia...Been thinking about you all day. I will look around and see if there is a new thread but I've been watching this one and I check these first. I hope all went ok today....
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) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I just go hope and posted an update on the general board.
About the Peg, I do nto have the bags, I just syringes. The Dr. told me just to take the stopper out of the syring and poor the can in the syringghe and let go down by itself.
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: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Angelia -
My docs tried me on bolus (syringe) feeding with the PEG and to be honest, it made me nauseous every time. It is also a pain the ass. With a bag you can pour 4 cans or more into it, add a can or two of water to ensure that you are staying well hydrated, set up a slow drip that does not shock your stomach, and sit back in the Lazy Boy, and watch TV for the hour it takes to drip into you. Laying down, too cold a liquid, and more can make this an unpleasant experience. If you are in bed for some reason, sit up. Really take the time to clean/flush out your PEG carefully after each use. I used to fall asleep n the recliner, and when I woke up a few hours later mine was plugged up, and hard to get open again.
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.
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