| | 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 | Also tell him to eat like there is no tomorrow between now and week two of rads. Week three, if he is going to, will be the week he hits the wall. That was when mine got put in. Fatten him up like a Christmas goose, he's going to lose it soon enough.
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.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Caco,
I've been reading your posts I'm glad your Dad has decided on CCC for his treatment. I drive 2 1/2 hours north of me to go to one of the top CCC. I could have stayed here in the city, but after what I went through to get diagnosed and the treatment I headed to Moffitt Cancer Center in Tampa...as fast as I could.
Best Wishes to your Dad and your family. Keep us posted.
Connie
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: Jun 2011 Posts: 188 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | Thank you all. Yes, BIG FOOD fest for Dad this weekend!! We are putting this b*tch of a disease on vacation until Tuesday.
Hugs to you all. Caco
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | 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 | Caco,
There is an alternative to the PEG, the nasal tube, which can be inserted in a chair in a few minutes. It must be x rayed to make sure it's in place but other than that it's a snap. I refused to get a PEG, only sick people need PEGs and I wasn't sick I told myself. I had to relent post Tx and everyone convinced me to get a nasal tube. Kept it for 2 weeks, pulled it out myself at home and was soooo glad I listened to everyone as it really helped me when I needed it most.
It continues to baffle me why doctors are so quick to recommend the PEG when the nasal tube is quickly available if ever needed.Remember not everyone reacts the same to the same treatment and there are some, granted a small percentage based solely on my experience on this site, that seemingly breeze through our barbaric treatment.
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: Jun 2011 Posts: 188 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | So a bit of news, the oncologist is a positive and no BS guy. Straight talking and actually nice (first nice one, I know this doesn't matter but it's welcome). Face mask and planning Thursday followed by 35 sessions. He supports my Dad's wish not to PEG. I don't, but it's not my tumor, and he assured us that he will be so closely monitored that he'll tell us when and if it's time to PEG. My Dad's choice, he deserves at least one  The shock/crying has morphed into total defense/rage which there's probably a folder on here for. I've been reading many of these folders, at times I need to back away but you have all built a very special place here...I am so thankful.
Last edited by Caco; 07-13-2011 05:46 PM.
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Glad your dad has a good rads guy and is happy with his choices. Best of luck to him. The road is hard, but well traveled by people willing to help. Hugs and 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: Feb 2008 Posts: 19 Member | | Member
Joined: Feb 2008 Posts: 19 | I had a nasal tube...I insisted that I would have no trouble eating but when it hit me it hit hard...couldn't get a can of ensure down...My doc uses the nasal tubes instead of peg...problem for me was that they could not insert it without putting me to sleep, they just couldn't get it in AND it clogged a lot even though I was faithful in flushing it, so I had to be knocked out each time to reinsert a new one. Good news was that once I had it I felt better with getting nutrition and stopped losing weight (had lost 65lbs)
Good luck to you all...
51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I can't get the PEG but did have the nasal tube until I was discharged from the Hospital. It was removed before I went out the door. I as lucky and forced the swallowing right after surgery. I still have to force the swallow with a lot of water even tho a lot of it comes back out thru my nose. Good luck to you both and may a Guardian and Recovery Angel see you thru this.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | I suggest you speak with your CCC's treatment team and follow their recommendation concerning a PEG.
Keep in mind they are planning the dosage and placement of the radiation fields and they know their capability in managing adverse side-effects.
Significant weight loss degrades the initial radiation plan and many IMRT systems still can not compensate for these shifts. A recent study I read pointed out how few CCC actual do manual mid-treatment re-planning sessions!
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 2011 Posts: 188 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | he's going pegless for now with dr's support. but the bigger issue is the treatment delay.
diagnosed end of may with a second opinion that took up to mid july. he was scheduled to start cisplatin/rads 8/1 which is still too far out in our opinion. rads planning occured last week, the one appt i had to miss. i learned that a treatment admin came out to talk with my parents after the mask setup and told them that he could not start until 8/9 even tho he was already scheduled for 8/1. "they" meaning the treatment center need two weeks and she told them it did not matter what the drs said or what was already scheduled, 8/9 is the only option.
i've taken my deep breath, but clearly this team needs to start communicating. both dads ears are now painful and swallowing is getting harder. his oxy isn't wokring and he cannot wait two more weeks. WHO is my best point person for tomorrow's call to get this moving? i lobbyed for this cc!
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
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