#94573 04-29-2009 04:31 AM | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | I am about to start my rt treatment on 5/4/2009. I am not sure what to do about a feeding tube. Should I get it now, wait until I need it or try to go through without it? I weigh 245 currently, so I think I can make it through without it. Please let me know what you all think. No chemo, only rt 5 days a week 50x.
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | 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 | This a consult you need to have with your RO. He/she may have "rules" that they go by as in they will not stop radiation to insert the PEG, etc. I didn't want the PEG at all costs (and risks which I couldn't imagine at the time) and I lost 30% of my body weight that I couldn't afford since I was ideal weight going into Tx. I did survive despite myself but I probably made it worse by being so stubborn but hey maybe that's what also helped me get thru it (being stubborn). One thing I do wish I had gotten was a Port.
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 | wfc
Like David, I refused to get a PEG or feeding tube of any type during my first round of radiation (40 treatments for a total of 72 GY -the "maximum") and my chemotherapy. Like David I was also at a good weight ( 177 lb and 5 foot 11 inches ) and working out at the gym every day plus doing yoga and pilates. I ended up at 133 lbs and spent a half an hour for each can of Ensure I could push down (total three hours a day at the sink )
I was so proud of myself for not getting a PEG that when I joined OCF, I started brand new the PEG wars - advising everyone NOT to get one - that you would forget how to swallow- etc. I was stunned by the pushback but just decided that weak people could still type strongly. I even cheated on the weigh ins with fishing weights in my vest and blackberry etc to read above the 140 lbs that my doctors had insisted I maintain or else they would quit radiation.
I WAS WRONG AND SHOULD HAVE GOTTEN THE PEG. This time around I had no choice- after the surgery, I failed my swallow test and still cannot even do a sip of water let alone any food. I am working hard at rehabilitation therapy but with such scarring on my epiglottis and missing half my tongue muscle, it will take almost a year they now estimate especially because I need to go get even more radiation - CyberKnife after memorial day,
There are so many psychological reasons NOT to get the PEG and yes, at least FIVE people on this board (out of 6,000) did indeed get through major radiation and chemo without it. Long story short,GET THE PEG NOW because they can do it easily without a major operation like I needed. (Just got the bill in for the second PEG which was $6,000 and I pay $500)since they had to do it via fluroscope in an operating room . Right now they can put in a PEG easily, BE SURE TO GET THE BIGGEST ONE, they will get you and NOT LESS THAN 14 FR at the very minimum. Search the posts here and you will find that unlike Urology, for PEGs, Size does Matter
Save your stubborn pride for the dark times ahead and do not fritter it away on avoiding the PEG. You don't have to use the damn thing if you don't need it, but it will be there if you do, Keep on drinking and swallowing every day anyway.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi. PLEASE get one now. It's not about being able to afford losing a few pounds, it's about getting the proper nutrition so your body can fight this. My husband was VERY resistant to having one put in. Fortunately he finally agreed to have one put in 2 weeks before he started treatments. He didn't need it until week 4. He is now totally dependent on it. He does continue to make himself swallow sips of water 3 times a day but he would have never survived without it. Even with it in he has lost 30 lbs. He is 5' 9" and now weighs 143 lbs. Our RO said get it now because we don't want to have to stop treatment mid-way through to have to put one in. Best wishes to you.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | 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 | Hummm 5 out of 6000, now if only I could win the Lottery.
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 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | I did not need one. I was naive when I first started (pre OCF). I remember we spent about 3 hrs with all 3 Drs discussing in some detail. Before I started treatments they had me meet with staff to look into local housing if I could not make the 140 mile round trip. After 1st week they did a few tests and seemed convinced I would not need a peg. They did tell me about 80% of thier patients need one. I did not know any better. I signed up for a protocol that was supposed to help with mouth sores, etc but it was double blind study with John Hopkins, Anderson and a few others so they had no idea it I was on it. Later they could tell I was doing better than most so they "though" I had the real thing.
After 4 weeks into the treatments they were sure I could make it but did talk about the tubes up my nose if I needed to during the last week of treaments. I did lose about 10% of my weight but some of that was related to I did not eat any junk food. Yogurt, smoothies, oatmeal, ensure, etc instead of steak, pasta and chips. I have questioned them a few times after the fact wondering why I survived better than most. I have never received a real clear answer. Again, almost everything they told me before treatments happened exactly as they had laid out so I never had a reason to doubt them. My Rad Dr says it I have great healing genes and "took" to treatments.
If I knew what I now know from OCF I think I would go for the peg. I was just lucky
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | 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 | Please get the PEG!!!!!
I had one and still lost 65 pounds. OC isnt a diet and the doctors dont want you to lose anything. Your body needs the nutrition and will have a hard time getting it once treatments start.
I dont want to scare you but having 50 rads is alot and at about 30 your mouth and throat will be so sore you probably wont be able to eat. If you arent doing so already, eat everything you want now and dont worry about gaining weight. It could be a very very long time before you eat properly and are able to taste food so eat now.
Get the PEG tube!!!!!
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Just getting the PEG doesn't mean you have to use it, but it's there if you need it. Although I had a PEG for my 'nuking' (I didn't have chemo), I continued to drink my water and take my meds by mouth, and even occasionally swallowed my food, but for the most part I used the PEG for the food.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | wfc: Please get a feeding tube. It's not be big deal. You may or may not use it, but it's there just in case. I'm a 56 year old very vain women, and I have one. I just asked for it to be above my jeans, and I tape it up and no one knows. I haven't started radiation as yet, but I plan on still trying to orally eat my meals as long as possible.
It's better to be safe than sorry.
Sandy S.
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | 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 | Sandy said.... I'm a 56 year old very vain women,
Now that's a new one for the history books...
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.
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