| 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 | There is always the nasal tube for people that only need it for a short time. That can easily be done without a major surgery. Its also easier and less painful to remove.
Best wishes to your father! 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: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Gave my Dad his haircut last night and it looks good! I kinda thought it might be traumatic (haha), but I guess for a man it isn't too bad. He just got a super short hair cut. He was balding, anyways.
He has definitely made the decision to try to make it without the tube. His radiologist isn't even pushing him to get it. Basically, he said if he can make it without one, that would be best. My Dad figures if his weight loss becomes a problem, they'll force him to get one anyways. Yes, we understand his body will be broken down from the chemo and what not, but this is his choice. My Mom said she is tired of having this conversation with him. He is pretty set on his decision. I know he will be working hard all weekend to get as many calories in him as possible while he is on this break. He said he has actually gained a pound and a half in the last couple days.
We'll see. I know everyone is different and everyone has a different amount of tolerance for what they can handle. I also know my Dad is smart enough to know he can't let himself waste away and he will get the tube later if his eating becomes a major problem. I know if he can get through this ordeal without one, it wil be such a triumph for him--mainly psychologically.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | 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 | I hope your father is one of the patients who can struggle thru without the tube. Not everyone needs one. It is really a very individual decision and you have heard mainly from the pro-tube members. This used to be a huge discussion around here!
Just remember the nasal tube that I mentioned above. It can easily and quickly be inserted and also removed. Its for someone who wont need the tube for long term needs.
Good luck!!! 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: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Christine--what is considered short term for the nasal tube? Thanks for throwing that out there as an option, as well.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | 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 | I think Davidcpa had his for about 3 weeks. I would have to guess anywhere from 1 week to 2 months would probably be ok for a nasal tube. Ive seen a few members have theirs about a month.
Its a good back up plan. Keep it in the back of your mind and if the time comes where your father is struggling bring it up to him. 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Shanette
Christine's post reminded me that as the major "I don't need no stinking PEG" warrior in the PEG wars, I have been remiss in not supporting your dad's decision more vigorously. What the pegophiles simply cannot comprehend is how meaningful, what a major psychological victory, how important it is to small subset of patients to get through TX without a PEG. Part of it is ignorance of some doctors, that even late in TX, a PEG can be inserted by interventional radiology in a simple 15 minute surgery using a fluroscope. They make a very small incision precisely over the optimal part of the stomach, then insert the tube from the outside, inflate the balloon and it's done. Not even full anesthesia usually. since many doctors only know of the endoscopic way, they don't think to check with other surgery departments. But your father is so close to making it now, Encourage him and please do not make light of his "victory". When I started giving out "imaginary medals" to those of us who made it without a feeding tube, the reaction was outrage from caregivers who mistakenly felt I was slighting the courage of their patients and their patients struggles. But then when I joined OCF, it was easier to advocate getting quack therapy than to say you could make it without a PEG. You are a great caregiver and tell your dad, his imaginary medal is wairing for him. 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: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Thanks alot, Charm. You know, my Dad is definitely smart enough to know that if he isn't getting enough nutrition/losing weight too fast he will need one. He is fully aware of that, and wouldn't fight getting one if it comes down to that. He just wants to try and do it without and all we can do is support his decision.
I really do like hearing all sides to this issue. I think it's good to be well informed. I do wish more people would post who have made it through treatment without one at all, although I realize there may not be many of you.
Thanks again, everyone.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi Brandi, I know I sound like I'm pushing for it, but that was because he was already having some trouble. Now that he is getting fluids at the office, he might very well do ok. Kevin had his but hated it and got it out as soon as he could. Your Dad is a tough guy and ready for battle. This gives him something he DOES have control over. That's a good thing. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | Kris has had a PEG twice now. He is reluctant to have his removed. I think he thinks it will jinx him It is fortunate that he has not had it removed as due to aspirating recently he is now having to use it again. Hopefully only for a few weeks. I don't understand all the drama of should you shouldn't you ? It really is no big deal. Kris says it doesn't bother him at all. Mind you he has a Mickey which sits flat against the abdominal wall. 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!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I liked it so much, I had two peg tubes! I dont think mental attitude, phycical attributes, toughness has anything to do with not needing a feeding tube, but rather from the radiation dosage amount, areas radiated, bilateral instead of ipsilatral, the tumor size, types of chemo, concurrent chemoradiation, redirridation, type of surgery, etc. and other cormibities that matter more to be able or unable to eat by mouth. All the well wishing, postive thoughts or determiunation doesn't amount to much, just as the same as it does for curing cancer or other severe illnesses.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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