| Joined: Jul 2014 Posts: 2 Member | OP Member Joined: Jul 2014 Posts: 2 | Hi- I'm very new to posting and have never been a part of this type of discussion but am very happy this exists. My husband was recently diagnosed with oral cancer, growth on tonsils and just finished week 2 of radiation treatment. Eating very little since its very hard to swallow and trying to supplement with recommended protein drinks. They want to start him on a feeding tube this week but so far he has been refusing. He has 5 more weeks of rad treatments so it seems inevitable. Would love some input. Thank you!
My husband was diagnosed with stage 3 tonsillor cancer May 2014 and has just finished week 2 of radiation treatment. No chemo, no surgery. His skans were clear other than the tumor on his left tonsil. Since he has an artificial heart valve '95,and aorta aneurysm'97, he was not a candidate for surgery. Since he is showing early signs of not swallowing, they want to start a feeding tube this week, (7/28/14). He is now starting to accept the idea.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, Joann, if this can be moved to "introduce yourself" section, you will get more responses, and help. I had the same cancer, tonsil, which is in the oropharynx. I assume the doctors expect continued difficulty to eat, thus weight loss, that may effect his successfully completing treatment, and ultimate outcome. The worst is around the last two weeks of treatment, through several weeks after. It gets more difficult around the 3rd week. I don't want to take over this thread, but look forward to another posting.
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
| | | | 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 | Welcome to OCF! Glad you found this site to help you and your husband get thru the next several weeks. Click on the flashing tiny envelope next to the My Stuff tab. Ive sent you a private message (PM) with important info on how to use the forum. Click on the enclosed link to learn the ins and outs and get directions on how to add your signature. Please add it as soon as you can, it helps us to help you.
Radiation treatments are no picnic! They get progressively more difficult as time goes on. he hardest part is the first 2 weeks after rads ends. Best thing to do is focus on what is within your control, your husbands intake. Every single day he needs to take in at the bare minimum 2500 calories and 48-64 oz of water. This needs to be done until he hits the 1 year post rads mark. Going thru radiation treatments burns up calories at a very fast rate. His intake is what will make this whole thing easier or harder than it has to be. If he begins to have issues swallowing, encourage him to take small sips thru out the day to keep those muscles active and functioning.
Hang in there! We are in your corner and will help you both get thru this. Be good to yourself, being a caregiver is a tough job.
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 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Welcome Joann.
There are a couple of schools of thought about PEG tubes. I got away without using one. The doctor explained it to me that I should hold on to "normal" as long as I can, and a PEG is a level of care and attention nobody wants.
But the number one thing is getting that nutrition in. If the doctors have recommended a PEG there is probably a good reason, and its most likely to do with his inability to get enough nutrition doing what he's doing. As Christine and many others will tell you, it is imperative to get those calories and proteins into him for the body to deal with the treatments and repair. The more he gets in the shorter and less complicated his recovery. Also if he has any other symptoms, nausea, constipation, tinnitus, make sure he brings those to the attention of the doctors straight away so they can manage them.
Best wishes for a smooth treatment and quick recovery. Let us know how you both get on. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jul 2014 Posts: 2 Member | OP Member Joined: Jul 2014 Posts: 2 |
My husband was diagnosed with stage 3 tonsillor cancer May 2014 and has just finished week 2 of radiation treatment. No chemo, no surgery. His skans were clear other than the tumor on his left tonsil. Since he has an artificial heart valve '95,and aorta aneurysm'97, he was not a candidate for surgery. Since he is showing early signs of not swallowing, they want to start a feeding tube this week, (7/28/14). He is now starting to accept the idea.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | In addition, some key points in getting through treatment are: Adequate nutrition Adequate hydration Neck Care Impeccable Oral Care Pain Meds Constipation Care Appropriate medications for any Bacterial, fungal, or viral infections Mucocitis care Anti-Nausea Meds Thick mucus care Dry mouth care Light exercise Sleep, Rest Emotional/counseling/psychological care/medication Caretaker care http://www.oralcancerfoundation.org/complications/index.phpEach can be discussed further in detail now or at the appropriate time, if you have any questions. Certain drugs, like Cisplatin, have side effects that may cause neuropathy (tingling in hands, feet), hearing changes or tinnitus, vision changes that need to be brought to the oncologist's attention when they sart to occur, which can otherwise be permanent. Hydration is important to flush the kidneys of chemo, in addition to hydrating, reducing side effects. Good luck
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
| | | | 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 | Were his cancer cells tested for HPV? Was he a tobacco user? Re the PEG, usually most don't need calorie assistance until late in the treatment or not until the radiation is completed as that 2 to 3 week period post Tx is usually the toughest part so usually we are only talking about 2 to 3 weeks where a feeding tube is REALLY needed. There is a great alternative to the PEG and that is the nasal tube and unlike the former it requires NO surgery, involves NO pain, has SIMPLE to EASY maintenance and a Do It Yourself removal. I know because I fought the PEG but finally relented to the nasal tube which was installed (takes a minute and an x ray) in my first week post Tx. I used it for 2 weeks and pulled it out at home myself. It really made a positive difference but I am sooooo glad I didn't get that PEG. Re nutrition, look into Boost VHC (stands for Very High Calories). Have to order it online or thru w pharmacy dept of say Walgreens or CVS. It is a small 8 oz can but packs a whopping 560 calories. When the swallowing gets tough all he has to do is drink 5 to 6 of those each day. I lived off of those during Tx and well into my first year of recovery where calories are just as important. Also he needs at least 48 ozz of water each day as well.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome Joann to OCF.
Two weeks into rads is about where many start feeling the effects of radiation. Difficulty eating and swallowing is a near universal side effect, ranging from minor to extreme.
Getting calories and hydration are key and essential and if one can not do it any longer than a feeding tube is needed.
I got through without one and my team of doctors were all supportive of placing a PEG if and when necessary. They all agreed there is less chance of long term swallowing complications by continuing to swallow naturally.
It was very hard for me getting by without one. Eating and swallowing was very painful but I kept at it knowing I was forcing food down the passage I needed long term.
Liquid nutrition is fine. Use pure protein powders mixed with milk and add other high caloric foods like peanut butter and blend it up.
Protein and fat offer twice the caloric density than carbohydrates. Some tout juices and vegs which are great when feeling good but offer low calories so much pain - little gain. May as well get the max benefit for each swallow.
Good luck.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Joann,
My husband had a very tough time with radiation and had a PEG tube placed before he began IMRT with the caveat that he may not ever have to use it. Well, thank God he had one as he lost weight and would have been in big trouble without it. He actually had it for 2 years. He also had numerous complications that others may not have had. So this is a personal choice. He always felt grateful that he had one.
Significant weight loss during radiation is not a good thing as the fit of the mask becomes loose. Ideally, you don't want any breaks in treatment if you can avoid it. Radiation is cumulative.
The bottom line is that you will do what feels right for you. All the best with continued treatment.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Mar 2014 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2014 Posts: 31 | I resisted getting a PEG tube but relented and had it placed a week before beginning radiation and chemotherapy. It turns out I had a hard time getting both enough nutrition and hydration so, ultimately, I was glad I had the sense to listen to what every medical professional had recommended. I was pretty much 100% reliant on the PEG tube for well over a month - and I still lost a ton of weight. I have had it almost five months now but haven't put anything through it (besides water to flush)for well over a month. My weight has been stable for all that time so I should be getting it out very soon.
2/2014 SCC T4aN2bM0 HPV+ Tonsil/BOT 3/3/2014 PEG and port 3/10/2014 Chemoradiation therapy begins 260 mg Cisplatin x3, 2.12 Gy rads x33 4/23/2014 Final Cisplatin infusion 4/25/2014 Final radiation treatment 7/17/2014 PET scan. Lymph nodes clear. Primary tumor reduced both size and SUV (borderline hypermetabolic) so it's inconclusive. 8/2/2014 PEG tube removed. 11/24/2014 Saw MO, RO, ENT, and Head & Neck Surg. over past 10 days - all agree no recurrence but enhanced surveillance will continue. | | |
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