| Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | I have a friend whose husband has been diagnosed with tonsil cancer (I think stage 4 t2n2b - but she's not sure). He is nearly at the of week 5 of 6 weeks of rt, with concurrent carboplatin.
When she first told me hubby's diagnosis I strongly advised her to come onto the forum, but she has so much on her plate at the moment. Her father passed away a week or so ago, and she has a houseful of people as well as a very sick husband.
He hasn't eaten since Monday, although she says she thinks he's drinking enough water. I have passed on Christine's emphatic and sage advice re: hydration and fattening up before treatment.
I'm very surprised he doesn't have a peg tube, in fact I don't think it has come up in any conversations with his doctors. Tonight she tells me the doctor has called and said his bilirubin levels are up. Could this be the effect of the carboplatin? And possibly not enough hydration? My own thoughts are she should ask for him to be admitted and have a peg placed and also put on a drip, but I don't know what to advise her.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Many people have gone through treatment without a PEG. The real question is how much weight loss has occurred in evaluating a feeding tube at this point. What do the doctors say about the bilirubin. I'm not sure we are qualified to answer that. I have had liver issues since 1972 and bilirubin is one thing I watch. It is the brownish yellow color of bile that causes jaundice. It can mean many things, however.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | If your friend's husband is refusing to eat, eventually he will have to be admitted to the hospital. My guess is if he isnt eating, he probably isnt drinking much (if anything) either. He MUST get enough calories and hydration or he will quickly become malnourished and dehydrated which will make him feel far worse than any treatment could.
Im sorry but its not possible to accurately explain about the bilirubin levels. Only the doc who has the entire report and knows the patients history, could accurately know what was going on. All I know about it is, its one thing that is an indicator of possible other issues. Having OC is hard enough, let alone anything else at the same time. Your friends husband is at the point where its really starting to get tough. Have her speak in depth with his doctor and make certain they know he isnt eating. Its only a matter of time before it will catch up with him. Poor guy!
Best wishes to all involved.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Three things: Hydration - Nutrition - Pain Management
These are critical activities. At least for water, have her fill water bottles so she can monitor his intake. Make sure he gets through 40 ounces or more each day.
At this point advise her to give him anything. Anything with nuts like peanut butter is very high in calories, anything with butter. Strive for fat and proteins.
Blend a few high calorie foods and make some liquid as that gives both hydration and nutrition in one shot.
He has to have liquid or he will get dehydrated and be in the ER in a blink. It really is so critical.
Good luck, DOn
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Thanks Christine, Uptown and Don. I credit my brother coming through treatment, with his already compromised kidneys, as well as he did because he was drinking lots of water with lemon juice, herbal teas - anything to keep the fluids up.
And re the PEG, despite being grossed out by the idea (as were we all) he was given no choice by his treating doctors - they don't treat without some sort of system in place should people be unable to eat. He always says the PEG helped save his life so I am very pro-PEG. But even if I weren't I'm surprised the concept of some sort of feeding assistance hasn't come up in conversations with the doctors.
Thanks for your responses. Life is not easy for any of you and I am grateful for your input. Have a wonderful Christmas.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | |
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