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#187233 12-17-2014 11:47 PM
Joined: Oct 2011
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samkl Offline OP
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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.
samkl #187234 12-18-2014 12:12 AM
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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
samkl #187235 12-18-2014 05:43 AM
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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.


Christine
SCC 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 smile
samkl #187240 12-18-2014 11:40 AM
Joined: Jan 2013
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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
samkl #187256 12-19-2014 10:10 PM
Joined: Oct 2011
Posts: 225
samkl Offline OP
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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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