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#148644 - 04/22/12 10:08 PM New to this group
notanurse Offline
Member

Registered: 04/22/12
Posts: 3
Loc: Florida
Hello all - I have been a lurker for a few weeks and decided I needed to "talk" to this group for support. My husband was diagnosed with stage 4 tonsillar cancer about 4 weeks ago - teeth have been removed and PEG tube is in place. He is 79 years old. We started radiation last Monday(twice a day), and Cisplatin treatment on Thursday - and I have seen him go downhill each day since - except, believe it or not, on the day after the chemo. I've chalked this little burst of energy up to the steroids, but he has become weaker and weaker as the days go by. We have been succesful with the PEG tube, and have even gotten him up by 5 pounds (although he is still under weight). He's had some struggles with diarrhea, and we went to the ER this morning because he was unable to urinate. He wants to fight this and I'm right beside him in the fight, but I just see such deterioration in one week, some of my hope is waning. I'd love to hear some of your thoughts on this. Thanks

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#148645 - 04/22/12 11:15 PM Re: New to this group [Re: notanurse]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 871
Loc: Ohio
Hi, notanurse
I lurked for a while before I jumped in, too. Sorry that you have to be here - but glad that you found us!

Radiation is rough - but the shock and dental work and PEG placement prededing it can't have been easy, either. I wonder if some of the weakness is the emotional reality setting in - he can probably get some help with that.

Also, you mentain that he is on twice-daily radiation: How many days is he scheduled for? How many grays (Gy) per session. And how many Cisplatin administrations? They may be trying for a relatively quick treatment period.

Take care and keep posting!
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#148646 - 04/22/12 11:19 PM Re: New to this group [Re: notanurse]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8344
Loc: PA
Welcome to OCF! Im glad you have found this site to help get you both thru the treatments. Hope you have learned alot during your weeks of lurking. There are many pages of important info on the main OCF pages also.

Sorry to hear your husband is not doing very well with his treatments. Is it possible that on chemo days that the extra hydration is what is helping him to feel a little better? Every single day your husband needs to take in a minimum of 2500 calories and 48 oz of water. His body is burning up calories and fluids at an amazing rate while he is fighting this. Im glad to hear he has put on 5 pounds, that means he is doing ok with his feedings. Weight can be difficult to keep on during treatments. Sometimes it takes a few different formulas before the patient can stomach it. Your husband will need to swallow every single day even if he has a sore throat. The swallowing muscles can 'forget' how to work and it can be very difficult to regain the use of that function once it is lost.

You can get formula with fiber or add benefiber to the formula. This can help with the diarrhea. Immodium will also help. Make sure the doctor and nutritionist are aware of the diarrhea and his inability to urinate. It sounds to me like he may be dehydrated from the diarrhea. Try some gatoraid to help with the loss of electrolytes. When I was dehydrated, I felt horrible so I can just imagine how bad he feels.

Take things day by day. Nutrition and hydration are the key to making it easier to get thru. Make this your goal every single day. Feel free to ask questions, we are here to help. Good luck with everything!



_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148647 - 04/22/12 11:19 PM Re: New to this group [Re: notanurse]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi. Sorry you and your hubby are having to go through this. You have found a great place for support though. We have all been there, either as the caregiver or the patient.
The tx is VERY hard. Kevin was 52 and the Cistplatin was a rough time, although he had 2 other chemos at the same time. We also had radiation 2x day. How many weeks will he be doing this?
You are keeping his weight up, so that is good. Is he allowing himself to sleep when his body wants him to. Kevin slept much of the time.
It's ok for your hope to wane, and one of the hardest things for me was to keep the positive attitude while in front of the kids and Kevin. I would cry in the shower, or just go for a walk and scream and pray and cry some more. Then by the time I got back home I was ok again. Please don't feel bad for that. It's normal and we love our guys and it's soooo hard to see them suffering.
Please stay in touch and let us know how things are progressing.
Blessings,
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 10/2012

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#148650 - 04/22/12 11:32 PM Re: New to this group [Re: ChristineB]
notanurse Offline
Member

Registered: 04/22/12
Posts: 3
Loc: Florida
Thanks for responding - I have used your guidelines for nutrition and water and have been able to mostly keep up with those amounts - and actually usually about 60 oz of water. The ER thought there might be some prostate issues because of his age - he was in so much pain, and they were able to get about 2000 cc of urine so no wonder he was in pain! He came home with the foley, and so now we have a new tube to deal with and need to consult yet another Dr - which is okay as long as we are making progress.
Sleep seems to be the norm - and he falls asleep even right after his naps. I know that he needs the sleep, but I am amazed at how much he sleeps.
We seem to have the diarrhea issue currently under control - and I pray that will continue. Many people have told us that almost all patients new to tube feeding get diarrhea, so I guess it's just another facet of this fight we are in.
Thank you all for your kind thoughts - I'll keep in touch.


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#148651 - 04/22/12 11:38 PM Re: New to this group [Re: notanurse]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 874
Loc: Alabama
Welcome Notanurse:
You have come to the right place to get information from others who have gone through what your husband is going through, me being one of them. Some do better than others, but the secret is to keep the formulas/nutrition via the PEG, and try to swallow some things if not but just water to keep his swallowing capability. It's a fight that can be won, and he can do it. Others will join in eventually with all sort of information and ideas for him to try. Things will improve as time goes by. We are here for you. There is a world of experience on this Forum and you will be so glad to be part of it - Welcome!
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#148661 - 04/23/12 02:59 AM Re: New to this group [Re: julieann]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4863
Loc: Toronto canada
Hi there - I'm a healthy 40 yr old... It was draining. I can imagine it's kicking him around pretty badly. The foley sucks hopefully they'll sort hat out soon! The double rads is hard... It's also a long day - I'd be curious to find out he strength and number of days as well... Hugs its hard you're doing well getting him through it!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148666 - 04/23/12 03:15 AM Re: New to this group [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8344
Loc: PA
Cisplatin can be very hard on the kidneys. Make sure you mention all of this to the MO. Since your husband had diarrhea, it quickly depletes the body of any fluids he would take in. Hope everything is under control soon so he can get rid of the catheter.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148680 - 04/23/12 11:50 AM Re: New to this group [Re: ChristineB]
samkl Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 10/02/11
Posts: 220
Loc: NSW, Australia
I echo Christine's recommendation for water. Simon had been diagnosed with nephritus several years before being diagnosed with the tonsil SCC so we were all very nervous for his kidneys with the chemo.

He drank at least 3 litres of water (with lemon juice) a day during his treatment. He came out of it with his kidney function at low normal (helped no doubt by his significant weight loss, as weight is one of the parameters used to calculate kidney function).

Even taking account of the weight loss his nephrologist thinks his kidney resiliance is "remarkable". Who knows why - maybe idiosyncratic, but I think (from a position of profound ignorance, no doubt) it's the water and the lemon juice (alkalanizing and anti-inflammatory).

Good luck with it all - it's a very tough treatment for anyone.
_________________________
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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