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Mary M Offline OP
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Hi - I asked a question about heartburn earlier this week but I have another question that's been bothering me.

John had his second cycle of cisplatin 5 days ago. He had heartburn for 2 days and then got help with that thanks mainly to the feedback from people on this site.

He has been very tired the last few days but does not really have nausea. However, for some reason that I can't understand, he just doesn't want to take hardly any food or water by mouth or by feeding tube. This happened for six days after his first dose of chemo but at that time he had just had his tube inserted and it was giving him some problems. Also, I felt he was in part experiencing shock from the severity of the treatment.

I don't want to nag him like crazy but he is sleeping a lot and I feel that I have to wake him up every few hours to at least take a can of food with some water mixed in. Mostly he says no. He can't describe why he doesn't feel like taking it but just says he will have something later. He does this repeatedly throughout the day until I get very cross and insist, something I don't like to do because he is so ill. He's probably had about 2 to 3 cans a day of boost plus ( 600-900 cals only) for the last 5 days.

Last night he was sick to his stomach when he cleaned his teeth but he said he thought that was mostly gagging on the ever present mucous rather than from the can he took by tube 2 hours before.

I can see him losing weight before my very eyes and the doctor, side effects nurse and dietitian have all stressed how he has to have lots of fluids to reduce the potential damage from the cisplatin.

Any suggestions on how I can successfully encourage him to consume more? Is there a psychological aspect to it? He is taking a mild anti-depressant to help him through.

Thanks a lot for taking the time to read my post.
Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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A few things occur to me.

1. What sort of painkillers is he on? Is he constipated? Most painkillers will make you constipated and that might be contributing to the feeling that he doesn't want more food or water. Also, some pain meds can themselves make some people nauseated.

2. If he's really really tired, this alone can do it. I am finishing the second round of raduation in a year (different place than the first but still) and I'm really really tired a lot of the time. When I'm woken up, I often feel like you sometimes feel when woken from a very deep sleep (stage IV sleep); groggy and woozy and even a bit queasy and it takes me about 10-15 minutes to come out of that. So waking him and trying to push food/fluids on him right away might not be the best thing. Maybe give it 15 minutes or so.

3. When I was going through rad, the thick mucous alone made me kind of constantly queasy at a low level. I had to learn to take food and fluids through the tube regardless of that and I had to take them very slooowly or I got sick.

The bottom line is if he doesn't get enough fluids and nutrition, eventually he will end up in the hosptial getting them via IV. It might be worth someone reminding him of that. It's a battle to get stuff down when you are queasy or constipated all the time, which I pretty much was, but the alternative is not pretty either.

Good luck to both of you. Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Hi
The cans of food can be very filling, maybe and this is only a suggestion, try to get the fluids in him first, when I was gravity fed I threw up everywhere I had to use a syringe and a feed would take about 20 mins, please note I only had surgery.
When my Mum was on strong painkillers she needed a few enemeas to sort her constipation, talk to the medics, they should be able to sort that..
I hope someone better placed than me can also help..
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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Mary,
What kind of "delivery system" are you using for the PEG feedings? My husband had a pump and we discovered his tolerance level to be a pretty slow speed - too much too fast would always make him sick. With the pump, I would just get it started when he went to bed and by the next morning he would have had the total number of cans that the dietician wanted him to have. It was pretty easy to do it that way - he just had to make sure he slept in a partially upright position which, with all the mucous, is probably a good idea anyway.

I do know how you are feeling about being a nag on the nutrition. I started calling myself the "food police."

This is a hard stage you are in. Things will get better.

Best,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Mary,
My husband just finished the chemo and radiation on Friday. He has a peg tube and like your husband he didn't want to eat very much. We had a pump and he hooked up at night to begin with but eventually that didn't work. He would vomit every time he tried to eat through the tube. He started going every day for Intravenous fluids and kytril (antinaseau medicine). He went through a period where he wasn't getting any nutrition at all. He wound up the in the hospital for four days to stop the vomiting. The smell of boost, ensure and everyother thing we tried would just make him vomit more. What finally worked for him was carnation instant breakfast. After he got out of the hospital we tried it through the peg tube, gravity fed (no more pump at night) and it worked. He now takes it several times a day and is actually putting weight back on. He always seemed the worse about 2 to 3 days after chemo. Even today (3 days after his last chemo and two days after the last radiation) he is nauseated but he is not vomiting and he is still able to take that carnation instant breakfast (mixed with milk).
Good luck to both of you, it doesn't get better. Take the word of one food police wife to another.
Lots of Hugs, Denise


husb dx 6/05 SCC base of tongue, neck dissection 8/05, 38 rads, 6 cisplatin chemo, completed 11/18/05 yeah!
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Mary,
Sorry, I mean't to say it does get better (not it doesn't get better) oops. I'm alittle tired myself. Remember to take care of you too! Good Luck, Denise


husb dx 6/05 SCC base of tongue, neck dissection 8/05, 38 rads, 6 cisplatin chemo, completed 11/18/05 yeah!
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Mary M Offline OP
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Wow! thanks Nelie, Helen, Anita and Denise for your help!! We'll definitely try all of the suggestions to see if something works. I know the medical team told us about the side effects but somehow they didn't really paint a grim enough picture. Maybe they did and I just didn't hear them.

all my gratitude,
Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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Mary,
My own food policewoman went so far as to put up a whiteboard on the refrigerator to keep track of what I put in. The goal was at least 2 liters of fluid and 2000 to 2500 calories EVERY DAY.

It's imperative to get the nutrition and fluids every day to help your body repair all the damage thats being done.

In the four months that I was on pain meds, I never once felt hungry. I had to force myself to eat. The pain meds will not only cause severe constipation, but they'll supress the appetite also.

Set an alarm, write it down. Do whatever you need to do to make sure he's refueling. It is vitally important to recovery.

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
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Mary,
If he doen't keep himself hydrated he can have permanent kidney damage from toxicity from the Cisplatin. He also will end up in the ER on an IV - not a fun experience (I have been there and done that). As hard as it is to eat or take in enough nourishment, it is vital for healing and ultimately will make the process shorter.
Like Chuck's "policewoman", I too kept a log of everything I ate and drank every day.

I did all of this without a PEG tube.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Hi --

To echo what Garry said -- our nutritionist said that hydration was more important than food, because of the chemotherapy and other drugs he was taking (amiphostine, for one). She calculated what amount of liquid (not just water) Barry needed to drink every day (about 72 oz) based on his weight. We kept a daily log sheet on the fridge for both calories and liquids (in fact, still keeping it for calories though liquids are no longer a problem).

It is very difficult to take in this amount of liquid and food during treatment -- my husband also did not use his PEG (it actually fell out before the end of his treatments) -- so having a "food and water policeman" on board is a very good thing! Sometimes you need to urge, sometimes encourage, sometimes just get rather mean about it <gr>

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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From personal experience, I can tell you Mary, that nagging may do more harm than good.

A couple of weeks into my tx I suddenly didnt want to take ANYTHING by mouth...Even trying to brush my teeth would make me throwup.

I can't explain all the feelings, but for me they had to do with the following:

1) A physchological connection with the tons of water I drank during my first two days of chemo. I was also told to drink lots and may have overdone it. (It can deplenish electrolites I've heard). And the water was forever linked to the nausea I experienced with the chemo. Even today, water tastes like Jet Fuel to me. (I have no idea what Jet Fuel tastes like but I imagine it's how water tastes to me), So, Seth was forced to add Gatoraid, or flavored waters to my water even when I would take it via the PEG. This helped a little.

2) The heartburn, even if addressed with meds, leaves me not wanting to eat or drink for fear it will increase, so it may take some time to get over this.

3) When my caretaker (Seth) would nag me, I grew resentful and annoyed which increases nausea (in many people) and made the problem worse. Instead, Seth began to "encourage" fluids (more important than nutrition) and would remind me what it is like getting an IV. (Does John have a port? for IV use). If not, he should know that I noticed that mid-tx my veins dissappeared due to weight loss, lower blood pressure and overall exhaustion. So, when anyone would try to get a line going it was torture...Usually an hour or more of poking me with the needle and trying all sorts of veins until they would finally get one. These experiences helped motivate me to take fluids when I otherwise wouldn't consider it!
I'm not trying to scare him, he may have NO TROUBLE at all, just relaying my personal experience.

4) Getting a "pump" for the PEG, although not necessary, was helpful for me too. I could set it to a very slow rate and not be sickened by the fast fluids going in. Real or imagined, I recall feeling sick to my stomach by the fluids going in too fast, especially when they were cold. Temperatures can make a difference, so experiment with what's best for John.

5) Also, don't discount the impact the phlegm can have on John. It made me sick. I hated it and didn't want to even THINK about taking food or fluids (even via PEG). So, It may take a little time to get "used" to it, and past this issue. I could afford to lose the weight so it wasn't as criticle for me to stay nutriated (although even obese people need new nutrition to heal and even survive this treatment) but the body can last for weeks without food. NOT without water. Remember that many of his favorites he enjoyed before have water in them and count towards his total intake, like OJ, Milk, Decaf Tea, etc. (avoid caffeine at all costs if he is dehydrated). Talk to the Drs about his weight and make sure they weigh him on each visit to monitor.

I know that Cisplat. can wreak havoc on the kidneys if there's not enough hydration so ask about this too.

In my case I lost lots of weight (60 plus pounds) but I could afford to. The sad part is, it was all muscle mostly. I don't know if that's typical but a nutritionist and/or the Dr who put in the PEG can give you facts.

I am so sorry for the long winded reply, it just hit a recent memory nerve and I wanted to share my experience in case it helps at all.

Remember, I am not a Dr, so take this for what it's worth (which is about as much as your paying for it mind you) :-)


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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Mary M Offline OP
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Chuck, Gary, Gail and Michael,

Thank you, thank you for your wonderful responses. They are SO helpful.

I "encouraged" (your gentle word Michael) John to read all the responses posted to my question and he did. He immediately said, that's what I feel like! to most of what has been written. I could tell it made him feel less alone.

thanks again. Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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