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radiation and nausea issues #197014
08-24-2018 11:08 AM
08-24-2018 11:08 AM
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ConnieT Online OP
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had to stop so husband could throw up on the way to treatment. he wanted me to turn around and get his anti-nausea meds so I did. We had only driven about 12 minutes of our 60 minute drive so it made sense to go get them.

even he said he wasn't expecting to still be fighting nausea. chemo treatment was 12 days ago. day 10 of radiation. just curious about other's experiences.

he did eat some broccoli soup I made for him today...made it with high fat heavy whipping cream. he had 2 servings! he asked for fettucini this weekend so I will make that as well. I think they put some fear into him about losing 11 lbs the first week so he's willing to try to eat some things. The pharmacy made up a compound of lidocaine, etc to help him soothe his throat so he will be willing to eat something.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197015
08-24-2018 12:03 PM
08-24-2018 12:03 PM
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Posts: 10,196
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ChristineB Offline

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Connie, the chemo given using the 3 "big bag" method where its administered every 3 weeks usually hits patients anywhere from 7-10 days after its given. By the time the patient finally begins to feel a little better and the side effects start wearing off, its time for another dose. So, yes unfortunately this is completely normal.


Eating is s huge issue for almost every single person who is going thru rads for OC. Most will not have much of an appetite, some have very painful mouth sores and a sore throat plus their sense of taste will make everything taste terrible... even water! When I went thru it, to me everything tasted like over salted charcoal. When a patient begins to lose weight that means they are not getting their daily minimums of 2500 calories and 48-64 oz of water. Being on day 10 of rads, do your very best to get your husbands intake turned around as quickly as you can. I do completely understand its hard and without an appetite is even more difficult but intake is one of the biggest controllable things that can help make this as easy as possible for your husband. The better your husband does with his intake, the easier it will be on him. With losing 11 pounds, even if your husband was overweight is NOT good. Im sure his medical staff are well versed with how OC patients will begin to feel the effects more and more as their treatments continue making intake an even bigger problem for many patients. If its at all possible to boost your husbands intake even if you can get every other day up to 3000 or 3500 this will help him to make this easier on him. Think of how professional athletes are eating special diets and heavily training before their seasons start. For them taking in 7000+ calories a day is the norm as they burn it off so fast, same goes for OC patients goring thru rads... their bodies burn calories at such an increased rate it takes tons of extra calories just to break even.

More things to monitor constantly thru treatment and recovery and a bunch of intake ideas.... If he's not meeting his daily water intake levels ask the doc for a prescription to get extra hydration. I guarantee after a couple bags of extra fluids he will feel almost like himself again. I always felt instantly better after getting hydrated. This can be an open prescription where he could get extra fluids a few times a week. Also pain management is another issue that can make this much harder than it should be. Make sure to relay any side effect to his doctors... especially if hearing is affected. Cisplatin chemo (not sure what is being given) is known to cause permanent hearing loss. Any change, even a minor buzzing should be discussed prior to any further doses of cisplatin.

Heres some info Ive previously shared with others who were struggling. This info can come in handy and help you get back into taking in at least 2500 calories and 48-64 oz of water every day....

Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.


List of Easy to Eat Foods

Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may will you too, they mostly have a smoother texture and are easier to eat than most other foods. I used to like the canned peaches, they would slide right down with minimal effort chewing and swallowing. One of the tricks is to get as many calories in each swallow as possible, make them count! Ensure has a liquid nutrition drink called very high calorie (VHC) sold in grocery and drug stores that has more calories than the others. This could help too.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.


PS... Centrum has an adult liquid multivitamin out. Ive been taking it daily for about 3 months and can honestly say its helped me tremendously. Maybe you could try it? Make sure you ask your doc to make certain the multivitamin will not interfere with your treatments


PSS... Take good care of yourself too. Being a caregiver is NOT an easy job! You may need to take a break once in a while to catch your breath and reflect on everything. Going out to lunch with friends, getting a manicure or pedicure, go out to a new movie are all things which will help to make an easier week for you. We have all been thru it and understand what you both are going thru.


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
Re: radiation and nausea issues [Re: ConnieT] #197016
08-24-2018 12:28 PM
08-24-2018 12:28 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
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I need to sit down and take down some info from all the good info you shared! I think part of his not eating is he wants to lose weight and doing smoothies is like admitting he is sick. I think between the pain, attitude and nausea, he has tried to not eat. Doctor is doing everything he can to get him to eat by easing pain, etc. I would guess he is eating around 500 calories a day except the few days he was eating fast food. He said he gained weight while he was eating that stuff.

I'm going out with friends but also having to drive 4 hours a day...2 to treatment and 2 hours to traveling notary jobs. I haven't minded the drives to work so much as we will need the money and it gets me out meeting people! But...I do look forward to finally having a day off this weekend to relax and do laundry.

I think I'm fighting a lot of psychological stuff more than anything with him right now. I also feel he is worried about throwing up because it will hurt....lots to ponder and maneuver these days. thanks for the info


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197019
08-26-2018 09:22 AM
08-26-2018 09:22 AM
Joined: Jun 2007
Posts: 10,196
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ChristineB Offline

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ChristineB  Offline

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I cant remember if you mentioned your husband has gotten a feeding tube? That can be a very good thing for nausea! Let me know if he has a feeding tube and what kind (PEG, G/J feeding tube, mickey button or nasal tube) and I'll share my tried and true tip to use with feeding tubes.

Being forced to face your own mortality can be a very hard thing to fully except. Many OC patients and also their caregivers need some help to get thru first facing getting a cancer diagnosis, tons of doctor appointments and tests, then treatment and their recovery phases which all can cause tremendous amounts of worrying. All these things weighing heavy on the mind can really do a number on patients (caregivers too). Being a caregiver is NOT easy which is why taking some time ust for you is so important. I dont think I could do what caregivers do and smile while holding in their tears and other emotions and always acting positive no matter how dismal their day is. On top of being a master of controlling their emotions they must also carry the weight of the world on their shoulders being their patients best advocate and navigating the medical field of test results, appointment, which doc does what, etc. NOT easy at all and that isnt even taking into consideration they usually hove careers and things they themselves must tend to. I suggest trying anxiety meds, they could be something that both you and your husband would benefit from. Ive seen many who need a little extra help to deal with everything, they usually only need it for a temporary basis.

Best wishes!!!


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
Re: radiation and nausea issues [Re: ConnieT] #197020
08-26-2018 12:39 PM
08-26-2018 12:39 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
I"m not sure what kind of tube he has. It's sticking out of his belly.

He couldn't even handle the pain from a popsicle today so going to the feeding tube is necessary. He refuses to use the numbing stuff the pharmacy made for him. I've had strep enough times in my life and describe it like swallowing razors so I would be all over that numbing med! He does like to be a martyr sometimes.

I"m just reminding myself that I am taking care of a hospice patient and not the person who was abusive to me for decades. I can't let my emotions get tied up in this or I would have already left. I do feel tremendous empathy but must keep my emotions a little removed for my own sanity.

I can see him calling it quits...he has already mentioned it. But the nurses and doctors are pretty good at moving him forward. He has 25 more radiation treatments and 2 chemo. I think the next chemo is next week or the week after. They said 3 treatments. His first one was 2 weeks ago.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197021
08-26-2018 02:34 PM
08-26-2018 02:34 PM
Joined: Jun 2007
Posts: 10,196
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ChristineB Offline

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ChristineB  Offline

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Its probably the regular PEG tube. Click on the link below to see a generic picture of the PEG tube...

http://www.phoenixmedicalservices.com/gpic.php?ItemName=Ponsky%20PEG%20Pull%20Style&Cat=0

Since he has a feeding tube there isnt an excuse to not do the feedings. Patients who get the tube need to practice using it so they and their caregiver are very comfortable with it and know how to use it like its always been there. Then when patients begin to not feel the best, they will be ahead of things by setting it up, getting into their favorite recliner and watch a good movie or read a book and let the feeding pump run for hours. Doing that overnight works best for some just make certain they are propped up so their head and shoulders are at least 6" or higher than their abdomen. Plus they should stay there in that position at least a half hour after the feeding finishes then rinse it with at least 60 ml or more. Slow is the name of the game with using a feeding tube. Start slow and build up a tolerance then a faster speed will work. Im talking about a kanagroo joey machine that pumps the formula into a patients stomach to help them do feedings easier and slower so they are more easily tolerated.

If he quits his treatments thats up to him but it is a terrible mistake to make!!! It will be the worst mistake of his entire life! Patients who are complaining after only 5 treatments are who will have a very difficult time. From everything you have said, he is someone who does not like to follow directions or listen to other opinions, he would rather do things his own way. Those types of personalities are the ones who will always struggle along making everything harder than it should be. This isnt anything you or anyone else could change... most people like this are positive they know everything! I do not know of one person who quit their treatments this early... not one and Ive counseled thousands of OC patients both here and over the phone and thru email. I only know of a couple of patients who ever quit their treatments but I havent heard from them in a very very long time. One patient I spent many hours talking to quit treatments after about 3 weeks. He passed away because he quit rads all because he wasnt able to make his singing gigs he was already booked for. Some people have a different view of priorities than others.

The 3 big bag method of getting chemo will be every 3 weeks or so. My doc sat down with me and a calendar and marked the days I would first notice the chemos side effects. Im pretty sure she said the first dose was the biggest one and I would notice the side effects around day 10 and begin to start feeling better right about when they were ready to do the second dose at the 3 week point. But, every patient is different and will have a slightly different stories with this. The patients who get weekly smaller doses of chemo usually have an easier time. Make sure he tells his doc about any issues with his hearing or kidneys as chemo can be very hard on both.

I know it is NOT easy going thru OC treatments!!! I struggled right thru with all kinds of issues and hospitalizations but I survived which really is what matters the most. I hate to say it but in all fairness if your husband quits its then only a matter of time. Patients who do not complete their rads with or without chemo will not survive. Sometimes in life we all must just suck it up and do things even though we dont want to, even if those things are unpleasant or make us ill, its a necessity he finished all his treatments.

By not keeping anything down and his intake is pretty much nothing he is setting himself up to land in the hospital for dehydration and/or malnutrition. Its happened to me and many times since too. Ive been so sick some days I cant even dial the phone or type out a text message to get help and I couldnt talk, walk or get myself up off the kitchen floor. Dehydration can rapidly become life threatening situation and anyone going thru that will feel horrible!!! I thought I was actually in the first stages of dying when Ive been that sick on a few occasions. Luckily I wasnt but boy did I feel awful!!! If your husband does NOT immediately begin to hit his daily minimums for 2500 calories and 48-64 oz of water he is putting himself right on that same path. Im telling you all this so you can be prepared. My son had to drag me out of the house and put me in the car for several of those episodes and take me to the ER. Ive also been taken by ambulance to the ER. I know your husband isnt feeling the best, almost every single patient going thru what he is would report the same thing. But!!! Patients who watch their intake and push themselves (no matter how bad they feel) to hit their daily minimums will always fare better than those who couldnt or refused to hit those numbers. It is a choice!!! Sure its not easy but being an adult and doing mandatory things are never easy. Its his choice and sadly I fear he is giving up before he really puts in enough effort to actually get thru it and recover then go on about his regular life. Some patients get into the "make up" game. Thats when they say "oh, I'll do better tomorrow. Then tomorrow comes and they say later I'll do more". Well I was one of those too and would fall asleep before I did more and tomorrow never came for me to make it up cuz the tomorrows I had consisted of feeling even worse than the day before. I grew weaker and weaker until I hit the lowest of my low days. Im darn luck I got thru everything I did. Without the people here I never could have done it.

Make sure your husbands docs have his signed HIPPA consent to talk with you about his condition. If not you may not even know if he quit or not. Keep being good to yourself and the difficult decisions your husband makes are his choice.

I hope I havent upset you by giving you TMI!!! Best wishes with everything...



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
Re: radiation and nausea issues [Re: ConnieT] #197022
08-26-2018 02:46 PM
08-26-2018 02:46 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
that's the one!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197023
08-26-2018 04:48 PM
08-26-2018 04:48 PM
Joined: Jun 2007
Posts: 10,196
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ChristineB Offline

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ChristineB  Offline

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Posts: 10,196
PA
Thats a regular PEg tube. The official name is percutaneous endoscopic gastronomy! Who could remember that or even properly pronounce it all the time? PEG is usually what most around here get.


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
Re: radiation and nausea issues [Re: ConnieT] #197026
08-26-2018 06:25 PM
08-26-2018 06:25 PM
Joined: Aug 2018
Posts: 169
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 169
went back to read what you had written out for me. I have to take a break from it sometimes as it causes me anxiety. I"m a health nut for this reason alone...I despise medical stuff.

my husband always thinks no one has ever been as sick as him. He has called the nurse multiple times and they reassure him that it's this way for most. He doesn't like that answer.

He has looked in the fridge multiple times today but never gets anything but a swig of milk. He has been out of bed a lot more today than the past week. Tomorrow is #11 radiation treatment. I think a couple of days off gave his body a little break and maybe some energy.

He couldn't even stand the popsicle today..too painful. Why would one not use the numbing solution? He is a control freak so maybe he is not facing that this is no longer under his control except to follow what they suggest for him and it seems he is opposed to most of their suggestions.

Not sure about the HIPPA stuff. I have gone to most of his doctor appointments when able which is good because I listen better! In the beginning, the doctors talked to me so I'm thinking he signed the HIPPA stuff for me to be involved.

your continued support is so appreciated! I put on the private fb group that I don't need meals but I need for my local friends to go out to coffee with me as I'm an extrovert and get tremendous energy out of relaxing with friends. A few men from church are now in the private group and have offered to help drive him when I need help. I have lined up 1 to drive 2 days as I have to renew my real estate license by taking classes right by his cancer center but he's not going to sit for 9 hours while I"m in class. He doesn't really have friends so I'm thrilled to have a few offers of help. I am thinking he will need men as he gets weaker. He's 6'3" probably 300 lbs. I'm 5'2" and about half that weight. I could not physically get him up if he falls. He's already struggling to get in and out of his low lying car. One. Day. At. A. Time.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: radiation and nausea issues [Re: ConnieT] #197030
08-26-2018 07:38 PM
08-26-2018 07:38 PM
Joined: Jun 2013
Posts: 270
alabama
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KristenS Offline
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KristenS  Offline
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alabama
The mouthwash wears off pretty quick ... it's a vicious cycle ... it numbs your mouth, but then you keep eating (that's what it's for) and so that takes away some of the mouthwash residue and un-numbs the mouth, so it hurts again, and you have to start all over. Yeah, it's rotten for every patient, but it's still rotten. And it tastes funky too. That won't be helping his mindset. Not excusing him ... just remembering what it was like. I'd go through that stuff like crazy, and then wonder why it kept wearing off ... I was sure I was doing it wrong, but it was just that much pain, by the end. (Not at the beginning, at least, but I'd had time to heal more from the surgery?Maybe?) After awhile, even 'too cold' gets painful too ... you'd think it would help numb, but not always. Mouths are surprisingly more sensitive than we realize.

The HIPPA thing is a good point. I didn't sign one for my mother, but she was with me at most of my appointments as my driver (so my husband could work), and she was therefore my spare ears. I was glad for it. My doctors never asked me for paperwork ... I suppose they figured if I let her stay in the room, it was okay to talk ... but in retrospect, it might have been good to get a signed form so she could have asked if we'd needed her to be a point of contact when I was not present. My husband would have been allowed, I think, but he would have been out of the loop on some of the day's details till we caught him up each night. You might want to double-check with his doctors to be sure about the papers, just to be safe ... if he does end up falling ill and in the hospital, as Christine described, you want to make sure you can speak and ask questions on his behalf, because he won't feel like talking, and he'll need a voice. Literally.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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