Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
radiation and nausea issues #197014
08-24-2018 12:08 PM
08-24-2018 12:08 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
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 01:03 PM
08-24-2018 01:03 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
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 01:28 PM
08-24-2018 01:28 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
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 10:22 AM
08-26-2018 10:22 AM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
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 01:39 PM
08-26-2018 01:39 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
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 03:34 PM
08-26-2018 03:34 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
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 03:46 PM
08-26-2018 03:46 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
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 05:48 PM
08-26-2018 05:48 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
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 07:25 PM
08-26-2018 07:25 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
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 08:38 PM
08-26-2018 08:38 PM
Joined: Jun 2013
Posts: 287
alabama
K
KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
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
Re: radiation and nausea issues [Re: ConnieT] #197031
08-27-2018 02:57 AM
08-27-2018 02:57 AM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
good advice Kristen. I will ask about the HIPPA today


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] #197036
08-27-2018 10:13 AM
08-27-2018 10:13 AM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
*** Below is a small book about all kinds of tips to help patients and caregivers. Every patient is different! The info below may or may not apply to every single patient but its all generally helpful to most.***

Connie, just so you are prepared, patients going thru rads almost always end up needing help in one way or another. Your husband is very lucky he has you!!!! Although he says he feels lousy, he still is in the beginning stages of treatments. The hard days are down the road. It wont be long before he starts to really notice the effects if treatments and wish he was back to the first week of rads where he actually didnt feel too bad. Hopefully he is able to see how much he depends on you and what a great caregiver you are. Some patients can get pretty ugly during rads and during their recovery. Many are under the assumption when rads ends, they will magically be well in a day or 2. This is NOT even close to how it usually goes! In the past I have broken it down to a very general guide for caregivers so they're ready for when the treatments get difficult. I am NOT telling you (or anyone else reading this) to cause any worrying or anxiety. Its so much better to be prepared instead of drastic changes happening seemingly overnight.

Patients can go downhill very quickly, especially when they are not meeting their daily minimums for calories and hydration. As treatments continue patients will feel progressively worse. Only around 10% of OC patients are lucky enough to sail right thru rads with barely any side effects or pain. Those lucky few Ive noticed over the years usually do not have chemo and are the ones who are going above and beyond on their daily intake minimums. But Ive also seen a few patients getting chemo with their rads do exceptionally well, again its almost always those who are hitting and exceeding the daily minimums of 2500 calories and 48-64 oz of water. Patients who are overweight will incorrectly think it doesnt make a difference if they're skimping on their intake as they could stand to lose a few pounds. WRONG!!!! That type of thinking will catch up to them sooner or later. Losing large amounts of weight during rads/recovery can make the patient feel lousy. They are not just losing weight... they're losing muscle too! Its next to impossible to get muscle back when its gone. Plus this also will make the patient feel weak, worn out and notice significantly less stamina so even something as simple as climbing stairs will takes more effort. Intake and weight are such a huge part of getting thru treatments and recovery that even patients considered obese need to work hard to avoid losing weight. Ive noticed patients who struggle pretty much right from the start with losing a few pounds here and there eventually begin losing several pounds in only a couple days time which is a signal their skimping is catching up to them. If you are able to speak to your husbands medical team and ask them to notify you if your husbands weight loss starts to become a problem. If your husbands weight loss is anything like mine (lost over 32% of my total body weight) he could lose 100 pounds or more in about 2 months time which is not only very unhealthy but dangerous too.

Patients during the first 3 weeks of their treatments patients should still feel pretty good. Unfortunately not all patients will be feeling ok, for an unlucky few they will feel lousy right away in the first week or so. Those doing the 3 big bag chemo will start having nausea and possibly diarrhea around 10 days after the chemo. For some it hits them hard!!! Even a few sips of water can trigger their nausea. The nausea is so bad they must take prescription anti-nausea meds around the clock even if they think they are ok. When they stop the anti-nausea meds they quickly will see they are not noticing the chemo's side effects as the meds were working. The worst part of not being able to keep things down is everything that comes out must be somehow put back in... plus their daily minimums. This is very, very hard to do!!! If he isnt able to keep anything down, even meds your husband may need the prescription anti-nausea meds in suppository form. Definitely not fun but if it helps control his nausea then its a necessity. During the worst of it, getting extra hydration helps to avoid dehydration. If the doc hasnt already done so, ask for a prescription to get extra hydration when you notice your husband starting to drag and you know he isnt getting close to even half the minimum daily intake. For your individual situation this wont be easy to know how much your husband is taking in but the scale doesnt lie. Being he is around 300 pounds he probably needs even higher daily calories during rads and recovery phases, Im guessing at least 3000-3500 calories daily would be enough. Just around the end of the third week of rads, most patients feel a little better but then its time for more chemo and in 7-10 days the nausea and other chemo side effects will show up more prevalent than their first chemo. Right from the start patients should be using ointment on the red areas caused by rads and doing mouth exercises several times a day. I'll explain more about this in the next section. If the patient is starting to feel lousy during the first 3 weeks, try to give them small daily goals so they can feel like they're accomplishing things. Every single person needs a reason to get up in the morning, they need routines and to feel useful. Walking the dog, vacuuming, getting the car washed, cleaning the garage, organizing the attic, or other light duties help to keep patients busy doing positive things that can help to keep them motivated and from worrying too much. Ive found staying busy is a wonderful way to divert attention from the "what if's" to more positive thinking. I used to clean out my closets every time I started thinking "what if". I moved to doing dressers then my kitchen when I started running out of things to organize. Next was reading books that kept my attention helped keep my mind off feeling sorry for myself.

Phase 2, weeks 4 and 5 patients going thru rads will notice their sense of taste has changed making almost everything taste bad. Patients will describe their sense of taste as everything tastes like cardboard, charcoal, burnt, overly spicy or salty. They also will begin to notice swallowing isnt as easy as it always had been. Swallowing is something very important so even if a patient is strictly getting their nutrition from a feeding tube they still must keep swallowing even if its a few sips of water every hour or so. This keeps the swallowing muscles working. If patients have not yet begun doing mouth exercises the doc or nurse should have gone over with them, they will start noticing their mouth doesnt open as wide as it did before starting rads. Once patients lose their mouth opening flexibility, its not easy to get back. Some find the Therabite device or Dynasplint trismus systems are helpful. If insurance doesnt cover it, they are quite pricey! Some patients have physical therapy along with their rads and recovery to help them retain their mouth opening as much as possible. PT helps patients who have had neck dissections to regain as much mobility as possible. Many will notice the skin on their cheek, neck are starting to become sore. Some patients have open weeping sores that are painful. Every single day from the beginning of rads, patients should be applying ointment or some kind of skin cream to help with the rads effects, its kinda like a bad sunburn that gets worse as they go along. Make sure if they havent begun using the ointment to do so immediately. Pat it on and let it soak in but NEVER apply before going to rads as it could effect their treatments making them less effective. Common over the counter aquaphor, vaseline, or other thick healing ointment or cream should help. Ask the doc for a prescription to get beta-val ointment/cream or any other type they would recommend. Mouth sores usually become more bothersome so the magic mouthwash probably will get used more. Manuka honey has been scientifically proven to help with the mouth sores. From the feedback received from our members this works wonders. Theres many versions of manuka honey. The darker, thicker, and higher concentration means the more expensive it is and the better it will work. Talk this over with doctors to see what they recommend would work best for your husbands situation. Heres a few sites to read more info about it...

Manuka honey info website, OCF does not endorse or promote any specific place to buy

Livestrong, Manuka Honey

Healthline site, Manuka Honey Info

Make sure any prescriptions given have refills on them. Any controlled substances used will have special rules that go with them. They must have a new prescription and will not have refills so every month the doc needs to give another prescription. Patients should notice a small round bald spot usually located right above bottom hairline on the nape of the neck. Thats where the radiation beam exits. Hair will eventually grow back but not right away. Men notice their shaving much less facial hair as well. Most patients will start becoming more fatigued and sleep more. They may also suffer from insomnia. Too much on the mind can impact this as well. Below is the link to our main OCF site. You will find many, many more pages of important, helpful and most importantly correct medical info including anything and everything from symptoms to diagnosis to treatments including info delving deep into types of rads, to nutritional support for those with or without feeding tubes, complications and even risk factors. Far too much info to include here...

Oral Cancer Foundation main site, Understanding

Theres a million other things I could touch on but I think this already is far more info than most people want or need to be prepared. When I first started writing this I kept thinking of more and more things then before I knew it I had written a small book (SORRY!!!). I hope you find this helpful!!!






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] #197041
08-27-2018 11:45 AM
08-27-2018 11:45 AM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
wow! you hit it out of the ballpark with info!

I talked to the nurse about HIPPA and she said they don't bother with it if they are seeing the caregiver coming in every day.

They made him stay today after asking me how he is really doing when he left to go to the bathroom. I said he will not eat or drink anything and will not use the numbing liquid. She said, well, then he is going on the feeding tube today! This lady is wonderful and we are blessed that she works at Mercy Cancer Center.

She said those who are uncooperative do not fare as well. She said he hit the bad place early and still has a long way to go but said if he keeps up the fluids, he will feel considerably better. I told her that I have heard that repeatedly from this group but he is quite controlling and will not listen to me. They are so on top of this, I think they will put him in the hospital each time he pulls that martyr stunt. They have no tolerance for it.

I have manuka honey already! I'm a health nut so I had bought some to try out for myself awhile back.

He has already lost taste but hasn't said things taste bad yet. He could barely open his mouth before so this trismus I read about is going to be an issue. He is not going to the PT at this point though I believe he went before treatment started. That's today's update. I will take in the info again later after I get back from 3 hour drive (on top of the 2 to the hospital already today) to a notary job. I look forward to driving and meeting strangers as it will give me a time away from all this.

I'm really defeated today. flat tire, 2 service calls to fix water heater, 2 other heavy burdens, listening to someone moaning all the time. Yep, I'm weary already plus I got chastised for not having a backup driver today since I had to cancel some of my business due to his hospital stay. We live an hour away, I am new to this cancer stuff, etc......I will survive. I know it all sounds trivial as I'm not the one in pain but this is NOT an easy job.



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] #197043
08-27-2018 12:36 PM
08-27-2018 12:36 PM
Joined: Oct 2012
Posts: 1,056
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,056
Toronto, Canada
They will probably give him IV hydration at the hospital. It can easily be five hours just getting enough fluids into him. My personal observation is, while food is important, fluids are even more so while a patient is undergoing radiation. In addition, has he been given exercises to do for trismus? It’s important for him to keep doing those all through. One side effect of radiation for head and neck patients is trismus. Not being able to open his mouth can be a problem down the road. John needed a procedure that required general anaesthesia. Before the doctor could do the procedure, they had to consult the anesthetist to see if John could be intubated because of his narrower mouth-opening.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: radiation and nausea issues [Re: ConnieT] #197045
08-27-2018 07:58 PM
08-27-2018 07:58 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
gmcraft, yes it was 4 hours of an IV before they released him today. stinks living so far away from the cancer center especially since I am driving 2 hours a day for treatment then 2-3 hours more every day for my notary business. It's getting old real fast.

He was given exercises but I can guarantee he is not doing them. He's been rebellious about every step of his treatment. I'm letting the nurses tell him how this is done if he wants a successful result. He already can barely open his mouth unfortunately.

He seemed willing to try the manuka honey.


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] #197046
08-27-2018 08:23 PM
08-27-2018 08:23 PM
Joined: Jun 2013
Posts: 287
alabama
K
KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
alabama
((hugs))

Wish I could make some of it better. It took me getting real sick before I got into audiobooks ... but your car trips sound like a good time for some books, if that's your sort of thing. (I resisted them mostly because I read too fast and audio goes too slow ... but I've found some I absolutely love now, and they get me through sick times really well ... long trips, too.) Do you have anything like that to make the trips more bearable? Or are you already doing that?

Those exercises will be important for him. I wasn't given any (I've learned so much here about things that have changed over time, and things I might ought to have been told!) but I was lucky that I was okay without them. Probably because I talk too much, and that made up the difference, LOL. But if he's already struggling, the nurses will want to get stern with him because he WILL be able to get better from the cancer, and then the therapy will be a lot harder and he'll wish he had the jump-start. Not that you don't already know this ... but he'll need to figure it out. But the nurses can be the ones to deliver that message, if necessary ... it doesn't have to all be you. This is something they are trained to do, and used to doing, and that's okay. You do have to take care of YOU too, as you are able.


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
Re: radiation and nausea issues [Re: ConnieT] #197048
08-28-2018 09:29 AM
08-28-2018 09:29 AM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
thanks Kristen!

He got up super early this morning so the IV hydration must have made a huge difference. Me, I got too little sleep because of his early rising! I"m exhausted but meeting a friend for coffee this afternoon and get my tire fixed. These little annoyances seem like mountains when you are already climbing another mountain.

I listen to a religious radio station on the drives. It's soothing to me as long as they don't chatter too much.

He can barely talk at this point but has never been one to talk much. I will continue to let the nurses nag him as I'm catching myself overly irritated with him this week due to my tiredness.

We got a letter stating he has disability until October 18th. His first paycheck gets deposited on Friday. Still a little nervous about income and how much will be coming in the next few months. His place of employment is trying to incorporate his vacation time (still had 4 weeks) with disability so hoping for regular pay through this.


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] #197050
08-28-2018 12:46 PM
08-28-2018 12:46 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
If any disability gets denied make sure to appeal it. Sometimes those types of things come thru with an automated denial then when someone appeals its granted. I guess its all about the money which is a darn shame to me. Dont be surprised if your husband needs to extend his disability. Even the easiest jobs where people dont do much more than sit taking it easy takes alot out of someone who is trying to recover from fighting both cancer and its brutal treatments. Recovery is going to be another hurdle for your husband. Recovery can be a long and frustrating time for patients who can NEVER, not ever get well as quickly as they think they should. I do not want you to worry about that at all!!!! One step at a time and thats all you can do. HE is the one who must get thru his treatments and recovery. While he is recovering... you must take care of yourself!

Have a great day smile



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] #197051
08-28-2018 05:35 PM
08-28-2018 05:35 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
a friend and I met today and it gave me energy to get through another day. I had a meltdown yesterday and was still recovering today. So tired from juggling my business and hours of driving every day. He's getting on the medical team and my last nerves with his controlling behavior. They set him straight yesterday. i am in a better place now to stand up to him and not tolerating it anymore. HE NEEDS ME. He will learn I'm much stronger and will not put up with it.

The doctor did say at the first appointment that he would still be recovering and not up to par at least another month after treatment. I'm glad I listened as husband thought he could still work full time through all of this!



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] #197052
08-28-2018 07:21 PM
08-28-2018 07:21 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
Ive only seen a handful of people who were able to work thru their treatments. Those were the ones who focused intently on their intake and did everything the doc told them to do. When going thru rads w/ chemo patients will become super sensitive and can pick up anything and everything they come in contact with. They need to avoid crowds, enclosed spaces that have lots of people (bus, subway, elevators), children, schools, public restrooms, people who are sick and they should also pay attention to washing their hands more frequently and using hand sanitizer more often. With their resistance nil, dont be surprised to see as your husband goes thru treatments and recovery phases he picks up more colds and (hopefully not) the flu too. Many patients will notice their bloodwork numbers are wayyyy off and take a very long time to get back to their normal numbers. For me, I was greatly surprised to see it took years! When your husband goes places where he could encounter people who are sick and pick up all kinds of unwanted germs to make him sick, he should wear a mask and carry hand sanitizer.

Depending on what career people have factors in with how soon they can return to work. Most patients need at least 2 months after finishing rads before they can return to work, others need 4 or even 6 months. I went back about six weeks after finishing treatments, but only part time to my office job. I was still not the best but luckily I had an office job that didnt require physical strength and stamina. My job did however require memorizing complex details and adhere to government regulations which I struggled greatly with. Chemo brain to me is a very real thing!!! If your husband is able to go back to work even for a few weeks on a part time basis that will help him to ease back into things gradually. Most patients believe they are stronger and their health is better than what it really is. Rushing to return to work doesnt always work for everyone. It all comes down to the patient and their ability to pay attention and follow doctors orders along with focusing on his daily calories and water intake.

I was so happy to see you were able to do something just for you and meet a friend. Im sure this helped to take your mind off everything that you are juggling. Do your best to make being good to yourself a routine. It really does help!!! You are so right with.... "HE NEEDS ME"!!!! In time he will understand his world has changed drastically! From what you have said, Im sure this wont sit well with him. I hope one day your husband will come to his sense and see the big picture where he can finally appreciate everything you have done and continue to do to help get him thru probably the worst time in his life. Yes, he absolutely does need you and maybe one day he will this too. How I wish caregivers all were treated with respect, appreciation, kindness, and awe for how selfless they are while carrying the world on their shoulders.


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] #197053
08-28-2018 07:36 PM
08-28-2018 07:36 PM
Joined: Jun 2013
Posts: 287
alabama
K
KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
alabama
Dittoing Christine! My job was already (fortunately) homeschooling, and Scout leadership and other youth work. That was / is volunteer work, but still needed doing. Luckily my co-leaders stepped up and filled in the gaps with both my girls and my guys so I could just go as I felt able, in the beginning. (There was a humorous meeting where I went just to help out one night and the project ended up being about writing haiku, and it turned out I was the only adult who'd done any ... and I'd just had the surgery and could barely talk ... gah! Try pantomiming haiku! LOL. But we did have a blast.) After a time, though, I had to let it go no matter how much fun I was having, because all those people meant all those germs ... and it wasn't something I could risk. And then there wasn't the energy. It taught my scouts a lot about being supportive of folks who need help (and continues to do so), but it was frustrating to adapt to ... and I kind of expected it.

I had some sweet caregivers from church who helped get my children to some of their special activities when I couldn't ... they arranged it between them, and I didn't always know who was doing what (it was a small group, and all women I trusted, but I didn't know who was driving which days) ... and even today, my memory is fuzzy enough, I don't recall who all helped .... I wish I did. I'd thank them more. I thanked them at the time, but I'd thank them again now, because it really helped us all. Caregivers are a big help, in more ways than they realize. So, because I can't thank all of them, I'll pay it forward and thank you instead. smile Thank you for being a caregiver!


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
Re: radiation and nausea issues [Re: ConnieT] #197054
08-29-2018 09:19 AM
08-29-2018 09:19 AM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
((((((Hugs))))))) to you Christine and Kristen. You have been rocks for me in this. I've told people that it's interesting that survivors are helping carry me along in this journey but then, it shouldn't surprise me as you know every step that is ahead in many ways.

Today, i posted on my husbands private fb page a picture I took. There are puzzles set up at the cancer center. I love building puzzles...it helps me relax in stressful times. Well, there had been this hard huge puzzle sitting there for over 6 months according to other patients and no one would build it. It was horrible and I'm really good at puzzles. Since husband had to get that IV the other day, I had 4 hours to sit and finish that darn thing. Now we have 2 easier puzzles of just 300 pieces sitting out! I names myself puzzle director! I came in today and someone was so happily sitting down and building a puzzle while he waited for his appointment. It made my heart sing. I will be bringing some cat puzzles in next week!. I posted on the private fb group the things i have seen that ill patients and their caregivers can appreciate.

Someone donated some LuLarue pants for patients/caregivers. I've heard they feel like butter on the body. How thoughtful!

The cancer center has a healing garden. They grow a lot of herbs/vegetables and the nurses go out daily to pick the stuff ready to harvest, bag it up in serving sizes and label it. There is also a long table of fruit that a local grocery store donates. I"m quite impressed with the Mercy Hospital system and trying to teach people better how they can help.

Next...my friend convinced me to meet with husband's co-worker to set up a schedule for driving 2 days a week. After my meltdown, I realized we are just getting started in this and I will burn out despite how strong I am. I told him to drive himself Thursday and Friday. He is capable. Next week is chemo #2 and he will be hospitalized. I will drive the rest of next week but starting week 5, I'm enlisting help. I don't want anyone to have to deal with someone throwing up on the 2 hour drive....they probably will never offer again!


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] #197055
08-29-2018 12:08 PM
08-29-2018 12:08 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
If you havent already contacted the American Cancer Society (ACS) about their volunteer driver program call them ASAP! They're available 24/7/365 so you dont have to worry about what time you are calling, someone there can and will help. I think I may have mentioned it to you, if not Im sorry I havent done so yet. Theres so many things to relay to newer patients/caregivers that more minor things can get easily missed. There really are people who will happily volunteer to drive your husband to and from treatments..... even far distances, even if he is nauseous, even if he is grumpy!!! They attend a class on how to manage those things ------ even if the patient pukes. They always carry a puke kit with them! My suggestion would be to get each of your helpers to pick a day they can commit to driving your husband and then you will know which day/s you must be his driver. I think it would do him a world of good having someone drive him who is a cancer survivor. He could talk freely to them and they understand what he's going thru... well kind of... OC patients tend to have it worse than most other types of cancer patients with treatments affecting their ability to eat, talk, etc. Plus if you have alternate drivers it will give your husband time to reflect and see just how much you do for him on a daily basis, hopefully he will appreciate what you do. I had volunteer drivers (total strangers) spend 3 hours a day in the car to get me back and forth to my treatments. I was so impressed at their kindness that I became a volunteer driver too although I rarely have the time anymore.

Your husbands co-workers are a great resource!!! Use them!!! Anyone who volunteers to help are asking because they care and really do want to help. In the next couple weeks your husband will probably begin feeling the effects of treatments even more. Im sure you could use a hand with some things around the house. Even if it is just a neighbor put in charge of taking your garbage and recycling out to the curb and returning the cans every week, its a help. Some weeks I sure wish I had someone to do that for me! I suggest you can start by making a list of all the things you have to do without your husband doing them and build it from there. Take advantage of friends, relatives, and co-workers offers and give them "jobs". Cancer can bring out the best in some people, dont be surprised if people you barely know offer their assistance.... take it! Some people show their worst side when someone close gets a cancer diagnosis. Some will freak out and run for the hills like its contagious then come slinking back once the patients recovers. I was very surprised at some co-workers I hadnt known that well really stood up and tried to help me while a few very close people couldnt be bothered even returning a text or phone call. As the caregiver you have soooo much on your shoulders that a hand here and there will be a huge help to you.



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] #197059
08-29-2018 08:39 PM
08-29-2018 08:39 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
I am blessed to have found this group.

I looked and there isn't any American Cancer services in my area at all unfortunately. I am enlisting his co-workers to help me twice a week after next week. I asked the gal who is coordinating drivers to meet me for lunch next week just so we can meet. I do not know her but I so appreciate all the support a total stranger has given me. You are correct about the people who come out of the woodwork to help and the ones who seem to disappear. I have a feeling I will be a better helper to someone else in the future from all I'm learning.

Another friend texted and asked to go out tonight to take care of me. I'm an extrovert so being around people gives me energy. I needed that after my meltdown the past few days. I also took a long nap this afternoon to refresh my body. Even took a long walk.

I noticed no one else in radiation treatment is having someone drive them every day. I told him that I'm taking a 2 day break and he can drive himself. I know that driving will not be possible after this week but I'm taking a break as I still have to drive for hours for my business most days....I am taking care of me first so that I can take care of him when he really needs it.

thanks for all the support and wonderful information!



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] #197060
08-30-2018 06:10 PM
08-30-2018 06:10 PM
Joined: Apr 2018
Posts: 48
D
DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
Contributing Member (25+ posts)
D

Joined: Apr 2018
Posts: 48
I probably could have driven myself through a lot of my treatment, the last 2 weeks, no. Luckily my husband and I are both retired so he drove me most days then would take me to Jamba Juice for a smoothie.He even got a round of applause from the staff when I rang the bell at the end of my treatment. It meant a lot to me and hopefully your husband can appreciate what you are doing for him. Use every bit of help you can get, things are going to get worse for him, and you, from now on. If you haven't yet, get some emesis bags from Amazon and keep them on hand for the vomiting, life saver! You will get through this! I encourage you to cultivate relationships with people who you can confide in about your struggle through this. Even at the facility your husband is being treated at, they surely have counselors or psychologists that can help the caregivers too, maybe look into that.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: radiation and nausea issues [Re: ConnieT] #197061
08-30-2018 06:28 PM
08-30-2018 06:28 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
thank you Denise! I will check into those bags.

I have a strong network of friends who are stepping up to give me an outlet from the stress.

I hope my husband will realize all I do but right now, I'm totally invisible and he gives our daughter who has done 2 things for him all the credit of taking care of him. He's been emotionally/verbally abusive to me for years. This is going to be a hard journey for him. I have raised my kids and gotten along without him for 25 yrs now, he needs me. I don't need him. But I look at him as one of God's children and I will take care of him for this reason. Maybe...he will change. I'm not holding out for it but I will stand back and see what this horrible journey brings.


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] #197062
08-30-2018 07:58 PM
08-30-2018 07:58 PM
Joined: Jun 2013
Posts: 287
alabama
K
KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
alabama
If you can't get special bags, my personal illness kit was always a stack of grocery store bags (the recyclable kind), a roll of toilet paper (for wiping my mouth, etc), and a bottle or two of water (for getting rid of the taste). I had bad panic attacks prior to cancer (not so bad now), and got pretty sick on a regular basis, so I carried a kit like this in my car and stuff in my tote bag all the time. Usually had a place to dispose of stuff, so it wasn't going round trip with me ... I suppose some sort of scent-dampening bag would help ... but it helped a lot just to know I had stuff handy. Back then I'd say a mint for afterwards would help, but with OC, mints burn once radiation kicks in, so definitely not that ... maybe a Vitamin C drop or other hard candy to suck on, if he wants flavor and can handle something in his mouth.

That's my instant nausea kit, anyway. smile Hope you don't need one, but if you do, it's a quick and cheap way to make one.


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
Re: radiation and nausea issues [Re: ConnieT] #197063
08-30-2018 08:52 PM
08-30-2018 08:52 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
I'm learning to be prepared for the unexpected! one of the nurses got irritated with me for not having a back up driver when he had to stay for an IV and I was having to give up some of my notary business and rearrange my schedule. I wasn't complaining, just trying to get things taken care of. I wanted to say...hey, this cancer stuff might be a daily routine for you but it's not for me. I'm still learning.

I did go get him a small trash can, water and towels the other day on our way to treatment as he was nauseated. He didn't end up needing them but at least I have some supplies in the car now.

thanks ladies...you are all jewels smile


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] #197074
09-03-2018 05:35 PM
09-03-2018 05:35 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
question. husband gets 2nd chemo treatment tomorrow and 16 th radiation treatment. he is going to be hospitalized. He said the Ensure didn't stay down so well. I said, well, aren't you taking your anti nausea meds since you are going to be needing them anyway? No. they give me a drip before the chemo to help with nausea. ok. common sense tells me to take those nausea meds regularly since the nausea has never gone away this whole time. Fill me in please as I really do not know if he's still trying to be in control or if he is correct to stop taking the nausea meds while still struggling with nausea.


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] #197076
09-03-2018 06:07 PM
09-03-2018 06:07 PM
Joined: Oct 2012
Posts: 1,056
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,056
Toronto, Canada
Connie,

The patients are given anti-nausea meds as well as antihistamine prior to being given their chemo meds. I guess that’s why the first day of chemo is usually an okay day for patients. It’s when these meds wear off on the second day that the nausea and chills set in. Your husband should try to stay ahead of the curve using his anti-emetics. Once the vomiting starts, it’s much harder to control. I have been told that by every single nurse John had.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: radiation and nausea issues [Re: ConnieT] #197077
09-03-2018 06:48 PM
09-03-2018 06:48 PM
Joined: Jun 2013
Posts: 287
alabama
K
KristenS Online
Gold Member (200+ posts)
KristenS  Online
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 287
alabama
I'll say that the general rule for most patients is to TAKE those meds! Me, I tolerate nausea better than the meds (actually allergic to some of them, we found out, yippee), but I've had YEARS of nausea practice prior to cancer, so that helped, weirdly. For anyone else, I'd advocate taking the stupid meds and keeping ahead of the misery ... and I'm not generally a big advocate of meds, despite what my bedside table might tell you. smile I'd guess he's being stubborn / strong the way many men are when they get sick? but cancer offers plenty of bravery to go around, no need to suffer nausea too.


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
Re: radiation and nausea issues [Re: ConnieT] #197078
09-03-2018 07:44 PM
09-03-2018 07:44 PM
Joined: Aug 2018
Posts: 193
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 193
thanks for the responses! I'm certainly no expert and it's not me going through this but it just makes sense to not take the chance of going down the path that hasn't gone away yet and will accelerate after this chemo/radiation treatment. I guess he needs to learn each lesson the hard way. It's the way he's always been in life so I shouldn't expect anything different I suppose.


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.
Page 1 of 4 1 2 3 4

Moderated by  Brian Hill 

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,227
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
brkenintntionz, cove, Uniquepainter1, eee4, Marge Wisc
11931 Registered Users
Forum Statistics
Forums23
Topics17,404
Posts192,998
Members11,932
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1