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Re: radiation and nausea issues [Re: ConnieT] #197031
08-27-2018 02:57 AM
08-27-2018 02:57 AM
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ConnieT Online OP
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ConnieT  Online OP
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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
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ChristineB Offline

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*** 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
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Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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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: 1,083
Toronto, Canada
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gmcraft Online

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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
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Posts: 222
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ConnieT Online OP
Gold Member (200+ posts)
ConnieT  Online OP
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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: 317
alabama
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KristenS Offline
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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
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Posts: 222
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ConnieT Online OP
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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: 10,303
PA
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ChristineB Offline

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ChristineB  Offline

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Joined: Jun 2007
Posts: 10,303
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
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Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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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
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Posts: 10,303
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ChristineB Offline

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ChristineB  Offline

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Joined: Jun 2007
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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
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