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is this typical or not with trying to eat? #197660
12-03-2018 06:54 PM
12-03-2018 06:54 PM
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ConnieT Online OP
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ConnieT  Online OP
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husband finished up rad/chemo 2 months ago tomorrow. He is unable to swallow anything except water and keep it down. He just started using the feeding tube fairly regularly about 3 weeks ago...starvation for 2 months before that. He keeps trying to eat fast food so when he asked me to go get him some yesterday, I said no. I"m tired of wasting money on food you cannot eat. I said it's like this....(for the umpteenth time)...you have to start with soft food and work your way back to that steak. you cannot start with the steak for many reasons. So he made himself a plate of eggs. after all the coughing I hear immediately after that, I"m pretty sure it did not work for him

So today, after 4 months of rebellion on soft foods, he asked where some of the canned soups were that I bought for him 4 months ago in preparation for him to start eating again. He waited a few hours before he tried to eat. 1 tbsp and he couldn't keep it down. I have no idea if that's true or not or he just coughed up saliva as that's what I witnessed. He is taking all kinds of antacids for GERD. They even gave him something new to try.

Is this about not being able to swallow? or do you think he cannot eat because it's been months of not eating? or a combination of both? We see the ENT doc tomorrow. Scope a few weeks ago showed the tumor looked like it was shrunk pretty much completely. PET scan is Dec 18th. He is still bed ridden 24/7.


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: is this typical or not with trying to eat? [Re: ConnieT] #197661
12-03-2018 09:52 PM
12-03-2018 09:52 PM
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ChristineB Offline

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Hi Connie!

I had really hop[ed by now your husband would have made significant progress in his recovery. Like everything it all goes back to the "everybodys different" saying.

At 2 months post rads, most OC patients are able to start tasting some things again. It may be only the first bite or 2 or 3 that tastes like the patient thinks it should but then the taste gradually goes back to the burnt cardboard. Its not easy to understand whats going on with your husband and his ability to eat. Patients who use feeding tubes usually have a more difficult time returning to regular eating. I know he has had many struggles with his intake and lack of following directions. At his doctors appointment, ask the doc about a barium swallow test. That test will determine if he has the capability to safely swallow or if he's aspirating things he easts and drinks.

Many patients at 2 months post rads are beginning to return to their pre-cancer lifestyle. Some are returning to work ... but, so much depends on the career and how strenuous and stressful the job is. I was very fortunate to be able to return to work part time for a while before I needed to go back to the full time job. Being only pt, I was put on clerical duties which was much easier than my usual high pressure job. At 2 months post rads, your husband should be able to be more active and you should see marked improvements in his energy levels and stamina. He should be able to walk around the block, drive himself to appointments, take care of all of his daily grooming needs, go to the store to pick up prescriptions, etc.

A complete recovery takes 2 full years! I know it seems like a long time for a complete recovery but after about the first 6-8 months most patients are pretty much back to as close as they will get to their former pre-cancer lives. Remember, for every week of rads, its a month of recovery and rads is still working almost as much as when your husband first finished his treatments. Im sure you are able to notice some dramatic improvements in your husband but other areas he doesnt seem much better than the day he finished rads. This is all "normal" for a recovering patient.

Most OC survivors/patients get frustrated and become impatient in how their recovery is going. Nobody ever gets better as quickly as they think they should. Post rad patients can and do get annoyed at how long it takes to get better, especially when their improvements arent plainly seen. Being able to keep down a couple bites sounds like it would be a goal your husband tries for. If he has GERD that could be making a huge impact in his ability to eat just like the thick gunky mucous. Ask the doc about his GERD and how that affects your husbands recovery. After anywhere from 3-6 or 8 weeks post rads the thick ropey mucous that hits almost every OC patients after rads should just disappear one day and it will be replaced with the driest mouth he could ever imagine. Dry mouth plays a big part in a patients ability to swallow. Since you mentioned your husband still has the thick mucous, it really should be any day it disappears and the dry mouth phase begins. The dry mouth phase can stick around seemingly forever but its really only about a year or 2. During that phase, patients will find they must carry a water bottle with them everywhere they go. Throughout the day (and night) patients will need to take small sips to help alleviate the dry mouth. You may have read bits about the "water bottle carriers club" where it really is necessary to have water handy 24/7 or the dry mouth can become very uncomfortable. Survivors/patients will experience having their mouth become so dry their tongue actually sticks to the top of their mouth, making eating, drinking or even talking impossible. Luckily for most this is temporary and will gradually improve the further out from the end of rads.

Also ask about adding high protein whey powder to help speed healing. At this point your husband still must be taking in the minimum of 2500 calories and 48-64 oz of water every single day. If he is not doing the minimums he is only hurting himself and slowing his recovery down. Even 3000 or 3500 calories shouldnt be too much after what your husband has been thru. His body is burning up calories at an incredible rate just like when he was going thru rads so he MUST push himself to take in as many calories as possible. The increased calories should be a daily routine right up until at the very least he hits his first year post rads. If your husband is losing weight, thats a sign he isnt taking in enough calories and this must be changed or he will continue to make very slow to no real progress in his recovery. Its all about what he takes in and after all the issues he's had with his intake Im not surprised he isnt making progress as quickly as those similar patients who pushed themselves with their intake. I was horrible with my intake and it landed me in the hospital several times for malnutrition and dehydration. I was so worn out from improper intake that I could barely walk but around the 2 month post rads point I was still able to return PT to my former office job plus driving 45 minutes each way of the commute. I also would stop on my way home almost every day for a never ending bowl of won-ton soup which I greatly enjoyed as one of my first post rads meals. Not many calories but all that hot broth on chilly fall days felt good in my empty stomach. These things could be what is bothering your husband and keeping him in bed 24/7. Exhaustion happens quicker in patients who are dehydrated and malnourished all from not taking enough in. Seeing weight loss is what really sends up a red flag. That is a sure sign your husband is again doing things his own way which is making him suffer far more than he normally should be. Everything is an option, every single thing!!!! When your husband is doing things against what his doctor and nurses (and you) advise he is setting himself up for failure and continued suffering. Im sure your husband would love to go back to his regular lifestyle and job. Its completely up to him on how quickly this can happen.

Hope this helps!!! Good luck tomorrow with the check up, hopefully the doc has some good news and ideas about helping with your husbands recovery. Keep us posted!


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: is this typical or not with trying to eat? [Re: ConnieT] #197662
12-04-2018 06:26 AM
12-04-2018 06:26 AM
Joined: Oct 2012
Posts: 1,029
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Connie, I strongly support Christine’s suggestion that you request a barium swallow test.

My husband had the same grade of oropharyngeal cancer and the same amount of radiation. What happened In his case was that his esophagus became completely closed by scarring after treatment. The result was he could not even swallow a sip of water. It took us a while to clue in, although it might sound incredible. Whatever John attempted to swallow — it would initially appear to go down but a few hours later, he would throw it up again. I guess when he swallowed, the food appeared to have gone down, but it only went down as far as the blockage. Then, eventually, it got thrown up again. I remember that he was unable to eat even at 8 weeks post radiation. At about 12 weeks, he got his barium swallowing test. I was shown the video and it showed that even a sip of water would pool at the blockage and not go down. Even esophageal dilations would not have helped his case. (If you’re interested in what eventually happened, could I ask you to look up a response I made to Lisa F only two weeks ago.on this forum?)

You might want to discuss this with your doctors. I know it sometimes may sound as if the patient is recalcitrant, but it’s very hard to tell when throat pain during radiation treatment slowly morphs into a blocked esophagus. Your RO should be able to see the scarring during a scope, but the confirmation comes from he barium swallowing test.

I hope this is not the case with your husband as I have followed your journey as a caregiver and know you don’t really need any more complications. It may, however, explain his reluctance to eat anything.


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: is this typical or not with trying to eat? [Re: gmcraft] #197663
12-04-2018 07:16 AM
12-04-2018 07:16 AM
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Posts: 157
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ConnieT Online OP
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ConnieT  Online OP
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wow! thanks for the great information! I'm glad I asked last night so I would know to bring up the swallow test. I looked up the reviews on this ENT and she gets a 1 star from many people so it's good for me to come prepared.

Considering he was never in much pain (according to him as he barely took pain meds) and he never lost his taste ability, I was hoping he would bounce back quicker. The salvia is not nearly as thick as it had been, more like the phlegm people cough up from a cold I would say.

I will update as he is having a scope today I believe.


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: is this typical or not with trying to eat? [Re: ConnieT] #197664
12-04-2018 08:12 AM
12-04-2018 08:12 AM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
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KristenS  Offline
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alabama
I'm STILL a member of the water-bottle-carriers club ... except (shh!) I fill mine with Coca-cola. Nobody gives me a hard time ... it's pretty darn clear I need the calories, LOL, and with my teeth gone, what other harm is it gonna do? (It was also the only thing I could keep down while pregnant, and one of the few things that still tastes like it should, so it's my comfort beverage. Except for Coke Icees ... those are even better!) And I'm about four years out from treatment. (It's also handy because I have meds I have to take at weird times of the day, so having a drink helps ... I can NOT swallow pills anymore, anything bigger than a mini m&m or a sprinkle from a cupcake.) sorry ... rambling ...

I had the tube, and I was able to transfer back to regular (soft) food somewhere between end of treatment in March and removal of tube in June (if I recall correctly) ... but I'd practiced swallows a lot during treatment, and though I never did hit Christine's suggested calories (formula intolerance), I was doing better on nutrition than your husband was. It was a real emotional boost to get rid of that thing ... though until he really can keep food down, I wouldn't go there. The swallow test is a REALLY good idea. And something to keep an eye on from here on out ... we all get weird random choking spells, for years. I haven't had to do that yet (had a good therapist till this year when I had to take time off), but I can see it might be in my future later. And if for some reason you're not with him at that point, write it down on a list for him to work from, or make sure it's in the notes of his primary caregiver. That doesn't have to be your responsibility forever, okay?

((hugs)) ... always thinking of you!


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: is this typical or not with trying to eat? [Re: ConnieT] #197665
12-04-2018 11:03 AM
12-04-2018 11:03 AM
Joined: Jun 2007
Posts: 10,189
PA
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ChristineB Offline

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ChristineB  Offline

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Posts: 10,189
PA
Connie, your husband is the one and only OC survivor/patient who has not lost their ability to taste. Theres been roughly 7000 members join OCF after I have and Ive spoken to or emailed thousands of others over the years and never has anyone ever told me their sense of taste was kept. I definitely would have remembered them as no loss of taste is a rarity! Im used to hearing patients and their caregivers complaining about how horrible things taste and they're in a big rush to regain their sense of taste. Almost every person Ive spoken with over the phone or emailed has brought up their sense of taste as it is a huge problem for most OC patients who have no appetite but are still struggling to take in enough calories. Its NOT easy when every single sip or bite tastes like cardboard or worse. Maybe your husband really did have some loss of taste but it wasnt a complete loss? I dont know why but I could always taste yoo-hoo even though any other chocolate item tasted like it was over salty, burnt without any other flavor, not even a hint of chocolate. I used to drink ice cold yoo-hoo every day and it felt very soothing on my raw throat.

@Kristen, you also are sooooo super lucky... you can drink Coke!!! I used to LOVE ice cold Coke and would drink one or 2 almost every day before I got sick. When my sense of taste went during rads, I was never again able to tolerate drinking Coke or even Pepsi (YUCK!!!). The bubbles bothered my overly sensitive mouth, tongue and throat and it tasted horrible, almost acidy. I havent tried it for years so maybe I'll give it another try now that Im so far past all the treatments.

Waiting to see your update, Connie. I hope you ask his doc about his lack of progress. Its very possible he is depressed??? Thats a huge problem for many OC patients and their caregivers too. I dont know the latest numbers on this but Id guesstimate its about 50-75% of OC patients and caregivers need a little help to get them thru treatments and recovery phases. Meds to help stabilize patients moods are just another tool like a feeding tube to help make the horrendous treatments easier. Everyone is their own worst enemy! Just thinking about and/or taking anxiety type meds comes with a preconceived stigma, theres no shame in needing a little help. For most, the "helpers" are only needed on a temporary basis. Once the patient begins to feel better they usually dont continue taking the meds (usually anxiety meds) for any great length of time.

Hope the appointment was a productive one and your husband is making better progress than he appears to be making.


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: is this typical or not with trying to eat? [Re: ChristineB] #197666
12-04-2018 12:19 PM
12-04-2018 12:19 PM
Joined: Aug 2018
Posts: 157
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Posts: 157
oh my. the speech therapist was kind but blunt! She told him he has messed around with this too long and now he will be doing a swallow test with foods to see what is safe to swallow. He will be seeing this therapist once a week for accountability. She explained the therapies he was supposed to be doing all along. He tried to say no one told him it was important but you all know how much he has listened to medical staff through this process. She was very honest that he may not ever be able to eat again through his mouth and that these exercises are his full time job right now.

The doctor was not happy either as he is still dehydrated. He tried to argue he wasn't but she said it is visible in the scope and is the reason he is having so many difficulties.

Christine, he has taken anti depressants for decades.

I have asked about his sense of taste and he will say it's not 100% but he has never said anything tastes bad. Remember this is the guy who took virtually no pain medication through 3 chemos and 35 rad appts. His philsophy in life is : the rules don't apply to me. might explain why nothing has gone normal or as expected in this treatment.

His last rad appt was 2 months ago today. There are been virtually no change in him since then. The pain is the same, the sleeping or trying to sleep are the same. He rarely gets out of bed. He wants his truck/car keys back but i must protect the public as well as him. He either over reacts to change or doesn't know to react. It's just not wise for him to be driving.

thanks so much for the responses! I went in there armed with info (like to ask about the swallow test which they decided needed to be done) and knew what to ask. oh boy again. this is exhausting! They said he is way behind in recovery. You all knew that and know why, don't you?!

I might change my name due to so much personal info but the ones that matter will recognize my info!

Last edited by ConnieT; 12-04-2018 02:10 PM.

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: is this typical or not with trying to eat? [Re: ChristineB] #197667
12-04-2018 02:12 PM
12-04-2018 02:12 PM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
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KristenS  Offline
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alabama
Christine, I use a LOT of ice in my Coke, so that helps with the bubbles. Cokes in restaurants are a lot bubblier than the ones I drink at home, where I can sip them slowly and they can get melty ice and go flat and stuff like that. Yes, the over-carbonated ones can still burn a bit ... but it is still better than some of the other stuff I lost. Though all those Coke Your Way machines make them all taste like too much lemon has been added ... sigh ... but better than nothing. I hope there's some combination that works for you.

(I'd probably suffer it some anyway, because of the migraines ... the caffeine helps. I drink caffeine free most of the time, but during a migraine I need the caffeine and I don't drink tea or coffee. I know, what kind of American doesn't drink coffee? LOL.)


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: is this typical or not with trying to eat? [Re: ConnieT] #197668
12-04-2018 02:22 PM
12-04-2018 02:22 PM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 261
alabama
Connie, the anti-depressants may have lost their effectiveness for the time being. The body goes through so MANY changes during treatment, and the stress (even if he doesn't admit it) is sky-high ... so it would be perfectly normal to require a booster dose or extra medicine alongside his normal prescription for a time.

My body had the weirdest reactions. Of course, if there's a weird reaction, I *will* get it, LOL. The summer after my treatment was over, I went and broke my shoulder. My body decided that was the last straw and declared me allergic to anything and everything ... including many of my normal pain meds. It was crazy till we got it all sorted out, with the help of an allergist. That's when the spinach allergy ended up kicking in. I still laugh about that one (I mean spinach, seriously?), but it scared me half to death when it first happened because ... food allergies out of the blue? Yikes.

So even though he hasn't admitted to taste loss or pain, and I hope that's the real truth for him, there may be other changes in his system that he's not yet aware of. Certainly more depression because he IS limited in what he can do, and there's nothing but exercises that he can do about it, and even that may or may not work. He may behave like a jerk, but he has to be smart enough to read between the lines on that one ... and that's a hard blow to handle. It could have come to that even if he'd done everything right, but he knows he didn't, and he has to deal with it. It's scary.

I'm kind of rambling here (I do that a lot) but I hope some of it makes sense.


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: is this typical or not with trying to eat? [Re: KristenS] #197669
12-04-2018 03:34 PM
12-04-2018 03:34 PM
Joined: Aug 2018
Posts: 157
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ConnieT Online OP
Senior Member (100+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 157
haha it all made sense Kristen!

I never thought the anti depressants worked before treatment and I believe he stopped taking them during treatment. His demeanor is exactly how it was before treatment. In fact, I said this week that he might have been easier to deal with during the chemo and rads than being back to more normal!

He listened to this speech therapist today and I said to both of them, if he will listen to you and do what he is suppposed to, I will gladly drive 2 hours a week for treatment. I'm so beyond over the rebellion. Just want to get this swallow test done and over with before year end when we get to start meeting deductibles again and get this show on the road before it's too late for him to ever eat by mouth 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.

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