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Hello!
I found this blog about a week or so ago, after my husband completed 35 rads and 3 cisplatin for Stage IV Tonsil Cancer. The treatment as most of you know was hell but he made it through without a PEG. He completed treatment on January 10, 2018, and today he is approximately 8 weeks post treatment. He is still surviving on nutrition drinks only (Boost Plus, 360 calories, 6 a day). He was a little overweight when he started, and lost about 30 pound. Today he is weighing about 204 lbs., and he 's 6'2". Not a bad weight but, of course, he's lost a lot of muscle so it's by no means a "healthy" weight loss. My husband is a tough man so he went cold turkey off of the pain meds (Hydrocodone 10 mg only) about 2 weeks after treatment. He hates the constipation, and he's done with the pain meds. The problem is he said it's still too painful to eat any thing thicker than a nutrition drink, and even those burn he says. I'm getting worried and he's getting down about the whole slow progress. Of course, taste is a problem (although he can taste some things which I think is a miracle), dry mouth is a problem and he still has the terrible, debilitating mucous! My question is should he be further along in recovery or is this about par for the course? Thanks for sharing your experience.

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Welcome to OCF! Im sorry to read about what your husband has been thru. As his caregiver you have been thru heck too!

Isnt the thick gunky mucous just horrible? Unfortunately we've all gone thru that too. It should be getting to be less than when it first started to bother your husband. I would definitely talk to his doc about it. To me it sounds like he is experiencing a pretty normal recovery phase. His doctor may have some tips or ideas of how to help get your husband make more progress. What Ive seen most patients go thru is from 4 to 8 weeks (even up to 10 or 12 weeks for some) of the thick gunky mucous then it seems to magically go away and then the dry mouth becomes a big issue.

Your husband is not alone with becoming upset by a lack of substantial progress. None of us can ever recover as quickly as we think we should. Depression is very common among oral cancer (OC) patients, many caregivers are affected as well. Many OC patients and caregivers take anxiety meds and talk with therapists to help them manage their way thru their cancer experience. Your husband has been thru alot and it will take time to bounce back. Just always remember everyone is different and will respond in their own unique way. My doc said one month recovery for every week of rads is what most patients go thru. For a complete recovery it takes patients 2 full years. During that time they will continue to see improvements here and there in their sense of taste and dry mouth. The mucous is normally not a problem after the first few weeks/months of recovery. Some patients have reported a few months after their 2 year post rads mark to see improvements in saliva and sense of taste. In time his mouth will not burn so much. Milk helps to neutralize any burning mouth issues.

If he hasnt tried magic mouthwash yet I suggest asking his doc about it. There are several varieties but all will do the same thing, numb his mouth long enough to eat. The magic mouthwash I had consisted of lidocaine, malox and benedryl. Magic mouthwash should be swished around in the mouth for at least 30 seconds then spit out. Also drinking lots of water 48-64 oz daily will help to thin the mucous. It also should help with constipation.

One thing that seems to be related is when pain is not properly managed, patients have more recovery problems. Pain meds also cause constipation in most people. Its pretty much a vicious cycle where its not easy to get past pain meds and get his digestion back on track. Its a challenge especially when the patient is drinking the formulas, stomach upset, diarrhea, nausea can be issues. His sense of taste will gradually return. Its just like anything in his post cancer recovery, its slow progress with ups and downs and a few setbacks thrown in too. Heres a list of easy to eat foods. This list was created for anyone who needs help thinking of foods that they may try to get back to eating more regular foods. Most foods are a bit bland without much texture but thats what works best for recovering OC patients. One food I found one of the easiest was canned sliced peaches. Definitely avoid rice!!! I kept trying it every once in a while when I thought I was doing better than I really was with my recovery. Rice sticks and made me choke even if its loaded with butter and gravy, it still isnt something I can eat. Adding high protein whey powder may help with your husbands healing but check with his doctor first. Also ask the doc about if taking a multivitamin will help. Centrum makes an adult liquid vitamin thats very good, Ive used it for months and it helps me to feel better.

Hope this helps, best wishes!


List of Easy to Eat Foods








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
Joined: Feb 2018
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Christine,

Thank you for your reply. Just reading your oral cancer history tells me you are a very tough, brave woman! I appreciate your words of encouragement. I know this journey is like a roller coaster ride. When I think about how much my husband has been through, and how well he is really doing compared to many, I'm very thankful. Some days bring a new challenge, like the below the chin, swelling in the neck that he is experiencing now. There are so many bodily functions that just happen automatically that we all take for granted, like saliva, swallowing, and taste. I'm praying all of these functions return for my husband. As a caregiver, it's hard not to be able to do more. All I can do is make sure he has everything he needs at his finger tips. I read as much as I can and we try different products (like Closys mouthwash, Biotene products, Xylimelt tabs which he did not like, and the list goes on. What cancer patients / survivors really need is a high calorie nutrition drink that doesn't derive most of it's calories from sugar! If anyone knows of a product, please let me know. But right now, the goal is to get my husband eating real food. He seems to be at an impass on trying. I have to help him get over this hump! Until then, I continue to pray for him and for all of you everyday! Thank you for taking the time to reply. Bless you!

Joined: Jun 2007
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Patient Advocate (old timer, 2000 posts)

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Biotene changed its formula a while back and removed all the things that were helpful to OC patients, at this time its a waste of $$$ and even worse now it could be harmful. See the thread below for more info and other helpful products...

Biotene changed thread


Im in a bit of a rush right now and will write more later. Hang in there, sounds to me like you both are doing very well.


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
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
I was my husband’s caregiver and I agree with you totally that one tries and tries but there is only so much one can do. Have you tried poached eggs? I’m sure it’s on Christine’s list of Easy-to-Eat Food. It worked really well for John. The problem that I found was while we would like them to be able to eat “real” food, it’s really hard to reach the daily calorie count just on that alone, otherwise the patient will have to be eating all the time — which doesn’t work and is the problem in the first place. You can try putting ice cream in the supplement to improve the taste and make sure there is some variety. Do you have access to a dietitian at your hospital? They often have good ideas to share. Having a Vitamix blender also helps as you can blend food so that your hubby can swallow it more easily. If you ever add milk to whatever he’s drinking, e.g. tea and coffee (do not underestimate the comfort a good cup of tea can bring, as I found out), use cream instead. Any little thing that you can add to what he puts in his mouth will help with the calorie-intake.

When John was prescribed painkillers, he also got a prescription for Senakot and a stool softener. That kept the constipation problem at bay. It also enable him to take the painkillers while he needed them. You might want to talk to your doctors about it.

I know how frustrating it is for the recovering patient. It is like they have lost most of their abilities all of a sudden because of the treatments. John really enjoyed Jello before he got sick, so I thought I would give him a treat by making him some. It turned out tasting all metallic and he felt it was a cruel joke.


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.

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