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Re: Tongue Cancer- Problems Swallowing [Re: gmcraft] #198980
09-05-2019 05:55 PM
09-05-2019 05:55 PM
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Pam42 Offline OP
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Thanks again gmcraft.
His radiation begins tomorrow and they still haven't given him a barium swallow test. I called last week only got to talk to a nurse and the only thing she could tell me is "the doctor hasn't ordered one." !!! Smh
I don't know what to do. I feel like we need to know what he is able to eat and what he should avoid. So far he's still only drinking milkshakes and NutriBullet. Not to mention, the number they gave us for the test is also for a speech therapist which I also feel he needs. Makes no sense.

Last edited by Pam42; 09-05-2019 05:58 PM.

Significant Other diagnosed in May: SCC Right Lateral Tongue. Surgery July 30, 2019: Subtotal Glossectomy. Removal of tissue from jaw and small part of jaw bone, All lower teeth and lymph nodes, on the right side. Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Plans to remove more teeth before radiation begins.
Radiation began 9/6/19 and chemo 9/11/19.

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #198984
09-06-2019 06:21 AM
09-06-2019 06:21 AM
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Hi Pam,

If he has a feeding tube, that’s how he will get his main nutrition and hydration for the time being. What he eats or drinks by mouth depends on what he can swallow at this point. The swallowing test is administered by a speech and language pathologist. I know it sounds weird but they are specialists in swallowing.

If the doctor hasn’t ordered it, it may mean he won’t get the swallowing test for now. I would discuss this with the doctor and ask if he can order a swallowing test, if not now, then some time in the future. My husband’s doctors wouldn’t consider this until maybe 10, 12 weeks after radiation finished. I’m in Canada and we have social medicine, so it meant one has to wait for ten weeks to get a swallowing test. Our nurse told me to ask to be put on a cancellation list and be prepared to go when we got the call. I followed her advice and John got his swallowing test in two weeks! Talk about learning to navigate the system.


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: Tongue Cancer- Problems Swallowing [Re: gmcraft] #199010
09-10-2019 06:09 PM
09-10-2019 06:09 PM
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Pam42 Offline OP
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Thanks again gmcraft,

Sorry it takes me so long to reply back. I can read all of the responses and look up info from the site on my phone but it is so hard for me to reply unless I have my laptop handy. Which, unfortunately, isn't often. frown

So, you said that the swallow test is administered by a speech and language pathologist and they are specialists in swallowing. Does that mean that they don't work with patients on speech as well?

I still haven't been able to see the doctor, myself but I am going with him to his first chemo appointment tomorrow and I am, or was under the impression that I would be able to see the radiation doc tomorrow but I'm not sure now but that's another story... Anyway, I'll find out tomorrow... smirk

Newest issue, I hope someone can help with this, and I may start a new post for it, as well but, we are on day 3 of radiation and I am trying to get him to take in as many calories as possible as I keep seeing suggested on this site but he hasn't even been drinking his Nutribullet lately because he thinks he must be full. The reason he thinks this isn't because he feels full. It's because the feeding tube is "holding" or possibly "backflowing" food and/or water in it, even long after he is finished with the meal.

He only began to notice this about a week ago. I'm not sure if it has always done this or not. I didn't notice until he told me a few days ago. Unfortunately I am only just now getting around to asking about it. frown

He's only getting around 2600 calories from his formula which isn't a lot for someone his height I don't think. And until he started noticing this backflow or whatever it is, he was getting all of those calories plus drinking his nutribullets and milkshakes. Now, he's only getting those 2600 calories and his water because he's afraid it's going to spill out.

We flush it before and after every meal. And we're not having any trouble getting the formula or the water to go in. But after it all goes in, there is some just sitting there in the tube when he is finished. Is that normal?

We also have tried all of the methods we know of just in case it is an issue of clogging including using the soda so I'm not sure if it is a clogging issue or if he really is full????

Oh, and if anyone has any advice on things he should do before his first chemo treatment that also would be great, as I don't get to go to all of his appointments and from what he tells me, they didn't get any list of instructions or paper work about what he should do or not do before chemo. smirk

Thanks again,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue. Surgery July 30, 2019: Subtotal Glossectomy. Removal of tissue from jaw and small part of jaw bone, All lower teeth and lymph nodes, on the right side. Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Plans to remove more teeth before radiation begins.
Radiation began 9/6/19 and chemo 9/11/19.

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199013
09-10-2019 07:02 PM
09-10-2019 07:02 PM
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Posts: 10,364
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ChristineB Offline
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The feeding tube frequently will have residual formula or a little of whatever has been put into it. This does NOT mean there is any problem. It also does NOT mean he shouldnt put anything else into it! If he doesnt like seeing this, I suggest flushing more often with 2 of the 60ml syringes of luke warm water. Flushing after feedings is very important to ensure the feeding tube remains free of any leftover formula. This also helps to meet his daily water requirements.

We have a great many here who have varying experiences with feeding tubes. Too often, patients get their feeding tube then are pretty much left to figure it out for themselves. After a very brief explanation someone who is completely unfamiliar with the ins and outs of feeding tubes isnt able to absorb so much feeding tube info in such a short amount of time. If you havent asked yet, check with his doc or nurses if theres any at home visiting nurses for patients who are new to using feeding tubes. Ive had visiting nurses a few times and they were all so nice, absolutely wonderful experiences with very kind and helpful nurses who took the time to teach me everything they could about feeding tubes.

Hope this helps!!!

PS... Barium swallow tests usually arent done on patients who are just going into treatments. Its more of an after rads/surgery type of test. At least thats what Ive always seen here in the US.



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: Tongue Cancer- Problems Swallowing [Re: ChristineB] #199015
09-10-2019 07:57 PM
09-10-2019 07:57 PM
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Pam42 Offline OP
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Thanks so much for the quick reply Christine!

I read it to him. Hopefully he will listen to you and try to raise his calories.


Significant Other diagnosed in May: SCC Right Lateral Tongue. Surgery July 30, 2019: Subtotal Glossectomy. Removal of tissue from jaw and small part of jaw bone, All lower teeth and lymph nodes, on the right side. Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Plans to remove more teeth before radiation begins.
Radiation began 9/6/19 and chemo 9/11/19.

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199016
09-11-2019 05:15 AM
09-11-2019 05:15 AM
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Toronto, Canada
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gmcraft Online
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Christine has already responded to your question about the feeding tube, so I would just like to mention that the patient indeed gets full after a feeding. I used to try and force John to take more water or even a cup of tea in between feedings and he complained and said,”Do you realize I’m full.” Because they’re taking their nutrition in liquid form, we may not think of feedings as filling, but they are. John’s RO did not recommend, in fact her discouraged me from blending food and putting it in the tube. His point was that the stomach cannot “taste” food and there is a risk of clogging the tube when we put in blended food. I mention this because you talk about the Nutribullet. Talk to a dietitian or his doctor about the amount of calories he’s consuming and if, necessary, they can switch him to a high calorie Ensure/Boost or whatever.


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: Tongue Cancer- Problems Swallowing [Re: gmcraft] #199018
09-11-2019 07:34 AM
09-11-2019 07:34 AM
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Pam42 Offline OP
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I've never put his nutribullet in the feeding tube. He is able to drink it. The only thing we put in the tube is water and formula.
We also have boost for him to drink. He doesn't "feel" full.

The current issue is his concern with the feeding tube holding formula.

Thanks


Significant Other diagnosed in May: SCC Right Lateral Tongue. Surgery July 30, 2019: Subtotal Glossectomy. Removal of tissue from jaw and small part of jaw bone, All lower teeth and lymph nodes, on the right side. Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Plans to remove more teeth before radiation begins.
Radiation began 9/6/19 and chemo 9/11/19.

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199019
09-11-2019 07:40 AM
09-11-2019 07:40 AM
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Posts: 1,118
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gmcraft Online
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Sorry, I misunderstood your point.


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: Tongue Cancer- Problems Swallowing [Re: Pam42] #199020
09-11-2019 07:53 AM
09-11-2019 07:53 AM
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Crystal J Offline
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Do you not have an Oncology Dietician, with whom you can ask questions about his particular case & concerns??

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199023
09-11-2019 10:06 AM
09-11-2019 10:06 AM
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ChristineB Offline
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If your husband is able to drink shakes then by all means have him drink as much as he can. The same for eating. Swallowing is a function that is surprisingly quick to have problems with when its not used on a regular basis. Every single day he should be swallowing as much as possible thru out the day and evenings, whenever he is awake. People who only drink frequently do not get the feeling of being full how people usually feel after eating a big meal. Its not easy to feel full when only drinking, at least with my experiences I dont think so. When a patient/survivor is unable to eat normally, they often feel hungry all the time. If your husband can eat then he should be encouraged to eat as much as he wants as unfortunately there probably will come a time during his radiation treatments he is unable to eat, swallowing is painful, food/drinks arent tasting like they should all adding up to become very challenging for many patients causing major issues with their intake. Right now the more calories and water, the better!!! Even having a ridiculously high 5000 calorie daily intake wouldnt be too much for someone going thru rads/chem. Your husbands body is burning up calories at an increased rate trying to fight the cancer, rebuild its damage while also counteracting the treatments damage as well. Sounds like you are doing a GREAT job with being a caregiver!!!! Your husband going into rads/chemo as strong as possible even if having a few extra pounds is a very good game plan!!!

Im very glad to hear you are already using his feeding tube for the formula to help your husband get balanced nutrition. There may come a time when the feeding tube is all he can do for all his intake. By that time you will be a pro with handling the feeding tube!!! I may have missed you mentioning this but if you havent already done so, the feeding tube is an excellent way to take medications. Just use caution with crushing medicines, some can NOT be crushed like time release medicines (even over the counter time release meds). I suggest asking the pharmacist before trying dissolving any pills with water for taking it thru the feeding tube. The doc can write prescriptions for liquid form if you or your husband ask. Liquid meds are so much easier going thru the tube than struggling to get down a big horse pill. Use caution when or if you decide to try blending real foods to put thru the tube!!! Feeding tubes are designed to work with prescription formulas, not real foods which can negatively impact the longevity of the tube, causing it to breakdown or clog. Plus the calorie and nutritional content is almost impossible to track which could in the end counteract your husbands treatments. Any number of things we take for granted could cause issues with rads/chemo, even a simple vitamin could interfere. Thats why its so important to have open communication with the entire medical team so everyone always is on the same page working together for the common goal of eliminating the cancer.

Your husbands feeding tube is there to help ensure his intake remains high enough to keep his weight stable, keeping him strong thru the progressively more difficult rads/chemo treatments. The further he goes with treatments, the more he will notice changes and side effects. Im pretty sure I previously mentioned to be on alert for any differences in kidney functions and his hearing as those are the start of permanent health problems and need to be brought to the attention of his medical team on his next treatment day. The doctor must be made aware of any issues he is having to ensure they are taken into consideration before any further treatments are given.

Bets 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
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