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#199169 10-01-2019 07:25 PM
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EileenL Offline OP
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My husband was diagnosed with stage 3 squamous cell carcinoma at the base of his tongue in March. On May 7, doctors at University of Pennsylvania performed a near total glossectomy with a total neck dissection removing all the lymph nodes in his neck, part of the pharynx and one tonsil. Thankfully, his lymph nodes were all clear but there is perineural invasion and what the docs called a focal point on the roof of his mouth. Bob was in the hospital for 10 days and then came home with a trach - that is some scary stuff! But it's amazing what you learn to deal with when you have to. Six weeks after surgery, he started six weeks of radiation and had chemo once a week (cisplatin). The last two weeks of radiation were so difficult for him and he did end up in the hospital once with a neutropenic fever but thankfully he made it through. I am still amazed at how long the radiation side effects last. Bob compared it to putting a piece of meat in the microwave and how they always tell you to let it stand for 2 minutes when it's done cooking. His oncologist laughed out loud at the analogy. He can make jokes about it once in a while but I know that inside he's still hurting and scared. He has lymphadema in his neck which makes sleeping difficult which makes him cranky. He's started therapy for that but it's slow going and sometimes I can almost hear his frustration. But I think the thing he's really having a hard time with is eating. He's not been allowed anything by mouth since the surgery until last week when he was given the okay for sipping clear liquids. Almost five months without eating. I would have lost my mind four months ago! He's been seeing a wonderful speech therapist and has definitely made progress but I worry that he won't make enough progress and the PEG will become permanent. I know that was not anything he ever thought was possible and he misses eating along with the social side of things. Our lives have changed so much but I am so thankful he is still here. We have three children who are all grown and independent and I thought now would be when we could really start having fun. I know a lot of people have to deal with these issues and much worse but sometimes, like tonight, I feel a little sorry for myself. I'm sure tomorrow will be a better day.

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The PEG is a lifesaver.... take things a day at a time!!! Any questions ask....

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So much of what you have written resonates with me. My husband has had a peg since mid-July and we are still waiting for radiation effects to dissipate so he can swallow once again. It’s hard to watch your loved one go thru this and we also miss being able to have a meal together and enjoy family gatherings around food. Hang in there — we look for bright spots as they come.


Spouse of patient 7 weeks post radiation as of 9/30/19
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EileenL Offline OP
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Thanks so much!

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I went on a trip with my PEG tube (during treatment, yeah, kind of stupid, but it kept me sane) ... it was weird, but it worked. I just took breaks when I needed, and sat apart to fill 'er up ... then just chatted with others on lunch break. (It was a woodcarver's retreat, so kind of a different setting.) I can eat more foods now, though without teeth (haven't got my dentures working yet, been a year on that) ... that's been hard socially and calorically. I'm a Scout leader, and I need my food. Plus everyone always wants to eat, and ... it's hard to go places where I can find something that is safe for a post-cancer mouth (even just the spices, never mind the textures).

But you learn to make allowances, and hopefully those around you will too. Yeah, I cry about it too. A lot. People ask stupid questions. My husband keeps thinking it will get better. (Since we are several years out, my taste buds are where they are ... that's not gonna change. The teeth, that might get better.) So he's gotta learn not to push. But overall, folks are getting used to making accommodations ... and I am learning how to advocate so I am not so uncomfortable.


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
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Posts: 27
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EileenL Offline OP
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That was some great info, Kristen. Can I ask how long it was before you were really able to eat anything after treatment. Bob is only eight weeks out and I try to tell him he has to be patient. His body is still healing and the muscles have to relearn how to work, right? Since he still has the PEG tube, the calories aren't an issue but I think the social side of it is really getting to him.

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It's hard to remember for sure (memory really does flake out on you) but I had the tube installed in January and it was removed in June of my treatment year, so it was perhaps shorter than some. I did work up through the liquids and soft foods, and it did take time. I didn't fully lose my swallow function, but I couldn't actually eat anything (I was still able to sip some water though, and that helped) ... it takes longer if you have to build that back up. I do still have issues with reflux and random bits of choking; I think most of us here do. (There are plenty of people who get past that, but they aren't the ones who stay and hang out on forums like this ... don't let our stats scare you, because this is a biased group!) I lost less during surgery than some folks though (and while I am typing, it isn't letting me see your first post, so I can't go back and see how I compare to what your husband went through ... the more invasive, the longer it will take to heal, of course ... more to build back up, more to get used to).

It is worth the effort to keep trying, though. It does help. There are no guarantees on how MUCH it will help, but it does help. My therapist helped some with speech, some with swallowing, and some with breaking up the scar tissue to ease my neck ... that last was worth it right there, and I wish I could still go to her ... I can do some of what she did at home, but not as good as she did! Anyway, it is good to keep on keeping on. Healing is a pain in the butt, but worth it.


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
Joined: Jul 2012
Posts: 3,267
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Posts: 3,267
EileenL,

Congratulations on your husband completing treatment as well as yourself for doing so much for him to get there!! That was a lot that your husbands been through, and unfortionatly, it’s the gift that keeps on giving!

There are some things that may help!

Sleeping on an incline such as an incline bed or devise designed for it.

My lymphdemia was so bad that I slept in a recliner chair

Darn phone needs charging


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #199252 10-15-2019 04:23 AM
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EileenL Offline OP
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Thanks so much for the info and the pep talks! Paul, you are so right about the gift that keeps on giving. Wish I could return this gift! The lymphadema therapy is really going well and Bob seems to be a bit more comfortable these days. I think his sleeping issues might be more related to anxiety. Just my opinion. His three month scans are approaching and we're both pretty nervous about that. But on the bright side, Bob ate some applesauce at the speech therapist's last week and is now allowed to practice at home with applesauce. They gave him a glossectomy spoon which is a pretty cool little contraption and that seemed to really help. Small victories!

Joined: Aug 2018
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your story sounds like the same one as my husband's but he is a year out from all treatments. He went through a lot of swallowing issues because he didn't see the need to do the exercises he had been given before treatment even started. The speech pathologist told him it might be too late to get swallowing reflex back but I will tell you that she scared him enough to follow thru with the exercises and now, there isn't anything he cannot eat or swallow. The lymphodema is gone after using some kind of machine? I never saw it so I have no idea what it looked like. Even most of the coughing has died down and while he carries a pop with him most of the time, I think it's mostly because he wants one to drink, not because he needs it.

There is light at the end of the tunnel, it's just a slow moving tunnel. Best wishes

ETA mine did not have any surgery. just radiation and chemo.

Last edited by ConnieT; 10-15-2019 08:11 AM.

Spouse of 58 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
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