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Re: Tongue Cancer- Problems Swallowing [Re: gmcraft] #199028
09-11-2019 07:10 PM
09-11-2019 07:10 PM
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Pam42 Offline OP
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Hi guys,

No problem Gloria. (Just now noticing your name at the bottom of the post smirk sorry....)

I also just noticed that, I probably need to update my signature. It looks like there are a few misunderstandings. I realize I rambled a lot in the first few posts especially, so, just to summarize, he has had a subtotal glossectomy so his main source of nutrition is the feeding tube and some days it is only the feeding tube. He has done pretty well swallowing liquids since his first week out of surgery which was around 6 weeks ago.

Today was the first day of chemo and his 4th radiation treatment. So far, his only complaint from that is dry mouth.

I was FINALLY able to ask the doctor about the swallow test today and he seemed to get really aggravated and/or defensive about me asking why he hasn't gotten one yet. Basically, he (the radiation doctor) doesn't think it's important right now after all that he has been through with the surgery and all.

Again, and maybe I'm getting ahead of myself, but, I was just thinking that BECAUSE of the surgery, it might help us to see what he is able to eat and drink right now and give us an idea of what he should and shouldn't try to swallow prior to and during radiation therapy, if that makes any sense. His doctor certainly acted like it didn't make any sense and acted like I was questioning his authority or something, which I wasn't, but anyway.... I guess he can just continue doing his swallowing exercises and drinking for now. I was just hoping to be able to blend him some foods if possible to keep his weight up during radiation and chemo treatments but he, personally doesn't want to do the swallow test or anything unless the doctor orders it so I'm going to leave it at that right now and try to hold on to what little is left of my sanity....

It looks like I have to go back and look at the other posts so I can remember what else I was trying to answer... lol


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: Crystal J] #199029
09-11-2019 07:13 PM
09-11-2019 07:13 PM
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Pam42 Offline OP
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Hi Crystal,

Was just told at the chemo appointment today that there will be a dietician there to speak with him about his case.

Maybe at the next chemo? Idk...

Thanks,

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: ChristineB] #199031
09-11-2019 07:25 PM
09-11-2019 07:25 PM
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Pam42 Offline OP
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Thanks again Christine,

I am going to update my signature because as I said in the earlier post to Gloria, I guess it there was some miscommunication as he is only able to get most of his nutrition and his medicines through the tube.

I wanted to follow your advice on the milkshakes and eating but that is why I thought the swallow test would be helpful (after surgery)

I felt like if he had the test prior to radiation, I would be able to get him to eat more but no luck with the doctor on agreeing with me on that. And if the doctor doesn't agree, he doesn't listen to me...

Even though he has been able to drink plenty and eat some blended soup, he only does it when he "wants" to. Oh, and we did have a home nurse but she doesn't come anymore as of last week, I believe.

I guess I'm going to ask this oncology dietician, who I just found out about today, about the protein supplements next week.

Edit: Oh, I just remembered, he may not get to talk to the dietitian. Every time someone talks about his nutrition then they'll say "oh nevermind you're on a peg tube, you should be fine."
It seems like I heard that about two or three times just today. And this may be where I'm being misunderstood or I may be misunderstanding something but I feel like he needs to get in more nutrition than just what he's getting through the tube but mainly I feel like they are forgetting about him using his swallowing muscles which I guess is my main concern.

Thanks again,

Pam


Last edited by Pam42; 09-11-2019 08:31 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] #199043
09-13-2019 02:56 AM
09-13-2019 02:56 AM
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Dizz_zzey Offline
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Dizz_zzey  Offline
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Hi Pam,

I've also had a subtotal glossectomy with a free flap reconstruction. I had around 85% of my tongue removed. I have a RIG, which I think you call a G-Tube (it's similar to a PEG, but is fitted under x-ray and has a balloon to keep it from coming out.) I've also had a lot of teeth removed too.

I have nutrition shakes but am able to swallow, so I have been trying soups, smoothies, yoghurts etc to give me variety.

I've just caught up on where you are with your husband.

Here in the UK, we don't have the swallow test until after radiotherapy and that's of the speech therapist thinks its required. It's because it puts more stress on the patient when they're trying to recover. It's a last resort thing. The speech and language team (SALT) teach patients how to swallow and talk, which will be the same for you.

The back flow into the tube is totally normal. I too had a little "oh my gosh" moment when I saw it, but I spoke to my nurse who said it's OK. Liquid will enter all avenues and this is just another avenue for it to go in.

I love that you're making smoothies and shakes for you husband. That's really helpful. I find there are some days where I'm just too tired, or my mouth is sore and I don't want to take things orally, so that's when I use my tube more (I currently use it for medication that I can't swallow and for a protein drink that tastes disgusting, so I'm happy to bypass my mouth on that one smile ) As your husband is going through radiatotherapy, he just might not be in the mental state to want to swallow nutrition. Yes he needs to keep up with his swallowing throughout the day, but even dry swallowing will help.

I've not started my radiotherapy and chemo yet, I get that joy next week. I have 33 radiotherapy sessions and 3 chemo ( 10 hours long, so overnight in hospital for each session) plus I'm having immunotherapy as I'm part of a clinical trial. These will all make me feel very tired, plus whatever other side effects I'm going to have.
I've told my husband that if I'm too tired to physically take nutrition orally, then he is allowed to take over and put my nutrition through my RIG. He must encourage me to sip water as it'll ease any sores in my mouth and also keep up with my swallow, but he shouldn't push it as I know I will get defensive.

So it might be worth chatting to your husband an dasking him if he's just too tired to take nutrition orally. If that's the case, ask him how you can help him.Things might have changed for him of what he wants and he just doesn't want to ask or burden you.

I hope this helps you and your husband.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Tongue Cancer- Problems Swallowing [Re: Dizz_zzey] #199065
09-14-2019 08:51 PM
09-14-2019 08:51 PM
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Pam42 Offline OP
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Hi Dizz,

Thanks so much. You and he are going through so much of the same thing. You are just a little behind him (on the timeframe) and you seem to have such a great attitude about everything just as he does. You guys are soldiers. All of you are. This has been so rough on me emotionally and I'm not even going through the hard part. But I have always been much more of an emotional person than he is, and although I have complained many times about him having the emotions of a rock, lol, in this case, it has been extremely helpful.

Thanks for explaining to me about the swallow test and the tube. It would have been helpful if the doctor would have been more helpful or thorough in explaining, or listening, actually. I just didn't like his attitude.

I had hoped to be able to get him to eat more and try different things like you are doing and his attitude about everything is to only do it if the doctor tells him to do it. And, don't get me wrong, I'm not trying to go against doctor's orders... He, honestly, is just a very stubborn man and always has been smirk and he doesn't ask questions when he goes to the doctor without me.

For instance, I tried to tell him that he needs to ask about fluoride trays because I had read so much about them on this site. But he went to the dentist twice without me and did not ask, and they did give him fluoride toothpaste, which he doesn't use as much as I believe he should, and, he actually still has a couple of teeth which needed fillings that he didn't get fixed. I'm worried about him on that but, at this point, I can only hope for the best.

He is doing his swallowing exercises and he is still drinking his shakes and smoothies so I will try to lay off on getting him to try eating other things and just continue to make them. I know he is going through so much already and that I get on his nerves when I push for more. I just want the best end result for him. smirk But, at a certain point, I know, I just have to let him do it his way.

I wanted to add protein to his nutribullets but don't want to begin without asking the dr. about it first and he pretty much ran off on me the other day in the middle of me asking about the swallow test so, I will send a note with my SO when he returns for his next dr. visit (since I'm,unfortunately not able to attend every appointment with him) and possibly find out what protein powders are allowed and which to avoid.

I believe you he have the same amount of radiation treatments and he was offered the 3 doses of cisplatin or 7 smaller doses. He chose to have 7 weekly treatments as he was concerned with the hearing loss side effects. But when we actually went for his chemo, they had changed it to Carboplatin for some reason and didn't even tell us. We didn't know until the nurses told us and they had no idea why it was changed. I'm curious but at the same time I'm glad that he won't have as many side effects. I'm a bit worried for you on those 3 big ones but least you will be able to stay in the hospital and rest and be looked after well. I looked at your latest update and hopefully I will get a chance to respond to it soon and will definitely check in to see how you are doing. Wishing the best for you!!


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] #199066
09-15-2019 02:51 AM
09-15-2019 02:51 AM
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Posts: 55
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Dizz_zzey Offline
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Hi Pam,

I have found the Dr's don't always tell you everything. I'm glad I'm on this site as I've been able to create a list of questions to take with me to appointments. My medical team are all used to me taking out my phone to get my list out.

I think you are doing a great job. It must be really hard for you when you want to give your husband the best chance and then he doesn't ask the questions that'll help him. You are amazing and so strong. Anyone who has a loved one going through cancer, who is being so supportive, are amazing people as it's not an easy journey either and it is easier for them to hide from it all.

I wonder if your husband's reluctance to try different foods, until the Dr says he can, is his comfort zone. He might have a fear of choking on something and isn't ready. I know that when my speech therapist said she was happy with my swallowing of water and then gave me a pot of custard and a spoon to try in front of her, I was terrified. I put teaspoon of custard in my mouth and didn't know what to do, my mind went blank. It was like performance anxiety grin I managed to swallow some, but had to clear my mouth out with water.
As I've got more confident around swallowing I've realised that I need strong flavours to help me swallow and enjoy the food. Vanilla custard is too bland for me, so adding other flavours such as orange blossom water, rose water, coffee etc have helped. So when your husband is ready to try then it might be useful for him.

With using the toothpaste, would he be up to rub a little bit around his teeth, rather than brushing his teeth. My dentist at the hospital said I need to use fluoride toothpaste twice a day, rinse and swallow the residue, and to make sure I drink plenty of tap water (in the UK we have fluoride in our tap water) to give my teeth the best chance. At the moment I'm struggling to clean my bottom front teeth due to the stitches in my bottom lip, but I can rub toothpaste there if I use my little finger to put the toothpaste on.

I'm being admitted for an overnight stay for my chemo, partly for the length of time it takes but they also want to keep me under observation. I have appointments booked with my team every Monday for 7 weeks and I can go and see them anytime throughout my rads treatment. I know it's going to be hard on my body, I'm also having immunotherapy - all 3 treatments cause fatigue so I feel my bed will be used quite a bit over the oncoming weeks.

Thank you for looking out for me, I will look out for your updates too.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Tongue Cancer- Problems Swallowing [Re: Pam42] #199067
09-15-2019 06:52 AM
09-15-2019 06:52 AM
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gmcraft Online
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Pam, I just thought I would mention that my husband was not using his fluoride trays while he was getting radiation because of the mouth sores. It was supported by the dentists at the hospital. However, after the radiation was over, he had to get back to them. So, maybe your husband still has a chance to get the trays later.


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: Dizz_zzey] #199068
09-15-2019 08:54 PM
09-15-2019 08:54 PM
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Pam42 Offline OP
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Hi Dizz,

Same here. I have always been really big on researching my own problems and yes I take my phone with me to his appointments and have notes galore in it, lol

Thank you. smile I'm trying... I have my days...

I think his reasoning is more of he just wants to get through this and then go back to eating steaks and burgers. lol Really though, we have talked about this. It was the same in the beginning, before the surgery while he was losing weight because his tongue was so swollen he had trouble eating, I tried forever to get him to let me make the nutribullets and try cooking softer foods for him. He kept trying to tell me that as soon as the surgery was over he could eat and gain back the weight. I kept telling him, It's not going to be that easy.... And finally just maybe a couple weeks before the surgery he agreed to try the nutribullets. This was AFTER he lost about 25 lbs. frown

So now, he knows that he has to keep the tube throughout the radiation treatments but I don't think he has accepted that it may be even longer than that and possibly, (but hopefully not, fingers crossed,) MUCH longer. frown I'm trying to prepare him for that, just in case and he says that if he hadn't lost all of his bottom teeth, he could eat. He "says" that his problem is that he can't chew food and that if he could chew it, he could swallow. (my reason for wanting the swallow test)

As for the toothpaste, I have made that very same suggestion. So far, he just isn't listening.. frown My birthday was this weekend and I have had an extremely emotional week. It's kinda funny, I can talk and argue and reason until I'm blue in the face and he will not listen or will argue with me but if he sees me cry, well, I don't think he knows how to handle that. So after seeing tears (I am certain that is what did it, lol) He promised me that he is going to start listening to me. lol

I'm not sure how long that will last but I reminded him today of his fluoride and his calorie intake and that he is supposed to start listening to me. He huffed and puffed a little but he said ok. smh So, we shall see :}

Well, I Said, It's kinda funny and I'm sort of laughing about it now, but it really isn't funny at all that I have to get pushed to that point to be able to get through to him. Smh… smirk

I did Not know that he is supposed to swallow the residue though. I'll tell him about that, I'm sure he'll be overly excited that he has a new thing to add to all the others. lol Seriously though, he is just a really simple man. He likes to keep things simple Finish one thing before beginning the next, etc. I know this is a lot for him. I really do hate it frown But again, I just want to prevent future problems for him, for us...

Oh, you said you have stitches in your bottom lip, I think, that since they removed ALL of his bottom teeth, that his tongue is now stitched to the floor of his mouth. He said it feels like it is. And he still doesn't have much movement with his tongue. Are you able to move yours yet or do you have any idea what to expect with that?

I have one more day off work this week so I may get a chance to reply again soon but yes please keep us posted with how you are doing. I will be able to read on breaks if nothing else.

Btw, his first week of treatments has gone pretty well. He has constant hiccups from one of his medicines and some dry mouth and sticky mucus but he says that is only if he has dairy products so I think we may have to drop the milkshake smirk or try making it a different way.

Best wishes,

Pam

Last edited by Pam42; 09-15-2019 09:07 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: gmcraft] #199069
09-15-2019 08:59 PM
09-15-2019 08:59 PM
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Posts: 20
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Pam42 Offline OP
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HI Gloria,

Thanks, I think that he could still get them if I can just talk him into going back to the dentist. frown But then getting him to actually use them may be a whole new battle. frown

Wish me luck. smirk


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] #199070
Yesterday at 06:33 AM
Yesterday at 06:33 AM
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Dizz_zzey Offline
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Hi Pam,

I'm so glad he's not having too many side effects so far. Would it be worth using a fruit juice in the smoothies instead of dairy? Although it might be too acidic for his mouth.

My flap is also sewn into the flow of my mouth and into my cheek. I am able to move the back of it which is good, apparently I'm not supposed to be able to but the sliver of tongue I have left is quite strong. This movement is helping my speech and I'm hoping to be able to move food a little bit.

I was told I would need the tube for around 6 months. Its not the end of the world but it does encourage me to push on with my swallowing, even doing some dry swallowing helps.

You are doing so well. I expect you do have you days. I hope you get some respite too. You need to look after yourself too.

I can imagine you in an appointment with your questions, it's exactly as I am smile

I'm in hospital for an overnight stay as its my first chemo & immunotherapy dose. Tomorrow morning I start radiotherapy.

Wish me luck 🤞


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
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