Tongue continuing to be very swollen after Feb 2012 partial glossectomy and follow up radiation/chem

Jbwa5

Hi everyone...I am writing to hopefully find some answers and/or support that I can bring back to my Dad. After deciding on a partial glossectomy (late Feb) to treat his tongue cancer (2 prior smaller sugeries, a first round of radiation and a chemo-like treatment kept it at bay for less than a year the last time), my father began a twice a day radiation/once a day chemo treatment for 5 days on, 7 days off (first week of April, 5 weeks post op). He concludes his last week tomorrow. His tongue was extremely swollen (almost 1/2 or more out of his mouth significantly after 2 weeks post opt) and although it reduced to where he could almost fit in in his mouth (around Easter time), it has slowly begun to swell again. He is getting very discouraged, and this week of "rest" has been his worst. Besides a marked increase in secreations (he has a temporary trach), he said that whenever he does try to move his tongue, it feels as if his teeth are biting into his tongue. He had some sort of teeth guard about 3 weeks post op, but they did not stay in. I think between reading positive outcomes and consulting with the team prior to the surgery, he was expecting more progress at this point (about 2 and a half months out). He has a G Tube and with the trach is not able to talk yet (he uses his IPAD which has a voice activated app), however he was eager to begin speech and swallowing therapy (not sure if this typically begins to occur when rad/chem is complete) and is feeling as if his tongue will NEVER go down...Any advice or any comforting words would so be appreciated...I love my dad and it has felt powerless being able to help him and my mom so little...I appreciate all of the posts in the past...they are so encouraging to read and hope that there might be readers out there whose swelling was also slow to reduce (but did eventually) or those who might have an idea as to why he continues to have minimal healing. Oh, he is also at what I think is the probably the most renowned cancer treatment center in their state...They drive from 3 hrs away and stay at an American Cancer Society supported house that has been incredibly wonderful.

longtermsurvivor

bear with me
If I understood the chronology, your dad had a partial glossectomy in February, and is being radiated right now, nearing completion of his rads. I also understood that this is the second time he has been radiated. If that is his situation, then he is nearing the worst of the radiation side effects, as the are cumulative , and tend to maximize right after radiation ends,

He clearly has lymphedema involving the tongue, and I am sure that must be miserable. But it isnt very treatable, and it will likely take a long time to subside. Make sure he sleeps sitting up, or at least partially so, as this edema is worse after being recumbent for awhile.

I have a history somewhat similar to your dad. I finished my second rads at the end of February. Toward the end of treatment I had enough tongue swelling that I could not talk, and was silent for about two months, including the first month or so after rads ended. Now things are rapidly improving. I am able to talk clearly and without pain. All of us want improvement quickly. Unfortunately that doesnt happen. Your fathers treatments include twice a day rads. That schedule tends to be worse for these side effects than the once a day schedule.

Welcome to the board. Hope this helps in some way. Btw, there is a man here who posts as rarph. He is 77 years old and went through a number of months of misery surrounding his radiation last year. Rarph didnt post for a few months, but came back to the board two weeks ago to tell everyone how much bettet he was doing. Tell your dad he will need to be very patient.

Ingrid K

longtermsurvivor said:

bear with me
If I understood the chronology, your dad had a partial glossectomy in February, and is being radiated right now, nearing completion of his rads. I also understood that this is the second time he has been radiated. If that is his situation, then he is nearing the worst of the radiation side effects, as the are cumulative , and tend to maximize right after radiation ends,

He clearly has lymphedema involving the tongue, and I am sure that must be miserable. But it isnt very treatable, and it will likely take a long time to subside. Make sure he sleeps sitting up, or at least partially so, as this edema is worse after being recumbent for awhile.

I have a history somewhat similar to your dad. I finished my second rads at the end of February. Toward the end of treatment I had enough tongue swelling that I could not talk, and was silent for about two months, including the first month or so after rads ended. Now things are rapidly improving. I am able to talk clearly and without pain. All of us want improvement quickly. Unfortunately that doesnt happen. Your fathers treatments include twice a day rads. That schedule tends to be worse for these side effects than the once a day schedule.

Welcome to the board. Hope this helps in some way. Btw, there is a man here who posts as rarph. He is 77 years old and went through a number of months of misery surrounding his radiation last year. Rarph didnt post for a few months, but came back to the board two weeks ago to tell everyone how much bettet he was doing. Tell your dad he will need to be very patient.

he's doing great, all things considered
Jbw5: I had my partial glossectomy 15 months ago and finished rads one year ago. It sound like your dad is doing fine, such a short time out from treatment. He has been to battle with a monster and it will take time for his body to heal. I lost 75% of my tongue which was replaced with a hunk of tissue from my forearm (forearm freeflap). I was in pain for a good 6 months after my radiation treatments and I only had them once/day. I know it is hard, but it will just take more time. It is very hard to be patient, but this is a long recovery... very common. The swelling will cause pain so take the advice and try to have him sleep propped up with pillows. I slept in a recliner for almost 2 months, so that I was never laying all the way down. Good Luck to you all.

Jbwa5

Ingrid K said:

he's doing great, all things considered
Jbw5: I had my partial glossectomy 15 months ago and finished rads one year ago. It sound like your dad is doing fine, such a short time out from treatment. He has been to battle with a monster and it will take time for his body to heal. I lost 75% of my tongue which was replaced with a hunk of tissue from my forearm (forearm freeflap). I was in pain for a good 6 months after my radiation treatments and I only had them once/day. I know it is hard, but it will just take more time. It is very hard to be patient, but this is a long recovery... very common. The swelling will cause pain so take the advice and try to have him sleep propped up with pillows. I slept in a recliner for almost 2 months, so that I was never laying all the way down. Good Luck to you all.

Thank you so much for the
Thank you so much for the initial comments...it helps to hear your stories and helps me to feel like I can better help my Dad...I am very grateful to know that you have had similar experiences and are healing.

dimasbarak

Tongue Cancer

Hi, I know is been almost 3 years ago but I am very interested in what happened to your dad. Did he improved? 

The reason I am asking is because i had a tongue surgery and reconstruction with what Dr calls the flap (piece of tissue from my leg) This was on Dec/23/2014 and a month later my tongue still swollen.

They want to start Radiation/Chemo therapy in about a week or two but I am very concerned about me not being able to survive it.

Would you talk to me about any experiences you may have that may help me please.

Thank you very much

 

dimasbarak

Ingrid K said:

he's doing great, all things considered
Jbw5: I had my partial glossectomy 15 months ago and finished rads one year ago. It sound like your dad is doing fine, such a short time out from treatment. He has been to battle with a monster and it will take time for his body to heal. I lost 75% of my tongue which was replaced with a hunk of tissue from my forearm (forearm freeflap). I was in pain for a good 6 months after my radiation treatments and I only had them once/day. I know it is hard, but it will just take more time. It is very hard to be patient, but this is a long recovery... very common. The swelling will cause pain so take the advice and try to have him sleep propped up with pillows. I slept in a recliner for almost 2 months, so that I was never laying all the way down. Good Luck to you all.

Tongue Cancer Surgery

Ingrid very nice to meet you,

about a month ago i had 40% of my tongue removed and reconstructd with a piece of tissue from my leg, and  I also had 6 lymph nodes remove from the right side of my neck. I am about to start the radiation treatment but I am panicking because of all the side effects this involved. 

My first fear right now is that I can not tolerate laying flat on my back because salive and flegms build up right away in my throat and I start chocking

If you are still alive would you talk to me please. I need to talk with somebody that knows how it feels to go through a situation like this.

Thanks Ingrid

lornal

dimasbarak said:

Tongue Cancer

Hi, I know is been almost 3 years ago but I am very interested in what happened to your dad. Did he improved? 

The reason I am asking is because i had a tongue surgery and reconstruction with what Dr calls the flap (piece of tissue from my leg) This was on Dec/23/2014 and a month later my tongue still swollen.

They want to start Radiation/Chemo therapy in about a week or two but I am very concerned about me not being able to survive it.

Would you talk to me about any experiences you may have that may help me please.

Thank you very much

 

Old post

This is an old post.  go back to the Head & Neck discussion board, and add a new post.  There is a link near the top to do that.

There are some folks out there that had tongue surgery in the last year or so.  I'm sure they will chime in.

Lorna 2007 (tonsil) & 2014 (larynx)