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Tongue Cancer-update

joolivermesplay
Posts: 21
Joined: Oct 2008

In Oct I wrote that my husband was going to have surgery for removal of tongue ,and have a tongue flap.
He was in the hospital 48 days after that surgery ,which turned into a nightmare , he was overfed thru peg tube and got Pneumonia, then the tongue flap on the right side and the incisions all became infected , so another surgery had to be done .He also had 30 Hyper Baric Oxygen treatments.
He got out of hospital on Dec.08/08 and went back for another Tongue Flap on Dec.16/08 , he is now in recovery , and finally moving forwards.He will get 10 more Hyper Baric Oxygen Treatments starting today to help him heal., Thanks , Jo

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congrats to your hub, Jo, for his success! I note that this post and your previous have not been responded to prior to now, and I think that is because this particular board does not get so much traffic.

Your husband's cancer and treatment are discussed by many folks in the Head and Neck Cancer discussion board, just for future reference. I would not have discovered this one, in fact, if not for a CSN angel named Zahalene who wrote me an email saying, basically, "Hey, dude, get over to the Long Term Survivor board and check on this."

I am a head/neck survivor myself, Jo. I had half of my tongue replaced with muscle and nerves from my left arm in a 15 hour operation. I was left in an induced coma for four days, spent my time in the hospital, and then did 33 radiation treatments along with a number of absolutely nauseating chemotherapy treatments.

But I did not have the issues your husband went through. I salute him for his toughness and resilience! And I salute you for the obvious care and love you provide him! They are essential to long term recovery.

You probably know that with this type of cancer, barring metastisis, the chances for a complete recovery are outstanding. Hub will have some issues with eating, of course, but in time he will conquer those, as he has conquered these other foes along the way.

Now, in addition to toughness and resilience, he must add patience to his repetoire. Especially early on, it can be a frustrating journey. But it does get better!

Again, my congratulations to your husband for his survivorship, and my thanks to you for being there for him: he is luckier than he may know to have you there.

In the future, if you have questions or issues you would like to address, I would suggest that you post to the Head and Neck Cancer discussion board, where you can receive sound advice from many, some of whom have had experiences very similar to your husband's. You can also email me here if you would like to address some issue with me personally, although I really recommend the value of the expertise of those additional voices in the discussion board.

I have a page here along with a blog, too, Jo, that you and your hub might find interesting, if you have a couple of years of free-time for reading :).

You might also consider posting to the Caregivers board for issues regarding your own well-being during these trying times. I have this advice for all caregivers (and I have been very fortunate in the support I have received): to be a good caregiver, you have to take good care of the giver! Do not forget yourself through all of this.

Please accept my best wishes for a successful journey and a wonderful 2009. I look forward to hearing more about your and your husband's successes!

Take care,

Joe

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

the above-mentioned 'angel'. LOL What a hoot that soccerfreaks is.
Seriously, though, I am thrilled that your hubby is making progress.
I sincerely hope 2009 holds nothing but healing and love and laughter for the both of you.
It occurred me that one or both of you might like to join us in the chat room here at csn. You won't find any kinder, more understanding people anywhere. And we are good for a few belly laughs too! It is just sooo nice to talk to others who really 'get it' even if their cancer experience is different in the details from yours and your hubby's. And it is one of the best ways I know of to take good care of yourself, which is, as soccerfreaks mentioned a very important part of this whole process.
God bless, hope to see you there!
Zahalene

joolivermesplay
Posts: 21
Joined: Oct 2008

Thanks for your reply.Hub is still improving.thanks, jo

marinarv
Posts: 5
Joined: Jan 2009

HI, MY NAME IS MARINA,I HAD A TONGUE FLAP DONE BACK IN SEPT 25 2008.I WAS IN HOSPITAL 32 DAYS.I STILL HAVE MY TRACH IN NOW.I AS JUST WONDERING CAN YOU MOVE YOUR TONGUE AND EAT?I STILL CAN'T MOVE MY TONGUE.I AM ALSO TAKING CHEMO.LIKE TO HEAR FROM YOU THANKS.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Marina, I was diagnosed in very early September, 2005. My trache was removed WHILE I was in the hospital (first by me, a couple of times by 'accident' :)), and then by the docs, permanently. Re the tongue moving, I was able to move it to some degree almost immediately, but obtained a physical therapist after leaving the hospital, and she did wonders with exercises to help me not only move my tongue (extend it outside of my mouth and also be able to reach the roof of my mouth and roll it back) but also to increase the amount I could open my mouth.

Now, three years later, I can eat, Marina, but it didn't happen over night, and I still have a feed tube (JPEG tube), which I will allow to fall out without replacement the next time it does so.

If you are not a very patient person, Marina, you must learn to be now. I do not advocate going at a slow pace, not by any means. I cannot remember the number of times I made my main caregiver angry (my wife is a nurse) by trying to do things earlier than what others might have expected.

But, I do know now that it is better for us if we do not make unrealistic demands upon ourselves.

Obviously, 32 days in the hospital means you had some things going on! I do not exactly what your 'things' were, but any time you stay for 32 days, there is some serious stuff happening.
If I am not mistaken, you have not even been out of the hospital for much more than three months, AND are receiving chemotherapy.

Give yourself some time, Marina. And see if your insurance will cover a physical therapist (speech therapists are useful, and I had one of those too, but the PT really helped the most with movement and muscle stretching).

It DOES get better.

Good luck!

Take care,

Joe

marinarv
Posts: 5
Joined: Jan 2009

Hi,Joe
THANKS FOR YOUR RESPONSE.FIRST OF ALL I HAD TONGUE CANCER BACK IN 1997 JUST A PART OF MY TONGUE WAS REMOVED, AND MY RECOVERY WAS NO TIME AT ALL ABOUT FOUR MONTHS I WAS BACK TO MYSELF AND EATING.THIS TIME IT CAME BACK I HAD HALF MY TONGUE REMOVED AND A FLAP DONE,ALSO CUT FROM MY MOUTH TO MY ONE SIDE OF MY NECK.I HAVE NO IDEA WHEN MY TRACHE WILL BE REMOVED I ALSO HAVE A FEEDING TUBE.
MY LONG STAY IN THE HOSPITAL WAS BECAUSE I HAD AN INFECTION IN MY THROAT AREA,SO DOCTORS HAD TO DRAIN OUT THAT THEN,IT TOOK ABOUT THREE WEEKS UNTIL WAS UNDER CONTROL.
MY TONGUE WON'T COME OUT AT ALL.AFTER THREE MONTHS I STILL CAN'T MOVE IT ONLY THE BACK PART.ALL THE DOCTOR TOLD ME WAS "YOU DON'T NEED THE FRONT PART OF YOUR TONGUE TO SWALLOW" SO I DON'T NOW.
WHAT IT TOOK YOU THREE YEARS BEFORE YOU COULD EAT?? I AM THE NO PATIENT TYPE.
THANKS FOR EMAILING ME BACK.WHERE ARE YOU FROM? I AM FROM NEWFOUNDLAND, CANADA.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Marinarv, I am in Va Beach, Va, in the USA.

It certainly did not take me three years to eat! I still have the tube to supplement what I do eat, probably out of laziness at this point, more than anything else. Almost immediately I was able to drink liquids, including water, which they told me, by the way, might be one of the hardest, for some reason), and could eat things like popsicles, ice cream, broths, and yogurt. Eventually I could eat most brittle things, like chips and pretzels and crackers, things that you chew with your incisors - largely because it was difficult to get my tongue and my molars to get on the same page about moving food around :).

I still can't eat some things, steak being the one that comes most immediately to mind, and am still working on it, and it is true that I have to eat in small bites, due to some scar tissuing from surg and rads that left some swelling in throat that is apparently going to be permanent, but it's all good.

Good luck and best wishes!

Take care,

Joe

joolivermesplay
Posts: 21
Joined: Oct 2008

Hi Joe,
nice name you have there .lol.I am just today seeing these postings , I was beginning to think that no one else was going thur this cancer .
I just posted a letter to Marina on this site , I will check out the discussion board you spoke of .
My hub is doing quite well , he is healing great and has completed 10 more Hyper Baric Oxygen treatments , he is still sleeping in the recliner, refuses a hosp. bed , but is able to recline a lot more now. They tell us now in order to swallow he will need another surgery , which will involve taking a graft from his back shoulder area , don't know what he will do yet on that .
I have been researching some on options and there is Dr's at Siteman Cancer Center, Barnes Jewish Hospital at Washingon U. in Saint Louis, Missouri who have had real good results with tongue reconstructions , using a folding technique developed by a Dr. Hughley, it provides the shape,size, and mobility of the tongue, tissue is taken from forearm or thigh , before any decisions are made we will see if he is a candidate for that , sounds better than the other one I mentioned , the other would provide only a mound of muscle at the back of the throat to act like the back part of a tongue , if I am understanding right ..I have found out one theng "Sometimes you think you fully understand and then things are not at all what you thought you understood in the beginning ". Thank You , Jo

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Jo, I had the surgery you are referring to, at Sentara Norfolk General, in Norfolk, Virginia. They took muscle, tissue AND nerves from my left forearm (also a skin graft from left thigh, just in case) and replaced half of my tongue, the cancerous side, of course, with this. It works for the most part. Surprisingly, over time, due to the chemical activity in the mouth, it eventually takes on the texture of the original tongue, although mine still hasn't learned all of the 'tricks' of the original :).

If this is an option, I recommend it highly. When I say that I can't eat normally and that I still have my tube, I am saying that I can't eat CERTAIN things; steak comes immediately to mind for some reason :). But I can drink any beverage, and the only real problem I have is that a combination of the surgery and the radiation (33 treatments) left some swelling that may never go away. At this stage, it is probably safe to say that it will not.

However, the surgery took approximately 15 hours and I was kept in an induced coma for the following four days. Your husband may not be interested in pursuing that. Since he is rid of the cancer, the most important issue is behind him!

In any event, I have a page and a blog on this very site, if you are interested in reading a bit about my own history with cancer. It IS rather long, I warn you in advance.

Best wishes to you and your husband.

Take care,

Joe

marinarv
Posts: 5
Joined: Jan 2009

HI I TOO HAD A FLAP GONE ON SEPT.25 2008.I WAS IN HOSPTIAL FOR 32 DAYS.I JUST WANTED TO ASK YOU CAN YOU MOVE YOUR TONGUE? I STILL CAN'T MOVE MINE.AND CAN YOU EAT ANYTHING YET? HOPE YOU ARE DOING GOOD THANKS.

joolivermesplay
Posts: 21
Joined: Oct 2008

Hi, thanks for your reply . My husband at this time cannot swallow or feel or move
the flap . I think you will have to learn patience and talk to your dr. about when you can expect the results you want , which we all want for ourselves or a cancer survivor is to be back to normal.
Keep in mind that my hub's surgery was removal of the whole tongue , not just part of it , so I don't want to frighten you with my story .
We all want to know of improvements that will be in front of us and we want them like yesterday , but not all news from dr's are good, we wanted to know when he would be able to swallow and drink some water, we were told he would need another 8 hour extensive surgery where the muscle in the back would be used to build something like the back of the tongue so he could be trained to swallow , my hub is going to be 73 in April,I do not know at this time if he will opt for it or not , he is not discussing it with me, I do know that nothing has turned out like the dr's told us it would, he should have been able to take sips of water within three wks they said after surgery, barring complications this may have happened. After the incision and muscle flap would not heal , which the reason for that was the previous 35 radiation he had in 2004-2005 , that was the reason for the 30 Hyper Baric Oxygen treatments , which did help him to heal ., His last surgery to replace the flap they had to remove because of infection was Dec 16, 2008 and he was home on the 19th , since then he has had 10 more Hyper Baric , and is healing very well .
He still has the trach , and there is no talk of removal , I think he is looking at at least 1 year to heal his body and spirits before he could attempt another surgery , we together at that time will do what is best for his physical and mental health.
I can tell you that without the steps he has took he would have died ,the cancer was Squamous Cell Carcinoma and was spreading very fast , they tell us now that there is no other cancer cells around the margins of the areas that were removed .So they got it all.
He is still on this earth , and enjoys seeing our family , he has smiles for them now , and he enjoys seeing the birds and wildlife that frequent our back yard and our pets ,his little best friend his dog Molly, and our stray cat Miss Kitty .I am so thankful to God to have him here with me to see the beautiful sunshine on a cold frosty morning , and to feel his arms arond me as I have for the last 35 years.We live in Hornsby, Tennessee and love every minute of our life., Thank You so much , be patient turn your healing to God he will take care of you ., Jo

marinarv
Posts: 5
Joined: Jan 2009

hi joe
you have been on my mind, and in my prayers, i do hope you are feeling better.
i am dealing with my patience.the worst i find is the trache it digs into my throat.
i take sips of water but i do find it hard,my mom tries to get me to do it four to five times a day but it is some hard,i might manage two thats it.
i got to go for another chemo treatment tomorrow.
well,jo take care and sure hope you are feeling better, and i know its hard to feel good when you got this. you are in my prayes

marina

joolivermesplay
Posts: 21
Joined: Oct 2008

Marina , don't you have any of the trach drain sponges ? Put one of them under the bottom of the trach so it does not dig as bad ,if you don't have one of those then use gauze, if you have a collar you can also loosen it some. If it is stiched ask them about removing the stitches and putting a collar on . Jo M.

joolivermesplay
Posts: 21
Joined: Oct 2008

Marina,I hope you are feeling a little better . The only thing about Chemo and radiation treatments is that they will be over, hang in there girl you can do this , I know you are sooooooooo sick of it all , my husband did 30 treatments of radiation and then decided he would not do any more , I persuaded him to talk to his dr which he did , the Dr told him you need all of them to kill the cancer cells , he then went ahead and did them , he was so very sick, sometimes you think the cure is worse than the disease. It is a fight that can be won ,listen to your mother, she is probably going by what the dr orders . ,Hang on , Jo M.

marinarv
Posts: 5
Joined: Jan 2009

Hi,Joe
how are you feeling now? i had another chemo treatment yesterday, and must say i don't have any side affects from them, only just my neck and my head is a little tender,i still got my enegry and can cook for my husband and son.
the only thing is that i don't like the trache, and i don't have any of them trache covers joe was telling me about.
yes you are sure right the recovery is the hardest.well sorry got to run now, got to go to the hospital and get my needle for to keep my white blood cells up, so joe take care prayers going your way.
Marina

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