| Joined: Sep 2008 Posts: 12 Member | Member Joined: Sep 2008 Posts: 12 | Hi- I had the same forearm-flap surgery succesful in the first attempt 9 years ago. I ate sour cream, yogurt and they disconnected the peg before I left the hospital. The tongue can be later lasered to remove hair. He is fortunate to have this surgery to restore speech, eating everything etc. Only it is now a two-tone tongue! I recently had a couple growths along the flap line which were nothing. Good luck. | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Jingle,
Welcome to the OCF, sorry that you had to be here but this place is wealth of information and will help you and your husband get through this disease.
Now coming to your questions:
1. The first surgery that your husband had is called Partial glossectomy where they would have removed part of the cancerous tongue. If Neck nodes are affected, the docs would also perform Selective Neck Dissection.
This is usually followed by reconstruction of the tongue. In my father's case (left lateral tongue cancer), they folded the remaining right tongue and attached it back to left. The tongue was shortned but functions were retained. In your husband's case since that was not possible, so to retain functionality, they used the Neck muscle which unfortunately failed. To stop the tongue bleeding they had to cauterize his tongue.
The second surgery (or third) was the second reconstruction using tissue from his forearm (Forearm Free Flap reconstruction).
2. Once feeding tube is removed, you can gradually start with semi-solids. I have not seen any complication in case of my father. Your husband would need to gain some weight to be able to progress with next phase (Concurrent Chemo-radiotherapy) of treatment.
3. I am not aware of any hairy tongue but it may be possible and curable.
Take good care of your husband. As a caregiver, everyday would be a new challenge for you.
All the best. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 99 | Hi Jingle Bell My husband had half his tongue replaced with a flap from his arm last Oct.7th. He too had hair on his new tongue which "fell out" during the radiation process and has not regrown, he also does not have to shave in the area radiated which he is happy about as it is pretty scared up with his past surgeries. He does still have his peg, and in his case it has taken therapy to convince him he can safely eat, it still is hard work for him to do so and for him it was just easier, quicker to use the peg for food. (He asked the Dr. to put in a peg because he hated the nose tube.) Looking back, I realize depression played a huge part in his refusing to even try to eat food for many months after treatment, he never tried eating before starting rads/chemo. As his life spirled out of his control, eating was something he could make a decision about the therapist explained to me. To his day he wants his peg to stay in in-case the cancer returns and he needs it again, it is like a lifeline to him. So as you can see from the posts every patient handles this major change in their lives differently. I have gotten a lot of information and support from this site this past year - your in a good place for help as you need it.
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Well as everybody is saying everybody heals and handles it all differently. Ron still has the NG in now after his 2nd bout and surgery and another graft off his left thigh now. His surgery was June 30th. He failed his first swallow study 3 weeks ago, which when he had his first surgery he passed that one, this one is harder because of the radiation he had with the first bout. He is harder to heal because of it.He also had issues eating because of the radiation. It causes burns and sores in and on the mouth some folks I guess worse than others, but the feeding tube helps keep up with the nutrition IF they will eat. That is the big IF. Some folks understand they need to eat to heal and some folks you just can't get them to realize it is for the best and are "hard headed" you can say. Ron was able to eat Stouffer's Mac and Cheese and any pasta soaked in a creamy sauce because the red sauces burnt his mouth and he had an issue with salt/acid food. He loved jello(this was all before his 2nd bout) Alot of creamy foods just watch out for spicy and salty. And if he will do it baby food is great. He will just have to try out things to see if he can get them down. Trial and error. Good luck!
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Oh and about the hair, I don't think Ron's is there anymore either probably from the radiation. But yes you will see the whiteness of the flap when he speaks. Ron speaks fine except an issue a bit with L's but everybody he talks to can understand him. And he uses Biotene or store brand similar to for mouthwash and keeping his mouth moist. Everybody here will help you for what to expect and any suggestions in feedings and healing.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | Hello there...sorry you have to be here...but glad you found it.
I have never heard of anyone having the "hairy tongue" issue. The area they take the wrist skin from is generally least hairy area. I had my surgery April of 2010, and have yet to have any hair show up on my new tongue.
The neck tissue is new to me. I have only ever heard of the wrist flap or cheek tissue being used, and then a piece of skin from the thigh used to reconstruct the wrist area.
I had half of mine removed and a neck dissection, and then had 30 rounds of radiation, but was deemed "too depressed" for the chemo that i needed, (that made me very mad at the medical oncologist that decided that. What did she expect, I was 25, in nursing school and had to withdraw 6 weeks before the end of the semester and was being told I had a 50% chance of living to see 30 years old. Was I supposed to be dancing a jig? lol)
When I came off the NG tube the first time, I got an infection in my neck dissection area, and was put back on the ng tube a week after it was removed due to the infection. After the second time, when they removed it, I was on everything thickened to baby food consistency just as a precautionary thing.
Usually they will try to do a swallow test with an xray and whatnot or at least test you out in their office before sending you home with free reign. If they do just send you home with free reign and no advise as to where to start, I would start with thicker stuff, almost baby food consistency for food, and like nectar thick liquid, so still liquidy, but still thick enough to help prevent choking. One of the things I did at first was take yogurt and thin it out with some milk and drank that, or mix some protein powder into milk which thickened it up a bit. Most pharmacys should be able to get thickit(or another thickening powder) that you can add to beverages to thicken them. It's usually tasteless and can be added to anything(at the nursing home I worked at, we even added it to pop and coffee and no problems).
Hope everything goes well for you both. If you have any issues during radiation...just get on here and type away, and we will do our best to help. If you would like, you can talk with me too, as I went through almost same exact treatment, except no chemo.
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | |
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