Bhavna and OV,
Apologize for coming in late on this. I haven't checked for a while. My situation is similar to OV';s except I was 67 when I had my first occurrence in 2003. I am so sorry you had to have this ordeal so young. Had a recurrence in February 2004 when they took nearly all my tongue and also had cancer under my chin. I had a feeding tube which I still have. I won't go into mu history but hopefully I can pass along some helpful tips.
1. Regarding radiation, see if you can tolerate amifostine (ethyol). This helps keep your salivary glands. I couldn't tolerate it myself.
2. Get your teeth checked before you start radiation. Once your H & N areas are radiated it is very dangerous to fill or pull teeth. I use an electric tooth brush and Biotene mouthwash 2 to 3 times a day to massage gums and keep teeth relatively healthy.
3. Watch out for infection after radiation. I got cellulitis in my neck and had to go on antibiotics. Ditto for the place where your feeding tube goes into your stomach.
4. During and after radiation, keep stretching your neck and jaw. Therapists can give exercises. There are exercises to help you swallow. I do these every day.
5. My therapist had me use a syringe once I could swallow. This helps because with no natural, moving tongue it is hard to get food to the back of the mouth to swallow and the syringe gets it to the back of the mouth. My taste is still OK and I use the syringe more and more and hope to give up the tube. I read about a person who had her ENTIRE tongue removed and was eating after 8 and 1/2 months when she had her feeding tube removed.
6. Get to a speech and swallowing therapist as soon as your ENT will permit you. Eventually you may need to see a gastrointestinal doctor to have your esophagus. This really helped me to swallow. This is key.
7. I saw a maxillofacial prosthodontist who fitted me with a palatal drop mouth prosthesis. I aids in speech and swallowing although I still use a while board a lot to communicate. You should inquire into this.
8. Don't be afraid to ask for pain meds. My skin still tightens up especially at night due to radiation and I use a small amount at bedtime to help me relax.
9. You have to take each day one at a time. It is a hard road but it can be done. You are wise to have found this site as there are a lot of helpful people who have had your condition.
10. Finally, don't be so hard on yourself. I too smoked for 25 years (quit in 1979) so I thought I was out of the woods for having cancer problems. I have already influenced a person to give up tobacco.
11. Stay close to the people you love. I found that going out among people is the best therapy.
Regarding tongue transplants, I did read about an Austrian man who had a successul tongue transplant in Vienna in July 2003 but can't find anything on the net or through Google about how he's doing now. You are young enough that with advances in medicine, it may be commonplace in the not so distant future. It should be available now in the US and Canada but I think tongue cancer is so relatively rare it doesn't get the attention other cancers do, therefore progress is slower. Also insurance issues may play a role but thatis just my personal thinking.
Right now is the most diffucult time for you. It eventually gets better. I hope I haven't rambled on too long but wanted to pass along some of my experiences. I wish you all the best in your recovery and don't hesitate to ask anything that you may have a question about.
Jim Haucke
------------------------------------------------ SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies
