Head and Neck Cancer

[venus20]

Hi I just had surgery recently in August this year and I have been getting radiation and Chemo treatments for my cancer. I was wondering if anyone has had this experience as it has been very difficult for me. I live alone and I haven't spoken to anyone yet who has had this experience even though I have had alot of support from my family and friends, they can't relate to the way I am feeling. I don't usually chat with anyone online, but I thought I might try it now. I'm hoping someone can relate with me on this.

[jsax]

So how are you feeling? My dad has started tx for his head and neck cancer (mainly in the area of his tonsil). He has had to have teeth pulled and has started chemo. He starts radiation soon. I believe that he is struggling with mild depression and just feels bad in general. He is not able to have surgery until they shrink the tumor.

I am one of those family member who can relate to what you are going through but I want to know so I can help my dad and know what to expect. thanks in advance for any advice.

[venus20]

Hi, thank you for responding to my post. I am feeling alot better now that I have completed my treatments of Radiation and Chemo. While I was taking the treatments I lost a lot of weight, I felt tired most of time and I was very weak. It would be good if you get green tea for your father, that will help him keep his strength and it is high in antitoxiants. He needs to drink that everyday while he can swallow. I have been on a feeding tube also as when I came out of the hospital I was unable to swallow and my Radiation Therapist told me not to take it out because when I start my Radiation treatments I would need it the most as I would not be able to eat again. I am able to eat soft foods now and I will gradually be able to eat harder foods. I plan to get the tube taken out by next month as I will be hopefully returning to work the following month. I have been holding up pretty well mostly with prayers,the will to live and to overcome this illness. I was lucky that I haven't lost any teeth yet. I hope I don't, but tell your father to make sure that he brushes three times a day. I was given a flouride tray from the dentist. I don't know if you father has one but it does help to protect the teeth a little. Also I am using what they call Therabite. My doctor recommended that I get it to prevent me from getting lock jaw. Your father will need that also. If he doesn't have it or know about it tell him to ask his doctor. Also if you go to the website [moderator note: website address has been removed] of the mouth and throat you will get a lot of of answers there. If you need more advice feel free to ask me. I will say a few prayers for your father. Take care

[jsax]

thanks for the advice! I was like you I didn't know anyone that has gone through this. I work in the medical field, I have seen all types of cancer but nothing like this. Dad's is a T4?, 5 cm and is also in the tongue muscle. He is scheduled to have a peg tube placed next week, he is getting the fluoride trays for the remaining teeth before radiation starts and I will get him to ask about the Therabite. He had to have so many teeth pulled due to the strength of radiation. He also has caps\fillings on some teeth and others were just weak.

Here goes my questions?

So, how bad is the surgery? I have heard horrid stories and my dad is totally against is right now. I not sure of why, maybe the fear of the unknown and having to have someone take care of him. Were you able to take care of your own feeding tube? How long have you been out of work? The doctors are telling him 6 months or longer. Is this a reasonable time frame?

It's good to hear that there is light at the end of this tunnel and a success story. Thanks again for the advice,prayers and your time to answer my questions. Good luck with going back to work.

[venus20]

Hi jsax,

Well the surgery was difficult to overcome, but if your father has a strong will and if he is determined to get well; he will get better sooner than he thinks. The doctors will tell him that he must get out of bed at least the second day he is out of the recovery room. I had tubes all over me. I had a tube in my nose, the antibiotics, the ivy to give me liquids so I didn't dehydrate, and they gave me injections in my legs to make sure that my blood didn't clot. I stayed in the hospital a little over two weeks. I will be out of work 6 months because that's how long it took me due to the radiation and the chemo treatments. I was able to eat and chew food before I took the treatments, but now I'm back to eat only soft foods, so it's like starting over again. That's good that he will be getting the peg because he will need to use it. They will show him in the hospital and he will be getting a visiting nurse sent to him from the first day he is out of the hospital to make sure that he learns how to use. It is easy use. He has to make sure that he cleans it everyday and he will not be able to shower for the first week while he is in the hospital. The nurse will tell him if he asks her what he has to do before he showers at home. He will not be able to take a bath while he has the peg. He will need assistance with somethings. My daughter came to my house to clean, take out the garbage, check my mail etc.
He will start to feel stronger in about two weeks after he is out of the hospital. My surgery was a major surgery so I imagine his will be too. He'll need a lot of your support so be ready. Feel free to ask me any other questions you may have as time goes by. Have a Healthy and safe New Year.

[kinghb]

I had tonsil cancer. I had surgery, chemo and radiation. I would be happy to talk with you if you like.

[jsax]

So how bad was yours. My dad is on his 2nd chemo tx and his 2nd or 3rd week of radiation. They have what I call a chemo cocktail they have given him this week and went from convential raditaion to more advance radiation(I forget the tech name for it). So he is feel like crap to say the least. If you read above he is not able to have surgery because it so advanced in size(t4). It is still localized which is a blessing. We take any advice to make these next few weeks any better.

[venus20]

Hi,
The most you could for him is be there for him. Give him all the support you can because he will need it. Talk to him, give him advice even if he doesn't want to hear it. Tell him that you love him. Try to make it easier for him during this time. It will not get better for him especially because he has not had the surgery yet. He will need to eat as much as possible because he will lose a lot of weight. When he has the surgery he will lose a lot more. Tell him to take vitamins. CQ10 is a very good vitamin. It is good for the heart, lungs and the immunity system. I will say some prayers for him.

Good Luck,

[venus20]

Hi,

Thank you for taking the time to answer my post. I have been doing much better since I have completed my Radiation and Chemo treatments. I was unable to eat until a little over two weeks ago. I had my feeding tube removed two days ago. Can you tell me if you still release mucous? I still release some especially in the morning. For some reason also some of my food seems to go to my nostrils and I have to go rinse my mouth to be able to get it out. Does or did that happen to you? I am eating soft pureed foods now as I can't eat solid foods yet. My mouth is constantly dry especially in the morning and at night. Do you have the same problem? Please respond as soon as you have time.

Sincerely,
Venus20

[kinghb]

Hi, my name is Heidi. I had my surgery in June (tonsils removed and radical neck dissection) andI finished my chemo / radiation on September 12, so it has been 4 months. Yes, my mouth is still very dry. I had a feeding tube also, had it removed mid-October but still relied heavily on Ensure - but now I can eat lots more - in fact I had Indian food for lunch today!

Actually the worst part of it during the treatments was the mucus. But that went away, it just took a long time, probably a couple of months. Then in October I was hit with major depression and anxiety - doctors compare it to post -traumatic stress disorder. I was really whacked out mentally for a while, and couldn't eat again. Do you have an appetite at all? I didn't and they gave me this hormone called Megestrol to stimulate my appetitie so I wouldn't lose any more weight. And boy it works! Once I started eating again, everything turned around. I started sleeping better, the depression went away, and I just felt generally better.

So my cancer was in my right tonsil, and the way we found it was a had a lump on the right side of my neck that turned out to be a cancerous lymph node. They staged it at 4. But I was lucky and my doctors think they were able to get it all out surgically. The chemo / radiation still had to be done, though. And it was a long rough road, I know... but I'm telling you it does get better it just takes a long time. I have been using Biotene products (toothpaste, mouthwash) and a gel that you spray in your mouth to keep it moist. It's been working pretty good. Also my radiation oncologist prescribed Salegen for me and I take it an hour or so before I eat, that helps too (Salegen stimulates production of saliva). I'm hoping that in a couple more months it gets even better than it is now, because it still is very uncomfortable, especially at night. I do still cough up a bunch of stuff in the morning.

Does that help?