Hi Jen,   I had my feeding tube ripped out 4 weeks after treatment ended. Either they removed or I would. Was sick of it.   Like you I dropped a tonne of weight. Went from almost 100 kilos prior to treatment now down to 72 kilos.   I do not eat as before prior to treatment and do not think I ever will. My main meals are stews, Protien  drinks, scrambled eggs, pasta with sauce, spaghetti bolognaise. I can eat meat pies and some pizza if I put my mind to it but followed by a lot of water to swollow it.   steak,chicken is out just to dry to eat and takes months to chew. Veggies can do but with lots of butter or gravy.  My taste has somehwat returned however I don't think it will get any better than it is now. I still have almost no saliva and doubt it will return or if it does it will never be like before.   Try soups and stews, scrambled eggs, veggies with lots of gravy or butter and protien drinks. You can have bread if soaked in soups. toasted sandwiches take ages to chew. Hamburgers, the buns are to dry, the meat to spicy and takes awhile to chew so i give up. lol   This is my new normal and to be honest I don't much like it however I'm alive.   Wish you all the best,  and try eating the foods I mentioned and see how you go. Chocolate still tatses terrible for me so I avoid it. Mashed spuds to are easy to eat. Probably not healthy but edible.     ... View more

Hi Shane,   Sorry to hear Mate about you journey. keeping my fingers crossed for you and hope all goes well and wishing the best possible outcome.   I had my second Pet Scan today and wont know results until September 11 when I see the Oncologist again.   Last Pet Scan I had showed a small area on  right side of neck that they seemed to think was infamation from Radiation therapy. Will know soon enough I guess whether it was infamatoion or something else.   All the best.   Maurie ... View more

Hi Stace, My diagnoses was T-0 N2 M-0 meaning they couldn't find the primary tumor. Two nodes were affected and metastatis 0 meaning it hadn't spread beyond the Nodes in my neck.   First two weeks were a breeze, after that I lost my taste. I was still able to eat soft foods heck even hamburgers. It went down hill afer there. I was given Mucosoothe mouth wash I had to take 15 minutes before eating to numb mouth.   I had 35 radiation treatments and chemo Carboplatin once weekly for 7 weeks.   Week 5 is the killer, that is when I got bad mucositis, mouth ulcers and could no longer eat or drink anything. I had to have an Naso gastric tube inserted to take in Protien drinks and use a syringe to inject water so I didn't dehydrate.   I was given Fentanyl Patches and Endone for the pain.   Week 6 I had bad radiation burns on my neck with skin peeling and red bloody sores, both sides. These are some of things they dont tell you.   It does clear up a few weeks after treatment ends. Your Husband will find from about 6 onwards he will get thick ropey mucas. You are constantly spitting it out and sometimes feel like you are choking on it. This too will stop about 4 weeks after treatment ends.   He will find after that that He has dry mouth, very dry mouth. He will need take water with him everywhere he goes from then on.   My treatment ended in march this year, it took about 3 months for the hair on the back of my head to re grow, My taste still hasn't fully returned but is much better than it was. I still have dry mouth!   Main foods for me now are proien drinks, soups, I cant meat unless spaghetti Bolognaise...Steak, chicken, bread is out, just to dry to eat.   Saliva function may or may not return. If it does it can take up to year or more to return and it wont be like it was before. He might find due to dry mouth He will get a few trush infections. There are meds for that.   He will have a Pet Scan 3 months after end of treatment and another one 3 months from the first. Then one again at 6 months later. After that you have a Pet Scan yearly for 5 years.   I wish you both good luck.   Maurie ... View more

Hi Sheryn, Sorry to hear about your Father.   I was diagnosed mid october last year after an ultrasound then fine needle aspiration biopsy fowolled by a CT scan. I expected a medical swat team to rush me off to hospital to begin treatment post haste. It didn't happen like that though. I also had to have Pet Scan as well before treatment began as well as a 3 day stay in hospital after tonsil biopsy.   I was refered to a dentist for check up and extractions in January of this year and after further consultations I did not begin my treatment until Janaury 29 of this year. So basically it was 3 months after diagnoses that my treatment began.   Researchers estimate that for every 1 week of delay in referral, the stage of presentation will progress by 0.045 of ‘a stage’.   From what I have read online from others with the same oropharyngeal cancer it takes about 2 to 3 months of consultations and tests before treatment begins.   I wish you and your Father the best of luck.   Cheers ... View more

Hi Jen,   Taste can take anywhere from 6 month to a year to return. I had my feeding tube removed awhile back and food no matter what is or beverages all taste the same....Disgusting.   Taste returning also depends on how quick saliva function returns. That too can take can 6 month to year but may never fully return to how it was prior to treatment.   You will need to swallow water with each mouthful of food in order to swallow it.   The back of my head is still bald from Radiation 2 months out of treatment. It will take many months for it to regrow.   Cheers Maurie     ... View more

Chemo will slightly increase His chances of beating it. Maybe not by much but it all helps. May I ask why you are so worried about Chemo? Chemo will make the Mucositis in His mouth slightly worse but not by that much...again i't's the radiation that is the real villan here.   It's the Radiation that will really knock him for a six and not the Chemo. The Radiation will have far more dibilitating side effects than Chemo ever will.   Me...I'd rather ditch the Radiotherapy and take the Chemo. Unfortunately, they can't and wont do that.   Yes, you can do this without the Chemo and just do the radiation. Maybe ask His oncologists why they think He should have the Chemo? If they insist he has the chemo, ask if he can have Carboplatin and not Cisplatin. Carboplatin can be given in lower doses and doesn't have as many side effects as Cisplatin.   I would avoid 5FU with Chemo. That is one nasty drug. ... View more

Hi Rahul, First up He will have to see a Dentist and may need some teeth removed from top and bottom at the back before they can do Radiation. Have Him ask the Oncologists about these drugs... (Scopoalime Patches and Glyocoprrolate oral injections).   They may protect His throat and mouth from Mucositis (Mouth sores and Ulcers) There is another one called 3 D Block that can protect mouth as well. I wish I knew about them before my treatment. some of them may protect Salivary glands as well.   I would advise having a Peg (feeding Tube) placed in now before treatment starts if they cannot give him the drugs to protect His mouth. Or, a Naso Gastric Tube put in about weeks 5 and 6 as He may not be able to eat or drink anything by mouth due to Mucositis.   If your dad needs a feeding tube or naso Gastric tube they will offer high protien drinks which you will have to pay for I think $48 a month. If he has to go on these then get Movicol and Coloxyl and you may need to take them morning and night as the protien drinks are like Cement or will come out like Cement and He may do some damage to his back side as in tearing it when passing a bowel motion and believe me it is not pleasant when this happens. So a stool softener is must!!!   Drink, drink, drink plenty of water to during treatment or put it down the tube.   Radiation burns on each side of neack are possible, they give you creams to put on neck during treatment. With me, they didn't really help and by the time i finished my treatment the skin on my neck was peeling and blistering and it got infected in which I needed dressings and antibiotics.   I would bring up with his Doctors about taking Fluconazole  to take as a prentative measure against Oral thrush. He may need that from week 5 onwards. Oral thrush isn't nice either on top of Mucositis.   There will be big changes to his sense of taste and saliva. Both these issues will take a long time to resolve and may never fully resolve to prior to having radiation. he may be lucky and not have many issues there so i wish him the best of luck.   I'm still using a Naso gastric tube for food, my treatment ended on the 13th of March. I have tried to eat some foods but lack of saliva and the fact everything tastes disgusting keeps me using the Tube.   i wish you both the best of luck.   Cheers Maurie           ... View more

Hi All,   Thank you all for the words of encouragement it has kept me chugging along. I'm really in the dumps at the moment with these side effects. My neck is all bandaged up from Rad burns and skin peeling, I have almost lost my voice.   Nothing by mouth it all goes in the NG tube...including meds, I grind them up and put them down the tube.   Tatse, Smell etc all gone.   Thick ropey mucus...my god, its driving me insane. I have grade three mucositis so yeah mouth pain is quite bad. my radiation Doc managed to convince me into doing three high does radaition sessions when I officially finish my course of treatment on Wednesday. This would have taken me through to last session being Monday. This was just to give me a slightly better chance in the long run.   You know what? Over the weekend feeling misrable and just wanting it all to stop I decided stuff it! They can stick those extra 3 sessions up where the Sun don't shine.  😄   So i'm now back the original plan 35 doses of rads ending Wednesay and Chemo finsihed. And no, i'm not ringing the bell at the end of treatment out of respect for other patients there who will remain on treatment until their time is up.   Thank god, i'm tired! I just want my life back, to taste food again, to smell as before and to eat as one is intended to eat through the mouth.   Head and neck cancer is bad, as are all cancer's. Treatment for head and neck cancer is hell!   I hope everyone is doing well and again thank you. Sorry if I may have stressed some out with the side effects you can go through.   Sarah, sending your Mother my best wishes. Sorry I cannot be of help with your question. Perhaps try specialists in this field. Have a read here : https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/symptoms-causes/syc-20354123   cheers Maurie ... View more

Hi Rich,   Wishing your Dad all the best! All of us are different and what might affect me may not affect your Father. Several weeks into treatment you will feel fatigue but you wont spend all day in bed. Yep your dad will be able to go for walks and if He feel up to it He can drive. I managed to wash and detail my car but damn... I wish I didn't, it totally wore me out.   I'm onto my 7th week now of treatment and three days ago my voice became raspy and squeaky, sometimes, I can barely whisper and there is no way I could yell. It does become difficult to try maintain conversation well, it does for me.   Skype or whatsapp may be fine for Him if he can use them.   Cheers Maurie         ... View more

Hi April,   First allow me to apologise for my spelling on the last post. I was all over the place lol.   Yup! I had that talk with my oncologist about quitting treatment too. this was mid last week, I'd reasoned i'd done 6 weeks or just about and that should cover me. He explained to Me that treatment was almost over so why throw it in now? He also said...you quit now, you may be back here in 6 months at square one but this time we can't really hit with radiation and you will end up dying.   Apart from letting Him have a piece of my mind with the side effects and it (Radiation Therapy) being barbaric I decided to hang in there.   I'm being treated at Liverpool Hospital in Sydney. My radiation Oncologists are Dr. Fowler and Dr. Trad. My Chemo Doctor is Dr. Victoria bray.   The staff have been wonderful, no complaints there. Guess I wont be having the scrambled egg sandwhiches in chemo tomorrow now I have the NG tube.   It would be great when I have the last treatment that all side effects went away I know though this is not the case. I expect i'll have the NG tube for a good month after last treatment and that it will or could possibly be many many more months before things begin to return to normal.   I must say that I am more shocked about the side effects I/we are going through and or went through. I knew they would be rough but...Not this rough. Being told by my GP that I had cancer in the first place didn't freak me out. I reacted as one would being told you have the Flu.   Thank you for the advice April, I have taken it onboard. Anything to make last stretch more bearable is very welcomed.   Wishing you continued good health   Maurie ... View more