Tonsil cancer w with lymph node involvement
Comments
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I wanted to add to my original comment that I'm confident you will be back to the wonderful life you have lived because my path was a little worse than yours it appears and I am back to the life I lived previously with some minor saliva issues and fluoride trays.....
I also echo Chillg8r in that my wife was a rock for me and her emotions were wild and at times I took my pain/frustration out on her and she absorbed it all and kept on taking care of me in my darkest moments. I am fortunate to have a great marriage anyways, but I will NEVER forget what she meant to me during that time.
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Hello to ALL people here!
Thanks Remington, I hope all will be good with me. Its really good to have people close to you who are helping and supporting in these difficult days. Luckily for me, I got my wife who supporting me a lot, same as yours. She is so good to me and I can count on her always.
So, like I said earlier - its all started for me - I mean treatment. I had firt chemo and radio today. I woke up early morning just after 5 o'clock. Morning time I had blood tests and later on I went to radioteraphy which tooks around 10-15 minutes. Then I went to other buidling for chemo. I had some fluids before real medicine (cisplatin 100mg) and after that I took another fluids - all took around 6,5 hours. Its passed around 6 hours from treatment and I feel completly normal so far. Its quite late at my place and I will go sleep shortly and will reassess situation morning time. So far it is ok. I cant feel any diffrenece, maybe I am a bit just tired but I think it may be caused by the day full emotions, early woke up and that kind of things but tiredness it may come from chemo also but at present its really mild. Tomorrow I will have radio around midday and another "flushing" after chemo which should take only about an hour.
I am happy that is all started and that treatment is going ahead - 1 day just passed.
Have a good day everybody!
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Hi PKDTV,
I hope you are doing well on your journey. My husband has the same treatment plan...7 weeks radiation + 3 rounds of chemo. He started on July 14th, so he's halfway through radiation and has 1 more chemo to go. I have found the following to be very helpful. 1) Salt & baking soda rinses. He started rinses immediately and has not had any mouth sores or pain. He probably does atleast 6 per day. I purchased small refillable bottles so that I could put them in different bathrooms and in his lunch bag when he goes to work. It's always available. 2) Juice. I try to get calories and fluid in him as much as I can. Although water is great, he needs calories. 3) Ensure Clear. Another way to get calories, liquids, and protein. 4) Boost Very High Calorie. Everything taste horrible to him right now. But, he's able to tolerate the Boost quite well. 5) Protein powder. I can mix it with almost any liquid or put it in a smoothie to boost calories and protein. 6) Greek Yogurt vanilla honey. Great calorie booster for smoothies. 7) Honey. Same as Yogurt. 8) Xylimelts. Now that the dry mouth and thick saliva has kicked in, these are very helpful. 9)Cool air humidifier. I'm not sure if it's beneficial, but we turn it on every night. 10) Tongue/throat exercises. We saw a speech therapist before treatment and she gave us several exercises to help during treatment. We weren't that committed until someone from this group reminded us how helpful they were. He has been doing the exercises 3xs per day.
I'm really not sure if any of this stuff is working, but we are going to keep at it. The second round of chemo was rough. Combined with the saliva and lack if taste, he's not very happy. But, he's doing great. You will too.
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Hi TawandaJ,
I am towards the end of my 3rd week treatment. So far it is not so bad. Chemotheraphy was very ok for me, I felt tiredness for 2 days only, and literally that was it, nothing more. I felt completly normal and I came back to sport activites as I used to do before cancer. Since few days I feel sore throat. I am not able to eat everything as the throat can be really painfull. I am eating kind of food which can eaisly pass through my throat. Apart of that I got quite a few medicines which help me to flush my throat. I really got good appetite but sometimtes it is difficult to eat due to pain. Anyway I am trying do my best and eat as much as I can. Of course I am using also this very high calorie drinks. In regards to my taste, I think it is a bit diffrent but at this moment it is still ok. So far I didnt lose weight, I am still 90kg. 22nd August I will have second chemotheraphy. Couple of days ago they did blood tests and said all blood parameters are normal and within limits. I have noticed also that my lymph node is almost back to normal, there is no lump on my neck anymore, also tonsil looks normal for me. Anyway I think the worse is still ahead of me, but I am very happy that till now is good and that I am almost at half way in my treatment and I can see effects already. I hope your husband is still doing ok and looking towards the end of his treatment. Best regards to both of you!
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Glad to hear you are doing well. I am sure you are going to continue to do well. There may be some bumps in the road, but just positive and keep pushing. My husband is pushing through. He is officially in his sixth week of radiation today, so we are happy to see the light at the end of the tunnel. The second round of chemo was rough due to nausea and fatigue, but he is on the upswing now. He returned to work yesterday! It really is one day at a time!
Please continue to reach out to this group with any questions, concerns, and/or news. This group is sooooo helpful.
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Przemyslaw, so glad you are doing well with the treatment and got to the three-week mark. I believe that is about halfway. I am glad you are able to eat and the medicines they are giving you in that respect are doing the job. You have the right idea of using easy-to-swallow food and supplementing high-calorie drinks. Wishing you continued good results with your second chemotherapy coming up and certainly glad your blood tests came back looking so well. Also, the lump on your neck is gone which shows how well the treatments are working, good for you. You are right the worst may be ahead of you but some people get through this with effects not as severe as others. Lets hope you are one of them.
Wishing You the Best
Take care, God Bless-Russ
NEGU
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Tawanda, Your husband is doing excellent. Sounds like a little trouble with nausea and fatigue but he is almost finished at 6 weeks of treatment. That's pretty amazing he can go to work. I was so exhausted and feeling lousy at 6 weeks I could have never gone to work. So that is an exceptional Blessing for you folks. Maybe the treatments they have nowadays are easier to handle or maybe your husband is an exceptionally strong individual. Either way so glad for both of you.
Wishing You the Best
Take care, God Bless-Russ
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Thanks, Russ! He is trying. I am concerned because of his decreased calories and the labor intensive job, but he knows he can come home anytime he wants. I think it lifts his spirits to get back to work. We have been very fortunate and I am not losing sight of that!
Thank you for always being so encouraging and helpful! It means a lot.
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Thanks TawandaJ, its really good that your husband is doing well and you are almost at the end of the treatment!!! Very good that he come back to his work! I can't come back to my work unfortunatelly as I am working abroad and need to leave my home town for about 1 month, then I come back to 1 month leave, so I need to complete treatment first. As I understood he will have third chemo after completion of his treatment, same as me. Shortly you will reach to the point from which things can only be better!!!
Best Regards,
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Thank you very much Russ. Yes, you are correct is almost half way mark for me. I will pass shortly this mark and from then I will be counting days to completion my treatment. I am ready that things might got worse and I will feel bad but I am positive, really positive and I am happy that I can see effects of the treatment. My attitude change significantly since first post here and I am completly different person. I am stronger and I know that I need to fight and never give up. I know also that I will beat this thing and come back as healthy person. That is my goal and I am going to reach it soon.
Best Regards,
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Witaj Przemek,
Where are you located? Is your treatment in Poland or the US? I am also from Poland but live in the US. My mom had tonsil cancer back in 2010, fought it for 2 years, first it was surgery to remove the tonsil cancer, then left neck disssection to remove cancerous lymph node, then 6 weeks of radiation (no chemo). Couple months later the cancer spread to the right side of her neck in 1 lymph node, she had another nect dissection. Then the cancer spread to the side of her tongue which was surgically removed but she couldnt have any more radiation and chemo by itself doesn't cure the cancer. It is only used in conjunction to make the radiation work harder. Then the cancer spread to the back of her tongue which was also surgically removed. Guess what? since that last surgery she has been cancer free for 10 years! So basically she had 3 local recurrences. After the initial radiation she had lost taste for few weeks, lost few punds but never had to use a PEG tube. She doesnt speak English so I had to translate everything to her after each visit, this was breaking me but I stayed positive and literally told her every time that the prognosis is good and she will be fine. She stayed positive and she is still here. You will get through this, I promise. If you need more info feel free to ask. My mom has been cancer free to 10 years but I am still looking on this website and try to encourage others because others were encouraging me when I needed it. I wish you best of luck and let us know how your therapy is going.
Pozdrowienia
Joanna
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Thank you Joanna for sticking around and helping others with your experience and knowledge. Your Mom went through a lot and so did you because I bet you were right there with her. So you have plenty of experience to share.
Thank you again.
Take Care God Bless-Russ
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Witam Joanna,
I am located in Poland and live in city called Szczecin. My treatment is in Poland in cancer institute center called - Zachodniopomorskie Centrum Onkologii. I think I got really good doctors here. I took 2nd chemo on 22/08 and I felt little bit weak and have no appetite after it. After few days all back to normal and I am eating now completly normally. I have lost my taste and it is weird sometimes but still ok for me. I can smell food and see what I am eating and that is how I manage without taste. I am in week 5 of radiation, I will finish on 15/09. Really I feel completly normally and when I compare how other people feel after this treatment I think I am very lucky. My side effects are minor and only after chemo. My 3rd chemo should be on 12/09 and will be the last one. Anyway my doctor have to decide finally if I am going to take it or not. After 2nd chemo my WBC dropped down little bit and as a matter of precausion my doctor gave me some injections to apply at home. I have completed it already and my WBC come back to their normal values. I am stying positive and thinking about coming back to work once my treatment and recovery will be completed. In regards to my weight, when I find out about cancer my weight was 85kg. Then I was told to eat and eat and eat so I did it (generally I love to eat, really love it) and I gained weight till 91kg - checked on 1st chemo. When I startted treatment I still got taste and zero side effect so I conitue eating and during 2nd Chemo I had 93kg. After 2nd chemo I suffered nausea a bit and lost of appetite. I have checked weight yesterday and I was 88kg. I think I am doing pretty well and I wish that all people have at least the same way as me or better.
Dzięki i Pozdrawiam
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Ciesze sie ze jakos sie trzymasz i ze czujesz sie dobrze. I am also happy that you have a good set of doctors as I know that most of the time the healthcare system in Poland is not the best unless you do it privately. Dont get discouraged if you will still feel the side effects of radiation up to few weeks after finishing it. This is when it actually works the most. You are young and strong and you have a great support system with your wife besides you. Stay connected with us.
Do uslyszenia!
PS. Your English is great, how did you even find this website?
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A lot of things in Poland have changed and there are places where you can receive really good healthcare and it is not privatelly! There are few famous cancer instutites in Poland - one of them is in my city and the other one is in Warsaw and another in Gdansk. Really good doctors working there. I have find out about this website by typing couple of words to google - "head and neck cancer forum". I am using english language every day at my work so I need it to know at least on level to able to communicate with other people.
Pozdrawiam i dobrego dnia!
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Hello all again,
Tomorrow I am going to finish my course of treatment. Total 33 radiation and 2 chemos. Third chemo, planned initially, finally was cancelled. I feel pain since 4 days, mainly sore throat and tongue pain. I want to ask about something. It looks like my tonsil is back to normal completly. My lymph node is almost back to normal as well. It is very small, size of the pea. I can barely feel it when I touch it. I am wondering how it was in your cases? Is it back to normal completly after the treatment or later? I will do MRI scan middle of November and then will know if I beat this thing.
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Scary times, when first diagnosed. Just know that this cancer is very treatable, especially the hpv variety. my advice is to pack on weight as much as you can before treatment.
I am a 10 year survivor with similar diagnosis. Life isn't perfect, but Im doing good.
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