Head and neck radiation side effects

Jddisalvo
Jddisalvo Member Posts: 2
edited August 2022 in Long-Term Effects of Treatment #1
Hi my name is Justin and I am 30 years old. I was diagnosed with stage 1 nasopharyngeal carcinoma in August 2015. I completed 35 treatments of radiation therapy and 3 cisplatum chemotherapy treatments. My last day of these treatments was October 22nd. 

 

I am looking for relief and information and I hope that somebody can help me. I am truly desperate for some support with my side effects. I have read so much information on the Internet and talked to my team of doctors, but I really can't find any real relief from my symptoms. I don't have the best doctors, and they say that there is nothing j can do about my side effects. 

 

I won't bore you with the pain I've already gone through, but if you want to know more, I'll be more than happy to tell you my story. 

 

My major problems my salivary glands and my sore throat. My salivary grands aren't producing enough saliva and my throat and mouth are covered in thick mucus all of the time. Due to my side effects, I wake up every hour and choke, which is extremely painful due to my sore throat. 

 

I'm taking hydromorphone and saligen and omaperazal as far as medications. I've had a peg tube since my fourth week of treatment. I've read and practiced many of the remedies, tried magic mouthwash and carafate solution. Nothing seems to work successfully, which is why I say that I am desperate for relief and information. 

 

Here's are a list of questions I would like to ask somebody who has done my treatment in the past:

How long did it take until the sore throat started to subside after treatment was over?

How long until the salivary glands started to get better after ending treatment?

How long until eating was starting to get better?

Is there anything you would truly recommend to relieve the pain until side effects start to get better?

 

Please help me with any information. Even if you don't feel like it is important enough, I don't mind any extra information. I'm at the point where my quality of life has been diminished. I've had to quit my job, I'm in pain every single day and I really hate living right now. The mornings and night are the worse because that's when the side effects are at the pinnacle. I wake up, gag and choke, try to feed myself through the tube and throw up. That has been my life since week 5 of treatment. It's extremely depressing to think that there is nothing I can do to help myself. I have been taking care of myself since I've been 18 years old and always figures things out for myself. To try so many things and do so much research with no help is so very hard on me. Thanks for your time. 

 

 

Justin

Comments

  • Karip7
    Karip7 Member Posts: 3
    #2
    So sorry to hear you are

    So sorry to hear you are having a hard time with side effects. I just finished 6 weeks of radiation on my neck 2 weeks ago. I would say my throat started to feel better 2 weeks after treatment was over. While my throat was in a lot of pain I took tramadol, it's not a norcotic so doesn't have many side effects but it is something stronger than Tylenol. I'm Still having coughing problems, I have a lot of phlegm in my throat from radiation. So at night I sleep in a recliner chair, that way I'm propped up, this can help with cough and choking. I also sleep with a humidifier on. My doctor prescribed me some coughing pills called benzonatate (perles) they seem to help a lot. I hope you have had some improvement since your last post! 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Justin

    I too had NPC also known as nasopharyngeal carcinoma, I am now 15 years passed my first treatment I will send you my e-mail address.

     

     

    PS: You need to post on the Head and Neck page you will find a lot more of us there

     

    Tim

  • Patfishman
    Patfishman Member Posts: 2
    edited August 2016 #4
    the mouth

    Hi Justin. I went through 6 weeks of radiation and 3 chemos for squamous cell carcinoma on my lymph nodes and base of my tongue. Brutal. I ended in February and have struggled with the same things. It did improve with me but I still get nasty phlegm or my mouth dries out so bad I call it Jim Carrey mouth (from Me Myself and Irene when he had dry mouth). I have water with me always. My doc told me my salivary glands will the best they will be 6 months after treatment. There has been a decrease in functionality and I'm afraid it's as good as it's gonna get. I keep thinking it beats the alternative. Also my tastes have changed a lot. I used to be a pizza junkie but now It's hard to find one that tastes good. I still get tremendous pain in my throat and ear when my sinus's get bad with allergies. Intense pain. I use OTC Benedryl or Sudafed, claratin in the AM as well as flonase. That usually takes care of it within 20 minutes. How are your sinus's? Do you suffer from allergies even just a little? Anyways, good luck brother. Heal. PEACE

  • fullhouse
    fullhouse Member Posts: 7
    #5
    As a patient, hope I can help

    As a patient, hope I can help. I had tonsil (and surrounding tissue removal)removal and rad neck dis. 2 weeks later. Throat was a mess. Only weigh 150, and I dropped to 119 ( I looked like the actor in unforgiven when he was a POW). The one food I liked (got sick of egg/mashed potatoes) I got the pre-cooked angus burgers @ Costco. Put them on crumbled Dorito's or Fritos and nuked them. It made the chips mushy, but good. Didn't want a feeding tube (personal reasons only), but 1 more pound and I would get no chioce. Also got the variety cheesecake frm stater bro's. I would eat this over 3 days (there pretty big). Boiled hot dogs (cut up and not too hot) also. You will get thru it. I did. coming up on my 1 year post (33) rounds of radiation also. Set short term daily goals, get fully in the fight and show cancer who's better. Sense of humor helps. If I drank water or a beer and leaned forward to quick it would run (like a fountain) out my nose. Thankfully that went away in a few monthsTake walks, enjoy sunsets, family,friends and thank God your still here and have the ability to feel like crap, it is better than the alternative! Stay strong my friend!!! (off to work and yes it's 3:30 AM)

  • ElsaB
    ElsaB Member Posts: 1
    #6
    my partner

    Mypartner had throat cancer and is in remission after chemo and radiation. now she is having necrosis of her jawbone. The surgery choice we are getting from Boston Medical Center is a debridement to healthy bone through the mouth, with a two week recovery or going in through the neck and having a part of the jaw removed and replaced by a piece of leg bone, and a three month recovery.  I think that there is no guarantee with either procedure, that it will stop more bone death.  Does anyone have any experience with this?

  • aprilshower55
    aprilshower55 Member Posts: 31
    #7
    Hi Justin, I feel your pain,

    Hi Justin, I feel your pain, I too need to get up from choking on my phlegm, I use a suction machine DeVilbiss 7305 Series . I hardly sleep more than 1 1/2 hour. Sometimes I can't even sleep because I have to suck every min. gaging and coughing like you.  

    For the dry mouth,  My doctor prescribe me CEVIMELINE HCL to help with my saliva, but I stopped because it cost too much even with insurance it was 100.00 for a month.  Someone on this board told me about XYLIMELTS you can get this on line too.  I am still using it, I just put it on the side of my mouth and it helps with my dry mouth.  I hate to tell you the side effects from Radiation is hell.  The doctors don't tell you about the DELAYED side Effects.  I have a ton of it, would you like to hear? Now I had my Radiation in summer of 2011, my cancer came back to my lungs (both) in 2013 summer.  There is no cure for NPC, is a rare cancer and I even did a trail chemo that did not work too.  I had it with CHEMO being so fatique and no energy I could hardly walk so I decided to stop CHEMO in March of this year.  I have another delayed side effects I just found out the name last week "Radiation Induced Fabrosis" My neck and shoulders was so stiff I could hardly turn my neck.  It is mostly on my side. The doctor wants to give me Botox Injections, but again there are side effects and I am not sure I want any more side effects.  So right now I am doing research on this Botox and there is no cure for this also.  I would need to get Botox every 6 months more Toxin in our bodies.

    I too have a feeding tube, and try to go slow when you feed yourself.  Also what Shakes are you taking now? I have found a Whole Food Shakes (Organic) to feed myself.  Ask your dietian to request it to your doctor and he can request it o the insurance and hope they will approve.  The feeding tube has it's advantages.  I can feed supplements, Herbs, Spices, and Vitamins without worry about the taste.  Also I am not able to swallow, eat, or drink due to this delay side effect 4 years ago. I had to have a G-Tube. Oh forgot to mention I can't move my tongue and I am not able to talk. I use a Boogie Board is a writing board. One more thing Radiation also damage my hearing too.  I have a hole in my left ear drums lost about 35 % of my hearing.  No more water activties can't even wearing hearing aid my ears gets infections often too. The Internet and Doctors don't know much about the side effects or the DELAYED SIDE EFFECTS.  I wish you luck and hang in there.  If you want more information you are welcome to chat with me. 

  • royrada
    royrada Member Posts: 15 Member
    #8

    I am 20-years post-radiation and the adverse effects of radiation are progressive and irreversible. Some of the signs and symptoms of my radiation-induced diseases have only appeared in the past couple of years. I can explain the pathophysiology based on the literature in the case you want to know it. My own reason for coming here today is to seek suggestions about a caregiver in the Orlando area who has any interest and/or experience with long-term adverse effects of radiation. Does anyone on this board care to give me any advice on this issue of finding a doctor?

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    edited August 2022 #9


  • royrada
    royrada Member Posts: 15 Member
    #10

    Hello MarineE5, I am new to the CSN and not yet familiar with the protocols. I received an email a few minutes ago which said this: "Good Day Royrada, I stopped in the Chatroom today and saw that you were Stage 3 Head and Neck cancer survivor. Sky mentioned my name to you. Sash stopped in wh…", was signed by MarineE5, and offerred me a link labeled "check it out". However, when I follow the link I come to a blank post with only your name on it and a timestamp of 6:39 pm. Did you provide somewhere text after the "wh..."? Anyhow, I am pleased to have heard from you and thank Sky for telling you about my case. By the way, I thought I was in a chat with Sash early this morning but I needed to leave. I had written two lengthy 'texts' to Sash immediately before I left. Do texts in the chat get deleted when the person writing them signs-out? I don't see my texts though I was hoping they were somehow available to Sash (or anyone else for that matter). Thank you again, Roy

  • royrada
    royrada Member Posts: 15 Member
    #11

    By the way, I don't want to bother you with basic tutorials about how to use a discussion board. I was moderator of the ACOR HNC discussion board 20 years ago and started my own on Yahoo after that. I understand the principles but not having used this CSN site, will make some missteps in the beginning perhaps. But the content is what matters. I don't know whether Marine or Sasha wanted to offer to help me or wanted help themselves. If you want help, then please leave me a message. Till such time as I learn how to use the CSN software, you might help me by also emailing the message to my personal email box and point me to where I will find it on the CSN site so that I might make an appropriate response on the CSN site. I'm not keen on synchronous text chatting as in the CSN chat room but prefer asynchronous mode as in the discussion board. Thank you for your patience, Roy Rada

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