Finishing up radiation, when will side effects get better

Options

Hey, 

I'm new.  Back story, I have (had) intermediate grade Mucoepidermoid Carcenoma of the submanibular gland.  I had a lump in my neck for forever that they couldn't figure out what it was on biopsy.  ENT decided to remove the cyst or whatever it was.  Had the tumor removed back in October, had to be sent to Mayo to get diagnosed (which took forever), and then did a neck dissection just to make sure my ENT got all the cancer.  My lymph nodes were clean and nothing showed signs of cancer.  It was recommended that I do radiation to increase my odds of it not coming back (went from 50/50 to 10%).  

 

I am 2 sessions away from finishing 30 rounds of radiation and I'm absolutely miserable.  I have been for weeks.  I can't keep anything down, everything tastes like metal, and I now have a constant burnt taste in my mouth.  My mouth sores have been pretty awful for a few weeks now.  I'm pretty ready to get my life back on track.  I'm 31, I have 3 kids under the age of 6, and a very overwhelmed husband.  

 

So, I've read a few different things.  I've read my mouth sores will resolve 1-2 weeks after my treatment ends and I've also read that I won't finish "cooking" until 2 weeks after.   I'm eager to hear other's stories.  

Comments

  • swopoe
    swopoe Member Posts: 492
    Options
    My husband finished radiation

    My husband finished radiation for tongue cancer on January 20th. That last week of rads was the worst for him. It was like limping over the finish line. He was miserable. I felt horrible for him. The week after he was in pretty bad shape too, but not having to go out daily for rads helped. After that, he turned the corner. he has recovered really well, and now at about 2 months out, he is about 85% of the way there. No real complaints except for some funky taste buds. Mouth sores healed up fast and then mucous was next to go away. You are almost there....keep hanging in there!

  • Barbaraek
    Barbaraek Member Posts: 626
    Options
    My husband had horrendous mucositis

    and it lasted for at least 2 weeks after the last radiation tx. He got "radiation recall" mucositis and mouth sores when he tried a course of adjuvant chemotherapy. The thing that helped him the most was mixing L-glutamine power with water. He also used a product called GelClair. Praying you experience relief and healing soon!

    Barbara

  • tomb247
    tomb247 Member Posts: 54
    Options
    Hang in there!

    Rachael,

    Welcome to the gorup. Sorry you had to find us but glad you are here. This site is a great resource. There are many people with similar stories and a ton of good information. My diagnosis was different as I had SCC Base Tounge and Tonsil. 

    Everybody is a bit different. I had 30 treatments also and did cook for a few weeks afterwards. About two weeks out I started to feel better (Oncologist said about 2 weeks out I would wake up and think, wow I do not feel as bad as I did yesterday and that kinda happened). I am now 1 year post teatment and doing pretty well. Have a lack of saliva and taste is still rebounding. 

    There are many things that this group can give you information on. If you read through some of the threads you can find good inforamtion about the mouth sores and what you can try. I used aloe vera juice (100%) mixed with seabuckthorn berry oil. Rinsed and gargled a couple times a day when I was able to. 

    Please feel free to contact me at any time and hope you find info you need.

    Peace, Tom

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Options
    Welcome to CSN H&N

     

    The good part is that you are finish with the treatment, and now your body will take some time to heal itself, that is the good news. Everyone is different and so some heal faster than other but hang in there because every day your body will be getting stronger and before you know it the taste will come back and the mouth sores will not be as many.

     

    Tim

  • wmc
    wmc Member Posts: 1,804
    Options
    Welcome to H&N group

    Welcome to the group, and sorry you need to be here. The recovery does take some time. You're cooking I think is more like two months, not weeks. [ 6~8 weeks] The recovery is different with everyone, but it is slow with all. No weeks and days, but weeks and months. You are just about through the rough stuff, and will be on the mend. Just take one day at a time. With the neck dissection you may get the feeling back. I had it on both sides and the right came back but the left never will for me. It is a rough road to have to go down, and lots of side effects from radition for years.........

    Bill

  • MGC
    MGC Member Posts: 72 Member
    Options
    Side Effects

    The first thing I would do is get another opinion. Sounds like poor Diagnosis in the first place but that’s just me.

    Mouth sores were the worse about 1 month after treatment ended. It takes time and patience after that. Don’t look for miracles. Be happy you are here talking about it. I am 6 years out and still have serious bad side effects. Whenever I get to wondering if there is something better out there I come here and after just a few minutes I realize my situation is a cake walk compared to some on these boards and my situation is no picnic. There is some great folks here and some great info. It is the place to be in my opinion. Good luck. Spend some time reading up around here and you will be amazed how much information is here. Good luck.

    Mark

     

    ps, i would be glad to share more info if your interested

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Options
    Hey youself

    Hi Rachelisawesome,

    Nice name and welcome to the H&N forum.  You should be on the mend soon, very soon.  It is kind of late in the game, but I always used magic mouthwash for throat, mouth and tongue discomfort.

    The one thing that seems to be universal for all of us is time, healing time moves slowly, very slowly.  The one bright spot is it gets better, much, much better.  My “new normal” is different, but pretty darn good.

    It took me months to get back to eating fairly normal, but I tried everything along the way.

    You will do fine.

    Matt

  • the_wife
    the_wife Member Posts: 184
    Options
    Hi Rachel

    Everyone goes through this experience differently, although the side effects you are experiencing sound perfectly normal. We were told that you 'cook' for at least 3 months afterwards and that is why they wait until then to do the first scan. In reality though, I think the radiation lingers for a lot longer than that!

    My hubby was very sick from the very first chemo and it went downhill from there. He had severe mucositis, nausea, mouth sores, pain, and thickened mucus that lasted for several weeks, if not months, after his treatment.  But again, your experience may be different, so don't lose hope. You may be one of the lucky ones who gets through with minimal effects.

    During treatment my hubby had a feeding tube which is the only way he could get nourishment. Do you have a tube? If not, I highly recommend it, although at this point it sounds like you are almost done so it may not be needed. Rely heavily on your medical team and reach out to them whenever you need it. I'm always so surprised by how little information and support is out there for patients, but you never know what is available until you ask. And of course  this thread is so helpful! Everyone is willing to help or just lend an ear, so don't be afraid to post...if only just to vent.

    I hope you have friends or family who can help with the kids. I can't even imagine! I had a hard enough time taking care of just hubby and me!

    If there's one thing I've learned during this whole process is that patience is most definitely a virtue. Take things day by day or moment by moment if you need to! 

     

     

     

  • MrsBD
    MrsBD Member Posts: 617 Member
    Options
    Welcome

    Welcome to the group. By the time you read this you will be done with radiation therapy! It is true that the mouth sores don't just disappear overnight, but they should start to improve in a few weeks. It's going to be important for you to get good nutrition to help speed healing and improve any fatigue you might be feeling. (With three little ones, fatigue is probably your usual state anyhow!) I had 33 sessions along with Erbitux and no feeding tube. At about the 4 month mark, my sore throat and mouth sores were completely gone. It's been almost 18 months and I feel normal again. It's a long road, but you will feel better again! 

  • JM0377
    JM0377 Member Posts: 18
    Options
    5 months out

    Hi Rachel,

    I am 39 yrs old and a few weeks shy of five months post-radiation treatment for adenoid cystic carcinoma in my salivary gland. I had eight sessions of carbon-ion radiation and 25 sessions of IMRT. My worst weeks were from week four until about two weeks post-radiation. The burns on my neck hit their peak about four days after my last session. They were easily an 9/10 on the pain scale. However, about a week later the burns healed rather easily. My taste is pretty much back to normal. There was about a week that it tasted like someone poured salt in my mouth at all times. The worst of the mouth sores healed a few weeks after treatment, but it took a couple months to completely go away. My mouth is still sensitive to spicy foods and citrus. It's not that I can't eat or drink them, my throat just gets irritated for a few hours or even a day. I really missed orange juice, so sometimes I just dealt with the irritation. :) While they told me I would probably never regain my salivary function, I'd say it is about 90% back. I don't have to always have water. I would say it is mostly a dry mouth as if I were dehydrated. Honestly, I know I don't drink enough water, so it could be both. My biggest issue is exhaustion. I had to go back to work one week post-treatment. So, right away I was having to work 12-14 hour days. I wouldn't say I have the energy to do it, but I get it done. There are days I feel more energetic and others where I could sleep 18 hrs and never feel any difference. I do agree with others that each day/week you are past treatment, you feel better than before. I do have some lymphatic fluid build up in my neck area, but nothing too extreme. I would definitely recommend trying to rest and take care of yourself. I think the biggest thing for me in the weeks after radiation, I woke up everyday just grateful that I didn't have to go to another session. Best of luck in your healing journey...keep in mind that it can be a slow crawl back to an almost normal. 

    Sincerely,

    Jennifer

  • surfer
    surfer Member Posts: 5
    Options
    JM0377 said:

    5 months out

    Hi Rachel,

    I am 39 yrs old and a few weeks shy of five months post-radiation treatment for adenoid cystic carcinoma in my salivary gland. I had eight sessions of carbon-ion radiation and 25 sessions of IMRT. My worst weeks were from week four until about two weeks post-radiation. The burns on my neck hit their peak about four days after my last session. They were easily an 9/10 on the pain scale. However, about a week later the burns healed rather easily. My taste is pretty much back to normal. There was about a week that it tasted like someone poured salt in my mouth at all times. The worst of the mouth sores healed a few weeks after treatment, but it took a couple months to completely go away. My mouth is still sensitive to spicy foods and citrus. It's not that I can't eat or drink them, my throat just gets irritated for a few hours or even a day. I really missed orange juice, so sometimes I just dealt with the irritation. :) While they told me I would probably never regain my salivary function, I'd say it is about 90% back. I don't have to always have water. I would say it is mostly a dry mouth as if I were dehydrated. Honestly, I know I don't drink enough water, so it could be both. My biggest issue is exhaustion. I had to go back to work one week post-treatment. So, right away I was having to work 12-14 hour days. I wouldn't say I have the energy to do it, but I get it done. There are days I feel more energetic and others where I could sleep 18 hrs and never feel any difference. I do agree with others that each day/week you are past treatment, you feel better than before. I do have some lymphatic fluid build up in my neck area, but nothing too extreme. I would definitely recommend trying to rest and take care of yourself. I think the biggest thing for me in the weeks after radiation, I woke up everyday just grateful that I didn't have to go to another session. Best of luck in your healing journey...keep in mind that it can be a slow crawl back to an almost normal. 

    Sincerely,

    Jennifer

    amazing bees are helping my mouth sores

    Tongue Mouth Sores

    This was something I was not expecting. And no doctor told me about possible tongue sores. When they radiate your throat they will get parts of tongue radiated as well on accident. Remember, your tongue is "in the way" on the radiation beam. So about 5 weeks into my treatment I started to get these type of canker sores (i.e. radiation sores) on the sides of my tongue. And this hurt more than my throat did. Because anytime you moved your tongue or tried to eat/drink something....it would really hurt. 

    I asked my radiation doctor about these tongue sores and he said there was nothing to do about it. Of course I said "What the fu..?", there must be some way to alleviating the pain and healing these sores. They almost look like canker sores on the sides of the tongue. So guess where I did my first search...Amazon.com again. And I found this super cool product that is used by people that have canker sores. So I ordered and said to myself again, what is the worse that can happen. Spend a little bit of money and time...and it works great. 

    So guess what...it worked wonders. It hurts like hell (for about 5 seconds) to apply the affected areas. But afterwards the pain in deadened and a thin film of coating covers the sore area. Amazing technology. I have no pain for about 3-4 hours. I used both during daytime before eating and also right before going to bed (so I would have no tongue pain while sleeping). And ironically, when you apply to the sore area, you need to swallow after applying. And amazingly the medicine would go into my throat area when I swallowed my salvia and my throat would actually be less sore. Go figure.

    Here is the actual product I purchased from amazon: Canker-Rid - Get Immediate Relief and Heal Canker Sores from Durham's Bee Farm. Here is link to buy on amazon: http://smile.amazon.com/Canker-Rid®-Immediate-Restore-Quality-GUARANTEED.
    Directions: For sores inside the mouth, dry the affected area with a tissue. Then use a q-tip to apply Canker-Rid directly to the sore. The pain from the sore will stop almost immediately.

    The stuff is actually made from bee pollen. Those amazing bees are helping my mouth sores:))

    Robert
    DryMouthThroat.com
    HPV Throat Cancer -  Treatment and Recovery - What Worked for Me