New and seeking advice

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Rick60
Rick60 Member Posts: 9
edited October 2016 in Head and Neck Cancer #1

I was recently diagnosed with cancer this summer for the first time. It is localized in my neck and was told it originated on the back right side of tongue. A few weeks ago I had surgery and they removed 16 lymph nodes on the right side of my neck.

Going into surgery I was told I will have lots of pain when I come out. That did not happen. They also removed my tonsils and did a biopsy on my tongue. I had no pain but was sore. The following morning I actually had an omelette for breakfast. I will admit that I am not knowledgeable to cancer treatment and so forth. I am only going by what the doctors and other told me.

Now I am preparing for radiation and chemo for 6.5 weeks.

For those who have been through this, can you share with me what you experienced and some of your tips on how you recovered from the treatment? What did you do to reduce dryness in your mouth, mouth sores, swallowing and radiation burns on your neck. Any advice you can share is greatly appreciated.

Thank you in advance

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Sorry you are here to start with

    As Phrannie often says, Welcome to the club no one wants to join. You have located a good site and a lot of good people with a lot of knowledge to share. I will make a small suggestion to you, please take the time to view the first topic on this section of the site. The Superthread that is a combination of a lot of issues and recommendations that many have shared here.

    http://csn.cancer.org/node/261072

    This should help with some of your questions. You will find in many replies that continued drinking of water is a most. Hydration is very important in all of this, and helps keep the swallow motion so when you are in the treatments you can try to get all the calories and nutrition in that are required. 

     I don't want to ramble on with a long list of things that you should or shouldn't do, so I'll wait until you pick a certain item you need answers for. One thing that is often stated, we all handle treatments and recovery differently. Some have few side effects while others have more, some recover quickly, others slower. Do the best you can to complete everything. Lean on us here for support.

    My Best to You and Everyone Here 

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hey Rick....welcome!

    The SuperThread is a great place to start this trip (I'd use the word journey, but that would make it sound interesting or fun). The two things that don't seem to miss anybody during radiation is loss of taste, and dry mouth (that is bone dry).  Both of which make a come back...sometimes all....sometimes not quite all....sometimes just some of it.  It took 3 years for my tastebuds to make a recovery, my saliva is about 60%.  It's all good tho. 

    Chemo seems to affect different people differently.  I was a little sick for 3 - 5 days, and then I'd be good for the next two weeks before my next chemo.  Others get pretty sick from it. 

    Since you ate an omelette after your tonsils got taken out, I say eat now...all you can and want...anything you want.  You're going to lose weight during the treatments.  I only lost 20 lbs, others lost a lot more.  Having extra weight now helps, tho.

    As treatment goes on, come here and ask questions....we are a practical group, and have tricks up our sleeves that the Drs. don't even know about, or think of....I'm still giving my Onc ideas that he is now passing on to new patients.

  • Raddude
    Raddude Member Posts: 84
    edited October 2016 #4
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    My experience...

     

    When I found out what I was about to undergo I poured over every bit of research I could find. Everyone is different and everyone is affected differently. I personally don't agree with eating any and everything you want pre-treatment. I believe you should prepare your body for battle. Getting your body in fighting form was the way I approached my treatment. I found the videos below to be extremely helpful. Cutting out sugars was the main thing. I used an organic whole food meal replacement instead of the sugar based ensure and other meal supplements after I was unable to swallow anymore. This is gone over in detail in the nutrition video. I never had mouth sores, thrush, etc. I also highly recommend a feeding tube. This is what worked for me, again everyone is different. One thing I wish I had done before and during treatment was acupuncture. After treatment I began acupuncture and it helped a lot with taste and saliva. There are those who did it on this board who never lost their taste.

     

    Good luck to you!

     

    Healthy Nutrition and Keeping up your Immune during Radiation   https://www.youtube.com/watch?v=I05vEd-MrOo

     

    Natural tips for skin-care during and after radiation treatment https://www.youtube.com/watch?v=wuHx34zwL0A

     

    Natural Mouth Care During and After Radiation for Throat & Neck Cancer https://www.youtube.com/watch?v=OGieHbK8kdk

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited October 2016 #5
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    welcome

    Rick,

    Welcome to the H&N forum, a stop off on the cancer train.

    I had very little pain, mostly mouth, throat and tongue discomfort for which I used magic mouth wash successfully.

    I had neck burn which was extremely painful, but  used silver sulfadiazine cream, great stuff.  NOT everyone gets neck burn.

    I drank 10 glasses of water a day and still do at 4.5 years post.

    Consume 3k calories a day in any way you can.

    Matt

  • Rick60
    Rick60 Member Posts: 9
    edited October 2016 #6
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    Thanks everyone. I did look

    Thanks everyone. I did look at the superthread and have read many of them and still reading through them. I think I will be starting treatment around November 14 and I am ready to get started so I can get it done.

    Matt, I did see them videos and they did provide some helpful information.

    I recently created a blog to share my experience and hope to pass on my experiences with others that you may see here:

    http://mycancerreport.blogspot.com/

    I am very active so I am hoping that helpssgue and other sypmtoms. I will keep you all posted on how I am doing.

     

    Again, thanks

  • wmc
    wmc Member Posts: 1,804
    edited October 2016 #7
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    Welcome, and also sorry you have to be here.

    Welcome to the H&N group. I only had surgery as my lungs were bad and when they removed my larynx they got the tumor and everything around it. I never needed chemo or radiation so the others will answer those questions. Get the attitude that you will beat this and never give in, or give up. It is beatable. It is one very hard road to go down. Doctors say that Head and Neck is the second hardest treatment there is. Now the good news is it is beatable. Drink water and stay hydrated, you can forget how to swallow if they have to do much surgery. You have found the best support group and will help you get through this. I only pop in every so often as I have to spend so much time working with laryngectomee support group, and doing some videos so they can see they can do so many things they are all told by doctors that can't be done. Except they can. So much of this is acceptance, and attitude. Just believe in yourself.

    Bill 10/2013

  • Nanabeck
    Nanabeck Member Posts: 12
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    Welcome Rick

    Welcome and again sorry you have to be on here. Im the caregiver my husband is the patient. He also had base of the tongue cancer and 2 lymph nodes affected. He just finished chemo and radiation a month ago and had not much sickness from chemo just bad hiccups for 2 days after words. He had the sun burned neck, couldnt eat anything from the burn and pain in his throat. Lost alot of weight (60lbs), depression. If it comes down to it for you where you cant swallow from the radiation can I suggest you do get the feeding tube it will help to keep you healthy, my husband has refused it through the whole thing and is really struggling and sick now. Good luck to you Im more than happy to try and answer any questions you may have.