My radiation journey - Week 2

Just completed 10 treatments today. Seems to be going quickly. Ever notice the older you get, the faster time goes?

Anyway.

Sores are beginning to get serious. Still eating but getting a bit difficult. I'm noticing serious pain in my throat upon swallowing.

No real fatigue to speak of. Treatment is an hours drive in the afternoon so I feel a little drained afterwards.

Someone mentioned food tastes good up to the first or second bite. Then, not so much. Definitely noticing that making it discouraging to eat. Saliva is thickening. Mucositis will be here in about a week. Oh, joy.

Started taking Gabapentin for pain and swishing with a steroid rinse.

My weight has leveled off for now. I gained 10 pounds prior to treatment. A lot for a small guy like me.

Nurses doing a great job spraying me down and giving advice.

How in the world did I get cancer?! This sucks.

Please enjoy Memorial Day and remember those who gave some and all!

Comments

  • LiseA
    LiseA Member Posts: 266
    edited May 2016 #2
    Steven, 10 treatments down,

    Steven, 10 treatments down, 20 more to go? 

  • phrannie51
    phrannie51 Member Posts: 4,716
    Taste fatigue....

    ..thats when the first two bites taste like food, and the rest tastes like, well....no taste just texture.  Go to the health food store and pick up some L-Glutamine powder to mix with water.  If you're already swishing with the salt/soda mix, good....now you can swish and swallow the L-Glutamine....it can really help with the muscositis....and it might help ease the throat pain a little.  Also, when I was getting treatment they had some new stuff on the market called MuGard....it's a mouth sore preventative.  A bunch of us used it, and most of us slid through rads without sores.  Maybe ask about it???

    You're 1/3 done.....hang in there!!!

    p

  • stevenpepe
    stevenpepe Member Posts: 234
    edited May 2016 #4
    LiseA said:

    Steven, 10 treatments down,

    Steven, 10 treatments down, 20 more to go? 

    Yes. 20 more. I can't imagine

    Yes. 20 more. I can't imagine it.

  • Josephwc
    Josephwc Member Posts: 69
    edited May 2016 #5
    Eat eat eat even if it gets

    Eat eat eat even if it gets hard eat. I reached the end of the second and had a tough time. Also had a long drive with traffic in India. 

     

    Once you slow down your intake the radiation impact seems harder. I found very soft oatmeal and watery rice with eggs and tomato helped. I have a week left of treatment and I'm still eating. 

     

    I'm also asking that question. How did I get this?

     

    Take care.

  • stevenpepe
    stevenpepe Member Posts: 234
    My mouth and tongue are

    My mouth and tongue are really feeling it now. Still eating but realizing I have to go to softer, blander foods. Good news is swallowing is less painful than the mouth sores, which I think is most important.

  • wmc
    wmc Member Posts: 1,804
    You are doing really great.

    You are doing very good. You have the right attitude to get through this which really helps.  Never having Radiation or chemo, even though the doctors explained it at first as that was what they did consider, but lungs were way too bad to go that route so just surgery was my only choice. You might want to check the Superthread as I believe it has some suggestions on mouth sores. 

    Many never know the why they got cancer. There is no real reason other than you just did. I know why I did, or at least pretty sure. I was a smoker which they say smoking/tobacco is #1, Heavy drinking is #2, and HPV+ is #3, Acid reflex comes in about #4 and it is throat down to the esophagus, often we hear about GURD and almost nothing LPR which is the same basically, but goes higher up to the Larynx and often you never get heartburn but can taste it in the back of the throat and often have silent aspiration which is what I also had with the LPR. Now #5 is the one many get, and there is no known reason as to the why.

    My insurance assigned a case manager nurse to me so to help make sure I got everything I need and it is all in the network so we both save money.  She often asked me that I never went through the "Why Me" stage. I said I smoked and it really doesn't matter as to why. It only matters is what am I going to do to beat this. Just before my surgery they upped it to T4; N2; M0 stage 4 and the ACS shows that for the supraglottic which mine was down to 34% for five years. It did get better and I came out with T3; N0; M0 stage 3. which is 53% for the five year mark. Kinda funny that six months after I had my surgery the ACS lowered the odds down to 53% and was much more specific as where it was. I had found a different site and liked it much better and it added for being contained, the primary site is known, not in lymph glands and didn't metastasize, and that started at 63%, [it was more general and was just for all laryngeal cancer] and added up to around  75% was my guess so I went with those. You really can't go by what they write about the odds as it covers so many persons and so many variables it just isn't that accurate.  So in all reality mine are most likely above 80%. When they removed my larynx and the tumor was just above my vocal cords they got it and everything even near it. They just won't say cured until 5 years is up. All I get is NED which is great, but it is gone when I left the surgery room.

    Now you may, or may not hit a rough time during your treatment. Everyone is different and having such a positive attitude does really help. Only 5 thought I would make it, and we had 250 at work and two believed me when I said I would be back at work in 10 weeks. My job was talking and they just took my vocal cords. I had no doubts I would be back, and I was in 10 weeks and talking as well.  You just have to believe and give it your all.  Keep up the updates and just one day at a time, you are doing great, be proud of yourself.

    https://www.youtube.com/watch?v=sL-ZuyhSMEM

    Bill

  • stevenpepe
    stevenpepe Member Posts: 234
    edited May 2016 #8
    wmc said:

    You are doing really great.

    You are doing very good. You have the right attitude to get through this which really helps.  Never having Radiation or chemo, even though the doctors explained it at first as that was what they did consider, but lungs were way too bad to go that route so just surgery was my only choice. You might want to check the Superthread as I believe it has some suggestions on mouth sores. 

    Many never know the why they got cancer. There is no real reason other than you just did. I know why I did, or at least pretty sure. I was a smoker which they say smoking/tobacco is #1, Heavy drinking is #2, and HPV+ is #3, Acid reflex comes in about #4 and it is throat down to the esophagus, often we hear about GURD and almost nothing LPR which is the same basically, but goes higher up to the Larynx and often you never get heartburn but can taste it in the back of the throat and often have silent aspiration which is what I also had with the LPR. Now #5 is the one many get, and there is no known reason as to the why.

    My insurance assigned a case manager nurse to me so to help make sure I got everything I need and it is all in the network so we both save money.  She often asked me that I never went through the "Why Me" stage. I said I smoked and it really doesn't matter as to why. It only matters is what am I going to do to beat this. Just before my surgery they upped it to T4; N2; M0 stage 4 and the ACS shows that for the supraglottic which mine was down to 34% for five years. It did get better and I came out with T3; N0; M0 stage 3. which is 53% for the five year mark. Kinda funny that six months after I had my surgery the ACS lowered the odds down to 53% and was much more specific as where it was. I had found a different site and liked it much better and it added for being contained, the primary site is known, not in lymph glands and didn't metastasize, and that started at 63%, [it was more general and was just for all laryngeal cancer] and added up to around  75% was my guess so I went with those. You really can't go by what they write about the odds as it covers so many persons and so many variables it just isn't that accurate.  So in all reality mine are most likely above 80%. When they removed my larynx and the tumor was just above my vocal cords they got it and everything even near it. They just won't say cured until 5 years is up. All I get is NED which is great, but it is gone when I left the surgery room.

    Now you may, or may not hit a rough time during your treatment. Everyone is different and having such a positive attitude does really help. Only 5 thought I would make it, and we had 250 at work and two believed me when I said I would be back at work in 10 weeks. My job was talking and they just took my vocal cords. I had no doubts I would be back, and I was in 10 weeks and talking as well.  You just have to believe and give it your all.  Keep up the updates and just one day at a time, you are doing great, be proud of yourself.

    https://www.youtube.com/watch?v=sL-ZuyhSMEM

    Bill

    Thanks for the info and kind

    Thanks for the info and kind words, Bill. I'm trying to keep a positive attitude because there is simply no choice. What will be will be. Meanwhile, I'm wasting no time in getting the best care possible and taking advice from folks like you and nursing staff. I also have a high tolerance for pain and I try not to whine about all this.

    You seem to be doing well amd I love to hear success stories. At first, I was all about survival rates but quickly learned they are unreliable amd have nothing to do with your personal outcome. Being in good health, outside the cancer, increases my odds tremendously with this challenge. Besides, thinking about dying all the time is counter-productive. It will happen one day. Just not today.

  • swopoe
    swopoe Member Posts: 492
    edited May 2016 #9
    Steven,

    Steven,

    Keep up the good attitude. We also don't know why my husband got tongue cancer, but he is 4 months out of treatment and doing great. Ate BBQ chicken and steak off the grill tonight for dinner. Treatment was rough, but like you, he was young (only 40) and healthy at time of diagnosis. And other than the cancer, he stayed healthy through chemo and rads. His labs were good every week, and he made it through. Each day is a day closer to being done. Don't count the days you still have to go. Count the days you have completed. We printed out a calendar and crossed each day off. Soon you will see that calendar fill up with red X's on the days, and you will ring that bell and be done. I know you can do this. We are all pulling for you!

  • donfoo
    donfoo Member Posts: 1,771 Member
    head up

    Hi Steve,

    You are doing great. I mean your attitude, that is most important to get through the battle. Understanding the side effects and what has worked from folks here is an unrivaled benefit. There is more first hand practical experience here than the doctors and nurses have about getting through this on a daily basis. I do qualify the statement with "practical" experiences - Clearly the medical professionals know the best about treating you and having expertise to guide you through your treatments and recovery.

    What I always sought was might come my way and at least not be surprised when something came up. Didn't dwell on all the possible side effects but would be more prepared to identify a side effect as it came up then being able to research the board for practical remedies to help out. 

    Over the next couple weeks, likely you will experience more mouth sores, swallow issues, loss of taste, and just being plain worn out. Keep up the fluids. It is so common ppl end up dehydrated and ending up in ER for an infusion. 

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #11
    Steve,

    Steve,

    I am riding right behind you as I do my treatment. You're my inspiration.  

  • cardoza33
    cardoza33 Member Posts: 81
    Steve, 

    Steve, 

    I just finishd treatment 4 months ago.  I got my first clean scan back last month, no evidence of cancer at this point.   I had 2 chemo (cisplatin) and 27 rediation treatments.  I had a feeding tube and not sure I could have made it without it due to my mouth issues, but alot of people have and I hope you do.  I had no problems with swallowing when my mouth allowed for it.  I used topical lodocaine (sp?) to put on sores so I could eat.  I was able to maintain a very positive attitude through treatment.  My hardest time actually came during recovery.  Once you get done with treatment you think you will improve, but my, and most others, condition continues to deteriorate for weeks after treatment.  It takes months, so mentally prepare yourself for that and maintain the positive attitude.  I will tell you this, I am 4 months to the day from treatment ending and I am back to work (as an attorney-no hard labor) and out and about everyday feeling pretty darn good and cancer free.  I am 45 and blessed to have a second chance in my mind.  You will make it my friend, just keep up the positive attitude, come here for help and remember it will get better.  It will take a while, but it does get better.

  • LiseA
    LiseA Member Posts: 266
    Steve, how are you doing?

    Steve, how are you doing?

  • stevenpepe
    stevenpepe Member Posts: 234
    edited June 2016 #14
    LiseA said:

    Steve, how are you doing?

    Steve, how are you doing?

    I'm doing surprisingly well,

    I'm doing surprisingly well, Lisa. Number 14 will be this afternoon and I have lots of sores in my mouth but still eating my regular diet. Although most food tastes bland, I still get hungry and can imagine what it tastes like until it hits my mouth.

    I am using Gabapentin for pain and it's working nicely, I think, along with lots of rinsing, flossing and brushing.

    I am waiting for things to progress, such as Mucositis, which my doctors say will happen. So far, nothing yet and the worse pain is in my front gums when toothpaste hits it. Ouch!

    The sores on my tongue are serious but they don't hurt like I thought they would. Even my doctor is surprised after she saw them. That's good news to me but I'm holding my breath until things get worse. 

    How are your treatments going? You'll get through this one day at a time, like the rest of us.

  • LiseA
    LiseA Member Posts: 266
    Good to hear from you. Will

    Good to hear from you. Will go and read your comments on week three.   I have only finished four treatments since it was a short week, so no symptoms yet. I went out and bought myself some European dark chocolate the other day, and gelato.

     Figured I still have time to enjoy them, so why the heck not!  Been exercising, going to the museums here in Houston, and making this time into a mini vacation before the **** hits the fan, lol 

  • Craig_Griffin
    Craig_Griffin Member Posts: 52
    edited June 2016 #16
    Steven,Did they install a

    Steven,
    Did they install a feeding tube for you? All I can say about your question "why" is that I discovered after many hours spent in a cancer support group that for many sessions we went around the room with everyone speaking about this. The clinical pschychologist wanted us to get it out. It is not a good question because everyone got upset and we had no good closure. Also never blame yourself for getting it. Later on I enjoyed reading books by folks that are cancer survivors. The clinical analysis for why cancer? blends heredity, environment, toxicity, personal habits, eating habits, physio-psychological health, and location of residence.

    Of importance to me was that I not blame myself. Congratulations on your radiation journey. Always be positive and hopeful looking forward to what things might become for you in the future.

    -Craig   

     

  • stevenpepe
    stevenpepe Member Posts: 234
    edited June 2016 #17

    Steven,Did they install a

    Steven,
    Did they install a feeding tube for you? All I can say about your question "why" is that I discovered after many hours spent in a cancer support group that for many sessions we went around the room with everyone speaking about this. The clinical pschychologist wanted us to get it out. It is not a good question because everyone got upset and we had no good closure. Also never blame yourself for getting it. Later on I enjoyed reading books by folks that are cancer survivors. The clinical analysis for why cancer? blends heredity, environment, toxicity, personal habits, eating habits, physio-psychological health, and location of residence.

    Of importance to me was that I not blame myself. Congratulations on your radiation journey. Always be positive and hopeful looking forward to what things might become for you in the future.

    -Craig   

     

    Hi Craig, no feeding tube.

    Hi Craig, no feeding tube. Doctors don't recommend it and I am concentrating on swallowing as much as possible. So far, I am still eating regularly and can tolerate most foods. I still have 19 more sessions so I am anticipating rough times ahead.