My radiation journey

Options

Hello everyone,

I posted earlier about starting rads with no feeding tube. I started week #1 of 6 on May 16th and thought I would journal my progress here with you.

So far, the first 5 treatments have been largely uneventful. I am experiencing the onset of dry mouth and a slight loss of taste. Water tastes a little like metal, too.

No feeding tube. Hoping to God I won't need it. So, eating as much as possible. Swallowing a lot and performing extra oral care in hopes of staving off infection and all other issues.

I will post an update after each week. I welcome all advice and suggestions. This forum is very helpful so I thank you all.

 

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    Options
    Steven

    Thank you for taking the time to post your weekly experiences. Hopefully, you will make it thru this journey without the PEG Tube like others here. I had no choice as part of my tongue was removed, so PEG Tube was inserted right away. After my tongue healed up and Trach was removed, I was allowed to start with soft foods and work back to a normal diet again. Soon after, I started Radiation treatments.

    One suggestion that you will probably hear from others as well is to stay Hydrated, fluids, fluids and more fluids. Learn the simple pinch test on the back of your hand. Also, stay ahead of any discomfort in your mouth and throat. Yes the food will taste like cardboard and the fluids like aluminum cans, but ignore that and get that nutrition in. I did not lose my sense of smell, so that helped me a bit before I ate.

    My Best to You and Everyone Here

  • LiseA
    LiseA Member Posts: 266
    Options
    MarineE5 said:

    Steven

    Thank you for taking the time to post your weekly experiences. Hopefully, you will make it thru this journey without the PEG Tube like others here. I had no choice as part of my tongue was removed, so PEG Tube was inserted right away. After my tongue healed up and Trach was removed, I was allowed to start with soft foods and work back to a normal diet again. Soon after, I started Radiation treatments.

    One suggestion that you will probably hear from others as well is to stay Hydrated, fluids, fluids and more fluids. Learn the simple pinch test on the back of your hand. Also, stay ahead of any discomfort in your mouth and throat. Yes the food will taste like cardboard and the fluids like aluminum cans, but ignore that and get that nutrition in. I did not lose my sense of smell, so that helped me a bit before I ate.

    My Best to You and Everyone Here

    Hi, I hope you're doing well.

    Hi, I hope you're doing well.  My radiation journey will begin on May 31st for six weeks. I've been in a panic about the side effects, but trying to learn all I can and prepare myself.  Your journey will be very helpful to me and others.

    Marine, what is the pinch test for? 

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    edited May 2016 #4
    Options
    LiseA said:

    Hi, I hope you're doing well.

    Hi, I hope you're doing well.  My radiation journey will begin on May 31st for six weeks. I've been in a panic about the side effects, but trying to learn all I can and prepare myself.  Your journey will be very helpful to me and others.

    Marine, what is the pinch test for? 

    Pinch

    Hi Lisa, 

    The pinch test on the back of your hand is a simple way of measuring if your body has enough fluids. You can pinch and pull up slightly the skin on the back of either hand so you have a little mountain of skin. Release it and see how long it takes for the skin to return to normal. If it returns slowly, you may be Dehydrated and need fluids. A simple test you do on yourself anywhere you are.

    It is recommended that we take in 64 ozs of fluid daily, but that can vary depending on our med's or activity. When I had my PEG Tube and fed myself with only nutrition cans, I counted the 8 oz cans as fluid as well, I was suppose to take in 8 a day which I never made, usually 7 was max. I did have to flush the PEG Tube with 2 Syringes of water before and after each feeding, so I was pretty well hydrated during my treatments. Some that get Chemo and Radiation have a rougher time staying Hydrated. I had Radiation only as Chemo was a back-up for me in the event of reoccurance which has not happened.

    My Best to You and Everyone Here

  • wmc
    wmc Member Posts: 1,804
    Options
    So far so good.

    Doing well so far and I do hope it stays that way.  It affects many different from what I have seen. Some have it so much better and others it is really rough.  Thanks for the update.

     

    Lisa:   As far as hydration and how much to drink or take in, the rule of thumb is half your weight in ounces. If you weigh 100 lbs it is 50 oz, if 200lbs you need 100 oz of water. Then there are some meds that might require you to do more or less. You can take to much water and get very sick from it. My wife has chronic renal failure and has to also take blood thinners. Now this adds to her condition but, she was drinking 80 oz of water a day thinking this is good and helps flush the kidneys, per what she has read over the last 15 years she has had this. Well, she started to feel bad and it got much worse so she went to her doctor and had lots of blood work. Then the doctor called and said you must get to the ER ASAP I have faxed them. Your blood sodium is dangerously low and life threating. She was drinking too much water and diluted her sodium too much to where she could go into a coma, have severe brain swelling, and just die. All because she drank too much water. She is fine and we got very lucky, but had to stay in the hospital to bring up the sodium up slow or it could be as dangerous. She weighed 114 and can only take 50 oz a day.

     

    Bill

  • SusanUES
    SusanUES Member Posts: 125
    Options
    Glad you posted...

    Been wondering how you are doing, Steven.  First two weeks should be fine, little to no side effects.  Your MSK oncologist will start you on Gabapentin beginning week three.  I found the middle two weeks a bit rockier but nothing I couldn't deal with.  Rads begins kicking your **** around week four.  You can do it, Steven!  Just power through.  I worked every day of my 33 treatments and celebrated my finish the following day by going to the theater in the afternoon and then meeting a friend at a jazz club that night.  After that, had to stay home for a week because of fatigue and was pretty miserable for the next two months but that passed.  Keep on truckin' and message me if you need anything.  Advice: Start planning a nice vacation with your girlfriend now...you'll be well enough to travel by Fall and it will be something to look forward to.  Maybe leaf peeping in New England or a trip upstate.  I found that making plans really kept me from falling into the pit and made me look beyond what I was going through at the time.  Cheers!

  • stevenpepe
    stevenpepe Member Posts: 234
    Options
    Susan, funny you mention

    Susan, funny you mention Gabapentin, I just picked up my script for it. Was your oncologist Dr. Geldblume, by chance? How about issues with this drug? Did it help with pain?

    I have been looking into taking my girlfriend away but not sure when. She has been my rock and an absolute angel during this tough time. She certainly deserves a nice break from all of this. Thanks for the advice. I am so not looking forward to the weeks ahead.

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited May 2016 #8
    Options
    Normal

     

    You are normal in your progress, the first two weeks you hardly feel anything but by the 3rd week and on you will feel the effects a lot more. Just keep your focus and you will continue to do great. Keep posting and letting us know how you are doing.

     

     

     

    God Bless

     

    Tim   

     

  • swopoe
    swopoe Member Posts: 492
    Options
    Keep checking in. You are

    Keep checking in. You are doing great so far. Keep doing what you are doing. Eat and drink as much as you can. Try to stay active while you can. It will keep your mind off things. My husband finished his rads in January. We are going on vacation in 3 weeks. Much deserved. You and your girlfriend will get there too. 

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

    Good to hear from you. How many weeks so far? Is this week 2?

     

  • SusanUES
    SusanUES Member Posts: 125
    edited May 2016 #11
    Options
    Hollah back!

    My oncologist is McBride (love love love) and my rads team was Heather & Group (superb).  I did not think the Gabapentin helped much (if at all) and I was also neutral on the script for the mucositis.  However, what really helped was Liquid Oxy (make sure you get it in liquid form because the pills will become very difficult to swallow as you move ahead with your radiation).  Your doctor will give you a script and you can have it filled downstairs at the Pharmacy.  I did not take it during the day since I worked but at night it was a real blessing.  Took away the pain, helped me sleep too. 

    Steven, I have two Magic Bullets (kept one in the office and one at home)...would you like one?  The MB is small, compact and you can mix your Scandi/Ensure/whole milk/ice cream power shake in one minute flat.  I work in midtown and I live quite close to MSK so would be happy to make arrangements to hand it off to you.

    Other tips: buy a baby toothbrush...the mouth ulcerations will make brushing difficult and I found this size was perfect.  Use straws to direct water over the rough patches in your mouth during recovery...put the straw way back and swallow.  Buy George's Aloe (Vitamin Shoppe will deliver and also has it in stock).  It is completely tasteless and pure (like drinking water). Everyone who has gone through post-rads healing will tell you the first sip in the morning is the hardest.  George's Aloe was my go to drink...it soothed the ulcerations and coated my throat.  Plus lots of health benefits.

    I know you are scared...and with good reason...but everyone is here for you.  We've done it and you will, too...count on it! I am exactly a year ahead of you and life is good again...changed but good.  Re the trip with your g/f, I finished up Memorial Day and was ready to travel again by the Fall.  My pal Ron and I took a trip on the Mississippi River Boat Queen and had a wonderful time...I wasn't able to eat perfectly or much, but the dining room was no problem.  Do something local or further away...but do it...you both will benefit! 

     

     

  • LiseA
    LiseA Member Posts: 266
    Options
    Susan, I am making notes of

    Susan, I am making notes of your recommendations for my journey as well.  Thanks. 

  • stevenpepe
    stevenpepe Member Posts: 234
    Options
    SusanUES said:

    Hollah back!

    My oncologist is McBride (love love love) and my rads team was Heather & Group (superb).  I did not think the Gabapentin helped much (if at all) and I was also neutral on the script for the mucositis.  However, what really helped was Liquid Oxy (make sure you get it in liquid form because the pills will become very difficult to swallow as you move ahead with your radiation).  Your doctor will give you a script and you can have it filled downstairs at the Pharmacy.  I did not take it during the day since I worked but at night it was a real blessing.  Took away the pain, helped me sleep too. 

    Steven, I have two Magic Bullets (kept one in the office and one at home)...would you like one?  The MB is small, compact and you can mix your Scandi/Ensure/whole milk/ice cream power shake in one minute flat.  I work in midtown and I live quite close to MSK so would be happy to make arrangements to hand it off to you.

    Other tips: buy a baby toothbrush...the mouth ulcerations will make brushing difficult and I found this size was perfect.  Use straws to direct water over the rough patches in your mouth during recovery...put the straw way back and swallow.  Buy George's Aloe (Vitamin Shoppe will deliver and also has it in stock).  It is completely tasteless and pure (like drinking water). Everyone who has gone through post-rads healing will tell you the first sip in the morning is the hardest.  George's Aloe was my go to drink...it soothed the ulcerations and coated my throat.  Plus lots of health benefits.

    I know you are scared...and with good reason...but everyone is here for you.  We've done it and you will, too...count on it! I am exactly a year ahead of you and life is good again...changed but good.  Re the trip with your g/f, I finished up Memorial Day and was ready to travel again by the Fall.  My pal Ron and I took a trip on the Mississippi River Boat Queen and had a wonderful time...I wasn't able to eat perfectly or much, but the dining room was no problem.  Do something local or further away...but do it...you both will benefit! 

     

     

    Susan, you are so kind. I

    Susan, you are so kind. I also have the MB and I love it. Your tips are very handy, as well as the advice from others. I am progressing well, paying special attention to oral hygiene and eating as much as I can. I will post an update over the weekend. Happy Memorial Day! Never forget the true heroes out there!

  • SusanUES
    SusanUES Member Posts: 125
    edited May 2016 #14
    Options
    A few more tips that worked for me...

    I bought men's cheap cotton t-shirts (oversized) and cut out the neckline.  Nothing fancy, just take shears and cut away the border, down about two or three inches so that the neckline is loose, almost to your shoulders.  Serves three purposes: (1) the gunk you use to coat your neck is great but messy so this decreases staining; (2) as you develop radiation burns or redness on your neck, you can easily pull the tee over your head without rubbing the sore spots; (3) toss them all when done.

    Get a good pill crusher.  I got one cheaply on Amazon (the type which really pulverizes pills).  I was unable to swallow pills for months because of mouth ulcerations and because rads nuke the nerve endings in your mouth (the is all temporary, it will pass).  Just take the pill, crush it, put the powder in a Dixie cup with a little water, swirl to mix and swallow.

    You may be different but I could only take liquids lukewarm...nothing hot or cold.  I would store my ice cream in the fridge section, not the freezer, so it would be melty and I could just mix it in the MB with Ensure, Scandi, whatever I needed to keep the down and my weight up.

    Haven't thought about these little things in awhile but they sure did help at the time!

  • rcaulder
    rcaulder Member Posts: 70
    edited May 2016 #15
    Options
    Flouride

    Steven, you may want to ask about flouride trays.  Teeth take a beating during radiation. The extra flouride helps keep them mineralized.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited May 2016 #16
    Options
    rcaulder said:

    Flouride

    Steven, you may want to ask about flouride trays.  Teeth take a beating during radiation. The extra flouride helps keep them mineralized.

    I've heard that. My staff

    I've heard that. My staff prescribed flouride toothpaste and just advised to use that. I have a good history of oral care so this stuff makes me even more diligent.

  • LiseA
    LiseA Member Posts: 266
    edited May 2016 #17
    Options
    How are you feeling? Is this

    How are you feeling? Is this the end of the first week?

  • stevenpepe
    stevenpepe Member Posts: 234
    edited May 2016 #18
    Options
    LiseA said:

    How are you feeling? Is this

    How are you feeling? Is this the end of the first week?

    Yes. I am going to start a

    Yes. I am going to start a new post for each week.

  • LiseA
    LiseA Member Posts: 266
    Options
    I'll be following you closely

    I'll be following you closely. Mine begins next week.  Good luck with everything. Hope you're one of the lucky ones to come out with the least amount of symptoms.