My radiation journey

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.  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? 

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

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. 

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! 

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

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

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.