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Let's Talk Radiation

Re: Let's Talk Radiation

Posted by Lealea on Jul 14, 2020 10:21 am

Essjay‍ sorry to hear about lung damage but great to hear about your proactive running to get things strong again!

Day two for found three today.  So far little nausea if any...I think it hits more towards end of today.  No allergic reaction either...so thinking Grastofil might be culprit which I start tomorrow ☹️  

Being proactive in meds and trying to drink more liquids this time.  Still feel like I got my brain...but that usually goes too soon.  Hate how “I” disappeared for a while.  Took longer last round too.  Oh well!  One more round after this! 😊 end in site!


Re: Let's Talk Radiation

Posted by edd on Jul 14, 2020 11:19 am

I had 35 rounds rounds of radiation to my throat that I just completed on Jan 1st/20.  I was diagnosed with base tongue oropharyngeal squamous cell cancer. The sessions only lasted about 15 min and were a breeze getting through them.   They would put a pre-fab facemask on me and secured it to the table to prevent movement during the session.  If you are claustrophobic, there may be a problem.  Near the end at about 25 sessions in, I could feel my skin about my neck starting to burn.  It was very important to moisturize several times daily to prevent burning and peeling.  I did and came out ok, I seen other's about the waiting room who I assume didn't and you could see the damage.  The other but most important thing that happened to me was that it really affected my swallowing, I couldn't anymore.  Thank God I got my feeding tube before hand for that was a life savior. So, 3 months post radiation, I am cancer free, but I still can't swallow.  So frustrating!!!   My radiation doctor looked at it and said it looked more like 4 weeks post radiation treatment rather than 12 weeks. It affected me more than others.  Another few weeks and hopefully things will get back to normal. The issue that I have is the valve that opens and closes the channels to my lungs and stomach is not doing it 100%, so I can take liquids into my lungs and air into my stomach.  Hopefully this will rectify itself so I can start eating normally again.  For those using a feeding tube, I strongly recommend a gravity bag to feed yourself with.  At first I was doing it manually which would take forever and I was not getting enough food or fluids which caused me to dehydrate and lose 20lbs.  This was not suggested or given to me at first, but only after severe dehydration was it given to me.  It's so simple and convenient.  I put two 250ml cartons of isosource fibre 1.5 into the tube along with one 500ml bottle of water four times a day.  This has kept me hydrated and weight consistent.

Re: Let's Talk Radiation

Posted by ashcon on Jul 15, 2020 5:18 pm

What a great explanation of what you went through. And great advice about the feeding tube.
My cousin's wife underwent surgery and radiation for cancer on her tongue. This was about 5 years ago.  I don't think she was diligent in staying on top of what she needed to do to recover and to this day, can only take down fluids.  And they're not the healthiest type of fluids (a fair amount of alcohol is part of her daily diet!)  Needless to say, she's lost a lot of weight that I don;t think she'll ever recover.

So glad you are staying hydrated and keeping your weight consistent.
What will be your first meal when you can eat normally again?
---- "Nothing ever becomes real till it is experienced." ----

Re: Let's Talk Radiation

Posted by edd on Jul 16, 2020 9:56 am

What will be my first meal when I recover?  Funny you say that.  You know, when you watch television there is at least one food commercial at every break throughout a show!  I only know this for I am starving for real food and low and behold what's playing in front of my face every 8-10 min. Lol.  That being said, I would really like to sink my teeth into a medium rare prime rib from the Keg.  But, right now during Covid, they're closed and no one else is getting one either, so I feel better.

Sorry to hear about your cousin's wife. I wonder if there are other professionals that can help her?   I just had an appointment with my radiation doctor last Tuesday and explained to him about my difficulty swallowing.  He put me in touch with a Speech Therapist immediately who came to visit me during our appointment.  She gave me a throat exercise to do temporarily until a full assessment can be done on me.  She was quite assuring that I can overcome this.  Yeah.  I just have to wait and be patient.  Can't say enough of the hospital staff at Princess Margaret, they are a God's send.

Re: Let's Talk Radiation

Posted by Lacey_adminCCS on Jul 16, 2020 10:30 am

edd‍ and ashcon‍ 

This made me think of a friend's Dad who had Nasopharangeal cancer. He was eating by feeding tube and would watch the food network during his feeding times. For my Dad he didn't like to look at food or watch people eat,when he was on a  feeding tube, it really bothered him.

It makes you realize how many of our rituals involve food when someone you love can't eat!


Re: Let's Talk Radiation

Posted by User1987 on Jul 28, 2020 9:55 pm

My mom has stage 4 adenocarcinoma that has spread to her T5 and T10 of her spine. She had 5 rounds of radiation on consecutive days (July 15th to July 19th) on her spine which lasted about 10 minutes each session. The doctor explained that the radiation therapy was to help preserve any nerve damage and help with her pain. Before the radiation therapy, she described her pain level at a 6/10. It has been a little over a week since she’s finished her last round of radiation and today her pain is the worst it’s been at a 8/10.  This was her first round of radiation and we will be meeting with a medical oncologist on Thursday to discuss treatment of her cancer. But I was wondering if increased pain that many days after the radiation is normal? If it is normal, is there a time frame where it gets better? Or is it an indication that maybe the radiation did not work as well as expected at shrinking the tumor? 

Re: Let's Talk Radiation

Posted by Cynthia Mac on Aug 1, 2020 8:30 am

User1987‍ , I just saw your post today. I don’t know a lot about radiation, but I understand that the effects of it tend to accumulate, and they can peak after treatment has ended.

How is your mom’s pain level over the last day or two? Has it subsided at all? 

If it hasn’t, I encourage you to call the hospital to get some medical opinion and advice.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Talk Radiation

Posted by Nightowl on Aug 5, 2020 7:13 pm

i am thrilled to report that my 16 rounds of radiation ended today.  I had lumpectomies and ancillary dissection surgeries last September and November, followed be chemo from late December to this May.  The end of radiation (through July - early August) feels like a huge milestone.  My medical oncologist wants to continue on with Zolodronic acid and Letrozole sometime soon, but today I will celebrate being treatment-free for a bit.  Yay!!!

Re: Let's Talk Radiation

Posted by ashcon on Aug 6, 2020 9:05 am

Congratulations Nightowl‍!
I remember being very happy to be done treatment, but was also surprised that I felt quite discombobulated (at least initially) when there was no longer the routine of trips to the hospital and visits with doctors! 
Did you get to "ring the bell" at your cancer centre? 
If not, feel free to ring this site's Virtual Bell and share your success story there! 

Congratulations again, and I hope you fill your days with healing thoughts and activities now. ❤️😁
---- "Nothing ever becomes real till it is experienced." ----