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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

edd
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

ashcon‍ 
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_Moderator 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!

Lacey

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." ----

Re: Let's Talk Radiation

Posted by Dodbob on Aug 21, 2020 5:38 pm

I had radiation on the top part of my leg,  in the back 33  treatments. The odds of this type is likely nobody here had the same, I sailed through the radiation it’s the almost 2 weeks afterwards it’s just getting more hot at times, dry. No infection so far.👍

Re: Let's Talk Radiation

Posted by Lianne_Moderato on Aug 21, 2020 6:15 pm

Hello Dodbob‍ 

I can't guarantee you will find someone with the exact same diagnosis and treatment but i am going to tag a few members from this post to have them share their experience post radiation and what they found helpful. If you read further up in this discussion you may find some nuggets of information that could help you.
starshine1ca‍  KerriKerri‍  ashcon‍ . Would you be able to share how your skin reacted to radiation and what if anything ,  you did to calm the type of side effects that Dodbob‍  is experiencing? Any member is welcome to join in and share as well.

Thank you

Lianne

Re: Let's Talk Radiation

Posted by ashcon on Aug 22, 2020 11:47 am

Hi Dodbob‍ 
How are you? 
Like, you I used the saline soaks as a way to soothe the skin, both during and after radiation.  Unlike you, I had breast cancer, but perhaps radiation is radiation, regardless of the type of cancer, yes?
The feeling of increased "hot and dry" is probably the result of the skin 'still cooking".  I was told that would happen for about 2-3 weeks after radiation was done.  So, in addition to the saline soaks, I used a water-based moisturizer like crazy on my skin.  Like 4-5 times a day.   It's been 2 years since  I finished radiation and I still slater it on 2x/day.  And I do everything I can to stay out of the sun!
Jojo4‍ , who went through radiation for soft tissue sarcoma, may have something to add to this conversation.  😁

 
---- "Nothing ever becomes real till it is experienced." ----

Re: Let's Talk Radiation

Posted by orchid*lover* on Aug 22, 2020 1:16 pm

Essjay‍ I am going thru radiation treatment, 16 of 20...4 boost treatments and 16 regular ..so far skin is like a moderate sunburn and fatigue isn’t as bad as I expected at this point although I am getting a lot of rest and trying to eat well! I am scheduled to go back to work 10 days after so hoping that will help me recover a bit! I’m a dental hygienist so I need to be rested mentally too! I’m finding saline compresses and Aveeno helping a lot for relief! You’re finding the effects lasted for quite some time?

Re: Let's Talk Radiation

Posted by 2Awesomekids on Aug 27, 2020 8:17 am

Looking for advice, finished 16 regular and 4 booster radiation treatments to the left breast last week.  The skin under my breast has blistered and is now peeling.  I have been using polysporin but it's not helping.  The pain is awful, every move hurts.  :( 

Re: Let's Talk Radiation

Posted by Essjay on Aug 28, 2020 8:08 am

2Awesomekids‍ congrats on completing radiation! 🙌

Its tough - our skin keeps cooking for a few weeks after treatment. I was very read and the skin was itchy and broken in a small place. I used a cortisone cream on the advice of the nurse, and a lathered the moisturizing cream on thick. It was sore, everything burned, clothes hurt, seatbelts hurt etc. Didn’t wear a bra for a couple of weeks. It did settle though, without significant issue. 

if you have any worries, your oncologists nurse is the person to call, they will give you advice on what to do and get you seen by the oncologist if necessary.

Hope it feels more comfortable very soon. Essjay 
Triple Negative Breast Cancer survivor since July 2018

Re: Let's Talk Radiation

Posted by supersu on Aug 28, 2020 10:16 am

2Awesomekids‍ 

YEAH! you are done radiation therapy - that is an accomplishment.

I thought I had gotten thru unscathed until.....red/hot/burning/BURNING/blisters/open wounds/ -- cripes---worst about 2 weeks after my last zap--took about 3 weeks to resolve.  At one point I never thought I would have a normal looking breast again - it was SO RED, SO SORE I honestly couldn't believe it!  I have shed at least twice completely.  

Now, approx 6 weeks later, I am left with a 'tanned' breast and no lasting marks etc.  

The radiation therapists gave me some gel called Intrasite Gel to apply to any open sores - this stuff was magic.  I was told to be 'very careful' and if I felt like it was ever infected, to act on that.  I did have a tele consult at one point, but never felt the need to go to hospital, (deep in the middle of COVID may have influenced me also.) ;)

Mine was very painful, but not VERY painful.  If you think it might be infected get an RN to examine you - last thing you need is more trouble.

Hang in there girl......our bodies are amazing and somehow come back from this crazy!!!
Take good care, and call in the troops if you need to.  They are the experts and may have something to help you along.

cheers/hugs
su
 

Re: Let's Talk Radiation

Posted by ChildofGod1 on Aug 28, 2020 10:52 am

I just wanted to say that as of August 24th, I finally completed my Radiation!!!!  on y whole breast. I am very happy about that for sure.  I RANG THE BELL  :) and the nurse took some pics for me.   But now i wonder  if i am really cancer free as i asked how do they tell and the answer:  just have to wait and see and do all my follow ups and breast scans etc.
Not really super reassuring to me.  Is there not a way for them to say i am cancer free  right now.    Well i decided to say and believe i am now Cancer free and enjoy that feeling.
The last treatment was the worse for me as i turned bright red and have more pain and that i did on previous times. Am super itchy  I did the once a week for 5 weeks with a higher
dose of radiation and used Cavilon spray 3x a week throughout the 5 weeks and have to continue for another 2 weeks.  I believe it has helped me a lot in keeping
my skin.  I was told that it could get worse 2-3 weeks after last treatment so i am praying that i will not break out into sores or anything like that, but only time will tell.  oh and also
told to wear loose tops and no bra for the next 3 weeks or until i feel healed n better.
 For all going or will be going through radiation...Luv Hugs and Blessings for quick healing and recovery.
   
ChildofGod
 

Re: Let's Talk Radiation

Posted by Lacey_Moderator on Aug 28, 2020 11:16 am

ChildofGod1‍ 

Congrats on finishing radiation! I hope the redness subsides soon.

Finishing treatment can sometimes come with a mix of emotions. Often times thoughts like you mentioned creep in. Some people find it helpful to focus on what they know to be true today. As of now you have completed all of the necessary treatment to be cancer free. Going forward you will have your follow ups and will be aware of your body. 

We have a great booklet you can download it or read it online here: Life After Cancer Treatment

Thanks for sharing your news with us! Please feel free to share your experiences it really helps others on the site.

Lacey

Re: Let's Talk Radiation

Posted by triplepos on Sep 10, 2020 11:16 am

I recently had 25 treatments of radiation.  From day 1 I used lubriderm (recommended) by radiologist.  I lathered this on 4 times a day and went through 3 bottles!  I never burned, Around the 16th treatment, one radiologist mentioned that it was a little pink under the armpit, when i looked in the mirror I seen the pink spot.  I lathered even more, leaving a thick blanket on when I went to bed.  I never burned or peeled, It worked very well and now I am on this for life, I don't have to look for any other lotion.  I have purchased a 4th bottle and use it everywhere.  I have become very soft skinned  lol.  I highly recommend this lotion to everyone who is going into radiation so that you do not burn.   Do not use it sparingly, put a very thick layer all over the radiation site. It will allow you to heal well and come out with very soft skin 

Re: Let's Talk Radiation

Posted by Faithnstrong on Oct 6, 2020 10:44 pm

My mother has Squamous Carcinoma (SCC) in oral cavity, she  had surgery in Aug 2020 and started her radiation treatment  on Oct 5. She just finished her second treatment , and already has some redness on her neck. I am surprised 5 mins treatment can make mom has side effect so quickly. 

I read about it's important to keep hydrated and put lotion on. I  keep putting aquaphor  and Glaxal cream on her.  I am really worried about the side effect, as mom is 80 years old already. I am hoping to support her as much as possible, as I know it's not easy for her.