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Let's Talk Radiation

Let's Talk Radiation

Posted by Lacey_adminCCS on Mar 13, 2018 12:53 pm

How many radiation treatments did you have?
What part of the body?
What was the most challenging part?
What would you recommend to others?

Re: Let's Talk Radiation

Posted by Yogi on Mar 13, 2018 2:08 pm

My Brain is going for his planning CT scan tomorrow, he'll get 5-10 shots. We know next to nothing about radiation. She will be aiming at the tumor in the lung, the space between the lungs and maybe up the side of the next. Dr did warn us about trouble with his esophagus, but other than that not sure what to expect. I'll be watching this post for sure.  Just as we got use to the Chemo world, that was taken away and replace with this new world of radaition! But we'll learn soon enough!

 

Re: Let's Talk Radiation

Posted by ACH2015 on Mar 14, 2018 8:52 am

28 radiation treatments

Left inguinal region (groin / pelvis)

Most challenging part - the driving to and from = 200 km per treatment.

I recommend preparing for the worst and hoping for the best. Even my radiation oncologist was amazed at how well the skin held up. Drink lots of fluids and use the moisturizing creams etc.... as recommended. We will all react differently and in the end - we will all get through it. Short term pain for long term gain.

Re: Let's Talk Radiation

Posted by merry on Mar 14, 2018 9:13 am

Over the past 20+ years of having lung cancer I have had 2 types of radiation. One was proton beam therapy. I had 4 consecutive days of that. Each session was 1 hour. That was 4 years ago. This past year I had Photon Radiation. That was for 5 days, 2x a week for 5 times. Each session was 20 minutes.
One challenging part was laying on a table for 1 hour. The other challenging thing was wondering if it would work. They both killed the cancer tumor.
I would certainly recommend these.

Re: Let's Talk Radiation

Posted by Lacey_adminCCS on Mar 14, 2018 9:22 am

Yogi‍ 

This resource may help smiley

Radiation Therapy: A guide for people with cancer

Keep us posted!

Re: Let's Talk Radiation

Posted by Lchalmers on Mar 14, 2018 9:32 am

Lacey_adminCCS‍ Breast Cancer DCIS
Radiation Therapy,  30 Gy in 5 daily fractions of 6 Gy.  I am part of an OPAR study for women with invasive carcinoma of the breast with negative axillary nodes or Ductal Carcinoma In-situ (DCIS). This study is focusing on fewer treatments with higher doses, overall you get the same amount of radiation but in 5 treatments instead of 14. They are looking at Cosmetic deterioration, Radiation toxicity, Ipsilateral breast tumour recurrence, Disease free survival and Overall survival.  This is a five year study which I go back for appointments once a year ofr 5 years.
The most challenging part was the travel back and forth even though I did not travel far the wether was awful during this time, nothing worse than arriving at your appoinmetn stressed because of traffic and weather.
I decided to take part in this study to help women that have to go through this in the future, if I can help make radiation treatment easier on just one women then it was wirth it.

Lindsay

Re: Let's Talk Radiation

Posted by LPPK on Mar 14, 2018 4:37 pm

I had 16 radiation treatments on my right breast and part of the arm pit. This took almost 5 weeks because it was during December and January and they don't do radiation on weekends or on holidays
Challenges: 
*the daily trip to/from the hospital (overall about 3 to 3.5 hours out of each day) in winter weather
*the burned and peeling skin after the treatment was over
*the fatigue

Recommendations
*keep putting cream on the area (I am 2 months post treatment and my skin is still suffering from dryness), I use Glaxal cream
*keep hydrated
*rest, take cat naps, go to bed early

Re: Let's Talk Radiation

Posted by Yogi on Mar 15, 2018 6:15 am

merry‍ Brian said between the proton beams and photon beams he may come out of the radiation room in a cape like superman!!  I forgot to ask what kind of beams, should I know?  He had a cast made yesterday for his face, neck and chest, that was interesting (so he said) !  We are waiting  now for the diagnostic CT scan and the first radiation appointment.

Lacey_adminCCS‍ , thanks for the info link! and ACH2015‍ since June last year we live with preparing for the worse and hoping for the best, that and learning to sit down shut up and wait!

Re: Let's Talk Radiation

Posted by merry on Mar 15, 2018 7:33 am

I felt the same way - fly me away!!  There is a difference between Photon (not particles- just pure light energy) and protons-which are just that, protons. Here is a link that goes into more detail. http://www.massgeneral.org/radiationoncology/BurrProtonCenter.aspx. This is where I had my proton therapy. And a different room for the photons at MGH. I too had a form made and at that time technicians also "mapped" where the beams should hit. I had tatoos of dots placed on my chest. They blend in well with my moles. These tatoos were used for the photon radiation too. The doses are different and set by the radiologist. They seem to vary from day to day. Have you said what kind of cancer he has? Please keep me up to date!!
 

Re: Let's Talk Radiation

Posted by Elsie13 on Mar 15, 2018 3:25 pm

I had 25 radiation treatments to the pelvis. I was on the little bed for around 10 minutes.  The actual radiation was 90 seconds or less. I know this because a red light came on : BEAM ON. It's called External Beam Radiation, that's all I know. 
      I was very worried because they wanted me to have a full bladder.  I had developed over active bladder 30 years previously, during my first pregnancy.  So the radiation oncologist said 'just do what you can.'  So I drank about 350 mls of water, around 30 minutes ahead of time.  
    So I would recommend to others, if you are worried about some specific thing, and maybe it's embarrassing, ask anyway! Ask the doctor, and/or the technician. 

Re: Let's Talk Radiation

Posted by ashcon on Mar 15, 2018 4:41 pm

Hi there -

I am booked for 25 radiation treatments and am half-way through right now. I finish on April 6th.
I had a bilateral mastectomy and 25 nodes removed from right underarm.  The radiation is targeted to the right breast, right underarm and right collarbone area. 

I have been given the Mepitel film as part of my treatment..  It's relatively new and not used in all cases of radiation, but is supposed to help with skin reactions.
So far, there is just slight "pink-ening" of the skin under the film.
Is anyone else out there using the Mepitel film?
I find bits of it need to be patched up by the Radiation Technicians every 3-4 days as sections peel off.  I find it peels off more readily after going to the gym, or working up a sweat, or after having a shower.

The most challenging part has been the lymphadema that has shown up (right arm and shoulder) since starting radiation.
I was told that even though I am slender and fit, I was at a high risk for lymphedema because of the surgery (lymph nodes removed) which was followed immediately by radiation. 
The pain and discomfort has been terrible - I've had to revert back to taking some T3's left over from my surgery days to get some sleep at night.
I found some YouTube videos on some exercices I can do (which are helping!).  And I see the Lymphedema specialist next week.  Hoping she can help!

Re: Let's Talk Radiation

Posted by cancertakesflight on Mar 24, 2018 8:14 pm

This discussion is very timely, especially since I am posting right below @ashcon. I just wrote and published a blog post about radiation and the potential burning and pain. @ashcon is of several women featured in my post. If you are interested in reading it, you can find it here. http://www.laughterandcancer.com/blog/part-4-radiation-therapycancers-sunburn.html

As for my treatments, I have a total of 25 treatments over the course of five weeks. I live about 20 minutes away from the place where I had my treatments. Right after the treatments it was about a 10 minute drive to work. So the timing of my appointments (7:30 am) actually worked quite well. 


My biggest issue was that they always seemed to have trouble getting me into position each morning and, even though I was the first appointment of the day, I always started late. I can't imagine how late other appointments were that came after me.

I started burning near the end of my treatments and peeled after my treatments were over. I had one black piece of skin that was under my left armpit and I stretched enough during yoga that the final piece of skin came off. This was years after my chemo ended. Yes, very weird.

Debbie

Re: Let's Talk Radiation

Posted by LPPK on Mar 29, 2018 4:47 pm

I just got home from my 3 months post radiation visit with my radiation oncologist.  She raved about how wonderfully my skin had recovered and said she couldn't even tsee a difference between the radiated and no radiated skin. I am not a quick healer tso I believe I need to give credit to the red light therapy I had.  Even my surgery scars have healed beautifully.

Re: Let's Talk Radiation

Posted by ashcon on Mar 30, 2018 9:40 am

Hi LPPK
That's great news - congratulations!  How did you hear about red light therapy? Did you need to get it cleared by your Radiation Oncologist? When did you start -  right after your radiation treatment ended? 

I have just 4 more sessions left and even with the Mepitel film, I am feeling the uncomfortableness.  Each day is now a game of finding something to wear that won't irritate the area being radiated. And I can only sleep in the nude now (even soft, loose material feels uncomfortable!) 
The discoloration and visible damage isn't too bad (yet), although there is some. 
My question to all who have been through radiation: does your skin eventually recover and return to the look and feel of how it was before? Or do you need to intervene with things like lotions, creams, or red light therapy? 
And which ones? 

Thanks! 

Re: Let's Talk Radiation

Posted by Kimberly on Apr 1, 2018 9:21 pm

I will be starting radiation end of April. They will be radiating the left breast right back to the chest wall. I’m concerned for any long term effects on my heart. Has anyone has this type of radiation?

Re: Let's Talk Radiation

Posted by cancertakesflight on Apr 1, 2018 11:34 pm

Kimberly‍ They make every effort to miss your heart with the radiation, but like you, I was concerned.

Have you had chemo as well because, personally, I believe chemo can cause more problems with your heart than radiation. I don't know if that makes you feel any better than you did before. I had both chemo and radiation (on my left side), so if there were any heart issues to be had, I would be a prime candidate for them. So far so good. I would like to believe that you will be okay too. 

ashcon‍ and LPPK‍ that's interesting about the red-light therapy. I've never heard of it, but my skin looks totally normal again after my radiation and my scar from my surgery healed beautifully. At least, that's what I've heard over and over again from a wide variety of medical professionals. 

LPPK‍ I'm so glad to hear that everything is healing so well. ashcon‍ I can certainly identify with you as far as the sensitivity. You're so close. After your last treatment, things will continue to get a little worse for 7 to 10 days more. Hang in there. You've done so well for so long. My skin peeled after my radiation and there is no evidence of that anymore. 

Debbie

Re: Let's Talk Radiation

Posted by Kimberly on Apr 2, 2018 6:13 am

cancertakesflight‍ yes I’ve had chemo and it has caused an increase in my heart rate, that’s why I’m so concerned 

Re: Let's Talk Radiation

Posted by Dielle on Apr 2, 2018 10:02 am

LPPK‍ I had never heard about red light therapy.  What is it?

My skin healed very well after radiation.  Two weeks afte, except for the fact that the radiated skin was a little bit darker you couldn't tell I had anything done.  When I went to Mexico 3 months after there was no difference.

I attribute it partly to the diligent use of moisturizer (4x a day) and saline soaks and partly to plain old luck.

Good luckto everyone who is going through it or about to go through it.

Re: Let's Talk Radiation

Posted by LPPK on Apr 2, 2018 1:08 pm

ashcon‍ and Dielle‍ eed light therapy is used to alleviate many skin conditions.  It is more commonly used in Europe than North America.  It is the opposite end of the spectrum from the UV light, at 660 nanometers, so is safe.   My husband has built some red lights for a local esthetician and we used one of these.

I also used cream several times a day. I alternated between Glaxal and an Arbonne skin cream . What made me think the red light was helpful was the radiation oncologist saying that my skin was healed so well compared to most people. 

Re: Let's Talk Radiation

Posted by Kimberly on Apr 4, 2018 12:56 pm

Does everyone burn with radiation?  Are you given a special cream by the radiation oncologist?  I've been reading about radiation and so many people talk about burning.

Re: Let's Talk Radiation

Posted by ashcon on Apr 4, 2018 5:19 pm

Hi Kimberly‍ ;
A skin reaction of some sort is probably a given with radiation.  Some burn, mildly or significantly. Some people have sores that open up. Some only have mild reaction.
Today for example, I went to my 23rd of 25 radiation treatments.  My skin has darkened a bit (like that first tan you get in the spring when you go out in the sun for a few hours with no sunscreen on).  As a matter of fact, my radiation technicians had to double check my chart because she honestly thought I was early on in the treatments versus nearing the end.

Some things that (I think!) have helped me:  I'm using the mepitel film, which helps alot.   Your doctor has to prescribe this for you, as it's not used in all cases, or in all cancer centres.
I also drink lots of water.  I put lots of Vitamin E cream on my skin each day starting about 2 weeks before treatments started.  I read somewhere that taking Vitamin E and Vitamin C supplements help - I don't know about that, but I'm taking those anyway!

Your doctor will probably tell you NOT to put any creams or lotions on during treatment unless you start to get a reaction.  The reason being that some creams can actually cause an adverse skin reaction.  If you do start to get a bad reaction, they have recommendations for creams to use (e.g. Glaxal Base or Unscented Lubriderm -- anything where water is the first ingredient).  They also have prescription creams (Flamazine) in case your reaction is really bad.

Saline soaks are also great to treat redness, burns, open sores, etc.   I've attached instructions to make your own, and I find these work great.

When do you start radiation?  
Attached files

Re: Let's Talk Radiation

Posted by bobby12 on Apr 5, 2018 5:03 am

Back in 2003 I had two weeks of Whole Brain Radiation. 

Wow what a trip I am still paying the price for it. I had a headache for two years after treatment. Back then in BC you had to have a life expectancy of under 18 months to qualify for the treatment. I only had two lung mets. 

My doctors gave me very little chance of survival.

Now days it would be targeted radiation.

We have come a long way baby. 

Good luck to all of us.

Re: Let's Talk Radiation

Posted by Lacey_adminCCS on Apr 5, 2018 9:52 am

bobby12‍ 

Always great to hear from you! You are so right treatments sure have come along way so have survival rates!

Lacey

Re: Let's Talk Radiation

Posted by jeanie on Apr 5, 2018 8:48 pm

I had my 14th rad treatments this morning and 2 more to go for my breast cancer (right side), so far, having redness with some skin pain sensation, soreness inside the breast, some headache and feeling nausea (they told me it is possible because liver may be affected). I was kind of surprised being told the side effects will actually peak in the next 2 weeks after the treatment is fully completed, just simply thought they should ease off when done. Any experiences to share?

Ashcon, My oncologist told me (and the booklet states so too) not to take vitamin C (over 75mg) & E (over 22 I.U) and other antioxidants such as Beta carotene and Selenium during the rad treatment and a week after. Are you taking them under the daily safe amount? Please double check with your medical team if necessary.  

Re: Let's Talk Radiation

Posted by Faye on Apr 6, 2018 1:15 pm

I received 33 radiation treatments to right upperl chest for cancer tumour right upper lung.
i did not get any skin irritations or burning ,could not tell that area from other side. 
I was also receiving chemo at the same time so hard to know what caused what reactions.
I did have extreme tiredness,which they felt was caused by the radiation.Also trouble eating and sleeping but that was probably more from the chemo.
Was not an easy journey but not as bad as I anticipated and one that I would endure again and be grateful for the success it achieved.
i am thankful for wonderful healthcare and for every day that is given to me.

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