Radiation Advice?

Deb33 · 10-19-2011, 07:11 AM

Hi everyone,
I am ready to begin the next, and hopefully final phase of my big adventure - radiation. I am to have my left expander overfilled in a few weeks, get measured and start 6 weeks, 5 days a week, of radiation the day after Thanksgiving.

I'm curious if anyone has any advice for me? Or helpful hints that worked for them? I will be having my axilla, chest wall and clavical radiated.

I appreciate anything you have to offer.

PS - I am holding onto the info I have been given that radiation is a "piece of cake" compared to the 10 cycles of chemo I just finished. I hope that's true?

snolan · 10-19-2011, 07:28 AM

Radiation is by far much easier. How you skin reacts differs from person to person. Mine just got a little red like a sun burn, others can blister or crack and become very sensitive. I had to wear a lose bra as the elastic did irriatate the area a little. Your radiologist should have some cream to put on your skin, apply as much as you can before it starts to get red. The treatments only take a few minutes, to get your measurments for the machine takes a little longer. Overall it is easy just a little time consuming due to the fact you have to go in everyday.
Hope all goes well for this stage for you.
Suzanne

Pray · 10-19-2011, 07:36 AM

Hi Deb,

The one thing that helped me a lot was Vigilon Primary Wound Care. It is a cool strip of gel that normally keeps a wound from drying out. It keeps it moist. It is not messy They gave it to me the last week and a half of rad. It helped me out so much! They are quite expensive and they would only give you one at a time. So I asked for some everyday and the last day one of the RN's gave me a whole box and a half. Which I used everyone of them. especially when I blistered. Because of the strips I did not have a lot of blistering. My skin healed quickly and no one can even tell I had Rad. Good luck and Gods blessings to you in your last phase of treatment. I too pray it is your last!

Oh one more thing Lotion, Lotion, Lotion! They will give you a jar of some great lotion I can not recall the name right now.

Your Friend

Nancy

sarah · 10-19-2011, 07:41 AM

Hello Deb,
the cream that usually works, didn't for me so I had to change creams. My sternum area was also irradiated and one night I woke up thinking I was on fire, luckily my husband suffers from GERD (acid reflux) and quickly brought me a bottle of Maalox and told me to gulp some down. I did and it calmed it down. The next day the radiologist gave me a prescription for something he felt was stronger. Most people don't have this reaction or as strong radiation as I had but I would suggest having a bottle of Maalox handy just in case. (or something similar) If you've done chemo, this is a walk in the park. Just a drag because it's daily but you'll become friends with the other patients who come daily also. we called ourselves the radiation club and chatted and enjoyed each others company - it helped with the short wait. It's very fast and I could drive myself (unlike with chemo) the 45 minutes to and from home. Don't forget, no cream on before the session, only afterwards and stay out of the sun. You might want to talk to your pharmacist about what's the best cream although Nancy seems to have a good suggestion.
Take care,
Health and Happiness
love sarah

NEDenise · 10-19-2011, 10:07 AM

Deb,
Good luck with everything! You're always a few weeks ahead of me with these things, so I'm glad you asked our panel of experts for advice.
Please keep us posted on how things go for you.
On a sort of related note...how's your hair doing? Mine's almost a half inch long woo hoo! (simple minds, simple pleasures?)
Stay strong!
Denise

Kellennea · 10-19-2011, 10:38 AM

Deb -

For me, it was more annoying driving around looking for parking and changing in to a gown then it was receiving radiation (the later took less time).

This will be far easier than chemo! I have heard people complain of fatigue but I never experienced it. My appointment was at 7:30am and then I went off to work.

and yes... lotion, lotion, lotion. I used Aquaphor a minimum of 5 times a day. I made sure to keep the area extra moist to avoid any blistering.

I had my last radiation treatment June 6th of this year, and to look at my breast it only looks at though I have a slight tan.

Good luck - you'll do fine

Kelly

Gerri · 10-19-2011, 11:29 AM

Hi Deb,

I carried a small bottle of 100% Aloe Vera gel in my purse. Before getting dressed I applied it to my entire breast; it was very soothing. Every couple of hours I applied more. I had my treatments during my (extended) lunch break and went right back to work. At the end of my treatments my skin (I'm very fair) was a very light pink - I never blistered. The fatigue didn't hit me until well after everything was over.

Best of luck to you and everyone else entering this phase of treatment. You are in the home stretch!

Deb33 · 10-20-2011, 07:46 PM

Thanks for the scoop girls - I appreciate it. Denise, since I was on Adria/Xeloda for the past couple of months, my hair stopped growing and thinned substantially. It was crazy, like having an old cat around - short hair was everywhere but I didn't want to shave my head smooth - I am holding onto my sparse 1/2 inch. Its only a matter of time before it starts growing like a chia pet again - I can't wait.

thanks again girls - I always appreciate your wisdom so much.

NEDenise · 10-21-2011, 06:30 AM

Deb,
I bet you still look gorgeous!

Oddly, my hair is growong back, chia fast, and I think I may actually miss being bald!
I love the freedom of just popping on my wig, or a hat...2 minutes to get ready. And seriously, I have not missed the hairdryer or curling iron routine.

Besides...bald is STRONG...bald is BRAVE...and in a strange way that I never thought I'd buy into...bald is BEAUTIFUL! I look in the mirror and think, "Hey! You're holding up pretty well!"

I hope your radiation does its job...and you can announce your NED status very soon!
Hugs!
Denise

Mar16 · 10-23-2011, 03:10 PM

Hello Ladies,
Hope you don't mind me joining this conversation. I finished my radiation about 3 weeks ago. It was not difficult at all. I mostly just got pink, I have pale skin, but did blister by my neck. We were hitting lymph nodes there and that was my tender spot. It was absolutely something I could live with but the girls in the office knew it looked very sore and asked the Dr. to prescribe me a cream. I was using an over the counter cream that I was told to use, but wasn't really helping. I did put neosporin (not the white cream one) on with a bandage over to help keep it moist, felt much better. But once I started to apply the prescribed cream it healed in just a few days.

Went for my follow up a few days ago and Dr. said my skin took it very well and healed very nicely. Hope your experience goes just as well if not better!

Also just want to comment on your hair, I think it looks great! I have always worn my hair short but not this short. I ended my T/C treatments on July 20 and my hair is really growing in. I can actually texturize it with a cream now. Just wish I could dye the grey. Dr said not yet.

Well take care and I know both of you will do great with your radiation! Mar

NEDenise · 10-23-2011, 05:30 PM

Mar16,
Thanks for chiming in! I'll be starting my rads in a week or two...and I'm very fair. I'm glad to hear about someone else who made out okay!

BTW- my hair is only about 1/2 inch long, and I've already colored it twice! The white was more than I could take! No one told me not to, and it's been fine. I wonder why your doc said no??? Hmmmm...curious...maybe I'd better check with my onc before I color it again!

Denise

Ruth2 · 10-24-2011, 03:57 AM

I bonded with the chemo room right away but took a little longer to feel comfortable with the radiation room, with its big machine and the strap on my feet and the need not to move. It was psychologically harder in many ways to interact with a big machine (though wonderful people were on the other side of the door, always smiling, always helping when they could come in). Anybody with past experience of being somehow traumatized in a close space needs extra help with the transition to radiation. A wonderful friend gave me some advice: to take a flower into the room, something I could see. I didn't take a flower but a book of her poems, and that gave me comfort, as much as a flower, knowing it was in my purse. That day I also noticed that there was a somehow lighter corner of the dark room with a shelf that had the CD player and a number of angel figurines, including one that glowed. As for the physical, I did experience fatigue but used a great cream (Miaderm) and didn't suffer on the skin, though by the end I did look like an iron had been held to my breast. During the time of my radiation, my mother's nursing home helped us both out in very kind ways as she was in hospice and I was juggling time there with herceptin, radiation, and all the rest. People are angels too.

NEDenise · 10-24-2011, 09:37 AM

Ruth2,
People certainly do sometimes do the work of angels!...And, it sounds as if you are one of them.
I was with my Mom through her hospice time, about 2 years before my diagnosis. You are an absolutely amazing woman, to cope with both at the same time. I'm not sure I could have done that...probably why God didn't ask me to.

But God must have great things planned for you! (To whom much is given, much is expected - that's a paraphrase...even before chemo, I couldn't quote Scripture from memory!)

I'm a teacher too...elementary, and middle school (math).
What do you teach?
Oh man!...Please tell me you didn't also work during all of this! I will feel like such a slacker by comparison! (Just kidding everyone...don't get excited...I know everyone is different...and every job has different demands

)

Ruth, I hope you stay NED forever!!
Be well! And thanks for sharing your story!
Denise

lkc Gumby · 10-24-2011, 09:47 AM

Hi deb, I had five fields of rad txs so I did get pretty burned up. ( It was still much better then Chemo for me )3 hints; don't use any soap on the Rad area. ( none at all, trust me ); Aquaphor ointment 2x a day saved me and remember when you are completely done you won't start to heal until 2 weeks after your last Tx.

Joan M · 10-24-2011, 12:19 PM

Deb,

Glad to hear that your onc is radiating to the clavical. An interim report of the MA.20 trail showed that for women with early-stage breast cancer, radiation therapy to regional lymph nodes after breast-conserving surgery reduced the risk of the cancer spreading to those node areas and reduced the risk of developing a metastasis. This report was given at this year's ASCO meeting in June.

Good luck with the radiation!

You look great in your photo.

Joan

Becky · 10-24-2011, 12:44 PM

Well, I did have some trouble with radiation at the end of the whole breast (last 5 or 6 were only boosts to where the tumor bed was so it spared the rest of the area). I did well at first but the last 6-7 whole breast rads started me from just being pink to blisters. What I did and how I coped:

1. Used Biofene ointment which is "behind the counter" and easier to get with a prescription but I did find that "Fruit of the Earth" brand aloe vera gel rivaled this product. Aloe Vera gel - $2.00 a tube, Biofene ointment - $25 a tube.
2. I bought cotton bras. When worn inside out then the band underneath is the cotton and not the synthetic stretchy stuff - worked well cuz I worked during treatment and needed to wear a bra for work.
3. I bought cami's with a bra built in - not as much support but much more comfy for tender skin.
4. You will have to wash the area with soap. You will need to do this so the ointment or other product you are putting on is off during the rad treatment (can cause optical bouncing of the rays). Use unscented Dove as it has a moisturizer and is not as harsh. And no scent where a fragrance oil might irritate tender skin - my rad nurse recommended this. Ask your rad nurse about other suggestions.
5. I was very tired especially a couple of weeks into it. Rest - it really catches up with you.

If you are not blister burned but very tender, ask your rad onc for a prescription of Silverdine ointment. It is an RX but heals blisters. I should have used it prior to blistering when I was so pink and tender but didn't get it until I was blistered. If you are in week 4 or 5 and feel tender and burning (even though all you are is very pink), I would get it and use that as your moisturizer instead of the aloe vera or whatever else you decide to use.

It is not as bad as chemo - really, and I did burn and blister but by a week after the boosts, I was really well healed (since I didn't get boosts in that blistered area so it was 2 weeks of healing on that area). I still put sun lotion on my whole chest in the summer - I have to protect the radiated skin on the right and do the left so I match.

Mar16 · 10-25-2011, 06:06 PM

Denise, I'm jealous. The grey in my temples is horrible. My onc didn't really say why I shouldn't dye it but the nurses told me since there are so many metals in my body from the chemo I couldn't be sure what color my hair may turn out. Sounds like you were fine. I go back next week and will ask again.

Also, I didn't work for the past few months. I work in a Casino and was in a position dealing with customers and participating at big events. I didn't want to be around all those people, didn't want to get sick. Decided to take some time for me for a change. Get myself well. That is more important right now. Take your time and get well if you are able.

I saw that you went to UofP for your surgery. I was close by, I went to Jeff. We are practically neighbors. I was born in Penn. but grew up just outside in NJ. Down the shore now.

I wish you the best with rad. I hope you deal with it well, I really had no problem with it. I didn't start to blister until the last 6 or so treatments and it wasn't too bad. I have seen much worse so I am very thankful mine went so well.

Please take care and let us know how it goes!
Mar

Ruth2 · 10-26-2011, 02:21 AM

NEDenise...thanks...I teach English and had a scheduled leave that coincided with a lot of my treatment, great luck. I am working now and working on getting more energy, with the Herceptin leading to these cycles (up to feeling great, down to feeling tired and tearful), which will end soon, knock on wood.

During radiation, having to do something every day for so many days was a new challenge for me, to be so scheduled, and I think that the discipline rubbed off a little in some ways (a positive effect). In terms of the radiation, the scar boost may have been more of a challenge to the skin, but it all healed well soon enough; during the rougher times, the dr. gave me neosporin with a painkiller in it as well. I forgot to mention that before.