June 2010 Rads

Adding myself to the group - I'm starting rads tomorrow 6/29. I've been reading your posts and taking note of your tips on creams, clothing, etc. I had my CT scan/tatoo session 6/18. I have many freckles on my chest so I hope they can find their marks and line me up properly! 

My hospital is halfway between home and work and I was fortunate to get early morning appts for the next 2 weeks. I guess I'll bring my deodrant/lotion with me and apply after treatment.

gina

ginadmc: welcome to our little group   

I'm a member of an active bath & body forum and Emu oil comes highly recommmended for burn treatment, as well as aloe and refined shea butter. Emu is a really nice oil on the skin; it sinks in well and is non-oily. There are also some essential oils that are soothing on burns; lavender being one of the best.

One of the women there is suffering from rectal cancer (I think) and she had a horrible reaction to rads. One of the suggestions was a soothing tea spritz; I know calendula was one of the ingredients.

I saw that recent calendula study and think I'll see if I can find some tea bags tomorrow. My chest is burning and I'm not sure if I'm liking aloe spray very well.

This fatigue thing is kind of strange, the way it comes and goes. Seems like I'm feeling great one minute and ready to crash the next.

Another day closer to the very last treatment!! 

Happy Birthday amidoneyet.. The big 33! And Happy Bday to lil tyke too.

Happy BDay Ami !!

I felt weird things right away. Like: sharp stabbing pain through my breast (in various places??), armpit pains, nipple aches.  I think it's normal. I dutifully reported these to the nurses and they said "Normal". I also dutifuuly reported sleeping 12-16 hours a day since Friday and they said "Normal'. I mean, come on! I used to sleep 6-7 hours a night and am a Type A who goes, goes goes all day long. This is really freaking me out. I work out before tx (just 30 min, 10 cardio, 20 yoga and strength). Go figure.

Hi Ladies, I'd like to jump in here and offer what I've learned so far.  Today was Rad #11 for me, which means I'm 1/3 done.  I was told to use aloe 4x's a day, but no closer than 2 hours before treatment.  I have some other oils, cremes and lotions reccomended by friends and my dermatologist.  I use the oily ones at night, and wear a mans tank top over,so as not to get on my p.j.'s.   I also apply the aloe right after treatment.  I bring a small jar with me to treatment, and apply it while changing afterward.  I'm also taking something called Cantharis that I got from Henry's.  It's a homeopathic medicine that is supposed to heal burns from the inside.  It was reccomended by a friend that used it during radiation, and the lady at the store said it really works.  They're little white pills you put under your tongue to disolve (4) 4x's a day.  My doc said it was o.k. to take.  So far I just have a little red rash by my collerbone.  They said that is the most sensitive area, and usually burns there first.  My tats are tiny.  You can barely see them.  They blend in with my beauty marks.  I was really worried about them being big and showing because I have a friend that has much larger, darker ones than me.  I guess who and where you get them plays into that.  I havn't been tired at all.  In fact, I'm having a little bit of a sleeping problem. I wake up at 3am, and have trouble falling back to sleep.  It may have something to do with the tamoxifen I recently started.  Hot flashes and all that fun stuff to deal with now.  I was hoping I wouldn't have to do radiation.  I did 6 chemo treatments that were hell.  I had 10 docs advise I do rads, so I finally agreed.  I had a mastectomy on Dec. 31st, and have an expander in.  I was concerned that the radiation would damage my skin too much and I wouldn't be able to continue with the reconstruction I had started. I'm praying all goes well and that I can get my new breast by the end of the year. Good luck to all of you!

I saw my radiation oncologist yesterday.  She brought up an article dated 2005 that says the following:

Oral glutamine appears to be a safe and effective way to reduce the cutaneous morbidity of radiotherapy in women undergoing breast-conserving surgery, V. Suzanne Klimberg, M.D., reported at the annual breast cancer symposium sponsored by the Cancer Therapy and Research Center.

In contrast, an aloe-based cream proved to be of no benefit for this purpose in a separate phase III clinical trial presented at the meeting.

The entire article is here.  (You can google glutamine etc and many links will turn up.)

I wonder if there is any merit to this and if anyone would try this.

I've just finished day #19. So far so good. Still no itching or change of colour / texture of the skin. I still haven't seen my rad onc since I started, but the techs tell me not to bother unless I have questions or concerns. I think I may go to the appointment next week to ask about the glutamine. That research sounds promising!

 BarbaraA - I'd put a bit of research into cantharis before taking it... I just googled it and it looks like a pretty potent "drug". Just saying. 

9 more sessions to go!!  

Got my emu oil today.  Will start using it.

Mabelle, that is great news.  Since you are doing so well you may not even need the glutamine - there was no other report like it after 2005, so I don't know how reliable that report was.

I, too, googled "cantharis" after reading it here.  Don't really think I can bring myself to try it.  So far I'll stick with aloe vera, radiaguard (occasionally) and then emu oil.

Tried to buy some "organic" lotion/body wash yesterday.  Boy was it hard!!  So many things have paraben/alcohol in them.  Reading the fine print labels almost made me dizzy.  What do you all use for skin care/wash, etc.?

I've been using Boiron Calendula gel for several days now; I met with the nurse today and she mentioned that my chest looked much better since she saw me 2 days ago. Since both sides are being radiated, my doctor thought there was some scatter going on; so they changed my fields today. Other than that, my other skin is doing good. 11 more whole breast rads and 5 boosts to go!!

faithfulc: I make my own soap and have been using that so far; I'm just about ready to switch to a different shampoo. The nurse suggested some type of baby shampoo. Just about all lotions have some type of preservatives in them, which you want for safety issues. I used to make my own lotion in small batches to avoid the preservatives but haven't done that in a long time. You may find just straight emu oil to be a good alternative to lotion for this purpose. If not, try a health food store for paraben-free products.

Hello June-bugs!

Just finished #16 today, so that means I'm about half way there to #33! This morning my skin was pretty itchy and I saw Doc today for Boost planning (see more below) and the first thing he said was you've got a rash going there, is it itchy? So he wants me to first try 1% hydrocortisone cream. I asked him last week about Miaderm and Emu oil and he really didn't seem familiar with them.  He says that he is most comfortable prescribing Radiagel and feels that most people do fine with just that.  We'll see how it goes this week.

My husband came with me the other day to take a look at the machine (he's a physicist). They explained that the whole breast treatments (the first 28 treatments) use protons which pass right through the body, which is why they plan it at an angle so that they try to avoid getting lungs radiated.  Then, the boost treatment (last 5 treatments) uses electrons which will only travel a certain depth into your tissue once it hits the skin, and then it dissipates-- so they do the planning, adjusting how close/far to the breast the attachment to the machine will be so that it goes just the right depth, avoiding the lung. And, he told me to anticipate that the booster will definitely darken the area significantly (for me, this is right around the areola).

@allisontom911:  I bought the new aluminum-free, paraben free deoderant from The Body Shop. I chose the "cool and zesty" scent. I think it is long lasting and works better than Tom's, but the scent reminds me more of a kind of man's deoderant scent, so I think I'm going to go back and pick the other "flavor" (I can't remember what that one was--somehow cool and zesty caught my eye)

Is anyone else's Rads Lab "closed" on Monday July 5th? I'm a bit miffed that I can't have a treatment that day. I'm anxious to get done, while I'm sure others are welcoming a 3 day respite from treatments. 

Have noticed that I'm starting to get some fatigue-- just here and there, a kind of stop you in your tracks kind of fatigue.

Hugs to all! 

Today is day #5, I started last Friday, but Wednesday was maintenance day for the machine, and Monday will be holiday, so I think I'm having too many breaks in between radiation days. So for now the skin is good but I'm preparing for the worse, especially because I have to protect my implant.
You girls are totally right, everything contains alcohol or parabens or estrogen or soy.
Faitfulc - It is soy hard and time consuming to find something, even a good sun screen. I'm reading all the small prints on any product, even the ones I used before, till I get completely dizzy and even more confused. That happens with food too.
Anyway, I tried to buy calendula cream, recommended by my radiation oncologist nurse and it contains both alcohol and parabens.
Mixin - the Boiron Calendula gel contains also methylparaben. (Am I too paranoic to check everything? )
The nurse also recommended me Aquaphor, that I'm using now, but it contains alcohol and is very greasy(it is goods to use at night. I asked about Miaderm and the nurses said they do not recommend it.
I also asked about being in the sun and I was told that it is ok, as long as the area of radiation is covered. Having beautiful sunny days, it is hard to hide all the time in the shadows.How are you dressing outside to avoid too much sun exposure? Do you put sun screen on the collarbone, neck, etc?

Wish you all a nice holiday and break from the rads!

I just finished #20 of 33.  I have been using Miaderm and now have an itchy rash not only on my breast, but also on my stomach.  I'm thinking I'm having a reaction to the cream + radiation because sometimes I'll wipe the excess on my belly.  It is really itchy where the radiation hits.  I've stopped miaderm for this reason, am using 1% hydrocortisone, going topless whenever possible, quit wearing a bra ( it's not pretty).  I'm just using some udderly smooth cream and aloe.  I think it's too late for me to get the emu oil since I'll be done in three weeks.  I'm hoping my skin will calm down because I also have a three day break.  I have 8 more regular treatments then 5 boosts.  The fatigue is funny, one day I'll be fine, the next I'll want a nap at about 2:00.  I'm working, so I usually just  work through it and it goes away.  I've read on other boards that sometimes the fatigue hits when you're all finished.  Has anyone else had the itchy rash thing, and if so has anything helped get rid of it?

Hello to all.

8 down and 22 to go.  Using emu oil, aloe, and, when my nipple got sore this week, hydrolatum as well.  Ordered more emu from iherb online.  It's a great, light, non-oily oil, very soothing, very easy to spread.

So far, my skin is holding up well.  On my way to radiation, I drink 3 bottles of water and 3 more on the way home. It's a lot easier for me to drink if the water is cold, in a glass, and sometimes with a squeeze of lemon.  So, everyday  this week I packed a soft cooler with a plastic glass, 6 bottles of H2O, ice, and a baggie of lemon wedges.  Having done this for all five days this week, my skin is lighter colored (not so pink) and cools way more quickly than it did after rads the 3 days last week.  Happily, there's a pit stop half way to the hospital. 

The rads are delivered from 2 positions.  If I were looking at the face of a clock, first one long/two short zaps come from about 2 o'clock and the second from about an 8 o'clock position.  On Wednesday, day 6, the machine did the first round, then began moving and stopped, completely stopped, centered over my chest.  I had a horrifying thought that the radiation was going to be delivered from there and that my choices were to roll off the table or to call for help--which I did.  The tech came right in and said that there was a little computer glitch which caused the machine to stop. She added that the machine was programmed in such a way that it wouldn't deliver the radiation if it sensed a problem with position--mine or the machine's....Happy to hear it, but it was really frighening for what seemed like a long time, probably just seconds though.

Hang in there, Ladies.  I check for your posts every day and am always interested in what you have to say. Still stunned at the numbers of us.  I've been part of a small survivors group since April.  Now, I'm the fourth from the front of the list.  Such a small group,  and in two months, three new members.  Something's happening.  Way too many of us....

God bless us all.