If you knew then what you know now...

I would have gotten more rest...gone to bed earlier, taken more naps.  I used the biafine, aquafor and the hydrocortisone, which worked great.  I never really burnt, except in a couple of really small places and the biafine took care of them.  I drink a lot of water, but, I drank a lot more during rad treatments.  I wrote posts on this site and one other which helped because you really can't tell the people around you what you are going thru or what you are thinking, not  even your husband.  You have to go thru this to truly understand it.  I let my house not be spotless, like it used to be and I didn't care.  Just use the cremes the radiation oncologist's tell you to use all of the time.  Drink water..lots of it.  And, REST!!!!!!!!!!!!!!!

And none of the creams and lotions worked for me!  So I basted myself for nothing all that time!

I would never have let them place tape on my breast toward the end of my treatment.  I can't remember now why they put it there, but I removed it a day after my last treatment and the skin came away with it.  Yeowch!! 

I had my radiation treatmetns at 1pm every afternoon.  I carried a bottle of Pure Aloe gel (no alcohol) from the very first day of treatments.  Back in the dressing room I immediately applied it then again before bedtime.  Maybe apply again in the morning  - -  took shower and completely removed and washed clean prior to next treatment.

I am very fair skinned and I believe starting early is how I got almost to the end of treatments before I had a mild burn.  So I swear by teh Aloe Gel - - - you can also keep it cold in the frig if you prefer.

I had no regrets..everything worked like clockwork. Used emu oil before and after each tx..did not burn or even get red...it was just something else to take in stride. Did get tiresome going in each day but I didn't have to drive that far. I did not get fatigued..walked my dog each day and did exercises 3 days a week.

Radiation wasn't as bad as I thought it would be.  I was petrified to do it.  I was OK!!  You will be too.  My suggestion is to start mositurizing before you start and continue through out all the rads, a couple times a day.

I would have "complained" more. I was warned i might get skin breakdown, so when it happened, i didn't ask to talk to the nurse. The techs just did their job, i said nothing....by the time i saw my rad onc 6 days later, i had really bad skin breakdown, and it was infected.

Also, i wouldn't have assumed the itchy rash was just part of the skin breakdown, and might have realized that i had developed an allergy to the goop the rad onc prescribed, instead of slathering on more and more of it .... It was good goop, until the skin broke down; then i developed an allergy. That happens. But the radiologist thought it was "just" part of the infection, no big deal. So i put up with it for a week before insisting on seeing a dermatologist.

 Even if something is "normal" or "expected" -- check it out. Maybe yours is different!

FWIW- here's what I wish I knew before I started:

You're going to need some bras and some shirts you can sacrifice, either to creams and potions or to ink markings.  If they are underwire bras, you'll probably want to pull the wire out- unless you can go bra less. At the end of treatment you will want dark shirts that wont mind ink stains.

The areas that are most likely to hurt from burns and blisters are any place you have skin- on- skin (and remember those places are different when you lie down to sleep than when you stand up) like underarm and under boob and between boobs, and any place that rubs, and any place that gets missed when you are slathering on creams and ointments.

We have found the RAD ONC will tell you they are not radiating a certain area, like your armpit, but what they mean is they are not *purposely* radiating there.  But the angles are such and the way our body skin "drapes", skin can  get in the way and get burned. If you can see where the beam is going, there's a tip off.  

I *think* we are basically agreed that you want to use pure aloe and calendula ointment.

Linda provided a link to a study about using calendula:

Phase III Randomized Trial of Calendula Officinalis Compared With Trolamine for the Prevention of Acute Dermatitis During Irradiation for Breast Cancer

The aloe- as previously said- should probably be the "gel" form and not the plant, although the plant has helped many, because some have reaction to the plant.  

  If and when it gets bad you'll want these petroleum antibiotic bandages and covers,  If you are using silver sulfadine cream (which a lot do, but my RAD ONC said no) some gals found the silver sulfadine cream easier to use by putting the cream on a bandage first, then applying the bandage with the cream already spread on it.  Be aware that your skin will probably come off with the silver sulfadine.  When I got bad burns and broken skin, it was Bacitracin with the petroleum bandages that really helped - and probably wont pull your skin off with it, especially if you take them off in the shower as they loosen. Of course, no shower water directly on your radiated skin, and use tepid shower water.

Advil is the pain med of choice, stopping inflamation and possibly easier on yoru stomach. The pain is from 2 things, the radiation makes everything swell, including muscles and stuff under your skin.  This is what the ibuprofen is about, chow down on them.  The other thing is the burning skin, which starts as red bumps that become blisters, which will open.

Get a surgical pen for them to mark you up with instead of the sharpies they generally use.  Sharpies are not FDA approved for use on the skin, of course surgical pens are.

In my case, I was able to get fluorescent tattoos instead of little black specks.  Fluorescent means they dont show in nornal light.

You probably should check out this article 

Phase I-II Trial of Prone Accelerated Intensity Modulated Radiation Therapy to the Breast to Optimally Spare Normal Tissue (download the pdf, the images are pretty amazing)

about how to avoid getting your heart and lung in the beam, although even when the beam does hit the heart and lung, there is negligible risk.

 

Cut a soft t shirt into LARGE swaths to cover your skin when you have the creams on, and if you collect boob sweat, use swaths instead of any kind of powder,  even corn starch.

If and when they get to boosts and want an outline drawn on your body for their beam, see if they can use smaller marks, just to minimize the ink mess for you.

I found vests useful. (nelia found tight men's t shirts to be useful for same thing, keeping the bandages in place)

The fatigue is weird, and all the symptoms are weird in that they are not exactly consistent.  Great one day, crap the next, great again, and now at the end its really crappy burns for 5 days so far.  I'm also the only person anyone knows who had a BIG reaction the FIRST day- that went away the second day.  ::shrug:::

Appointments around lunchtime work out best because you can get a nap in before the appointment, and then you have some time in the afternoon to get things done.

At my center I can bring my own music during treatments, nice people both patients and techs.

I also wear my fancy velvet gloves to hold the handle bar during treatments, partially because  I dont like the idea of grabbing a bar that may have other peoples cooties on them, and partically because its kinda funny and fun.

It doesn't hurt or anything during the treatments, but its really weird especially if you think about what they are doing.

As much as it can burn and blister and all that - and some people it just DOESN'T, they have no problem like this- it seems that once it starts to clear up it happens really fast (or seems to) .

nelia had another good rule, if you put it on and it stings, stop using it.

I agree 100% with the advice previously given on this thread, it's worth repeating to drink lots of water and get some exercise to manage the fatigue.

And it's really worth it to repeat: COMPLAIN MORE, SPEAK UP, DO NOT TRY TO BE A HERO.   Even though I complained, they failed to look under my boob, and I had pointless hellish days and a weekend too horrible to repeat because they didn't see the problem- because they didn't look and I didn't show them.  When they finally saw the wound they actually said I should have been taking massive hydrocodone.  But- as soon as I put the Bacitracin and petroleum bandages on- and left them for 2 days- it stopped hurting within minutes.  

man, I know nothing about the emu oil.

and Jeanne_D is completely right about other people not understanding and letting housework go.  Made some great pals and fun in the waiting room for radiation though

One more thing: Now that I am one week out from RADS I am reading a list of  "Symptoms" I wrote BEFORE RADS.  I wrote down my nausea, moodiness, periods, pains in boobs, which boob was larger, took pics... and I am glad I did.  I feel fairly normal, aside from the boost spot which is red, but my radiated boob is larger.  I just checked the symptoms list... it was before.    

Congrats, Linda!! At my treatment facility they ring a big bell for all to hear when someone completes their last round. Mine made me cry..!

I didn't have any problems until right after treatment ended, when my skin wept and peeled a little. It resolved quickly, though. I had used aloe vera gel throughout, and I seem to recall I stopped using it when treatment ended (because I was fine, right? HA). I am due for another round of rads due to a new primary, and this time I will use the gel well past the last treatment.

I would also have been more diligent in keeping/expanding my range of motion. It's a bit restricted still because I didn't pay enough attention - head in the sand, I guess, because everything else went very well.

I walked to treatment every day (about a mile, roundtrip), which forced me to get daily exercise, and I think that was a big help in keeping my stamina up. So this time, I will actually try to exceed that a little, as I did get somewhat fatigued last time - again, noticed it after treatments ended. It was not debilitating, but I did tend to need more recovery time than usual after exertion.

I took the staff homemade cookies on my last day. Everyone was so phenomenal!

I just started rads, thanks for the great advice!