Spring 2013 Rads

Wow - so many of you wonderful women are so strong and positive through all the horrible SEs. I've completed 19/33 and had to take time off because of the painful and itchy rash. I'm getting the sharp, shooting pains also (zingers, I think someone called them?) Anyway, I've always had sensitive skin and I'm terrified after reading all the posts about blisters and raw skin. I'm having a hard time already and I have a long way to go.  I start again Friday and I'm so worried - my rash isn't healing as well as I'd hoped and I'm so afraid I'm just going to blister right away. Then I think about some of you ladies who are going through so much more than I am and I feel guilty, like lemon68, for complaining.  I know I should be grateful for what I have but I can't help but envy those of you with husbands/significant others at home to help you. It's so hard being the only adult in the home with all the responsibility on my shoulders. I'm tired of working through all this crap and I'm tired of hearing myself whine!  Thanks for letting me vent! 

(((Lemon and Chiefsfan))) You are scaring me to death and Monday is coming, but I am hoping both of you feel better really soon. I am learning so much from all of you. I am having 3.85 gr a day as opposed to the usual 50 gr that people have on the 33tx protocol. I think I read that the 16 tx protocol is 40 gr so I am close at 38.5 overall but doing it in 10! YIKES!! The difference is that the 16 tx protocol is the same as the 33 as it is done to the whole breast where mine is going directly to the lumpectomy site with a 1.5 cm perimiter around it so very concentrated in the partial breast tx that I am having. We shall see...

Hugs to all of the rads warriors!

{{{Lemon}}}

I'm sorry you're hurting so much and I'm here to tell you that you will heal and this will be behind you. I'm just under 3 weeks out from the 16 day rads tx, and my raw spots are healing nicely now. I still have to treat my breast very tenderly, but each day is getting better and the recovery seems to be speeding up as more time passes. The rads take out the rogue cancer cells, but they also greatly insult the healthy tissue and it takes time and gentle, loving care to heal and for the skin cells to regenerate. Do whatever it takes to keep yourself as comfortable as possible during this time and definitley keep it deeply moisturized. I never thought I'd hear myself say I was a fan of aquaphor, but when you're raw, it can be one of your best friends.

Rads are no picnic (can we say understatement of the year?), but side effects vary from person to person. It's good that you're sharing your experience because those who follow us will learn from us, and see possibilities for handling it and trusting they'll heal. Unfortunately, you seem to be on the worse end of the range of side effects. Mine were worse than I expected, too. When someone who hasn't been through radiation would tell me, 'it will get better', it sort of felt like it was dismissing the pain I was in. But, when someone who had been through it said those exact same words, it gave me a line of hope to hold onto, because it can feel very depressing to be in pain and not see it getting better over a few days, like so many other ailments. It does take longer than that, but you *are* healing and it really will get better. Promise.

Hugs, Linda

I finished my 25 radiation treatments and had my first boost yesterday.  Monday will be my last trip to the "room".  Yippee.  Then back to the Onc to decide on medication.

I didn't start to see any skin change for about 3 weeks, then a light pink.  It didn't seem like anything was happening.  Now it's a good red burn, very sore under the arm pit and under the breast.  Doctor gave me burn cream on Monday to help with healing.

My boosts are cone beam CT.  I had another CT last week and am positioned on my side now, and laying in a body mold to help maintain my position.  My tumor was more on the underside of the breast and this position seems to be the best access.  My treatmet lasts for 28 seconds, the machine recalibrates and then another 38 seconds.  I know this because now that I'm on my side, I'm facing some monitors in the room I can read, versus staring at the green laser beam in the ceiling up to this point!

My treatment was pretty uneventful.  Monday through Friday treatment, a visit with the RO on Mondays, an x-ray on Tuesdays.  Not really any more tired than usual (that I can tell), more tired of the daily drive. 

I did see a lymphodema OT for about 6 visits as I had some serious pain, numbness in that arm, more from post-op I think.  No roping or lymphodema really, she has me doing stretches and it seems to help when I remember to do them.

My biggest complaint is that the waiting area is UNISEX!  Does anyone else have that setup???  A small waiting area with 3 chairs, two dressing rooms with lockers and locks.  You get a hospital gown to keep with you and bring every day.  So the women are sitting topless with their gowns on and the men are sitting bottomless with their gowns on.  I don't know why, but it really bothered me to be sitting with men knowing they didn't have pants on! One day the tech called one of the men and he had to quick grab the back of his gown when he got up to walk with her. haha!

Wow, I have no idea if the rooms are coed and if I put a gown on and sit with men...what a thought! I guess I will find out Friday when I go for my final set up and directions on what to do Monday morning! At least I only have to do it 10 x and for 5 days!

Sunny, congrats to you on completion of rads! That is great!

Adagio, hang in there chica 

And you too RMlulu Cindy girl(our cheerleader buddy who I adore - don't think I have met ANYONE more positive than you on these boards xoxox)

I am right behind you ladies...keep me sane and talk me off the wall or I won't show up on Monday morning! LOL xo

Hi all,

I started my rads on Monday so I've completed 3 of 30...... and for some reason I'm almost more nervous about potential SE's then I was during chemo...... I'm constantly feeling and/or checking for problems...... I started putting Eucherin lotion on after treatment today, but boy is that stuff greasy...... I was already nervous because I used it last night after showering, and still felt it this morning, so I did a wash cloth cleanup..... I don't want anything interfering with the rads...

My center is also co-ed but since it's pretty new (open for a year) I never see any other patients...... in fact I was running late yesterday and since no one was around I almost ran from the dressing room across the hall to the treatment room without the gown (YIKES)... luckily I caught myself in time..... but to be honest I find the gown kind of ridiculous... ours are long gowns that open in the back, and they pull them off when you're on the table so you don't want to tie it closed....... I guess it's better then nothing...

Hi Lemon, sounds like you are in a little better place today thanks to our sister Destina! So happy that you know there is light at the end of that tunnel! As for having an implant or a balloon, mine is not that kind of partial breast rads. You are talking about either brachytherapy or mammosite neither or which mine is. I am having 4-D conformal partial breast radiation EXTERNAL BEAM which is basically the same as everyone else here is using but I get CT scans every day (a cone beam CT,not a regular one as that would be too much radiation which kind of makes me laugh a bit) to make sure it is pin-point accurate. This trial is so new, they did not have it in the dropdown on BCO so I chose the 3-D external beam option you see in my siggy cause that is the closest.

The statistics are that 15-20% will have mild to moderate skin issues. Only 3-4% will have severe burns it said. Fatigue is the same as for whole breast protocols. Shrinkage of the treated boob is the biggest issue as this is about 3% more than with whole breast rads. In essence, I am having 10 boosts of 3.85 GR a day divided into the two tx's for a total of 38.5 GR to just the one small area of my lumpetomy site and 1.5 cm perimeter.

They are basically gonna fry the area big time. Scary thought... They will come in from 3 or 4 different directions - the sides and then directly from the top. I will be on my back and in this thing that doesn't let me move. I don't know how many seconds my zaps will be yet. I have my final planning session tomorrow and will ask those questions. My RO is a woman and I love her! They will be keeping my heart and lungs out of the field (at least I hope so since my lesion is on the interior of my breast and very close to the heart) and in one week, done! I will go at 7:30am and at 1:30pm every day next week. The tx's must be 6 hours apart minimum. Once I begin, I can't stop or take time off in this protocol. So, I have to endure whatever comes unless it is so severe that they stop it themselves. Kind of scared but hey, I chose it. I could have had the 33tx protocol but I wanted in on the trial so here I go!

Cindy, thanks so much for your message of hope and I want you to know it really does help me more than you will ever know!

Heading off to work!

I believe I'll start rads sometime in June. I finish weekly taxol on May 17, then get a 3 week break.



My question is...I had a left mastectomy, and I know rads can affect the heart. What kind of breathing do they have you do to avoid the heart getting zapped.



Paula

Jennie~~Thanks for explaining that to me. That was one of the things I was concerned about.



Paula

I have my planning meeting on May 1st. Probably going to have 30 treatments. I am very fair. Always burn instead of tan so I am concerned.

Good morning!

Patty, doing the happy dance for you!!! Congrats on being DONE! My understanding is that the rads keep working inside your breast for a week or two post finishing and then it begins to simmer down and reverse for the cool down phase. It is still affecting the molecules in there for a while I guess. Anyway, cooler days are ahead for you!

Paula, mine is leftie too and I start on Monday, but I am doing a clinical trial of partial breast rads (external beam the same as all of you  not brachytherapy or mammosite balloon) so I have a CT scan every day to make sure it only goes to the lumpectomy site and 1.5 cm's around it. I don't know if my heart is in the field and will find out today if I will do breath holding as today is my final set up. They do have ways to keep your heart out as much as possible.

LOL Cindy about SPF 50.8 Gr! I only need 38.5GR (unless I hear otherwise today at final set up) as that is what I read that partial breast rads is over 10 txs (3.85 per day divided by two) so maybe my SPF can be a little lighter...or not. Who knows? Another question I have for the RO today at final set up. That is in 6 more hours...no turning back now. Monday I start this party! Because no one is having this I have not a clue what to expect. The closest is my 16 tx buddy Lemon...and I know it was rough on her. Nervous is an understatement.

Welcome Piperjo. You have a few weeks to build up. Ask your MO about your red count and make sure you are eating as well as you can. I hope you feel better!

Hi, sorry for overlap with the other thread--just finished 20/30 today, and so far so good!  I get 2 grays (my techs express it as 200 centigrays) every day, total 60. My skin is doing well, pink but not really burned.  A bit itchy at times, nipple sensitive, some soreness.  Really all pretty good.  I feel very fortunate.  It might get harder from here, I know.  My best thing is my driver rotation, a different friend or colleague every day.  It's like a party spread out over each weekday where you get to focus in on one person for two hours!  (I live about 50 minutes from the rads center.)  The breathholding is going fine.  I got mapped and scanned for my boost today.  The tech put stickers on, the doctor put dots on me with a Sharpie, then the tech used acetate to trace a map of where they would aim the boost, and then she took pictures with a digital camera.  First tattoos and now nude photos!  And I used to be such a "nice girl"!  Anyway, I am crossing my fingers that this won't get any tougher, because up to now, it has been quite manageable.  Hugs to all--especially anyone having trouble with this! 

Sheryl, Congrats on being half done! I experienced fatigue in my 1st week (16/16), it seemed to come and go. Totally normal, when your body says lay down listen to it. Good luck on the rest of your tx.

Lemon