Spring 2013 Rads

RunFree16

RMlulu/Cindy, I'm going to go bold and wear one of my dresses to work tomorrow. I can go from one year to the next without wearing a dress, so this is a big deal.  Mainegirl, I'm glad you can go to Herceptin every 3 weeks and very glad to hear you have no side effects from it.  So you are almost done with the hard stuff! And half done with rads! JayJayC, you are so close to done! Pooh, right behind, and PToon, almost half!

Today was my first weekday not getting in somebody's car for the 2-hour round trip to rads.  I needed to make a bunch of insurance and PT referral calls in the morning so I ended up still going to work about the same time as during rads, 10:45ish.  Getting to work at an earlier time would really prove to me that my life has changed--hope to do that tomorrow.  My skin is looking better than it did a couple of days ago, but it still itches.  It especially itches when I put on my running bra, which is what's keeping me on the treadmill instead of outside.  No big fatigue yet, but that may come. 

I'm curious about the corn starch too.  I've heard of it as a deodorant substitute, but is this about using it on the radiated skin?  Seems to me it would dry out the skin that we're generally trying to moisturize, no?

braids3

hey all had great appt with a rad onc seems that the pain in my chest is from the tumors pulling off the chest wall so now i have inflammation there he prescribed hydrocort.so i'll get sleep tonight also said i need more protein. my boob is getting real small and itches alot some pinking and very sensitive nipple i've done 11 so far i think i will have 39 but that could change since i'm doing it with xeloda i can't wait till I'm joining all of u on the other side 

love and blessings chris

RMlulu

Cornstarch!



Cornstarch is for underarm area...a light dusting or for areas of glowing...or sweat! Or areas of skin on skin contact under or between breasts.

But I don't know ...rads made skin sensitive...cornstarch is a bit gritty for tender skin..so used only in the beginning. So cornstarch is now in pantry waiting for someone to make a lemon merigine pie.

momtotenkids

I finished my rads yesterday! Happy danced all the way home! My skin is red and itchy but the emu oil and hydrocortisone cream helps. I am glad I am done but now after all of this am wondering if I should have had a bilateral mastectomy? Anyone else thinking about it?

BookWoman

momtoten--Congratulations! Everyone is different, but the only time I thought about a bilateral mastectomy was while I was waiting for the results of the BRCA test. If I had had the gene mutation I probably would have gotten the bilateral mastectomy.

RMlulu

Congrats momtotenkids! Happy Dancing )) yippee!



Overwhelming joy and relief...you did it ...speedy healing of skin, body, and mind.

Not looking backward...focus forward. Even with mx or bmx rads were required...so I'm glad my girl took one for the team.

(((Hugs)))

Cindy

placid44

I finished 28 sessions on Friday. My skin held up well, which is a good thing since I still have exchange surgery to do. And I am very tired. But it wasn't bad...

RunFree16

Momtotenkids and placid, hooray for being done!  Momtoten, I had a small IDC too and I've never regretted doing the lumpectomy instead of the mastectomy.  Is there something specific making you wonder about it now?

Braids3, that is great about your rad onc addressing your concerns.  Is it good news that the tumors are pulling off the chest wall, like the radiation is doing its job?

adagio

I am 2 weeks post final rad treatment. My skin got very red and hot just in the last few days - I put on aloe vera and covered it with a piece of an old t-shirt inside my tank top. Well, when I went to reapply cream, I took the piece of t-shirt off and lo and behold my skin came off with it - ouch!! It was kind of weird seeing all the skin coming off - and underneath that skin more bright red skin and quite tender. So I now see what they mean when they tell us that the effects do indeed keep on for at least 2 weeks afterwards. So be diligent with the creams and moisturizing all the time even when things feel OK. I think I got a bit lazy because everything felt so good. Oh the joys of cancer treatments!!

RunFree16

Timely advice Adagio!  I was just remarking on how good my skin looks 5 days after finishing, but I will stay with my creams for longer thanks to your experience.

momtotenkids

ouch Adagio that had to hurt! I am stilll applying my emu oil a few times a day. My skin really stings today. 

Runfree16, My mom just had a masectomy last week for her 2 round with BC. Her mom also had it twice. My dads sister had it once and her daughter has had it twice. I knew about my grandmother and of course my moms first round but did not know about my aunt and cousin when I was diagnoised.  I went for genetic counseling and even though I am negative for brac1 and 2 they still feel like it may be genetic. They want to run a breastnext panel but is is expensive and gives information on other cancers too. I just don't think I want all the info it gives so I have to decide if I am comfortable with my treatment so far or if I want to go for more surgery. 

Sneakychiquita

Adagio - That's quite the visual! Does this mean you're having to remain topless for awhile until that new skin toughens up?  Here's hoping you heal quickly!

Bobbisil

Hi, I finished my rads on March 20th. My skin under my arm was horrible! Basically didn't have any, deep red and seepy and gross. On the day of my last treatment they gave me polymem to cover it with and within minutes I had SUCH relief! It looks like a peach-colored really thin piece of foam rubber. It's infused with glycerine among other things and it's held against the skin with the stretchy mesh stuff they use for burn victims. They say to change it once a day but mine would be soaked so I had to do it two or three times a day for a while. Call and ask your doctor about it - the relief is amazing!

I was given Miaderm to use on my skin before I didn't have any skin. It's pretty good stuff.

BTW, I went braless for probably a month and then it was just a little cotton thing. It's been a month and a half and now I can wear my regular bras. It'll get better, hang in there, sistah!

Bobbisil

Hi, I finished my rads on March 20th. My skin under my arm was horrible! Basically didn't have any, deep red and seepy and gross. On the day of my last treatment they gave me polymem to cover it with and within minutes I had SUCH relief! It looks like a peach-colored really thin piece of foam rubber. It's infused with glycerine among other things and it's held against the skin with the stretchy mesh stuff they use for burn victims. They say to change it once a day but mine would be soaked so I had to do it two or three times a day for a while. Call and ask your doctor about it - the relief is amazing!

I was given Miaderm to use on my skin before I didn't have any skin. It's pretty good stuff.

BTW, I went braless for probably a month and then it was just a little cotton thing. It's been a month and a half and now I can wear my regular bras. It'll get better, hang in there, sistah!

RunFree16

Momtoten, I totally get that.  I think if I had a strong family history the way you do, I'd seriously consider bilateral mastectomy too.  Thanks for explaining it, and I'm so sorry about your family members.  My goodness.

Adagio, I hope your skin heals fast!  Bobbisil, that is great info about the polymem, but I'm so sorry for what you had to go through.  Wow.

jayjayc

congrats to all who have just finished rads..... and it looks like there were quite a few....

adagio --- OUCH and gross......  just when you think it's safe to go back in the water

WARNING WARNING -- whiny story

Today has been interesting..... I woke up tired and cranky and okay I'll be honest feeling a little sorry for myself... I had surgery in Nov, chemo jan - april, won't be done with rads until May24th..... and have to have herceptin every three weeks until January.... and just lost my eyebrows and eye lashes (although I THINK I see the start of some hair on my head)... so basically I'm just sick and tired of being sick and tired....

Finally got going and headed to rads (skipped going to work before rads)..... so then I'm on the table and the wonder machine moves into it's first position and starts making snapping and buzzing noises that are NOT normal.... I can tell they've taked some x-rays (which they originally said would only happen on friday) but I haven't heard the rads start.... just more snapping and poping at which point I start to get a little freaked out.... and finally one of the techs comes in and says they have to reboot one of the computers... since that will take about 5 minutes she says I can lower my  arms but not to move..... especially since I'm so far off the ground (WHAT!!!!)... okay here's where I admit to being an idiot, I thought the machine was being lowered towards me, but it turns out they actually lift the table (and me) up to the machine.... I didn't really know that since I keep my eyes closed as much as possible....

So then a little while later the tech comes back in and says that now they have to re-calibrate the machine... which shouldn't take long.... so now the machine moves into position right above me and parts start moving around... and since it's so close to me I can see things opening and closing inside.... and since I have nothing better to do I start wondering if it's leaking rads or if it's going to suddenly drop on me....

Then suddenly the table starts lowering and the tech comes back in to tell me that they need to replace an engine.... WTF.... since it will take 20 to 30 minutes she gives me a choice to add the day to the end of my schedule (NO WAY I want to be done ASAP) or coming back later in the day...... so I agree to come back later today.... hopefully after it's fixed and tested on some other unsuspecting souls..... fast forward and I'm back.... everything appears to go normally but the take even MORE x-rays.... once I'm done I ask the tech about all the xrays and her first comment is something along the lines of ohhhh don't worry about getting a lot of x-ray exposure 'cause that's nothing in comparision to the rads (oh that's real comforting to hear).....

Then I'm finally all finished and getting dressed and lubing the boob when I notice a wiggly blue line around my scar... so as I leave I ask the nurse if it's a small vein and if so is that a problem..... she states that the techs probably drew on me.... to which I respond "No I would have noticed that".... she still thinks that's what it is but does agree to check it.... and guess what, it's a small irriatated vien..... which is no big deal...

okay whiny cranky story done....... guess the morale is if you wake up tired and cranky you'll probably end up earning that feeling by the end of the day.....

Dx 11/2/2012, IDC, <1cm, Stage Ia, Grade 2, ER-/PR-, HER2+Surgery 11/14/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/14/2013 TaxolTargeted Therapy 01/14/2013 HerceptinRadiation Therapy 04/15/2013 External

RunFree16

Jayjayc, I can't believe they made you lie on the table all that time!  My techs always said that if I lowered my arms they'd have to reposition me, so I am surprised yours would say "lie there and don't move" if you could lower your arms.  The irradiated vein is pretty freaky.  You have really been through a lot since November!  But I bet you'll feel better when you're through rads.  My friend who did Herceptin said that when that's all she had left, it felt like a non-event.  As she wrote to me, it was "pick up milk, water plants, get Herceptin."  I don't know if it's that way for everyone, but still it will have to feel good to get rads done.  Two weeks--it will pass!  No problem about the whining though.  We all get to be cranky here.

duckiedee

What a day you had, jayjay! Don't apologize for feeling tired and cranky. I have felt that way the entire past week! Everyone told me that radiation would be a breeze after enduring 5 months of chemo. But it has been much harder mentally and emotionally than I thought it would be. I have been in a funk ever since my first planning and simulation appointments. I have not had very positive experiences with the entire radiation department at my facility. Like you, I am just tired of all this. I was diagnosed in Sept, surgery in Oct, began chemo in Dec, and radiation started on April 30th. I also will be doing Herceptin until the end of December - as well as hormone therapy for the next 5 years. So, um, yeah... It's a lot. And I understand exactly how you are feeling.

I went for my 8th day of treatment this morning and had to wait 30 minutes before I got called back because someone ahead of me was late and it threw the whole schedule off. I'm sorry - but if you are so late that everyone behind you is inconvenienced, then the late person should have to reschedule and come back another day or time. I even had to pay for my parking today because I was over my time limit - all due to that one late person! Grrr...

On the positive side, though, this dear little lady (whom I rarely see when the appointments are going smoothly) sat with me in the waiting area. She's nearly old enough to be my mother, but she has the sweetest demeanor and kept me entertained during our long wait. She was so serene and happy that I felt a little guilty for my cranky attitude. We became friends during our time together, and I think maybe God was trying to tell me something - that I needed to adopt an attitude like hers. I guess there are lessons to be learned in every situation.

Hope your day gets better, jayjay. Sorry you had such a tough time. Hang in there and know that there are lots of us who empathize and send good thoughts your way! {HUGS}

adagio

My skin never actually broke down - it simply peeled off and exposed bright red new skin underneath. The new skin was very tender for a couple of days, but now it is just fine - thank God. I am remaining diligent with the mositurizing - never did feel the need to go topless - just made sure to avoid skin to skin contact.

Sneaky - how is your radiation treatment going? Are you feeling any more at peace with it?

Waitingforthenextstep

I am post rad tx's for one month.  Happy to say my skin has completely healed.  I am getting some strange stings and pains though. It only lasts a few seconds, but it just started out of nowhere.  Is anyone getting any stinging or other sensations in the radiated breast?

jayjayc

RunFree16 and duckiedee ........ would you be offended if I said I love you both  . As you can see I deleted my rant in embarassment..... and then you guys made me feel almost normal....

And duckiedee, looks like we had almost identical dx and treatments, except I was ER/PR negative. And yes I am also more emotional about radiation than I was about chemo.... but I was in total survival mode from dx to completion of the "bad" chemo. In other words, I just keep my head down and got through the day, kind of like crawling into a cave.  I even managed to turn off a lot of my emotions (i.e. I NEVER had black thoughts or even cried that much)...... looking back I just kind of shut down....... but then when I was done with the "bad" chemo I started coming out of the cave, and my old emotional self made a reappearance....

So now the little stuff bothers me again...... and I'm OVER all of this crap, I mean when are we done???? 

RMlulu

Hi Rad Warriors!



Jayjayc - survivor mode is right...we just keep pressing forward. There is something about the daily grind of laser tag and laying so still on that table...it is all overwhelming at it times.

Soon you will be done ... vent! PTSD yeah ...

Waitingforthenextstep & Adagio - yeah 1 month out and all new skin! No zingers! Just sensitive new skin...white, pink, red, tan, peel, bright pink again. Keep lubing and free boobing! 10 days post rads...to peelings.

Duckiedee - yeah, day 8! Sorry that you have to wait...my team took me ahead of someone anytime they were late and I was early...nice:). We have free parking...do they have stamps to put on your parking to cover the overages? Ask. Glad you befriended the sweet lady...a gift:)

RunFree - how are you doing post rads? Mental and physically? Missing your riding buddies, but not the ride...lovin the summer dress? It's going to be 108 here next week ugh...talk about rays:(

Bobbisill - yippee... able to wear a bra again...good to know...think I'm gong to remove all the underwire...maybe add a filler on left girl and keep all my pretty things:)



Sending happy calming thoughts.

(((Hugs)))

Cindy

RunFree16

Jayjayc, not offended at all!  Really venting is a great part of these forums.  Everybody gets it.  Cindy, thanks for asking--I always feel pretty tired, but I think I go down harder these days.  Skin's fine so far, but I'm not taking that for granted.  I don't miss the ride at all!  It was great having all those buddies, and also great to stop.  It is going back down into the 50s here so that dress is back in the closet for now--unless you would like to borrow it for your heat wave!  I get tired of our climate, but 108, no thanks.

duckiedee

Aww...jayjay! I am delighted that my message may have helped you somehow. That's what this is all about, right? And don't be embarrassed by your feelings. They are real and honest - and this is a safe place to express them. I completely understand what you said about getting through chemo. It took so much strength, and I too crawled into my "chemo cave" and just went numb emotionally. I think that now we are simply exhausted from that battle - only to have another war to fight. So the raw and ugly and angry feelings are just now coming to surface. At least that's how I'm feeling about it. I am just thankful to know that I'm not the only one who is struggling. 

I pray that your days get better and that this phase ends quickly. For both of our sakes...  We can do this, jayjay. Stay strong.

LisaMM

Hello ladies!  I will be starting rads in June. I was wondering if anyone has used pure lanolin with any success in keeping your skin from falling off.  I've been reading your posts & racking my brain (what's left of it) & have been contemplating using this.  I used it when I was breastfeeding my kids & it literally kept my nipples from falling off then, so it made me wonder.

RMlulu

Hi LisaMM - welcome and congrats completing chemo and preparing for rads! You will rock rads:)

I never prepped breast before nursing and yes my breast did crack and bleed ugh

But I'm 11 days post rads 28+5 boosts and my skin looks good!

My nipple has not had any issues...breast feeding cracked bleeding nipples much much harder...those smacking hungry lips oh my. Nursed 1st year:)

RO gave cream prior to rads which I used faithfully...miaderm and then emu oil which I used 4 wks out and durning rads. I was able to bath prior to rads to ensure there was no residual cream/oil during zaps. My rad experience has been good...skin is changing pink red peel cream and then again...but not at all as bad as I feared. I do free boob as much as possible...no clothing feels the best.

Best Wishes as your begin rads...ask RO & techs all your questions. Your rad team wants you to do well and for rads to be a good experience as you cross over to the other side!

Take care brave warrior!

(((Hugs)))

Cindy

CLYDAY

Sneakychiquita...I was told those exact stats as far as RADS...they said I fall in a grey area being that I had a good response to chemo and negative lymph node.  I think my age was the main factor.  I start RADS on the 28th and hoping it goes smoothly as well!  Good luck!!

klaudiak

Hello ladies, I am starting on the 28th, 28+5. I have been reading your post and they are all really helpful.

RMlulu

Hi klaudiak -



Welcome to rads! Glad this thread is helpful. We learn so much from each other and it does help with the unknown.

You will rock rads! The 28+5 boost protocol was very doable. RO said protocol would be kind to skin and my skin has done very well. I did prep skin with miaderm prior to rads.

Hydrate, moisturize, eat well, walk, and get your rest...free girl when you can:) take your sense of humor to laser tag and if you can arrive early and breath.

Rads don't hurt, but very mental with the daily grind so be kind to yourself!

(((Hugs))) brave warrior!

Cindy

jayjayc

Hi all you rad warriors,

I just finished by 20th of 25 (plus 5 more boosts) and things are going okay.... Boob is pink and I have a strip of darker pink across the top..... Also have radiation rash between the boobs (where my scar is) and across the top.

I have a question about the boosts if anyone out there has already done those...... How does that work? Is there just a single zap (versus the two zaps I get now)? I know they focus on where the tumor was, which for me was close to the chest wall on the right side of the left breast.... but that's also were I have a rash and lots of pink.....

And I also know that skin issues can show up 1 -2 weeks after treatment ends..... so if my last week is just boosts, does that mean my "whole breast" area is out of danger one week after boosts (if that makes any sense)..

Just wondering (i.e. worrying)......