May 2012 radiation

Neeners815

You ladies are going to do GREAT.  We're a team and we're all getting all-clears from here on out, got it?

Neeners815

BL I giggled at your nipple story  Mine is still losing skin, but I still have it!  

BLinthedesert

Had my first follow-up mammogram today -- only on the "bad" side, which was weird because I wanted to ask the radiologist if she saw anything on the "good" side based on the MRI from just before my lumpectomy (I was hoping to be able to skip the 6 month follow-up for the MRI).  I guess ol' lefty only gets a 1-year mammogram + 6 month MRI.  

Anyway - it hurt more than they usually do (since they never really "hurt" before) - but it was tolerable.  My nipple is super sore this week for some reason (probably because the RO pointed out to me how swollen it was, damn her ;-)). But, I got some physical therapy on my rib cage and shoulder yesterday (my running guy actually is an awesome all over therapist, who knew?) -- it was a lot less painful today when I ran, so I actually did my first workout since April!  Yippee!

I hope you are all doing well --

Neeners, I can't believe you are still "shedding" nipple ... yikes!  Kind of like snake skin heh?   

mckenna

just checking in to see how everyone is i had a great weekend but currently and so frustrated right now.  the lab is saying they never received my paper work for my brca testing so now months have been wasted.  i am beyond pissed.  you wuould have thought by now i would have realized that i have to do everything on my own.  but i thought at least this would have been handled.  i have been calling the bs office they  should have known this was taking too long. ugggggg

sbelizabeth

Mckenna, doesn't that just chap your hide?  Sorry your paperwork fell through the cracks.  I think mine only took a few weeks, so maybe you'll have your results in hand soon, now that you're on the case.  Glad you had a great weekend!

BL, glad you're getting back in the game with the workouts. 

Neeners, haven't you been finished with rads long enough that your nipple shouldn't still be peeling?  That seems odd to me, but what do I know? 

Good news for me--my blood counts were high enough to get my first follow-up chemo this afternoon.  Yay!  That's one down, seven to go.  I hate to jump back into the chemo pool again but these rounds are for "insurance," so here we go.  At least with these drugs I shouldn't lose my hair, and who would want to part with this gray, curly, Pixie-cut?

Ulightup

New to thread but I have been reading off and on. Just wondering for those of you who experienced radiation burns, do you think silvadene or the gel pads ( vigilon) helped?

I have done 28 WBR +2 boosts and have 3 boosts left. Skin was great up until last Friday. Painful, peeling, raw! Thanks for any tips

Lagata1276

Hi Ulightup - I'm sorry you have burns. I'm mostly on the June thread, and did see another gal who used Silvadene only and had bad burns. I totally recommend Aquaphor, as I used prescription Biafine which I imagine is like Silvadene, but as soon as my RO saw my angry nipple, he said to coat in Aquaphor (cover in Tefla) and alternate with my prescription 2x a day. It's peeling a little, but not raw. I've been done for 2 weeks. No problems other than swollen, white nipple...



Hello May group! Miss you Neeners, BL, McKenna, et al. You guys are awesome!!!

sbelizabeth

Hi, Ulightup.  I've used every potion and cream known to man, and frankly, I think aquaphor is probably the best.  It's goopy and thick and maintains moisture in the skin very well.  It's a mess, though, so if you can figure out how to cover it, all the better.

BL used a dressing called Mepilex, a big sheet of foamy, sticky stuff that you can cut to whatever size and shape you need.  It's pretty great at soothing and preventing friction on sore skin. 

Hi, Lagata, thanks for dropping in on the May group!

jittersmom

Ulightup...aquaphor is the best. The nurse showed me how to put in on a large nonstcik gauze like pad and just sitck it on under a sportsbra even at night so it stays on the spot. I go a lot of releife from that. Also my RO gave me something called radiplex. I would put that on right after treatment in the dressing room, and use it like 2 or 3 times a day. Good luck

sbelizabeth

OK, ladies, you're going to laugh your socks off.  I finally figured out a way to keep aquaphor on this big burn on my back, which is rectangular-shaped, and right now about 1 1/2 inches by 5 inches.  A mini-pad (yes, THAT kind of mini-pad) is perfectly shaped and stiff enough that all it takes to keep it on is one strip of tape along the north-south pole.  And with all that aquaphor gooped underneath it, it doesn't stick to the burn.  Perfect.

BL, I tried the Mepilex on the burn but with the aquaphor it just didn't want to stick very well.  It might have worked better if I'd used really wide margins on the Mepilex, though. 

I just hope no one can see this through my shirt.  They'll think I'm a complete nutbucket.

My white count was almost normal yesterday, so chemo was a go!  I'm feeling fine today, and I'm looking forward to October when the only thing that's left is the building of the new boobies.  Have a great Thursday, everyone.

schatzi14

sb..congrats on the WBC and the green light for the chemo. You are on your way!

mckenna

SB, the stomach pads i used looked just like maxi pads, so i can totally see tha working i really hope your WBC can stay high enough to heal your radiaion wounds.

hello, may friends, i miss you. 

i used aquafor and nu jel pads, both worked for diffrent stages of my "burns"

i have my pt appt a week from today, i will definatly check in afterwards to tell you all how it goes.

my treatment facility has taught me that the only way to get what i need for myself and my health is to either cry or be a bitch.  today i chose bitch.  the lab now has my paper work and i made them give me a date that it should be prcessed so i can start calling on that date when i dont' hear something.  so as of 8/31, i will start harrassing.

boob is still red swollen and itchy, nothing that i can't handle just mildly annoying.  i really wish i knew was was surgery related and what was radiation related???

have a nice night

Neeners815

Lagata!  I miss you, too.  I hope you're doing OK?  How is your heart?  I was thinking about you the other day, so crazy timing that you posted so recently!  Big hugs to you.

Ulightup

Thanks for all the tips rad girls! Plan to aquaphor up!

Lagata1276

Neeners - heart is okay for now. Surgeons here won't touch my anomaly due to my clotting disorder as I currently have no further symptoms. I'm still getting a 2nd opinion at the Mayo once I get all my records together. I see you had a bit of a concern. The ER docs tried to blame my chest pain on the inflamed chest wall from rads but when I told my RO this, he was livid and said he should have been consulted. He says any heart SEs would not be until months, years down the road.

That's one thing I forgot to ask my RO about yesterday... Why does the nipple turn white, and how long before it gets back to normal!? Anyone?

mckenna

when i was having my "burn issues" the dr said that parts of the skin will start to turn white and not to try to "clean" that off because that is actully the new skin and it will eventually get pigment.  not sure if that iw what you are experieinceing but that was the explanation i got

BLinthedesert

Hello May ladies!!  

Katy - the mediplex are supposed to be used without any creams/lotions/potions - hence why it didn't stick, have you tried "not" using aquaphor?  I found I couldn't use anything when my skin was at its worse.  How is your sister??  I hope you are doing well with the chemo, I wish I could come out and help you.

Lagata, I was told the same thing as mkenna -- the white (mine was grey) is dead skin - mine was all back to normal within about 2 weeks after radiation finished (well, it is still swollen ~ 8 weeks later, but not discolored anymore).  My chest just aches most of the time (like the ribs) -- worse than after the lumpectomy ... weird, and I don't like it much ;-).

I  miss you all!!  big hugs! 

sbelizabeth

Hi, BL!  What's the news with the job offer?  Have you decided to take the plunge?

After some experimenting with the mepilex, I figured out why it just wouldn't work on the largish burn.  It worked great on the smaller, dryer ones on my chest and neck, and they're all healed up and gone, but the one on my back is just...wet.  It's like a red, unroofed blister on your heel, only bigger.  The oozie aspect of it, even without aquaphor or cream, makes it too wet for the mepilex to stick.  Alas.  And here I was all peeved with my RO's office because they didn't stock it.  It was sure great on the other owies, though.

Kane's doing great.  She's already finished with chemo #2 and is only dealing with a little fatigue.  She's adjusted to wearing her wig and looks adorable in it.  She's scared, of course, but her attitude is positive and she's insisting on maintaining most of her hours at work.  I'm very proud of her. 

I wish you could come out, too!  We could languish in the ocean breezes at the beach and forget about cleaning the bathroom, job responsibilities, and especially BC!  Sorry you're still dealing with chest aches.  This seems very weird to me, that you'd be having pain like this so late after the lumpectomy and rads, but if your RO has seen you and given reassurance it must be just something to wait through. 

Lagata, hope the weird nipple clears up soon.  That must be very disconcerting!

Have a great Sunday, everyone.  I'm going to have a lovely bike ride in the cool of the morning, and then I'll have to go pick the tomato worms off my plants.  Ugly buggers.

Goodie

Hey Gals - just been lurking these days.  I miss our daily chats.  It's weird being done active treatment and just waiting for my DIEP surgery. 

BL - that's exciting to have the job offer!

Mckenna - sorry about your lab work.  UGH!

SB - glad to hear about Kane.  I think about her often and hope she's doing okay and you too.  I read your blog and what your DH said was so sweet and amazing!  You are so lucky to have him!  I too feel that way about meeting someone who had breast cancer like mine.  I check out the bottoms of posts all the time and how far along they are.  I know in my heart I just need to accept that I've done the best that I can for treatment and start living. 

sbelizabeth

Thanks, Goodie, your philosophy is spot-on.  I'm waiting for DIEP, too, and I don't want to spend the next six months doing nothing but worrying.  "Start living"!  Yeah!

mckenna

my co-workers threw a "boobapalooza" lunch for me and the other girl in the office that also finished active treatment this summer.  it was so funny, all the food looked like boobs and they had a sign that had the top 10 uses for boobs.  and at the bottom it said to honor M & C and "the girls". your attitude and strength throughout treatment is to be celebrated.  it was so nice and unexpected.  they also played clips from "boob" themed episodes of 2 & 1/2 men (there were several ).  i wish i could figure out how to upload photos to here so you could see the food.  if anyone wants to become facebook friends, send me a private message.  i could show you pictures that way.

BLinthedesert

Hi Ladies!!

mckenna -- how seriously fun was that!! So cool!

SB -- so glad that Kane is doing well -- and glad you are doing well too.  

Goodie -- hope this part of the wait is more enjoyable than the others.

I have accepted the job offer -- I have to finish teaching my two classes this semester, but will start part-time in October, and then full-time in December.  I am very excited (and nervous!).

I miss seeing your daily updates, please know I think of you all often!! 

STLmom

I just wanted to say hi to everyone. I can't believe summer is winding down. It has been quiet a summer for all of us on here.

We are heading to Glacier national park on Saturday. We had planned the trip a long time ago. I was not sure it would happen but I am getting excited now. I hope everyone  is feeling okay. How are you guys doing with the estrogen blockers?

sbelizabeth

Hi, STL.  Femara's going ok, the only SE I can perceive is the occasional hot flash, and I had those before.  Have a fabulous time in Glacier!  I love, love, love it there!

Jerry and I are swapping around ideas about where to go when this whole paducah is over with.  Something to look forward to.

STLmom

I think a few hot flashes are are my SE so far but they are not bad.

SusannahW

Sbelizabeth, that's grat news about the femora-I start on Monday.

sbelizabeth

Happy Friday, everyone!

BL, I knew you'd take the job!  When you start part-time in October will you be training your replacement where you currently work, or will you have a bit of free time?  You'll be great, and we're very proud of you!

I've changed jobs quite a bit in my career as a nurse, and I've learned to be patient with myself in the beginning, especially with administrative work.  It just takes a while to learn the ropes.  When I accepted the position in which I'm currently working, my best friend and her husband painted my new office in the colors of my choice.  Three walls are light green, one wall is thunderstorm light blue.  I found some light green, sheer Belgian linen curtains at a Restoration Hardware outlet for cheap, and now I have a peaceful, beautiful grotto in which to work every day. 

I saw my RO yesterday.  He's pleased with how my skin is evolving.  Although I can't perceive it on a day-to-day basis, the hole is closing.  I'll probably be applying ointment and mini-pads for the next few weeks still, but progress is being made.  Yay!

Susannah, think of the Femara as an anti-cancer pill.  Whatever side effects you experience will be manageable and you're starving whatever cancer cells might be thinking they'd like to party a little more.  Blessings and good luck.

STL, tell us all about Glacier when you can!

Mckenna, I'll send a PM so I can see the boobie food.  What a creative thing to do.

It's finally cooling down a little.  Bike ride in the morning.  Have a wonderful weekend, everyone.

SusannahW

Sbelizabeth, thanks for the encouragement.

Congratulations on your wound progress, at last the end is in sight!

BLinthedesert

Yea ... I am so happy that the darn hole is closing SB!!

Thank you so much.  I am really nervious, but excited, about my new job.  There is not really much training in academics ... my current job is 50% teaching and 50% research.  The 50% teaching is "hard" money and the 50% research is "soft" money (meaning it is not guarenteed, I have to write and participate in grants to get funding).  No one ever really "shows" you how to do any of these things, you sort of learn by making lots of mistakes along the way .  So, I have to finish out the semester with respect to teaching - I am teaching two courses (one for phd statistics students, and one for mix of phd/ms grad students - not necessarily statistics students) - but I will leaving my research piece and spending that time at my new job.  It is going to be really really tough until December, and then I will take some time off before going full-time at my new job.   I will be doing more "management" than I do now (mentoring students is different, I am assuming) - so that will be super different.  The other stuff will be very similar to some of the research I do now.  I will be working with groups both within this company and with outside pharmacuetical companies testing diagnostic tests that will be used to direct treatments (HER2 is one of the diagnostics that the company that I will be working for has the patent for -- and as you know, it is so important in the fight against breast cancer -- and stomach cancer!).  

Enjoy the cooler weather!!  It is still really hot here, but the mornings are a little cooler, so it is more tolerable when I run!!  

Happy weekend ladies!  Carry on and be strong! 

mckenna

Yea SB!  still thinking of kane and hoping things are going well.

 Bl, congrats on the job and you are so adorable.  glad you got to see the boob food.

saw pt last thursday.  there are 2 certified lymphedema specialists at my hospital so i will see one or the other twice a week for 4 weeks.  she was not surprised (as everyone else has been) that i have having swelling issues even though i did not have lymph nodes removed.  it was a weird sensation, i could almost feel the fluid draining to the lymph nodes in my back.  i have to wear this odd pressure thing in my bra and she wants me to get a compression sleeve even though i don't have swelling in my arm *yet* i guess we will discuss it further friday at my next appt.  there still seems to be the same amount of swelling in my boob so i am not sure if it will ever go away or once we get to twice a week (could only get in once this week) it will start to drain better? 

well i guess my nasty attitude about my brca testing got everyone moving because the results of who they want to test further came this weekend.  they want to test my parents, my grandma and my maternal aunt (who had bc at age 42). 

i also called my mo to request blood work prior to my appt so that i can discuss results because no one can seem to call me back about anything and the np says, you aren't scheduled for blood work.  huh????  then she says, unless you started tamoxifen?????  what she told me to take it two weeks post rads, if i would have known i had a choice  i swear the right hand does not know what the left hand is doing.  and this is a top 10 cancer hospital i would hate to see a lesser hospital??? so now they have be coming in on the way to work the morning of my appt.  they better have that blood work done by my afternoon appt or i will be livid!

not much else going on here.  kids started back to school with full days today as long as the weather stays cooler and they don't have noon dismissals due to heat. 

susannah, i agree with sb, you have made it through the rest of this treatment, you will make it through this.

stl, how are you liking a little cooler weather?

hugs to all i have missed!