Winter 2013-2014 Rads

Mayanne

I'm one of the almost done's!  I have 7 left - 3 whole breast and five boosts.  Some days I'm much more uncomfortable than others.  I'm so red, I'm almost blue.  I was using regular Eucerin, but when the RO found a tiny hole in my skin in an "under" area where I couldn't see it, he told me to use Aquaphor and will give me a prescription if it doesn't get better.  Most afternoons I hold my clothing away from my skin and try to not create friction by walking around.  The tech today said it must be painful by the looks, but I describe it more as tender and uncomfortable, rather than painful (crossing fingers).

Yesterday, while I was at my treatment, my husband invited my DIL and whole family (including her Mom who is visiting from Spain) for a big St. Pat's Day Irish dinner and told me after the fact!  He had planned to do the cooking, but hadn't realized I've been getting more uncomfortable.  I'm trying to figure out how I'll be three days from now and if I can maneuver around with company in the house. (I can't see myself holding my clothes away from myself!)  I can't wear a bra, of course, because of the band, so I'm thinking of cutting the cups out of my athletic bra which was extra large - maybe one of those would create the space I need around my skin?  But how to hold it in place is the question. 

As far as fatigue this week - I'm not sleeping any more than usual - but I realize I have the absence of my usual energetic-ness.  I usually have a long list which I tackle and take great pride in crossing off accomplishments.  These days all I cross off is "going to treatment" and two days a week "going to the gym"!  Not bad, after all, though!

smrlvr

I had my first radiation treatment today and I have a few questions for you experienced ladies.  First, they said that a small portion of my lung would be hit by the beams. Mod any of you have that?  Will there be any side effects if a small,portion of my lung is radiated?  Also, my RO wants me to use aquaphor and 100% aloe only.  Where can I find the pure aloe?  Could not find at local pharmacy.  Thank you!

Bec65

Smrlvr, my cancer was on my left side too, and they have me take a deep breath and hold it for each zap in an effort to protect my lung and heart as much as possible.  I was given samples of Miaderm and Aquaphor.  Miaderm has aloe in it, and I got it by going to its website and finding a pharmacy in my area that stocks it.

Mayanne

My RO showed me on the computer how a small portion of my lung would be exposed, too.

He said there was no way around that.  My heart is blocked, but evidently a sliver of lung couldn't be blocked.  I'm not sure if that's the case with everyone or just some?  I had my 26th treatment today and so far, have no issues that I can tell with my lungs. 

Good luck - you're on your way!

ellenkc

Smrlvr: I've had rads on both sides now, the left side 8 years ago. RO said that there would be a slight radiation of the lungs, but that "you won't notice anything unless you are an Olympic athlete." Eight years now and no cardiac or lung complications. -- Ellen

LizzieK

It is a bit messy but the best source of aloe is straight from the plant.  You can buy fresh aloe leaves at Whole Foods and Asian markets.  It lasts a couple of weeks in the frig.  Slice off a 2 to 3 inch piece and slice off the prickly edges and then slice in half to get the most surface area.  Just take the leaf and smear on the gooey liquid on the burnt skin which feels real good especially if it's chilled.  It drys in a couple of minutes and there is no residue.  I used fresh aloe on really bad radiation burns and it really helped.  My RO recommended Calendula cream which also worked well.  I put it on after the aloe drys.

Lojo

I have seen big green bottles of pure aloe (or pretty close to straight aloe) at our pharmacy (CVS).

My RO gave me something called "Radiagel" which was mostly aloe that I used from treatment 5 to 15. Today (#16) they switched me to a new lotion "Biafine" which is more emollient (and smells a heck of a lot better and doesn't cause my shirt to stick to my skin. She said to keep the radiagel for the next time anyone had a sunburn.  I'm not sure if I'll graduate to something else in the last week or not. 

I didn't ask specifically about my lungs, but my RO said they're protecting everything as best they can. They had me try the breath holding during the planning session, but I guess it wasn't necessary - the techs said that because of my particular physiology and position of everything the breath holding wasn't needed. 

I'm at #16 out of 28, and my scar line is really the only part that looks a little cooked. The rest of the area is dry and a little tan, but not too bad. 

I'm getting a little tired in the few hours after treatment, but it's not overwhelming, I just am a little unfocused and have trouble working. I've taken a few cat naps. 

MinusTwo

Smrivi :  Aloe - Look for Fruit of the Earth 100% aloe gel.  I got mine through Amazon then found it at HEB market.  Also using Miaderm which I got through Amazon.  It's expensive but obviously works since I've had 21 treatments & skin has not broken down yet.  RO wanted only Aquaphor & Aloe too but she agreed when I pushed for Miaderm.  I have itching & it feels like a sunburn, but nothing worse.

As for lungs - I'm having tx on the right side.  RO said there is no way they can totally block out the lungs but the exposure should be minimal.  And I don't see another option anyway.  I hope I'm as lucky as Ellenkc, but I smoked for 40 years (quit in 2007) so I already have lung damage.

Pam358

My RO gave a similar response about the area of the lung being radiated that it wouldn't be any real issue. However, he did say don't panic if someone down the road says that there is "something" we found on your lung. He said I should tell them I had radiation and where and that should probably clear the suspicion. 

TeamKim

Hi Radiants -- I have been grading papers for a couple of days, so I just read the last two pages of posts....

Pat -- so sorry for your burns, sweetie.  My goodness you have been through the wringer!  Now that the torture is over, you can get to healing and put it behind you.  I wasn't posting, but was (and am) in your pocket (((squeeze))).  When you are ready, pocket party is in order!!

MinusTwo, Red & Mayanne -- hang in there, light at the end of the tunnel at last!  Make sure to tell your team what you need from them to help get you through the last days.

Mayanne -- maybe try a camisole -- I have been living in three Jockey camis I bought during chemo.  They are made out of the control stretchy stuff (like Spanks, but not so tight).  I find they give me a little support, but don't squish the girl and keep my shirt from causing friction.  Lol about your DH planning the St. Paddy's soirée -- good luck with that!  

Smrlvr -- I was told a sliver of my lung would be exposed as well, and it is unavoidable.  I asked if scar tissue might build in my lung, and RO said maybe a little, but it would not be noticeable.  I bought my Pure 100% Aloe gel from Amazon, but I heard Walmart also carries it.  I keep it refrigerated.  Don't use the green stuff they sell everywhere for after sunburn because it contains some drying agents and even alcohol in some cases.  You want the pure stuff.  Miaderm is pricey, but a good product.  You can buy that through Amazon as well.  

Lojo -- see my note above about the green aloe gel they sell everywhere.

Update -- I am 10 days past last rad, and pain free at last.  The area of my boost was sore until yesterday.  Outside of the boost area, the rest of my boob has peeled mildly, and settled into a nice suntan -- if only my fluorescent white body had a matching glow!  One spot in my scar is kind of red, but strangely, after the peel, the rest of my scars are less noticeable than they were before rads.  Another interesting thing -- I had a lot of small moles on my breast which grew larger during chemo and rads.  Both MO and RO said not to worry, so I didn't.  Most of them have either peeled off almost entirely or have shrunk since rads ended....  Weird!  

annika12

Im done Boosts and all I have ONE very nicely tanned boob that's all !!! The boost site is still a little pink but no pain or itching !!! Now on to healing detoxing and living life !!! A little spring would fit right in with my mood for new beginnings but I live in Michigan and the cold and snow is still here !!! Hang in there ladies who are still finishing up it will be done soon !! These board have helped me so so much from that first night, fear full and sleepless through testing, chemo, surgery, rads and hormones .......

Lilyluv

Congrats Pat! 

 And it's good to hear that a few of you are on the finish stretch!  It's 2 weeks after finishing and NOW my skin decides to get red.  My armpit is red under the stuff peeling off and feels like someone is holding an iron to it.  Aloe helps at least for awhile. Things are turning a nice rosy color that weren't before.  No wonder they used pink for a breast color ribbon. :-)   

JM I hope you find some relief for that cough.  Can they prescribe you a cough syrup with codeine to suppress it?

Red that sounds like a miserable position.  I didn't have arm stirrups thankfully.  They made this lumpy hard cast I had to lay my head in.   Funny how they all use different apparatus.

One thing that I found helped my arm from going numb was wearing a glove on that hand - sometimes with one of those little handwarmers or something in it to squeeze.  Also having the nurses place a warm blanket on my arms helped.

RedReading

Thanks for the advice LilyLuv, but guess what?

I am done my full breast rads!!!!!!!

Only the boosts are left now. Omg, I'm one of the almost dones! 

To those just starting or about to, I am totally with you on the 'when will this ever end'. But it does. The ladies here have supported me through some pretty dark moments. I wouldn't have made it with my sanity intact without them. (Of course, I guess that's if you consider me sane, bahaha).

Can you believe it's almost over? This has surely been one of the longest months of my life!

Thanks again everyone!

TB90

Great news for those of you who are done or are in the final stretch with boosts.  I have 9 left and have just started to become pink instead of tanned and a bit itchy.  Came home with a hydro-cortisone cream today and with the weekend, hope my skin recovers a bit. No pain though thank goodness.  My wonderful physio-therapist told me that the most underrated medical conditions that cause such agony are nausea and a bad itch.  Funny how they are hallmark SE's of breast cancer treatment!  

Lilyluv

TeamKim, It's good to hear that your pain is now gone!  Free at last! Glad you mentioned those moles. I was a little worried about that.  

Red you're almost done....just don't get "well done". hee hee

Got the same opinion about the lung exposure.  The RO said it wouldn't cause a problem. 

lojo if you have a health food store nearby they usually sell aloe too but it might be more expensive.

MinusTwo

LilyLuv - great definition " feels like someone is holding an iron on my skin".  That's it exactly.   I find that cortisone doesn't help much with the burning OR the itching.  I agree that Aloe works for a short while.  My RO wouldn't approve Elocon or Silvedene.  She's really conservative about drugs. She did approve Domeboro compresses 3x a day.  Thanks to Mimi for that recommendation.  

Only 3 more treatments!!!  Now I just have to manage to stay asleep for more than 2 hours at a time for the next 5 days.  Might take a Sonata tonight.

Rads14

Hi ladies,

This is my first time doing a message board but very thankful to be reading all of your posts. I am in the midst of accellerated radiation and just finished # 8 of 16. I had a lumpectomy in January.   I have been lucky because I work from home and the treatments are about a mile away. I have been feeling pretty good and trying to exercise when I can. At this point, I do have some burning and my nipple which is right by the main target has been really hardening and itchy, but I find the cold compress has helped some. I keep very busy during the day with work and family so it seems like when I feel tired it hits me suddenly. Also, my mother in law is staying with us to help, and that is tiring as well! 

Lilyluv

MinusTwo I need to go out and get that Domeboro that mimi was talking about.  This fire is out of control.  Thanks for reminding me.  Hope you get some good sleep!

Hi Rads14!  Welcome!  I'm glad to hear things are doing pretty good for you this far.  Send your mother in law over here if you need some quiet time.  I need some decent food - does she cook?  I'm getting sick of yogurt, cereal, grapes and KitKat bars.  Well, maybe not so much the KitKat bars.  :-)   I've got the hardening and crusting nipple too, but the itching didn't last too long so hopefully it won't for you either.  Just be sure to rest when you feel tired.  It sounds like you've got your hands full there!

Rads14

lily luv, she hasn't been cooking...I actually cooked all week! But she does laundry like nobody's business. In fact I have so much clean laundry piled up in my room, she keeps adding to piles that  I need to put away! She is pretty amazing, considering she is 82. I do like the laundry service. Just need a bit more alone time too, from everyone in the house. Hope you get a full nights sleep!

Lilyluv

Rads14,  darn I was hoping she was a good cook... wow she must really like to do laundry!  That's nice that she is willing help out where she can though.  As long as you can find the kids under the piles of laundry! :-).  

Miminiemi

I sure hope the Domboro helps others like it did me.  Let us know minustwo and Lilyluv.

ellenkc

Lilyluv -- So funny that you would mention KitKat bars. I absolutely craved them through chemo and some of radiation -- even when nothing else in the grocery store appealed. Must be some magic in them thar bars! Fortunately, I was losing weight even if I succumbed to the craving. -- Ellen

RedReading

OMG - huge post - said hi to everyone and the post gremlins made it go away. I've been typing the thing for the last half hour! That's it!!! I'm going for a bath!

TB90

Red:  Don't you just hate when that happens.  Hope your bath rejuvenates you and you feel like trying again

RedReading

Thanks TB90, as it turned out I had company and an just now crawling into my bath.

checkers

WOOT WOOT!! Congrats to everyone who has finished or is fast approaching the finish line!!!  

I had my 2 week follow up with my RO and her eyes almost popped out of her head when she saw me.  First, I have abandoned my wig and have an inch of snow white hair (I'm rockin' the Amber Rose look!) Second, I am almost completely healed except a little pink on the boost site.  She said I had one of the worst radiation burns (without blistering or breaking skin) that she had seen yet, I had healed quicker than someone with only a mild burn.  So ladies, it does get better, a lot better!! 

I highly recommend the Domeboro soak.  It is so wonderful at calming the inflamed skin. 

To celebrate I went swimsuit shopping for my trip to Florida at the end of the month. I found a suit with a high halter that covers the radiation site completely.  Well, except for the armpit, but that doesn't see much sun anyway.

I also saw my MO to start on Arimidex and of course, had to have blood tests.  Found out my Vitamin D level was extremely low.  Most adults have a level between 30-50, Mine was 6! I am now on a prescription mega dose once a week for four months.  Did anyone else have a drop in Vitamin D during radiation?  Maybe it was the harsh winter without much sunlight. The trip to Florida will help with that

MinusTwo

Hooray - I finished rads today.  The nicest part was I had a REAL shower instead of the waist down hand-held washes I've been having for 5 weeks.  Well I don't know.  Maybe the nicest part was I don't have to go back tomorrow & I'm done!!!  Lots of rash & bumps & some blisters, mostly between the implant and the collar bone and between the two implants.  I actually have burning & itching on my back, which I was told is normal when they're zapping the 'super clav'.  That's apparently the radiation coming back out of the body & bouncing off the table to 'bathe' the back & shoulder. I pretty much used only Miaderm with occasional Aloe gel.  I used OTC cortisone cream on small areas a couple of times when the burning was really bad.  Looking to get Elocon cream from my derm doc later this week based on a monograph that someone posted here.  The RO really didn't want to try since she wasn't familiar with the study, but I'm willing to experiment on part of the skin.

Thanks to all of you ladies for your information & support.

Miminiemi

MinusTwo congrats!  What a good feeling.  Enjoy the evening.  And tomorrow is first day of spring!  A celebration for you.

TeamKim

Congrats MinusTwo!  Pocket party in progress!!!  

Checkers -- thanks for sharing your rapid recovery.  Picturing you with your snow hair and rockin the halter swimsuit in Florida -- wiggle your toes in the sand for me!

My recovery has been pretty rapid as well -- just using the Miaderm at bedtime now (it was so expensive, I figure I should use it up!), and I am left with a pretty even overall tan in the radiation field.  Still getting an occasional "zinger" deep in the breast, but they are fewer and farther between.  I go back to my BS for a check in mid-April... It has been so nice to have no Dr. appts.  I even go for as much as 24 hours and forget all about BC!  I have a cousin who just had surgery for uterine cancer, and she has to have chemo -- she was asking me about it, and I actually had trouble remembering stuff!  I think it is like childbirth:  once you get through the experience, you mentally seal it up and put it on the shelf, and just get on with life as you find a new stable existence.

So how are all you Radiants celebrating the end of treatment?

Wish I was going someplace warm like Checkers,  but we are leaving on a 10-day, 8-baseball-game trip to see my DS playing college baseball, and I think I am going to freeze my patootie off!  They started their season with three weekend road trips in VA, but the games we will see will be in CT and New York State (forecasting temps in 30's and 40's) -- our wimpy So CA winter clothes are not likely to be equal to the challenge, I am thinking!  I have been going around sans hats with half inch of hair, but for this cold weather, the hats are out of the drawer and into the suitcase.

Take care, ladies -- and thanks for your kindness to me and to each other through this journey -- I'm very grateful for your friendship and sisterhood....

Lilyluv

Checkers, Florida sounds awfully good right now!  It's good they found out about the vitD problem before your vacation so you're fit as a fiddle and ready to hit the beach in that new suit.

TeamKim it's good to hear that your skin is on the mend and you've got
some trips coming up too. 30's and 40's? Sounds like the tropics compared
to the way it's been up north this winter.  We're going to the Smokies next month which will still seem like the tropics. LOL

Congratulations Minus Two!!  

And definitely thanks to everyone here!