Winter 2013-2014 Rads

QuirkyGirl

Thanks Miminiemi!  I found calendula baby face cream and diaper cream by Welada. Was it either one of those?

ellenkc

Hey Quirky -- You asked about radiation reddening and fair skin. My RO and the techs at the hospital tell me there is little to no correspondence between skin color and the extent to which radiation cases redness. I have burned and peeled all my life with exposure to the sun, as I am quite fair. But this time around, I barely got red until right at the end of treatment (21 doses). I was more red last time, with 33 treatments, but didn't blister.

Ellen

QuirkyGirl

Yay!!  Thanks Ellen!  I burn through sunscreen. Lol

Palameda

Finished 20/25 today. I got awfully discouraged the last couple of days after all the "radiation is a piece of cake after chemo" talk. I'm not finding it as such. I guess it's good I complained about the pain since the RO pulled out the silver cream for me. My poor blackened nipple can't stand even a shirt touching it, driving over bumps in the road is painful, and I've developed an irritated rash all the way up to my neck. The doc claims he isn't radiating up there and it must be a sympathetic reaction to the skin problems below. He's sort of an old-school guy, tell them as little as possible type.

I complained to the social worker that I wished I'd just had a mastectomy so I wouldn't have to go through this. She explained that some people really do breeze through rads, so they don't like to emphasize that some of us don't. I was just whiney and angry today. I expected chemo to be a sojourn in hell, so I was surprised when it wasn't 24/7 torture. I managed to stay positive. Radiation was presented as not bad, so I'm psychologically unprepared, and feeling negative. Oh well, this too shall pass. I think this has just been a very long road and I've had it. My physical and psychic reserves have turned up empty.

desalonde

Pat Alemeda, Sorry you are having a hard time with Rads... only 5 more to go.... I was fortunate to pull a lower onco score of 12 so no chemo was advised. You have been through a lot. Just a bit more to get done. Come back and vent all you want! I had a RO who was old school and had to pry the info out of him.... very frustrating and increased my anxiety a lot so I sympathize. post and say how you are doing.

LanaM

dragonfly, Ellen and any other TN - you may also find the board "calling all TNS" on the TN forum helpful! 

Frankenfinger08

Just finished my last regular rad treatment and tomorrow I start the boosts (with 5 total).  I can FINALLY see the light at the end of the tunnel!

lauriekaiser

Ellen and Charger, thanks for your insights.  I will talk to my employer about a flexible schedule.  Ellen, I am so sorry about your husband's passing. That grief is just terrible.  You'll be in my prayers.  sbp1952, thank you for the bra information.  My left breast is starting to burn so I've been looking for a bra that's comfortable that gives support. (my girls already hang low enough. they need all the help they can get.)  You all are such a brave and strong group of ladies.  Be good to yourselves.

MinusTwo

Finished week 3 today - 15 days down.  Two more weeks to go.  The skin between my collar bone & top of the implant has bumps & has been itching & is now burning.  I've been using only Miaderm so far.  RO said it's inflammation of the hair follicles.  I was hoping for Silver Sulfadiazine or Elocon to start now as a preventative, but she said no - double up the Aquaphor or use Cortisone 1% in small patches only.  Also have some pain & swelling from the side mid line to the bottom of the implant and between the upper side implant & my arm.  RO says it is radiation related and to take ibuprophen - and keep doing my stretches at least 3x a day.   And yes, very tired. 

Congrats to all of you who have finished.  Your thoughts & comments have been extremely helpful.

LizzieK

Hi 

I finished my one week partial treatment on February 24th and have had some soreness especially around the nipple but no peeling.  That nipple is quite a bit darker than the other one. I wonder if  this will change with time or be a permanent SE.  Still getting over a head cold that's lasted over a month, so I will wait till next week to start the Tamoxifen.  I am a bit more tired but can't tell if that is the head cold or the radiation.

That let down feeling is normal after finishing treatment.  I had the same feeling the last time I got radiation three years ago.  During treatment you are the center of attention; the doctors, nurses, family, etc.  Afterwards there isn't the same attention.  Your family just wants to get back to normal.  I actually felt a bit sad that my treatment was so short this time because I didn't get to meet as many wonderful people as the last time I had treatments for 7 weeks.  I guess that is the silver lining of having cancer.

Miminiemi

Quirkygirl - It was labeled lotion, but I'm sure the ones you found would be just fine.  It is a well know German company according to my friend who grew up there.  The lotion is very liquid, so face cream might be a little thicker.  But who could argue with face cream for babies.  Mine did not burn when my skin was a little raw right in the crease beneath my breast and the nurse advised that the cream the doctor provides would burn raw areas.  She suggested aquafor for that little area, but the Calendula was fine.  I figured if it didn't burn a raw babies behind, it probably wouldn't burn me either!

Mayanne

I just had my 19th out of 33 treatments, 5 of which (I believe - just haven't heard for sure) -  are the boosts.  I had the sim for the boosts yesterday.  Has everyone had sim for boosts?  The nurse told me that some RO's don't require them, but mine does.  I was kind of irritable, seeing the CAT machine - it was my third CAT scan in three months (having had one for an incarcerated hernia in December.)  I moaned to the tech who said matter-of-factly "Well, that's how it goes sometimes, unfortunately."  The doctor, too, made light of it and said it's "low dose".

I'm in the middle of my fourth full week (started on a Friday and will end on a Tuesday) and my breast is only slightly tanned.  The RO and nurse yesterday seemed amazed and asked what I use (Eucerin).  But this morning in the dressing room I noticed a red raised spot in an area I might have been neglecting to cream - low and to the outside. And I seem to remember my little robotic friend moving over to his second position very close to that particular area.  It doesn't hurt, but (so I'm very grateful to those of you who've mentioned it.) I'll speak to the nurse tomorrow - maybe I need the silver Rx to keep it in check. I looked for our Bag Balm but couldn't find it and used Lip Medex, instead.  That little blue jar always heals everything for me (although not for my daughter - I think it depends on skin type.)

I read in my mother's journal that she wrote in during her radiation in 1978 - that her skin was fine all during her treatments but the following week, she began to peel. 

About fatigue, Red.  I don't work and I'm sure that adds tremendously to your energy levels.  I'm making my treatment my work right now.  But I DO notice that some days as I'm leaving the clinic, I feel that I weigh about 400 pounds - as if a huge hand is pushing me into the floor - or as if I'm trudging through invisible water.  It's not sleepy tired - I wish it were.  I don't go to sleep any earlier than usual.  But, fortunately, the heavy feeling doesn't last long - maybe an hour or so - and then I'm normal again.  The grouchiness which I can't blame on any kind of psychological issues - comes out of the blue and leaves after I get it out of my system.  I'm convinced it's physiological - my own body's reaction to the invasion of the beams. 

Best wishes to all of us!  I finish four days after Spring begins!

Palameda

Yippee for silver cream! I've got 4 to go and was soooo discouraged Tuesday. I was swollen and blackened and peeling down to tender cherry-red skin. Yesterday the RO took pity and brought out the good stuff. Overnight after getting the magic cream it looked so very much better, and I can see tolerating the rest of the treatment (especially with a weekend in there to recover). I also got my port out this morning, so I can now take ibuprofen to take down the inflammation. 

TeamKim

Hi everyone -- just read and caught up with the posts.  I took a one day break and had to work last evening too.  Made for a long day and I was really tired last night.  

I have some pain in the boost area, but otherwise my girl is looking more normal ... Very brown, though, and peeling in some places (though not in sheets like with sunburn, just kind of like a very thin layer wears off and the skin underneath is pale pink and new).  

Pat, my Lumpies friend, I am so sorry to hear that you are discouraged with rads difficulties.  You have been through so very much, and you have persevered.  I find it amazing that you still have enough energy to put one foot in front of the other.... But know there is not too much more to go, and you will find the strength.   And the silver cream is miracle stuff!  I was feeling pretty bad until I got the magic Rx, and can point to the one evening when I just lubed on 100% aloe, then Miaderm, then Aquaphor, then Silvadine, with about a ten minute soaking in period in between each, then put on an old t-shirt, took two Motrin and an Ativan and went to bed hoping for the best.  I slept through the night and it all looked so much better in the morning.  I hope the same is true for you, and you get through the last treatments with the help of the silver magic and the healing can begin in earnest!  ((((Hugs)))) to you!

Lilyluv

Tomorrow will be 1 week since finishing and the fatigue has been the worst so far this week.   One of the nurses said to start using this sample bag of Aquaphor, miaderm cornstarch and aloe topical this week.  What are these and the cornstarch supposed to do?  Are they to prevent eventual peeling?  They don't seem to do anything and the miaderm is scented which makes me itch worse so I stopped using it after trying it a couple of times.  Aquaphor is like vaseline which doesn't provide any itch relief so I stopped that.  The natural healing stuff with aloe provides a little relief but it's a tiny tube and supposedly a little goes a long way.

The nurse had looked at my breast a couple of weeks ago and said it looked good when I first mentioned burning. Since I have light olive skin, I burn with a pinkish/tan so it's not easy to see unless you're in certain lighting, so of course it doesn't
look that bad but it burns quite a bit especially in the evening.  Back then that nurse said to use cornstarch. So I used it.  No one has examined my breast since treatment started other than when I asked the nurse a couple of weeks ago to take a look.

I also have had a red slightly raised rash on my upper chest - looks like pink freckles and is itchy.   Is there any OTC stuff that helps with itching and burning like Lanocaine that's OK to use at least in the evening?  The other stuff doesn't seem to be helping.

Last nite my nipple itched and it looked like there was just a tiny bit
of skin flaking off and there is clear fluid inside it.  Is that anything to be concerned about? 

Miminiemi

Lilyluv - Try 1% hydrocortisone cream on the red rash.  I had the same thing.  When the hydrocortisone wasn't enough the RO approved benedryl gel 2.5% for the itch.  I was ready to tear my skin off.  

About the aquafor and other lotions, they keep the skin soft so healing will be easier later I think. I think it also prevents the skin getting itchy to some extent, but doesn't control itch on that rash. They told me to continue even after rads were done.  Now my skin is just peeling in tiny soft balls of old skin revealing new skin beneath.  The cornstarch helps keep you dry to avoid skin rubbing on skin when sweaty.  The domeboro soaks are astringent.  Astringent tightens the skin and helps hold it together.  Since your own skin is the best bandage on top of new skin (even when it is damaged) I think it helps hold it all together as long as possible. 

I finished rads two weeks ago and was the most itchy the last few days and about a week after.  Now I'm back in my bra, no itches, and new skin looking good next to old gray skin that is pilling off like wool on an old sweater.  Hope this helps.

TeamKim

Lilyluv -- great explanations from Miminiemi.  The only thing I would add is that if you can find 100% Aloe Vera (not the green stuff for sunburn -- it has other additives), I have found it to be helpful.  It has a cooling effect on the itching and it dried without leaving you greasy.  I bought my Aloe gel for $8 through Amazon, but I heard there is an inexpensive variety at Walmart.  Aloe is one of the primary ingredients in Miaderm.  

Lilyluv

Thanks so much Miminiemi and TeamKim!  That's a big help.      We've got some OTC hydrocortisone in the bathroom and I think our local health food store probably has pure aloe. This natural healing stuff they gave me is a gel with aloe vera and hydroluronic acid (sp).   It does help cool for a little while at least.  The tube is about the size of a little finger so it's not going to last long.   I also just put some neosporin with pain relief inside my nipple and that helped some.  Really amazing how everything flared up so much this week.  Things were going pretty good and then it hit.  My nutrition has been the pits since getting tired too which doesn't help either.  Gotta work on that.

TeamKim

Lilyluv -- I used the Neosporin with lidocaine on the itchy red spots sometimes -- I told my RO, but he neither said OK nor No, but it did give some relief.  Good luck with the flare up.  

annika12

25 full done, plus 3 upper shoulder extras total 28 and 4 boosts ......4 more next week then yooohoooooooooo done !!! The back of my shoulder is dark tanned, armpit and collar bone light red and I'm thinking by 4 more I'm gonna be pink breasted too !! No pain or itching just a little burned !!! I am a bit fatigued but I also got a head cold , helped a mama goat dry her babies in a -5 barn I think put my poor body over the edge!!!  Tea, soup, blankets  and dome HGTV for me this weekend

Palameda

Thanks for the encouragement, TeamKim. Funny how we started our "journey" at the same time and are ending nearly simultaneously, despite my being stuck in the infection cul de sac for a couple months. This was my first real meltdown of the entire time, so I figure I deserve it! Two more rads next week and DONE DONE DONE! "All" that will left is 5 years of aromatase and getting my bmi below 25 and exercising 5 days a week. By my calculations the bmi and exercise do as much to lower my recurrence risk as the chemo. Talk about a lifestyle change: I'm a curl up with a book girl: ahem, WAS...

Jmfrankel

Lilyluv,  I concur with getting aloe.  Only other thing that may help too is oral Benadryl.  I never got itchy so don't know how well it works but that is what my RO mentioned to use if I ever got to that point.  

Question for everyone....anyone have their blood counts drop on radiation...like chemo?  Just got checked yesterday and my counts are low again (even though I finished Monday). I have low WBC, hemoglobin, platelets, and most concerning neutrophils.  I am at 0.7 on neutophils and if i get to 0.5 they consider me to have neutropenia.  They told me not to leave my house and if I need to I should wear a mask.  Will get checked again next Tuesday but if counts are still low they said I would have to cancel my trip to NY:(.   Hoping I start to bounce back by then.  Very weird but I have had more trouble with my blood counts during radiation then chemo!  My RO says he has never seen this happen before because of rads....but then again they never want to admit the rads causes problems. 

checkers

jmfrankel, very interesting that you had blood counts done during radiation.  I never did but will have a CBC done before I see my MO next Thursday.  

10 days since my last rad boost and everything except the tumor site has healed but that is looking really good and should be healed within the week.

I see my MO next week to start Arimidex.  I've heard horror stories about SEs from Arimidex but I'm going in with a 'can do' attitude.  

I took the afternoon off and I'm going clothes shopping today for the first time since I started rads.  I'm heading for Florida at the end of the month and need a new swimsuit and some capris.  Unfortunately, I put on about 15lbs from chemo and haven't been able to lose it.  Thus, last year's suit and capris no longer fit!

MinusTwo

JM - Weird - my RO also said rads would not cause low blood problems.  But...  I had blood work after two weeks before my Herceptin infusion, and sure enough my WBC, RBC, Hemotracit, platlets, etc. were all down just like yours.  I'm not scheduled for another Herceptin infusion until after rads so probably won't get more blood work, but since it's happening w/you I'll watch how I feel.  Wonder how you tell rads fatigue from low red cell fatique?  Must be time for a nap.  Hope you're counts start back up soon & your trip to NY isn't compromised.

peaches12

Hi all, Just stopping in to say hello to familiar rad friends and all you newbies, too. I finished rads 3 weeks ago this coming Monday and frankly now it's just a memory.  I was so lucky having had no problems with it during or after, just some reddish brown skin tanning which is about gone now.   I have 2 more Herceptin left and will be starting on hormone therapy when I see my MO in 2 1/2 weeks.   

However......I have already started the post-treatment blues.  Some days I feel great, then the next I am terribly depressed and an anxiety-ridden mess.  Those days all I see ahead is worry and more worry ahead waiting for disaster to strike. My lymphedema physical therapist said this is so normal and she doesn't have one post-BC treatment patient who isn't on an anti-anxiety med for awhile until they adjust to the new normal life.  I'm going to get something when I see my MO and may even call her nurse before that. I looked in here the other day and saw the rec for the After Breast Cancer book and have gotten it. Special thanks to whoever recommended it (too lazy today to look back).   I spent a year waiting to get my life back and now realize it's never going to be the same life.

One other thing my lymph therapist recommended. The rad area will tighten up several months after rads end and she tells her patients to get a massage ball (looks like that small pimply dog toy, sold in sporting goods shops) and lightly massage the rad area for 5 minutes a day.  Because I had double mastectomy w/ no reconstruction and have no breast to roll the ball on she told me to get a straight little pimply massager with a handle, easier to hold.  She said it works wonders to prevent the skin tightening. I do it for 5 minutes going to bed, so no big deal. Just an idea that might help someone else. 

Jmfrankel

minus two...I am on herceptin too.  Wondering if my low blood counts could be from that instead of the rads?  

Checkers... Probably not everyone gets their blood counts done with rads.  I get them every 3 weeks before my herceptin infusion .  My mo noticed them going down so started testing me every week.

Lilyluv

Thanks TeamKim and JM for the suggestions. 

 Annika12  bless your heart for helping mama goat and the little ones! 

JM and MinusTwo, the RO didn't do any blood counts, but my pain management doc said she wouldn't treat me until she got a recent blood test during rads.  My blood counts were low also...nothing dramatic like yours, but still low.  I honestly don't know if it's from rads or if they were that way since last year.  I asked the RO and he said that if anything will be affected by rads, it would only be wbc counts (with the added comment that he doesn't happen often, but I suspect it's common).  He couldn't explain the rbc counts though.

Peaches I'm getting down too but just from terrible fatigue.   Got so down I  just dyed my hair black on an impulse.  Looks ridiculous - hubby said I'm too old to go goth, but I have no interest in going anywhere so no one will see it except him, and he's used to me looking like a hobo by this point.  At least it's a change of some sort to break the monotony.  FINALLY got my depression meds worked out last year and this is a deep slide backwards. Have had insomnia for years even with different Rx's and OTC's which doesn't help either.  It's a multi cup of coffee battle to get on the treadmill 3 times a week but exercise is supposed to make you feel better (really?).  Finally got too tired to bother with finding stuff to eat that is appealing and finally gave up this week.  Today the menu was jelly beans and cereal and a banana.  Got tired of yogurt and cottage cheese and steamed bags of veggies.  Add to that a very sick little ferret that needs intensive care right now and hand feeding.  Theoretically, no one seems to know the definite cause of rad fatigue, or how to fix it which is so frustrating. Just hope it goes away in a couple of weeks.

positivenegative

30/35 so far in the home stretch!

JKOmaha

Question for you all. 

Which doctor recommends rads if you need them?

I've not seen an RO only my MO. My MO has never mentioned rads. Do I need to find an RO to see if I need rads or would my MO have told me if I do or not?

peaches12

JKOmaha-  Your MO is in charge of your overall cancer treatment plan and makes the final decision as to the treatment you will get.  He/she of course may consult with an RO for an opinion as to whether radiation may be needed, how much, how long, etc.  But the MO is the decision-maker for your long term care.   If rads are needed the RO will then be in charge of your rad treatment.