Summer 2013 Rads

Ms. Study411 - as many of the other folks have already stated, RADS is no big deal.  Chemo almost killed me but I have done 12/15 RADS treatments with simultaneous boosts and have been just fine.  My skin has been OK and I have not noticed any major fatigue.  I lost my job when I got sick so I do not have to worry about missing work right now.  I HATE not working!  It is boring and ego deflating but I just have to get through these last few treatments and then the salpingo oopherectomy  then on to the lovely AI drugs.  I did not tolerate Tamoxifen and I am VERY worried about the AI's but my MO says he will find a drug that will agree with me.  HA!  We shall see.  The moral of the story is that as long as you take good care of your skin, RADS should not be that bad.  I will hope and pray that that is the case for you.

And Ms. Heart - I wear cotton camisoles that I buy for less that $6 at the evil Wal-mart.  They have a bra built in and are very comfy.  I even wear them to bed under my PJ's because I was banned from wearing my underwire bras and at 52 years old, I want my ta tas to stay perky.  All the best!

study - I felt like I had to do everything that was suggested - I don't ever want to be faced with regret.. Rads is 90% easier than chemo..as far as working, I haven't missed a day of work but did have to go home 2 days because of fatigue - had a couple other days I would have liked to be home becasue of tiredness but pushed through and was glad to be able to stay at work.

Study411--I was also thinking I would not need rads because my pathology was good after chemo and mastectomy. But the stats for recurrence convinced me that, with an aggressive cancer such as I had, rads are the right thing to do. I started treatment right after Labor Day and will finish rads on Wednesday... a long haul but I do not want to ever deal with this again so it has been worth it to reduce my risk. I get weekly Herceptin infusions through November but only have some muscle and joint soreness from that. Two days after Herceptin is finished, my hubby and I are taking off on a much needed vacation. I can go feeling good that I have done everything to win against bc. If you worked through chemo, rads will seem much easier overall. :-)

disappointed here - thought I was done on Thursday but found out today I have 6 -7 more treatments - didn't know the boosts would extend the treatments... RO ordered me some kind of cream for my burny skin, drug store has to order it and won't have it until tomorrow afternoon..

Oh Heart, isn't this the pits? So sorry you are also having further breakdown!!! Pain meds and lidocaine are the only way to go right now. This will pass, or so I keep telling myself.



I had a lot of new skin breakdown over the weekend too, and was bleeding from four spots this morning. When I told the tech this morning that the bolus had won another round, she said that it did exactly what it is supposed to do. So now I am picturing the missing skin as cancer, even though my post surgery pathology was clear, and I am trying to be glad the treatment is doing its job. Mind games, huh!



And how very frustrating for you, IamNancy!!! My heart skipped a beat when I read your post. I will try to think positive - - that your new cream will soothe you, and the boosts won't cause further problems for you. Geez!!!!



Idesim--We are 14/15ths done with treatment. I hope the week after doesn't push us over any more edges. I have had it with this. Time to put it behind us and move on toward healing.



Gentle hugs to all

Linda 28/30

So sorry IamNancy. That just sucks! Talk about taking the wind out of your sails. I really hope your new cream helps. It's a bummer they can't get it today.



Lin43- I am sorry you had a bad weekend too. This skin breakdown stuff is the pits, and it just never stops hurting. When you skin your knee it mostly stops really hurting after a few hours, but for some reason this just doesn't. Not sure why so many other women make it through with no problems and we didn't. (Yup....feeling pretty sorry for us right now)



Saw a new RO today since mine is on vacation. Turns out my nurse practitioner lied to me last week. When I was really getting beaten up by the skin issues and pain she told me not to worry that I should see some improvement by Sunday. When my skin got a lot worse this weekend I was wondering what was wrong with me that it wasn't getting better like it was supposed to. New RO told me to expect the bad areas that I have now to start getting better maybe by next week, but expect the boost area to break down pretty fast. What the h&$@ happened to starting to get better by Sunday?!?! I almost cried, and I pretty much never cry.



Feeling pretty down right now.

I can relate to you ladies having skin problems.  I had my last two boosts last mon/tues, by Friday night I was in tears from the discomfort and went to the dr today.  Without going into too much detail my nipple is fried.  The nurse told me today that this happens to alot of women and is totally normal although having all this irritation is driving me NUTS! I cant stand anything against it and the dead skin is falling off replaced with angry skin and swollen tissue.  Just when I thought it was over.    I look in the mirror and one of these things definitely does not look like the other!   and to top it off this last weekend in a restaurant I heard a lady at another table telling her friend my hat with hair wasn't my real hair, my sister mean-mugged them while I felt like throwing it in the middle of her table 

If anyone is looking for a product that doesn't have petroleum, mineral oil, fragrance or parabens, today I found Aloe Body Butter in a green tub at The Body Shop at the Mall.

Heart and Melody_-- You are not alone! I cried for awhile yesterday evening when another area broke down. I have reached my limit and the pain never relents so another area torn apart was just too much to bear. I understand your horror at being told your boost area will break down quickly now, Heart, especially since you were thinking that you are almost done with these horrific complications. Last night, to try to escape my current painful physical state, I took my Percocet, my melatonin, and headed to bed at 7:30. Then I took another Percocet when I woke up after 11. Right now I will do whatever I can to reduce pain.



My friends all tell me what a great attitude I have had through all my treatment, and I am usually tough but sometimes the tears just have to flow. The level of pain from skin breakdown has taken me by surprise, and the fear of what may still happen is very real.



I don't know why you have broken down this much, Heart. :-( My RO expected me to have major problems given my daily bolus but you weren't expecting such problems, were you? Anyone who says they did great because they moisturized the "right" way really doesn't know what they are talking about because skin breakdown is so individual -- all the moisturizing in the world may or may not help. No one should fear or feel overly confident about what their radiation experience will be like. Most make it through without too much difficulty.



I have had three boosts so far over an area that is 2" by 10".The area has become angry red and swollen. Granted, it was red before the boosts but the swelling is sudden and the color is now like a cabernet. I am broken down above and on the top edge of the boost area--I don't know how I can handle more breakdown in this area.



I have an infusion after radiation tomorrow. I'll be wearing a loose top with nothing underneath. A bra with prosthesis just isn't possible right now. The looseness of my top will hide my uniboober status a bit but like Melody's sister, I could deck someone if they made a comment about anyone's post-cancer physical appearance! They should be counting their blessings and be extra polite to some one who they think might have just been through treatment. You are a warrior Melody! Hold your beautiful head up high and be proud!!!

I lost my hair with chemo and now that it is four months later, I get loads of compliments on my hair cut. HA

!

I think I just wrote a "book". On my phone, no less. So much emotion to let out!!!



Gentle hugs and much support to all!

Linda

I'm on 31/35 with the last 7 as boosts. My skin in lobster red and sensitive but still intact. Lubing like crazy to try and keep it that way. However, fatigue hit me like a ton of bricks this morning. Feels like chemo fatigue and I thought I'd left all of that in my rear view mirror weeks ago. Oh well, this too shall pass.

Today is 21/33.  I have completely switched from Eucerin cream to Lotrimin in the crease and Fruit of the Earth Aloe Vera gel everywhere else.  I apply the aloe four times per day.  I have been using Dove unscented soap daily, so far so good.  No bra at home and any other time if I can hide the braless look with a loose over blouse or jacket.  The bra retains the heat and perspiration which makes things worse.  Tomorrow I see the nurse and dr. and they can tell me if the skin still looks okay.  The day after that is measuring day for the boosts.  I was actually able to get on my tummy yesterday for a massage so I am a happy happy girl.

I wonder if this would work for rads.....I took care of my favorite aunt in my home for 3 years, changing diapers, the whole 9 yards after she suffered a fall in her home. She had some minor brain damage and couldn't walk after the fall.



At one time after getting 5 rounds of antibiotics for a recurring UTI she developed C-Diff. She was in rehab for 2 months after another set back and hospital stay. She got a horrible diaper rash in the rehab. A bright red, raw, rash. Nurses worked on it for 2 months and it was barely better. When she came home I treated it with Aquaphor with about 5 TBS of Mylanta mixed in. The burning rash was completely gone in 3 days. The visiting nurse told me, it was the Zinc Oxide in the mylanta.

Nancy--I remember that stage when my hair was 1/2 inch and the wig slid around. Shortly thereafter I decided to go "topless". I was headed out with my husband and he asked if I was going to get a wig or scarf, and I paused and said "no"! He said no wig or scarf? And I said "no nothing" and headed out. Bless his heart, he trotted out after me and has never said a word about my hair. Now, four months after chemo, I get compliments from strangers about my hair cut. It is pretty funny cuz it isn't a cut, it's a grow-out! I just smile and say thank you.;-) Hang in there cuz sometime soon you will be able to ditch the wig and feel the freedom.

Carolyn--Thank you for your kind words. I hope your pain subsides a bit. My integrative medicine oncologist put me on 1200mg. of Turmeric (with black pepper in it) for my pain. It took about two weeks and then I felt a bit better--much more manageable. My pain is from the Herceptin that I will be infused with through November. It affects some women this way--others not. We are all unique, that is for sure.

Soteria--You are onto something with the zinc oxide. My son is doing pharmacy school and the pharmacist he works with also mentioned putting mylanta in aquaphor (my son recommended swishing mylanta and children's liquid benedryl for my chemo mouth sores and it helped!). Another recommendation for the skin is something called Calmoseptine, for after rads is over, though. It is fairly thick, has zinc oxide and menthol (for pain relief) and you don't have to remove it if you aren't doing rads. You may have to ask a pharmacist as some keep it behind the counter but it doesn't need a prescription. I guess it is hard to remove so you just leave it on through showers and such and it heals the skin and wears off on its own. I can't wait until tomorrow is over and I can put whatever I want on my skin! No more worry about "metals".



Hang in there, Heart. You are armed and ready to combat whatever your skin throws at you now. We will move beyond this!



I got a card today from a friend that says,"Wouldn't it be nice if life were like a DVD...and you could fast forward through crummy times! Hang in there!" Here's hoping we are all hanging in there just a little bit longer!



Gentle hugs to all,

Linda 29/30 Idesim and Carolyn!!! One more day of rads for the three of us!

I can't believe I am facing my last treatment tomorrow... for anybody just starting, it sounds like forever, but it goes by relatively quickly.  The worst week for me was the 5th, I had on and off fatigue and skin discomfort.  Since I've been on the boosts the discomfort has eased up considerably.  The really bad area under my armpit is now peeling and there is new soft skin underneath. 

I have been able to wear a bra throughout by wearing a cotton t shirt underneath, plus I could keep the Aquaphor or the radiation cream on 24/7 by doing this without ruining my bra or other clothing.  Needless to say the T-shirts will be chucked very soon

Soteria, I found the boots to be easier than the regular radiation as it was a smaller area that targeted the incision site.. so maybe the skin is tougher there? I have no trouble at all in that area, only the slightest pink.

Michele, laughing over the tossing in the air of the wig.  

Lin, your hair must grow fast!! I'm 4 months out and it is still so short... it's getting thicker, but way too short  IamNancy, I won't go wigless either.. but as far as the slipping, I haven't had a problem when I wear a nylon cap over my hair.

TMM60, hopefully the fatigue phase passes you by quickly... that to me was the worst SE of all.

Melody that is awful what you overheard.. how dare they.. you would think people would have compassion, not make nasty comments.. I wish you had just whipped your wig onto their table.

Heart, I am sorry you are having such issues, you seem to have had the worst time of this phase and I can only hope that you heal fast

Iamnancy, just read about your extended treatment.. I am sick for you, to find out you had an additional week must have been devastating *hugs*

I am so sad to hear about the pain and skin issues some of you have been dealing with, I can only hope that the healing is quick and this all becomes a bad memory.

{{{{gentle hugs}}}}

Thank you for the kind words ladies, it made me really uncomfortable and I couldn't wait to get out of there.  I think the reason I had problems with the boosts is because I had a shorter treatment so I got a more intense dose and since they removed my tumor at the edge of the aereola that area got hammered the last 4 treatments. I'm a week since my last treatment and still miserable, but this too shall pass and then I'm on the downhill.  I started taking the full dose of tamoxifen a week ago and seem to be doing ok with that. Congratulations to everybody finishing this week!