December 2009 Rads Group

Congrats to all that are done or soon to be!!!.......The person I want to see the least is my Rad Onc, I mean I barely saw her in those 30 days and can gladly iliminate her from my so-called "team", that's a joke!!!!!...I will see her next week and will demand copy of my treatment records and then no more...Just got my bill for the 9 days in Jan and they want a copay of about $180. per day plus a $35. office visit fee....What a joke!!!...Office visit!!!!!.

How is everyone, some of you have been very quiet lately??

 The best to all, sure hope you heal soon......

I have a question about the boost.  I start mine Mon., get mapped for it tomorrow.  I know that after Fri. a bunch of my burned areas will no longer be in the field -- Yeah!!! as I am fried to a crisp in some spots -- particularly under my arm.  I know the boost uses different rays -- and is of course more limited in area.  Do the rays of the boost continue w/the same effects on the skin or are they not as hard on it?  I'm curious about your experiences. I'm pretty raw around my nipple and that is near the incision they'll be boosting so I am worried about it. I'm going to try to concentrate on how much better my other burned places feel not getting the rays anymore!  Thanks. Karenanne

Well KMF....I cant answer about the nipple area.....I HAVE NONE....LOL....I had a double mastectomy on 5/21/2009 (my choice) 

My radiation regimen is 32 treatments....we have done 25 regular treatments and doing 7 boost. I have ONE more left. I will graduate tomorrow.....

With me he focused on the scar tissue on my left breast with the boost. Or should I say where the breast once was. He explained that if it was to return locally....then that is usually WHERE it shows up.....OF COURSE I PRAY TO NEVER EVER EVER EVER have that happen. I have not noticed anything different....JUST BURNT......

I do laugh at the ladies at radiation....They get a kick out of me.....They say (MAN MY NIPPLE IS SOOOOO SORE)

I say.....mmmmmmm mine dont hurt AT ALL......One lady says.....REALLY????? I said NOPE cause I aint got one....LOLOLOLOL......

Laughing is sure better than crying......

Radiation Onc. checked my skin on Monday and He said OK....lets focus on where the cancer was....I said OK.....look right here.....This is where it WAS....he was looking and I said....NOW EASY I KNOW I AM VERY VERY GIFTED WITH BOOBS NOW.....but BEFORE I WAS REALLY GIFTED.....HE AND HIS NURSE LAUGHED SO HARD......

Again NO BOOBS NO RECONSTRUCTION......you get the idea......

May GOD Bless Us All 

Oops, kmf, I missed your question. I have completed 4 boosts, and so far they seem about the same in degree of effect as the regular treatments. My nipple, which is in the boost field, was a little irritated before the boosts, and it's just very slightly more irritated now -- the difference is hardly noticeable. I'm not seeing any difference in the skin in the other areas in the boost field. I am so grateful that the areas that were bothering me the most are no longer getting treated (and are no longer painful), that I'm happy to have switched to boosts. Plus, it means that I'm nearly done with treatment

I believe that the degree of skin effects of the boosts (if they are electrons, as mine are) depend on the energy level of the electrons. My doctor said that lower levels didn't burn, but that higher levels, like 12 and 15, did. However, mine are 15, and they don't seem to be causing me any trouble, at least yet.

I hope you have as good an experience with boosts as I am having.

adrienne 

somanywomen, Adrienne and all you other WONDERFUL Ladies - I am doing the freaking HAPPY DANCE cause I am sooooo done with RADS!!!!!!!!!  I can't believe what an ordeal this has been.  39 treatments of torture.  Adrienne I lift my virtual glass of wine and toast with you to completion of my rads and one to you heidi as well and angelsabove here's a toast to you one day early.  My rad onc told me to continue to use the moisturizing cream they gave me and then in a couple of weeks I can start using aloe vera gel (I'm not sure what for by then I think all the burn will be healed).  He told me I could start using my deodorant again in 2 weeks from today.  I can start going to the tanning bed or out in the sun in about a month.  I just have to make sure I use suntan lotion or cover the breast up.  I will see him again on May 4th for a 3 month follow.  I'm really not sure what for... I guess so he can check the skin.  

I saw my new primary care doc today for the first time and for now I like her.  I've got to go in tomorrow morn or Monday and have bloodwork done (gotta be NPO for 8 hrs).  Then I see her again on Feb. 18th for a follow up on blood work.  I told her I had gained 30 lbs in last year.  That is why she is checking my labs, also because of all the edema i have in my legs today she got to see it 3+ pitting.  I get that sometimes and have for years (the joys of being a nurse and pounding concrete floors for years).  I have taken Lasix for years on an as need basis.  She doesn't know a lot about me so she wants labs.  I told her I was gonna go see a wt. doc and she said I'm the wt doc.  I asked her was she gonna give me diet pills and she told me she didn't really like them, and I told her that I had done the high protein low carb diet with no wt loss.  So I had to do something and that was also one reason that i was started on Synthroid.  

Sorry this got so long.  I'm just so happy that I can go on a diet and that rads is over!!!

Renee

OK.....ladies.....today I COMPLETED RADIATION......was given nice graduation gift....(t-shirt, doo rag, cards, and of course crunchy skin...) I did tell my radiation Oncologist who came out to congratulate me that THIS is the most EXPENSIVE school I have EVER attended......Should have earned a PHD......lol.....mmmmmmm....now gotta start with the NEW ME.....how do we do that?????? Been fighting the beast since APRIL2009.......uuuuuggggghhhhhhhhhhhhh God Help Us ALL!!!!!!!!

8 year old did ask me this morning .....If after today if i would be a (normal) mommy again....I said well I sure am gonna try......I think he just wants EVERYTHING back the way it was....boy dont we all....... 

I got the okay to start rads up again on Monday the 8th. Today I became the owner of a sheltie. He's about 1 1/2 years old and I'm thinking of renaming him Harley. He looks like a miniture Lassie.

Cangratulations everyone for completeing rads. I wish I was you and over this last part of the journey.

Congrats on everyone who is finished. Hip hip hooray!!!!!!!!

Veggy Im sorry this is going on so long for you. I will keep you in my prayers. Congrats on your new dog. I love Shelties! I had one as a kid and she was the sweetest dog ever.

Somanywomen, Im sorry you are getting bills like that! I keep worrying I will get some too but havent yet.

Well not much new here except we are in the midst of a Nor"easter! My husband works tomororw and I worry about him driving. They are calling for a foot or more here in PA!. Im getting over being sick all week. Ive been on antibiotics all week.

Take care everyone!

(hugs)

Jules

hhfheidi, have a blast on your snowy sleigh-ride -- I wish I could be there. Please show us photos? Congratulations on starting your new life.

Renee, you made it!!!! I'm sure there were times that you thought this day would never come, but you hung in there, and now you can put it behind you. Yay! I enjoyed the virtual sharing of the glass of wine.

I'm loving my mental picture of you enjoying your first weekday without rads.

Good luck with the insurance company. 

Veggy, I'm so glad that you have healed up enough to start rads again. What a long trip this has been for you. I know you're looking forward to moving on, and I can't imagine how frustrating the delay must have been for you and your husband. You'll be progressing quickly now, though.

Your new doggie sounds very cute. I know he'll be a nice addition to your home.

Angelsabove, what a send-off they gave you -- very cool. I'm sure you could have done without the crunchy skin, but the rest of the gifts were better Congratulations on finishing.

Your "expensive school" comment cracked me up -- hahaha.

Your 8-year-old sounds like a sweetie. His comment tells me just how worried he has been about you, and how much all this has affected his life. I'm glad that you and he will be able to establish a new "normal" now. I send you my best wishes as you enjoy your post-treatment life.

Jules, I'm glad to hear that you are getting better. You are due for some "well" time, for sure.

Me: Since the boosts aren't hitting that troublesome 1-inch strip above my breast, I am feeling wonderful. There is only a tiny amount of residual pain there, and there is only very minor discomfort in the area hit by the boosts. So far, I've had no skin breakdown or itching at all. The rads staff say that my skin is in wonderful shape. If it hadn't been for the burning sensations in that 1-inch strip, I'd be saying that rads is a piece of cake. However, each of us has her own rads reactions and problems. At least now, most of us are done with them.

I'm sitting here appreciating simple pleasures, the kind I never thought of until they were temporarily gone, like comfort, and the ability to sleep undisturbed. It is so good to have these pleasures again. Life is good.

To all: I hope you are feeling better every day. Congratulations on moving forward with your lives. 

adrienne

30 down, 3 boosts to go 

So great to hear about the end-of-rad Happy Dances!! Congratulations Renee and Angels. Adrienne, you must be almost done too. Glad you aren't having as much trouble as you feared.

Veggy: good luck with your rads.

I'm two weeks past radiation and I'm amazed how fast I have healed! Hooray. The swelling is almost gone as well. Occasionally I get a new kind of shooting pain, but it's only about once a day, if that. All in all, not too bad!

I'm giving myself a couple of weeks before I start Tamoxifen. I need a break!! After I come back from my Key West vacation, then I'll start...

Have you others started your medications?

Bonnie

Good morning, folks. I hope you are all feeling great this fine weekend.

Renee, I am delighted that you are healing up fast. You've had a rough road, and it's about time that you got to smooth pavement. Thank goodness you'll finally be able to get that seroma drained. I hear you about wanting you and your DH to be able to touch it without pain.

I apologize: I didn't mean to say that I thought rads was a piece of cake: I meant that IF it hadn't been for the burning in the one area, I would have thought that. Because the burning started after treatment #8, I spent a lot of time in pain, and in fear that things would get progressively worse, my skin would blacken and fall off, etc. I do feel VERY lucky that my skin is holding up. If I had known from the start that my skin would be okay, I wouldn't have had all those exciting mood swings

I agree with you about small breasts maybe being an advantage for rads. I was able to go braless the entire time, so there was no rubbing to damage the tender skin. I intended to wear a camisole, but I found that it trapped heat inside, and that made the burning worse, so I couldn't do it. Because my breasts are small, there wasn't a lot of skin-on-skin rubbing that could have caused problems. As you say, I was very lucky.

Regarding meds, if I remember correctly, Tamoxifen is my only choice, since it's the only drug proven to work on DCIS. I was relieved when I heard that, because like you, I'm worried about bone loss. However, I wonder if there's a way to prevent bone loss with the other drugs?

BonnieSF, how marvelous that you are feeling so good now. Yay!

I'll be finishing rads Wednesday (oh happy day), and I have my appointment with the medical oncologist to discuss Tamoxifen on the 26th. I'm glad you're taking a break before starting -- you deserve some treatment-free time. Have a wonderful time in Key West.

Me: I continue to be amazed at the seemingly random nature of my reactions to rads. Friday night was super, and I got a great night's sleep. Saturday morning the pinkness was nearly gone, even in the boost area. Even the sentinel node incision area wasn't bothering me, for the first time since my surgery. I felt marvelous, and started thinking that maybe the non-boost area was done acting up... but then yesterday afternoon everything started getting hot and red again. Last night wasn't as good as Friday night. However, it was still very, very good, and I'm not complaining: I'm just surprised at the changes.

I'm having some areas near my areola where the skin is turning black and falling off, but they're tiny, and not causing me any trouble.  

Wednesday will be my last day of rads, and I am ready for that  

adrienne

30 down, 3 boosts to go. 

Yay, Veggy!!! You are on your way at last. Start marking those days off on your calendar, and soon you'll be done.

adrienne

31 down, 2 boosts to go 

Adrienne - Woo Hoo only 2 more to go... I know you can't wait!  Then you get to start the wonderful Tamoxifen. (yuck!)  An NO I did not ever think that you were in any way implying that radiation was a piece of cake.  By no means is it that to any woman.  I do think that there are those women that have a much easier time of it than others.  I also know that you had a rough go of it there for several weeks.  Burning pain is NO fun especially when you are trying to sleep at night.  I know all to well as do many other ladies here on this board.  But soon this will be a distant memory for all of us. And yes Veggy that includes you to!  LOL! 

As for me I was doing really well after my last boost when all of a sudden on Saturday I started getting this large, angry red area that is probably about a 2nd degree burn that extends from around my areola and nipple to the top right outer quadrant of my breast but surprisingly this isn't as painful as the seroma pain I'm having.  If I could change my appt and get into see the surgeon tomorrow to get that darn thing drained I would.  It is causing me misery.  I'm even having some pain in the SNB area now that all the swelling has gone down under my armpit from the radiation.  If it's not one thing I swear it's 10 other.  Somedays I can't win for losing I think.  Also, I had hired a new nurse to work weekends and she was training... she quit on Sunday morning.  Didn't even work one day by herself.  Now my self and another nurse have to work this coming weekend because my every other weekend nurse is being a horses backside and won't work.  I'm physically not up to working 7 days straight over 8 hrs a day yet but I haven't got a choice.  The other nurse that is going to work and split the shifts with me isn't physically able either she has bone spurs on her neck and has had several episodes of losing leg movement and her legs collapsing out from underneath her.  We make a really good pair, huh?  LOL!! Wish me luck.  I'm so tired today I want to collapse.  It was the first day that I stayed the extra 2 1/2 hrs back at work.  It was too much!!! I can't do it tomorrow.

Renee

Renee, I'm so sorry that your side-effects are increasing. Ouch, ouch, ouch. Geez, haven't you had enough by now? I am sending you a virtual hug, and a shoulder to cry on, if you need it.

What a pain that you're having to work extra hours now, too. That pretty much sucks. If I could send extra strength to you, I'd surely do it.

Jules, I'm glad you are feeling good, and I hope you get to use that hot tub soon. That sounds soooooooo good. Thank you for the hugs, too.

Veggy, I hope the treatments are going well for you. Like you, I marked off the days one by one, writing how many were left to go, too. It was sometimes the high point of my day -- I guess that shows how sad my life is sometimes Now I have to go cross off #32...

adrienne

32 down, 1 boost to go 

Hi All,,,,I'm still checking on you guys....Hang in there, the healing will soon begin....I've been on arimidex 3 weeks today (time goes fast) so far so good, haven't noticed any se's, but I'm not sure if it takes a while before you get full effect....Hubby and I are going to Hard Rock in Tampa for our 10 year anniversary next week...Wish me luck $$$$, you would not believe what my rad bills are, I am still questioning them and they are suppose to call me soon....I am having CT scan in the morn and they called me to ask for the 20% up front another almost $500...It never ends, but if this keeps up my yearly deductible will be paid soon....My boob is still sore and feels bumpy, my scars are still hard and tender, my imagination sometimes gets the best of me, but trying to trust that the treatment I chose was good and go forward with it.......

Well wishes for everyone.....Jewly