July 2010 Rads

Julie50

Happy Friday the 13th...For me its a good day I was born on Friday the 13th...:)

I've been having hot flashes and night sweats for over 4 months.  Here is what I do and it does work.

I have ice packs I take to bed with me, when they hit I apply them to my wrists and neck, I also get up and PEE, yes PEE, your pee holds heat in your body.  Within minutes I"m ok. (However I do get over 8 a night) so I don't sleep much.  Also when I feel them coming on during the day I try and relax and think of something else (ok hard to do when your body is buring up and I want to whip my clothes off)...LOL

Starting Monday I have 4 more weeks of Rad, 4 regular and 1 week of boosts...Can't wait until its over and done with.  Like many of you I start the pill from "hell" as I call it, still debating if I will or will not, still researching it.  I have so many other things going on in my life, I need my life back for a few months before I start to feel like crap again.  However, my girlfriend was on it for 5 years, did fine except for gaining over 20 pounds...:(

Ok, time to rock and roll and get ready to go to the spa (rad).

Have a wonderful weekend girls and enjoy the two days off we have.

Julie

bailey1958

Good Morning,

Well I have officially hit the wall. I am soooooo tired - was in bed for 13 hours last night something I haven't done since I was a teenager (a long time ago). My skin is covered in heat rash - the good news is one more today and three more next week and I am done this part of the journey. Once again I want to say to those of you who have done chemo before radiation - you must be the most courageous and strong women because I just can't imagine what that must be like. I consider myself a very strong person - but I tell you this is kicking the crap out of me this week. I was told yesterday that the effects from radiation peak a week after finishing (oh joy, oh bliss). I considered telling them today that I want to quit. What difference does it make if I do three less - but I know I have to finish given I have come this far. I also have had a headache for a couple of days - I wonder if it is just the heat or if any of you are getting headaches?

Thanks for the suggestions Julie about hot flashes. I personally live with a fan attached to the end of my bed. It slays me how your skin can feel cold and the inside of you is on fire. Hormones - too much cause cancer and yet to little of them to regulate my body - it just doesn't make sense to me.

Have a good day everyone. Thinking of you all - helps me keep going.

Sonia 

spendygirl

Hi ladies!  Thank goodness we have two days off.  Completed #22 today,11 to go.  I think I'm having every side effect possible, but I wanted to ask if anyone is having stabbing, sharp, electrical-like pains?  They're short lived, but I had them in a different place and all night last night.  Much worse than any of the others.  On the other hand, I don't seem to be having any SE from Tamoxifen.  Can that be possible?  I started it on July 1st.  I too am almost afraid to be done.  At least while doing rads, I feel like I'm doing something to fight, when that's done, what will we be doing?  All part of the emotions of breast cancer, I'm sure.

Hope everyone gets to relax and rest this weekend.  Take care!

MagPag

Hi!  Happy weekend!

Spendygirl, I totally relate to what you're feeling.  I finished last week and for the most part feel like I'm not productively doing anything.  Have to wait a few weeks to see the onc and get the 'pill from hell' as Julie calls it.  Trying to concentrate on simply taking care of myself and working on rest and healing my skin... a full time job.  Yes, I get the sharp pains, the docs said that was Normal...their favorite thing to say.  I think it has to do with nerve endings.

Sonia, Hope your fatigue gets better with some rest this weekend. I got that same news about the carryover SEs, and hate to say that it was true for me.  In the past week, my armpit totally peeled.  Got some antibiotic cream today, hopefully that will help it along.  Anyone else get the netting thing that they cut into a spots bra?  Very strange, but it holds in all the padding that holds in all the creams and gel pads.

Definitely ask for the gel pads, they're cool and soothing. I think they're called vigilon.

Hang in there everyone, stick with it and soon this all will be behind us.  Thank you all for sharing your thoughts and encouragement here, it's really great to read it all.  Looking forward to someday chatting about movies or current events instead of BC

Take care.  Donna.

marita15

Hi ladies!

This site has really been amazing, and life saving....I am honored to be part of it, and humbled by the bravery and intelligence all of you display!

I have one more booster to go on Monday, and I cannot wait.......think it is psychological, but I already feel better.  I slather emu oil and aquaphor on religiously.

But I know many of you will be starting tamoxifen, and so I wanted to share.......I was on the T thread and one gal said she split her pill and took half in the am and half in the pm.

Well, I am here to tell you, that I did the same thing, and the results were unbelievable!!!!  I was so sick with all of those SE's everyone described, and just felt like I had lost myself, could not care less about anything, wore sweat pants daily, barely swiped on mascara (and I consider myself a rather hip, modern, 48 year old!).  I still have aches and am tired, but the fog seems to have lifted almost completely AND no nauseousness.  So I hope this helps somone else out there.  I like actually having to split the pill with a knife, I think it feels like I am taking less, plus I live in a foreign country, and my onc doesn't speak or understand very good English, so I would rather just split the silly pill myself, rather then explain I want two 10 mg. tabs.

Bravo to all you warriors out there!

bailey1958

Hi Everyone,

TGIF - two days off. The techs gave me a recipe for the angry rash on my chest today - Boil 1 litre of water add one and one half tablespoons of salt to the boiled water stir till it is dissolved and cool to room temperature. Pour over a clean washcloth and place cloth on the irritated skin a few times a day - make a new batch each day. It has been quite soothing for the itchiness - though the salt is a bit stingy initially. 

Thanks for the suggestion on how to take tamoxifen Marita. I will definitely give that a try when I start taking the pill - I'm thinking I will start next week after I finish radiation. It must be really tough to be going through this in a foreign country - I hope you have all the supports you need there. 

I'm with you Donna - (glad to hear you are done with tx and recovering) couldn't agree more - would love to be chatting about anything other than treatment issues. It seems like this is all I talk about. I feel like a Debbie Downer with my friends and family.  Thanks for the positive words - I am glad to have nowhere to go tomorrow and am going to watch season two of True Blood this weekend as my diversion.

Spendy - glad to hear someone say they aren't having side effects from tamoxifen. My mom took tamoxifen for 5 years and never complained about any side effects. I holding out for no side effects too!! Thanks for giving me hope.  

 Good-night ladies,

Sonia 

spendygirl

You all are such a blessing.

changes

Hi everyone,

I hope everyone is enjoying a radiation-free weekend. I had treatment # 24, and I'm suffering a bit. At least the end is near.

Spendygirl - I am having the sharp, stabbing pains, too. My breast feels as bad now as it did right after surgery - like someone took a baseball bat to me. My underarm feels twisted and tight, just like post-surgery.

Marita - I found your post very comforting. I have been completely wiped out, can't think clearly, and have lost my appetite. My radiation oncologist keeps insisting that it is not related to either radiation or Tamoxifen, but I'm pretty sure it is. I can sleep 12 to 14 hours straight - not even getting up to go to the bathroom. I HAD always been an insomniac, but now I can sleep anywhere, anytime. I actually started to fall asleep on the radiation table last week! I may try your suggestion about the Tamoxifen. I had been taking it before bedtime, but it's certainly worth a try. I don't know if I can tolerate 5 years of feeling foggy!

Have a nice weekend, everyone!

Karen

pagowens

Hi All,

I have one more boost on Monday and then I am done.  WAHOO!  The last three days, I've felt sheer exhaustion.  I went to bed on Thrusday at 7 pm, was late to radiation on Friday (they were worried about me - so they said) and feel like I'm just draggin my bones around.  I guess this is the cumulative effect of 32 radiation sessions.  I'm too tired to jump around for joy and think I'll just be relieved on Monday.

For my last chemo I did bring an Incredible Edible fruit display to the nurses.  I figure I'll go out tomorrow and find something for the techs for Monday.  It's a much smaller group, so I'm figuring some tasty stuff and sugary with a card to say thanks for keeping me going.  It's my last session with the doc as welll, so I'll have to ask him re follow ups - I don't know what to expect.  What are you guys doing at the connclusion -- any good ideas?

As for my body, my shoulder and back are peeling and a bit itchy.  Just dried out skin.  My boost area is dark reddish brown - not burned but sorta looking like a big bruise.  My right side (radiated) is very different looking than my left side - it looks like two different people.  I have no idea how long that look will last, but I'm betting a good year for my skin to look normal again on my radiated side.

I received my Femara pills (90 through the mail in prescription) on Thursday.  They are very small for pills that pack a big punch and I think I have to take these pretty much forever...not just the 5 years like Tamoxifen.  Because I am post-menapausal (57 years old - started menapause at 50), the aromatase inhibitors are supposed to work better....but they are likely to bring on bad arthritis.  So, I am also figuring that I have to start doing some strength exercises after Labor Day. 

I totally understand the statement that "I feel old" because I swear my body has aged 10 years after going through chemo and radiation.  I know that I look older and my body feels beat up.  I'm hoping with time that I'll regain my old vitality.

Hugs to all of you!

Pat

rocknesmom

Happy Day-off Everyone!

I'm just catching up on the posts from Friday. YIKES! We are a sorry bunch, but thank God we have each other!

I spoke too soon about my throat being better. After a few good days, I am back on liquids today, plus I have no voice! Only 2 more full treatments, then 3 boosts, then DONE ON FRIDAY!!!

I am nervous about the whole tamoxifen treatment as well. I feel that we have been through so much; why can't it just be OVER? But, I also know that I will do whatever it takes to keep this away for good!

Sonia, I am so proud of you for standing up for yourself! Great job!

Here's hoping for a good week of less itchies, fewer blisters, more energy, and positive thoughts!

Love and hugs to you all!

Linda 

eileenr56

Waltersren1,  I agree.  It has taken my whole summer as well.  I was thinking about that the other day.  Biopsy, surgery, another surgery, and now rads.  I have 4 more boosts.  I'm looking forward to wearing different cloths. Of course I'm glad it happened in summer, because I go topless a lot around the house and I couldn't do that in winter.   I have summer cloths I can't wear without a bra, and I don't want to mess up others.  I figure by september the skin will hopefully be closer to normal.  Here's hoping.

livia2

Hi Ladies,

I've been reading the posts for this group just today and just wanted to jump in with my comments.  I really appreciate all of the sharing. I started rads on Jul 15 and have 3 more full sessions then 2 weeks of boosts.  I was diagnosed in Oct. 2009 (on my mom's b-day of all days).  She passed away 12 yrs ago from lung cancer (she smoked).  When I got the call from my doc that I had cancer I could hear her voice telling me, "roll with the punches."  She was a strong lady.  This has been a whirlwind of a year for me as I"m sure it has been for everyone.  I had a lumpectomy in Dec for IDC, stage 2, - ER/PR+, HER2-, with 3/12 node involvement.  So I had surgery, followed by 4 months of chemo (an absolutely awful experience) and radiation now.  I was also told I would be prescribed Tamoxifen for 5 years.  I just want to say that I think anything after chemo should probably be a piece of cake.  Rads haven't been that bad in comparison.  My right breast and under arm are really dark now.  Under my arm is literally black and stings from time to time.  I use Aquaphor and the Aloe Vera gel.  It's really been tender for the past week or so but not unbearable.  I found really lightweight comfortable bras called "Barely There".  They give just a little support but dont feel binding at all.

I am surrounded by family, friends and co-workers.  Everyone who knows me knows what I'm dealing with and they've all been wonderful and supportive from the very beginning.  I work full time and have kept working through most of it except on the days when the chemo treatments forced me to rest at home.  It's been a tough year but I'm glad most of that part is now behind me.

 I wish each of you many days of joy and peace and pray that you will be surrounded by love and friendship.  I've heard so many say, "live each day".  I try to do that and I definitely put things on my calendar to do with family and friends so that I something to look forward to other than doctor appointments.  

 livia2 

marilyn7

Sunday night - boo hoo!  We start back up tomorrow morning, but I'll be more than half way done after tomorrow (18/35) - woo hoo!  

I'm still dealing with neuropathy in my hands and edema in my feet, but my hair is starting to come grow and the skin on my breast is still hanging in there.  So I'm trying to focus on the silver linings.

The next 2 weeks at work will be pretty relaxed, but once September hits, my work life gets hectic again.  So I just need to hang in there!  I can't help but feel a little guilty. My staff have been working very hard and I simply haven't been pulling my weight since this whole thing started.  But the end is in sight.  My last treatment is schedule for Sept. 9th - if I can make it through without modification.  I've just got to get through 18 more ZAPs - oh and the start of the school year with my daughter, and hosting candidate forums and local elections, and a finance meeting, and a Board meeting, and the start of cross country season, etc. etc. etc.  Being a mom and working full time is tough enough - through in daily rads - no wonder we are exhausted.  Speaking of which - I'm off to bed!!!

Oh - for those with insomnia - I used Ativan throughout my chemo and it worked like a charm.  (I know I probably already said that, but my memory is shot - sorry).

Marilyn 

bailey1958

Hi All,

I've been feeling the ghost of worry this weekend creeping up behind me. I've been trying to think about moving forward from here (wednesday when I finish rads) and letting go of what might happen in the future. 

Marilyn, your post reminded me that I too will soon be back at work with all of those "keep busy things" on my schedule. Maybe that will be the exact diversion I need to keep that hungry worry ghost at bay. I am certain your staff are more than happy to pick up the slack - though my sense is you probably do way too much anyway.

Livia it sounds like you have a wonderful support team and that your journey has been a very tough one - I've said before I just can't imagine doing chemo and radiation.  This has been a really long few months for me and it seems many months for some of you. I haven't had the same situation as many of you managing families, a job and treatments - being off of work for the summer I have had a lot of empty hours to fill and many of the people who love me seem to have gone back to their own lives (as they should) but I am a little lonely and a lot afraid for the future. It helps to read many of your positive posts to remind me that it is possible to get on with things.

Thanks for the cheer Linda - I saw the Dr. I terrorized on Friday - I think when he saw me he had to work really hard to not run in the other direction ( I think I scare him ) 

Thanks to all of you who are here in the trenches with me. There is comfort in having companions in the "same boat". I am grateful tonight to have three treatments left. My skin is certainly ready to be done.

 Sonia

Chicago1018

Sonia - I keep picturing this doctor cowering in the corner when he sees you.   I guess hell hath no fury like a patient scorned! 

changes

Hi all,

I am down to 9 treatments (4 regular, 5 boosts). Is anyone else having more discomfort from the tissue underneath than from the skin? My skin is burned, but that is tolerable. However, I am in a lot of pain from the tissue underneath. Everything hurts and I can barely use my arm again. It actually feels worse than it did after the surgery. Is this normal?

Karen

changes

Hello again,

Just returned from my rads appointment. My oncologist was off at a conference, so there was someone filling in. I told the nurse about my symptoms (which have been getting steadily worse over the past two weeks, and which my rad. oncologist told me could not be caused by radiation). Well, the fill-in doctor said they ARE being caused by radiation and put me on steroids and an antiobiotic. I'm glad he did something, but I'm frustrated that my regular oncologist has been so dismissive. Ironically, my medical oncologist has told me that "you know your body better than we do" and assured me that he would take seriously any complaints I have, but the radiation oncologist acts like I'm imagining everything. I'm aggravated that I've had to suffer through two weeks of unnecessary discomfort.

On the bright side, 3 more full treatments and then on to the boosts!

Karen

teemee

I've been lurking here and just had to chime in Karen. I feel like the entire radiology office staff where I go is very invested in me being happy, shiny, great, super (eesh). Which is hard when I see them every day--I'm up & down like everyone else. I never felt this huge push of 'you're OK, nothing is wrong" at the regular oncologist. It's odd.

My score: 25 down, 7 to go!

changes

Hi Teemee,

 Thanks for your input. After the rads techs get me set up, when they go to leave the room, the one always says, "Here we go!" in a cheery voice, like it's an amusement park ride about to start! They are all very nice -maybe it just makes them uncomfortable to have to do something unpleasant to someone for 33 days straight The nurse kept telling me today, "Most people sail through this without a problem", which made me think, oh great, I'm being a difficult patient.

Congratulations on having 25 down! I will finish one day after you.

Karen

MagPag

Hi everyone,  Glad you got something to help, Karen.  Are the antibiotics for your skin?

Maybe it's a right brain/left brain thing with the rad oncs.  Hope they're better at the math & technology to get the zaps right than their interpersonal skills.  Getting ready to send a note to my center to thank the techs for always putting on the smiles and jokes to make the unpleasant tolerable.  Also to let the docs know that they should re-frame their statements to be more positive and encouraging instead of saying "it's really not that bad" as they stare our raw boobs. I totally get that they have seen worse, and I have to be thankful I'm not one of them, but really it's insulting to infer that we should stop complaining and just walk it off.

ok I'm done ranting   Good luck with your rads this week ladies and congrats to those who are almost finished!   Donna.

Julie50

Hi all:

Congrats to all that are done and almost done...Soon it will be behind you.

I have 4 more weeks to go.  I feel awful today, told them this and as always "ITS NORMAL" my boob feel likes is 25 pounds, my underarm hurts and I'm so tired and feel sick to my stomach.  Plus I started to get the heart pulps again (had them often on my HRT) so I will see my heart Dr. at the end of the month.

I think the wose it the hot flashes, they just keep on coming all day and all night, they have to give me something I can't live like this much longer.  

Ok that is my complaints for today ladies.  LOL

I hope everyone has a good week in Rad.  Hang tight soon we will all be done with this.

Nite

Julie

Houndmommy

Hi Everyone!

Twenty-one down and only 7 to go!!!!  My skin is holding up well.  I think one thing that has helped me is the fact that I haven't worn a bra since starting.  I am smaller breasted so my other boob is comfortable going braless and I am a SAHM.  While I try to dress nice when I am out and about, I don't have to be all dressed up and worry about clients and coworkers.  I do occassionaly get stares because with most things I wear, it can be obvious that I only have one boob.  Anyway, today someone gave me some hand-me-down camis with prosthesis pockets and when I tried them on - OUCH!  My skin is very sensitive right now.  I didn't realize just how sore I am until I tried putting something tight on (ie. the band on the shelf bra of the cami).   So, my hat is off to you ladies having to wear bras ,etc. for work and support.  That is no doubt adding to your discomfort.

I'm starting to feel more tired but still no exhaustion like some of you are experiencing.  I think the worst for me is this stupid brain fog - it is driving me crazy!  It is probably worse because I am more tired.  I just feel totally out of it.

Karenlen - most of my discomfort is under the skin like you are experiencing.  I feel sore like I did after surgery.  I was told this is normal (no surprise there, lol!) and due to the swelling and inflammation caused by the rads.  I am so glad yo got some things to help you.  It is soooo frustrating to be ignored by our doctors!

Linda - Sory to hear your throat is a problem again.

Spendygirl - I had those sharp pains early in treatment but they have disappeared over the last couple of weeks.  Hopefully yours will too.

Marita15 - Thanks for the Tamoxifen tip!  I will ask my onc about that when I get my rx next week. 

Sonia - my rad onc told me that I should expect the SE's to continue to get worse for 1-2 weeks after my last tx and then it will be another  3-4 weeks of healing.  Jeez, that puts me at the end of Sept before I recover from this radiation experience!  And by then I will be taking the "pill from hell" so I may never get to feel better!  On a lighter note, I had to chuckle thinking of the doctor running the opposite direction when he saw you!

Julie - I am so sorry you are having such sleep issues and so many hot flashes.  I've read several places on BCO that some people have quite a bit of success reducing their hot flashes with accupuncture.  Maybe you should check into that.

Have a good evening ladies! 

Hugs, KIm

changes

Kim - I think my breast could EXPLODE in the middle of treatment, and they would try to tell me "that's normal". LOL!

Houndmommy

Karen - Oh my gosh!  Your post made me laugh sooooo hard! 

bailey1958

I have been quite busy today with guests and was really looking forward to getting here to see how you are all doing once they left. I laughed so hard at your post Karen - I can imagine your/my technicians all saying in unison - "you must have had a congenital defect in that breast of yours Karen because it sure couldn't be the radiation that caused that explosion of your breast". 

Saw my surgeon for my follow-up today - she assured me I am doing really well 3X's - when I asked her to tell me what it was about me she saw that indicated to her I was doing well - especially as she was looking at my red, encrusted surgical scar with a stitch abscess on either end of it, surrounded by oozing skin sores when she said it - she kind of just stared at me and repeated - you're doing really well! I have accepted that I must need too much reassurance and am clearly a handful for my doctors.   

Two left! UUUUGGGGGG!    

livia2

Hi again everyone,

Congratulations to those of you who are finishing up.  I too am so over having these hot flashes all of the time.  I used to laugh at my mom when I was a girl because she would have us open the front door in the middle of the winter so she could "cool off".  Little did I know what she was going through, although I hear that hot flashes induced by the chemo are far more furious.  The slightest little heat around me set the sweat glands in motion.  I've actually started getting hot flashes during my rad treatments.  I read somewhere that they can be brought on just by thinking about it, much like a woman who is breastfeeding will start the "let down" process when she thinks of her baby.  It seems to be true.  It's funny, that i'm having one right now.  I wish it worked the opposite way that I could think cool thoughts and cool down right away. 

Be brave as you continue your treatment.  Take good care of yourself and look forward to tomorrow.  There are many scriptures that I find encouraging and wanted to share one of them with you.  It says,  "I would have fainted, unless I believed that I would see the goodness of the Lord, while in the land of the living."  Believe that you'll see goodness in your life.  Look for the blessings that come with each day.  Focus on the positive things and surround yourself with people and things that bring you joy.  

 I hope everyone has a good night. 

pagowens

Hi All,

I'm done.  Had my #33 of 33 this morning.  All I can say is "relief" that this part of my journey is completed.  I was so glad to get done that I left my keys in the changing room ... so, of course, I had to go back after leaving and not being able to drive off.  I go back for a skin checkup in 2 weeks.  I could have gone to see the doctor today but I wasn't required to, unless I felt I needed to.  So, I didn't.  Brought in a plate of home made brownies and a thank you card to the staff. 

I didn't experience the "you're doing fine" all the time.  Instead, they were a very empathetic and kind group.  This morning, for example, the tech said to me, "Geez, you look tired.  I know this is a grueling experience, I'm so glad you're done and can rest up and heal now."  My doc would also look at my skin and ask me how I was doing - "any pain?  any itch?  Looks like you're getting through this" ... and towards the end...."Looks like your skin is pretty red - how's it feel? Any questions?"  Everyone today, even the receptionist, congratulated me for "making it through and getting done."  So, I think I was pretty lucky with my radiation/oncology team.  I also had a very kind and thoughtful oncology group.  You certainly need that type of team in this fight!

Thank you all for being supportive - I can't imagine going through this alone...without others to share and vent. 

In a week I start taking Femara.  I'm ready to get on with my life and not have the cancer rule every day's work.  I'm sorry that breast cancer has taken away my sense of future, but I'll cope with that and look forward to waking up in the morning and not thinking about this stuff first. I wish each and every one of you a healthy recovery and long life!

Hugs,

Pat

Julie50

Pat:  A HUGH CONGRATS.  You are finally done and over with this part of your life.  Time to enjoy..

I like my Rad Dr. also I see him each monday, very kind.  Said all I am feeling is very normal.  He did suggest Accupture so I am going on Thursday.  

I wish you the best of luck in your future....

Hugs Julie

changes

Hi everyone!

Pat- CONGRATULATIONS on being finished with radiation! I know what you mean when you talked about reast cancer taking away your sense of the future. I hope that we can all find a way to recover psychologically as well as physically from the toll this has taken. Blessings on you as you head into the "recovery" phase of treatment!

Livia2 - I actually read something in the past week about visualizing cool things actually CAN help hotflashes. Think it might have been in the newspaper, but could not swear to it (because I can't remember squat these days).

Bailey- Only 2 to go - you've nearly made it! I think maybe our doctors start to suffer from compassion fatigue - it can't be easy to work in oncology, where even the "healthiest" patient is fighting for their life. It would be nice if they were better at offering us reassurance and just listening to us, rather than making us feel like we're difficult for asking questions.

I am feeling MUCH better after only one day of steroids. The swelling and redness have already noticeably reduced (and so the pain is less, too). I'm annoyed that they let me suffer needlessly for two weeks, though. Still, I'm glad medication is helping.

Karen

Julie50

Karen glad you are feeling better, making you suffer for two weeks....I sometimes just don't understand it...:( 

I did try thinking of a cool Ocean last night at 1:00am when my HF hit, did not work but a nice COLD shower sure did...LOL  But I will keep on trying when they hit to think of the cold winters we have here in Chicago...:)

does anyone have the heart pelpulations (bad spelling)????

 I hope everyone has a good afternoon!!!

J