Winter 2013-2014 Rads

CruiserMay

Ellen, I had my sim on 12/30 (mon) and then went back on that fri (1/3) for them to check measurements and give me my tattoos. They had originally told me on the Monday that I'd get my times then, but it moved to Friday...and I got something over the lunch hour, as requested. I will work thru treatments as I did with chemo...and because the commute is a pain I will just plan to work remotely for the duration. I'm very fortunate to have an understanding supervisor.

Good luck to everyone and here's hoping minimal SEs for all!

lesliecusana

Well 1/20 rads done! More relieved knowing how it all flows! So happy I was able to get a 4pm time so I can go after work. Now hoping for no S/E. Given a tube of recovery cream to use twice a day! Hope all goes well for the rest of you!

Anonymous

lesliecusana, the fear of the unknown is the worst. I felt that way with chemo - much better than I had envisioned. Glad you got the time you wanted.

CruiserMay, I admire all the ladies that can work through chemo and rads. So nice that your job is flexible.

rosecal, 18/30 - good for you! You're over half way to the finish line.

I know many of you have horrible commutes in awful weather. Please be safe on the roads and watch out for the crazy drivers.

candi07

These treatments affect  us on soapy different ways. Of the best advice I was given was not look for things to happen. Before I started chemo I went out and bought all this stuff, my night stand was my chemo drawer. Well I was blessed that I didn't even use half the stuff and ended up returning it he stuff to the store. Do be encouraged!  Today was 11/33 rads for me seems to be going by so fast. I can't wait to be a rad grad. 

lesliecusana

So 2/20 down. Should I be concerned that the RT was worried I had already had some pink skin with slight swelling after 1st treatment? She said if it was pink still tomorrow she would have me see Rads nurse. Hum? I thought pink is normal with rads!

Leslie

MrsDarcy

Hi Leslie.  I was pink and swollen after first session.  Saw my RO a few days later and all was ok .  

Hydavis42

Hello ladies I did my first radiation treatment today which is on the left. My RO said 5 to 6 weeks so im guessing 33 to 36 treatments total. He never gave me an exact number so I will ask tomorrow. I was very anxious about this first day that I almost wanted to reschedule. I am glad I didn't. The most awful time I had was holding my arms over my head which was about 30 minutes maybe a little more because my surgical arm hadn't been held up like that in one position since before my surgery in August 2013. The tech said she had to take more pictures (why?) I thought they did all that at the simulation Monday. She promised me it would be much quicker from now on and I sure hope so. Otherwise it was ok. I hope everyone else had a good start to radiation this week and all others that have been at it for a while are doing well. Has anyone else started tamoxifen while on radiation? My MO and RO agreed that it is ok for me to start that today as well (Ugh) completed chemo December 19 starting radiation and tamoxifen today Whew lets see how that goes. Right now I don't know if I should be feeling like a guinea pig or my doctors are just brilliant. lol.

Cari3047

Completed 14/18 today, only 4 to go.  Saw RO today too.  I am very dark red and swollen and bumpy, but she said it is what she would expect with the high dose rads I'm getting.  Still no broken skin and am holding out hope that I can make it through without any. Using Aquaphor 3xs day.

I did ask her if she recommended a certain brand or type of sunscreen, but she doesn't.  Has anyone gotten a sunscreen recommendation from their doctor?

Welcome to all the posters who started this week!  There is light at the end of the tunnel!

LanaM

Had 15/33 today. I got a rash yesterday on my upper chest and the itching is driving me batty! They just told me to use hydrocortisone cream. It might be helping a little, but not much. Anyone else have bad itching? 

Welcome to those just getting started! 

batcatlady19

Cari3047 - no dr-recommended sunscreens (mine just said 'use one'), but I used to write for an environmental website & would always recommend the EWG's annual list of safest sunscreens - http://www.ewg.org/2013sunscreen

DawnCT

Hydavis - Congrats on beginning your rads. It will be over before you know it.  I was really mentally uncomfortable the first few days but it has gotten easier. They took pictures on my first day of rads also.  They are just making sure that the radiation is being delivered to the exact right place. They have also taken pictures about once a week since I started treatment. It doesn't take long - just an extra couple of minutes. I had #16/25 today.  I am starting Tamoxifen after rads are over.  I refuse to start until I have healed from the rads - I just want to be able to differentiate side effects! I hope it all goes well for you.

Leslie - I was pink within a very short time but it has not gotten a lot worse.  Do you have fair skin?  The techs keep telling me I'm red but the doc says that "my skin is responding exactly as expected".  So try not to worry too much.  

Lana - I am getting a little rashy on chest but it only itches slightly.  Have you tried Benadryl?  Maybe Aloe gel would help - I think I read about that on one of the threads here on BC.org.  I am starting to have some mild shooting pain like you mentioned - are you still having them?

Cari - Wow!  You are almost done!  It sounds like you have done well.

Candi - That is good advice not to look for things that might not happen!  I am a worrier.  

A question - Did anyone's RO mention that future mammograms would be painful in the radiated breast?  That's what my RO told me.  Ugh!  

Dawn

lesliecusana

DawnCT

No I'm olive skin! I don't know what's going on! I do feel I am more sensitive lately!

lesliecusana

Junipergirl

Thanks for your input! We all are different!

Makes me feel better! Sure it's ok!

SallyS70

Hydavis42, I started my hormonal, anastrozole, before starting rads.  I did not have chemo.

MinusTwo

RoseCal:  Not to scare you, but the numbness & cold & tingling sounds like a touch of peripheral neuropathy.  Docs don't like to talk about either lymphadema or neuropathy.  I've finally seen a neurologist because of worsening CIPN (chemical induced peripheral neuropathy) mostly from the Taxotere I think.  Of course that (usually) goes away for 70% of people up to 2 years after chemo is over.  I appear to be in headed towards the other 30%.  She said that rad's don't usually cause or aggravate peripheral neuropathy, but it is listed as a rare SE on several sites.  It's a plus that you didn't have chemo but worth putting on your list of questions - especially if you're diabetic.  One rare SE from Rads can be other neuropathies, like in the brachial nerves, but it's supposedly very rare.  Good luck w/the tests.

rosecal954

MinueTwo: Thanks for your reply. I researched too and thought it might be some neuropathy, but it seems so early for that.   It's not as bad now, comes and goes.A spot on my hands felt "hot" when doing dishes yesterday too. When I had my blood drawn yesterday, the tech asked if I was on blood thinners; I never have been -- it looked thin and watery in her estimation.  Having those 5 vials taken, made me a little more tired. I'm not diabetic. Thanks so much for your input and hope I can get some answers.  Have a good day.

Moving-Forward

Hi all: 22 out of 31 treatments done! As of this week the fatigue has set in... I am definitely tired and doing my best to conserve my energy at work and at home. I am going to bed earlier... my 7 year old some nights is reading me a bedtime story!

My skin in the treatment area is pink/red...definitely looks like sunburn. The skin under my armpit is dark brown.  Continuing to apply Miaderm, now 4 times a day vs. 2. 

My skin in the treatment area is itchy at this point, on and off during the day, especially the nipple.

Almost there! Wishing everyone continued strength on their journey! 

Mayanne

Hello, everyone,

I just got my pathology results last night from my BS.  It's a relief that she got clear margins and nothing other than DCIS.  I'm going to be able to have radiation at a hospital closer to our house than where she's located and where I had surgery - so she'll contact them and I'll get a call to meet with the RO.  She said she likes the radiation to start - at the latest - 8 weeks post surgery (which was 12-30) - so I have time, she feels.  I thought I'd get a call today, but so far, have not.  I'd like to get going on this.

I was so nervous when the doctor called - really expecting to hear that I'd have to go back for clear margins - that I totally forgot to ask if the cells were still grade 3, if they found necrofication and if they found I was hormone negative (she had told me earlier they were going to re-check this.  My friend, a nurse, said that the RO will have the pathology report and will go over this with me.  I know I could call the BS but I'm so tired of thinking about it all.

I've been hoping to be in the prone position, because I have PVC's which sometimes are very irritating and attention-getting.  I don't want to take any chances with my heart getting more irregular (although the PVC's are benign, says the Cardiologist). 

Just a note about my lumpectomy.  I had very little discomfort from just after I woke up until now - 10 days later.  Although I had a prescription for pain meds, all I've taken for discomfort was 1 Tylenol one time when I attempted to sleep without my sports bra one night (and gravity tugged).  I still have steri strips on (until the third week), I'm slightly bruised, cannot see any changes in shape.  I think the doctor took very little tissue.  I'm wondering if my pain threshold might have changed because I had gone through emergency hernia/bowel resection three weeks earlier and had been recuperating from that even as I had the lumpectomy. 

So, as soon as I have the meeting with the RO and the setting up, I'll know when I begin.  I've heard that this hospital gives patients their choice of times to go.  My BS said I'll most likely have the usual 33 treatments to "clean things up".   Hope everyone is doing well today!

TeamKim

Hydavis42 -- My MO has recommended that I start my hormone therapy while I do rads, though it will not be on the same first day.  I have my sim tomorrow, then start rads next week sometime TBA.  Have an appt with MO next week to get prescription for hormone therapy and decide what is happening wig that.  I am a little nervous about starting during rads, just in case side effects worsen the fatigue or whatever....  But will ask questions and share my fears and go from there.  I am postmenopause, so at least I won't have hot flashes and the chemopause thing to contend with.

msmaples516

Today was-number 15 for me!! But they took new x-rays and added little more radiation.  I asked WHY? I saw the dr. today, she said because my breast is swelling from the radiation, they had widen the margins? I don't understand all that. Did anyone else have this problem? I just want to be over with. I am tired of going there.  I am hangin in though!!!  Hope ya'all have  great day!!!!

nursenadia

Hello teamkim

I have just started radiation January 2 ,2014 . Should have started 25 November but had cellulitis on right side. So delays and two more simulations later its finaly started. While getting "measured" I kept hearing "inf" thought I was a fairy princess from lord of the rings. My friend also getting rad treatments kept hearing "sup" and wondered if they were going to get soup. I finally put my nurses cap and figured it out inf=inferior and sup= superior. My friend and I had a good laugh. No princess for me and "no soup " for her.

Now my treatments and planning were taking at least 45 min I was getting cold with both "arms in the air " and shaking making  treatments hard for tech's to do blankets didn't help. So I bought a pair of knee high socks at Walmart cut the toe part off and used them as sleeves. That did it ,no more shaking. And I'm warm. Also 45 min not moving made my heels sore and numb a few times so I bought a small dish drying mat to put under my heals. That worked too. Hope some of this may help someone. 

Hope this is the right place to post

nursenadia

For me it wasn't. And I had 3 total because I got cellulitis on right mastectomy side. But then I'm not claustrophobic.

nursenadia

I am post menopausal too but heat waves did return. Its been almost three months now since I've been on them (arimidex) the heat waves don't come as often now just if I stress out. I wished they would have come when I was cold during simulation

Rlsteadman

What a relief to finally get that first one done! Only have 29 more to go.  Already moisturizing but the RO gave me a list with so many. What types is everyone using. I will ask her about emu oil but it isn't on the list. If you use it did your RO recommend it?

nursenadia

My RO suggested galaxobase cream. Its also in the pamphlet that they gave me. Fragrance free  because the fragrance may irritate the radiated skin. RO also said its the one cream that his patients had no reaction to

wyo

HI winter radiant ladies- it seems everyone is making it through one day at a time!!

A couple of "fall graduate" notes.  I did not get a schedule until simulation either I just requested early am- finally ended up getting 0730 before work.  Some days I went to yoga after rads with no problem stretching and flexing. 

nursenadia- what are they thinking with you cold/shaking like that )-:  My place had warm blankets which was a lovely comfort measure and felt soo good in the morning. I do like your resourceful way to deal with it- maybe you can market them to your rad center- make and sell to them hahaha.

the "itchies" boy I had that- lots of people post about itchy rashes with rads- I tried benadryl, prescription strength hydrocortisone creme and nothing helped- it lasted 3 weeks and has not returned (fingers crossed).  Woke me up at night with the itching and bumps then just like that gone.  I used aquaphor but sparingly and had no redness but some "tanning" under the arm.  

Everyone seems to have a different experience and if we post ours someone will know that its not something totally out of whack because others have had the same thing going on.  

Hang in there

Anonymous

wyo, thanks for the tip on the itchies. I broke out in a horrible rash after my surgery and hopefully I won't have a repeat with rads. I have my simulation tomorrow.

nursenadia, great idea to stay warm. I never would have thought of that.

RLsteadman, congratulations on your first - I hope you stay SE free.

TeamKim, good luck with your hormone therapy. I hope it all goes well for you while you are doing rads.

I noticed a pea size lump in my same breast and went to see the surgeon. She thinks it's a seroma but she ordered an US. Hopefully I can get that done before I start rads. Keeping a positive attitude. Better be good news or I'll be ticked!!

nursenadia

Hi Wyo 

they had the blankets too but only offered them when the shaking started and that's too late for me. I rather not market them cause it would cost to much for people to purchase . It only cost me 2$ 

MinusTwo

nursenadia - great idea about the long socks.  I'm always cold - even w/warm blankets.  But I might just leave the toes in since my hands are always cold too.

SlowDeep - I had horrible rash & itching after surgery also.  Even started up in my throat.  Turns out it was the Lovanox they routinely give to prevent blood clots.

MinusTwo

TeamKim - let us know what's decided about the hormone therapy.  My MO wants me to be on Herceptin infusions every 3 weeks all during rads.  I'm like you - who will know what's causing which SE?