November Rads 2009

shelleyr25

Hi everyone!

Just back from my first set up appt. and am due to have my first treatment on Thursday night. Tomorrow I go for the scan and then I am good to go. The tatoos barely hurt a bit and blend right into my lovely age spots! LOL!! Going to grab myself a glass of wine and some leftover halloween candy and call it a night!! 

Niknak0320

hello everyone  Another week starts...

I had #4 today.  I began wearing my regular bra again over the weekend too.  It wasn't uncomfortable so I'll give it a shot until I'm no longer able to.  I did order two mastectomy sports bras from TLC that I can switch to when they arrive

debnyc

one down, 32 to go. so glad today's over. i was so scared. my heart was beating out of my chest during the whole thing. now that i know what to expect, i'm hoping tomorrow shouldn't be so bad.

Christine2000

ust wanted to share with you my meltdown at radiation today-- (I finished chemo sept 16, dbl MX on Oct 1st-- started rads 11/04)The radiation folks  called me yesterday and said I have to drop everything and come in this afternoon (instead of my usual 9am) because they need to redo the xrays to make an "adjustment"-- I panicked that this means more treatments, I am timed perfectly to go on a Caribbean vacation on Dec 21st and I don't want to not go!it looks like it will be okay-- its just so HARD to get a straight answer about why they even have to redo everything, what exactly they're "adjusting"etc. Just "the doctor says so". And I am sick and tired of techs HALF MY AGE telling me that I am "such a good girl!" for holding my hands immobile over my head for 15 minutes. There just has to be a way to preserve more dignity in this.

shelleyr25

Oh Christine, that really sucks. You deserve a good answer as to why you had to come in. I do know that this whole radiation thing is a very precise process and I am sure they just want to be positive that they are radiating the correct spots. Hang in there and keep thinking of yourself on a beautiful white sand beach with a pina colada in your hand!!!!

DebNY- Glad it wasnt so bad, my first treatment will be on Thursday evening...fingers are crossed.

sopris

It must be meltdown time.  I had mine today.  I have been asking for detailed information of the treatment plan and haven't gotten it.  Then I was told on day 20 of 33 that my lymphnodes were being nuked.  I flipped out.  I have had it with being a good girl while I am roasted to death in the radiation room while I lie half naked and posed like a prisoner in handcuffs.  Today I refused further treatment until they explained EVERYTHING they were doing to me and why.  I will meet with the doc and explain why I am going to refuse further treatment unless they change the treatment field.  I also do not plan to allow the boost.  This is not as 'easy' as they claim.  They dial up the cGys and roast you in a more focused beam.  That way the blistering and weeping isn't happening where they have to deal with it.  Informed consent requires that the full range of treatment and side effects be disclosed.  I hope you have better providers than I do.

Lauren3

I had #5 yesterday and cannot believe how exhausted I am already!!!

cherneski

Hi all, I thought I was starting Monday, but then it was Tues. (yesterday), I thought they were finishing my sim, and starting rads same day.  Nope, so I start rads today. 

I did NOT like the tech that did my sim yesterday, and she is one of the techs I will see daily.  Nope didnt like her a bit, I was about to smack the gum out of here mouth.  Sorry but as I am lying on the table, bald, deformed, not moving or breathing too hard and you are chewing gum in my ear, I think I should be able to smack it out of your mouth.  OK sorry, thanks for letting me rant on that.

Next rant~ I saw it posted above but I NEED an answer.  They are radiating my neck, and collar bone, I asked the tech why if I only had positive nodes in my arm pit, she told me "we have to get those nodes".  So I asked "did I have positive nodes there?  She told me she didn't know.  So now I have to wait till Monday to ask the DR.?  I think NOT!  I will corner the Dr. today until I get an answer.  I am sick to death of being dismissed and not told the whole story.  If it is a precaution, fine, if not that means once again my stage went up!  I know I know staging doesn't mean anything.  Tell that to my crazy head! 

As far as skin care goes I was told to use pure CLEAR aloe minimum of 3 times a day.  And if possible to lay with skin exposed for a while after.  I am not working right now so I don't care who sees me with no boobs, so I am taking advantage of these 5 weeks that I can go bra less.  Before bi-mx I had some very big girls at the age of 11 I could no longer go bra less, this will be a welcomed change.  It is chilly out so I ppl wont be able to really notice with big baggy sweatshirt.

On a good note, the family and I had a great time this past weekend.

Hugs to all!  

Crusading through!

Lauren3

cherneski - I asked the same thing about the nodes under my collarbone.  Apparently those nodes can't be removed or tested during surgery (?) so there's a possibility they could have microscopic cells in them that weren't caught by our CAT/PET scans.  The rads are to take care of anything that wasn't cleared out during chemo.  That's my understanding anyway (???)  Please someone correct me if I'm wrong.

I think I might be more tired than I've ever been in my life.  6 rads down.  22-29 to go.  Lord help me.

cherneski

Lauren, and everyone else so tired, I am so sorry for you.  I hope I dont get it.  Chemo kicked the sh@t out of me I dont think I can handle another 5 weeks of feeling like cr@p.

I plan on making them show me everything today, what, where and why they are treating it.  I really think I am stage lllC and just not being told.  Or it just might be that my brain is fried and cant take anymore.  UGGG

mom2acat

I am having rads done on my hip. Yesterday was the 1st of 14 treatments; they are doing low dose because I had rads in that area before, in 2007. Anyway, while I was there, when I saw the nurse after my treatment, she showed me the pictures of the CT scan, and how they are marked for what areas are getting the radiation, and how much. It was really helpful for me to see that, to know exactly where those rads are going and in how large an area.

 I was also given a tube of clear aloe gel to use on the area, as I was the last two times I had rads. Besides the hip, I had rads to the chest wall in in 2004. 

Momushka

Hi all,

 Just got home from treatment #8 (out of 33).  Not so bad - so far.

I have two questions maybe you guys can help with.

1. I've planned a Zometa infusion in a few days - is it a bad idea to do Zometa while I'm still doing rads?  The rads fatigue has not hit me yet.

2. What is Zoladex - I see some of you are taking Tamoxifen, Zometa and Zoladex. I'm into my third month of Tamoxifen, but no one's ever mentioned Zoladex to me.

Thanks!

cs34

hi everyone,

i have to join the Nov 2009 rads group. i just sent a reply to Deb (cherneski's) thread of why radiation is needed at the collar bone. hi again Deb!

i pretty much lost it on that so i'll try to settle down on this one.

i have my first treatment tomorrow and i'm terrified. kicking and screaming inside...

i'm going to take a tranquilizer because taking them worked for me for the MRI's. i'm hoping after the shock is over i won't need them every day.

i'm also getting my nodes done. i had to have three simulations because my right TE was in the way. so now i have a very deflated right boob.

i had to wait for months to start chemo because my skin went nuts after the operation. (double mastectomy with latt flap.) i can't imagine what it's going to do with radiation!!!!

i just don't know how much more i can take. sorry to be a downer.

Chevyboy

Hi Gals!  I've been reading a lot about your radiation treatments!  Have any of you had experience with the "Mammocet" device delivering the radiation seeds? 

Can you give me more information about it?  Also I just wish I could understand more about the lymph nodes, etc!  I know they will take out at least one, to test, then maybe more, but is it POSSIBLE to not have any nodes removed?   My Sister-in-law says she didn't have ANY removed during her lumpectomy, because it is dangerous!  Does anyone believe this?  Thanks for any help you can give...Jeannette

shelleyr25

Momushka-Zoladex is similar to tamoxifen but given every 3 months as an injection. It also stops the production of estrogen in pre-menopausal women therefore attempting to prevent a reoccurance of breast cancer

debnyc

2 down 3l to go today was so fast. in and out in l5 minutes. i had no time to stress. piece of cake!

HATE the aquafor. so greasy and gross. will switch to aloe as soon as i can find l00% pure aloe. anyone know if whole foods carries it? haven't been able to find it in a drug store.

Momushka

Thanks shelleyr25.  Interesting - maybe Zoladex is only for pre-menopausal women and that explains why it was not mentioned to me (58 and post-menopausal).  Any experience with Zometa during radiation?  I'm just slightly worried about the flu-type side effects everyone talks about making it difficult to get to radiation the next day.  On the other hand, I'd just like to do it already.  I will just "positively think" myself out of any Zometa aches and pains.

 It's amazing how everyone is so different.  I've heard some women don't take Tamoxifen during rads, but this wasn't mentioned to me as an option at all.

I'm sure I'll just go for it and hope for the best.......thanks.

cs34

debnyc,

hi. glad to hear you had a good day.

were you terrified and now it's ok? my first is tomorrow and i'm terrified. i actually feel a TON better reading that i'm not the only one who was scared.

i live in NJ and work in NYC so i'm going to NYU. they gave me a cream that they supply called Calendula lotion--the maker is Boiron, i believe. maybe you can find it on the internet?

Sunone

debnyc - CVS pharmacies carries a 100% aloe vera gel.  I am using the Calendula cream that cs34 mentions above, I believe whole foods carries it. you can go to boironusa.com and search calendula cream, it will bring up the product and then you can search for store nearby you that carry it. I just had treatment 15 today and my skin has been doing good, the only thing I have used was the calendula cream, the nurse asked me how I liked it and she said they were getting good feedback from patients about it.

cs34

kime,

glad to hear you like it. whewww...that makes me feel good.

is your skin sensitive by any chance? i just want to hear that someone has horrible skin (like me) and they didn't have any issues!

the nurse at NYU said they had the best feedback with this cream so i hope everyone reads this, they're able to get it and it works for them!!!

shelleyr25

Momushka-Yes, it is definitely for pre-menopausal (I am 43).

The Zometa really did knock me for a loop. I had a lot of aches and pains especially at night. Maybe you can have them give it to you on a Friday and that way you can stay in bed all weekend. 

My onc put me on all 3 drugs before I even started rads...he said that was the new protocol that he is following. I have been on them for 5 weeks already and start rads tomorrow.

Sunone

cs34,

My skin is pretty fair, but not really sensitive. I have my rad treatments about 10 am, so I shower in the morning, using Dove Sensative skin soap very lightly, and don't put on any cream until right after rads, I bring it with me and put it on in the dressing room after the rads, I use it before bed at night and usually one other time in between during the day. My radiated skin has the tiniest bit of pink color to it now, but that is all.

debnyc

cs34 and kime, thanks for the info on the lotions. i do want to check out the calendula cream, but guess i'll ask my nurse first. they were very specific about what i could use. also told me to use only dove or basis soap.

cs34, of course i was terrified the first time. i think it's only natural to be scared. having gotten through #2 so quickly and easily, the thought of #3 tomorrow is starting to feel like more of an inconvenience than anything else. good luck! you'll be fine. btw, my medical onc is at nyu, but i'm doing radiation at beth israel because it's closer. 

MarciaGoudie

New to the list.

Hi everyone.

I have just discovered this forum. I have been to a few other bc sites, but I was looking for a place to share/talk with women who are in the same place as me. I guess I fit in the November rads. I was dx in August, had  a lumpectomy and snb 9-30. I count myself as one of the lucky ones, if there were a category for bc patients. My cancer was caught early. The surgeon was able to  excise the tumor with clear margins and no lymph node involvement.

Today was #10 of 30 rads treatments. So far I am not sunburned but have noticed a lot of tenderness in my breast. I have also noticed that it is SHRINKING. I guess you'd say I am large...D size and  my radiated breast now so much smaller. About rads 5 I gave up my bras in favor of a camisole. The irratition under my arm made me uncomfortable. Since I am on medical/disbility leave it doesn't matter what underwear I have one.

I couldn't imagine functioning with my class of 24, 9 year olds. I am happy for the disability ins. even if it only pays 75%. It'l be a slim holiday this year. I am married and my husbnad isn't working, (out of work builing contractor). I have three grown kids and four grandbabies. We'll manage anyway.

I haven't read all of the posts on this thread but I am looking to share thoughts and feelings about treatment.

Marcia

shelleyr25

Hi Marcia~

Welcome!!! You look to have a similar dx as I have except my surgeon went back in a second time in October just to make sure the margins were fully clear (they were) and now I am starting rads tomorrow. I think you will like it here, lots of great women sharing their thoughts and feelings, I would be lost without them!

EngTchr

Debnyc, Walmart carries pure aloe, too.  I'm slathering it on twice a day.  Had #7 today and so far no SEs. 

Becky

buccaneersdj

Hi everyone, I guess I'm joining you guys for rads in November, yeah! Ya right hardly thrilled to be here. Hi Gillyone!!! Glad to see you here with me. I get my last chemo tomorrow #6 TAC. When I get my Neulasta on Friday I will also get my Sims and CAT scan. I will start 37 rads on Nov. 17th. It seems that so many people in here have much more recent surgery that me, I had surgery June 19 and just starting rads, I guess some had chemo before surgery. Christine2000- I would love it if you would personal message me more about your "diet" I have gained 27 lbs since diagnosed and started at the same weight as you, I know this is supposed to be the #1 way of preventing reoccurance! I feel so fat right now, with no energy what-so-ever! Anyway how do rads compare to chemo!!!! {{{{{HUGS}}}}} Donna

cs34

christine2000,

i second that. i'm gaining weight now and i would like to eat better. i know it really makes you feel good when you eat good too and i'll just about ANYTHING right now to feel good. for me, after chemo was worse than during but that's another thread...

today is the day...my first treatment. it's a little strange because i'm excited too because this is the beginning of the last stretch for me, except for making the exchange.

i hope you're all doing as well as can be today!

gillyone

Hi ladies and welcome to Donna!

I am STILL waiting to hear when I will start rads. Did the simulation and got tattoos last week and so just waiting. If they don't hurry up I could be joining the December start group.

hobie644

Hi ladies, I'm in the November club too. Started my treatments on 11/3.  So far, I'm not having any major se...yet, but I've noticed my left breast is warm to the touch compared to my right one.