October 2010 rads

chiefswife

Hi DiamondGirl, I'm scheduled to get a total of 33 treatments, 28 regular and then 5 boost. I asked them about how many zaps I'm getting and they said 5, at 3 different angles, and it's my right breast involved. How old are you, I'm 51. I can't wait till next spring, all this crap will be behind us. You hang in there.

JFV

chiefswife-  Wow it is rare that people know the area I live in!  Very cool.  Did you know Billy Joel grew up in Hicksville?

chiefswife

Hi Joan, yeah I heard that from my husband,  my husband has 4 brothers, they all graduated from the same high school. including Billy!!! You want to know what I liked about Long Island, one word: Carvel Ice Cream, okay that's 3 but who's counting. That ice cream is beyond delicious!!!! 

QCA

Well, I had tx #7 today, so I'm a little farther along than some of you.  I've been using aquaphor, but it's sooo greasy. 

JFV, thanks for sharing about the non-vaseline type Eucerin.  I'm going to get some tomorrow.  We do have a Walmart, but going to CVS or Walgreens will be a LOT better. Our Walmart is a real ordeal to go to!  I was told today that I could also use cetaphil but that it didn't provide "as much moisture" as the aquaphor.  To me, the aquaphor just seems to be greasing things down!

hmh23

Well, I've had 3 radiation treatments so far and I am already getting pink.  Has anyone else had this experience?  I've been using Aloe Vera gel but I think I'm switching to Aquafor or Eucerin. 

Heather

CT124

Betsy P-we will be starting the same day. looks like I will have 25 txs.

designer mom-I agree completely. How can there not be fatigue when so much tissue is being damaged by RT. I think our bodies are feeling like they have had enough right now.

I   will be interested in hearing if you can shiwld thyroid. I asked about it and was told it would block radiation of a ngroup of nodes. I am truly concerned about this.

slh_tn

I had treatment #2 today and asked the technician to point out the area that is considered radiated skin since I had no idea if I was placing lotion on the right place on my chest.    The tech outlined the area for me with a washable marker so I can see. I was surprised to see how big the area was.  Wow!  

DiamondGirl

Hi ladies,

When the rad machine is pointing at you (at an angle), do you count the number of zaps (or ticks) that it makes?  If I'm counting correctly, think I get 12 from each direction.  And I get it at 2 angles.  Can you share what you are getting?  Does the area feel warmer? 

I had my 2nd tx today and 31 more to go.  I can feel that the inside is a bit heated up (so to speak).  Yes Aquafor is a bit greasy, so I tried a sample of the Miaderm tonight will see how it goes.

AICa

DiamondGirl, I get two zaps from below angled up - one very long and one short; then two zaps from above, angled  down - both short. When it's above me, I can see the mechanism inside the machine move between zaps to change the radiation area. I'm having 28 full breast rads then 8 to the lumpectomy area (which the Dr. said is generously defined).

Here's what I've learned about what to apply: Aloe is said to heal burns, including radiation burns.Lotion, on the other hand, is supposed to prevent water loss from damaged cells "by placing an oily substance over the skin to keep water in or by attracting water to the outer skin layer from the inner skin layer."

I know the aloe is helping me as I'm fair skinned and, after 16 treatments, my breast is only pink, although I have a rash on the upper portion of my breast where it has previously seen the sun. 

DawnKY

hm23--I noticed pinkness starting after treatment #4, and started using Aquaphor then.  Yesterday was #11, and honestly I'm not sure if it's helping or not.  I'm still pink and getting pinker, and the sensitivity is beginning to be present for longer.  I've also noticed pigment changes to my aureola and nipple, and both and my breast in general all appear to be getting bigger.  Not happy with those at all. If this is happening at #11, what's it going to be like at #25 or #33? 

hmh23

CT124;

At my 2nd rad treatment, I asked about blocking the thyroid and it's exposure and I was told and shown on the machine they use, that the machine itself protects all areas not meant to get any radiation whatsoever. 

You might want to ask as older machines require an actual block of some sort.

Heather

ranafazal

Sad that some people would use this forum for an ulterior purpose.....mamaof3bugs and quiche,thanks for being vigilant.

Anyway on the subject of creams, my rad onc suggested Glaxal Base, Lubriderm or any other cream with Aloe Vera, just make sure it's fragrance and lanolin free..the idea is keep the skin moisturized through the rad doses.

5 down,28 more to go!

gingen424

Hello, I am jumping in here. I had my simulation/tattoos yesterday and will have the dry run on Oct. 20, with the 1st "real" treatment on the 21st, followed by a total of 30 treatments altogether. I had a lumpectomy (with a bonus gall bladder removal because the MRI showed gallstones) on Sept. 2, then another surgery on the 21st of Sept. because the margins were not clear. Have Stage 1, Grade 3, IDC, w/ "lymphvascular invasion". I was convinced I would have to have chemo, but the Oncotype DX test saved me. My score was a 16, so chemo was not necessary. I had myself steeled emotionally for it..so I burst into tears when he said I didn't need it! I feel extremely lucky and admire all of you who have or are continuing to push thru it.

I may be naive, but I am not THAT worried about radiation. I know I will be tired, that my skin will have complications, but...I am thankful that I was able to avoid chemo and that I will be around to see my kids get married and eventually have kids of their own! (I'm 54 with a 24 yr old son and 20 yr old daughter)...I try to keep everything in perspective.

My rad onc gave me the Aquifor (sp?) and Miaderm samples...I ordered the Miaderm last night online and have begun moisturizing the area in preparation. The rad nurse told me to get the skin in the best shape I can before I start. I live in Tucson, and we are ALWAYS treating our skin for dryness! I was also using Vitamin E oil recommended by my surgeon to treat the incisions from surgery...I wonder if anyone continues to use that into rad treatment?

Anyway, hello, and thanks for all your great insights and recommendations. I will print out the NEJM article about shorter treatments to bring with me next week! 

DesignerMom

Okay, here we go!  I finally got them to confirm my start date for rads....it's this coming Monday,  they only called me this afternoon!!  Jeez!  I asked if I would see my RO (he's on vacation).  I asked if there was any orientation (they will tell me things before I get zapped).  I am not happy, feel like they just schedule everyone and don't bother asking if there are any questions.  I even had to point out that I thought they needed to check my bloods as my last chemo was 3 weeks ago and my counts were so low.  Needless to say, I am extremely anxious.  What did THEY forget in their oversheduled rush to run patients through??  The receptionist kept saying "if you have any questions, just call us."  Call WHO?  The receptionist?  I told her that I would just go back to the internet and do my own research to fill in the holes.  I have learned more here on BCO anyway.

I have read about the creams that the ROs recommend and have my concerns. As many of you have noted, they are filled with parabens and chemicals.  I stopped using things with these ingredients LONG ago and don't plan on using them now.  She said to use Dove unscented soap. It is filled with chemicals, not even soap.  I have done so much research on bodycare products.   I was in the process of developing my ownline of all natural bodycare products when I was diagnosed.  It came to a screeching halt as I couldn't trust my sense of smell during chemo to deternine what essential oil blends smelled best.  Man oh man did things smell weird! I plan on being my very own little radiation guinea pig. For now, I will use my unscented, all-natural shea soap and creams.  I'll let you guys know what works.  I just hate that the only options these ROs give us are samples of chemical-laden pharmaceutical junk.  I'm going to have a good time educating my RO about better options!

kittycat

I am supposed to start radiation in November, if all goes well with my chemo - 2 more weekly treatments of Taxol.  I started reading this thread to get myself familiar with what to expect.  I also have a couple friends that have gone through radiation after chemo.  I hope it doesn't make me as fatigued.  Good luck everyone with rads! 

kittycat

Designermom - let me know what you find out about the creams.  I refuse to use anything with parabens. 

DiamondGirl

Welcome gingen424, sorry to meet you here on this type of circumstance.  What does "lymphvascular invasion" mean, because your dx said 0/1 (meaning 0 node affected).  We have a pretty similar dx, mine is Gr. 2 instead of Gr. 1.  I didn't need chemo either, onco score was 15 and you are right about getting yourself psyched for the chemo and I too bursted out crying (happy tears).

Thanks for reminding me not to think of Radiation as a big deal, because I was not wanting radiation and asked my surgeon if I could skip it.  He said "no".  I have to remember to be thankful about not getting chemo and just deal with the rads.

On the question about Vit. E, my rad onc say "NO" to vit. E.  You may want to check it out with your rad onc (not just the technicians) about what to put.  I was given 3 choices (2 were samples).  Calendula cream (I got it at Whole Foods store), and received Aquafor and Miaderm as samples.  

I will be doing my 3rd tx today, 30 more to go!  

LtotheK

DesignerMom, Dove Unscented has chemicals??  I am such a dupe, I thought unscented meant okay.  Back to the drawing board.  I have a good health food store in town, am going to find some honey-based soap (really good, I've found) and I use straight oils, like Jojoba, to moisturize.  Not my radiated breast, though.

I paid a small fortune for my Biafine cream, and am disappointed it has parabens in it.  I am going to get some Aloe, though in the past, my experience with it was not stellar. It can be very drying, my guess is, it takes the "sting" out of a burn, but you still need moisture. Aquafor, etc, have petroleum.

Parabens stink, but there are a whole lot of other preservatives and junk in non-paraben things, too that you don't necessarily hear about every day.  Most over-the-counter moisturizers have at least one offending ingredient. The jury seems mixed on parabens, some feel it isn't a big risk.  But I'd tend to agree, if you can help it, why on earth would you risk it.

I read about Medihoney on some other topics about radiation here.  I just don't have the heart to spend that kind of money right now. This whole thing, between co-pays and over-the-counter meds not covered has cost a minor fortune!

chiefswife

Hi Ladies, I just got home from treatment number 4, 29 more to go. The doctor looked me over today and said I was doing fine and also said it was too early for me to start applying anything to my skin. He went further to say that if I should decide I want to go ahead and use something then he said of all things, Corn Huskers Lotion. Now I'm not reccommending this to anyone here, I'm only telling you what he told me.

I was told that my radiated boob could possibly swell some during treatment but in the end this boob will be firmer amd just slightly smaller than the other one. I'm okay with that since it's already the bigger one of the two anyway. 

Good luck to all of us, and welcome to the new ladies. 

QCA

Is anybody as far along in their treatments as I am?  Today I had #8, went just fine, no problems.  My husband and I went to Lowe's when I got back and then out to lunch.  About that time, I started to feel like I'd been run over by a truck!  So very tired, and still am.  I thought it was too early for fatigue to set in, and I thought maybe I wouldn't get it. I don't feel bad, I'm not sick, just overwhelmingly tired, all of a sudden.  This is weird.

AICa

How many appointments do you have? In addition to rads 5 days a week, I'm expected to see a nurse and then my Rad Onc every week. I'm working, busy, and can't see a reason to see a nurse 15 minutes before I see a doctor. 

mamaof3bugs

QCA tomorrow I will have #14!!  I cannot believe how quickly they are going...I saw my RO today.  My boob is still swelled but he isn't concerned and my skin is holding up fabulously!  I am a little more tired this week than last but NOTHING like chemo weeks!  AICa I see my Dr. every Thursday right after my zap.  Hope all is well with everyone!!  Angi

gingen424

Thanks, DiamondGirl...actually, I had originally hit Grade 1 instead of Grade 3...which I am. I was told the "lymphvascular invasion indicated" on my pathology report was different than having it show up in the lymph nodes themselves..this apparently was seen in the tumor itself, and had nothing to do with the lymph nodes under the arm...

I appreciate your reply, as I have been slathering the Vit E oil on every night as I wait for the miaderm to come in the mail.

I feel relieved today as I talked to the principal at the high school I work at yesterday as she was making her rounds. She let me know that I can "call for help" anytime during the radiation therapy if I need to go in my office and put my head down...(I'm the librarian). That was a major relief as I gear up for next week.

I have also perused the AI hormone therapy message boards here, as that is the next thing I'll be looking at once the radiation is over...I think the hardest thing to get my head around is that there is always another "thing" down the road to learn about and worry about...this journey never ends.

But, again, I try every day to take a moment just to be glad I'm still here!!

Thanks again. 

CELinVA

I just finished 22 out of 33 total today and I am burned, definitely, but it's surprisingly not bothersome with an advil.  I also felt some fatigue after 2 weeks, but it also never got in the way of anything and it has lessened.  I've adjusted my sleeping to add an hour a night and that seems to be very effective.  I'm an ambien taker, so that probably helps. too.  I think I expected it all to be so much worse; I've tried to do all the things people on here have recommended too - lots of water, lots of protein, moisturizer (miaderm), sleep, exercise almost every day.  I work 2 days a week at home, so it helps to not have to dress for work everyday.  The most burned part of me is skin that has been exposed over the years.  I think it's nice to know you can crash if you need to (like the librarian can).

Rose6

DG Hi, I am in my end of 2nd week of rads, I was told at first NOT to use lotion so I literally carried around a lil bottle of cornstarch "to dust whenever posiible, it gets all over everything,,,,, when I talked to the nurse the other day and told her I am so sore and dry, she gave me samples of AQUAPHOR which is very soothing...as long as you use it after treatment, at bedtime and shower before you go back

I am concerned too about your posts RECOVERY, I have read thenm all and you dont write anything about your treatment, discomfort, etc......hmmmmmmmI hope for the best that you are just trying to be helpful.

    working mom, is the rad onc, telling you about the 5% damage to heart? that really concerns me because they are radiating my left breast. Love to all and have a good weekend

chiefswife

Hi everyone, I am home from treatment number 5!!!! How many left, oh yeah just 28!!! So far I am still doing good as far as the skin goes, no problems at all. Thank God I did tell my husband on the way though that if it gets real bad I'm quiting and taking my chances. there's no need to suffer in red painful skin so if it gets to that point I quit.

Have a great weekend everone!!! 

1marmalade1

Just returned from #13 of 25.  Besides losing Monday because of Canadian Thanksgiving, they wouldn't give me rads on Thursday - I said I had been having chest pain, and they sent me directly to ER to make sure I wasn't having cardiac problems.  Spent 7 hours there.  Oh, well - short story, everything checked out OK and today's rads went as scheduled.

Have a nice weekend, everybody!

joan888

Haven't posted in a while.  I just completed my 8th treatment.  Only 19 to go and I am not suffering any side effects yet what so ever.  I sure hope that things stay that way, but sort of expect that it won't.  Per my doctor's orders, I am using Aquaphor every night... messy stuff and then use Special Care Cream three times during the day.  The rad onc office supplies both of them for free... as much as you need.  Guess it is working for me.

Good luck to everyone in treatment.  Have a great weekend.

chiefswife

For all the ladies that are ahead of me in treatment and are posting that you're doing well I thank you cause to be honest with you this stuff scares me. I am doing good so far but I too am worried that it's not going to last, but we'll see what happens, I just find it hard to stay positive all the time, but I'm trying.................I just do alot of praying, I even pray while I'm on that table getting zapped. Whatever works........................ right. 

joan888

chiefswife.... please stay positive.  I have done some praying on the table also.  Not much else you can do at that point anyway... and I am sure that it works.