Radiation Tips and Experiences

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Susan
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Radiation Tips and Experiences - Thursday, February 14, 2008 3:51 PM
HI ALL, Coco and I decided we wanted to make a thread for radiation treatments. It can become difficult to locate them once they are lost in the traffic flow here.
SO, for everyone doing radiation now, has it coming up, or all you wonderful ladies/gents full of experience...please post on this thread.
 
I think my last post was letting everyone know this was coming up for me. It did get postponed some. I had my alignment with the radiation machine today. I was perscribed BIAFINE to use 3 to 4 times a day starting today and throughout treatment...possibly beyond. My first treatment is Monday at 11:45. I hate the time, but they had nothing any earlier. I told them to put me on the "move up when others finish list." I would much prefer to go between 9 and 10, as the traffic is lighter then.
Here's hoping we can help this be a good experience for all that have to endure radiation. Coco, have a safe and wonderful trip...looking forward to your posts coming up soon....and everyone else that wants to march through this with us. WE ARE WARRIORS.    HUGS.
Susan in TN
dx 3/05/07
IDC 3 cm.,10% DCIS/Stage IIB/T2/G2
6/9 + lymph nodes
ER+ 90%/ PR-/ HER2-
A/C,Taxotere
Simple rt. mast.
Arimidex 
Radiation
carepage:blackeyedsue

dawn22222
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 3:58 PM
Hi Susan--
 
I have just completed 32 treatments and have THREE more left!! Thank heavens!!
 
I don't think my skin could take any more zapping.
 
My boob and surrounding area is red for the most part ... tho there is some tanning in some parts.
 
Vitamin E cream and Aloe are my friends ... many, many times a day I apply -- and do it from the very first day -- even tho you may see no skin changes until midway thru.
 
The worst place for me, and it's pretty darn red is on my abdomen underneath my boob ... be sure the lather EVERYWHERE!!
 
Good luck to all!
Dawn
 
 
 
47 yrs old
Apr 07 Armpit lump was cancerous node
Another bump next to it breast tissue/cancer
Stage III A
ER/PR+ HR-
A/C 11 wks
Axil Diss/lump 8/07, 22 nodes, 2+
Taxol 12 wks
37 Rads 2/21/08
Femara 5 yrs
D&C 3/08
Ooph 4/08

Jeanne Serbeck
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 3:59 PM
Hi Susan,
Well since you already had your simulation you have probably already been marked.  I was warned not to wear anything good for my markikng and simulation, but I forgot.  Even though they use permament marker it still messed up my bra.  So...for all of you who haven't been there yet?  Wear something that you don't mind getting marker on.  This applies throughout...at least it did for me.  The marker does wear off and they would have to occassionally remark me, so from the beginning I tried to wear clothes that I wouldn't mind being ruined.  I would sometimes bring something nicer with me and change into that afterwards if I wasn't remarked that day.  Radiation, at least getting it, is a piece of cake compared to chemo.  I did get progressively more and more tired though.  Towards the end waves of utter and total fatigue would hit me like a hot flash!  I would have to take a little catnap and then I was fine.  I did burn badly at the end, even with putting the lotion on, so make sure you always use it.  Good luck on what hopefully will be the last stage of your journey!  Jeanne

Houston, TX
Dx 9/30/05
Lumpectomy, SNB 10/17/05
Stage IIIc, 17/23 nodes positive
DD a/c
12 weeks Taxol
Mastectomy 5/06
Radiation 6 weeks
Femara
SURVIVOR!!!!

CMFR1
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 4:20 PM
I have 8 more boosts to go! My skin has held up amazingly well according to the doctor and the techs. Everyone is surprised on hwo well I did. I use Jeanne's cream after showering and immediately after treatment. I also put pure vitamin E oil and aloe on before bed. I have added aquaphor my nipple area which is very sore which I put on several times a day. I think the key is lots of lotions but only the ones they allow. I don't wear a bra when at home and on days I don't work, I wear a camisole with a shelf bra. This is to avoid abrasion of the skin

I also have some fatigue issues. Not as bad as with chemo but definitely there. Pace yourself.

Good luck to everyone!

Caroline
Diagnosed 05/2007, Stage IIA, 1.4cm tumor, ER/PR+, Her2-, lumpectomy, chemo and rads.
1981 Thyroid cancer
Otherwise I am consider myself a professional patient who feels as healthy as a horse on the way to the glue factory as I cope with all my other medical maladies
 

Judith
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 4:48 PM
Hi Susan,
 
Do not use any deodorant or cream prior to your radiation you should have been instructed on this as well as what deodorant to use. I liked Aquafor for the radiated area and went without a bra it was much  more comfortable. I also was given samples of cream at radiation.
 
You will be just fne!
 
Love,
Judy
JudyHendricks-
Lino Lakes,Mn
Dx:3-25-05@age 58
5-2-05 Lumpectomy DX:invasive ductal carcinoma& extensive dcis
33 rads Arimidex started 7/05 July 2010 stopped
carepage:judyhendricks
Dx Spine- osteopenia 7-06
12-06 started Boniva inj.every 3 months

Coco
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 5:25 PM
Hi All, 
This is great.  Thanks Susan for starting this thread.  We are already getting some good tips.
I had my first meeting with my radiation oncologist on Tuesday and was tattooed in three places.  After all the needle sticks with chemo this was like a mosquito bite.  They put me in a CT machine to line up where they wanted to radiate.
I am going away next week and am supposed to start treatments Feb 25th.  I'll post after I start.
Thanks again Susan.
[sm=pals.gif]Claudette 
Age 67
DX 10/8/07
10/29/07 LUMPECTOMY RT BREAST INVASIVE DUCTAL CARCINOMA
LYMPH NODES NEG Stage 1 Grade 3
Triple negative
4 cycles of Taxotere and Cytoxan Finished 1/29/08
35 Rads finished 4/11/08
Malvern, Pa

GottahaveFAITH
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 6:59 PM
I have completed 26 rads and 1 boost; 8 more boosts to go. 
 
I have held up remarkably well too.  My skin is merely tan, a little itchy under the arm though.  They said that because I'm small breasted (see, I knew that my little boobs would come in handy one day), my skin is tolerating it well.  They said that bigger breasted women usually have more issues.
 
They gave me a gel to use and I use it twice a day.  Now that I am doing my boosts, the doc said to double up on the gel on the nipple area.  
 
The fatigue hasn't been too bad either.  Some days are better than others. 
 
I really can't complain about the rads.  I did not have to have chemo and I always think it could be so much worse so I don't dare complain.  I thank God for the technology and advances in BC research everyday I lie under the rad machine.
 
Good luck to everyone!
<message edited by GottahaveFAITH on Thursday, February 14, 2008 7:48 PM>
Laura Age 42
Dx 10/10/07;4 surgeries thru 12/07 for clear margins
ER+PR+/HER2-
Grade 1 Stage 1 1.2 cm&2 mm tumors
IDC/DCIS Nodes CLEAR;Onco score 11
35 rads done;Start Tamoxifen 3/2/08
7yr old daughter dx w/Leukemia 4/9/07
God Has a Plan

fight4mom
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 7:52 PM
Is there any way to sticky this thread to keep it at the top?  It looks like mom is going to have to have the old style rads and I know she is upset about it.  Not to mention she has to travel 30+ miles every day to have it done.  I'd be interested in following this thread...
Krista
33 y.o. mom to 3 wonderful kids
daughter to a wonderful fighter of IDC, Ann

steph c.
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 8:38 PM
Hi all,
I finish rads on the 29th, God willing, etc.  My underarm area is very red and irritated.  I'm trying to keep using the aloe and the Aquafor.  I'm pretty tired and it happens suddenly.  I am trying to hang in there.
I didn't get very red on the breast area just pinkish so far.  So, that's my story.  Steph
48 yo gal from Texas!
ILC
Stage 2A, grade 3
node neg. triple neg.
Lumpectomy 6/6/07 2.7cm tumor
chemo AC x 4 every 2wks begin 7/16/07
followed by 12 weekly treatments Taxol
6wks rads starting 1/14/08 Done 3/1/08!

Susan
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Krista - Thursday, February 14, 2008 9:27 PM
We should be using this thread pretty often for awhile. It should also be easy to find in search, should it carry over to other pages for a day or so. We tried to think up a title that would make it easy to find. If you write down the subject, you can always find it through search that way, or by searching my name.
 
I hope this thread will help you and your mom get her through this. That is its intention. GOOD LUCK. HUGS.
Susan in TN
dx 3/05/07
IDC 3 cm.,10% DCIS/Stage IIB/T2/G2
6/9 + lymph nodes
ER+ 90%/ PR-/ HER2-
A/C,Taxotere
Simple rt. mast.
Arimidex 
Radiation
carepage:blackeyedsue

sunbearz
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RE: Radiation Tips and Experiences - Thursday, February 14, 2008 10:15 PM
Im on my second round in 10 years.There is really nothing to feel.Imaginary beams. Towards the end there could be some skin burning like a sunburn. I found udder cream and aloe to do the job.
I think a lot of the fear is psychological. You lay there expecting to feel something and there is nothing but BEEEEEEEP.5min later your out of there. Its just the daily grind of every day.The room is cold and your exposed.
I told my Rad Onc that I felt tired and sleepy after. He said its usually a psychological response. He said Im coming in after work, being exposed and in a cold room,expecting to feel something which I wont,so afterwards Ive worn myself out.He said your relying on a machine which is stressfull to some.
Jill
sig Jill
age 54
Dx98,Mast 12 pos nodes
Her- ER-pr-BRCA-
Stage iv bone mets 2003 rads to hip
chemo-A/C Xeloda,Zometa,Taxol. Taxotere
Gemsar,Doxil-Abraxine
Spot liver and lung-gone
2008 met to subclav nodes-Rads
5/08 Taxotere
Faslodex
Taxols again,scalp mets
Liver,lung, lymph mets 2009
Femara
Ixempra
Testosterone ,Zometa-stable

Donna Roy
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 6:56 AM
Hi All,
 
I finished my rads in May '07 and I burned pretty bad.  I'm very fair, never been able to tan and I had had my masectomy so the boost was aimed for my incision scar.  So if and when any of you start to have issues with burning let me know because I pretty much went thru every product imaginable to get relief.  The bright side is the treatments do end and the healing begins right away.
Good luck to all and I'll keep you in my thoughts and prayers!
 
Donna
dx 10-04-06 invasive ductal
8/44 lymph nodes positive
masectomy 10-12-06
chemo 11-14-06 to 02-20-07
radiation 03-28-07 to 05-11-07 badly burned
continuing clinical trial of Avastin, completed 12/27/07!
Tamoxifen started 03-20-07

NurseCarol
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 6:59 AM
I am glad you started this...I am on radiation day #4 today.  Seems like only 1000 to go, but it's better than chemo so far!!
 
I look forward to reading and contributing to this thread!  Thanks!
 
Carol
Carol 47 in Florida
IDC Grade 2, Stage 2 8/22/07 Tumor 2.1 cm
ER+ PR+ Her2 NEG
Lumpectomy with ax node dissection 9/13/07
ONLY 1/33 nodes positive
4 AC started 10/8/07;4 Taxol started 12/3/07
Radiation done 3/27/08
Carepage: Carolspages.

Jennifer Mishe
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 7:55 AM
Susan,
Congratulations on reaching yet another milestone in getting to the other side of treatment.  I had 32 treatments in 2005.  My radiation oncologists prescribed Radiacream, I know there was someone else on this board that loved the Radiagel.  They are both made by Carrington Labs and can be ordered off their website if they are not available at your local pharmacy.  They were over the counter, about $5 a tube but they were behind the pharmacy desk at the CVS next to my cancer center.  In my case radiation was an emotional nightmare. Because I had moved, my insurance was in the area I had moved from, about a 3 hr. drive.  I ended up staying with my daughter for 6 weeks and I would drive home after my treatment on Friday and drive back up to be there at 8:30 Monday morning.  I was one of those that got hit by really bad fatigue early on, I believe Tricia had a hard time with it also.  I agree about don't wear good bras, clothing etc as I did ruin a bra and white shirt with the markings. I wore my front close sports bra after that. I could not stand to go without a bra, any jiggle really hurt.  Because my appt. was early, I would shower in the morning, go directly to my appt., and slather on my cream afterwards in the dressing room.  One of the weekends I came home I forgot my cream at my daughters so I tried Aquafor and it didn't work for me, burned like crazy, never forgot my cream again. The things I want to advise about are the after treatment issues.  I was very prone to infections, developed asthma, have been continually anemic and still struggle with fatigue.  Things have improved because I have a really good PC who has listened to me and tried to offer solutions.  My radiation onc seems slightly defensive, wants to maintain that these things are nothing to do with the radiation, but my PC and gyn believe they do and from what I've seen on message boards, I think they are a lot more common than what the oncs want to admit. Also, as time goes on, don't freak about your lumpy bumpy breasts, radiation causes changes for up to 10 years and these can show up as lumps.  I've had one biopsied which proved to be radiation scar tissue.  It is just frustrating because now its hard to tell whats normal and what is not.  Also, during treatment, no matter how badly I felt fatigue wise, I walked at least a mile and pushed for 2 every day.  I also listened to my body and napped alot.  I do believe the walking helped tremendously.  Hope you all have smooth sailing through your treatments.  God bless.[sm=pals.gif]
Jennifer
DCIS
lumpectomy 5/02/05
32 rad tx comp 7/07/05
tamoxifen
comp. hysterectomy 4/04/06
Paducah, KY

Suzy
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 8:01 AM
Okay guys...I'm just having my 1st appt. with my Radiology Oncologist on Tuesday the 19th....his office told me it would take 1-2 hrs. for the 1st visit...not sure what to expect...
I should be doing 30 treatments....
 
Are all the creams y'all are talking about over the counter?...
 
Thanks!...Susan
Susan Black, Kingwood, TX
DCIS 2/03 Rt.Mast.w/TramFlap
Rt.Brst Recurrence 6/4/07
IDC Stage 2, Grade 3
Lumpectomy 8/7/07
ER/PR+ HER2-
A/Cx4;Taxolx4:9/14/07
Chemo end 2/6/08
Rads:30 end 4/15/08
8/7 Port/out
Carepg:Susanrocks

Ruth Coates
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 8:26 AM
Hi there all,
With the first visit you get CT scan and they tally up all the areas to be radiated and map it out on you.  You may get tattoo pinpoints in specific places.  They make a form for your arms and head to keep you in the same position.  They ask a lot of questions about how your treatments went and the meds you are on now. 

Don't use regular creams OTC.  They have metals in them or oils which will enhance or interfere with the rads and burn you worse or not be effective at all.  Use only what they give you or pure aloe gel.  This is important!

Thos of you who can stand it, I would NOT wear abra at all! Period.  But then I am a double mast and don't care if people can see I have no shelf.  But comfort wise you need to be mindful of your skin and bras RUB!  NOTHING should rub or chafe this area or you will have problems guaranteed!  Just a caveat....

The old clothes idea is also good, in that something you don't mind getting stained in the inside,  it usually doesn't come through...

Good luck all. I tired halfway thru this and was exhausted when done, but it is doable, just tedious!  For burns think silvdene cream!
Love Ruth

Paw Paw MI 
6/06 IDC,7/06 IBC (Inflammatory BC) RT
2 lumpectomies still no clear margins
chemo 8/06-12/06 
Bilat mast 1/07
rads 2/07, arimidex 6 mos, 1/08 femara, 10/08 aromasin
6/10 tamoxifen, now Rheum Arthritis
Pet scan NED x3 yrs

alb
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 8:26 AM
Radiation is going to be different for everyone.  Not all of you will have the  same reactions, some of course will be worse than others.  Just remember all can be dealt with.  Stay on alert for all symptoms.  The redness and heat can be tolerated with a saline soak.  The exhaustion, take a nap.  Try to eat healthily:  lots of protein and fruit and veggies.  Women who are  overweight or who have large breasts may in fact have more problems, just remember to stay on top of all problems and bring them to the attention of your care givers as they can best prescribe remedies for your particular situation.  My rad. onc. showed be exactly how she was going to treat me with all the pictures from my ct. Hopefully your rad onc will be as attentive as mine was.  They really do try to miss your heart and lungs, but sometimes that can be a problem.  The treatments were pretty much a piece of cake, it was the aftereffects that were bad, but also manageable.  This is just one more step on the road to NED.  Good luck to all of you. 
Springboro Oh.
June 07 @58
1.3 cm invasive lobular er+ pr+ Her2/Neu - lumpectomy,sentinel node neg., radiation femara, moved on to aromasin

CMFR1
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 9:15 AM
The cream I was told to use is www.jeanscream.com. It was behind the counter at the pharmacy at the hospital I go to for treatment and is not cheap. also available online.
Caroline
Diagnosed 05/2007, Stage IIA, 1.4cm tumor, ER/PR+, Her2-, lumpectomy, chemo and rads.
1981 Thyroid cancer
Otherwise I am consider myself a professional patient who feels as healthy as a horse on the way to the glue factory as I cope with all my other medical maladies
 

Alison Irwin
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 9:52 AM
My best radiation tip:
 
STARBUCKS GIFT CARD!
 
Seriously caffeine was my best friend during radiation.  I didn't miss a single day of work and did radiation on my lunch break.  The caffeine was a godsend!
 
 
Alison, 45. Woodland, WA.
DX 08/14/06, Left Mast, Nodes13-/1+, 4-AC/1-Taxol/3-Taxotere, Rads, BRCA neg.,Tram flap. Medullary carcinoma, triple negative.

Susan
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RE: Radiation Tips and Experiences - Friday, February 15, 2008 10:52 AM
Sounds like we are off to a good start here. THANKS ALL. I would like to comment on a few of the suggestions made here and also post again what all my rad. onc. told me COULD happen.
 
First of all, from lots of others going through radiation during this past 10 months I have been around these boards, I went and purchased cheap t-shirts as bra substitutes for radiation. I remembered about the dye getting on the clothes and how the gels and creams can soak into the contact clothing. I found the cheap shirts at Big Lots, two to a pack for about $8.00. I can use them for this and throw them away if they won't clean up to suit me. Since I have only "one girl" I just wear big shirts over the t-shirts so no one can tell I am braless. I guess the lopsided still is obvious, but I have learned to live with it (something I thought I would not be able to accomplish).
 
Twice, my rad. onc. went over the side effects with me. I certainly hope I remember them all right now. First, and at the top of the list was fatigue. He just told me to listen to my body and when it said to nap...to nap. He said weight loss was rather common as often people lose their appetite...ok...good diet plan for me. He says getting pink, then red, then brown and oozing was possible for me, since he feels it will take that much radiation to benefit me. He said my ribs on the right side (radiated side) will get weak/brittle. He told me to avoid car accidents, as the air bag could break some ribs for up to two years. (Don't think anyone plans this little event). I ASKED him about lung damage. He says NO, but I KNOW it has happened to others here, I have read it, so we will see. Of course, he HAD to tell me that radiation can cause cancer. I am sure the law makes them tell this, as chemo can also do this. I have 10 tattoos, so they will not be drawing on me anymore. They line me up with the tattoo marks, so I won't have to deal with the ink issues that some do.
My first visit for simulation took an hour and one half. He drew all over me and made x-rays with the simulation machine. We then went to the CT scan, where he used wire to outline the radiation area. Before I left he placed glue in 5 spots, drew black X's and then put clear stickers over them. I was instructed to make sure these stayed in place until my next visit, or it would all have to be redone. I was instructed to have my back to the shower water, no soap on them, etc. I had to go back 4 days later to have one redone. My bra was rubbing it and made it loose, so I began wearing my t-shirts. The second visit, was more drawing, more precise this time, and then my lovely tattoo marks. They made actual photographs of the area to be radiated and also pictures of this "mystery rash" I have. This second visit took an hour. My third and final visit before I actually begin the treatments, took about 20 minutes. They actually took me into the radiation room and lined up the machine that will actually radiate me. They took more x-rays. Then the nurse gave me the perscription for the BIAFINE cream that I am to use as a preventative measure for burning. It is to postpone the burn for as far into the future as possible. NO DEODERANTS with aluminum...that is a no no. No rubbing in the shower or with a towel in the radiated area. I will see a nurse and the rad. onc. on Monday after my first treatment. I will then see a nurse and the rad. onc. once a week until I finish.
 
I really fear this lung issue. I had plurisy (sp?) at age 12. Bronchitis twice a year that eventually lead to pnemonia twice a year, until the pnemonia shot came out...what a life saver for me. I am being radiated on the same side as I had the plurisy. They are radiating up to my neck, I have the tattoo to prove it, so as to get the lymph nodes above my collar bone. My tumor was so high in my breast, the rad. onc. says it needs to be done. Since no lymph nodes were removed under my arm, he is getting that area too, along with the nodes between my breasts and all the way down to where my drains exited my body. Basically, the whole right side rib area and my neck. For those that know me here and have kept up with all my ODD troubles, I think I am about due something EASY and I sure hope radiation is it. HUGS.
Susan in TN
dx 3/05/07
IDC 3 cm.,10% DCIS/Stage IIB/T2/G2
6/9 + lymph nodes
ER+ 90%/ PR-/ HER2-
A/C,Taxotere
Simple rt. mast.
Arimidex 
Radiation
carepage:blackeyedsue

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