Radiation Tips and Experiences

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Cindy D.
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RE: Radiation Tips and Experiences - Sunday, March 01, 2009 7:45 PM
When I was having rads, I got to meet a man who was having rads to his brain... he was using a cream called Recovery Cream, and his head looked great!! He gave me some and it was great!! It did not stain my clothes, was not really thick and smelled pretty good also.  My skin got a little sunburned, but never blistered and never felt too bad... you can get it online at:  http://www.recoverycream.com/

I have no interest in this product, other than it worked great for me...

take care,
cindy d.
56 yrs old
dx 1/10/07
Stage IIIa
ER/PR +,Her2 -
chemo: 4ac/4 taxol  5/24/07
lump: 6/18/07
mast: 7/16/07
tamoxifen: 7/25/07-2/9/09
rads:  10/25/07
clinical trial: avastin and xeloda, 12/07-11/08
arimidex/lupron: 2/09/09-12/28/11
clinical trial: femara 1/1/12 9 months on, 3 months off

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RE: Radiation Tips and Experiences - Tuesday, March 03, 2009 8:45 PM
I just finished radiation treatments in January of this year. My doctor said to use utter balm. It worked okay, but I got a little red. I remembered using apple cider vinegar for sun burns, and started splashing a little on when it started feeling tender. It turned tan and didn't get any worse and made it feel better. Now I can just barely see a tanned area there. I was pretty tired all of the time too, but had to drive 50 miles round trip every day for treatments. At least they were in the afternoon, I wasn't working, and I could sleep late if I wanted. The worst part for me was being "exposed" to so many different people! I thought it would be all women like with the mammograms.

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RE: Radiation Tips and Experiences - Tuesday, March 10, 2009 6:53 AM
Try contacting an Arbonne dealer for some Intelligence lotion/oil...has tons of natural extracts and was just the thing for my little leathery patch...comes in a little 2 oz bottle

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Re: Krista - Wednesday, March 11, 2009 12:00 PM
My wife will begin chemo next week for Stage 2 DCIS.  At our first consultation, her oncologist also recommended radiation therapy after the completion of her chemo.

However, neither myself nor my wife are convinced the radiation is needed in her case.  Her oncologist, who is well-respected in the area, gave us only general explanations as to why radiation was a good idea which left us feeling like the rad treatment was just a "to make sure" step more for the doctor's conscience than my wife's well-being.

We are not talking about taking pills for a few weeks "to make sure".  This is radiation!  Serious stuff that could have serious side affects down the road not to mention costs.

We are looking into a second and maybe a third opinion.

If anyone has decided not to have radiation follow-up, or has had their Oncologist provide deeper insight into its necessity post-chemo, please post their experience.

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Re: Krista - Wednesday, March 11, 2009 12:07 PM
I opted not to do radiation. There are clear clinical guidelines that determine whether or not an onc will recommend one of the following:

Radiation needed
No radiation needed
"Gray area:" only if patient wants no stone left unturned

I fell into the gray area.

If you haven't met with a radiation onc yet, I suggest you do so. He/she can give you much more detailed information about the pros/cons. And you have several months to make a final decision while your wife goes through chemo.
Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

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Re:Radiation Tips and Experiences - Friday, March 13, 2009 11:59 AM
Hi to all. I have not posted in awhile due to other health issues and a complete computer breakdown so I wanted to update.
When i was posting regularly during rad treatments I asked if anyone had ever experienced numbness in their hands from the rads, not chemo. No one had. I had to have an EMG in Dec. and it showed carpal tunnel in both hands. The left, the side of rads, had 0% reaction! Well, guess what? I hung in there and now have 0% sign that i ever had carpal tunnel! It so definitely was a side effect. As was the elevated calcium levels and my thyrois meds strength has been decreased. Guess the rads shrunk that too!
I only had radiation. No chemo.
I am posting this to let you all know that you are not crazy if you have these symptoms and don't let your radiologist tell you "that's not from us", as mine did! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrr.............................
lumpectomy 6/14/08,

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Re:Radiation Tips and Experiences - Monday, March 16, 2009 12:40 PM
Well, I burned in my clavicle/collar bone area pretty bad. It was a relief to know I was moving on to the boosts & they would just target my inciision & give the other areas a rest. My chest & collar bone area burned so bad & turned a deep red, almost purple. That area has peeled & the skin is bright red. Not really all that uncomfortable now. Underneath my breast, I also burned & the skin cracked from the breast touching the skin. It's very hard to air that area. LOL The rad onco gave me Carra Gauze pads which have some gel medication & I would just lay with those on my chest & neck & under my breast. After 2 days it did start feeling much better. I was also using Biafine & Silvadene. I had my last treatment today (YIPPEE) and had to stop in to have the rad onco take a quick look at my skin. I'm healing nicely & the nurse gave me a tube of Aquaphor to use for some areas. Other than the fatigue & the couple of days when I was really burnt, I found this much easier than chemo. I see the rad onco again in a month. Good Luck to everyone starting this part of the journey.
Vera 54yrs - NE Ohio
married to a great guy
dx 5/27/08
IDC Stage II
Lumpectomy clear margins 6/20/08
Tumor 2.3cm
2/9 nodes+
4 A/C &12 Taxol Done - Rads -DONE
Putting on the BIG GIRL PANTIES and Combat Boots

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Re:Radiation Tips and Experiences - Tuesday, March 24, 2009 1:43 AM
Ellen Jane,
Just read your message  and was wondering if the numbness ever went away.  I finished 25 rads a month ago and find that my arm is going numb at night.  Since this started near the end of my treatments I wonder if it is caused by the radiation and also if it is temporary or permanent. 

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Re:Radiation Tips and Experiences - Saturday, May 02, 2009 8:10 AM
After exhaustive research and discussion, my wife has decided not to do radiation, simple as that.  Her oncologist could not convince her (or me) that it was needed in her case.
Victoria (spouse), Dallas, 54
-Diagnosis: DCIS, Stage II,  (Nov. 20, 2008)
-Strong family history, BRCA 1&2 neg (Jan. 2009), Skeletal Scan neg, Liver ultrasound neg
-Bilateral radical mastectomy, 3/19 nodes positive  (Jan 30, 2009)
-Chemo TAC start (March 24, 2009) 

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Re: Krista - Saturday, May 02, 2009 1:36 PM
I found your post so interesting and it sort of shows that ONC's and the cancer centers have different opinions. I was told that chemo was my option under the cancer guidelines but they recommended it,  but yet according to the guidelines they said I would have to have radiation (no choice). It is just the opposite of you yet we have same dx. I guess I am glad I chose chemo. I'm covered either way and really after all I have read I wouldn't consider not having radiation. We are all just very different  individuals and we need to be informed and make our own decisions.

Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo

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Re: Krista - Saturday, May 02, 2009 6:31 PM
I think the difference is the previous poster's wife had a mastectomy and you had a lumpectomy.  When you choose the lumpectomy it is almost a given that you will do rads.  Strange as it seems I was much more willing to do rads than to think of chemo.    My Grandmother had rads in the 40's so it was full on zap all of your organs kind and she lived to be 76 and died from lung cancer (no she wasn't a smoker), maybe due to the rads she had 35 years earlier.   I watched my mom go through chemo for lung cancer (yes, she smoked but had quit 20 years before she died) and for me I just don't know if I could do it, mostly due to the emotional sucking it all in when I watch my mom go through it.
We each need to choose our own way......and as long as we do our research and make the best decision for us then that is the right thing to do.

Hope and strength,
Julie S

Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

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Re: Krista - Sunday, June 14, 2009 6:51 PM
Hello, This is my first post here, and I'm certainly not familiar with this site yet, but I thought I'd jump in, here.

I'm 54, DCIS, Stage 0, Grade 3. Lumpectomy, with clear margins 5/20. ER/PR highly pos. HER-2 pending, as I may be in a "study". I have my "planning" appt. with Radiation Oncologist tomorrow, and I expect to be on Tamoxifen following the Rads.

I've read thru this entire thread and I've taken some notes. THANKS to all of you who have made suggestions and shared your stories. I feel better prepared to face tomorrow, now.

Tricia Keegan
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Re: Krista - Sunday, June 14, 2009 7:35 PM
Hi Willietatoo's,

Please check the welcome forum where you can say hi to everyone and get lots of replies.

I'm sorry to have to welcome you here and am also sorry for your dx, however it sounds like this was found so early you'll have minimal treatment and a great prognosis!

Please feel free to post anywhere, the ladies here are a caring supportive group and will welcome you.

Please keep us posted on whats next for you,especially the her2 test which I can advise you on being her2+ myself.

Thanks for joining us and I hope we can help support you though this.
If you have nay questions about the site or treatment feel free to send me a private message or e mail:)
(or post here)!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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Re: Krista - Sunday, June 14, 2009 11:46 PM
Hi and welcome! So glad you found us! We are always happy to answer questions, give support, listen, laugh, celebrate or what ever else you may need.  Feel free ask any questions you may have......everything is discussed here! 
Take care of yourself and know we are around 24/7.  Hope to "talk" to you again soon!

Hope and strength,
Julie S ;-)
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

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Re: Krista - Monday, June 15, 2009 6:43 AM
Thanks for the welcomes! I'm still learning my way around this board, and I'll try to post an "introduction" with more information, soon.
Cycling class this AM and my Rad "planning" this afternoon, with some errands thrown in there, too.

Well, I'm back.
I had my radiation planning scan, markings and tattoos today. Pretty uneventful, except those tiny little dots can hardly be called "tattoos", in my estimation! LOL

I have appt for simulation on Fri, and then I guess the full schedule may be revealed to me.
30 treatments, total, is what the Rad. Onc. told me, today.
<message edited by Willietattoos on Monday, June 15, 2009 8:37 PM>

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Re:Radiation Tips and Experiences - Thursday, June 18, 2009 12:29 PM
Hi All,

I'm new here and thankful for the tips I've been reading.  Starting radiation for stage 1 DCIS (2 lumpectomies) in a few days.  Will have 30 treatments in total.  My end date is scheduled to be around August 5.  My husband and I have a 10th anniversary trip to St Lucia planned departing on August 20.  My rad oncologist thinks this will be plenty of time to recover - skin and energy!  We've been to this hotel before and it's a very active vacation - tennis, hiking, etc.  Any thoughts on this?  Advice?  I'm 41, B cup, no chemo, tan fairly easily, run 5 miles 3-5 times a week.  Thank you so much for your help and advice, it is greatly appreciated.  Best to all.

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Re:Radiation Tips and Experiences - Friday, July 03, 2009 8:47 AM
I was in the middle of my radiation last year at this time. One thing they did not tell me in advance, although they were very thorough in explaining the process, was that the radiation can go all the way through to your back. My shoulder blade area started getting sunburned and itchy and it kind of freaked me out that the rads went all the way through my body.
I started getting a few blisters at the very end of the treatment, and now a year later the radiated area remains tanned.
Of all the things we go through, the worst thing about rads is the daily travel to treatments.

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Re:Radiation Tips and Experiences - Monday, July 06, 2009 5:29 PM
Today I had my 13th radiation treatment of the 28 total. The doctor says I am doing better than I think I am. Well, she should know. She gave me Aquaphor which is basically Vaseline.

This is my first post. I want to thank everyone who has contributed to this thread. I have read it several times and learned so much.

When I read what others have been through, I am embarrassed to say that my experience has been difficult. I used to think I was tough.

Deb Allen
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Re:Radiation Tips and Experiences - Monday, July 06, 2009 5:40 PM
Thank you for sharing something positive you received from this site.  THAT is what we try to do, and by being brave enough to post for the first time, you are helping others to someday do the same. 

Please don't be embarrassed about anything.  YOU ARE TOUGH!!  Each story is unique.  I hope you continue to read, and share.  We are here.

Hugs, and welcome aboard sister!!PalsPals

Deb/aka Mimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all

Tricia Keegan
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Re:Radiation Tips and Experiences - Monday, July 06, 2009 7:52 PM
Thank you ladies,

K Carr,

You should be fine,I also went on vacation right after rads and had no problems:)    jusy remember you continue burning after rads are finished for about two weeks so cover up and use the sunscreen:)

27Islucky, thank you too, I also had very little problems with rads and found it a breeze after chemo. Thanks for posting and please let us know how you get on:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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