October Rads. 2009

Hi Everyone!

I was diagnosed with Triple Negative breast cancer in June 2008 and have had 2 surgeries, 5 months of dose dense chemotherapy and 26 rads so far. The good news--only 8 more radiation treatments to go and I'm home free! Here's a link to my daily cancer blog for all the gory details--http://3nbreastcancer.blogspot.com/

So far my radiation has been smooth sailing. The only major SEs are burnt skin and minor fatigue issues (not enough to stop working every day) I have a GREAT schedule and it is partly due to having the rad blasts in the PM. My daily schedule -- work 7 AM - 1 PM. Drive to Stanford (1 hour each way min) treatments at 2:15. See rad onc 2 X week after treatment. Drive home. Home by 4 - 5 and relax and rest in the evening. So far this schedule has worked for me. One evening a week I have a support group to lead but otherwise I am home reading or watching TV.

LittleRed, I have not started my radiation yet (that is in 2 more days), but when my oncologist discussed my case, she said she does not start patients on Tamoxifen until after radiation: said it was too hard to handle both at the same time. She waits about a month to 6 weeks after radiation ends to start. Can you ask your doctor why, in your case, he/she is giving you Tamoxifen at the same time? You will be on Tamoxifen for 5 years...why can't you wait a bit a bit to start?

I also could not find pure (or almost pure) Aloe at Walgreens. Just Aloe cream with about 20 other ingredients...and aloe well down the list. Maybe only larger stores carry it? Mine is kind of small. If I can't find it at Walmart tomorrow I'm giving up and buying an Aloe plant. Now THAT would be natural.

I asked the pharmacist for ideas today when I couldn't find the Aloe there. I said the techs had only mentioned Aquaphor. He said Aquaphor is almost half Vaseline (or "petrolatum"), and Eucerin is just Aquaphor plus water! He said they used to make up "Homemade" Eucerin in the VA hospital from Aquaphor and water when he worked in the VA hospital to save money.

Now, in my mind, Vaseline is NOT a moisturizer. All it can do is seal in any moisture that is there in the skin.  I use it on chapped knuckles in the winter but after using a moisturizer. Maybe I can try that with radiation too, if it gets really burned or raw: apply the Aquaphor after a moisturizer...once I FIND the moisturizer, that is.

I am not clear on why they do the X rays.  They must be a low dosage X ray if they show soft tissue and not just bones.

After the pharmacist told me that I went over to that aisle and read the labels! I thought it odd that a product named "Aquaphor" does not contain any water. I have a sample the tech gave me but had not read the label. I had asked the pharmacist about that but he said most people find it too greasy. The Eucerin regular cream I saw did list mostly the same ingredients, except water tops the list, before the petrolatum and others. I did see that Eucerin makes a variety of products.

I did find the Aloe gel at Walmart today. I had to hunt in several stores for it but at least now I have it. I'm going to start out with that tomorrow. I also got an aloe lotion in a small tube easy to fit in my purse to take with to the treatments. It has a lot in it besides aloe, but is easy to carry.

Hi jenniferb- and welcome to October rads. I am sure it has been a long road to travel since June of last year, so glad for you that you only have 8 left. Congratulations.  

Great to read that radiation has been mostly smoothe sailing for you.

be sure to use the recommended aloe vera or whatever you were told to use for the skin burn, and as I am sure you know a little rest helps the fatigue.

Be well,

dsgirl

I was wondering about the Vitamin E cream, since several people on here mentioned using it. Also just looked up the ingredients on the "Jean's Cream" others recommended, and found that it is Aloe with Vitamin E. Since it is pretty expensive, and I've already got the Aloe, maybe I can make my own! I saw a few E creams in the store yesterday but they had many other ingredients as well, and E well down the list.

I was told to use Vitamin E cream, and am using it twice daily, and so far (half way) I have no burning at all.

Hi all

I personally have always liked anything vitamin e-, like it for the skin, to help healing of a cut or whatever, I use the e-oil for that, and I like body lotions with vitamin-e. Seems to absorb well and the skin feels good. Glad it's working for you Sakura.

I am tempted to ask doc about using it, although the aloe vera I am allowed seems to be doing a good job keeping my skin from burning, however, it seems to take a long time to absorb into my skin, I have several times been in a hurry to get dressed only to find it adhering to my camisole, my bad, no problems as such, since I just wet it and it does not stick anymore, and no skin coming off.

PauldingMom, maybe I Just apply too much ? you said it absorbed well for you.

Have a great day

dsgirl

"I guess I'll just have to go to the radiation place, eat a cookie and lie on their floor with my hands over my head for a half hour"

Brookside - I love that idea. And I love your attitude !!!

It's a jig saw puzzle that patients can work on as they come in and wait? What a great idea! I hope it's a picture of something inspiring.

I did not have  to wait at all for my first session: they were standing there waiting for me when I walked in, 3 minutes early. But I don't expect it will be the norm. I waited 30 to 45 minutes each for the 3 planning sessions. I asked at the time if that would happen for my actual treatments and they said no.

I did not expect to feel anything during the treatment, and was a bit surprised that I did. 2 zaps from 2 different directions, with about 2 minutes in between. Each time I felt a little pinpoint of pain, nowhere near the lumpectomy site (which is still a bit numb), in fact, at a point directly opposite. Then a few twinges throughout the day and night afterward.

Thank you for your post.  I had my first rad on the 13th and totally broke down when I got home.  It was the most lonely I have ever felt since this ordeal began in June.  It's hard to escape the reality of BC when you are in front of those lead shields.  Wow, what a shock it has been.  I thought I was on top of it all.  It had gotten better each day, but I am still concerned about the entire treatment.  Unlike chemo and surgery, there isn't much information about rads.  I just hope it all works out.

Well folks, I made it through my 1st four (of 28) radiation treatments. I don't resemble burnt bacon yet, but yesterday I noticed tiny little bumps in the affected area that look like a mild heat rash, and today I'm itching a little bit. I bought Fruit of the Earth 100% Pure Aloe Vera Gel, and I'm to use it 2x a day (once immediately after treatment and once before bed). Reports I've read from others who used this state that they had no problems with burning/peeling skin. ...yeah...

Speaking of which, as I waited in the interior waiting area (where you can be half-dressed) to be called back to the radiation chamber, a woman came into the dressing room pitching a fit! She was totally distressed because one of the techs had removed some of the circular-tape that protected the markings on the side of her chest, and the SKIN CAME OFF WITH THE TAPE!!! She showed us the raw, pink area, and I immediately shifted into self-protective-clear-your-mind-or-think-of-dead-puppies mode! She is in her 5th week of treatment (with another week to go) and clearly her skin was breaking down (yet another potential side effect). Thankfully, my treatments will only BE 5.5 weeks, so hopefully, any of the truly nasty side effects will either not occur or just be beginning just as it's time to end; and the healing will come faster that way.

In the meantime, I will use the aloe vera gel faithfully and wash the affected area like a baby's bottom (squeezing soapy water gently and never scrubbing, patting dry) with Ivory or Dove soap. One study has said that drinking one glass of red wine daily while in radiation will help with skin toxicity issues. When I asked my radiation oncologist if I could have one glass of wine daily, she said I could have two; one for me and one for her! Gotta love medical science! LOL!!!

Have a Wonderful Weekend Everyone! Alaina

linn56-that must have been a big shock to see 3 people you hadn't seen before.  At the joint where I hang out there are 3 different people- 2 women (both named Cindy) and a guy.  Everyday 2 of those 3 are there, so I've gotten used to them after treatment #13 today.  I must admit, I like it better when it's the 2 Cindys, but the guy's ok.

Alaina-your exclamation "self-preservation-clear-your-mind-or-think of dead puppies mode" shook me with laughter.  I can only imagine how HORRIFYING that must have been for you!

Joni2 

Welcome Apolline,  My med onc wants me to do Arimidex, Femara or (I can't think of the other one's name right now) and if it turns out my insurance won't cover any of those then she wants me on Tamoxifen after rads.  All I can say is, you are your best advocate--don't "settle"-talk with who you need to, to feel like you have done what is needed for you.

Joni2 

Apolline - Welcome to October Rads. You'll find the women here helpful, caring and a great resource.

For  you and anyone else with itchiness, soreness and/or little blisters, consider asking your radonc or the techs about vinegar soaks (mixing 9 parts cold water with 1 part Apple Cider Vinegar; so 10% ACV or 1 1/8 cupsWater  to 1/8 cup ACV) and dunking a wash cloth in it then wringing it out and laying it over your chest and then underarm, I've done 22 treatments, no blisters, no itchiness and only a little redness. Although it sounds odd and old fashioned, apparenty the Apple Cider Vinegar prevents the radiation from staying in the skin which, for me at least, is unintentional/collateral damage. My radonc and the on staff physicist said this is fine for normal rads but not for the boosts which are intentially shallower; so ask before trying. It does work wonders. Here's my research, if you want to read it or show it to the docs:

1) For Burns Caused By Heat or Sun - as a folk/ natural cure

(a) Multiple anecdotal examples; see quotes at the bottom of this posting http://www.earthclinic.com/CURES/burns5.html,

(b) Natural cures for burns: Apple Cider Vinegar or Vinegar  - "Though both are equally effective, apple cider vinegar works a little better than plain vinegar, but they are both just fine. Applying ACV or vinegar to the burn will take away the pain almost instantly. Give it a few minutes if it's a deep and serious burn. They are also equally effective for sunburns. Applying it on the sunburn will take away the sting almost instantly and prevent the skin from peeling as well." http://www.copperwiki.org/index.php/Natural_cures_for_burns

2) Radiation related to cancer - `

(a) for itching (highly diluted)                                                                             Re:Radiation Tips and Experiences - Saturday, February 21, 2009 12:39 PM , "Saw my radiation oncologist this week & told her I was itching a little. She said to use 1% Hydrocortisone Cream in addition to the Biafine cream. She also told me to do vinegar soaks up to 4 times day, because vinegar is amazing! The paperwork she gave me says 1TBL white vinegar to a pint of water. Soak a clean washcloth in the solution & apply for 15 minutes at a time. My itching isn't real bad yet, so haven't tried it but wanted to pass this info on." http://apps.komen.org/Forums/tm.aspx?m=195411&mpage=26

(b) for douching re: HDR for Gynecological Cancer                                                            If using High Dose Radiation for Gynecological cancer,                                                               " For some women, douching with vinegar and water will be recommended to help clean out any dead tissue. Your doctor will tell you if this is right for you. You can buy a douche kit at your local pharmacy" http://www.oncolink.org/treatment/article.cfm?c=5&s=33&id=371&p=2

3) Radioactiive  Decontamination                                                                                      In instances of contamination by Radioactive Material, for skin decontamination, sprinkle or pour vinegar on the affected area, an area. Radiation Safety Program, Univesity of Wisconsin  http://www2.fpm.wisc.edu/safety/Radiation/radreviews/Rr691.pdf

For use on Uunbroken skin to remove  P-32 contamination http://www.umanitoba.ca/admin/human_resources/ehso/media/RadProcPersonalDecon.pdf   also, http://www.cityu.edu.hk/fmo/doc/safety_env/safety_health/radiationsafetygl.pdf                  + there are many additional similar references.

Anecdotal Evidence re: burns and sunburns:

01/05/2007: Jessica from Raleigh, nc writes: "I burned my hand from the steam on my tea pot (I never knew how hot that can be!). I sat there with ice, and it still hurt. So I went on here and saw the ACV remedy for burns. I first tried it with gauze soaked in the ACV which was fine, but I wanted to type, so I put on some a white cotton glove (the kind you sleep in with moisturizer) and soaked it with the ACV. It took about an hour for the burning to go away. I took a nap and when I woke up not only had the pain dissapeared but there is nary a red spot on my hand! PS. That tea I was making was for a cold, so while I had the ACV out, I poured some into my water bottle & drank that, and have been sipping it all night. It is about six hours later and I am finally feeling a bit better."

10/28/2006: Larry from Saunderstown, RI writes: "Regular vinegar on a sunburn takes the pain out of a sunburn. Growing up in southern Rhode Island sunburns could be pretty severe. I was in a bar one day with a sunburned friend (He said you can't get burned because it was windy out) when the lady bartender suggested putting vinegar on it. Other than smelling like a french fry ( Rhode Islanders put vinegar on their fries) he felt a lot better some quick!"

06/27/2006: Chet from Mishawaka IN writes: "I was cutting some metal with a torch and forgot i had just cut it and laid it to the side and was cutting another piece when i put my hand down on the one i just got done, cutting the skin instantly... discolored to a sickly grey color from the burn - had a bottle of apple cider vinegar and water i had been drinking. i grabbed it and poured it on the burn. shortly after, most of the pain went away but amazingly it never blistered. worked for me."

03/17/2006: Alicia from Spanaway, WA writes: "ever since i was little i've always used apple cider vinegar to take the sting out of a bad sunburn. It smells really bad, but it took the sting away almost immediately, and as a child, that was a very important thing. It also kept my skin from peeling.."

Tim from Camphill, PA writes: "After burning my thumb badly on the oven, I soaked it in organic apple cider vinegar for a few minutes and the severe pain stopped immediately! Within an hour I completely forgot I had even burned myself -- I couldn't feel a thing. And no scar!"

Stacey from Seattle, Washington writes: "My best friend's mom swears ASV works on burns. When I recently burned my thumb on the oven I immediately poured some in a small cup and soaked my thumb in it for awhile and sure enough!.....no burn pain, no scarring!"

Linda from Little Rock, MS writes: "If you burn yourself, put ACV on the burn. The burn will stop burning quickly and will not blister as bad, if at all."

Verna from Bellingham, WA writes: "I have been using Apple cider vinegar for a long time. Once I accidentally put my hand on a burner that had just been turned off. My hand had a rings on it from the burner. I quickly laid my hand in a plate of raw vinegar. No burn scars or pain."

Chris from Santa Rosa, CA writes: "ACV really works ! I couldn't believe it. After ten min. the burn went completely away!"

01/21/2009: Angela from Hamilton, Ontario, Canada writes: "1. Vinegar: for sun burns. Saturate a cloth with white vinegar and apply it often. Relieves the sting, heat, and itch (apply when you feel the symptoms return). Amazingly, the smell goes quickly, so no need to worry about the idea of walking around smelling of french fries!