Winter rads 2014-2015

CoyoteNV

I think a poll would be helpful.

I would participate.

I think it would be helpful to have a list of questions people can respond to, to keep the info consistent.

then, we can look at the results and find out why such a difference.

Also, if there is a list, then people can take the list to their radiation place to ask someone to help give the answers.

an example:

What is the name, model of the machine used to provide the Radiation Treatment?

Is it a TomoTherapy machine?

How many treatments did you have?

total:

boost:

Did you have tattoos?

If yes, how many?

If no, did they use a sharpie?

What lotion/ gel was recommended to you?

What did you use?

I have a feeling this will reveal that there are different machines, approaches, etc.

BUT - if it means that some people are getting very bad skin reactions, NOT because of the person's skin type, but because of how the radiation is given, then this could be something to explore.

Perhaps because we are spread out over the world, there are some things our local centers are doing different, and we can put it all together.

A list of questions and responses, great idea! I'm surprised about the difference in methodologies, treatments, recommendations etc.

yikes1, you have a great idea there! "Moderators" want to weigh in on this?

We're all different and our journeys are unique, but only to a certain degree. Seems to me the standard of treatment and care across the USA is varied and sometimes lacking. I would expect difference across countries.

Like many of you, I've researched countless hours and haven't seen anything like this. Lots of "what to ask" lists but nothing that TRULY addresses the things we must know or the truth about what we may face.

I've seen the supposed research and been told by RO that RAD is pretty non eventful for most. No SE until 2-3 weeks and then minor burns and fatigue. Where's the rest of the information?

Sorry guys....if this is a stupid question just tell me.!!!! People keep talking about seroma....please explain to me...obviousley I must not have a "seroma" I just have no idea what it is...

This is our list of Winter Warriors as of January 31, 2015 - I'll do my best to keep it current. Let me know if it needs a change. 

October / November Start

MeneK – Oct 24 .................... MagicalBean - Oct 28......... Mmtagirl - Nov 3

MarieBernice6234 - Nov 4  ... Hope50 - Nov 5 ..................  dennyvol - Nov 5

CAS4 - Nov 6 ........................ Beachbaby65 - Nov 4 .......... CoyoteNV - Nov 10 

Lush61 - Nov 13 .................... Rosa54 - Nov 13 .................  Beachlady28 – Nov 17

Nomatterwhat - Nov 17 ......... LMVerma  Nov 18 ................ katieC12 – Nov 18

Lorrilynne - Nov 18 .............. Gongshow18 - Nov 20 .........Yikes1 - Nov 20

Birdgirl11 - Nov 23 .............  Perfectlyimperfect39 - Nov 23 Singsing1020 -

December Start

Pita119 - Dec 1 .................. SandyLovesLucy - Dec 1......... AnasNana - Dec 1

 HockeyCat - Dec 3 ......... . CanuckMom Dec 4 ................  MeanMomto3 - Dec 4

JustJean - Dec 5 ...............  runningcello - Dec 9 ............... carynbrit - Dec 10

 ForHisGlory - Dec 10 ........ Davida58 - Dec 10 ....................SCMom - Dec 11

ILCMom - Dec 15...........................  eileenpg - Dec 16 ...................... Linzer – Dec 16

WndrWoman - Dec 16 .............. sweetbanker - Dec 16 ....................  labelle - Dec 17 

Slavrich - Dec 27........................InGodshands - Dec 18 .................... Catie57 - Dec 18

lilactulip - Dec 18?..................... PoppyK - Dec 29 ............................. kpmacmill - Dec 29 

Jlynn13 - Dec 29 ...................... gretchy - Dec 29 .............................  Bellegirl - Dec 30

January Start

reader425 - Jan 2..................... Purrrrana99 - Jan 5........................... Cath57 - Jan 5 

Proffessor50 - Jan 5 ..................fossf - Jan 7 .....................................Lulubelle1 - Jan 8 

lescover - Jan 8 ........................Nancy6540 - Jan 12 ........................ Saltygirl - Jan 12 

aj103014 - Jan 12 .................... Fionascottie - Jan 13 ....................... Magdalene51 - Jan 15

quiggy - Jan 19 ........................ Bippy625 - Jan 20 ............................ Dacre - Jan 20

feelingoverwhelmed - Jan 20 ... KYBLUEEYES - Jan 20 .................. Beachbum1023 - Jan 22

Cavalier - Jan 22 .....................  mqt64 - jan 26 .............................  Sjacobs146 - Jan 26

Windgirl - Jan 28 

January Start Dates Not Known

KGotThis - Jan ? ..................ckr1956 - Jan ?

February Start

JeniferE - Feb 1 ........................ LARock - Feb 2 ............................. Chrissie29 - Feb 2

ladyb1234 - Feb 9 .................... Texas94 - Feb 16

FebruaryStart Dates Not Known

CassieCat - Feb ? .................... intothewoods - Feb ?

MaggieCat - Feb ?

No Start Date Yet

 funthing42 - ?

zjrosenthal  - Rads delayed by surgery, until ? Honorary Winter Warrior

Warriors who stopped for a visit, but for various reasons didn't stick around. No start date determined.  We wish them well.

Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg, gemmafromlondon, knittingPT, Shayne36

= Reported Completed

 = Should be Complete by now.

To CoyoteNV: I think everyone currently on this website would concur that you are soooo inspirational, kind, caring, knowledgable and a source of info! I know I find a tremendous amount of comfort from your posts....and that isn't meant to diminish other posts....I just think that CoyoteNV encourages everyone to be comfortable sharing and/or posting. Even though I have never, and probably never will, actually have met any of you guys on this website, I feel such a closeness. I don't feel so isolated. It's so difficult to try explain to "the others" what I'm feeling on any given day...much less explain dx, size, grades, location, treatments....chemo, radiation, just plain exhaustion.

to dacre,

I went back and found my previous post, and am copying and pasting it for you:

Dec 17, 2014 04:49PM yikes1 wrote:

Hi InGodshands,

I was told to use ONLY the brand Fruit of the Earth, Aloe Vera 100%gel.

no color added.

I just want you to know - it does have some preservative and other yucky sounding stuff, but after spending over two hours one night in a store looking at many, many products I just had to give in.

Products that advertised all natural had tons of ingredients.

This gel product is clear. I do not know where you live, but it was available in a small, 2 ounce size at target, a bigger size in local grocery store, and looks like available at walmart.

Other similar products had tons of more stuff in them.

I ended up ordering from Amazon because they had larger size (24 ounces) and it came with a pump --- the pump is the thing. After one time of trying to get it out of the 2 ounce size I could not squeeze it out. It is a gel and just did not come out.

the pump has made it easy to use. It is possible that you could put a pump from something else in the smaller size sold (I think 12 ounce).

It is cooling, easy to apply.

For me the aquafor ointment was difficult to spread on my skin.

BUT - I am not sure it will not wash off your markings.

I have tattoos.

Dec 17, 2014 04:54PM yikes1 wrote:

just to be clear - I do not know if it exists, but this gel is not 100% aloe vera, and nothing I found was. they all had some type of preservative.

it is 100% gel. Some reviewers on Amazon felt that was misleading.

Hi everyone;

I found the 24 oz pump Fruit of the Earth, Aloe Vera 100%gel. no color added. at Target. I live in Salem Oregon.

Yikes1, you're right, it's stated as pure but there are some other chemicals in there. I'm not aware of any without because the plant extract needs preservatives the way we use it and straight from the plant isn't practical.

I've been using it and aquafor , twice a day (min) and it doesn't seem to cause problems. It's cooling. I'm still pink and feeling like a fireball under my skin. So not sure if my plan is working or not. I also use the Spand-Gel pads. They are a hydrogel sheet specifically for radiation burns. They really pull down the burning but difficult to use unless you're at home.

I take 2-4 Advil 4-6 hours. Doesn't stop the pain, maybe less, easier to function.

All done!!!! I'm tired, sore, and itchy but I survived! I'm ready for a rest before tackling tamoxifen....taking a couple weeks off! My underarm area is the most sore and it is tight. I had a total of 36 treatments. 28 whole breast and 8 boosts. I rang the bell but what I really wanted to do is break down and just have a good cry! I was able to work a modified schedule of 6 hour days and my job is really busy (RN unit manager). I supposed to follow up in 2 weeks and after that I'm not sure I will keep seeing this RO. The visits just seem pointless anyway. All she wants to do is see my skin.

Contrary to what everyone else did, I didn't use a lot of creams. I had to use hydrocortisone cream for the itching and was told to use aquaphor. I found that my skin was more irritated when I ised the aquaphor so unless I was itchy I usually just went dry. No open areas here, but Iay have developed a seroma? Nothing is leaking but I can feel a huge lump undery node incision. Definitely have two cords that are tight that I'm trying to keep stretched

I have three small tattoos and so excited to rip off the last stickers covering my sharpie marks!

jean, i just....have no words. You are amazing.

Yup, i will do the survey.

I was so debilitated with fatigue today. Barely could do anything. I am airing out my arm, applying cool compresses, aloe. Now I am going to bed.

Sleep well and long my friends! Tomorrow is anotha day

Beachbum, I like the puppy idea! As far as I know I'm doing 30 straight treatments with no boosts. If I don't miss any due to weather or whatever I should be done March 6.

As far as the belly thing goes, it's what my RO recommended because of where my tumor was. I think I am more comfortable that way than I would have been on my back. I am a lefty. Not quite sure what kind of machine it is but I am going to ask.

PoppyK, thanks for the pillow idea and the seatbelt cover ideas.

I' m all for the poll idea too. It is amazing the difference in care plans.

Good luck everyone on the new week of "experiences" .

Hi JustJean,

Just so you know:

http://www.rxlist.com/ibuprofen-drug/indications-dosage.htm

Do not exceed 3200 mg total daily dose.

No, not nice at all.

I think you should call the rads clinic back, explain you are in pain, the Advil is not helping, and you need something else, and you are waiting for a call back, or again we will discuss a conference call!!

I am not sure what the pharmacists were referring to, the "typical pain reliever"?

justjean, I get the meds thing, the "typical" narcotics don't do much for me either, except make my skin feel crawly. And of course, docs are certain I'm full of @#!&. There's got to be pain meds that work! I do 2400+ mg of Advil and sometimes mix it up with aspirin too. I have autoimmune issues including Crohn's disease and the meds are a problem for that. What's a girl to do?

I'm sorry you are suffering today. Tomorrow will be better! ((((hugs))))

Coyote is fortunate enough to be treated with tomotherapy radiation. This means the radiation is directed to her tumor or the area where the tumor was. This is MUCH more precise than traditional radiation, which would account for fewer skin or tissue issues.

My facility offers proton radiation as well as tomotherapy. Proton therapy is extremely precise. If I was a candidate for either of these treatments, I would have chosen them. If you are in the southern California area, you should consider treatment at Loma Linda University Medical Center. They also have housing available if you are out of the area.

The main issue with the bras seems to be that the band compresses the skin under the breast. Due to the rads treatment, this skin is damaged so the pressure of the bra causes problems. I have 40Ds and am not comfortable without a bra. (After the cancer surgery, my breasts don't sag but they sure do giggle!) I took advice I read on this forum and stuffed a soft, fuzzy sock between my bad girl and the bra band.

I have Silvadene at home. One of my sons flipped his bike, which removed all of the skin and exposed the muscle tissue on his knee. We put Silvadene on the wound as a topical antibiotic. It is very creamy and stays in place well, but I was told by my MO that it is only to be used on open areas, such as when our skin opens or blisters pop.

Since the aloe gel doesn't seem to be penetrating my crispy, dead skin, I put coconut oil on the bad girl today. It seems to be doing a very good job of hydrating the skin. Aloe has a good cooling effect.

Wishing you all relief!

Yes, windgirl. Proton therapy is only appropriate for early stage bc. If I was node negative and my tumor pocket wasn't destroyed during the reconstructive portion of my surgery, I would have been a candidate for proton therapy. Both proton and tomotherapy reduce the amount of radiation given to other areas of the breast. While most of us may not be eligible for these treatments, I think it's important that we know about the treatments that are out there- so we can ask our docs about them as they relate to our cases.