Winter RADS 2012 Club...Please come join the fun!

0000

Okay...I am jumping in...My first of 16 treatments was today. I also had a follow up appointment with the BS. He gave me the impression that he was not too fond of the RO decision to go with the 16 day treatment. Gee, I wish these docs would communicate with eachother and get on the same page. I was given a sticky wound gel called Carrasyn to apply 3xs a day. But I cannot apply it right before treatment. Has anyone tried this gel? Does it help?

Sonson: I am right ahead of you. My appointments will be around 11:15.

aliyahgirl

Allurbad, I use calendula lotion made by Boiron.  I called them today to see how calen. lotions differ depending on manufacturer, but they didn't know. Lady I spoke to said to compare the ingredients on your container to the ingredients on Boiron website to compare active/inactive ingredients and %s. www.boironus.com.  It is good stuff.   Good luck.

Sonson, would your RO respond to you if you told him/her that you INSIST on having an initial LE evaluation either by an LE specialist or by an experienced RO nurse in the department?  One of the ways they stay on top of it is they measure the circumference of both your arms at several points from the shoulder down to the wrist and keep them for as a baseline for comparison.  There are also other ways they measure like amt of water displacement of each arm and others.  As soon as any changes occur in the affected arm, they start watching you like a hawk and start you on proactive care of the arm to prevent any lymphedema from progressing.  You really have to be a strong advocate for yourself here b/c you want to minimize any opportunity for progression.  In fact, PT or even OT now manages LE and maybe you could request a session so they could teach you how to be proactive with your arm.  I don't have LE but I work in a compay that publishes a Guidebook on it. Also, good luck tomorrow!  May the journey be quick and uneventful!

Cypher, thanks for the info on parabens.  I've cut them out completely (I think) and have suggested to my daughters to do the same.  Why didn't my RO on ONC tell me to do that?  What else haven't they told me?

Life - you must be going nuts with this new development.  Do you think it would be worthwhile requesting a second opinion or a consultation with a senior doc (RO or Onc) at your hospital or at another major hospital?  If your doc has never seen this before or has seen it only once or twice, you may way another set of eyeballs looking at those scans and voicing an opinion. Numbers (amout of experience) really really count.   I met another lady at my facility who landed up going to Houston MD Anderson (we're on the east coast) in Texas for a consultation because her situation was so uncommon  that her RO got her an appointment with someone who has seen more of those cases than she (the RO) did. 

Bookworm, welcome.  I'm in a pretty similar situation to you - I just finished 17/30 today and am meeting my onc on Thurs to talk about meds.  I don't like the side effects that I've heard about.  My friend is on arimidex and told me she dried up like a prune.  Uch.

Loneskier, one down - one less to go!  Good luck, may the days pass uneventfully!

Loving

Finished 8/35. Skin holding up but having a hard time keeping the energy up in the evening. I think my youngest who is 7 is done with mommy being sick. I'm planning to take my kids for a tour of the radiation center during their Christmas break (dr. suggested) I hope this will help them understand why I'm tired. Exercise has helped with my fatigue. I walked with a good friend today and it was fun! Also, I had an unexpected compliment right before my treatment from a mom at school about my glass being half full. It sure put a extra bounce in my step at my "tanning session" today.

Lifeonitsside

Aliyahgirl - my RO is one of the medical directors and I didn't get the impression that he didn't know what it was. That's mind of the scary part. As soon as he felt my neck, it seemed that he knew what was going on. I'm going to see how I feel when I meet with him on Wednesday and then decide if I need a second opinion. I am kinda freaked out tonight but trying to stay calm.

momtopiglet

Welcome Doxie and Bookworm! So today I counted up my treatments and just figured out I finished 25 of 35! I'm getting kind of tan on that side, with some pinkish-red areas in the center, but not bad.

I had x-rays today too.  It was also my day to see the Dr.  I whined about my fatigue, so he ordered a CBC and thyroid check.  Not sure when those will come back, but since I'm there every day, I'm sure I'll find out soon enough.....

Loving- what a great idea to take the kids for a tour!  I thought of that....and then that thought went away, haha.  They have hung out in the waiting room and played DS while they ate the free cookies, though.  They are definitely tired of me kind of dragging all the time.  Then again, I'm pretty tired of it too.

cypher

Sonson, cvmarilyn – we all started rads today, how did it go for you?  I’m super grumpy for some reason.  Hassle to get there, hassle to get home, I have pain while driving that I never had before, and they put me in a painful position (re prior car accident injury) during rads.  Other than that it’s peachy.  I didn’t feel a thing, but I guess that’s to be expected.   

Aliyahgirl, agree re the LE and Sonson.  They tend to not tell you a lot of stuff about nutrition, toxins, that kind of thing.  I mean the parabens thing probably hasn’t been tested in a double blind study, but apparently tehre’s enough evidence that it should be avoided.  I recommend Anticancer-A Way of Life – talks about a lot of that kind of thing and is very readable.

Lifeonittsside, SHIT!  That’s really scary.  I’m glad the CT scan came out negative – is there anything else it could be?  Sounds like your MO is really cautious so that’s good.  I hope he’s just overly cautious and it’s something else.  But here’s the thing – if you just went through chemo and this really is some baby cancer popping up – is there some way they can figure out if whatever you had/have is/was more responsive to a different chemo regimen?  I find this very alarming.  I hope he’s wrong!!!

Outdamnedspot

Had 4/16 today and for the second time had to be xrayed during set-up twice today and then a check at half time. Wonder what's up with that? I got them to turn the heat up as I couldn't relax it was so cold in the Tx room. Maybe that will help.



Tech said our body is always changing. I never moved even a millimetre either as I don't want to hold anyone up. This is the third day I have had to wait an hour past tx time. Oh well, they're doing there best and there are so many patients.



Cheers to a great day tomorrow and no skin issues.

short6

Looks like several of us are starting close together.

Sonson. Tomorrow is number 1 for both of us.

So my instructions say to use a mild soap to bathe with like Aveeno. Is anyone else using this, or is there another that would be better?

Also, i am hooked on using coconut oil to moisturize all over. Anyone loob with it?

cowpower

Welcome Doxie and Bookworm, hope you have minimal ses.



Short6, I have been told to use only Dove unscented soap, no reaction to it so far. I never used it before, but I actually like it.



Loneskier, glad it went ok. Now you get to do it all over again Boring routine will set in, but after this year, I LOVE BORING!



Ooudamnedspot, you are already a quarter of the way there! I get xrays a lot, at least one time a week, then they measure for body changes due to swelling, etc. Nice variety to throw in there once in a while.....Keep that skin lubed!



Lifeonitsside, I hope you can stay somewhat sane until you see the doc. Will be thinking of you.



Hang in there sisters!

Lifeonitsside

Thanks, you guys, for all the good thoughts. I'll know more on Wed but with the research I've done, I think he's probably right. I plan to ask about other testing and other treatment. I was just to shell-shocked today to actually coherently ask questions. I'm preparing a list. I will let you know it goes.

allurbaddayswillend

LifeOnItsSide, so sorry you have this kind of concern going on after everything you've already been through. It also sounds to me like your RO is being very cautious and thoughtful. Still keeping you in my thoughts.

fhny2012

Lifeonitsside, I am so sorry you are going through this.  I am sending you lots of positive karma and we're all thinking of you! 

Yesterday was 11/25.  Quite pink, quite itchy, but energy levels seem to be okay - I'm working out everyday which I think is helping.  I've tried the Calendula from Boiron, but it actually seems to make me redder...has that happened to anyone?  I'm doing better with Biafine.

Wishing everyone a good day! 

sonson

Lifeonitsside-thinking of you and hoping for the best.  I'm so sorry you are having to go through this.  I'm so hoping your RO is just being overly cautious.  I'm also hoping the CT scan is right and the RO is wrong....so so hoping.

Here's to all of us just starting out!  1 down and many more to go!  May it be an easy ride for us all!

Doxie-I hope you get to stick to the 16 only that would be sweet!  And it would be nice if the doctors would communicate with each other...you'd think that they would.  And here I was thinking that they did.  What a reality check!  I was greeted in the ladies waiting room today by a bunch of women who knew I was a newbie.  They were nice.  I guess when you go every day and have been for weeks you start to know some of the other ladies.  I guess we'll get to that point!  My appointments will be around 1 pm most days.

aliyahgirl-I got me an appointment tomorrow with a lymphedema specialist.  They measured my arm today and it was 1.5 cm larger than the other one which seemed large enough to make the nurse concerned.  So I have an appointment tomorrow and then next week I have an appointment with the PT so I get to see both.

cypher-first day of rads was alright.  The machine has teeth in it that move back and forth...it reminded me of that movie Alien.  Not sure why, but it did.

fgm

I had #4 this morning and met with the RO.  She told me that since I'm large busted I will probably get a blister under my breast from the radiation. Can't wait .   Has anyone experienced blisters?

Thanks

Dianarose

Question- I started rads last week which was a little over 3 weeks since chemo. After just 4 rounds I was knocked on my ass. I was so tired on Friday which triggered an occular migraine on Saturday. My doctor doesn't want me to work more than 30 hours a week from now on. I can't afford to do that. Has anyone else experienced the fatigue so soon into it? I get 5 different rays from 4 different angles. I know this is more than what I had 8 yrs ago on the other breast. I still have 22 to go and don't know how I can do it and work at the same time. I am ready for a nap by 10 in the morning.

I am using emu oil at night on the radiated area. Is anyone else using this?

fhny2012

Hi ladies,

Does anyone know if we can drink green tea while on rads?  I know my onc said not to drink it during chemo but I can't remember anything about rads...  Am trying to up my exercise and eat healthier, so thinking about the green tea aspect as well!

heidismom

I've been drinking it, never given any precautions regarding food or drink. I didn't have chemo, so have never even heard this before.

momtopiglet

Diana-

I didn't get fatigued quite that quickly; it was around 2 1/2 to 3 weeks in, I think.  I'm pretty tired by the afternoon.  Sometimes I compensate by guzzling caffeine (normally I don't drink anything with caffeine in it).  My mom had radiation last year and her doctor actually prescribed stimulant meds (ritalin, in fact), which helped her.  I haven't felt quite that desparate yet, but it's something to think about.

fhny- I don't know about green tea, but I would think it would be okay? 

Right now I'm trying to relax with the four kiddos and watching some Christmas DVD's with them!  They have been literaly BEGGING me to sit down with them to watch movies, so I figured since I need some couch time anyhow....kinda reminds me of the days when I had little babies and toddlers.  

terrikoala

fgm, I too am large busted and had nothing under the breast at all from the Rads. I look all the time and the doc checks once a week.  Only place thats red/ really irritated/hurts and looks awful from the radiation burn is above the breast on the thin chest skin. Thank God I am DONE as of this afternoon and now hopefully this will heal.

Good luck

Terri

Lily55

I am damaged by rads quite badly but have been using the SEVEN cream and in 2 weeks I notice the difference and so does my physio so its worth a try - its all natural

cowpower

My RO said no restrictions on food/drink. I just switched to green tea after chemo. Never thought it would be a problem.......

cowpower

Terikoala, Congratulations! I can't imagine being finished. Must feel great. It's a huge accomplishment, to be sure.



Sonson, the machine teeth remind me of Pacman. Today one of them needed servicing and was squeaky. The techs told me they need changing fairly often.



Fgm, you may not have the trouble you expect with your skin. Mine is always so reactive that I consulted a dermatologist before I started rads So far, after 22 treatments I have only some redness, no blisters or open areas. I dont have a breast on that side, but do have some deep folds and scarring in my armpit that have stayed intact. Hopefully you will be as lucky.

0000

Today was day 2 of 16...so far so good. Now about that sticky gooo they gave me...I have a neighbor who is now very well known and educated about radiation creams. I ws referred to her by the NP in my BS office. However, I already knew about her. Her name is Andree Terry and is a BC survivor herself. Today I met 2 ladies who had been using her products and they have NO radiation burns or skin irritation. So I went to her store and bought a tube of her Light Cream Botanical Gel. Here is her website: http://essentialsoapsinc.com  Roam around and read about how she formulated her products. If you use her search option, put in "radiation" and it will show you specific products. I have met several women who swear by her products. here in Athens, home of University of Georgia, two coaches wives are cancer survivors and used these products during their treatment. One tube of the gel will last a long time...long after treatment. I will keep you posted on my progress. But so far so good

~Jenifer

Andrea623

DONE!!! *tears off shirt and throws it in the air in celebration* And not a moment too soon. I look and feel like a boiled lobster! 

Lifeonitsside

Andrea623 - Yay!

cowpower

Andrea, Doing Happy Dance in the Catskill mountains of New York State! Congratulations! I cant believe I only have 10 more myself.

allurbaddayswillend

Terrikoala, Andrea 623, Congratulations!

I drink lots of green tea. I asked my RO about it and he gave me no dietary restrictions except to avoid megavitamin/mineral supplements. He even said that I could take a normal one-a-day type if I wanted but I am doing ok eating well.

5 of 30 done today, only a little nip tenderness still...

Sue2690

Lifeonitsside – still thinking of you and sending good vibes your way.  I’m glad our onc is on top of things, rather than “wait and see”

terrikoala & andrea623 – yay!  Yesterday was half way for me (14/28) and I can’t wait to be done.

lily55 – I have the SEVEN cream as well, although I don’t use it every day.  I’ve been using Glaxalbase –TONS of it!  For anyone else, the SEVEN cream has organic Manuka honey, calendula, aloe vera, shea butter, coconut, avocado, neem and manuka oils.  It’s more expensive that the Glaxalbase, but has lots of healing ingredients.

I’m not having bra issues – not large breasted, and I have a tissue expander in on rads side and it’s so very “perky” that there’s no rubbing underneath – but when I was shopping for a bra (to boost the other one!) the salesclerk said nursing bras have much more support than regular bras, without wires.  Maybe that’s an option for some of you?

And on the green tea – I take a whole lot of supplements, including 2 cups of Macha green tea (yuck) and green tea extract capsules every day.  I started to the my RO what I take in case there was something she wanted me to stop, and she got a very solomn face and said “I prefer not to discuss non-evidence-based treatments.”  And that was that!  I had listed all my stuff on an intake form, so hopefully she read over it…

Halfway done!

Sue

ZaharaTheWarrior

Hello!

I'm new to posting here- but I've been cruising the posts off and on for a month or so. Finally plucking up the courage to actually reach out and make some friends.

This seems like a good place to start. I had 2/20 today. Am I'm already experiencing symptoms...irritated skin, change in tissue, diarrhoea, (?) - nurse said I must be very sensitive...not a good start eh?

I was advised to put only water based cream- given to me by the hospital...ironically it has more junk it in than I would ever put on my skin. I use coconut oil for everything...but the idea of oil doesn't make any sense when you think of the "burning" that is happening to the skin...

I wish all of you the best and send vibes of goodness and light...thanks for the posts.

fgm

Thanks for the advise everyone.  My RO wants me to use Miaderm so that's what I'm using. So far I'm just a little pink.

Terrikoala and Andrea623-Congratulations!!! It must be a wonderful feeling.