MAY 2009 Rads

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    Ouch Ajlive!  I recommend just a t-shirt w/ Aquaphor, or Biafine, or Silvadene.  Just stay "no" to bras and bandaids!

    Congrats on being done ajlive & carolinachick!

    I have to start my tamoxifen, my feet have been dragging on this - - will go take 1st now.

    hugs oxo Cool

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    Oh Bold, Dick Van Dyke was one of my heros of light and laughs when I was growing up - - big crush on him.  Thanks for thanking him :)

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  • Deb-from-Ohio
    Deb-from-Ohio Member Posts: 1,140
    edited July 2009

    I think tomorrow I am going to call my oncologist and ask him what the percentage of a recurrance is if I just do what i have done versus the whole 30 treatments. I only have 6 reg treatments and 5 boosts left and to put simply, I am tired of the whole thing. Went thru chemo, got sick.....went thru surgery, pain...and swelling.........go thru rads more pains with the 3rd degree burns and being burned inside and my breast still is swelled up twice the size of the other..just so sick of being sick, tired and in pain.........if it comes back, will deal with it then............

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    Deb- - I'm sorry you're having a rough time with this last bit.  I got the severe burns too and was pretty miserable at the end.  I had a mastectomy, so didn't have the same issues that you're having to deal with here.  I wanted to stop at the end.  My Rad Onc had me press through, and it was hard, but I am healing up now - - 11 days post Rads. 

    Your plan to have the discussion is good.  This is no cake walk.

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    ajlive - Congrats to you!  Hopefully you celebrated big last night.  It feels great to be done!  I also wanted to rip off my remaining tapes but decided to wait - I think you've convinced me to do just that.  Hopefully you heal very quickly!

    Deb from OH - Hang in there.  I'm curious as to what your onc says about discontinuing treatment.  I know what you mean about being sick of it all.

    Bold - very cool that you got to meet Dick Van Dyke.  I used to love watching him.

    I'd love to get everyone's ideas on the WINS study showing that a very low-fat diet reduced recurrence rates, especially for us triple negative ladies. 

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  • Texas357
    Texas357 Member Posts: 1,552
    edited July 2009

    Deb, I also had 3rd degree burns. That silver cream worked very fast for me, and the pain was gone in a day or two. Hopefully it will be the same for you!!!

    Jess, no plans to go to Vegas but what fun they'll have!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Congrats to ajlive and carolinachick - you have crossed the finish line too!!  One more hurdle down!

    Deb-from-Ohio - oh, I'm so sorry you are having such horrible issues - you've been through the wringer already!!  I hope you get some relief from the meds and creams.  Maybe your rad onc can just move you on to the boosts once you heal up some?

    Debonthelake - my thoughts are with you and your family - and I'm hoping the outcomes are good for them.

    Bold, you are so awesome - you met one of my idols - that is just too cool!!  You live in the fun part of the country, that's for sure!  So, is your new oncologist the homeopath you were talking about?  I would love to find an onc here that thinks outside the box.  I like my doctor, but sometimes I feel like just another cancer patient and my treatment isn't very personalized.

    Well, it's 2 weeks from my last boost, and my skin is coming along okay - some peeling under the arm where it got pretty dark, and the area around the nipple - a very interesting two tone thing going on - pink and dark brown.  Boost redness is still there, but fading and the color from the main tx is fading too.  Only complaint is still breast pain deep in, especially when I lay down and roll over from side to side.  I have to kind of help the breast along, because it hurts so bad.  Still need ambien to sleep because of it.  Otherwise, doing fine - energy levels back to normal.

    Hair is taking it's time, but is making efforts.  I am thinking of starting to go everywhere "topless" maybe next week or week after, it's trying to fill in.

    Have a great day - and rads sisters still getting treatment - you are ALMOST there!!!  Hang in there!!

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  • lisalisa
    lisalisa Member Posts: 824
    edited July 2009

    Congrats to ajlive and carolinachick!  You made it!!! doesn't it feel good!?!?

    I'm on day 3 of tamoxifen and so far, so good!!!!  I went yesterday to get my port flushed and the oncology nurse convinced me to keep my port for zometa infusions.  AmericanPinay - to answer your question, I'm taking zometa by IV every 6 months for 3 years.  I'm doing that b/c it's a bone strengthener and I'll need it after my hysterectomy....with no estrogen in my body, bones can get brittle faster.  I don't need osteoperosis on top of everything else.  Also, in clinical trials, zometa reduced risk of recurrence by 34%!!!!

    This morning, I'm off to be in the audience for the new "Let's Make a Deal".  I'm going with a group from "team survivor" and we'll raise money for cancer by going.  Audiences still dress up....so I'm going as a Hippie LOL!  I'm dragging out my wig, putting on  a scarf.  I hit Target last night and got a tie dye shirt, fringe vest, hobo bag, peace sign necklace, etc.  (it's amaziing how much stuff they had......Target is going retro LOL!)

    I'll try to post a photo on my blog tonight!  or at least on Facebook for those of you who are on Facebook.

    I have been lax about exercise but all my rads burns are healed and I need to get on it!

    Have a great day!!!!

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  • Bold
    Bold Member Posts: 692
    edited July 2009

    Good morning all, To answer the questions about my new med onc.I felt like I got a reprieve from the Governor when I met with her yesterday. What a learned from her that you all should know is that exercise is more important than anything else as far as helping with recurrence is concerned. As for trip neg gals. Eating a well balanced diet keeping you BMI within range and limiting your alcohol consumption, exercising and keeping your stress levels under control in the best that you can do. She can be goggled her name is Joanne Mortimer. The reason that I got such good news is because of the Herceptin. I thank God for it. I personally believe in some supplementation. I take B6 for my residual neropathy. Calcium and Vitamin D. I have been low in D even though I have taken 1200 IU per day. She gave me a prescription for a dense dose to take for a limited time to pull it up. She said that is why I am having pain in my hips and lower back. So D is uber important for calcium absorption. I have requested a magnesium test to see where I stand with that. I also take fish oil, Co Q 10 I eat 2 tablespoons of flax a day (the good kind that has to be kept in the freezer). I will be adding to this list as I finish radiation. I have kept out alot as they are antioxidants and I want my cell to be vulnerable to the radiation. But I pumped up the greens in my diet and lean protein. Well thats it for now.

    Princess aren't you a pharmacist I would love to know your regiment post Rads. We are all entering into the unknown to some extent. I know that we all want to do all we can to live and to have the quality of live that is conducive to happiness and fulfillment. We are all so lucky to have caught cancer at time where treatment is effective. I pray that we have all beat it and will go on to live long lives.

    #7 today 2 reg 5 boosts. I have a little rash and sore nip and internal pain that comes and goes. I think that I might make it. When did all of you grads start to have real problems that required silvadine?

    You all rock!!!!!

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  • americanpinay
    americanpinay Member Posts: 338
    edited July 2009

    Lisalisa...thanks for the info on zometa...dressing up hippie and raising funds for cancer research at the same time sound fabulous!!!

    Deb-from-Ohio...hang in there...I think I know how you feel...I was feeling fine before the biopsies, surgery, chemo and rads...I can't help but think sometimes how these treatments are worse than the BC...two things that made me push through all these treatments...first, hope that all these SEs are temporary...and barely two weeks from last TX, most of them are gone or in case of hair...back Wink...have a co-worker who told me the difference would be night and day after all SEs go away...and secondly, hope that these treatments significantly reduce the chance of recurrence...

    BOLD...my rad onc made me use silvadene before any skin breaks...I think after the 20th rad...I truly believe it helped a lot...

    Be well ladies...Cool

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  • Cruise4life
    Cruise4life Member Posts: 394
    edited July 2009

    Hi RADETTES....

    Sorry I haven't posted...been really busy with my beautiful granddaughter..

    Congrats

    ddlatt LynnVAFacecrafter ajlive carolinachick

    Here is our updated RAD Graduation countdown list....

    I also added HORMONE therapy - let me know what you will be taking when the Rads are done.....

    • kt57 - June 18th ....FINISHED...ARIMIDEX
    • Seagan - June 22nd ...FINISHED
    • Puppers - June 22nd....FINISHED
    • Texas357 - June 23rd....FINISHED...FEMARA/TAMOXIFEN (50/50) 
    • margo1 - June 24th...FINISHED
    • americanpinay - June 25th...FINISHED..TAMOXIFEN
    • Ivorymom - June 25th...FINISHED
    • Princesskaui59 - June 25th...FINISHED..TAMOXIFEN
    • Alohagirl - June 25th...FINISHED..
    • chelev - June 26th...FINISHED..FEMARA
    • KM47 - June 29th..FINISHED.HERCEPTIN/TAMOXIFEN 
    • Cruise4Life - June 30th.....FINISHED..FEMARA
    • lisalisa - June 30th..FINISHED...ZOMETA/TAMOXIFEN
    • Genia - June 30th..FINISHED...TAMOXIFEN/HERCEPTIN
    • barbiedahl - July 2nd..FINISHED.....TAMOXIFEN
    • ddlatt - July 3rd..FINISHED...TRIPLE NEGATIVE
    • LynnVA - July 3rd...FINISHED
    • Facecrafter - July 6th..FINISHED...ARIMIDEX
    • ajlive - July 7th.....FINISHED........FEMARA 
    • carolinachick - July 7th..FINISHED
    • Pringles - July 9th
    • debonthelake - July 13th...TRIPLE NEGATIVE 
    • jrgolomb - July 13th...TAMOXIFEN
    • Bold - July 16th
    • Deb-Ohio - July 20th..ARIMIDEX
    • Snappygoddess - July 30th
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  • Cruise4life
    Cruise4life Member Posts: 394
    edited July 2009

    Deb aka Dolly...You can't stop the rads...I tried when I was really burnt too.  The techs said the rad sessions are like taking an antibiotic...you can't stop you have to finish all of the treatments or it could come back.  They scientifically have figured out how many zaps it takes to cure the cells from coming back...just keep silvadine on the boob and keep it moist it will heal. 

    Sending you EXTRA hugs....Crack

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    lisalisa - How was the show?  It sounds like so much fun!

    Cruise - you can add Triple Negative to your list for me - no additional therapy.

    Chelev - I'm also thinking of getting rid of the bandannas and showing off my new very short 'do.  Let me know when you decide to do it and we can give each other some moral support!  I just don't have the courage to do it quite yet...

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  • Deb-from-Ohio
    Deb-from-Ohio Member Posts: 1,140
    edited July 2009

    I talked to my oncologists nurse, she said it wouldn't raise the chances of it coming back if I were to quit now, but that if it did come back, I would be wondering forever if finishing the rads would have stopped it...so now I still don't know what to do......guess will give these burns a few days more to heal, then see how I feel...........

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  • ajlive
    ajlive Member Posts: 134
    edited July 2009

    Princess:  Thanks for the suggestion.  T-shirt and Aquaphor helped last night.  Couldn't go without the bra today so put on neosporine and band aid.  By the end of the day the bra needed to come off.  Call nurse she said neosporine and band aid fine during the day but to let it air out at night.

    For those that didn't get tattoos let the the tape fall off on it's own.  Loosing a layer of skin is very painful.

    Bold:  My skin held up good through the tx until the last two boost.  Very Red.  Internal pain?  I'm still having problems with the nerves that were cut during surgery.  A sharp pain can sure wake you up in the middle of the night.  I haven't been able to sleep on that side since surgery in April.  Guess it just takes time.

    DebfromOhio: Hang in there you can do it.  Aquaphor really helped me when I stared getting real red.  I think that helped it from getting worse.

    Treatments done now its time to get healthy and exercise and get these extra pounds off.  We can do it! 

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    Well this was boost 2 of 5.  I'm on the last lap now time to gear up for the final sprint.  Deb from Ohio if it's any help the boost are much easier on the skin.  Most of it that is.  Under my arm is already starting to heal.  My nipple sure looks strange though. 

    I'd love to read the WINN study.  I've been following the Strange Cancer prevention diet.  I'm working on getting my BMI to 21 I'm sitting at 22 right now so I'm only a few pounds off.  Being off of work has been great for an hour of exercise each day.  Now to keep it all up when I add work into my schedule next week.  This being my only follow up though is pretty motivating.  I haven't gone completely vegetarian but I eat many more totally vegetarian meals than I used to and often go several days with out meat of any kind.

    Bold that is so neat that you got to talk to and hug Dick Van Dyke.

    The news about my brother is encouraging.  The oncologist thinks his little mass is probably just a cyst.  He will have it removed and biopsied soon.  My sister in-law will start radiation to her small brain tumor next week sometime.  Does anyone on this site know anything about Radiation to the brain, side effects and such?

    Hang in there girls  we can do this.

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    It's so great to see more and more of us cross the finish line!  Yay!

    Bold, My post Rads regimen is just getting started.  I let my diet go when I got the bad burns at the end, but am starting to get my energy back.  I want to move to a plant-based diet; when I eat meat, I want it to be grass-fed organic, organic eggs, etc...  I'm not particularly into supplements just because for me, eating right and getting the exercise is a better place to put my money and focus.  there is a dr. who's really into vegan vegetarian diets: http://www.drmcdougall.com/med_hot_breastcancer.html

    I think I need to move in that direction at least; I know I feel better when I eat cleanly, but I'm a sucker for spaghetti and meatballs and my little boy likes to eat meat.

    oxo  Cool

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    Just looked-up the WINS study (The Women's Intervention Nutrition Study).  It looks pretty good!  They studied post menopausal women with breast cancer for five years (median) and found recurrance in the overall population of 12.4% with standard diet vs. 9.8% with low fat diet.  This is a 2.6% absolute risk reduction which means that for every ~38 or 39 women who go on the low fat diet one recurrance during this median 5-year period would be prevented.  Better benefit that a lot of drugs!  This was the overall benefit and the benefit in women who had had ER- bc was even better.  

    I'm thinking of jump-starting my diet by going for a week to the Optimum Health Institute.  I went for a week after diagnosis and before I started chemotherapy last September.  It's intense but boy did I feel good afterwards, and I lost 10 lbs.  I gained it all back during chemo with the dexamethasone.  

     night :)

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  • lisalisa
    lisalisa Member Posts: 824
    edited July 2009

    Hi my rads friends!

    This evening I put together a video in order to try to win a free photo session, free photos, etc. from a favorite photographer (she is having a contest)  I can't afford her now and really want to win.  If you have a second, will you watch my video (its 4 minutes) and critique it?  I have a week to work on it.  I'd love any constructive criticism!  (oh...some photos are a bit grainy...i need to find the originals, not the reduced ones...working on it!)

    Thank you!

    Lisa

    (note: deleted. i made my changes and submitted it). 

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  • lisalisa
    lisalisa Member Posts: 824
    edited July 2009

    Princess Kauai,

    tell me more about the Optimum Health Institute....I have GOT to drop some weight and get it together.  yikes!  I'm at an all time high for weight....just when I can't be!

    Cost?  website?  location?  thanks!!!

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    The WINS study was encouraging, especially for us triple negative girls.  It doesn't sound very easy to follow, though.  Keeping my fat intake to under 30 - 33 grams per day will be tough, but if it prevents me from having to do this all again it's well worth it.  I guess that will help me lose these extra 15 pounds! Wink

    I'm planning on starting to run again this weekend, and will do the Race for the Cure on October 3.  I'm looking forward to having a decent amount of hair by then!

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Just noticed that Pringles is going to finish today.  A big congratulations!!!  Yippee!!

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  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    congrats pringles!

    i've gone back to my vegetarian diet now that treatment is over. i lost weight on rads, which i needed to do because i ate too many skinny cow ice creams during chemo!!  my ideal weight for my size is 104, and i got up to 121 on chemo. now i'm at 110 and hula hopping every day, running in place on my rebounder for half an hour, and treadmilling at steep incline every morning for half an hour.  i keep remembering that diet and exercise are our new weapons against recurrence. whenever i am too lazy to exercise, i remember sitting in that chemo chair. i don't want to go back. also, i spent 1 hour every day going to radiation and now i just use that same hour a day and exercise. i can't pretend i don't have the time; i had time for treatment. so i'm committed to my hour+/day of exercise.

    i keep my fat intake at 30% and the only protein sources for me are beans (i love tostadas on organic whole wheat tortillas), tofu (because i'm triple negative) with whole wheat pasta or in soup, and peanut butter. i eat a lot of fruit and veggies every day and drink pure pomagranate juice and lots of water during the day. i don't like tea, but i'm trying to learn to love green tea. my favorite healthy snack is raw brocolli stems and cauliflower. i'm not into sweets, have never liked desserts, but i love potato chips, so that's my danger zone. :)  i don't drink any alcohol anymore (i loved wine), but i never did give up my coffee with sugar and almond breeze. 

    i still have my "chemo smoothie" from time to time, everything organic: yogurt, blueberries, flax seed, flax oil, whey protein, l-glutamine, creatine, orange juice.

    i haven't eaten peanut butter in years and years, but i've found that if i have one slice of organic multigrain bread (the artisan bread at trader joe's is fantastic) with peanut butter, i'm not hungry again for many hours. i'll eat a little bit of fruit every hour or so. 

    i agree with princess, i'm not into supplements and take no multivitamins, only Calcium1200/Vit D1000 and B-complex.  

    hope your run is fine, carolinachick!

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  • Genia
    Genia Member Posts: 1,335
    edited July 2009

    Congrats to those that have finished since my last post......VERY proud of us!!!!

    Hope those that have blisters and raw skin heal up quickly....and it DOES heal....eventually.  Remember I had 3rd degree burns twice during RADS.   It does end....even tho it seems it will never end while it's happening.  

    I go for my echo next week...hope it is good so I can continue my Herceptin.  I NEED that drug......so say some prayers if you would.

    Love ya girls.....keep pushing along!!!!!!!!!!

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  • Bold
    Bold Member Posts: 692
    edited July 2009

    Good morning my friends, Thanks for all the input on daily regimens. I have a Lot of work to do. I am not a vegetarian but I shop at whole foods and trader Joe's for organic meats and Alaskan salmon. I have salmon at least once a week. I shop at the farmers market for fruits and veggies from local organic farms. I however have little control when eating out as far as food source is concerned. But I will keep my home food clean eating. I do not want to give up my quality of life. I know that it is very personal to each of us. That being said I am loosing a ton of weight 2 pounds a week. I am the chubbiest I have ever been and in the worst shape. But there is something  cathartic about starting from the bottom and working you way to health and happiness. (ugg) Still getting my plan together I have 1 week before I start with verve.

    CONGRATS!!!!!!! PRINGLE!!!!!!! How you doing???? You did it!!!!

    My last reg today. Start my boost tomorrow!!!! not red just itchy!!!!! My nip is dark. I hope that it eventually is the same color as the left one.

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  • Cruise4life
    Cruise4life Member Posts: 394
    edited July 2009

    Hi Radettes...

    CONGRATS PRINGLES......celebrate !!!!

    Only 5 more ladies to gooooooo.......YIPPEEE!!!!

    Here is our updated RAD Graduation countdown list....

    I also added HORMONE therapy - let me know what you will be taking when the Rads are done.....

    • kt57 - June 18th ....FINISHED...ARIMIDEX
    • Seagan - June 22nd ...FINISHED
    • Puppers - June 22nd....FINISHED
    • Texas357 - June 23rd....FINISHED...FEMARA/TAMOXIFEN (50/50) 
    • margo1 - June 24th...FINISHED
    • americanpinay - June 25th...FINISHED..TAMOXIFEN
    • Ivorymom - June 25th...FINISHED
    • Princesskaui59 - June 25th...FINISHED..TAMOXIFEN
    • Alohagirl - June 25th...FINISHED..
    • chelev - June 26th...FINISHED..FEMARA
    • KM47 - June 29th..FINISHED.HERCEPTIN/TAMOXIFEN 
    • Cruise4Life - June 30th.....FINISHED..FEMARA
    • lisalisa - June 30th..FINISHED...ZOMETA/TAMOXIFEN
    • Genia - June 30th..FINISHED...TAMOXIFEN/HERCEPTIN
    • barbiedahl - July 2nd..FINISHED.....TAMOXIFEN
    • ddlatt - July 3rd..FINISHED...TRIPLE NEGATIVE
    • LynnVA - July 3rd...FINISHED
    • Facecrafter - July 6th..FINISHED...ARIMIDEX
    • ajlive - July 7th.....FINISHED........FEMARA 
    • carolinachick - July 7th..FINISHED...TRIPLE NEGATIVE 
    • Pringles - July 9th....FINISHED
    • debonthelake - July 13th...TRIPLE NEGATIVE 
    • jrgolomb - July 13th...TAMOXIFEN
    • Bold - July 16th
    • Deb-Ohio - July 20th..ARIMIDEX
    • Snappygoddess - July 30th
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  • Cruise4life
    Cruise4life Member Posts: 394
    edited July 2009

    Bold...be thankful you have TWO nipps....

    Deb Ohio..Hang in there Dolly...I am still bleeding and sore from the boost area...its been over a week since I have been done with rads.  It will get better...I promise.

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  • americanpinay
    americanpinay Member Posts: 338
    edited July 2009

    Congrats PRINGLES!!! and thanks to ALL for the wonderful posts on diet and exercise!!!

    DDLATT...I specially liked the one about converting the time for treatment to time for exercise...I should keep that in mind....

    Have a wonderful day ladies!

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  • Texas357
    Texas357 Member Posts: 1,552
    edited July 2009

    Ivorymom: I'm on Femara for a couple of weeks now, and doing okay so far. My fingers and joints get a little stiff but it's completely manageable. I was terrified about starting an AI, so I'm very relieved. I have heard that the SEs may not appear for several months. I'm taking it one day at a time.

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited July 2009

    Congrats to Pringles - - It's all healing now1

    Lisa, OHI is in Austin and in San Diego, I went to the San Diego one last Sept: http://www.optimumhealth.org/optimumhealth/ohisandiego/ohisandiego.htm  

    They have a scholarship program, but I'm not certain of its requriements - - there is a tuition tab on their website.  It's all about raw organic foods, 3 day juice fast the first week and positive thinking/imagry.  Oh yeah, one other v. important point.  They are all about wheat grass juice in every orafice except miss v.  - - I was shy about it last time at first, but by the end I was way into it and feeling better.  It is a "detox/cleanse" program (read not easy), but I felt great afterwards.

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