Summer Rads 2014

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  • Amelia123
    Amelia123 Member Posts: 96
    edited July 2014

    This is the first confirmation of Amy Robach using a cold cap.  Thanks, aff.  I wonder why they don't make that available to everyone.  Probably cost.  But I've also heard that MOs don't like them because they might keep the chemo from killing cells in that area.

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  • Macintx
    Macintx Member Posts: 118
    edited July 2014

    Amelia123, they also say that the cold caps are not as effective with the ACT regimen, so you might have been doing it all for nothing if you tried.   But, I don't think Amy Robach used them.  She had the CMF chemo regimen, and I don't think you necessarily lose your hair with that one. 

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  • aff
    aff Member Posts: 279
    edited July 2014

    Amelia - My MO discouraged the use of cold caps for the same reason. I had AC followed by T. I should have said I think Amy Robach used a cold cap. She had chemo around the same time I did. I remember during one of my infusions my sister and I were watching GMA and discussing how amazing she looked. My sister looked up her treatment as we were watching the show and found something stating that she was using a cold cap. I never read the story myself but my sister did read it to me that day. That was back in January so I have no idea what the source was.  Definitely not a confirmation :)

    Macintx - you are right that total hair loss is not always the case with CMF

    Anyway...hope everyone is well. Sending positive thoughts for healthy skin!

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    Thanks, Amelia, Louanne and Crazywabbit, I used the cortizone 1% and it was gone this morning. I did mention it to the nurse and she said use the cortizone if it happens again, but so far so good. Having a much better day.                              Dee, my RO sent me to a nutritionist and she said, not to take any multivitamins and no A,C or E, but it's fine to get these vitamins from food and to take calcium with D. She also said plenty of protein and lots of fruits vegetables and whole grain as they will help with the healing. I am trying to get 70 grams of protein a day, but it goes by weight so check with your doc. Don't forget to drink lots of water it helps the skin heal. Also important not to lose or gain more then 5lbs. because they might have to redo your tattoos.        

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  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Rosie, I hope your treatments are going OK now. It does sound like
    they made a big adjustment so hopefully things will go better for the
    remaining sessions.

    Stephanie, I am glad the 1% is helping!

    the anti-oxident question does add even more confusion as if things weren't confusing already. Have been trying to get
    plenty of natural protein and veggies but probably not enough so did finally
    resort to V8 low sodium and some Ensure before exercise  even though the vitamin A in the V8 is probably a bit high.  Even some of the veggies are high in
    antioxidents. We eat quite a lot of broccili and I ate so much spinach I
    got all gassy and bloated LOL. Then I find its full of anti oxidants so
    is it good or not. I don't really know.  We just
    try to eat a reasonable diet, never eat fried food, very little red
    meat, only wholewheat bread, lean turkey,mainly almond milk and very little
    sugar (except a bit of candy) and very little alchohol..DH likes spagetti and meatballs but uses turkey and whole wheat pasta as he is diabetic.

    Since
    Tuesday I have gotten quite a bit redder so wondering if its just the
    normal course of rads or if there is something in the Ensure that is
    aggravating it.Will give it a miss for a couple of days. Still I can't complain, only 6 more and then 5 boosts.It looks no worse than a moderate sunburn so far, a bit tender but no real itching. Looking forward to the weekend to give it a break. 

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    Issysmom, my doc said don't do supplements so I don't know about the ensure, I think it has lots of vitamins, you might ask about that. He said if you like orange juice, drink it, it does have lots of Vitamin C so Don't drink a gallon. If you like carrots eat them, but don't eat a bushel. So I guess it's all okay in moderation. The issue, I was told is that antioxidants are good for the body, but they can also protect the cancer cells that we are trying to kill, so I am eating a variety of veggies, but less of the really colorful ones that have the most antioxidants. What an education, we are getting that we never wanted. hope your skin holds up and the next treatments go by fast for you. Stephanie

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  • Sam2U
    Sam2U Member Posts: 233
    edited July 2014

    Off-topic on the Amy Robach/Cold Cap thing--she posted pictures when she was receiving the chemo counting the number of treatments.  She got 8 rounds of something.  She was getting the infusion through her arm with no cold cap--so if she was using cold caps, she wasn't doing it per the recommendations I saw, but who knows.  

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    Regarding supplements, the guideline is not to exceed the daily US recommended allowances.     

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  • rettemich
    rettemich Member Posts: 369
    edited July 2014

    Izzy, it could be normal for you. Just slather on the aloe several times a day. It usually helps with the redness.

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  • Ktjay
    Ktjay Member Posts: 64
    edited July 2014

    Hi ladies,

    Not sure if I am at the right place, but my friend aff said to check it out.  I am making a decision to do radiation or not, I sure could use some wise advise.  I had ILC, stage IIB, 1 node involvement (macrometastasis), grade I.  I have had a bilateral mastectomy, 16 nodes removed, 1/16 positive, 2 mm clean margins, original mass was 2.9 cm, reconstruction surgery (permanent implants).  I also had my tubes and ovaries removed.  I just finished 5 rounds of taxotere and Cytoxan. Now I am posed with having to do radiation (which I was told in the beginning I would not have to do), but I am borderline for their statistics so it is my decision.  I would appreciate your thoughts.  The side effects and long-term effects sound so risky to me for being borderline.  Were any of you faced with this decision? 

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  • vettegirl
    vettegirl Member Posts: 235
    edited July 2014

    Just checking in-glad to hear most are doing well.  I am at number 4 of 33 today...lay on my back, getting both boobs done so taking about 25 minutes.  My arms are aching me so bad-have a rip in my right rotary cup.  Taking a muscle relaxer before I go each day.  That is my biggest complaint so far.  Really tired but working full time and its been a crazy busy week.

    Last week I was on vacation at the beach.  Had bad swelling in both feet almost the whole time.  So bad that I could only wear my worn out sandals.  Seems to be a little better this week.  Not sure what that was about....

    So-one of the gals I did chemo with is also doing rads now.  She left me two cards this week w the rads techs to support me, so sweet of her.  As we have all stated-nobody but those going thru this truly understand all that we are going thru. 

    I asked my techs if my heart and lungs are safe with the rads.  She said my heart is not getting hit, but my lungs are getting some zapping-that really scares me.  See the RO Monday and will discuss....

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  • aff
    aff Member Posts: 279
    edited July 2014

    Ktjay - glad you could join us here. Based on my original pre-chemo tumor size I did not have the option not to radiate (well...there's always the option but I was not willing to take that chance). There are amazing ladies with way more knowledge than I on this thread. I'm sure they will soon share some of their wisdom with you.

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    KtJay-  This is the analogy that I was given for Rads:    When you have raw chicken on the counter, to clean up, you remove the chicken and wipe off the counter.  Its not REALLY clean until you clean the counter with Lysol. (Rads)

    Statistically, I was told I reduced my reoccurrence rate in that area from 40% to 10% by having radiation. 

    Bottom line, talk to your doctor about stats or get an opinion from another MO.  

    Personally, I would make the decision on to Rad or not based on MO recommendations and the stats to support it. 

    There will we SE's, but I think they are all way more manageable than a reoccurrence. 

    Best wishes, these are all very difficult decisions!!

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited July 2014

    image

    Ok my totally rad girls! I'm done! I posted this on the December chemo forum  so some of you may have seen it already but I'm SO DAMN HAPPY that I'm going to post it in as many places as possible lol! Here is my Facebook page post today. I feel great! They played the song Free (Donavan frankenreiter) through the speakers during treatment, which I requested (find it on YouTube or I posted it on my fb page recently) and then the graduation song, lol!. (See my fb page for more pictures) www.facebook.com/lisa.r.boyce. 

    NO MORE CANCER!

    My Breast cancer journey started 9 months ago on 10/18/13 and as of 7/25/14 I can now say my cancer is GONE! (and my doctors agree!) It has been cut out, poisoned, and radiated to smithereens! It is a journey that I never ever thought I’d go on.In some of the books I’ve read on breast cancer, some women would say that breast cancer was a blessing or that they were thankful for having breast cancer. Well I can’t bring myself to say those words but I now see how it has changed me, and in many ways for the better.

    You know the quote that says, “You never know how strong you are, until being strong is the only choice you have” well, I get it now. From day one I knew the fight was on and my strength and courage emerged and became stronger as each day, week and month progressed. This has been the most challenging journey of my life, physically, mentally, emotionally and spiritually. But I have made it through and I am proud of myself and I am stronger and maybe even a better person for it.

    I want to share some of the things I have learned, some of them are serious, some are funny but all of them are all part of my life now and part of what I have been through.

    I have learned:

    How important it is… to… just… breathe…

    How music really does help you feel… and heal

    That blue sky, green grass, flowers, clouds, soft rain and strong storms are really beautiful

    How beautiful the beach REALLY is

    How wonderful salt water air smells and that icy cold ocean water feels great

    How amazing warm sand feels between your toes

    How important nose hairs really are (you’ll never realize until you’ve don’t have them!)

    That eyelashes really do keep the dust out…as well as make your eyes look good

    That there are so many ways to tie a head scarf

    How difficult it is to draw on eyebrows

    That I do look OK with really, really short hair

    That really, really short hair is still better than NO hair at all

    That white/gray hair is also better than no hair at all

    How nice it is to have a husband that says he likes this look with my new short “hairstyle”

    How great it is to have a husband that will do anything for you

    How great it is to be surrounded by a loving family when it is really needed

    How wonderful it is to have sisters

    How great it is to have friends that make you laugh

    How good water tastes…when it tastes the way it should

    How good food tastes…all food

    That just putting your feet on the ground in the morning is a really big step

    How great it is to just take a walk

    That running 3 miles is not nearly as big of a challenge as it used to be

    The benefits of one handed techniques and front closure shirts (thanks to my OT

    background)

    That having normal ROM in your arm is really important and how to regain it (thanks also

    to my OT background)

    That great friendships can be made with women all over the country that you have never

    even met and how those women can help you through tough times because they “get it”

    That nurses are the backbone of any medical office

    How important it is to be your own advocate

    How important it is to be an active part of your treatment

    How it is OK to have people help you

    How important it is to talk about difficult subjects and how it helps to lighten the load

    How a person can turn a difficult situation into a reason for positive change

    I have completed my journey, my story.I have won this fight!I thank everyone that has wished me well, prayed for me, kept me in their thoughts, sent me food, gifts and positivemessages, lifted me up, cried with me, laughed with me, and sometimes pulled me along when I didn’t want to go. You are also part of this journey and I thank you from the bottom of my heart. Now on to surviving and thriving!

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    lisaj514....first I smiled at your pix...then I cried at your post!  It's all so true and I am so happy you are done!!  I will end august 13...it's been a ride alright!  

    So very happy for you...I will never say I am happy to have had breast cancer cause it blessed me....I do say I have seen many blessings over these months and they are what you posted...and those nose hairs....damn straight they are important!!! Best of luck and love to you...Rosie 

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  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    congrats Lisa, what a great post !!

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  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Congrats Lisa, I loved the post, so inspirational!! You look fabulous too!!

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  • Louanne
    Louanne Member Posts: 101
    edited July 2014

    Lisaj514, Congratulations!!! Was thinking about your last treatment this morning. LOVE the pictures, you look wonderful. Your thoughts on what you have learned on this journey are beautiful! Thanks so much for writing them down.  

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited July 2014

    thank you, thank you, thank you everyone on your comments about my post. It took me a long time to write it but once I started writing what I've learned it kind of flowed (and now I've come up with even more things!) it was very therapeutic as well. Looking forward to hearing of all your last days as well. We are kicking butt girls!

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  • ohiofan
    ohiofan Member Posts: 206
    edited July 2014


    Wonderful, Lisa!!

     

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  • Amelia123
    Amelia123 Member Posts: 96
    edited July 2014

    Oh Lisa, what a beautiful post.  Thanks for sharing, and best to you!

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  • Amelia123
    Amelia123 Member Posts: 96
    edited July 2014

    Ktjay, while our cancer backgrounds are somewhat similar, I was not given a choice in radiation.  The way the RO explained it was the surgeons and chemo brought the ball to the 1 yard line.  He's just carrying it over the end zone.  I'm happy (if that's the right word) to have rads and hopefully this means no possibility of recurrence.  I suggest you get a few more professional opinions, and I believe listening to your gut will also help you decide.  

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    ktjay...I like what jbokland wrote..good insight....those positive nodes is what is scary...stats and MO opinion...good luck dear! Rosie 

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  • trying2staypositive7
    trying2staypositive7 Member Posts: 96
    edited July 2014

    Hi! I'm new posting to this thread but if I'm being honest I've beem lurking for the past couple of weeks. I'm halfway through my 28 sessions of radiation. I just wanted to thank everyone for their posts. Reading them has helped me navigate this whole radiation maze! I've been pretty blessed so far with my skin, just hope it holds up since i still have 14 more to go! Thanks for letting me join.

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  • Ktjay
    Ktjay Member Posts: 64
    edited July 2014

    Thanks Amelia123, that is a great way of putting it.  I have talked to so many people who have done the radiation and I am leaning towards it, even though I am afraid of the side effects and the chance of cancer down the road.  I see that you have permanent breast implants as well, how did they fair with the rads?  Did you have 33 treatments? 

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  • Amelia123
    Amelia123 Member Posts: 96
    edited July 2014

    Ktjay, I am at #12 of 33.  So far I have no side effects, and my rads crew is just wonderful.  It's a much better experience (at least so far, and am hoping it stays that way) than chemo was. 

    trying2stay, I wish you continued success with your rads.  I'm only a couple of days behind you!

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  • trying2staypositive7
    trying2staypositive7 Member Posts: 96
    edited July 2014

    Thanks Amelia123! Hopefully we all get out of rads with minimal skin issues! I'm glad that you're right behind me. That way we can drag each other over the finish line! 

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    trying2stay- you and I have very similar DX and dates!

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  • aff
    aff Member Posts: 279
    edited July 2014

    12 of 28 for me too. There are quite a few of us that started the same week. We'll all be cheering each other on as the finish line draws near. No SE for me so far. My energy level has been great. I'm walking at least 3 miles every day and have been able to keep up with my two kids (12 and 11) with no problem. 

    I'm out of work right now so we're having a great time. I've never had a summer off with them. My husband is a teacher so we are doing everything together as a family. It's weird to say, but I am so thankful for this time with them.

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    my Rads team....caring and fabulous and handsome!!!

    image

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