Summer 2013 Rads

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  • AnnieLane
    AnnieLane Member Posts: 856
    edited June 2013

    CMBernardi, I am still taking the B12, B6 and Alpha-Lipoic Acid my MO recommended for nerve pain during chemo. I understand some people also experience nerve pain in the breast and surrounding area during rads, so figured I'd take the B vitamins until I run out. My MO recommended the Alpha-Lipoic Acid longterm.

    And TMM60, I know how hard it is to quit smoking from living through it with my DH! Congrats to you! Better late than never!

  • melody46
    melody46 Member Posts: 279
    edited June 2013

    raspberry did they tell you your lungs were going to be scarred?

    TMM60 they told me they would avoid the heart and only a possibility of the upper lung might be affected.  I'm also left side, I'm pretty sure they do everything to minimize exposure where its not needed.  Congratulations on the smoking.  I smoked for years and am more worried about that than rads also. 

  • raspberry
    raspberry Member Posts: 48
    edited June 2013

    Hi Melody - yes, the RO's words were "you are pretty much guaranteed lung scarring"

    I have cancelled my mapping. I found a mistake on my histology report which has upped my risk artificially, as in the Nottingham Prognostic score, someone added an extra digit to it (.32 +1 +1=3.32), so putting me in the moderate risk range when my real score is 2.32 and the radiologist is basing the treatment at least in part on this? 

    I can't even get hold of anyone, so left a message to say I won't be at my appointment. I'm not going thru with it until this has been looked at.

  • Heart2930
    Heart2930 Member Posts: 139
    edited June 2013

    Congrats on the quitting smoking TMM60!!!! I have also quit, but with all the stress associated with the whole cancer process I do admit to occassionally falling of the wagon.

    I also look at the radiation as the lesser of the evils. I am having left side radiation, but using the breath hold technique. My heart is somewhat in the field (like 1% of so). I do worry about my lungs. But after my surgery I still have positive margins, so if I don't do radiation my cancer will most probably come back since there is still some there. I look at the tamoxifen the same way. Radiation lowers my risk of recurrence 50%. Tamoxifen takes it down another 40%. This is the only way to get my risk into a reasonable range.

  • TMM60
    TMM60 Member Posts: 190
    edited June 2013

    Rasberry, I'm not sure the hearing I would be "guaranteed lung scarring" would sit well with me either. Had you considered a second RO opinion? Good for you for calling a time out until all of your questions are answered.

    Heart2930, occasional falling off the wagon is totally understandable! My husband continues to smoke and its a real temptation for me. I have taken a puff or two off of his, but it tastes bad to me now and I craving it less as the time goes by. It got some sugar-free LifeSavers mints and candy to suck on when my oral fixation sets in.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Well, tomorrow is the big day - first day of RADS.  I am getting a little scared.  Feel like a kid when I had to go to the Doctor.  Shaking inside!

  • Heart2930
    Heart2930 Member Posts: 139
    edited June 2013

    Good Luck cmbernardi! The treatments are really not as bad as I envisioned.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Heart2930 - Thanks!

  • melody46
    melody46 Member Posts: 279
    edited June 2013

    cmbernardi I was pretty nervous too but it goes by so fast I'm used to it now. Its getting over the hump of the unknown and now its easy.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Cool Melody.  Thanks.  Your words of advice and those of others will help me save my Xanax for when I really need it!

    CB

  • ChickaD
    ChickaD Member Posts: 1,025
    edited June 2013

    Miss Flowers -- good luck tomorrow -- I know I am also dreading the rads -- they won't start until July for me -- but I getting the shaking thing -- already worried about it -- guess I'll just focus on the chemo for now -- LOL

  • caitlin61
    caitlin61 Member Posts: 214
    edited June 2013

    Cmbernardi, first day for me tomorrow too. Haven't had much time to think about it, but when I do I feel apprehensive. Guess the RO will tell me what the final plan is tomorrow, and let me know whether there are any issues with my heart/lungs being in the field (that's the part that's concerning me). Also feeling pretty tired going into it (almost 3 weeks PFC) so hope it doesn't get much worse.

  • AnnieLane
    AnnieLane Member Posts: 856
    edited June 2013

    Had my second rad treatment today. So far so good. I have several friends who've been through rads for bc and have been doing just fine for years afterwards. I guess I was more concerned about the risks from chemo.

  • btdemo
    btdemo Member Posts: 52
    edited June 2013

    Had planning and mapping with RO today.  Took an Atavan, that helped.  I asked my list of questions and got thorough answers.  Feeling better about the process of rads.  Came home and slept 4 hours!  Emotionally and physically exhausted, still feeling the effects of last week's final chemo. RO said I might be eligible for 3.5 week rad study.  Unfortunately, they need a clear tumor bed as shown on CAT scan.  I have dense breasts so no clear pic of tumor bed.  (sorry if this is too graphic).  So I will start daily rads on 6/17 and will have 25 sessions with additional 8 boosts.  Will take 6.5 weeks.  From some of the info on this thread the 6.5 weeks seems customary.

    Thank you all for you kind words of support and comfort. 

    Good vibrations to all!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    I get the results of my MRI & bone scan today. They were done to rule out mets to the left shoulder where we really believe there is just arthritis. I finished chemo on May 17, so I really want to get the ball rolling here and get on with rads.



    My question: How long does it take or how many appointments to get the mapping, tattoos, and so forth before you start radiation. I know all doctors are different, but is there an average amount of visits before starting?



    Blessings

    Paula

  • caitlin61
    caitlin61 Member Posts: 214
    edited June 2013

    Soteria, I had mapping/tattoos last week (one session). Supposed to have treatment plan discussion, additional checking, x-rays (think that's what they said) and first treatment today.

  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Despite my attempt to bribe my doctors to skip it, I will be joining you ladies.  Meeting with the radiation oncologist on Friday to get the ball rolling.  My incisions are healing nicely from my surgery, and I told them I will be done with this crap by July 26 so I can finally take a vacation (diagnosed two days before xmas and couldn't go see my family, missed spring break to visit friends, and will miss 4th of july to visit family).  My last chance to visit family and friends before my son goes back to school. 

  • AnnieLane
    AnnieLane Member Posts: 856
    edited June 2013

    Soteria205, I had my first rad treatment exactly 2 weeks after my initial consultation with the RO. There were two appointments in between: one for a CT scan and mapping, another for the simulation/validation. Things might have moved a little quicker if Memorial Day hadn't been in that 2 week time frame.

  • TMM60
    TMM60 Member Posts: 190
    edited June 2013

    Paula, I'm hoping and praying for the best possible news for you today.

    The way the preliminary rad appointments went for me was:

    Initial consultation appt-

    Simulation appt-  then one week until

    Dry run to make sure everything is set up correctly-   then next day

    First Rad treatment

  • Heart2930
    Heart2930 Member Posts: 139
    edited June 2013

    Soteria205- I had one 1.5 hour long initial consult with my RO. 1 appointment for Cat scan mapping and tattoos. 1 week later I started treatment.

    Welcome to everyone new who has joined! Hope your journey goes smoothly.

  • ChickaD
    ChickaD Member Posts: 1,025
    edited June 2013

    Miss Paula -- I am so praying that you receive good news !!!!!

  • Lin43
    Lin43 Member Posts: 108
    edited June 2013

    Welcome to everyone who is new to the summer rads board. Smile Heck of a time to be doing this with the heat and all, but each day we move forward is a day closer to returning to normalcy.

    I have discovered a wonderful cooling pad called Frogg Toggs Chilly Pad and sold on Amazon for $13. I am half done with rads and feel a lot of heat, especially several hours after my treatments and in the evenings. I run water over this "chilly pad" and lay it over my chest for relief. My RO says it is fine to use. It doesn't drip and I can even put it under my top while I read or watch TV and only get a little wet. I cut mine to fit over my chest better. It is 33 inches long so could probably be wrapped around a "girl" for ladies who haven't had a mastectomy. I think it is meant to go around someone's neck when they are outdoors in the heat or playing sports or running. I am going to order more of them for a trip I am planning to the Western Caribbean and Central America in December. That trip will celebrate my completion of  15 months of treatment and I can't wait to go!

    I have also been apprehensive about rads but the staff is so warm and understanding and here I am half done, finally knowing in my heart that I can do this. I imagine an angel wrapping her wings around me during the zaps and I sometimes bring my own music to play during my sessions. The only problem is that it can be hard to hold still when a song I really like is playing. Ha! I get bolus every day so some of my skin is a bit red, I am feeling fatigue come on--especially later in the day, and I have about a two inch area of itchy radiation rash, but I made it through chemo and the red devil so I WILL make it through this and so will everyone here! Did any of us realize what warriors we would have to be to fight this beast?!?! 

    Idesim--After today we are 1/2 way there! Yay-yay-yay-yay!!!!

    And today is my daughter's 25th birthday. She has been a Godsend throughout my bc: adjusting her work schedule to take me to treatments, buying me a flower every Tuesday when I have my Herceptin infusion, preparing food when I've felt icky etc. My husband works 45 miles away so he cannot always be there! My hope is that everyone has people in their life who step up to the plate. Reach out to local friends and family and to people on this board. We are all in this together.

    Hugs to all

    Linda -- after today 15/30

  • ldesim
    ldesim Member Posts: 1,333
    edited June 2013

    HALFWAY POINT.... woooohoooo!!!!  Big hugs Lin43!!!!  I'm so glad you have your daughter there for you, she sounds wonderful :)  I have the problem with holding still when a good song comes on, they always have music playing in the room during treatment and sometimes I just forget LOL

    I'm doing great so far, I'm tired towards the end of the day, but my job is demanding as well, so i could be a combination of things.  I have a little redness, but nothing too bad.. so far so good.

    Welcome to the new faces, you're all going to do just fine!! Like any of the stages of this horrible journey, its the unknown that gets us so worked up!!  We can be our own worst enemies, or at least I know I can be.  

    Soteria, I hope you got good news with your results!  I had consultation, tattoos & xrays in 1 visit a couple of weeks before treatment started and then a "run through" the day before treatment started.  The first visit was under 2 hours and the run through was about 1/2 hour.




  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Lin, there are a bunch of those listed at amazon.  Can you link what you are using?  I've never been good with burns, and I want everything I can have on hand to handle this when it starts.

  • encyclias
    encyclias Member Posts: 302
    edited June 2013

    Wooohoooo!   Finally, I get my mapping tomorrow and start rads on Monday.  I have had such long waits between various phases of my cancer treatment that I have become almost paranoid that the doctors are allowing any mets to get a free ticket to ride --- especially since I am triple-negative.  I just want to get this over with before the summer ends.

    Wishing everyone a great outcome with a minimum of discomfort or complications.

  • Lin43
    Lin43 Member Posts: 108
    edited June 2013

    GoWithTheFlow--Here is a link to my coolpad: http://www.amazon.com/gp/product/B003YF7W22/ref=oh_details_o06_s00_i02?ie=UTF8&psc=1

    I hope it helps if your radiation area heats up...or just to cool down this summer. Best $13 I've spent!

    Linda 15/30

  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    TY Lin.  I ordered it in lime green.  $10.99 and free shipping!

  • ChickaD
    ChickaD Member Posts: 1,025
    edited June 2013

    I have one of those cool pads at home.... never used it yet, but thanks for the GREAT IDEA !!!!!!  Got mine at Bed Bath and Beyond last summer for my hubby, but no one has used it yet.

    Still nervous about rads.... can anyone tell me what the tatoos look like???

  • melody46
    melody46 Member Posts: 279
    edited June 2013

    A tiny blue dot; they put a needle in through some dye they put on your skin. It stung a little but not too bad. Not much bigger than the tip of a needle

  • ChickaD
    ChickaD Member Posts: 1,025
    edited June 2013

    Thanks Miss Melody !

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