Summer 2012 RADS HANG OUT

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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Woohoo janie!  Fantastic!

    I went for my mapping appt today - took forever!  I didn't get tatoo's I got blue sharpie and LOTS of it.  Not just little dots, lines up and down boob, chest and underarm - not at all what I expected.  Unless I wear a crew neck shirt I will have some blue showing.  Oh well, I will get over it, and at least it blue!

    I still don't have a start date - they will call me when the model is complete - but I'm still hoping for a start next week! 

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Thanks for the tips gals.  I googled up miaderm and it can be purchased on amazon as well.  Again, Janie, CONGRATS!!!!!

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  • Raelan
    Raelan Member Posts: 200
    edited July 2012

    Finished my last (4th) chemo session on Thursday, so am officially 4 days PFC....YEAH!  Have my mapping scheduled in 2 weeks, then it looks like I'll start rads the week of 8/6.  So, I'll be spending quite a bit of time on these boards over the next 2 months.  Glad to see some familiar faces from the April/May chemo board.... congratulations on making it this far!

     

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Raelan:  Congrats!!!!  Doing the happy dance for you!  

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  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    FANTASTIC JAMIE!!!

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  • slak
    slak Member Posts: 179
    edited July 2012

    Congrats Raelan!

    So my pinkness that turned into a red dot rash was getting progressively worse so I picked up the Miaderm.  After less than 24 hrs of using it (several times over the 24 hr period) this morning the rash looks a little better!  I think this stuff works.  I'll keep you posted.  By the way, its about $24/tube so it isn't cheap, but well worth it to me if it works.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    I have my first rads treatment this afternoon. One of my marks is red with a line of blue dots on either side of it...3/4 of the way across my chest. It's pretty interesting!



    After my treatment I have my first class in the relaxation study that I'm in. Too bad that it probably won't include refreshing adult beverages.



    Phyllis

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  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    Raelan, congrats on finishing your chemo!!!  Yeah for you!

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  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    I met with my RO for the first time today for my consult.  I felt very positive about the appointment and she answered all of my questions and took a lot of time explaining things to me.  I will be having my first rad treatment on Monday, July 23.  Does it sound crazy that I'm actually excited to get started?  I am starting to see a light at the end of the tunnel!

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  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    Tina, I dont think thats crazy at all.  we know we have to do it why not just get it done!  Its killing cancer too- thats a good thing.  Thats how i feel about my upcoming surgery and then rads too!

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  • Dianefightslikeagirl
    Dianefightslikeagirl Member Posts: 51
    edited July 2012

    Hello everyone,

    So many of us are on a similar schedule. I had my last big bad chemo July 6 and finish out my weekly cycle with herceptin this Friday 7/20. I also have my first consult with my RO this Friday as well. Like so many of you, I am anxious to get started so I can get done!



    Now that chemo is done, I am stalking my hair constantly to check for growth.. And I am also now nail obsessed praying my fingernails don't fall off. Right now they are really yucky.

    I look forward to eating to know you all in this group. Stay cool and have a great day!

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  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    wecome Diane, Wish you werent in this situation but here we all are! Congrats on being done with chemo.  from what i hear that means you are done with the worst.  We can do this!

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  • Dianefightslikeagirl
    Dianefightslikeagirl Member Posts: 51
    edited July 2012

    Thank you jpmom!!! :)

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  • CatFromFL
    CatFromFL Member Posts: 105
    edited July 2012

    Hello Everyone! I want to introduce myself as I will be starting Rads  in early August. As I had Rads in 2006 when I had BC of the right breast, I guess I am the ole pro !

    My name is Cat. I am 60 now and had BC in 2006 and again in the other breast in April 2012. Both were IDC Stage 2A, ER+PR+ Her2 neg. I opted for lumpectomies after 2 consults and no difference in the long term surrival stats and mets stats. I also didn't want to lose the sensation and experience the long recovery after reconstruction.

    This time I did opt to get chemo, which ended yesterday ! My chemo saga is quite long. I failed Taxotere due to many side effects after 1 dose, and even after them chenging me to Adriamycin I still had problems. Some were from Neulasta and some were from secondary infections with low WBCs ( despite the Neulasta). But no Neulasta this last round and maybe I will have less pain.

    I will see the Radiation Oncologist again on Friday. I met her already (preop) and was very pleased. The Radiation Center ( a Moffitt Center) is merely 8-10 miles away and will be easy to manage. In 2006 I drove 130 miles round trip everyday and that was tiring.

    On Friday I expect that they will tentatively schedule my Rad Tx and schedule my simulation and tattoos. I still have 3 tattoos from 2006. My MO told me that this Radiation equiptment is less than 6 months old and state of the art so that allayed some anxiety for me.

    I will be using Miaderm cream ( check out www.misderm.com) its had clinical trials to back up its effectiveness. I tried Aquafor and Aloe in 2006 and found neither really helped.

    I also know that California Baby brand (all natural) calendula cream is extremely good for Rad changes to skin from a Nurse Practioner friend who worked with head and neck cancer patients who were prone to the skin damage radiaiton can cause. It is NOT burnt, but the cells are damaged.

    So I will be back as soon as my WBCs are normal I can start my Rads....I expect 2-3 weeks from now- so Beginning of August. I believe I will have 25 normal and 8 boosts or something similar.

    I sure hope the next 2-3 weeks are easy recovering from yesterdays Chemo dose. Then I will be home free.........Rads are cake! At least for me they were in 2006....can't imagine it being any different.

    Be back soon.

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  • GinaB49
    GinaB49 Member Posts: 10
    edited July 2012

    Hi girls,

    I just finished (July 11th) 6 rounds of TAC and am headed for radiation.  I have an eight hour drive to the nearest centre for radiation on Monday, mapping on Tuesday and then back home.  This last chemo has just knocked me off my feet - first time out of bed was today really.  Went in to work for a few hours (self employed) just to let them know I'm still here and to give me a diversion.  How long am I going to feel this tired? Also have quite a lot of back and hip pain. Just can't even think abou the drive to the Tuesday appointment.  I have 25 rad sessions so I'll be here hanging out too, I have to be away from my family for those treatments and I think that will be the hardest. I thought I was going to be happy to be looking out to the rads, maybe when I start feeling a bit better I will be.  Just read through the thread and there are a lot of positive thoughts and words out there, so this is where I need to be.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2012

    Hi Ladies, just wanted to give you some encouragement.  Tomorrow is MY LAST full radiation treatment of 28 and then I have 5 boosts to my Mastectomy scar.  Radiation has been so much better than I ever thought it would be.  I never got tired even once.  I know that isn't everyone's experience, but my Rad Techs said being tired is for old people.  Since I am 56, it made me happy to know they didn't think I was old!  LOL!

    My skin at the end isn't bad.  Itchy a little.  A lot of the lotions and potions I used, I quit the last 2 weeks.  During last 2 weeks I used hydrocortizone creme and Miaderm for radiation burns. 

    And I am still wearing a bra!  Never quit!   I wore a 100% cotton tank (got at Walmart for $5.00) next to my skin.  Then I wore a 100% cotton snap in the front sports bra in a size bigger.  And then inserted my foam boob (didn't wear heavy prosthesis).  It has worked like a charm!   I am so glad because I am very lopsided!

    Good luck to all!    I was worried about heart and lungs since it is my left side.  I did alot of deep breathing exercises and it really did help the lungs.

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  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    Denise, thanks for all of your good information.  Its nice to read this from someone who has been through it.  I am starting on Monday.  I was wondering if you used the creams right from the beginning.  My RO seemed to think I wouldn't need them immediately but I was wondering if you could prevent some of the skin irritation by using them right away?  I was planning to just use Lubriderm and Aloe but am wondering if I should order some of this Miaderm everyone keeps talking about?  What are your thoughts?

    Gina, I can't believe you have to drive 8 hours!  My sister was far away from her treatments and drove/sometimes flew about the same distance.  She made it through and you will too.  As far as your energy, I started feeling good and "normal" about 3 weeks after my last chemo.  My energy came back, my appetite came back and my mood was even better.  Hopefully you will start to get some energy back.

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  • slak
    slak Member Posts: 179
    edited July 2012

    Welcome Cat and Gina!

    My update - had #20 today of 30, so that means I have 2 more full breast rads to go and then 8 boosts which are only to the incision area.  The radiation oncologist and nurse said that my redness (looks like a strong case of heat rash) is on the lighter side of the bell curve, so I guess I'm doing well.  I really like the miaderm that I got on Monday...I wish I had used it from the start.   

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2012

    Tina Jason - I used aloe and My Girls Cream (which has Calendula) right away.  I do think it helped my skin for the long haul.  I have very fair skin.  Some areas that were radiated had never been in the sun.  For me, I was glad to have Miaderm for when things got worse.  Just my experience!

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Thanks to everyone for the tips.  Tina--I may be on the same schedule as you are.  I was supposed to start tomorrow, but was told TODAY, the planning was not complete.  Hopefully, I will start on Monday.  My last chemo treatment was 6/28.  I will be buying some miaderm and my girls cream as well.  I am a lotion junkie, so I figure anything that works is good with me.

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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    I ordered some Miaderm and got it today, just want to have everything I might need on hand!  I still don't have a start date, waiting them to run the computer model or whatever they do!  They are supposed to call me when they are ready!

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012
    onvacation- I checked out the Miaderm website today and was surprised that we couldn't just buy it in Houston at a drug store.  Weird that there isn't any distributor in our area.  I'll be ordering some as soon as I find out if I have to have rads.  I'll know next week if rads are in my future.  Hope all is well with you and hope you are feeling good.  I know you are ready to get the rads done and over with!!!!
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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Yea i tried to find it and couldn't so just got it from amazon.  Hope you are doing well after #5!  Hope you get good news from the review board next week!

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Kim:  Still waiting to hear when my "planning" is over and I can start rads.  Maybe Monday???   

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  • GinaB49
    GinaB49 Member Posts: 10
    edited July 2012

    Thanks for the encouragement Tina, hopefully everyday I will be feeling a little bit better from the chemo. Just wondering if someone could give me a heads up on what to expect for the marking appointment - it looks like people were saying 1.5 - 2 hours.  Why does it take the length of time?

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  • slak
    slak Member Posts: 179
    edited July 2012

    Gina - For me they did a CAT scan, did lots of measuring, drawing, more X-rays, picture taking (literally took digital pictures of my breast and in doing so they felt the need to reassure me would not get out into the public domain, and also took a picture of my face for identification - I didn't know if I should smile in that picture (LOL)), and then gave me the tatoos at the end.  Took about 1.5 hrs total.  

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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    karen, I wanted to start monday also, but I still haven't heard from them, so maybe mid week?!  Fingers crossed!  Ready to start so I can be finished!

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  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    My RO comsult is Monday. CT and bone scan Tues, Mugga Thursday and surgery for port removal Friday. Find out a couple more appts to set up RADS that'll fit in there somewhere. Should start the next Monday. Whew!

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  • Dianefightslikeagirl
    Dianefightslikeagirl Member Posts: 51
    edited July 2012

    Wow.. Thank you everyone who posted so much good info for all of us getting ready to start rads!

    Denise: I am so encouraged by you not experiencing fatigue. Praying I have the same result.



    I have RO consult tomorrow and I am so ready to start this next phase. Ready to start so I can finish!

    Stacie: I am so jealous of you getting your port out! I get herceptin until next March so I have it until next summer..you're lucky! :)

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  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Still no call on when my rads will start - hopefully I will hear next week or I will be calling them!

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