January 2018 RADS group

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    Today I'm 12 days post rads. And I have to say I noticed yesterday that its clearing up. I no longer look like I spent a long day at the beach without sun screen. Its not "angry" looking anymore. As others have mentioned before me, it's amazing how fast it starts to heal.

    I'm lotioning up 4x a day. Those of you still in the rads mix, keep on lotioning up! If your RO says no lotion, I think you have to follow their recommendations. We can't second guess your RO. There is a light at the end of the tunnel for all of us warriors. Onward!

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  • kokoro
    kokoro Member Posts: 4
    edited January 2018

    PauletteK, my RO said no lotion at the moment and no perfumes. She also said no deodorant, no soap, just soap of Marseille or Alep, these are obvious French soaps, but I think the meaning was to use just neutral soap and fragrance free.

    But I will ask better on thursday during consultation.

    Do you think I can use after treatment?

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi Kokoro and all. I'm posting the instructions I got from Johns Hopkins, which may be helpful. There is actual clinical research on calendula cream, so I'm very much in favor. But of course everyone should decide for yourself.

    Good luck this week!

    image

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    scaligirl, time goes by fast isn’t it. You are almost to the finish line! Yeah!!!

    Kim, you will be fine, we are all here cheering with you.

    Amy, our skin does heal fast, this is not too bad when we compared to chemo!

    Back in June my PET scan kidney shown some nodes, so I went for ultrasound today and tech couldn’t even find my cyst. He did ultrasound as my MO requested but nothing serious he can find according to him, full report will be out soon.


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  • JenRuns
    JenRuns Member Posts: 350
    edited January 2018

    Kokoro, my RO said the same... no lotion. Keep it dry and clean, and if I need something, they’ll give it to me. He really emphasized that there are no clinical trials that demonstrate anything works to prevent skin damage. His belief is what’s going to happen will happen, and you deal with it then.

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  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018

    Hershey - I'm jumpin in the pond! I loved that. You ALL are the absolute best, and I truly appreciate the support. I'm getting it here and there in "real life" (my kids are so great) but I find that I really am relying on this group for an opportunity to pray and give, and also to receive. It is just really good, you know?

    The simulation went great today. No tatoos (whew!) just marking me all up. Such nice folks there. When the very professional gentleman rad tech came in to educate me (like y'all haven't already taught me everything!), he asked me at the end if I had any questions and I said "you are great, I just wish you were a female, you know? I'm pretty modest." And guess what? I came out from changing into the gown and he very nicely said that he had switched with the female tech that was working and would that be OK? Yes! I'll probably see him sometime, but I was glad he listened and did not take offense.

    Thanks for the protein suggestions. You all rock this so well. I promise I'll be good. Let me get dinner on the table and I'll check back later :)


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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Paulette, great news about the scan! I know you must be relieved!

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Done! wow, I can't believe I'm done with that phase. Now on to keeping it from ever coming back. To celebrate, I got an oncology massage and it was wonderful. She made adjustments to my position to avoid bothering my breast and arm. Again, it was wonderful. Then I stopped by my daughters on the way home and she made me a grilled cheese. What a great day.

    Even if you are just starting, it doesn't last forever, you can do this!

    Gentle hugs to everyone.

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    Smwusaf- Congrats on finishing rads!

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  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    smwusaf Woohoo!!! Congrat's on being done!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Smwusaf - Congrats to you! Such a great feeling to have it behind you and to celebrate with a grilled cheese!

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Smwusaf .... congratulations! 🎊🎉🎈🍾 Happy feeling and happy dance! That will be the end of he treatment!



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  • Tpralph
    Tpralph Member Posts: 487
    edited February 2018

    Smwusaf- Yay!  so relieved to be done I'm sure.  I am just half way, finished 13/25.  looking forward to the end of this. Got a call by my employer discussing back to work! She sent out a mass email to my fellow workers letting them know when i am coming back and my RTW hours, they are almost as excited as I am. What a great bunch of coworkers... Starting to feel like normal might be around the corner.

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  • DownNotOut
    DownNotOut Member Posts: 99
    edited February 2018

    So, so happy for you, Smwusaf! You have so much to celebrate! Congratulations!!

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  • DownNotOut
    DownNotOut Member Posts: 99
    edited February 2018

    Hey, guess what? I got a call and my planning is already done (a miraculous 48 hour turn around time!) and I start my RADS tomorrow! I'm going for 16 treatments with 4 boosts, so 20 total. And since I'm starting on a Thursday, I have the weekend to rest my skin and only 3 treatments on that last week so hopefully that will help too (gosh, you have all taught me so much!). Is it just me, or is Someone smiling down at me? So, I guess I really did miss out on being with my January RADS group, but I'm still feeling the love for you!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited February 2018

    Down, I'm so glad you can get started and get this behind you! Here's to minimal SE's!

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  • SoniaL
    SoniaL Member Posts: 131
    edited February 2018

    Congrats smwusaf on finishing - yay! So where did you go for an oncology massage? I'm in Charlotte too and would love to check into that, sounds wonderful. Enjoy your morning walk tomorrow with no rad appointment to get to!

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  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    Congratulations of finishing the course! A lady at the office I go to finished yesterday and got her diploma. She walked by with a big smile on her face. I cried I was so happy for her.

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  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    I’ve thought about wearing a dress with leggings to my treatment. But I’m worried seeing my thighs might scare the technicians! I look forward to wearing dresses any day I’d like.

    Congratulations

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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Congrats Smwusaf on finishing and Downnout on having a plan!!!

    I got good news today. They decided to give me 4 boosts instead of 5 so I'll be done on Valentines Day!!! So I'll have 16 regular and 4 boosts. I saw the physio again today and bought a special compression bra. Super ugly but will be good to support my swollen boob. Lol.

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  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    Well, I was wrong about how many treatments I have left. I'll finish on February 21. The last 5 days are boosts. Thanks for all the reminders to lotion up! I thought the 4 big tubes of ointment would last the 30 days, but I think I'll have to get a couple more tubes. So far just very red, no break down in my skin. The doctor said I'm doing well, but she also told me I had a “beautiful cancer". Caught early, very high rate of “cure". 9 full treatments, with 5 boosts at the end.

    Any one have a problem with a knife like pain through the breast? Starts at the top of the breast and goes down. Started last night. The kind of pain where you hold your breast a pray it’ll end soon.

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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited February 2018

    Wonderful news Smwusaf! So glad you got that done and behind you. Gratz!

    Not to deflate anyone's thoughts about rads, but they were almost too quick to get me on those 35 treatments. I would have to discover some sort of study? about women similar to me who tried 3 weeks instead of 6. So, when the call came to get me to come in tomorrow (2/1/18) to begin the treatments, I had to tell them sorry, not yet. Earlier today, I had asked them for (proof) of the so-called studies of women who were like me, did chemo first, then lumpectomy, then onward to radiation or NOT. Risk numbers were mentioned: SHOW ME THE BEEF! I don't know what decades they were born in, but I don't go blindly into the battle without my ammo.

    Chemo made perfect sense and thankfully, "cured" me. Confirmation came when they took out what was left of the lump and a couple of nodes (all negative). So, why blast away at apparently healthy flesh? Not to mention, I'm still on targeted chemo every three weeks (Herceptin).

    Please, don't let me talk you out of starting rads. I was all for it for a short time until I realized that the information I was receiving couldn't be backed up. Can all of those ROs be right in using the same time frame? This isn't the 60's. I want to see proof of those studies and I want to know why certain individuals can't get 3 weeks instead of 6. What aren't they telling me? In any case, I made an appointment with a different RO and hopefully, they'll get my records before then.

    Guess I'll have to move to the February group once there is one?

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  • Towardshealth17
    Towardshealth17 Member Posts: 47
    edited February 2018

    So happy for you smwusaf! Congratulations! 🎉🎈🎊

    I am getting down to the last few. Had my first boost yesterday. Here I am awake in the middle of the night after falling asleep exhausted very early. The itchiness and pain wake me. My RO said to stop the lotion and only use the cortisone cream she prescribed. I also started taking Zyrtec daily which the doctor was ok with. Not sure if it is helping but I do have very sensitive skin. Mine looks less like sunburn and more like a rash. She thinks I will see improvement by next Tuesday. Not including today I have 3 more boosts. They wrote on me with a blue paint pen and said not to rub it off but it’s not permanent. I can’t wait to be done honestly and begin to heal physically and emotionally. I admire all you ladies so much. Big hugs

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  • Towardshealth17
    Towardshealth17 Member Posts: 47
    edited February 2018

    Down. So happy you have a plan! So grateful to you for starting this group and I will continue to cheer you on! We have all learned so much from each other.

    Sending you love and light. Happy February. 💕🌸🎀💕

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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Sweetpea6217 My daughter is an RT and she has said they often do a longer Rads course on the left side because they want to minimise the potential damage to the heart. You get the same "amount" of Rads just more slowly. My friend had pretty much the same diagnosis as me but she had her tumour on the left. She had a longer course than my 20 treatments (16 regular, 4 boosts). It goes on chest size, shape, where the tumour was located etc... as well.

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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Skookum I've been getting a lot of shooting pain in my breast too. I blamed it on physio then Rads straight after today but it might just be Rads. Lol.

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  • smwusaf
    smwusaf Member Posts: 129
    edited February 2018

    SoniaL- Call the Levine Center of Supportive Care and Survivorship on Morehead. 980-442-2500. they do accupuncture, massage and other stuff. Very nice group over there.

    It was certainly nice waking up thinking that I could take my time getting ready for work today. It's cold but I'm about to bundle up for a walk.

    Thanks for all the well wishes. This forum has really been helpful in keeping my sanity this past 30 days. Keep strong Ladies, I can't wait to see you each at the finish line!

    Sarah

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited February 2018

    Sweetpea- I had 16 accelerated rads. Before they could tell me if I could do that, there is criteria for it. I needed to: be over 50, small breast, small tumor, no lymph node involvement, no chemo, and lastly preferred on right side. Mine was on the left. I had to have CT scan, they had to see where all my organs were, none swollen etc. Then the RO and another specialist I can't remember the title of, review a "fake you" on computer imaging, to ensure the plan for you does the least damage to other organs. If it can be done, you'd get reduced rads at higher intensity vs longer rads at lower dose. Hope you find the information that you're looking for to make the decision that's right for you.

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  • hhuey
    hhuey Member Posts: 151
    edited February 2018

    Woo hoo hit the halfway mark today..Day 15 out of 30..It has gone by so fast..my skin is a little pink and sort of rashy near the top near my collarbone...I asked my doctor last week exactlt where they aim the beam and found out it gets all those little lymph nodes in the clavicle area but I also have to ask where the beam that goes under me is hitting exactly..I get 4 zaps..one from my left side aimed at chest wall, 1 from atop me at chest wall..one from my right side and then one goes almost all the way under me..anyway so far so good..glad to hear everyone is doing pretty well..

    Congrats Paulette and Smwusaf for making it to the finish line..Good luck to you both on your new journeys with this phase behind you.

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  • smwusaf
    smwusaf Member Posts: 129
    edited February 2018

    hhuey, half way is great. Closer to the end I could actually see an outline of the area being radiated. It was weird and looked just the computer generated plan he had shown me. Still itchy but healing. :)

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