Winter 2015-16 RADS

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  • Suz-Q
    Suz-Q Member Posts: 205
    edited November 2015

    Hi,

    I go for my simulation on Dec. 8th and hope to start therapy during the holidays. Im doing 16 treatments with 5 boost at the end. I'm wondering how radiation will affect the healing process of my lumpectomy site and my sentinel node biopsy site. Does anyone know what it will do to the scaring/healing process? Right now I can still feel a small seroma in the lump ectomy site and the sentinel node biopsy site is hard along the scar. I had 40 cc's of fluid taken out of the sentinel node area two weeks ago due to a seroma

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited November 2015

    per my plastic surgeon, it does cause excessive scar tissue, so cosmetically, the look will not be the same at all from left to right breast. I have had issues with my scar on the left side too, from internal stitches popping out, to skin infections, to keloids and now, random bleeding. But I think the chemo affects healing much more than rads.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    Suz-Q,

    We want to welcome you to our community here at BCO. We hope you find this to be a place of support and encouragement as you go through treatment! Hopefully the radiation doesn't affect your healing process at all, but definitely something you'll want to discuss with your doctor when you go in on the 8th. Please let us know how it goes!

    The Mods

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2015

    I started 10 rounds to my spine to kick back progression, this week. My RO even opened up his office so I could have treatment on Thanksgiving to squeeze in all my treatments before I head west to visit my parents. I have had 3 treatments and so far only feel like I'm getting the flu, achy and run-down but otherwise doing well. When I return from my visit he'll start on another part of my body with mets (shoulder or hip) zap em with 10 more rounds then hit the last area so I should be finished up by New Years. Hello to all my fellow radsters in the winter of 2015/16

    Amy

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  • Jhmomof4
    Jhmomof4 Member Posts: 6
    edited November 2015

    I will also be starting on Nov 30, but will only have 16 treatments. I am looking for suggestions of moisturizers to buy before I get started. Would love any recommendations as my nurse didn't offer any suggestions and I forgot to ask. Thanks

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  • Molly50
    Molly50 Member Posts: 3,773
    edited November 2015

    Jhmomof4, generally each clinic likes certain products but I have found a combination of aquaphor which I use at bedtime, miaderm, aloe Vera and uddderly smooth cream. The important thing is to get something without alcohol and very little fragrance. CVS has a great aloe product both with or without lidocaine. Ask your nurse what they prefer.

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  • Suz-Q
    Suz-Q Member Posts: 205
    edited November 2015

    Thank you! I wish I weren't here. I'm having a really tough time handling this cancer diagnosis. I spent the day before Thanksgiving crying. Radiation therapy and all of the side effects and the ongoing long term effects makes me wonder why I didn't choose a mastectomy! I'm scared. Every time I get really good news back from test results I feel more like crying than celebrating. My Oncotype score came back a 10 on Tuesday. I really should have been celebrating, no chemo for me. I'm going to talk to my doctors about getting counseling. Sorry for being so negative.

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  • abigail48
    abigail48 Member Posts: 1,699
    edited November 2015

    curtail salt intake, (sodium) will help with weeping. I know it swells the face & stuffs up the nose & is fairly easy to stop; if the eyes just leak the bad effects don't occur

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  • mdoc524
    mdoc524 Member Posts: 336
    edited November 2015

    Suz-Q - Welcome to our group - sorry you have to be here but glad you found us - no need to apologize - it is OK to feel negative we are hear to support each other no matter what - sharing is better than keeping it in .. Cancer sucks & Treatment not fun - we will get thru it together!

    AmyQ - sounds like you have been down this road before - so sorry for your Mets - sounds like your RO Team is awesome and tailoring a plan just for you! Good Luck - keep us posted on how it's going! Hugs to you...

    Jhmomof4 - Welcome too to our group - sorry also that you have to be here but glad you found us... Hugs to you also for your start on Monday! Let us know how it goes!

    Also Good Luck to those starting this coming week - gargengirl, mfsanders, Jabe and Smartinez - thinking of all of you - keep us posted on how it goes!!

    cajunqueen- I am a fraternal twin (twin brother) and I have 9 year old identical twin boys! My brother and I are best friends - talk everyday! We actually owned a house together in our 20's and had a blast! Could not imagine my life without him. Wow 3 under 3 - you go Mom! Hugs to you trying to balance all.. I tried to work thru chemo and finally after 2nd hospital admission for complications I stopped working ... too much... I hope you have some help!! I am thankful mine are a little older and can fend for themselves when necessary.. Funny when they told me I had cancer the 1st thing I said "I can't have cancer I am a Mom of young children" Ha ..

    Hope everyone having a nice weekend!

    Had my 7th Taxol treatment yesterday and succumbing to the fatigue and body aches - ugh! Also caught that nasty Upper Respiratory Sinus cold hat has been going around - not fun & hoping chemo does not make it worse!

    Mary

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  • PattyMeg
    PattyMeg Member Posts: 56
    edited November 2015

    Thanks for starting this post Mary. I'm starting rads sometime in December. I don't have the exact dates yet. Good luck everyone. Patty

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2015

    Welcome, Suz-Q. I was in the same boat as you--stage 1A, grade 2, low oncotype, lumpectomy + radiation, to be followed by endocrine therapy in Jan. It’s natural to feel angry and scared, even if our diagnoses are less dire and planned treatment easier than others’.

    My radiation dept. gave me a handful of tubes of Aquaphor--handy, because they fit in my purse so I could lube-up immediately after each treatment before getting dressed again. At night, I found that both Boiron brand calendula cream and the clear (no dye, alcohol, or fragrance) 100% aloe gel that the cancer center’s pharmacy sells worked equally well. Didn’t even need the lidocaine burn gel or moist burn pads. Now that I am 5 days post-treatment, I’m just using the aloe and it’s fine. I’d advise avoiding Jason’s 84% aloe cream because it smells too perfume-y. If you do buy Aquaphor, make sure that it’s the “advanced healing” rather than the “original” formula. It has more lanolin and you can get it in a tube with its own applicator. It’s not worth buying the large economy size because you won’t use it up. (It’s pretty good for chapped hands, too).

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  • mdoc524
    mdoc524 Member Posts: 336
    edited November 2015

    Welcome PattyMeg - sorry you are here but glad you found us! Let me know when you get your dates - and same for all - I will update our info above ..

    ChiSandy - thanks so much again for sharing your tips with us - so appreciated! Congrats on being 5 days post treatment!!

    Happy Sunday everyone!

    Mary

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited November 2015

    Hi Mary,

    Moving on from Chemo July 2015, and thanks for starting this thread! I'm starting rads in late December, but don't have actual dates yet. I meet again with the RO 12/7, but I'm pretty sure I'll have 15 treatments. I'm a bit different in that I'll first be radiated for my hip and spine mets, to make certain they've been rendered necrotic. Then it's on to surgery in late January with more radiation to the breast area most likely 25-30 treatments probably in late Feb. or early March. Hello to all my fellow RADS sisters and I look forward to us all sharing our experiences.

    -Barbara

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  • Jhmomof4
    Jhmomof4 Member Posts: 6
    edited December 2015

    my radiation therapist wants me to only use aloe. Any suggestions where to purchase this with no alcohol in it

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  • PattyMeg
    PattyMeg Member Posts: 56
    edited December 2015

    I saw an old post somewhere from someone who said she kept an aloe plant in her house and would cut the leaves off to get the pure aloe. Has anyone else heard this or done this? Also, a lot of the information I've been reading says to wear loose fitting clothes, etc. after rads, but my problem is that I had a breast reduction with my lumpectomy, so I have to wear a sports bra, day and night. Have any of you ladies had this problem? I'm worried how these tight bras are going to feel after a few weeks of rads. Thanks, Patty

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited December 2015

    I had 3 weeks of rads and wore bras of all kinds--even underwire--with no problem (except lace felt scratchy). But my treatments, while twice as strong, were aimed at a rather small area and didn’t include areas such as the crease beneath the bust or where underwires tend to poke.

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  • PattyMeg
    PattyMeg Member Posts: 56
    edited December 2015

    Thanks Sandy, No underwires for me for six months. I meet with the radiation oncologist on Friday, so I'm not yet sure how many treatments I will need. My son just moved to your neck of the woods. He lives in Lake Geneva Wisconsin, which I think is not too far from Chicago. His only regret is that he can't get decent pizza. LOL. He was raised on NY style, not deep dish.

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  • Zelda33
    Zelda33 Member Posts: 14
    edited December 2015

    Hi and thank you for starting this thread. I was diagnosed at the end of October and just had a lumpectomy and sentinel node biopsy done two weeks ago. I start rads in January. I have my first appointments with the MO and RO next week, so I'm sure I will have more details then. I just started back to work yesterday after being off for the surgery. I'm still a little sore and fatigued.

    This whole experience has been overwhelming. I am in a good position, but it's not like I was diagnosed with a cold.

    Is there a published list of questions for the MO and the RO for these initial appointments? Is there anything I should make a point of discussing?

    Thank you!


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  • Creativevintage
    Creativevintage Member Posts: 76
    edited December 2015

    I just started my treatments today. I am scheduled for 33 treatments, running over six weeks. I was bit emotional and a bit scared, but the techs were so nice and so comforting. They asked me what my favorite music was and turned on the blues for me. It took about an hour and half with all the moving and measuring and re-marking, but the actual radiation only took a few seconds. I seemed to be a bit emotional the rest of the day, but that happens sometimes. Most days I am fine and strong and then everyone once in a while I just get teary and sad. I guess it's pretty normal after going through all this. My RO recommends aloe gel, but the one they suggested was full of other chemicals and preservatives, so I went on Amazon and got just a pure gel. It was a bit more expensive, but I am so careful about what additives are in my cosmetics and personal care items now. I don't to go through all this just to keep putting the same toxic chemical on my skin!

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  • PattyMeg
    PattyMeg Member Posts: 56
    edited December 2015

    Hi Zeida, I just started back to work yesterday as well and like you I'm sore and tired, but being back made me feel like my "normal self" before all the testing and surgery. I feel like I have a two week reprieve, and then it's on to rads. We will all get through this. Patty. @ Creativevintage good luck with your treatments..

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2015

    HI Zelda, Welcome to the community. We are glad that you reached out and hope you find support and information here. Here are some questions for Medical Oncology and Radiation Oncology. We look forward to hearing from you. The MOds

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  • RearviewMirror
    RearviewMirror Member Posts: 8
    edited December 2015

    I just finished 15 rads plus 4 boosts 10 days ago. And, I am sorry to say, I am finding it very difficult. Find a good bra that supports you--otherwise the gravity factors makes all of this even more complicated. Also--avoid driving in bad traffic. I had bilateral, so -- have not had a good arm to compensate. Kept telling myself I'd be fine...but feel the most compromisd now. It is different for everyone but don't underestimate how how hard this is on our bodies.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited December 2015

    Hi, PattyMeg--Lake Geneva is about 90 min. NW of my part of Chicago (only 60 mi., but traffic’s no picnic). I can sympathize with your son about the pizza, as I’m Brooklyn-born-&-bred. We have a good NYC-style pizzeria, Jimmy’s NY Pizza Cafe, that delivers (the pizzaiolo trained at DiFara) and even makes beignets.

    The brand of pure aloe gel I use is Fruit of the Earth. No alcohol, dyes or fragrance. The pharmacy at the Kellogg Cancer Center sells it.

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  • Sloan15
    Sloan15 Member Posts: 896
    edited December 2015

    I posted this in my Fall rads thread, but I thought I'd share with you!

    DONE! Just finished 30 days of rads. The black marks outline the area for my boosts so u can see it's a little red there. Otherwise, my skin held up really well. I made sure there was no skin to skin touching, and I cooled my breast with a cool air blow dryer after showering and slept with breast exposed when I could. I used Miadern 4-5 times a day, even in the middle of the night. I didn't want to post my nipple area, but it's good, too. I got the little red dots on day 28. Some people have a bad reaction, but I wanted to share a "not so bad" story.

    image

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited December 2015

    Hi

    I am planned to start rads in late January. I have 5 weeks of radiation, I think. I am nervous about it only because I have reconstruction and worry about my skin changes and scars reopening or having to have another surgery to do a skin flap.

    Did anyone work full time during rads?

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  • octogirl
    octogirl Member Posts: 2,804
    edited December 2015

    Sloan, thanks for the post and the positive (more or less) report...it helps!

    I am frustrated today: was supposed to have my sim tomorrow...at five tonight the ROs office called to say all sims were cancelled for tomorrow (no explanation as to why) and the soonest they could reschedule me is Monday am. Could be worse I guess, but still very frustrating to have to wait more when I feel like it is all about hurrying up and waiting. I want to get this over with!

    Sigh. The only good news is that I am not expected at work tomorrow am. I might just sleep in.

    Octogirl

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  • sbeddows123
    sbeddows123 Member Posts: 15
    edited December 2015

    Starting sometime in Jan 2016 for possibly 25 rads....all tbc :)

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  • sbeddows123
    sbeddows123 Member Posts: 15
    edited December 2015

    El Tigre I will be in a similar place :) getting my surgery on Dec 14th bmx with ax dis and te's and expecting to start rads mid to end Jan :)

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited December 2015

    Sbeddows- nice we can compare our adventure through it. I hope your BMX goes smoothly with clean nodes. I bounced back fast, hoping the same for you.

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  • rhp268
    rhp268 Member Posts: 24
    edited December 2015

    hello! New to this thread... getting simulated on dec 10 for 5 weeks of radiation. Anyone else doing this at mskcc in NYC

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