Winter 2015-16 RADS

octogirl

Welcome Y0tis, we are glad you found us. This whole process is a scary one, but most find the rads to be quite doable. Let us know how the sim goes and please do post any questions.

Hugs!

Octogirl

Shopgal2

sure I'll share the weight loss octo. The clinical trial I am in with my ro is to help study with the effects of rads on skin toxicity. The patients in the trial are on a calorie reduction of 1150 calories a day for 10 weeks. The trial and calorie reduction began 2 weeks before rads, continues thru all 6 weeks of treatment, then 2 weeks after. Most patients lose 10 lbs total over the trial. Seems I have hit that already. I just have no appetite since chemo. The trial has you log your food intake on the my fitness app. It's really easy. I just plan my dinners daily to help me kind of know what calories I will be eating during the day. Breakfast is cereal or yogurt. Planning helps. Usually I have calories left over at the end of the day and actually need to eat more. Lots of fruit and veg. I eat minimal carbs, fats, & meat rarely. Plus I joined a gym too for the first time in my life. I just really don't want my cancer coming back and if it means changing my lifestyle I will.

etnasgrl

I did a separate post, but maybe you guys can help me here too....

Last night I noticed that my breast was HOT to the touch and very, very pink. Yesterday was my FIRST treatment! (I have to be honest, if my skin reacted like that at only the first treatment, I'm scared to see how the next few days and weeks are going to go!)
I'm applying Aloe right after treatment and Aquaphor in the evening, before bedtime. Is there anything else that I should do to help my skin? I did buy a cooling towel as well.

Any tips/advice would be GREAT! Thanks so much!

keepwalking

etnasgrl - I understand your concern. I just finished 12 of 21 treatments today. I remember feeling the same after the first treatment (at least feeling hot and discomforted, although not pink) and I was thinking the same as you - if I have this after just the first.....(!) But, perhaps it was just the shock of the first treatment, because after a couple I did not get such a reaction afterwards. As of today I am just pink, and the RO today said my skin was doing very well.

I am following the advice of my center which is - NO creams or lotions, just wash gently by hand and baby soap and gently pat dry. For heat and/or discomfort I apply a clean, dry, previously refrigerated leaf of cabbage every day after rads and leave on for up to a few hours. I tell you, it has taken away the sore, swollen nipple and the achey discomfort every time! I also am trying to air out as much as I can. I am mostly wearing a sleeveless, cotton undershirt instead of a bra, or when I need to wear a bra I wear it OVER the undershirt so that it is the cotton next to my skin.

I hope this is not a bad portent for you, just the initial shock, and that you will get by just fine!

Natejordlee

First congrats to all of you ending this week !!! El tigre - I had never heard of the boosts either , I asked my doc and she said that it is more for people who do not have complete mastectomy's, also depends where you are, She said more common in US where she used to practice but in Canada (Ontario) where I am from we get it a little different. I get my regular dose (which is also slightly higher then in the US to chest wall, lymph nodes, skin (IBC) and i get a slightly higher dose to the collarbone lymphs because they weren't touched in surgery ( hope it helps) Ask your doc though they can explain it pretty well. All those that mentioned feeling a little more down , I too was the champion of postivity through out and the rads are getting to me and I can't figure out why. Went to see someone yesterday at our cancer center but she was useless so I am trying to journal ?? Etsna girl - i read on here Cabbage leaves seem to really help , sorry you had such a tough first treatment.WTG Shopgal. Fingers crossed you don't get sick. For all those in treatment still.. half way through the week !!!

Lee Anne

El_Tigre

Thanks Natejordlee - I emailed my RO and she called me back. I asked about the boosts and she said the same that it's more for lumpectomies and bmx with no reconstruction. also it all depended how my skin held up. I get the collar bone nodes as well as the chest. I am nervous to start but also can't wait since it seems like I can't do anything proactive right now for these 3 1/2 weeks other than getting my lupron shot. I also got to speak to me MO and she said that she woudl be fine if I did Tamoxifen during or after rads. BUT there is controversy on whether it shuts the cancer cells down that you woudl want active to zap (peachy mentioned this as well) SO.... yeah debating on that.

etnasgrl

Thank you girls!

I will stop at the grocery store on the way home from my treatment and pick up some cabbage!

octogirl

Thanks Shopgal...so, in other words, no magic bullet, just reduce calories, eat food that is good for you and exercise. Maybe I was a victim of magical thinking and was hoping there is something new out there! :-) I am exercising (and posting on the 'exercise during chemo and radiation' thread)...and have cut back on calories post chemo and post holidays, but not losing. Altogether I gained over ten pounds during and just after chemo. The fact that vegetables tasted bad but mashed potatoes and ice cream tasted good (or at least decent) probably had something to do with it. Working on it though, and good for you for being disciplined, Shopgal!

On a different topic: I am now 11 days post final rads and I am seeing signs of healing although I do have two large open spots on my skin and peeling. The open spots don't hurt, though I am having some itching, and I am less tired. I will admit that I came home from work yesterday and collapsed on the couch and let hubby cook dinner for me, but that was mostly because of a brutal work day....

Hugs to all;

Octogirl

Catfurr

Congrats to those who are DONE!! YAY!!

Flu was pretty rough, but finally over it. Just left with a cough, only using inhaler once a day and sometimes during the night. Didn't get a flu shot. Usually don't anyway, but MO said no and PC said they're not effective anyway.

Today is #20, my back is red and itchy. Worst is the clavicle area tho. Skin is red and blistery. Techs say it's because the skin is bunched up there during tx since my arms are over my head. Sharing a pic for those just starting. Not really painful, just itchy.

It is lonely in there, isn't it. There are holes on the ceiling panels, with lights behind them to look like stars, tho and occasionally a beam goes thru like a shooting star. Kinda cool. I count the holes in the panels just to distract. Does your center have anything on the ceiling?

I don't really understand the whole thing either, having a complete pathological response to chemo, negative lymph nodes from the start, but now radiating the crap out the whole area. I get that it's supposed to mop up anything that was left, but does that mean the test results are not accurate? Seeing RO today and it's on my question list.

Hugs to all!!

JerseyGirl22

Congrats to all finishing this week, y'all are Rock Stars!!!!!!! 3 down, 27 to go for me... so far, so good! I see the BS tomorrow for a follow up, after my rads appt.... I can't believe I'm 7 weeks post BMX surgery... seems like forever ago...

Warrior On! You are all in my thoughts and prayers!!

Zelda33

Finished my fifth treatment this morning. Fifteen more to go. I am fatigued, queasy and my breast is turning pinker by the day. The residual lumpiness in my breast after the lumpectomy is getting harder too. I am using Jean's Cream 3x day. I know I'm lucky that I'm not sitting in a chair with an IV of chemo, but radiation is more intense than I thought it would be. All in all things are going well and will be over sooner than I think. Thanks for your support and reading!

etnasgrl

Catfurr ....The shooting stars sound pretty neat. My center has panels on the ceiling that have tree branches and cherry blossoms on them.....it looks like you are under the tree, looking up to the sky. It's really very pretty....BUT....I can't really see it. I'm getting Rads on my right breast and they tell me to turn my head to the left, so I all I can see the wall.
Pretty boring.
They do play the 80's on 8 radio station though, which I love! So, I close my eyes and jam to the tunes of my youth! LOL!

Shopgal2

cat fur ouch! That looks like it smarts bad. Hope your ro has a cream for that.

Octo thanks for sharing what it's like after rads. If the calorie restriction lessens the effects of rads then I'm a believer in my ro's research study. It does feel weird to not want a chip or cookie, but I now find veggies and fruits more filling. But If I want a sweet I do have one. On New Years I made a devils food cake with chocolate icing. Ate a slice and was in heaven. It was delicious. First time I tasted chocolate since chemo. I could have cried it was so good.The researcher running the study reviewed my food log with me and picked on my cake! Wtf! I almost popped him in the face. He obviously didn't understand what that cake meant to me even thought I tried to explain. Well needless to say I told my ro and he no longer is reviewing my food logs for the study.

JerseyGirl22

Natejordlee, I can relate to the "being a champion" during chemo and surgery, now 'm only 3 days into rads and feel down and sad... This is last BIG treatment phase, I should be on this, but can't seem to get up the energy.

zelda, I feel fatigued and a bit queasy, too. only on day 3... not sure if its rads, or my anxiety taking over... especially laying on the table with nothing to do but think and pray... They do have these beautiful, low lights that change soft glowing colors throughout treament, which helps a bit, since my head is turned to the left the whole time, at least I can see the pretty colors when I open my eyes... and it's better than chemo!

Catfurr, I hear you on the unanswered questions thing... I didn't have a complete response to chemo, and positive lymph nodes at surgery, so I get that they are doing radiation. I was surprised though when they said they were radiating the superclav node... turns out its a good thing, but still, didn't know that going into rads, until they started marking me and I wondered about it out loud. Called the RO on my way home from the appt to ask what that was all about.

I hate being my own advocate, and not knowing what to ask sometimes! I hate using the internet to look up stuff about this stupid disease because most times it just makes my anxiety worse.

KateB79

I feel anxious and emotional, too. Maybe more emotional than I did when Taxotere ate my ovaries and thrust me into menopause at 36. (I'm exaggerating, but only slightly.) Seriously: I could cry at the drop of a hat.

Here's to trying to maintain a positive attitude anyway.

Sim is tomorrow. Probably starting first of February, assuming that they convince me they can avoid my heart. If not, "gray area" will begin to mean something else. . .

Re: "scar opening up" . . . I appreciate the clarification. I was freaking out!

etnasgrl

I met the sweetest lady in the waiting room yesterday, when I arrived for my first treatment. She's 85 and was there with her granddaughter. She told me all about her experience and then wished me the best of luck.
I saw her again this afternoon, when I showed up for treatment number two. She was telling me that this is her last week and that she's excited to ring the bell....her whole family is coming, lol.
She's just such a nice person....very kind and soft spoken. I hardly know her, but I enjoy talking with her.
I'm thrilled that she's about done.....but as strange as it sounds, I'll miss her.

Have you guys met anyone in the waiting room that you connect with or became friends with?

Jabe

Jabe

I rang the bell for finishing my rads today!!

HappyHammer

Jabe- YAY!!! Congrats! Are you doing something to celebrate? You look GREAT!

Jabe

Thanks HappyHammer! No big celebration tonight--hoping to this weekend. My husband gave me a wonderfully sweet card and I'm getting cuddles from my daughter and dog

etnasgrl

Yay!!!! Congrats!!!!

Peachy2

Congrats Jabe! My cancer center didn't have a bell. Wish it did!

El_Tigre

congrats Jabe!!!!

rainnyc

Dear ladies of winter radiation,

Learn from my mistake! Or ignorance. I finished rads about a month ago. The bathroom sink has been draining slowly for a couple of weeks and finally clogged altogether. DH fixed it with boiling water and a quart of Drano. However. What we figured out is that because I've been slathering on the Aquaphor and washing my hands afterwards--and because it takes a lot of washing to get it off one's hands--that probably clogged things right up. It wasn't just that: I have the chemo salon do, but DH and teenage DS both have longish hair, which they've been known to comb over the sink. But I bet that Aquaphor stuff had a lot to do with it.

So....maybe use a paper towel to get off the worst of it before you wash your hands. And I hope you don't need it for long!

marijen

Good point rainnyc - I hate call the maintenance guy. thx.

Today's question.... do they ever radiate both sides in the same treatment visit?

JerseyGirl22

Jabe! Yay! You! Congrats on finishing today!!!!!

KateB79, thinking of you and sending you good vibes for SIM tomorrow.

Natejordlee

Jabe _ Congrats !! Etsna I have met some great people in the waiting room and had some great conversations. I know what you mena about missing them .. strange how quick you bond when we are vulnerable and open.

Lee Anne

PattyMeg

Good for you Jabe! I'm ringing tomorrow!

KateB79

Thanks, JerseyGirl22! I'm pretty nervous, but still hopeful that phase 4 (aka rads) will be uneventful. . . .

Congrats to all who have finished or are finishing soon. I'll pick up the torch for you.

octogirl

Yay Jabe!!!! Happy Dance!!! Congrats on finishing.

Octogirl