Winter 2015-16 RADS

KateB79 · January 2016

Hey Ladies!

My signature will give you my deets. . . I'm here because, in all likelihood, I'll start rads (chest wall with boosts to MX scar) at the beginning of February, once I heal from scar revision/prophylactic MX. I'm still on the fence, but I want to thank you for making me feel less scared and anxious about the idea of rads (I read the thread).

I was soooooo hoping to keep all of this in 2015, but my RO has given me stats that amount to a 2/3 reduction in risk of recurrence, and that's significant to me. He's recommending 30 treatments (5 weeks of chest wall followed by a week of boosts).

Anyhoo, I'll be back in touch soon. I recognize some familiar names and pictures--good to see you all again (on the other side of chemo!).

xo

Shopgal2 · January 2016

I have my sim for rads tomorrow and am nervous. I feel so unprepared for rads. I kind of knew what to expect for chemo. I am feeling in the dark with rads, esp with what creams, deodorant to use. I only met my ro once back in November and we didn't discuss those things. Should I be worried? I remember asking some questions during my initial appt, but chemo brain had taken over at the time.

queenmomcat · January 2016

Shopgal2 I'm sure others will come along with good advice, but I'd say for now "When in doubt, don't." (don't wear deodorant, don't apply lotions and most importantly DON'T WORRY (except you will anyway, because we all do))

That said, I can't imagine that the staff at your sim tomorrow would take it amiss if you said, "I have a few questions...." Write down the questions as they occur to you now, so you're not flustered at the sim. (I was a right bundle of nerves before mine.)

JerseyGirl22 · January 2016

KateB79, I'm out here too, girl! Had my staging today, so I have tattoos and marker all over me... Went well, no big thing. Go back for SIM next Thursday and then start on Jan. 18th.

Warrior Women! Thanks for making me feel welcome out here on this board!

ShopGal2, ask, ask, ask... When I left staging today, they told me, no deodorant, no lotion, no oils, creams, etc. before rads each day. After to put on Aquaphor or another "approved" lotion, or use 100% Aloe.... make sure to wash off in the morning before next rads... That's just my RO though...

justmaximom15 · January 2016

I specifically asked about wearing deodorant before and after rads and was told that it didn't matter but I left it off this morning just in case and put it on after treatment. I also asked about creams and such and was told that they didn't suggest anything until I start having an issue and then we'll address it. Seems like it would be to late by then though???

rainnyc · January 2016

Hi Winter ladies--

I was told any deodorant is fine, just--as with creams--not four hours or less before the radiation. So if it's a morning session, bring along deodorant or any creams you're using and apply after the session. If afternoon, do as you usually do in the morning.

I was part of a study that is looking at the effectiveness of Eucerin vs. a topical steroid in preventing skin breakdown. Since I got skin breakdown (and plenty of it), everyone is sure I had the Eucerin. They'll have the results in a few months and I'll post here, though I realize that won't help anyone having rads this winter. The rads nurses, who, like the chemo nurses, know everything, say the more expensive creams aren't really worth it.

Having gone through it, I think any moisturizer is a good thing during the process. I was told to use Sarna, an OTC product, when itching developed, and once the skin started becoming more irritated, I have used copious amounts of Silvadene, a prescription antibiotic cream, as well as Aquaphor.

Natejordlee · January 2016

I was given the same advice as rainnyc. I had my first session today and they said deodorant doesn't matter anymore and apply my cream a few hours before ( worse case they will wipe it off but it won't have an effect). I was recommended a cream from a local mastectomy shop that alot of women recommended, Glaxol from Costco. Day one was good except my mold is a little tight on my surgery site but otherwise quick and painless. Wishing you all the best .

Lee Anne

TallnTerrific · January 2016

Well had my staging today and it was not too bad. The treatment center does not have the tomo therapy machine, but the Doc had worked at a hospital that has had it and said it was good for head-neck or prostate-lower abdomen cancers, but did not help much with breast cancers as they would not want to give the 360 radiation to the lungs especially (even though it was low levels). He said since most of the cancer risk is in front, the linear treatment machines do the best job. He said even if he had a tomo machine he would not use it on a breast cancer patient. I am not sure what to think. It seems different docs say different things. I wish the answers were clearer. I guess I will go ahead with this center as I was fitted for the mold today and signed the consent.

Just to weigh in, my doc said deodorant not a problem, just apply lightly, they did not mention a stomach down position for treatment, and they favor Aquaphor as a cream, but not less than 2 hours before.

Suz-Q · January 2016

ctgal48, my MO was fine with me waiting for a month after radiation was done to start on Arimidex. Im not very anxious to start it with all of the possible side effects. I am getting a second opinion on the 14th. I heard that Doctor likes to start women on tamoxifen and switch to an AI after a couple of years. Neither sound wonderful to me! I told myself that I will keep an open mind about the drugs and deal with any side effects when and if they happen. Many women don't have side effects.

Shopgal2, the nurse had me watch a short film on radiation then she went over ALL of the details. Keep pen and paper close by so that you can write down questions as they pop into your head. I see my RO once a week so I always have a list ready when I see him.

My RO nurse said I could wear deodorant because that area was not in the radiation field for me. I am not having lymph nodes treated.

From what everyone is saying it sounds like every doctor has a different cream preference. Mine had me using a corticosteroid from day one! So far I'm barely pink! I have 2 more days on the whole breast to go! I haven't tried anything else.

I asked my RO this morning how long after treatment endsbefore I will start healing. He said about a week after I stop having treatment. Since I have two different treatments, whole breast and boost, most of my breast will start healing then a week later my boost area will start healing.

HappyHammer · January 2016

JerseyGirl....you got same info my rads peeps gave here in the sunny (but FREEZING cold) South said....do rads...use Aquaphor twice daily....have had itching so we added cortisone cream.

gargengirl09 · January 2016

Happy New Year ladies!

Mary-So glad you are done with chemo! Bet you are glad to have that in the rear view mirror! Hoping radiation is much easier on you!

I am doing well. Only 10 more radiation treatments left! Starting to get redness, ok, it's more purple than red… Trying Aquaphor in addition to the Gold Bond Ultimate Healing lotion.

I had a terrible upper respiratory virus the past week. Fever, coughing, etc. Thankfully I didn't end up in the hospital!

The end is in sight!

ctgal48 · January 2016

My RO nurse told me not to apply deodorant or skin cream before my treatment. I bring it with me and put it on when I am done. I have only had 4 treatments and the only discomfort that I have is the nipple area. I am using Lubiderm for sensitive skin. My RO told me to be sure to apply the cream to the entire breast which includes the lower portion of the armpit. My lymph nodes are not being treated, but the lower portion of the armpit is in the treatment field. I was frightened to begin radiation but I think now I am more afraid of the tamoxifen. The side effects sound terrible and 5 years seems like a very long time to take any medication. Have to get ready for treatment #5. Wishing everyone a good day. Thanks for being here.

StefLove · January 2016

mary, great photos!!

Only 10 more rads to go!!!! 4 normal ones and then 6 boosts. Can't believe it's almost already done!

Peachy2 · January 2016

Doing the happy dance because I had #25 today and the last five will be boosts!

Just wanted to share a product that has been helpful. A co-worker finished her radiation at another facility and shared with me some samples of My Girls cream that I've been using. It's not as heavy and greasy as Aquafor. Not sure if it's because of the cream, but today my RO said that my skin is at the better end of "good." I mentioned the cream and he said that the hospital gives out Aquafor because the company gives them tons of samples, but a lot of women really like MyGirls. It's available at their website and on Amazon.com. The company is based near here in Wellesley, MA, so there are a some more local northeast retail outlets listed on the website.

http://mygirlscream.com/

HappyHammer · January 2016

Sounds like everyone is doing pretty well...such a busy board, can't comment on everyone. Know I appreciate all that you share!

Agree about writing down questions and answers. Have a great day everyone! Moving forward, moving forward!

LiDu · January 2016

Creativevin… Thanks so much for the reply. I'm new to the site and didn't realize it wouldn't notify me of replies. Mepelex sounds great. I'll ask my RO about it. So far he's just given me an Rx for Silvadene, which is helping only minimally. I'm also using coconut oil, which my previous RO recommended.

I noticed this morning that I have a raised solid feeling area of skin near the crease of my underarm. The tech seemed to think that was normal. Many have mentioned skin tightness, but mine feels more like tightness in the underlying muscle. I've been trying to keep up on my physical therapy, but it's becoming a challenge.

15 down, 10 to go!

PattyMeg · January 2016

hi ladies, I had treatment number 10 today and I have a red bum by rash on my chest, so RO is going to start checking my skin twice a week instead of once. I hate Aquafor. I may try some of the other products you've suggested. Any of you ladies who want easy crockpot ideas, check out this site.

http://www.buzzfeed.com/melissaharrison/crock-pot-...

You can prepare a bunch of meals, freeze them, and dump them in the crockpot in the morning. I thought these might be helpful, when we are all fighting rads fatigue. Good luck everyone, Patty

LindyC · January 2016

Got the call and my first radiation treatment is this Thursday. I don't feel prepared as I haven't really looked into what creams to use to prevent skin SE's. I finished chemo 3 weeks ago and with the holidays and recovering from a nasty cold, this came up fast. I know it won't affect my skin after the first treatment but I'm just stressing a bit as I am always usually prepared well in advance. Lots of info here so I've got a day to research.

Scotland219312 · January 2016

Lindy, did you get any info from the RO? Mine said I would get a thorough briefing from the nurses when I did my sims. I start on the 25th, and feel really unprepared. I'm going to mutiny if I'm still clueless after my briefing

Peachy2 · January 2016

Deep breath, Lindy! Since you'll only have two treatments before the weekend, you can regroup and figure out what you need on Saturday. I used plain Aveeno lotion for the first couple of weeks and didn't need anything else. Around week three I started with heavier stuff and sleeping in a cotton sports bra, slathered with cream. So, you're good for a while!

Shopgal2 · January 2016

Had my sim today and all went well. I got my 3 tattoos and will be using the active breathing machine to expand my lungs and prevent damage to my heart during rads. It was a little weird to breathe into a tube and hold my breath for 20 seconds intervals. My sim team said I did great. I even joked with the one male tech in the control room that he and I had the same hair cut. I took off my beanie and flashed him my 3 1/2 week hair growth. He made me laugh when he rubbed his bald head and said he'd show me how to be smooth with a razor. I smiled and said been there done that $100,000 cut courtesy of my mo. I go back next Tuesday for port films and start rads next Wednesday.

Hey Lindy my ro said no underwires, no deodorant on treatment side, and to use the 2 bottles of lotion she gave me after rads. She said no lotion 2-4 hours before rads. I will see her every Tuesday after rads. I got a walk through on how to register each day, changing areas, and saw the rad area. I meet my official tech team next Tuesday. Ro also said last 2 weeks of treatment I may feel better going without a bra and wearing a long tank without a bra shelf and to tuck it under my breasts to avoid skin to skin contact. She did say she prefers cornstarch under the breasts or even underarms to keep dry.

LindyC · January 2016

Thanks all for the advice. I know I'll be fine. I just like to be prepared...a bit or the control freak coming out in me. I didn't get any info at my sims except for a booklet with protocols, procedures, what to expect for SE's and suggested creams. They've been great at the cancer centre all along so I'm confident. Now, my old neck injury is making my shoulder/arm ache and I've only had one acupuncture and active release treatment. Next one is Friday. Needed this to pop up now like I need a hole in the head...Hopefully the pain won't interfere with my positioning....and I have to hold my breath too. Fun times ahead for me

Shopgal2 · January 2016

Lindy I took a prescription anti inflammatory for my neck pain from an old herniated disc injury. I feel you with wanting to be prepared and knowing what to expect. With chemo we knew a routine every 2 weeks and knew what SE's to expect. Now it is different and there is the unknown that is unnerving. I'm going to think positive that Iwill have minimal SE's and focus on getting each treatment done is closer to being done overall.

phoebe58 · January 2016

well...... think of a Shakespeare play -- not Taming of the Shrew, but Much Ado About Nothing, as my highly anticipated January 4 Monday start was delayed til Wedn Reason: "oops" -- new rad onc [previous one off on maternity] changed my protocol from 28 at a gentler 1.8 greys to the 16 protocol.... as he hadn't noticed I had diep surgery with immediate recon already.

I found this out only at end of my helpful prep meeting and walkthru [similar to yours shopgal] with nurse where various things were suggested -- soft cotton bras if I must, avoid skin to skin rubbing, warm showers only facing away, well hydrated, no lotions at least 2 hours prior, lubriderm or aveeno fine to start 3 x daily, only deodorant without aluminium, salt water compresses, no antioxidants, no smoking [don't anyways] and minimal alcohol [both deplete oxygen which radiation needs] etc Then I was asked if I had any questions, and when I casually inquired just confirming the protocol as 1.8 x 28, he looked at me like I had 3 heads, so he contacted the RO, who then came flying down the hall saying I would need to wait til Wed so they could recalibrate for the 28, as it was a little easier on the diep flesh. Lesson here is make sure you listen to your gut, double check and ask ask ask. Good luck Lindy-- I am a day ahead!

tshire · January 2016

just had treatment 4 today. Does anyone else feel occasionally twinges of pain in the radiated breast? Or is it my imagination

Suz-Q · January 2016

tshire, it's not your imagination. My RO asked me if I had any shooting pain or twinges at my one week visit. He asks if I'm experiencing any pain at each visit. It is common and normal. I did not have any. I'm having my last whole breast treatment today then on to the boost. I am starting to feel a little difference in my breasts this week, and my radiated side is starting to get a light pink tinge that doesn't go away. So far my skin is holding up. Who knows what the boost area will look like in another week

keepwalking · January 2016

I had number 1 of 21 today (includes 5 boosts) and it was so quick! When they said it was done I thought they were just getting started! The long part was waiting for and meeting with the nurse for instructions. She was very kind and said to drop in anytime I had questions. I will meet with the RO each week as well.

I didn't get tattoos - it seems they will just reinforce the red and black marks all over me when necessary. They gave me my own little thin blanket to put over me each time (I am to bring it to and from - no gowns used here), and they even covered both breasts with the blanket during the treatment! It seemed weird at first, but I know that this type of radiation can penetrate such material easily, so I guess they add that in to the calculations.

My radiotherapy center recommends to not use any creams or lotions at all - just to leave the skin dry both before and between treatments. But, she did recommend to use the cabbage leaves if there was any hotness or itching! She said to wash and dry the leaves and to keep them in the refrigerator. She said after a while I would probably feel more comfortable to wear a soft cotton undershirt instead of a bra.

I feel encouraged! I hope everyone is doing well today - moving onward!!

Creativevintage · January 2016

Well tomorrow is last regular treatment. YAY! I am very red along my collarbone and along the intramammary node locations, but other than that, I'm doing pretty well. I am tired and will stop working for a couple of weeks while I have my boosts and then a little time to recover. My RO says she does not think that the area over the collarbone will open up, as they are finishing that area today. I have have been using aloe and covering the area at night with mepilix dressings just so it doesn't rub on my nightgown. The breast itself is just a bit pink, so she is not expecting any additional problems in that area with the boosts. I am so glad this is almost over. My techs have been absolutely wonderful and caring during this whole time, so I am sorry that I won't be seeing them, well maybe just in the cafeteria now! I will start the aromatase inhibitor on the 22nd and will continue Herceptin infusions until June, so I can't really see myself making a big deal and ringing the bell after rads, as I am really and truly not done with my treatment until June....

octogirl · January 2016

Only three treatments to go for me! Party on Friday night! :-)...but after sailing through, I did notice a small patch of iffy skin last night, and it is in a bad area: on the underside of my breast, right where it rubs against my chest (I am large breasted). It isn't visible when I am standing or sitting, though it is presumably visible when I am lying on the table.

I slept with a cool cloth tucked under the breast, and will show it to techs today. RO saw me yesterday, but I didn't mention it because I didn't know about it: I didn't notice it till last night, because of the location, and because of the fact that it doesn't hurt or itch, just looks like skin is breaking down there. RO didn't notice either, but he didn't do a very complete exam. This is probably partially my fault for telling him that all was great and that I've been having no pain, no itching and no skin problems. Lesson learned for others: check the hidden areas (for large chested women), and be sure to put plenty of the cream there too.....and the cool cloth is something helpful to buy (for Lindy and others wondering about preparation: I didn't find I needed it after each treatment, but I find it helpful to prevent skin on skin contact now....

Still no pain or itching though, so I am cautiously optimistic that I will be done with minimal SEs...

Octogirl

Peachy2 · January 2016

tshire, the nurse that I met with for orientation before treatment specifically said to expect twinges, and to not be alarmed. Yes, I've had them too! Creativevin, my only really irritated spot is along my collarbone too.

Today was my first boost, so I now have a lovely Sharpie squiggle oval around my surgical scar. In case it rubs off, they've made template. And took a photo. The tech said that "tomorrow will be so quick that you will be able to leave the car running in the parking lot."

Winter 2015-16 RADS

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