August 2018 Starting Radiation

That's a good question. I haven't met with my RO this time yet to see exactly why I'm going from 20 to 33 (although it might be only stage?).

Hey all!

I have my first apt with the RO on August 9th. I know not everywhere is exactly the same, but can someone give me a general time frame of how long it will be between when I have this initial apt and when I actually begin my radiation? We have a Disney vacation planned in October, and I’m trying to figure out if I will be finished in time or if I need to reschedule (again-ugh cancer!!!). Thank you

Hi Colleen,

From all the posts I’ve been reading on the radiation threads, it seems people are starting treatment about 1-2 weeks after mapping/measurement appointment. I had first RO consult on July 17th and mapping (CT) appointment on July 20th. I juststarted radiation on July 30th. I am also planning a family Disneyland trip in October! Best wishes at your RO appointment!

I've been to WDW several times around my bday in late October and it is really pretty (all of the Halloween decorations!) and nice weather. Sounds like Moni is going to Disneyland, where I've never been (and probably would not travel across the country to get to--FL is relatively close!). I'm actually making my husband go. He's never been before--not exactly a theme park kinda guy. When our kids were younger I took each one individually and had the *best* trips. I get a big endorphin rush every time I think about that place. I promised hubs I could make it a fairly adult trip--light on the thrill rides and heavy on the Food & Wine Festival. ;-) Colleen tell your RO about your travel plans--I'm sure they'll work with you. (Just keep it light your first few days down there--you might be a little fatigued following rads. Or better yet send everyone out to the parks and have a pool/spa day for yourself!!)

Oh gosh I *love* those surprise-your-kids-with-a-trip-to-Disney-World videos!!

Wow!! All this Disney talk is exciting!! Glad to know many have a plan for Fun at the end of the radiation road. I love October and fall, we actually have October plans for a Maine cottage on the ocean, can't wait. For those going to see the Mouse, im excited for you, i have never gone.

So today was my7th radiation treatment, and I finish on August 30th. I believe I read that the body size has something to do with how many days, and how they divide up the strength of the prescribed individual dose of radiation.

I'm fortunate to be a 12 minute drive from my treatment center, so it already has become kind of routine, ( after last week's panics I had) they set me up with an ID card that I scan when I come into the waiting room, they call me in within 3 minutes and I leave 10 minutes later, i get coffee, and this week have picked up my walks again. My center has the onco Dr seeing me once a week, and after every 5 treatments, they take an x ray to be sure the original markings are still accurate as any swelling, etc, can alter the angles and precision of the treatment. So far, still using the ice packs for an hour immediate after treatment, then aloe, cornstarch powder to stay dry. I can now just start to detect a bit of achyness, and swelling, but its not bad.

I just got home from my mapping & tattoo & practicing the breathe in + hold thing to protect my heart during the treatments. It all went ok & was mostly just tedious.
Still no word on when I will actually start - closest anyone would commit is "probably in 2-3 weeks"

I had my first treatment today. Took about 40 mins I'd guess. CT first to get position confirmed. Then 7.7 mins of treatment. I had some questions and they were great about answering and explaining.

I'm having 16 treatments with 5 boosts incorporated within the treatments. The boosts are targeted at the location of the Tumor and in my case are due to a narrow, although clear margin of .5 mm as opposed to 1 mm.

The machine I'm utilizing to a huge donut thing, a Tomography machine. Supposedly more accurate and able to do the simultaneous boosts. Apparently there is a new study coming out soon about this new method. My RO was involved and he suggested it as an option even though the results have not been released. His comment was “radiation is radiation is radiation."

I'm also using a barrier film on the radiated area. Applied 2X/week. No other creams to be used. It's a 3M product and I forget the name. Will advise later.

Today I got a headache shortly after finishing my treatment. For now I'm assuming it was a coincidence.

I purchased 2 Ameona camisoles today to wear during this time. I had tried them on a couple weeks ago. They are not inexpensive ($80 CDN) so I looked around and couldn't find anything similar, even though I have purchased years ago just in regular shops. I like them and will be able to wear anytime, anywhere. And super comfy. I’m all about the comfort!

My treatment times vary quite a bit. I have a schedule for the first 10 days but it is subject to change. So you have to take the paper in everyday. They mark off the current day and update it with any changes. My treatment in the morning is at 8:10, and I'm wide awake at almost midnight. It's nice that I live 5 mins from the hospital....

Djt, with regards to no underwire bras, do you have a store near you that specializes in post mastectomy bras? There is one quite near me and they have lots of bras that are shaped and have no underwires. You’d never know by looking. I have purchased bras at this shop in the past, as they carry regular bras as well.

Something for everyone, including a large selection of wigs, should they be required. I have read that Nordstrom’s carries post mastectomy bra needs as well. The term post mastectomy is used to refer to all types of breast surgery, including lumpectomies.

I hope you were able to find something that is comfortable for you. I have in the past, when my wires poked me just pulled them out and continued to wear the bra especially if it was a favourite. I am mostly a D now, although I used to be an E. sadly I got rid of my larger bras before diagnosis and don’t want to deconstruct any of my newer bras as they still fit me post surgery. A pleasant surprise.

I just got done with my radiation consult. Looks like I will be getting 33 treatments (5 boosts to incision site). The other 28 will be chest wall, nodes, and regional nodes. I am a little surprised about the treatments to my clavicle area, but the RO pointed to studies that say this is beneficial for high risk patients. I think my age (32) makes me high risk throughout this whole process, but also the grade 3/Her2 status. Just wondering if anyone else will or has had treatments to the neck area..

My CT will be on Monday and I bet I start the 13th or 20th.

I finished radiation on July 20th. They told me no lotion 2 hours prior to tx. They saI'd they didn't want the area wet. They also told me go ahead and lotion up in the dressing room before I left. I read somewhere "lube the boob " and it made me chuckle as I did so. I needed a little humor.

I was happy how well tx went. No burn for me at all until I was already finished. Then I had a little reaction. Its going away pretty fast now.

HI Micahmom. I live in NC. Treatment was in Asheville

MoniThor

Cool you and I started on the same day. A friend recently just finished radiation, in her last session, her radiation nurse said to her “ the worst is yet to come, good luck” while sending her on her way. So her radiation burns got worse the week after and she then understood what nurse meant. Another patient I run into said she was fine thru the sessions, but fatigue hit her bad at 3 weeks.

So I am kind wait and see how will it be for me.

Let’s keep sharing.

NVDobie - thanks for the info about the Mepitel. I'm indecisive. (actually, I'm indecisive about *everything*. It's a really common symptom of stress for me; I grind to a halt and just stand around going "hm, this? or maybe that? Or maybe these?' over and over again... At least I recognize it now lol). I ordered some lotion from Triderma.com (it was recommended by someone on this site) and I'll have aloe lotion from Jason & maybe that's enough. I hope so.

kidogo - I posted on another thread about the sleepwithme podcast. I never had problems sleeping in my life until I was wired from steroids and stress during chemo. Now that I finished taxol I often turn it on in the evening even though I don't have much troubles falling or staying asleep anymore - I just like listening to my 'borefriend' (that's what he calls himself lol) for a few minutes before I zonk out... I'm cutting & pasting what I wrote there:

"How about trying the Sleep with Me podcast? I really didn't think this could work but it does. It's just a guy telling really really really pointless boring stories. New podcast lands every few days but there are some that I just listen to over and over again. I fall asleep within about 10 min.

Set the volume so you can just barely hear it. You can set your app to turn off automatically at the end of the episode or let it continue to the next episode. When wired on steroids during chemo I once went through 6 episodes in one night - I'd just lightly wake up, hear him muttering on and on, roll over and go back to sleep.

The first 20-25 min of the podcast is him talking to the audience, talking about his advertisers & sponsors, and responding to questions from listeners etc. I recommend you skip all that and just get to the story.

of the recent episodes, 678 The Lemonade Experience has been one of the most reliable ones at putting me to sleep but I've also liked 681 Bernie the Butterfly & 685 Cloud Tower

https://www.sleepwithmepodcast.com/episodes/

Hi NVDobie,

I’ve been reading, too, that the SE from radiation treatment can be worse in the weeks following treatment. Besides aloe Vera and calendula cream, I have decided to keep drinking lots of water. I got into the habit of keeping super hydrated during chemo, and I’m thinking about how good drinking a lot of water is for the skin. And since radiation burn come from the inside, drinking lots of water must help. So I carry around my liter bottle of water and refill it several times a day.

Time will tell if it helps, but I figure it can’t hurt, right? After today, we will be one week down. Yay!

Monic