August 2019 Radiation Starts

loiswb

Yndorian1, you will need to be able to put your arm over your head somewhat but I'm sure that they have dealt often with patients who have had a recent surgery. Share your concerns with the techs/staff, and keep doing the exercises! I think you will feel better once you have that first appointment down and get more info!

GiddyupGirl

Thanks prehistoric down to three now counting the days. Try not to be too anxious, I have a serious medical phobia and once I did the simulation I was fine. Most of the time is spent lining you up and the actual radiation is only a few minutes. How many do you have to have and which side. (I did left and am now a pro at breath holding which will make it hard for my family to drown me if I get anymore annoying) get your moisturisers ready and keep them in the fridge. Wishing you a relaxing rad ride.

Yndorian: Glad they got your appt for you. Don't worry about your limited shoulder movement. I separated my left shoulder a number of years ago and it can be an angry elf (the elf goes well with my rudolph boob) but your arms are in adjustable arm rests and they set them up so you can be as comfortable as possible. So they will work around what you need. Good Luck and let us know how it goes.

MountainMia

The link below is a review of rads process at one particular clinic, Memorial Sloan Kettering Cancer Center. Each hospital, clinic, or cancer center probably has a slightly different process, but the info here is probably pretty representative. Anyone who has questions about process can probably find a lot of the answers here.

https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-breast-chest-wall

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Thank you Giddyupgirl! LOL about Rudolph 🤣🤣🤣

It took me a while to understand the joke, I hope to don't end with a Rudolph... or It

SparkleGirl2018

Hi all!

Moving here from the weekly taxol board which I finished two weeks ago. One treatment down and on to the next

I had my set up appointment today and start rads next Wednesday the 21st. I will have about 30 treatments. My center does not do tattooing, they use a paint pen and put tape over it. Said I could shower as usual just not to scrub that area. They will touch up as needed.

I had a supraclavical node light up on the pet scan I had before starting chemo (which freaks me out even though my oncologist said it was so small and might just be inflammation from my mastectomy) and so they are doing a couple of boosts to that area.

Looking forward to keeping updated with everyone and sharing our experience! It makes going thru this a little easier to share with others going thru the same thing.

Debbie

stayingpositive2019

Hello,

Well, had my first treatment this morning and it was pretty uneventful. It is true that the set up takes longer than the actual treatment. They did take an x-ray first before I started to ensure that nothing had changed from my planning CT 2 weeks ago. There were 2 techs and they were out of the room for less than 5 minutes and that included the x- ray and the treatment.

My appointments are all early in the am so that works for me. I plan to go to the gym in the morning, then straight to radiation (which will not be so nice for the techs, lol, all sweaty and no deodorant!). Then home to shower and off to work. I was at work today by 9:30.

Have a great day! and hope all goes well for those having treatments this week.

Laura

Barbjc

Hi all!

I was in the May group of RADS thread but wanted to let all of you know about a Recommendation that works for me if you're skin gets really bad…My last day of radiation was July 4. Mine was on the left side so were they were doing the radiation with the breath hold technique to avoid the heart and lungs

I didn't drink alcohol during my 6 1/2 weeks of radiation, I drank a ton of water and each day I rode my bike to and from treatment... I think this is what helped me not get headaches and not be tired. I used Aquaphor and a prescription steroid cream .... and I literally had zero skin issues until the last week of radiation… My skin was only slightly pink, but then the last week and during the boost my complete breast turned dark purple/red and began to blister and itch ...it was very painful and irritating! I tried every prescription cream they gave me but nothing helped.

The only thing that saved me was a prescription for Xeroform medicated gauze...it's used on burn victims and i'm telling you it was: Complete relief and I noticed an immediate healing beginning...not sure why they waited to give this to me so long!? I would put the moist pad over my breast, then a non stick gauze pad over that, and then a comfy bra. I applied these 2x/day, in the morning and then before bed, for about 3 weeks (24/7, The only time they were off was during a shower) and it completely healed my skin. I am totally back to normal with no skin damage. Ask your docs about getting this if you have a bad skin reaction. My skin healed so quickly and it was such a relief to put the pads on my skin.

Good luck to all! You will get through this!!

Barb:)

MountainMia

Thanks for the recommendation, Barb! Always good to have information about ways to manage SE.

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Thanks Barb, I appreciate the experiences of other people who have already overcome this!

I'm sitting waiting for my first app and I'm freezing with fear!

loiswb

Hi everyone, I just got the call and I start tomorrow! Will get them at 12:45 for this week and next week and then be able to move to late afternoon which is my preference. I have not been worried or nervous but now that I know it's starting I'm slightly panicky! I'm sure it will be fine and the sooner I start the sooner I finish!.

MountainMia

Good luck, Lois. Remember the sooner you start, the sooner you're done! ;-)

Frisky

Sonia, I'm thinking about you and hoping that your first session went smoothly and you were able to relax once it started.

My radiation treatment brought a lot of relief and stopped some mets in my spine, I hope it all works well and permanently for you, without anySE. big hug!

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Hi there!

Frisky, thank you! You are so sweet!

Today was my first date and they didn't do anything to me yet. Just talk to the RO. I will have a CT and then they will do the simulation to me ... I thought that all that would be today... What a fool. I just came home with a list of tips and advices. All this seems eternal to me.

Sparklegirl: I also have a supraclav. Appeared after needle biopsy. I hope it is nothing

I hope you all are well!😘

loiswb

First one done! Went fine. Took longer than I thought because they were taking a lot of "pictures", ? xrays before the actual rad given. They said this was the longest one and normally they do just a few "pictures" once a week. I got tired of being still and keeping my arms up but that's sorta minor. They did not give me any tips on skin care which I thought they would.

GiddyupGirl

Hi all: here to wish you all the best with your rads. I finished yesterday (25 plus five boosts). If you have a question or concern talk to your techs. It is their job to listen and help.

Lois I hope your first treatment was easy and uneventful. Skin care moisturiser moisturise lather slather and repeat. Even if your skin looks great do it any ways. Wash gently each day - I gave my boobie its own bath with unscented dove daily and a pat dry. My skin held up fairly well until the boosts. Was mostly just red.

Sonia - you got started that in some ways is the hardest part. You will do great.

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Thank you again Giddyupgirl. I'm glad that you are done with rads. 👍

DorothyB

I had hypofractionated radiation which is the same amount of radiation, but over less treatments. I had 20 reg + 5 boosts (if I remember right). I got red, but no real burns and no open wounds.

My tips on skin care:

I started putting lotion on everywhere that might be radiated as soon as I knew it was starting soon. Went all of the way to center line of body, all under arm, a couple of inches below breasts and up to collar bone. After I started treatment, I had them show me where the radiation entered and left so I knew where to lubricate.

My RO told me to put on Aquaphor after each treatment. My last visit w/ her, I told her how often I had been lubricating and she said that she is always fine with more.

I mixed lubriderm type lotion w/ something else in my palm and applied it 3 x per day. In the morning I mixed w/ Glyphol Base, immediately after treatment I mixed w/ Aquaphor and at night I mixed w/ Aloe Vera 100%

MountainMia

Thanks for the info, Dorothy. I haven't put any "goo" on yet because a) I'm traveling now, and b) the marks they put on me are with Sharpie marker with some kind of tape over them. I'm afraid something like Aquaphor might loosen the tapes and dissolve the marker lines. But I'll be in on Monday for my simulation run and can ask about it then.

DorothyB

MountainMia, I also had the sharpie w/ tape over them. I still lubricated, just was careful not to put much on or push on the tapes. You will likely need the tapes replaced at various times during the treatment process - but agree that they should stay in place until after first treatment at least I would tell them when I went in if one or more were bunching up in the shower or otherwise seemed like they might come off before the next visit.

MountainMia

Tomorrow is my simulation. I'm eager to get this thing going!!

Paloma1211

Good luck MountainMia! I’ve done 9/30...it's moving right along. So far, so good - my skin is faintly pink and slightly tender

I lube up 3-4x a day to keep my skin moisturized. I’m using Calendula cream right after rads. Cetaphil mid day. And a combo of Cetaphil & Aquaphor right before bed.

loiswb

Good Luck MountainMia!! It will all fall into place now.

ctmbsikia

Hi. I was just thinking of the summer rads group and all you have to deal with PLUS the heat.

In case this hasn't been mentioned previously, I wanted to let you all know what helped me was wearing 100% cotton against my skin during the entire time. I choose not to wear a bra, but if you do wear one, put it over a cotton tee or camisole. I still do this today at times as I get random rashes from wearing these tight sports bras (I need compression for a seroma) and then sweating. Glad I saved a few tanks and Cammy's that weren't completely ruined by the Aquaphor.

Best wishes to you all. I've found that doing whatever you have to do (no matter how ridiculous)- to feel good and be comfortable helps your mood tremendously. I was just in a bad patch with stiffness, boob pain, and then the itchy rash but I made adjustments and thankfully I'm doing much, much better now. Godspeed.

MountainMia

Thanks, ctmb. I think it's good advice -- "doing whatever you have to do (no matter how ridiculous)- to feel good and be comfortable helps your mood tremendously." That's basically what I finally decided about my hair/no-hair. NO ONE CARES that I don't have hair, so I finally quit wearing a scarf or hat, and I'm SO MUCH more comfortable. It does really help my mood.

Today is my first real rad treatment, 1 of 20. Yesterday was sim and it only took a few minutes. Hoping today's goes at least as easily and quickly. It sounds like there will be 2 techs who are with me almost all the time, and aside from today and tomorrow, they are all scheduled for same time of day. On Thursdays I'll also see the RO.

SparkleGirl2018

Thanks for the advice ctmbsikia! I start rads tomorrow. I have to wear a bra due to the size of my other breast after mastectomy (now I wish I would have gotten a double mastectomy!) so wearing a cotton cami underneath my bra is a great idea!

GiddyupGirl

Sparklegirl and Mountain Mia - I just finished last week so well acquainted with heat mixed with hot boobie. Best advice I got was from my tech - he told me to keep a moisturiser in the fridge. It is much better than a beer on a hot day. It really did help to cool boobie down. Wishing you both and everyone who is starting their rads all the best. It goes faster than you think and really enjoy it when you get breaks for the weekends.

MountainMia

I'm just home from my first of 20. It went easily, so I'm hopeful that at least the first few will be similar.

stayingpositive2019

Hey Mountain Mia,

Glad to hear 1st one was okay. I have done 6 as of today and all have been similar. Super quick and easy. I am only just now starting see a very very slight tinge of pink and a little discomfort in my sports bra, especially where my scars are. But if I add more cream, the discomfort goes away. So I bring cream to work with me and basically carry it wherever I go!

I too have decided to go hatless this week! and that feels good.

Laura

loiswb

Hi everyone. done with #4 here. So far no pink or significant pain. I am tentatively planning to go w/o the hat/scarf starting next week. We'll see. I am starting the think I look better without the hat than with it so I think it's time. But I deal with clients all day so I'm nervous. And my teenage daughters who all have long hair are also skeptical. But I think I will do it anyway. I am relatively small chested but am wearing some cotton pull over bras with no latches or hooks or anything and so far they are comfortable. (but, just getting started so..)

loiswb

quick update. Saw RO after todays treatment and I will be getting 30 total, not 33. Still 5 boosts but they changed the dose/strength (or whatever) so the total amount is the same but saves me 3 treatments. So I will be done 3 days sooner than I had thought. Also means I will finish in September and not go into October (assuming no unforeseen problems) which seems psychologically a somewhat big difference to me!