Starting Radiation Sept. 2019
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Yndorian - I should be hanging in the Louvre!
Smackan - I am going under the beam at 11:00 on Monday. I'll be thinking of you.
UpstateNYer- thanks for the encouragement!
Acucindy - I hope you feel better!
Ananda - love that. I really wanted tattoos but got blue sharpie instead. That is now rubbing off on my clothes.
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OK. Sunday is ending. Tomorrow again to the tanning machine routine... Someone mentioned that when half of the treatment is reached, it seems that it will never end ... but then it ends quickly. I hope so. Good luck for those who start tomorrow, and few SE for all of us!
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As the weekend comes to an end, I hope all got great rest to start a new week!
Smacken and dogrunner mom - good luck Monday, keep the faith
dogrunnermom - hope breathing practice was good, once this first one is done Monday you will feel good about things.
Accucindy - I felt tired from the beginning, I was surprised as well. I actually was in bed by 9pm both Friday and Saturday this weekend. Not sure why so early and I think this is the week for me to apparently start feeling tired:) I also have had a scratchy throat.
UpStateNY - congrats on the halfway mark! I will hit that this week
anada8 - great cartoon! At my dry run, I was so marked up with dots and sharpie, it was crazy!!!
Done 7 of 20, skin still holding up. I have been using the steriod cream my doc gave me and aquaphor. I am allergic to aloe so have to stick to the simple. I find if I take a rest each day when the body says stop I do better but am still dragging.
I am hoping for the SE that removes my armpit hair, my RO says that sometimes you even stop sweating under that arm. I would be okay with those!
Have a great week. Stay positive on this journey as it is a journey, long one but there will be an end!
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acucindy- I have 8 of 16 done, no aches for me. Hope it continues.
ananda8-loved the cartoon. 😊
yndorian1- Hope the aches and soreness subside for you, and your tiredness does not worsen.
Rlws- you are 1/3 the way through! Good for you. I ,too, wouldn't mind to not have to have sweat or shave under my arm , time will tell.
Hoping that I will not go through a depression after rad txts. are complete. As you can see from my signature, this journey has been going on since early February. I won't be doing mammogram and MRI until April.
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acucindy- I have 8 of 16 done, no aches for me. Hope it continues.
ananda8-loved the cartoon. 😊
yndorian1- Hope the aches and soreness subside for you, and your tiredness does not worsen.
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I start radiation on 10/7 but have a few questions from those who are already going through it.
It seems like most off you are having shorter # of sessions than I am. I am scheduled for 5 weeks of radiation (25 sessions) and 1 week of boosts (5) = total of 30 sessions. My RO said this is standard treatment. So I'm wondering...Are those having lower # of sessions getting higher doses and those, like me, having higher # of sessions, receiving lower doses at each time?
My RO said most people can work during radiation. My plan is to work my full days and then do radiation at the end of the day. Rest in the evening and on weekends. Are most of you able to work without taking off or lowering the hours worked due to fatigue?
For those doing the breathing technique, did you find it pretty easy to do? I will start my breathing "training" this Friday but I'm wondering if I will be too nervous during the radiation to be able to hold my breathe long enough.
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mocame-hello and welcome to our group. I am taking 16 total txts. I just had #8 this past Friday. You are getting lower dosages than me each time. I am getting 267 centiGrays each time. If I were to have to go 5 weeks or more, would be at least 100 centiGrays less each session. I also had IORT at initial lumpectomy, but needed these additional rads due to unclear margins.
I have not personally experienced fatigue so far. Chemo was much worse. My skin is holding up well, not sore, but a little pink. With you going for a longer number of sessions, you may experience fatigue and soreness after the third week. Everyone is different. I do think you will be able to work having txts. at the end of the day.
Good luck with it, I think you will do just fine.
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mocame,
I had 30 days plus 4 days boost. This was 12 years ago. I think they are always tweeking things and tailoring them to the individual.
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Just starting the radiation phase of my treatment tomorrow, the 23rd. It’ll only be a trial run and a class. Then the real deal starts the next day, Tues, the 24th. I got my tattoos and CT scan and mapped out, last week. I am scheduled for 32 treatments. Does that make me the winner for having the most radiation treatments? Not a title I really want......unless it comes with a trophy.
UpstateNYer: Comforting to see your name here. We definitely are close to the same treatment time frames. I am curious to hear how it’s going with the Anastrozole. I will start it after radiation is complete. Only good, strong, healing thoughts about radiation taking care of any stragglers. And, yes, that’s exactly why we did chemo.
DogMomRunner: Glad to see you are here as well. You are starting one day ahead of me. Can’t wait to hear how it goes. There really is comfort knowing there are others right along side of you.
To everyone else: I am eating up every tip, every experience you share and all insights into your journey. Thank you.
This really is the long run. I have managed surgery, the chemo side effects, some lingering, but the emotional journey is what is kicking my butt lately. It comes and goes. I know I’m in the home stretch, treatment wise, but damn this is hard. Oh, and NOW my eyebrows and lashes fall out. Love and strength to all of you.
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tennisgirl1- May I ask why you needed chemo? Was your Onco score high? Your diagnosis looks like it would not warrant having chemo. I also lost most of my brows and lashes weeks after chemo ended, but my hair is coming back nicely. So far so good with anastrozole. I wanted to start it right away as I was diagnosed over 7 months ago. I had the option to wait until rads were finished.
Best of luck to you with starting rads this coming week. You should do fine with it. The days go by very quickly.
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Tennisgirl1, I am the lucky winner of 33 sessions 25 + 8. I really would have preferred the short treatment, but sooner or later we will all finish it!
UpstateNYer, I am glad that things are working well for you after all the initial setbacks of your treatment. Don't think about depression. Stay in the moment❤
DogMomRuner: Good luck today!
Ananda8: 12 years ago! Congrats!
Mocame: Ditto, we are having less dossage per session.
16/33 done. Have a nice day, girls...
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Happy Monday All!
Today was #15 - 1 reg tx and 4 boosts and then I am free from rad tx. However, I doubt I will be free from the SE. Some skin issues over the weekend w/ pain. And yes, accucindy, very achy. Wasn't sure what to contribute that to except maybe the table and position, long drive to the clinic? Who knows really. Nurses say it could be any of those things or all combined.
I am really really tired today. I tried to rest this weekend but the aches and pains made sleeping difficult. The RO gave me a script for Tramadol but I am so hesitant to take it. But if the aches and pains don't move on soon - I just might have to give it a try. I need to get some good rest and sleep. The RO and the nurses both said that this is the point that pure exhaustion starts and you will feel so tired all the time. Takes about 2-4 weeks after treatments stop to get back to normal. I laughed - In the last 7 months I have forgotten what normal is,but I want it back!"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." - Eleanor Roosevelt
Fight Like A Girl!
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UpstateNYer: Based on my numbers, my onco score should have been in single digits. It came back at 24, which is one point lower than the cut off for recommended chemo for my age group. After consulting with trusted docs, I decided to be aggressive and attack with everything offered. I am really glad I did. I never want to have regrets.
Yndorian1: Yep, you win the prize! How’s it going for you?
Today is my rad class and dry run. Tomorrow, it gets real. Strong and healing thoughts to everyone today.
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Best wishes to everyone about to start or going through radiation. It's no walk in the park. In my experience the fatigue improves when the radiation is over and energy starts to return. I noticed a big difference at the six month mark. In the meantime,
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I had #1 done today finally!!!! One of the machines was broken so I had a 2 hour wait but it was over so quickly after that. Since there were so many woman waiting due to the machine being broken, there was a lot of sharing and I saw the rashes and burns on many women - that was a little scary but I am still being positive. Oddly, I have been nauseous off and on for the last hour. I know it has to be all in my head so I keep telling myself that. I hope my mind listens but it rarely does
Glad everyone is doing well and welcome to everyone who has just joined us.
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Smackan - It's not in your head, regarding the nausea. I was severely nauseous during my first week. So much so, I would vomit about 20 mins or so after treatments. My RO was in shock and said that there was no way it was due to RADs. Interesting to me that it started immediately after my first treatment and I was not sick at all that day prior to RADs. Same for the days afterwards, on the weekends I was not nauseous, only when I had had a RADs session. Anyway, I took my Zofran prior to treatments the rest of Oct and it took care of the nausea. So nope, not in your head. I've read that others have experienced it to. Hang in there!
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I didn't know if my nausea was from the Rads or the anastrozole. Until you said something about the weekends - I hadn't noticed that it's much less on the weekends hardly at all. Makes me wonder if the rads is making the nausea from the anastrozole worse. It's a tricky slope we walk these days. You never know what's going to set something off. My skin is now a very bright pink and has started to itch and hurt just at the part where the arm meets the shoulder - not under the arm tho and most of my breast aches. Get these zingers like an ice pick to the boob. Just another gift from rads.
But there is light at the end of the tunnel. I hope. Keep having this fear that they are going to say - oops we need to do more. As my Mama says "this too shall pass and days be brighter"
Have a good evening ladies and here is to a great tomorrow.
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Hi tennisgirl! Nice to see you here but sorry you have to have radiation too.
Thanks for the luck Yndorian. I think it really helped.
We did it smackan! First one down.
PinkArmor - I am sorry that your skin is taking the brunt of the treatment.
I would really consider taking the tramadol if only to get some rest.I was so nervous last night that I got maybe 5 hours of sleep. The whole breathing thing got into my head, I guess. I told the technician that I was more nervous about radiation than I was about the chemo. It went ok with no waiting. I guess I held my breath well enough to get it done. And repeat tomorrow.
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Hi all,
Smackan-sorry you had nausea after txt. and also for having to wait. During my simulation, machine broke and I had to drive 18 miles to another facility to finish. Hope the nausea doesn't continue.
tennisgirl1- I will be thinking about you for your first txt. tomorrow. Good for you in taking chemo. In my case, had no choice. I have a friend who had a score like yours and she chose chemo as well.
PinkArmor-do you think some of your nausea is due to anastrozole? I am fine with it so far. But only started it Sept. 5th. Sorry about the issues you are having with your skin. My skin is pink, but not itchy or sore yet. I have 7 more to go. You will be finished 2 days ahead of me.
Yndorian-how are you doing today?
DogMomRunner- how did txt. go today, thinking of you.
rlws, ananda8, acucindy-how are you doing?
Sending warm hugs and prayers daily for all of you sweet gals.
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Dogmomrunner- we must have been posting at the same time. Glad it went well today, and you were able to hold your breath ok. As time goes on, it will come automatic and you won't even be thinking about that part.
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Had number 8 yesterday, 12 more to go! I feel very excited for the halfway mark, not sure why but it will happen this week. My skin is holding up for the most part, just a little pink and some irritation under my arm, wearing shirts that are soft to help with that. I too have had those 'zingers' PinkArmor, not fun!
welcome tennisgirl - good luck with #1 today!
Mocame - the breathing gets easier as you go. The first time and the dry run I was so nervous I could barely take it but now it is just a thing and not a big deal!
Dogrunner and smacken - so glad you finally got to start your trxt!
PinkArmor - sorry your skin is suffering so much, I feel I am right behind you with most things. Hope it gets better. Are you using steroid cream or anything? I am not taking tramodol but am taking lexapro to help me sleep. It is so important we stay healthy so that sleep thing is important. I struggled sleeping from first surgery on so have been on a month and it is really helping my mind not to race and to get the rest I need. Good luck!
I hope everyone has a great day today! Remember we are warriors and will be stronger women through our struggles! Fight the fight!
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rlws - Good to know! I'm glad I'm not the only one and hopefully everything will go smoothly.
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17/33 today. Starting the countdown tomorrow. The skin is still ok. I hope all of you are well, ladies! ❤
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Good Afternoon Ladies! Terrific Tuesday to all of you! Hope rad txs went well today. I finished my last reg tx and now move on to the boosts. Didn't know till this morning that I have to do markings and position over again for the boosts. Just another adventure.
Skin is ok. I am finding that I am hot pink starting the 2 hours after tx and then by bed time it fades out. Go figure. The itchy is still there a bit but nothing hydro-cortisone won't take care of. The RO was happy with how well my skin is doing considering I am paler than a ghost. I burn in just a few minutes in the sun and sunscreen never works. So actually I am doing super good. I have been using a gel a breast cancer survivor makes that's all natural and full of pure aloe. It's wonderful and I think the only thing that has saved my skin. The rads hasn't affected my open wound either. It's stopped the healing progress but has not worsened and today was the last txi in that direction so maybe now it will start to heal again. Left side is still really deep but it's healing. I graduated today at the wound clinic to '"see you in 2 weeks" from the every week schedule. Happy about that!
The fatigue monster has gotten me big time! I am so very drained and tired. RO said today that it will get worse before better. That most of the SE will continue from 2-4 weeks after txs end. Awesome. Bright spot however - Hunting season has started and that means weekends alone. I love my husband dearly but I look forward to these little breaks where I don't have to do anything. I stop and get something to eat on the way home on Fridays and I don't leave the house unless I want to till Monday AM. The quiet is so great! So I will have plenty of time to rest and get it all back.
UpstateNYer- I do think alot of it is the anastrazole. I started it before rad tx and the nausea started right off. I have days where I barely notice it and other days it's full blown all day. I have noticed the aches and pains have started a bit, but that could be the position on the table and all the extra driving I am doing every day. All this on top of a full 8 hour day at work is alot right now. I will know better how I am doing on it after all this settles down some and life is semi-normal again. It's a least 5 years on this drug so I got to make friends with it somehow.
Hugs to everyone- do at least one thing nice for yourself today!
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Mocame
I am doing five weeks too. I start on 10/8. Got some tattoos today (I would have preferred a butterfly 😁). I too plan to keep working. Fingers crossed for all of us!
Laure
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PinkArmor: I'm happy for you! You have finished the heaviest part of rads and your skin did well! I hope the increases are easier ... You're almost done, girl!
Tennisgirl1: How was your first session?
DogMomRunner: I hope you are dominating breath control like a yogi! 😋
Rlws: halfway mark is very exciting, we should have a halfway mark shower! 🎆
Ananda8, Mocame, Laure, UpstateNYer, our dear Spoonie, Accucindy... ❤❤❤
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UpstateNYer - great minds post at the same time!
rlws - congrats on #8! I'm glad your skin is holding up.
mocame- I was also very nervous about holding my breath. Much more nervous than the start of chemo because I was afraid I would screw up somehow. I had the second one today and felt much better about it.
Yndorian- yay on #17! You are doing great!
Laurencl - welcome to the club! I wanted tattoos and just got sharpie and stickers.
PinkArmor - I hope you get some rest and some down time. I'm glad your skin is doing ok but I worry that you are pushing yourself too hard. Take a "Me" day and do nothing except maybe watch movies or read something interesting and not related to work.
Love to all of you - DogMom the Breath Yogi
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Hi all- just thought I would check in. I finished 11 of 16 today and am getting so excited to be done. I haven't been on here in a few days as last week fell apart for me. My car was flooded in the heavy rains down here and I had to miss one treatment. Emotionally it was just really hard dealing with one more thing. Now I am trying to work, do treatments, deal with insurance, search for new car etc. But I know this too will pass. My skin is still holding up great, just barely pink and maybe a bit more sensitive.
Hugs to all as we get through another week!
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Just popping in to say hi again....congrats everyone on making it this far through RADs....keep on going! YOU can do this.
About breath holds, I see some of you have been stressing over it, which is completely NORMAL!
Like DogMomRunner mentioned, I too was afraid I was going to screw it up somehow. What helped me was asking my RADs techs about this directly. For me and the machine I was being treated on, they input thousands of data points from all my imaging info from the "setup" (plus recalibration for each treatment and a new scan each week) and other mumbo jumbo I couldn't hope to ever comprehend into the computers that run the machine and it established a "parameter" for me, a gate. If I, through holding too much breath, not enough, or couldn't continue to hold my breath any longer for whatever reason, it automatically shut off in a nano second when I "fell" out of that parameter (gated) range. Hearing that made me feel a ton better about the role I played in potentially screwing the treatment up and accidentally radiating my neck, brain, foot, whatever. LOL.
A couple of good videos on YouTube are here:
"Deep Inspiration Breath Hold with VisionRT System" https://www.youtube.com/watch?v=JLWaTFHkCXA (I like this one because it shows exactly HOW the computer knows WHEN to shut off the radiation!)
"Deep Inspiration Breath Hold Technique" https://www.youtube.com/watch?v=n6jXkgLnNnY
"Deep Inspiratory Breath Hold (DIBH) Treatment" https://www.youtube.com/watch?v=oU8TE0fvqMgHopefully something here helps ya'll get through the rest of the RADs in your plan. Hang in there and keep kicking a**!
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1/32 Down. It went well. It was fast and easy. I just was a little clumsy with the logistics of changing into the gown, waiting in the patients (and partners), waiting room with my clothes and purse. Then gathering it all up and changing back after, and then into the elevator in a matter of minutes. It felt like a welcome whirlwind. I will be going to all my treatments alone, which is perfectly fine with me. We are having some health issues with my husband, so he is better not just being in the waiting room during my quick treatment. I’ll get used to the routine.
I got home and although my skin wasn’t red, or painful, or even reflective of any insult, I slathered it with Aquaphor ointment. I also have aloe and other creams to apply to prevent any trouble as I get further into my treatment.
So far, so good. Thanks so much for the positive thoughts and messages. We all are strong and fierce and can get through this. Love to you all.
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