Starting Radiation December 2020 group
Comments
-
Just wanted to stop in and say hello and hope you’re all keeping well. 29/34for me...almost there!
0 -
Yay Poppy, the end is in sight!
I'm a third done & next Monday will be past the half way point - then I'll start counting down LOL. Since I'm treating a lung metastasis I have a fair bit of coughing from the inflammation in the area. Other than that, I'm tried. Also cranky. But that just might be December stress lol0 -
Hi! New to the board. I finished day 2/20 today. I am doing prone radiation on my left breast. I'm claustrophobic and the tiny face cradle (not open to the floor like a massage!) freaked me out at first but I'm getting used to it. I have a ton of anxiety about radiation and my skin falling apart, but have been using Miderm multiple times a day to prep.
I had a little complication with cellulitis this week - prob thanks to the large seroma I have, so I skipped a day and got a script for antibiotics. It's always something!!
It's been good to read about others' experiences - thank you!
0 -
Moth, thank you. Finishing Christmas Eve should be something I remember for a long time. I am also so tired and cranky that I am even annoying myself these days. I didn’t expect radiation to hit me so hard. I guess I thought I’d made it through chemo, that this would be less than it is.
I am so sorry that you’re dealing with mets. I wish there was something I could say other than my thoughts are with you. It may not be much, but it’s what we’ve got right now. We are actually very similar in age diagnosed and diagnosis. I am sure you have lots of support, but please know you’ve got me in your corner, too. And if you ever need a place to vent, I’m here.0 -
Hi everyone:
Is anyone else feeling foggy in the brain? There are so many things going on right now--major snow storm (I can get affected by change in weather/barometric pressure), holidays, pandemic --so it's hard to tease out what could be a side effect of the radiation. Today I seem to be forgetting the day, the procedure of the radiation (I almost took my pants off in the dressing room), having trouble word finding. Didn't have my appointment yesterday, not because of the snow, but because the machine went down. Add another day to my treatment now. I am also feeling more irritable and impatient, which I remember some people here mentioning.
Otherwise, I actually feel fine, and no skin issues yet.
Again, all of this could just be circumstantial and I am just hyper-focused on looking for treatment side effects.
I hope everyone is doing well!
0 -
mysticmint, yes on all of the above. Tired, grumpy, foggy and impatient. I’m a real joy to be around! My loss of words is so bad, my boss has rescheduled some important meetings until January. I don’t have the heart to tell her the side effects don’t go away immediately. I just wanted you to know you’re not alone. You’ve described me perfectly. I think I’ve said it before here, but I greatly underestimated the impact rads would have on me. Just went in thinking I was badass, I guess
And funny enough, the machine was down yesterday for me, too.
0 -
Hello! Just finished my first 5 treatment week (9/33) I am sooo tired. Like y'all said I don't know if it is life or radiation that is making me so tired. I have a very important meeting today at 4:00 that I told my boss there is no way I can do. It is basically a dog and pony show for us to present to the new CEO. I turned in all my numbers but I don't think at 4:00-6:00 on a Friday (my company is based in CO) I'm going to be at my best. That is really hard for me to admit I can't do something (big time people pleaser) but I know I'm going to feel terrible and tired!
My memory was shot before I got my cancer DX, I think peri-menopause. It's like I just woke up one day and couldn't remember S%$T. And I forget my words all the time...I hate it!!!
I noticed last night that my skin is definitely darker on the left side, not red yet but looks like it is getting a tan. My RO told me yesterday that I've got a little bit of cording on my left arm. Did any of you experience that? I only had 3 lymph nodes removed so I shouldn't have lymphedema issues, it's probably just a little clogged from the surgery. I knew that my left arm felt really tight when I raised it over my head and was getting tighter, I thought maybe it was the skin tightening from radiation but she said cording.
Hope everyone has a great weekend. Anyone going to try and venture out for any last minute shopping? I did all of my online this year. But I miss the stores so much. I may try and go out all masked up tomorrow for a little bit. Depends on my energy level!
0 -
Thanks so much, Poppy!! Nice to hear I'm not alone
0 -
Poppy -- It will be over before you know it!
0 -
crsharper, I am halfway through my radiation treatments and so far haven't experienced any fatigue. However, I do have a nice one breast tan going on.
Who the hell schedules a two hour meeting late on a Friday afternoon the week before Christmas? I think most everyone is mentally checked out! The rule in our office is don't schedule anything after Noon on a Friday if you want people to pay attention.0 -
CRS, good for you for not doing the meeting. Sometimes it’s so hard to put yourself first, but right now you have to. And stay safe at the mall. Promise me your not going to Lennox or Phipps...too many people there. Pick a nice quiet mall.
0 -
Poppy - thank you for your kind words. I really did not imagine I would have a metastatic recurrence. It's baffling to me how I ended up here but that's how things go sometimes.
Glad this week is over & I get a break. 7/15 done
0 -
crbmwgs I agree! Even though they are on MST, it is still 2:00 in the afternoon there!!
poppy definitely not Lenox or Phipps!! I've got to run over to Target at perimeter to do a curbside pickup for a gift that was only in stock at that Target...but probably not even going to go into that mall either...I mostly need a few stocking stuffers.
0 -
crbmwgs, I missed your good wishes. Thank you!
0 -
Curious if anyone has to switch position for their boost treatments. It appears I will be going from a prone position to lying on my left side. I had a re-simulation CT completed while lying in some type of a mold and they used a plate to compress my breast. I guess this will be my new position for the 7 boost treatments I will receive. Would have been nice to know beforehand.
0 -
I got a little cording after my surgery in Oct. Only had 2 nodes removed so I wasn't expecting any problems. If you Google "cording" you'll find some gentle exercises and massage techniques you can do to relieve it. I tried them and mine went away quickly. After experiencing it I can appreciate how uncomfortable it must be to have to hold your arm over your head!
Moth, my heart goes out to you. You've really been through the wringer with this.
Hearing about Lennox, Phipps and Perimeter recalls my old shopping haunts when I lived in Brookhaven and Dunwoody. I loved Atlanta at Christmas. The architecture and trees just seem right for the season. Southern California...not so much. HA!
I'm heading out for 2/15 this afternoon. Have a great weekend everyone!
Patty
0 -
I'm so glad the week is over and we all have the weekend to rest up a bit! 8 down, 22 to go for me. Maybe it's a bit too soon to start the countdown, but I can't wait! It's so overwhelming this time of the year as it is, but with all that we all are going through it just makes it more so. I'm feeling the grouchy and cranky right along with all of you. I'm not sure if it's just the radiation for me or the Tamoxifen I started a couple of weeks ago. That's kicking my butt too and I'm just a dragging today...
I hope you all have a good, restful, productive, last weekend before Christmas. Get some rest and treat yourself to something special, whatever special is to you. We're back at it next week ladies...a 4-day week for most of us probably. You're all in my thoughts!!
0 -
Hello everyone! This last week was busy, and I haven’t been on the board so I’m trying to catch up. I finished my whole breast on Friday and start Boost today. It’ll be my first of 7. I’ve developed radiation dermatitis...my skin has a horrible, bumpy, itchy, red mess on it spanning into my armpit. I’m still using calendula and aquaphor and have added cortisone now.
Has anyone else developed the itchy rash? What are y’all using for it?
0 -
BlusteryDay, How many days do you get off between treatments? I start my series of seven boosts on Christmas eve.
0 -
Blustery Day, I had radiation rash as well. It wasn’t fun. I had a prescription cream left over from chemo rash (I’ve got very sensitive skin). My RO said it was a perfect cream to use and it did clear up the rash. I would check with your RO. I also switched from Aquaphor. I felt that was irritating my skin. That has helped and the rash hasn’t come back. My RO recommended a cream called rejuvaskin. They have a special cream for radiation. It’s not cheap, but has helped a lot. I was bright red and very itchy to the point that I couldn’t sleep. This has helped a lot. Hope you find something that works well for you.
CRBM, I also switched onto my back for the boosts. I had the first boost Friday. We are almost there!
Hoping all you great ladies have a peaceful week.
0 -
Blusteryday and Poppy, how many treatments did you have before you go the rash? My skin looks good and it makes me nervous to think everything is going to be ok. I've only had 9 treatments though. I think y'all both mentioned that you are having 7 boost treatments, I'm having 5. It's so interesting to me how different we all are! I'm having 28 whole breast and 5 boost.
Mama mentioned she is on Tamoxifen already. I'm no starting mine until I'm done with radiation. I already have it, but she said to start it the day after my last treatment. Has everyone else started their Hormone therapy or waiting until after radiation?
msmpatty, I agree Atlanta is such a pretty city and especially pretty at the holidays. I love holiday shopping!! I do really miss it this year!
Hope everyone is having a great weekend!!
0 -
I'm also interested to hear when some of you started to have a real skin reaction. I'm just over halfway done - 11/21 - and no problems so far. Last few treatments I've noticed some redness, but it's gone by the next morning.
My schedule has gotten so messed up - on Wednesday they called to say the machine was down don't come for my 9:30 appt. Then they called at noon to say it was back up, come at 4:30 PM. Then at 3:30 they called again to say it was down again (lucky they caught me while I was home).
On Thursday I called to cancel because of weather, and they said the power was down anyhow. They called later to say power was back up, come at 2:30. Then they called again to say the machine was down again.
Friday was back to normal, and they asked me to come Saturday to make up a session. That was fine, as I just want to get it over with.
Today (Sunday) they have already called to say the machine is down again, don't come Monday morning. They moved me to afternoon, but at this rate I won't be surprised if they cancel again.
Also interested to hear of everyone's different plans for Tamoxifen. I don't even see the MO again until a month after finishing radiation, so I imagine will start soon after that. Not looking forward to it...
I just want to be done already and this gets so frustrating. I'm crabby anyhow, and stretching out the treatment is not making me feel any better.
That said, I am grateful that crabbiness is the worst side effect so far. Not too tired, not itchy yet, so I shouldn't complain too much.
Hope you've all been able to relax over the weekend and do something fun (or at least watch a good show - open for suggestions if you have any).
-Rachel
0 -
crsharper- I've had 8 treatments and my skin is just a little darker, but fine. My nipple is very sensitive and kind of swollen. No rash...I put aquaphor on each night and Remedy Phytoplex on during the day after my treatment. I had seen my MO on 11/19, which is when he prescribed the tamoxifen. He told me to start taking it as soon as it was filled. I questioned it thinking I didn't want tamoxifen side effects and radiation side effects at the same time. He said I shouldn't have side effects for a few months since I'm younger, which I thought odd. I started taking it on 12/2 and had a headache and nausea for 2 days. Lower backache for a couple of days and still here and there. I'm extremely moody and short tempered (which I get angry at myself for) and I'm having a lot of trouble falling asleep and staying asleep, which I've never had before. But since I started radiation 12/8, I'm not sure what side effects are from that. I guess I'll see which ones stay around when I'm done. I have another MO appointment on 1/19 which I'm supposed to decide if I want to have an oophrectomy or ovarian suppression shots by then. I will probably never feel like I used to again and never know where the side effects are really coming from. But it could be worse, I should not complain in the least. At least I kiddos and fertility isn't an issue, like it is for some younger.
BlusteryDay...I'm sorry about your rash
How many treatments in did you develop it?0 -
TwoForOne - I'm also over halfway done and haven't had any skin issues 12 of 22. I haven't been as good as should at applying the aloe and aquaphor, probably because I haven't felt like my skin was really out of sorts.
I'm curious if maybe skin reactions are different based on the machine types and dosage. I'm being treated on a Varian TrueBeam and from the time the techs leave the room until the time they return it's only about three minutes. I've been told my boost treatments will be even shorter.0 -
Mama From any of my friends that are on Tamoxifien I've heard mixed reviews on side effects or not. How old are you if you don't mind me asking? I just turned 50, but am not menopausal yet. Since my Oncotype score was so low my MO said no need to have my ovaries removed. She said if for some reason I don't tolerate the Tamoxifien at all she would remove ovaries and then could try the aromatase inhibitors. I've heard others say their nipple got really sensitive. I'm not having that issue. My MO did say she sucpecst I will have a some skin issues since my breasts are so dense and I'm going for a longer time. But we will see!
TwoForOne You have been though the ringer on your schedule changes! Sounds like you are taking it in stride! Good for you!!
0 -
crsharper - I'm 40. I think it's a combination of my age (because I'm so far out from going into menopause) and that my I'm ER+/PR+ at 100% for both
0 -
My skin reactions really kicked up on day 12 of 15 whole breast, hypofractionated on the Varian Trubeam machine. Thanks for all of the recommendations for creams and preps. I started boost 1 of 7 today and it was so fast...it took longer for my doc to verify than for the treatment itself. Interestingly, I’m still doing breath hold for the boost, which is so weird to me! I am going to ask why at my next appointment.
Tamoxifen- my MO said he will test my hormones after rads, to determine which estrogen blocker he will recommend. Not looking forward to taking them, but I’ll do everything possible to decrease recurrence risk.
0 -
Today was boost 2/7 and I think I’ve reached my grumpy point. My “boost team” is a couple of young women who are in such a hurry that they can’t even help me sit up after the session. I had back surgery 20yrs ago and have degenerative disc disease in my lower back...sitting up from flat is difficult and painful. Tomorrow, I’ll be treating them as they are treating me and if they want me to move along, they are going to be helping me. 🤬
I think I’ve just reached the point that I’m sick of being touched, messed with, in pain, itching...I just want to go home and be left alone.
0 -
I'm sorry you didn't have a good experience today with your radiation techs, BlusteryDay. I do find getting treatment every day to be a very rushed experience and they're churning the patients through quickly. Where I go, I think it's because they don't want people in the small waiting room long, so its hurry, hurry, hurry. Do the techs know you need a hand sitting up? I actually had the opposite experience. When I first went they all descended upon me helping me untie my robe and get my arm out and down/up from the table. I had to politely tell them, I'm ok, I got this part by myself. I'm not big on getting touched by people lol. Anyway, they laughed and apologized and said most people they have come through need the extra help. Now they don't assist me at all, which I appreciate. Maybe it's just as simple as that. The person that's getting treatment before you is a "if you value your life, don't you dare help me untie this stupid, drafty gown" type of person, like me
Just mention it tomorrow...I bet they're not trying to be inconsiderate on purpose. This grumpyiness lately that we're all experiencing is the pits. I have had to bite my tongue several times today already and it makes me mad and sad I'm like this 
0 -
Big Virtual Hugs Blusteryday!!!
I don't know if that is the hug emoji but looks close enough lol!0
