Starting Radiation October 2021
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Ivy- I asked about other creams, but she said I need to try this first. Well, if I want to get something else I will! I told my mom last night that I will not be attending the wedding next month. I said that I need to make the best choice for ME. She was disappointed but understanding. I also talked with former supervisor(now close friend) and current supervisor to go over my work schedule when treatments start. They were both great and on board with whatever I need. So glad to hear your skin is still hanging in there…you are SO close!! I also appreciate you sticking with us, your advice and support mean so much!
LW- my start date is 10/13, last date is 11/9. I’m also a bit nervous about the breath holds, hope I can do it. Your menopause story makes me feel better…I was thinking this was too good to be true!
Lisa- welcome to the group…none of us want to be here, but at least we can commiserate together! Good luck at your 1st session tmw, hope it goes smoothly for you.
Sweet dreams all!
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AKlynna--you'll be an old hand at this before you know it! The breath holds aren't that big a deal; usually they are pretty short, like 5 to 10 seconds. Only a few times have I had to hold breath for over 20 seconds, but if I'm not expecting a long hold I get caught off guard.
Tomorrow my first week will be done!! Woohoo! So far I've not had any effects; my skin doesn't look or feel any different but I'm sure that will change. A couple of ladies at the radiology waiting area said they barely have pink skin after 4 weeks so that made me feel a little better.
I had my "weekly see" appointment with the doctor today and I really like her very much. She was very thorough in describing my plan and showed me all the images they used to develop it. The nurse gave me some Metaplex** bandage stuff to use later in case I have a tender spot (like under the arm) and a tube of some kind of cream. I still don't know how I'll use cream around all the markings and stickers!
We are almost done with this week, y'all!!
** SORRY!! That should be "Mepilex". Duh!!
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Hi Peter! Nicole will be in my thoughts!
AKlynna - I'm sorry you had to decline going to the wedding but you really don't know what you'll be feeling. I thought I had hit the worst part of it until last night. OMG!! I was miserable, immense pain in the armpit, my scar was on fire, which is weird because my breasts are numb. Maybe it's the nerves?! I don't know! I was/and still am, feeling ill, very nauseous. I did not want to go today, my son had to talk me into it. I think it's just taken its toll on me emotionally. I'm so over it! Again, and I know I keep repeating this this, it's tolerable, but it's very bothersome. It's different. So, I don't say any of this to scare you, everyone is different and my body has been through hell for over a year and half now without a break.
And the breath holds, they really aren't difficult. Like LW said, the most is 20-30 seconds.
LW- one more day to go and then the weekend break! I'm looking forward to it! That's great that you don't have any SE's!! There's a lady and a gentleman who both really haven't had any SE's and started at the same time I did, so I hope and pray it stays the same or vey minimal.
I was really concerned about my implant, but from what I can see there's been no change; I think it's a good thing. From the beginning the RO told me he'd be keeping watch on it and make adjustments if necessary, but luckily nada. I really like my RO too. On the August thread it was an ongoing joke because I mentioned he looked like George Clooney, which he does.
Metaplex, is that like a patch/bandage with gel on it?
I asked about the bolus and it is exactly what I thought, but I have to have mine on every single treatment.
I'll check in with you all later!
Have a great day!
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Awwww, Serendipity! I'm so sorry you are feeling so awful.
You are so close to being DONE with this! Bless your sweet heart; I hope it gets better soon.Sorry I misspelled "Mepilex"... duh. It's some kind of foam "dressing" that can be applied without adhesive to the skin to protect it. It can be peeled off and re-applied, and I'm hoping it will work to keep my skin-on-skin discomfort minimal in the armpit when the time comes.
Wow, you've had bolus EVERY time??? I'm only having 10... every other treatment for 2 weeks. Then some "boosts" the last week, I assume on the scar.
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So tomorrow I will be a third of the way through treatment. The bolus definitely is the part I least like because the skin feels hyper heated for hours afterwards. But it also appears to be doing its job which is to ensure that the skin has adequate treatment. I want very much to try to avoid residual cancer popping up in my scar or chest wall at some future date. I am doing exercise to maintain ROM in my shoulder like crazy and I have a feeling I will be doing this forever. My treatment is left sided so I worried hugely about my heart--but the dosage is in the neighborhood of 1.97Gy so I am a happy camper.
LW422--I was shocked that you had 32 nodes removed. Was that SOP for IBC?
And as far as random concerns, I find myself wondering how up to date the machines are as far as software/calibration... But I have asked so many questions that people were clearly not prepared for I kept that one to myself.
I also asked why it is important to apply creams when radiation "burns" are basically from the inside out. Was told keeping a moisture barrier helps with discomfort but am not under the impression it speeds healing.
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Hi Ruby. Wow, a third of the way done... good for you! Yes, I had two levels of nodes removed because of IBC Standard of Care. It turned out to be 32 nodes because of my anatomy; my surgeon said everyone is different... some people have a few nodes in the 2 levels and some of us have a bunch.
I asked my RO today about creams and what they recommend; she asked if I was having any discomfort. The nurse gave me a tube of some stuff but they didn't seem to think I needed it unless the radiated skin needs soothing. The thread "A rad onc weighs in on radiation "burns" has a lot of good info IMO.
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Hello all! It's Friday at last, and I had my treatment so now I can kick back till Monday. I struck up a conversation with a woman in the waiting area today; she has had 4 weeks of rads and told me she is "burned up."
It made me so sad for her; she told the techs that she couldn't do it anymore. Honestly it scared me but I was scared of chemo and then scared of surgery... so this is just more of the same. I'm feeling kind of weird since yesterday; not really "sick" but not great. It's kind of a shaky feeling and a tiny bit of nausea. Not sure if this is radiation-induced or all in my head, but hopefully it will go away over the weekend.
Check in and let us know how you're doing!
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LW - YAY for Friday!
I agree with the woman in the waiting dreamy skin is definitely burnt. I think I said in the August thread, but there was a day earlier this week that I wanted to call it quits. My son had to talk me into going cause I've had it. The RO warned me at my mapping session that I could feel this way and here it is. One day left and I feel the worst I have throughout rads, I guess I shouldn't complain. Like you LW, I was scared of chemo and surgery too and I got through it and I will get through this too. Its just taken its toll on me at the moment and it's not permanent. I hope you feel better.
I had four nodes removed last year and I feel like a big baby because that's been the most bothersome area for me since surgery. I can't imagine having 32 removed!
Ruby - as mentioned before, I've had the bolus everyday; about week three was when the "heat" really kicked in. This week I could actually feel the area being radiated when the bolus was place on me. It didn't hurt, but could feel the bolus heating up and the heat penetrating my skin and could feel the exit point in my back.Needless to say my back is burnt too.
Your post had me questioning the machine today too, lol. I decided not to ask anymore questions, I'm too far along now. You can def tell the difference in technology.
Hope you all have a great day.
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Serendipity-- ONE DAY LEFT... OMG!!! You are at the finish line, girl. I hope you feel better over the weekend.
I don't know if the number of nodes removed makes much difference in the pain and discomfort from surgery. The surgeon still cuts the nerves and stuff in the axilla, so it's a miserable thing for all of us whether we had one node removed or 50.
The thing that really annoys me is that out of 32 nodes, NONE OF THEM were cancerous.
So my odds of getting lymphedema increased by a million percent for nothing. Ugh. 0 -
LW - I cannot wait for Monday morning to come and go.
I woke up feeling like I have a terrible hangover. Talk about feeing shitty! UGH!!! I'm so over it! My skin is starting to peel, and not just in one spot, all over. I cringed while putting on cream this morning.
Anybody have any fun plans for the weekend?
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Serendipity--I'm so sorry you are feeling so bad. I will be happy when you're done and healed. Do you have stickers and markings or did your RO use tatoos? I simply can't figure out how to put any cream or lotion on myself and avoid the stupid marks/tape/stickers. I asked the tech yesterday how they will get those stickers off when treatment is done and she said "we don't take them off." So they just let us deal with that??
I'm still feeling OK; honestly my mastectomy/lymph node surgery recovery is my issue.
Under my arm feels tight and horrible, and like I have a thick "sling" of something under there or like I'm wearing a bra that's far too tight, even when I'm not wearing one at all. It still feels raw and sore, sticky and TIGHT under my arm, though from the outside appearance it has healed well and looks good. (Or as good as a missing boob can look.)
I also have a lot of sensitivity and burning nerve pain, so I'm miserable most of the time and worried that the radiation will make me feel worse. Boo hoo, poor me.0 -
LW - I'm sorry you're in pain. Girl, you're entitled to boo hoo! All of us are. None of this crap is easy, as you very well know.
I struggle/ed with the exact same feeling/pain under my arm. I was, and still am squeamish to even touch the area. I was getting massages, cording and stretching in the armpit and it helped immensely. I was almost a year out from my BMX and two months out from my exchange when I started rads and things were finally starting to feel better. Unfortunately, I was instructed by my RO not to have any of that done during rads and now it feels worse then before. It's inflamed and the skin hurts just putting the cream on. It feels like I'm back to square one. I hope you don't experience this. Good thing is that it does get better according to others that I've spoken to, so there's hope. I'll be going back to PT for stretching and cording as soon as possible.
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I'm not starting radiation until November, but I wondered if anybody is receiving their rads in a prone position (laying on your stomach)? My RO informed me she would use this position for me and I was very happy to hear that. I'd love to hear from anyone who has experience with this. Thanks.
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Serendipity--thinking of you today and that LAST FREAKIN' RADIATION TREATMENT!!! Woohoo! I'm so thrilled for you to be done with this, and I hope that you are feeling a bit better. Hugs to you. I'm still doing my stretches since no one told me not to, but I'll probably need PT when rads are done.
Swimgal--sorry, I can't comment on the prone position but hopefully someone will see your post who can. You might try a forum search with keywords "prone" and "radiation" and see what pops up.
Hello to everyone currently undergoing treatment. I started week 2 today and so far, so good. I talked to a woman in the waiting area who is on week 3 and having that "lump in the throat" thing and she is so fatigued she could barely walk. Ugh, I just wish this stuff wasn't so hard on some people.
I always have to ask people in the waiting area how far along they are and whether they've had any bad SEs. I guess I want someone to tell me it's going to be OK!! Hope everyone has a good week.
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LW - thank you! Yes, I'm done! YAY! I was in so much pain last night that I had a meltdown. It's difficult having the weekends off to then have to go back. I'm just grateful to be finished with this. I was asked if I wanted to keep my blue! Brought it home with me, going to throw that thing in a bonfire!
Def keep doing the stretches it does help.The stretching that I referenced was actual stretching of the skin as part of the cording.
I prayed the entire time I was in there, for me, you and everyone that has and currently going through rads. This ish is no joke!!
I always asked others how they were feeling too. One lady who is a few days behind me is actually doing very well compared to me, just the "sunburn." And she was having both breasts and nodes radiated. She had had rads twenty years ago and said she healed just fine back then.It was good to hear that. Gave me hope.
You're into week two! Girl, you got this! It is going to be ok! My body has been through the ringer since April 2020, I didn't think I was going to get through it then. You had the AC&T so you know what I'm talking about. Again, all of this is doable. I had to remind myself every single day and especially this morning.
Today I feel the lump in the throat, but it's not too bothersome, I hope it stays that way and does not progress. What I did develop early on was a cough, that is bugging me. RO said it wasn't unusual as my lung may be feeling the rads.
I hope this week goes smooth for you and everyone else!
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LW422, Thanks. I'll try that.
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Serendipity--So happy for you to have crossed the finish line. It sounds like it has been brutal. But thank God we live in an age of miracles so to speak. I hope you will start to heal quickly.
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Thank you Rubytoos! This morning while staring at the machine, I was praying for a miracle that the cure for cancer be found and that whatever it is, may it not be so harsh on our bodies; that there no longer be the need for one to get sick to get better.
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Serendipity-Congrats on finishing radiation! I'm so happy for you to be DONE! Now it is time to heal, take good care of yourself.
Everyone else-Hang in there!
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Serendipity--thanks so much for your prayers and good wishes for all of us, and right back atcha! Here's hoping your recovery will be FAST and easy. Can you explain about keeping your "blue?" I don't know what that means.
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Nature - thank you!
LW - auto correct, lol, it was supposed to say bolus
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Serendipity--LOL! I thought I had missed a chapter in the "Cancer Terminology and Acronym Guide for Idiots."
I don't blame you for torching that stupid bolus!!
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Serendipity I agree--I also pray that the day will come when we don't have to take the slash and burn approach to eliminating cancer.
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Hope you are all having a relaxing evening! I'm not red yet, but I feel a slight lump in my throat when swallowing. Nothing major, but subtle. I did some juicing tonight, hope it helps.
Serendipity, are you doing better today?
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Nature - I had a rough day, but I figured it would happen. Very fatigued and can''t have anything touch the radiated skin, it'd very angry. I have a half dollar sized patch in my underarm that has peeled and the area is raw, along with several raw patches under my breast, those are painful. The RO's nurse gave me a bunch of Vaseline patches and they help. She also gave me some compression strips to cover the patches so that there's a barrier between the surgical bra and patch so it does not bunch or slide all over the place. I didn't like the feeling of Aquaphor early on, too greasy and messy, but I'll be using it going forward. I bought some Aquaphor spray today to help with the messiness. Thank you for asking.
hope the lump in your throat eases up. I felt it at the beginning too, but it went away, then had it again yesterday, nothing today. I did develop a cough week 2 and still have it, nothing that really bothers me though, other than being scared to cough in front of others in these times.
LW - LOL "Cancer Terminology and Acronym Guide for Idiots" too funny. I need one of those!
Hope everybody has a good night!
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Hello everyone,
Thank you for welcoming me to the group. Hope everyone is hanging in there! Had my fourth treatment this morning….should have been my fifth but the radiation computer system went down on Monday about a minute into my treatment and they couldn’t get it back up so I went home instead of waiting around and will have an additional treatment at the end. Anyone feel extra tired this early on?
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NatureYogi--glad to hear you're doing OK so far. How's the throat?
Serendipity--I hope you are better today. I'm surprised you're wearing a bra at this point! How do you like the Aquaphor spray? Is it as greasy as the cream?
Lisa--yes, I'm feeling pretty tired. Seems like I can barely hold my eyes open by 5 p.m.! I had #7 today.
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LW - I like the Aquaphor spray. It is just as greasy. I like that I don't have to rub it on my skin if I don't want to, It sprays on nicely. I'm now only wearing this "mesh" surgical bra so that the non-adhesive pads I put over the vaseline pads or over the aquaphor don't slide around. I'll be ditching as soon as the aquaphor is no longer needed.
I never got sleepy, but found that I was very tired all time and had a very hard time getting up in the mornings, I feel like a zombie.
Lisa - that happened towards the beginning with one of my sessions, the machine needed to be calibrated, but I was not skipping a session and waited. Last week my file wouldn't pull up in the computer, the tech asked if I wanted to go home, needless to say, I patiently waited. I was determined to make sure nothing changed my end date, lol.
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I had my surgery (lumpectomy with 4 LNs removed - no cancer in nodes) on 9/14. Have my radiation planning session set up for next Thurs, 10/21. Nervous about this whole thing as I still have a seroma and the RO told me that once you have radiation it "locks" it in and will never go own. I also read that a seroma can get infected and it can be life-threatening so not crazy about it staying there forever. But the BCS said who knows how long it would take to resolve.
I saw my BCS PA yesterday who did an ultrasound at my urging. She did one last week too and didn't measure, so don't know the change. She said it measured 1.8cm, @ 1/2 inch.
It's a catch-22 situation. Delay radiation beyond the recommended 4-6 weeks and hope the seroma resolves sometime soon, aspirate the seroma and hope it doesn't come back (RO said I would have to wait a week after aspiration to make sure it stayed stable), or just start radiation. The PA checked with the BCS who was in the office, and she said her recommendation would just to be to proceed with the radiation, not wait, and not aspirate.
She did call the RO and discuss. I hope I made the right decision. The RO oncologist said there was "no rush" to start radiation and a couple of weeks wouldn't matter, but it worries me going forward with this thing still there. Would it have been better to just delay the radiation a few weeks, which would mean I would be starting at 9 weeks vs 7 weeks?
Unfortunately, the RO is out at a conference the week of 10/24 so I can't have the planning appt that week, but that would have been ideal, as it would split the difference.
I believe the MO said ideally 4-8 weeks for radiation, but since he won't let me tape the meetings, I don't recall.
Anyone have any thoughts? The only study I can find is from 2016 that Dana Farber did and it said 4-6 weeks is optimal, and after 6 weeks recurrence in women 65+ goes up 19%.
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Macdebbie- I'm sorry I don't have any answers for you and I hope that someone here or another thread give you the answers you seek. None of this is easy to begin with, so it's understandable that you are nervous.
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