Starting Radiation December 2020 group
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Hi Everyone: So far, so good for me. I think I've had 9 or 10 out of 30??? I can't remember how many treatments I am having--is that my fuzzy brain from the treatment?? And I am impressed that CRBMWGS knows what kind of machine is being used! If they told me, I don't remember that either! And I am grouchy and more emotional. Otherwise...things are OK so far. Some mild tenderness, especially around the nipple, but no obvious rash or skin issue. TwoforOne--that is a lot of rescheduling! That would drive me [even more]crazy! I had one appt rescheduled because the machine was down, and that was annoying enough. My place doesn't have appts on the weekends, so they are just tacking the missed appt on to the end of my treatment. I end somewhere around the end of January. Don't ask me how many boost appts I have because I don't remember
But I am trying to eat well, exercise , meditate and not over-react to things. Hope you all are coping well during this crazy holiday time.
Anyone bringing a gift to the folks at their radiation center for the holidays? If it wasn't for COVID I'd definitely bring a gift basket... I may bring a package of individually wrapped chocolates.
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Mama2Fourkiddos, unfortunately I did ask yesterday and the only tech in the room refused to help saying “I had surgery and haven’t been cleared to lift yet”. Today she didn’t even say anything...just walked away. Tomorrow I’m just going to lay there until they get someone. She shouldn’t be in the room if she can’t cant do her job, or at the very least should have someone’s to lift for her.
CRS, thanks! I went to visit my sister and feel a little better...just mildly miffed now lol!
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blusteryday - that's so weird! Our facility has an electric grab bar. It can be lowered for the patient to hang on to & then remote controlled to help pull up. The staff only has to guide the pt. Our health facilities all have a "no lift" policy to protect staff as too many were having to go on sick leave due to back injuries so all rooms are equipped with hoists and slings and lifts..... I'm sorry your facility is so unhelpful. It really is not ok to not have provisions to provide assistance.
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Well now I'm irritated for you BlusteryDay! The tech should be on light duty work if she's not cleared to lift after surgery. I hope you have better luck tomorrow with getting some help!
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Got annoyed today. I feel like the doctors don't want to provide any more information than they absolutely must. It was nothing too important, but I asked about a "simulation" that was on the printed out schedule of treatments they gave me. I was wondering if the date would be changed because I'm a day behind due to the equipment being down. Turns out it's something for getting me set up for boost treatments. You all have been talking about boosts, but I though I just wasn't going to have them since it hadn't been mentioned. Turns out I'm not having 21 hypofractionated whole breast, I'm having 16 and then 5 boosts. While it doesn't make any real difference in my life, I'm don't like that no one bothered to tell me this.
I have filled out so many forms (for the MO, the surgeon, the RO) and they all ask what level of information I want to be given, choices being just the basics, a fuller explanation, or all details. I always indicate that I want everything, and they keep not giving it to me (I actually changed MOs because I got so annoyed at the pieces of info he withheld - again, nothing super important in terms of treatment decisions, but things I still wanted to know).
Still, 12 down, 9 to go, and my skin and energy levels are still fine, it's only my mood that is suffering (not that I'm a ray of sunshine even under normal circumstances). However, they did put me on the scale today for the first time in a while and I'm up a pound and a half in about a month . . . guess it's time to stop eating ice cream every night.
Crsharper - are they really talking about removing your ovaries if you don't tolerate Tamoxifen? I had been given the option of Tamoxifen or else something (I don't recall exactly what) that would cause "ovarian suppression" taken with an aromotase inhibitor. My MO recommended trying Tamoxifen first, but the Dr. I got a second opinion from suggested the opposite (but said it's fine to try either method and switch if the side effects are too bad). I hope you don't have to go the surgery route - we are all dealing with enough crap as it is!
On the plus side, I am now officially on vacation from work for 2 weeks - I was barely doing anything productive anyhow, but now I can be unproductive and also not feel guilty!
-Rachel
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TwoForOneSpecial - It is REALLY frustrating trying to get all the information you can, but being limited in what is shared. I knew about my simulation, but was shocked to find out that I would be changing positions and having a different type of radiation. I even recorded the conversation with my RO and listened to it again to ensure I didn't "miss" the information. MD Anderson has been great in giving lots of written detail on each procedure, however it's the small details for me that seem to make the difference. I feel like I shouldn't have to ask a ton of questions to get some of the basic answers.
Mysticmint - I'm a dork...I asked them about the machine and asked them to give me a demo of how it works. The techs were really accommodating and showed me how it is positioned for my treatments and let me record myself as well. I have the same tenderness around my nipple and believe it may be from slight swelling; almost feels like monthly PMS breast tenderness for me. I was thinking about bringing the techs a gift as well - however was worried that with COVID, food may not be consummed.
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BlusteryDay - So much for my theory of it being machine related if we are on the same machine. Wonder if maybe it's because I didn't have any lymph nodes removed so perhaps I don't have the same amount of treatment area? I'm also in the prone position laying face down...not sure if that matters. Today I'm on 14 of 22 and still no skin issues and thankfully no fatigue or grumpiness. As for your techs, that is NOT ok. Whether you are in pain or perhaps dizzy or whatever, they should be there to assist you. I'm the person that rushes in and gets on the table as quickly as possibly because I want to get in and out. My best time so far has been 4:10 seconds, but I'm trying to get it under 4 minutes! It's become my own game to keep my mind occupied and to be mindful of all the other ladies in the waiting area that want to be done and on their way home. I'm the first appointment after their lunch break, so I want to make sure I don't put anyone behind schedule.
I am also curious why you are doing the breath hold. My girlfriend had to do that with her treatment and when I asked my RO why I wasn't, he said that normally that is used when you are treating the left breast because it moves the heart away from the treatment area when you take a deep breath. Perhaps they are doing it from a precautionary standpoint since they are treating you in the supine position and they don't want the radiation to impact your lungs/heart as much?And reading through this thread, it seems a number of us received a diagnosis after turning 50. That isn't much of a mid-century birthday gift! May we all have these treatments do what they need to do so we can have it be a once and done thing. Sending love, light and healing vibes to you all!
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Thank you, everyone, for the kind words. Today went better...the young woman was not anywhere near the room i was in today so that was wonderful. The downside is, I haven’t slept well for two nights now because of the pain under my arm where I have “wet desquemation” (peeling). My chest hurts and itches, too, and after applying aquaphor liberally yesterday, one of my sticker markers slid last night after my shower. I had to go through the verification process all over again this morning...new marks, new stickers. I kept apologizing and they kept apologizing...lol! I was so thankful I had some of my “old” team back.
Today was boost 3 of 7 and day 18 of 22 total. I’m so thankful I can see the light at the end of the tunnel on radiation.
crnwmgs, your comment about timing yourself made me laugh! I love it!
TwoForOne- I’m not one for surprises, either, and want to know everything happening. They didn’t tell me I’d be there longer for my boost setup, either...
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Blustery Day: Glad that that you didn't have to deal with the "B team" today. Sorry you have to deal with such discomfort, both physically and emotionally. Your boost will soon be over...and the rest of us are right behind you!
And yes, I too wish these doctors/health profs would be more informative. My plastic surgeon, who does great technical work, didn't even give me any detailed instructions about what to expect with recovery. They may have seen 100s or 1000s of patients, but it is our first time!
Hang in there everyone!
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Glad the day was better for you BlusteryDay...hope tomorrow is too! Not fun about the peeling under your arm though...I'm sure that doesn't feel good at all
Do most of you ladies have sticker markers or tattoos? I wasn't given an option and I have tattoos. I wonder if it's the length of your treatment program that dictates that.
So this radiation rash that some of you have experienced...when did that start for you and what does it look like? I met with my RO for our weekly check up this morning and my skin fine, but I looked at it this afternoon and I've got red almost like pimples all over my upper chest...I haven't undressed to see if they continue down. They don't appear to be itchy.
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Mama2FourKiddos - I look like I got into a fight with a Sharpie and clear tape. I have six marks on my back and about ten on my breast and lower rib cage. I think it depends on your positioning and how they are able to line you up for your treatment. When they told me I would be on my side for my boost treatments, they added a bunch more based on the new position I would be in.
BlusteryDay - Glad today was better!
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I have tattoos. I had 4 from 2018 and they added 2 more this time. I don't mind them.
just reminded me of this xkcd cartoon. The cartoonist's wife is 10 yrs out from stage III bc
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Communication is so important! In fact, this is why I chose the MO I did (after I ditched the first one). He has an amazing personal story of having survived what was initially diagnosed as an untreatable terminal cancer when he was a freshman in college. He's written about his experience extensively (https://trevorbaylissmd.com/), and how it inspired him to become a doctor, and to focus on good communication with patients. He has been great, it's just all the other doctors I've had issues with...
Mama2 - I have tatoos, no option given. I'm not thrilled with them, but they're not really a big deal. Probably no one will ever notice if I don't point them out, but I definitely notice the one that's front and center every time I look in the mirror. That one will be visible if I wear anything low cut. It's certainly possible that people will always think I've bumped myself with a ballpoint pen, or something like that.
I just checked myself out again and still no real redness or rash. I'm starting to get hopeful that maybe I'll be lucky and not have any reaction, but still 8 treatments to go so there's still time. Two more days this week, then 3 days off (honestly, I wish I could just go on the holidays and get it over with sooner, but that's not an option).
Hope you're all feeling good, and have something nice planned for the holidays!
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moth: Love the cartoon. I needed that one today!
Mama: my rash started really early on...I think it was around treatment 6 or 7. It was really itchy and a lot of bumps.I have three tattoos and stickers all over me. I cannot wait to take them off. Now, when I switched to the boosts, I got to take all the stickers off my back, which was nice.
Hope you ladies are all keeping well.
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Hahaha, moth that's great!
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Man oh man y’all have been busy tonight!!
TwoForOne the MO mentioned that I could take something that would force me into menopause but it’s a once a month shot in your stomach and most ladies my age (50) who have already had their kids choose to remove ovaries because it’s actually easier! I’m just hoping I tolerate Tamoxifen and don’t have to worry about it!!
MOTH that cartoon is awesome!!
I have 5 tattoos on my back since I lay on my stomach. Three of them they didn’t really give a choice and two of them they said I could do either so I told them to go ahead and do the tattoos I already have three what’s two more! I have a ton of moles on my back so I can’t even find them lol. I have 4 “X”s and stickers on the side of my left boob.
I had that small rash that looked like a bunch of tiny dots since day two but always gone by the morning and never itched.
Today everything changed...😭😭😭 I am red and itching like crazy on my chest. I had a little scar from where I had a mole removed 20 years ago and it’s driving me crazy bright red and itchy. I started putting hydrocortisone today. It makes me really nervous if it’s already bothering me and I’ve only had 11 of 33 treatments. I’m glad to have Christmas off so my skin will have time to rest
Blusteryday did your RO say she could give you the silver cream? I can’t remember what it’s called exactly but I’ve heard others talk about it. My RO said if I got “wet peeling” she would give me a cream.
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CRS, just sharing, I was also really itchy. My doctor said I could use the kenalog cream I had from chemo rash and it cleared it up very quickly. The best part is that it stopped the itching on contact. I’m sure every doctor is different, but this helped a lot for me. It’s prescription only, but at this point of the year, guessing I’m not the only one who hit their annual out of pocket max.
One thing I keep forgetting to ask. Is anyone else having a tough time sleeping? My insomnia is back so strong. Hoping over Christmas I can get a good night of sleeping or two. Just wondering if anyone else is having the same.
Thanks, ladies. Having you to share this has been such a help. I only wish I would’ve found this site back in May when I was diagnosed. Thanks
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CRS- They gave me a bag full of wound hydrogel packs. I put one under my arm last night and slept so well! I can’t remember what the brand name is...Cool Magic, I think.
Moth, did you see the cartoon he drew when she made it to the 10yr mark? 😭😭
I’m at the clinic for treatment..just 3 left after this and it’s going to be tough talking myself into coming back LOL!
Oh, and I have stickers, markers, and 4 tattoos... and I’ll be so HAPPY when I get to remove all of them!
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Blustery day, you are almost at the finish line! Congratulations
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Thanks for all of the info about your stickers/tattoos/marks! We're all so different with certain aspects of our treatment...it's interesting to compare.
BlusteryDay - glad you slept better last night with the cooling pack under your arm! You're almost to the end!!
Crsharper - Oh no! Sorry to hear about your skin problems! I'm dreading the day! I hope the cortisone helps or the doctor can give you something else. My red bumps are few and far between today, so must not be radiation related. Maybe I'm just breaking out for a PMS related issue 🙄
Poppy90 - yes to the sleeping problems!! I thought they were because I'm taking Tamoxifen, but maybe it's the radiation too. I take forever to fall asleep and can only stay asleep for an hour or 2 and then wake up to struggle back to sleep again. I haven't slept like that since I had newborns 😴
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Poppy and Mama2Four - the sleep issues are so real! I’m the same way, exhausted but wide awake, only sleeping a few hours at a time. I drove home today and am SO looking forward to sleeping in my bed tonight!
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blusteryday Thank goodness for the cooling packs!!
I’m still itchy and red. The hydrocortisone seems to be working. Poppy I will ask about that medicine. I’m supposed to have my weekly appt tomorrow but since it’s Christmas Eve I don’t think I’m going to see her tomorrow.
I can’t sleep either! I don’t understand why! I thought part of the problem was I’ve been drinking too much caffeine. I’ve been taking melatonin that helps but it makes me tired in the morning. Ugh. I’ve been dreading the tomaxifen because I knew it would make it hard to sleep. Wasn’t expecting the radiation to make me tired.
Happy Christmas Eve Eve!!
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Happy Christmas Eve Eve to you too, CRS. It sure is a nostalgic time of the year and hitting extra hard now. Hope that you’re all keeping well. Thanks for the quick feedback on the insomnia. It’s somehow really helpful to know you’re not alone. Thank you ladies. I hope even after everyone’s radiation is over we can keep in touch.
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It does really help to know you guys understand and we're all going through the same thing. Sometimes I'll "complain" to others about the tiredness or frustration at traveling back and forth to an appointment every day and no one gets it or just dismisses like it's nothing. We'll you ladies know it's something, so I appreciate the camaraderie we've developed 😀
I'm happy for the 3 days off and the break in routine. I did bring my radiation team a treat today. I know some of you mentioned you might. I wasn't sure if they would take it our not and I asked before if they could. It was a bag of individually wrapped peppermint bark packets. They were happy to take it...I was ever so slightly hoping they wouldn't as I love peppermint bark 😉
I hope you all have a Merry Christmas, if you celebrate it...if you don't then enjoy the rest and downtime of a long weekend!!
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CRBM, today was the last day! Thank you so much for remembering. I cried like a baby....I think the last 9 months and trying to stay strong finally came out today all through my eyeballs. But all good tears.
I hope you all have a peaceful break from treatment. And I hope you don’t mind that I’m still staying in this group. Because I really dig you ladies. A very Merry Christmas to those who celebrate and a Happy New Year to us all! I’m so glad I found you all and grateful to have you in my life. Yes, I am sappy today :
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January 5th will be here soon, and I will be virtually ringing that bell with you! What’s funny is I had to stop by my MO after to pick something up and my favorite nurse happened to be at the desk. She saw my diploma and ran out to hug me. Was so lucky to have two teams to celebrate with today. I wish I was younger. I would go to nursing school in a heartbeat. I wish I could have an impact on others like my care team has had on me. Such special people.
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I can't believe the $*%*@ machine is down again! I was literally putting on my shoes to go this morning when they called. They rescheduled me for noon, then called later to say it wasn't going to happen. So now I have to go on Sunday - initially they said at 8:30 AM. Instead of being my usual passive self I actually said that wouldn't work, so I got 10:00 which is much better. I'm usually up early and could probably do the earlier appointment, but on the off chance that I sleep past 7 I don't want to be rushed to get there.
I guess good that they can do Sunday, otherwise it would be 4 days off in a row, which they said isn't good to do. Honestly, I don't have anything else to do, I just hate having everything changed around constantly.
Last night I had a dream that I looked in the mirror and my whole chest from bellybutton up was covered in horrible red itchy bumps, both sides. I was relieved when I woke up and took a look to find that it was not true. I just have a little redness under my boob, right where the elastic on my bra is (based on something I read on the message board I ordered some of the "genie bras" and I may never go back to a "real" one after this - they are so comfortable!) Decided to try going braless today . . . haven't done that since I was about 14. So far so good.
At least skipping the appointment today is giving me extra baking time - I'm meeting some friends this afternoon for a dessert exchange, so now I'm not feeling stressed about getting everything done (at least not yet). I made "cocoa blocks", which are basically hot chocolate on a stick (stir into hot milk) and homemade marshmallows, peppermint patties, and am now making some almond cookies. Yum, yum, and yum... We did the same sort of exchange at Thanksgiving and it was really fun, and great to have a huge variety of sweets - more than I would make just for the 4 of us.
Hope you all have an enjoyable holiday!
-Rachel
p.s. - Congrats to everyone finishing up! I am not aware that we have a bell, or get a certificate, or anything . . . maybe, but I haven't seen/heard it. I go to a small town hospital and barely even see anyone in the waiting room. I picture my last day just being in and out as usual.
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What a Christmas gift!!! I can only imagine the release you must have felt.