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Starting Radiation December 2020 group

No one else has started this group yet, so here I am. Finally had my first of 21 treatments today. Really felt like no big deal. However, now I'm back home and feeling very drained. I'm sure it's psychological, not physical, but still.

I'm really bummed that by starting today, and due to winter holidays, my very last treatment day will be first week of January. It would have felt really good to finish in 2020 and be done with it. Not only that, but I'm waiting to see how much it will cost me as my insurance plan has a big yearly deductible. Of course I met the deductible this year due to lots of cancer treatment, but it will reset on January 1. It probably doesn't matter since I will at the very least have an MRI every year which means I'll probably meet the deductible every year, but still an annoying way to start out 2021.

Also this dragged on so long that half of my treatments will take place during my employer's "winter shutdown" - paid days off. Since I get paid time for treatment, it's too bad that I have to go throughout what should be vacation time.

I know I'm supposed to be feeling grateful that my diagnosis isn't worse (stage 1, no chemo necessary), and that I have a job, paid time off, good insurance, but I'm just feeling kind of down right now.

Anyone else starting treatment in December?

Rachel


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Comments

  • blusteryday
    blusteryday Member Posts: 49

    Hey! I started on Monday 11/30 and finished 5 of my 15 hypofractionated (whole breast) and then will have 8 boosts at the end. My last therapy day is 12/31. I definitely understand about the fatigue...I am wondering if mine is just “nearing the end of the marathon” fatigue? I’m finding that I’m mentally and emotionally drained. I’m grateful, like you, to just be alive, have good coverage, etc but I honestly think Radiation is more mentally draining than chemo, for me. I have trouble explaining why...but it’s just “REAL”, where throughout chemo I could distract myself with movies and knitting. It’s impossible to do those activities in the machine.

    My skin is great, no changes. I’m using calendula twice a day per my RO instructions. I’ve noticed my scar line is actually softer when using the calendula...bonus?

    I’m praying this will be all over “before we know it.” My rad schedule at Christmas has me doing rads for a week and a half straight, so I get a couple of days “off”. How is yours?

    Sending you encouraging thoughts and prayers!!

  • moderators
    moderators Posts: 7,688

    TwoForOneSpecial, thank you for starting this thread! Hope treatment goes as smoothly as possible for all of you ladies!

    TwoForOneSpecial, if you want you can add your diagnosis and treatment information to your profile and make it "public" so others can see it under your posts and will help them answer your questions. You can fill out your profile by clicking My Profile at the top right of your screen, and following the prompts to enter your information in the My Diagnoses and My Treatment tabs. Let us know if you need help with that!

    Best wishes,

    From the Mods

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35

    Glad to hear from someone else in the December club! Good luck to you too. Interesting that you're finding radiation more mentally draining than chemo. I hope it's at least easier physically! Of course I have nothing to compare it to.

    I was given a prescription for a steroid cream (don't recall offhand what it's called) and told to use nothing else - no moisturizers, nothing. Only 2 treatments down, so no idea how much it will help.

    This coming week will be my first 5 day week. I will continue to go M-F, with days off for Christmas day and New Year's Day only. That has me finishing up my last (16th) treatment on Monday, January 4.

    Thanks Moderators for letting me know about setting up the signature with Dx info. I had been wondering how people did that . . .

    Rachel


  • Mysticmint
    Mysticmint Member Posts: 6

    Hi All:

    I will join this group too. Having my first treatment today. Already did the simulation. The place I am going is super friendly, which definitely helps a lot. I am not too worried about the radiation. The biggest worry I have is for feeling fatigue, which I heard is a frequent side effect. But otherwise, I have a good attitude and hope to get this final lap over with. Yes, I too wish it would be over in 2020 to end a crappy year, but I will settle for January.

    Good luck to all!

  • blusteryday
    blusteryday Member Posts: 49

    Just finished up #6 this morning. On Saturday, I noticed a skin change next to my scar line...a fleshy type growth, 5mm and similar to a light colored mole? I took a picture and sent it to my RO and told her I was perplexed. It doesn’t hurt, sometimes itches, but definitely noticeable...and it wasn’t there in pics I took on 11/16. Just another issue to worry about.

    Mysticmint, I hope your first session goes well!

    TwoForOne, you have an insane schedule for the holidays, but at least you get the sessions knocked out! I go straight through the weekend before Christmas so I can have 3 days off. I’m staying in our RV about 2 miles from the clinic, but 2.5 hour drive from home, so I’m thankful they are giving me a few days to go home.

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35

    Mysticmint, Hope it went OK today. The techs where I go are also very nice. I asked today if they were on a regular schedule, which they are not. I've now met 5 out of the 7 of them, so I expect to meet the rest soon. Also nice to see that I really can be in and out in about 20 minutes. It's amazing that for radiation they have a separate parking lot with a door that takes you right in where you need to be - saves about 5 minutes of walking time each way from parking in the main lot and then making your way through the building. It's a little thing, but really nice.

    BlusteryDay - that sounds like such a hassle to be so far away. I have about a 30 minute drive, so not so bad. I'm listening to a really good audiobook in the car which helps. Is someone staying wtih you in your RV? I suppose staying alone could be nice if you like the solitude... I have teens at home, so would not like to be away for extended periods (they are actually really good teens - if they were like I was at their age then I would prefer to be away as much as possible). I hope you get some reassurance about the weird skin thing - let us know what you find out.

    I went for day 3 of 16 today, and all is well. Not tired yet (but I've been pretending I am to my boss to keep expectations low). I'm curious how long it takes for the fatigue to set in (thinking about looking at previous month groups to see what people reported).

    Hope you're all doing OK!

    Rachel


  • blusteryday
    blusteryday Member Posts: 49

    TwoForOne, I'm staying by myself...with my dog. Lol! She keeps me busy and forces me outside to walk her, so I'm finding it has been good for me. I'm currently averaging a mile a day, which doesn't sound like much but I didn't do ANYTHING during 3 months of chemo. I also have family who live within an hour of where I'm staying, so that's nice too.

    I have NOTreceived a message back about the skin growth, but expect to hear more when I see my RO on Thursday for my “see" visit.

  • Poppy_90
    Poppy_90 Member Posts: 84

    Can I crash your group? I was part of November, but they have all finished. I’ll be going until Christmas, so would love to jump in, if you all don’t mind a crasher?

  • blusteryday
    blusteryday Member Posts: 49

    Welcome, Poppy! How is your treatment going?

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Hi everyone! I'm starting treatments tomorrow and I'll be going until 1/20 (which seems like so far away). I started taking Tamoxifen this past Wednesday and I've unfortunately been feeling some side effects from that already (headache, nausea, lower backache and fatigue). Nothing horrible, but I'm a bit worried about radiation fatigue adding to that. I have 2 quite young children (in addition to 2 older ones) and I work full-time (remote from home thankfully). All I can do is just hang in there and see how it goes! Good luck ladies :)

  • Poppy_90
    Poppy_90 Member Posts: 84

    Hi Blustery Day,

    Thanks for the warm welcome. I’m doing ok...just hit the wall on the fatigue about 10 days ago. How about you? I hope you’re holding up well. I see we are really similar in our treatment timing. It’s really nice to meet you.

  • moth
    moth Member Posts: 3,293

    Hi, I'm stage IV & starting 15 radiation treatments on Dec 10 for an oligoprogression in the lung. I did rads before in 2018 so not my first rodeo but gotta admit I'm more worn down (on chemo continuously since last March) so will be interesting to see how it hits me. Otoh, I get a break from chemo :D

    Can't remember what cream I used last time & it's kind of late to order things now so will have to make do with what I have.

  • iamloved
    iamloved Member Posts: 197

    I won't start my treatments until January but I have a few questions if you don't mind. How long is everyone's daily treatment? BlusteryDay I have the same issue as you. I am 2.5 hours to the cancer center. I will have to stay in an extended stay hotel. What do you do all day? I have this fear of eating 24/7. Or worst shopping constantly. Any advice on how or what to do for such a long period of time. Perhaps I could volunteer somewhere while I am there🤔

  • crsharper
    crsharper Member Posts: 36

    Hi Everyone! I started my treatment yesterday (12/7). I'll have 33 treatments; 28 full breast a 5 on my scar. I'm a little nervous about the side effects since I have to go so long. But I know I'll survive everyone does right? lol.

    I'm using Calendula cream right after treatment and a cocoa butter at night before I go to bed. My Dr. told me to start simple and move up if I need to because of skin irritation. She said I'd probably get a rash and need some cortisone cream, but we'd get there if I need it. I got super over-whelmed by all of the different creams and remedies that everyone was saying so I said I was just going to ask my Dr. and do exactly what she told me and try not to get so overwhelmed. :-)

    Has anyone started feeling a "lump" in your throat? That's the only way I know how to describe it. It feels like sometimes when you take a pill and it doesn't go all the way down. I had read somewhere that that could be a side effect, but I didn't think it would happen so soon!

    Look forward to doing this radiation journey with you all for the next few weeks! Hopefully we can make it a little easier for all of us!!


  • Poppy_90
    Poppy_90 Member Posts: 84

    Iamloved the treatments themselves are pretty quick. I'm in and out in 20 minutes, and that includes changing clothes on both sides. It stinks that you have such a long ride. I'll be thinking of you.

    For cream, I definitely didn't use anything my RO didn't recommend. I've got really sensitive skin, so it found us a few tries and some radiation rash to get the right combination for me, but it was worth it. Just like you, CRS, I was overwhelmed by conflicting information online. I chose to let my doctor be my main source.

    Moth, I just wanted to say hello. You and I haven’t ever virtually met, but I wanted to say your posts have helped me out so many times. Thanks so much, from one TN to another.



  • nicole_bei
    nicole_bei Member Posts: 12

    hello there,

    I diagnosed TNBC a week ago and will start my chemo next Friday. My plan is DD AC-T. I am in Toronto,CA. Any one have any suggestion or information is welcome. I am so afraid of side effect. BTW, the hospital did not mention the port or picc line. Is anyone here get chemo without these port or picc line thing?

    Best,

    Nicole

  • moth
    moth Member Posts: 3,293

    Nicole - this is the December radiation thread. You'll want the December Chemo thread https://community.breastcancer.org/forum/5/topics/...

    :)

    Hi Poppy_90 - nice to virtually meet you!

  • blusteryday
    blusteryday Member Posts: 49

    Hi Poppy_90! We have been on a similar path! Its good to know about the fatigue... I was exhausted over the weekend, after my first 5 but seem to have caught a "second wind". Whatever it is...I'll take it. It may also be that I'm more active now, walking at least a mile daily.

    moth, I've been following your story for some time on your blog. I hate that you are back in rads, but I'm praying for you! We have such similar stats - reading your story made me question what my OncotypeDX score was at the very beginning just after I was diagnosed. Thank you for sharing, so I knew to ask about it.

    Iamloved, I stay busy watching TV and walking/playing with my dog. I also knit to keep my hands busy so I don't eat...otherwise I would have a bag of chips and chocolate bars in my lap, continuously LOL! Our RV is small, so it forces me to get outside even when it is freezing, to walk and exercise my dog (MacKenzie). She's a 79lb German Shepherd LOL! I'm thankful that I don't have to drive back and forth. The park I'm staying in has several "medical patients", due to the location to the hospitals so it's nice to get outside and meet other people who are "displaced" due to treatment. I don't feel so alone. But let me tell you....that drive home on Friday afternoon was THE BEST! I was soooo excited to get to sleep in my own bed LOL!

    crsharper, I'm using Calendula cream, too, and have had 7 of 23 total treatments so far and no overall skin changes but I HAVE noticed that my scar line is enjoying the healing effects of the Calendula...it has softened and lightened my scar! (I'm very pale)

    Just killing time today - enjoying the cloudless blue sky and 64F temps. MacKenzie is sleeping at my feet - she played hard earlier, after my rads sessions. I'm having trouble getting excited about Christmas celebrations this year. We will see family - social distancing, of course, but I'm sad that I'm not home to decorate, bake and just anticipate family and celebrations...its just a different feeling for me this year with rads, cancer, covid, and Christmas. How is everyone dealing with the Holidays (all December celebrations)?

  • Mysticmint
    Mysticmint Member Posts: 6

    2 down, 28 (I think) to go, inclulding 5 boosts. So far not so bad, although I am surprised that my breast already feels warm and a bit achy. Am I super sensitive? Am I imagining? I am using Aquaphor and ordered Miaderm, as that what my Doctor suggested, but she also said if I have anything else I've heard of , just run it by her. Is there a particular brand of calendula that BlusteryDay or others likes?

    Reading some of your stories, I feel super lucky that my treatment building is about 10 minutes from my house, and I can be in and out in 20 minutes. I am also grateful that the building has good parking! It is cold today in NY!

    BTW, I also have a dog. A havanese who makes me laugh every day. I love my "support people" but my dog is seriously the best coping pal!

    Good luck to everyone and hang in there!

  • blusteryday
    blusteryday Member Posts: 49

    Mysticmint, I'm using "Boiron" brand. It's the only brand I've tried so far. I started to use aquaphor at the beginning (as well as the calendula) and then decided maybe I should use that later on, if I start to redden so I've just been applying the calendula cream twice a day. I'm glad you have your dog, too, they really are wonderful about keeping us company. I also have two parrots at home, who are testing my husband daily! LOL! They prefer me over him, so they make it difficult for him to change their food, etc. They are two teenaged Caique females.

  • Poppy_90
    Poppy_90 Member Posts: 84

    Mysticmint, good to know another dog lover! Poppy is actually one of my two pups. I’m borrowing her name, because she’s sweet but a badass :) Sometimes I feel like the dogs “get” me more than people.

    I had a lot of skin issues until my RO tried me on rejuvaskin radiation cream. Honestly, it fixed my skin issues pretty quickly. I was in a lot of discomfort and my radiation rash was spreading. This is the one cream that seems to be helping me. Tuesday is my day to see her, and she was surprised at how much better my skin looks. Maybe check with your RO?

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35

    Dogs are the best! I figure that I mine will force me to get out and walk everyday no matter what I feel like, and overall that's a good thing.

    4 down, 17 to go. Today for the first time I felt little tightness in my skin when I reached up to close the back of my car. Not a biggie, but the first thing that I think can be directly attributed to radiation. I was given prescription steroid cream to use, and was told to use it once a day, directly after treatment, and nothing else. I think I need to ask though - after I shower I think I'm going to start to feel the need to moisturize, so hopefully they'll say that's OK.

    It's amazing how quickly the whole thing has started to feel routine. I guess that's good.

    Hope the rest of you are hanging in there!

    Rachel


  • crsharper
    crsharper Member Posts: 36

    Poppy_90 I'm in GA also! I'm in the Atlanta area.

    Two For One I had my diagnosis 8/21 9 days before my 50th. I had my MRI on my 50th bday. Happy birthday to us lol!!

    Mystic Mint. I'm also using the Boiron Calendula cream. I just searched Calendula cream on Amazon and it was what popped up. I just bought another one today so I could have one in my purse for right after radiation and one in my bathroom for before I go to bed. Are you doing 30 treatments total? I have 28 whole breast and 5 boost so 33 total. We are on the same schedule today was my second treatment also! I felt like my breast was really warm today and I was really tired. Do you have a lump in my throat? I felt it today after I was done. Felt like I had food in my throat that I couldn't quite force down. It's gone now, but I was wondering if that was psychological.

    Blustery Day I'm looking forward to my scar lightening up a little bit especially my lymph node scar. I'm pretty fair and the scar is pretty dark!

    I am loved today was my second treatment and I was in and out quickly. I pulled into the parking garage at 9:30 and was back in my car at 10:00. That includes walking in, covid screening changing clothes both ways and treatment. I'm also fortunate that I'm close, about a 25 minute drive. I've got a pretty good routine already.

  • Poppy_90
    Poppy_90 Member Posts: 84

    CRS: I am in Atlanta, too! Who knows, we may have crossed paths at dog parks or Publix. I haven’t had any issues with my throat, but that doesn’t sound fun. Hope it clears up soon.

    Looking for advice here from you ladies. Does anybody else find themselves getting angry at stupid stuff? I have always been pretty calm, and gotten through treatment so far ok...tears, yes but not angry. I hate this...I’m guessing I’m just tired, the world, covid, cancer, Christmas etc...but I hate the way I feel. My friends tell me their tired and I want to roll my eyes. I hear people complain about 2020 being tough and have to hold back from saying what I want to say. I got so mad today at my dog for messing with the Christmas tree that I took a the tree down and threw all the other decorations in a closet. And I bleeping love Christmas.Anybody else going off the handle more than normal?

    CRS, I bet now you’re hoping we don’t cross paths at Publix! :)

  • crsharper
    crsharper Member Posts: 36

    Poppy Girl, I have bouts of anger too. I really am fine with my diagnosis and I don't typically have a whoa is me mentality but every once in a while I get so angry at the smallest things. The day that I was going for my CT scan I couldn't find my wedding rings and I was really scared that I had lost them. I was getting really worked up about it and all of a sudden I had my make-up mirror in my hand and I slammed it down on the vanity and it went flying everywhere. My husband came in and was like you can't do this and I had a massive panic attack. I felt so dumb after it was over for slamming that mirror down but damn it felt so good!

    So yeah I'm definitely experiencing some anger at weird times. I think it is all part of it...We just gotta take it a day at a time and let the emotions come and go. I just want to make sure I don't stay stuck in any of the negative emotions. Acknowledge them feel them and then move on!

  • Poppy_90
    Poppy_90 Member Posts: 84

    Thank you, CRS. You’ve made me feel a lot better. And my husband already said the tree is going back up as soon as he gets home tonight :)

  • moth
    moth Member Posts: 3,293

    A few years ago I was doing a lot of dog fostering & one of my fosters was convinced the christmas tree was an indoor toilet. Good thing I loved that dog like anything... :)

    I'm angry all the time now so that's just my baseline. Cancer is a stupid bad thing & nobody deserves this shit

  • Poppy_90
    Poppy_90 Member Posts: 84

    Moth, my dog was eating the bulbs and shorting out the lights. It’s amazing he didn’t shock himself. I never said he was smart. I do love the little dipshit though. His sister is so much smarter.

    So how do you manage when you want to go off the handle? I had a lifelong friend blow up my phone this week wanting my support for her dental appointment. I wanted to just scream and ask her when the last time was that she asked me how I am doing? But no, let me drop it all to help you with your cavity....I finally just decided ignoring the texts was the sanest option.

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Oh ladies, thanks for talking about your anger/emotional issues. I've been worrying I was odd and honestly doing my best to keep it to myself. I'm mad. Not about cancer. It sucks of course, but I'm not mad about it really. It's the little stuff like you guys said that really irks me. Also, I've been really noticing people's self-centered characters so much more lately. Not everyone of course...just those closest to you that really should be trying to be more supportive...and perhaps inquire about your wellbeing on occasion...not just prattle on about what's going on in their own 6 foot bubble...I would love to insert an eye rolling emoji here

  • iamloved
    iamloved Member Posts: 197

    Mama2FourKiddos🙄🙄🙄 here's your eyerolls😁