January 2021 Radiation Club
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@Mindi sorry didn't see your message. Good luck for yours! I haven't started Femara yet. My oncologist said to call her two weeks after radiation ends and she's going to start me on Femara and monthly Lupron shots instead of Tamoxifen (I'm 35 so not independently menopausal). I JUST made the cut off where it's better for you to have monthly shots in addition to the daily pills which is super annoying - they recommend that til age 35 ugh. I was like but technically I'll be 36 around the time that I start hormone therapy and she said I can choose but the research shows better outcomes this way for people in my situation. So I'll be done with active treatment once radiation ends but I'll still be going to the hospital every month for 5 years for my shots c'est la vie. I hope that Femara has been going well for you if you started it!
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Well. I’ve packed a bag, and am ready to head to radiation tomorrow. A short stop at the pharmacy in the morning to get my prescription cream and a 2 hour drive to get there! I will be staying with my cousin and her family during the week...so I’m taking some clothes and extra toiletries so I don’t have to pack things back and forth on the weekends...if the weather is good, I will come home maybe on wednesdays too. I had an echo last week to prepare me for kadcyla infusions and the tech was not able to get the measurements she needed because of my expander. I hope this doesn’t delay me starting the kadcyla. I’m still waiting to hear from my oncologist on when I will be starting that...I just hope i tolerate it well. It will be a lot going on in my life if I don’t, and I’ve gotten so used to feeling good!
I hope everyone’s radiation treatments are going well this week!!
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morningstardust...they plugged your nose? I just have to look at a screen and when hold my breath a bar moves to another bar on the screen which starts the machine and the machine stops when I breath. They tell me when to hold my breath and when to breath. It went good today. Less than 30 minutes from undressing to dressing. And yes I thought I would be inside like simulation. They said tomorrow should bo quicker. I put my steroid cream on when I finished and will put it on tonight. My RO recommended vanicream so that will go on too...or 1 hour after the steroid cream.
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@mt good luck tomorrow!
@iamloved, yeah mine sounds the same as yours but with added nose plug. It is horrible. I had a therapy session right after (with a therapist who specializes in breast cancer patients!) and she told me to do diaphramatic breathing as much as possible to keep my anxiety down and to practice visualizing happy places. She also said its literally impossible for me to suffocate (my fear) so to just let that go. Countdown starts now!
Wishing everyone well no matter where you are in your journey!
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Question...Should my breast be a bit red after one treatment? Not sore but definitely reddish. I am wondering if it's the steroid cream.
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@Iamloved I saw a few people say that they were red after the first or first few treatments in the other radiation boards. My doc had me get this cream (I just ordered it from Amazon) and my naturopath was impressed that a regular doctor recommended it: https://www.boironusa.com/product/calendula-cream/
They also told me to put avocado oil on it every night before I go to bed. I don't have a steroid cream though.
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@Iamloved I started getting slightly pink by the end of the first week. I also have been using the cream that @morningstardust recommended (it is definitely a good one) along with several others. I apply them as often as I remember, several times a day. It's hard to know which one has helped the most or what my skin would have looked like without applying so much cream! When my skin started getting itchy (in week 3 of 5), I added in aloe vera straight from the plant. My radiation oncologist prescribed a corticosteroid cream this week (week 4) because I have a skin patch that is really itchy. I'm hopeful that it will remain tolerable through the end of treatment (7 more to go!).
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I am curious if others who had a pCR and no lymph node involvement are also having radiation of their lymph nodes after lumpectomy or whether just the breast.
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I’m not sure this is quite what you’re looking for but I had somewhat similar situation. I had a pcr, they originally diagnosed me as no lymph node involvement, but one of my lymph nodes reacted to chemo in such a way they think there was cancer in it and the chemo killed it,so they are doing radiation to my lymph system as well.
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LilBeamer...I had pCR and no lymph node involvement and yes they are radiating everything. They explained to me because of the size of my tumor, the fact it was a recurrence that the lymph nodes could have cells that are not detected. I was not happy to hear that but decided to let them do it. I just found this Physical therapist on youtube after searching info about foam cube bags {Swell spots or Jovipak are paddings for lymphedema management and lymphedema treatmen)t that reduce swelling and break up the dense tissue caused by radiation. My pt gave me one yesterday to move some lymph build up in my breast. ZMy swellin is nothing serious but was intrigued about how these foam cubes could move or reduce swelling. Here is her youtube video on the bags.
morningstardust I found the calendula cream at Natural Grocers. Thank you>
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I’m starting radiation on Feb 1. I was told that’ll I’ll need to use the lotions under my and around to my back, in addition to the breast. Is this what everyone has to do?
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Hey Laura - welcome!
I was hoping to begin and sure I would be in January but no - looks like I’m a February group! I will be 8 wks past my last chemo this coming Thursday and SOOO hopeful I am started with radiation before that date!
My RO said at our original meeting the ‘ideal’ timeline was 3-8 wks after finishing chemo. Have you RO given you timelines similar? It makes me nervous to have done nothing the past 7 wks!!!
Hope you are all doing well! Update when you can!
Mindi ~
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Just wanted to pop in and say that I hope everyone's treatments are going well (or are starting soon!). Mine are fine, I struggle with the longer appointments because I don't like my nose being plugged, but most days are less than 10 minutes. I've had 5 so far and no redness yet. There's a very small amount of swelling but my plastic surgeon anticipated this since they made me get completely "deflated" before I started.
@Twinkle - yes they told me to do my back and shoulder area as well.
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Hooray! I go tomorrow for the 'dry run' and my first radiation will be the following day, Wednesday!! I am so happy! I will finish March 19 and the next day will be the first day of spring! Perfect!!
Morning - you may have said - but, is nose holding common? Do all do that?
Hope you are all doing well!
Mindi
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I’ve finished #4 today, and so far it’s going well. I’m just a little extra tired, but have been running lots of errands and such after treatments. No real noticeable redness or swelling...I have a steroid cream to put on at night, and then my dr gave me a whole bag of different lotions and aloes, which was nice I thought. I really don’t have any pain, itching, or burning...yet. Let’s hope it stays this way!
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@Mindi, it sounds like I'm the only one in here that they're doing the nose plug for. Others are doing the same breathing hold (ABC breath hold) but maybe my hospital just does that in addition? I haven't asked if I can forgo it, I've been so focused on finishing/doing it correctly so I can leave as fast as possible but maybe they'll let me skip the plug, I'll have to ask tomorrow.
@mt yay I hope it stays easy for you!
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Went for the ‘dry run’ today and it was kinda emotional for me. They took some pictures with the machine and made sure it was all ready to roll for tomorrow. They marked me up with a sharpie ;0 and put some waterproof stickers on plus I already have the tattooing - just a lot of stuff!! I am not sure why the marker bothers me so much but it really does!
Did you all have this done??0 -
I had number 6 this morning of 19. So far so good. My nipple is a bit sensitive but nothing bothersome. I have a 10 minute walk to treatments so I have been getting 20 minutes in each day outside plus strolling the mall, grocery store and Walmart and Target, RO said fatigue usually start by end of week 2 but fresh air and walking do wonders for fighting it. She also recommended aloe straight from the plant if possible if the breast skin breaks. Lets hope NOT! Good luck to all you girls!!
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Glad to hear everyone is doing pretty well so far. I finished my 5 accelerated treatments last Friday and other than a little darkening of my skin, it was pretty smooth for me. I met with the RO afterwards and without my asking, he told me there was no evidence that accelerated radiation caused fatigue, so if I was tired, it would not be due to radiation (umm, Okay, if you say so).
Mindi - I'm sorry to hear they added Sharpie markings and stickers in addition to the tattoos. Did they explain why? I can understand why it bothers you. It seems like we have no control over our bodies during this process.
At my simulation and the last visit, the nurse used a digital camera to take pictures of my breasts and my face for their “records". Is this typical? It bothered me, however, it didn't seem like I had a say in the matter. When I reread the consent form it indicated they are working on some type of accreditation and if you are their patient, you must agree to be part of their process.
Take care and I'll be thinking of you.
Anne
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@Mindi awww I'm so sorry. I had to get the markers too (I also get the marked up when I get my expanders filled). Because I got the ultraviolet tattoos they also use washable marker to indicate where those are for easy visibility when they're lining me up. It will get easier in time but yeah, doesn't feel good to not have control.
@Anne yes they took my picture as well. At my hospital they said the face photo is so that the people in the radiation dept know me on sight for security (not that I think anyone is rushing in there to get radiated lol). For the breasts it was to have something to compare to if anything comes up.
@iamloved happy its going well for you!
I asked about the nose plug today. They said it helps them be as precise as possible so that I'm not getting extra radiation to my lungs or surrounding tissue. The doctor must have taken some psych courses because when I said I didn't like it her response was "Well, how can we make the nose plug your friend?" I laughed at that, it's what my therapist says to me about my anxiety. It actually helped me when she said that and I'm trying to say to myself that even though its uncomfortable its all helping me beat the cancer.
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So I am through 6 or 21 treatments (7 is this afternoon). I have sensitive skin to start with, so I am just itchy and sore.
Question - what is anyone using for deoderant? I am not loving being the 'smelly kid' in the house
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Good morning!
Anne - my RO told me radiation does not cause fatigue either! IDK!?! Interesting. Maybe it's the daily grind of it? I don't know. I also had digital pics taken and it was weird and vulnerable as well! UGH! So much UGH!! So does the darkening of skin go away in time? I never asked but am curious. My tech said to expect darkening but I'll ask today if that goes away so we can have more info. I am feeling less upset today.
Deodorant...I'm not wearing it at the moment and what I am doing is I wash with charcoal soap (always have - full body) and I think it helps me not sweat. So, I'm not smelling at least! Plus it's cold here!
@morning - I actually like that thought about 'make it your friend' and might try and apply that! I have always seen the treatments as my ally!! Fighting then war with me to kill the enemy trying to kill me! Guess perspective helps some! The healthy parts of my body rebound fortunately!
Okay - I've meal prepped this morning so my afternoons will be less taxing! Look forward updates!
Take care friends!
Mindi
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My RO said to expect some fatigue by the end of week 2. She explained it as wall. Not a constant feeling but something like you just hit a wall andcare tired. Maybe in the afternoon or maybe an hour before my regular bedtime.She said if it happens in the afternoon and you can take a nap. If it happens in the evening just go to bed. But she said the best thing to do is walk outside if possible. If not get 30 minutes in somenow 5 days a week (all the usual stuff about exercise) and break it up into 3 10 minutes if I want. It looks like next weeks temperatures may force me indoors. ☃️🌬❄
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Morning - thanks for the info regarding pictures. Yeah, I don't see anyone rushing into the cancer center for treatment either, but it makes me feel better to know what others have experienced.
Mindi - given that fatigue is widely reported as a side effect of radiation it seems odd that our RO's have said it's not. However, I could see where the daily grind would add to fatigue. I don't know if the skin darkening will fade or not. It's one of the rare times in my life where I've had a tan and I can't even show it off lol.
Iamloved - you are a third of the way thru! Hoping it continues to go well for you.
Anne
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Just getting ready to finish round 8/25 today. Wednesday I hit a wall and was tired, my nurse said most people in her experience say Wednesdays are the days they are tired...because you have the weekend to get rested up, and then Wednesday hits...then you make it to the weekend again. The weather is not good here, lots of snow in the forecast. I’ll be headed home after treatment, and hope the roads aren’t horrible for the trip back Monday.
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I am calling today my 1/2 way done day. 9 of 19 in the books. I had to really force my self to walk to my appointment this morning. So darn cold but I did and walked back to my hotel. Then walked back for my hercrptin infusion. My RO thinks the walking is keeping the fatigue at bay. Let's hope she is correct. Hubby is coming to visit. It's been 2 weeks since I have been home so pretty excited for the company for the weekend. 6 more full breast treatments and the 4 boosts. Yea!!! Have a great weekend everyone.
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Happy Friday!!
@Harley it is odd both our RO don't believe radiation doesn't cause fatigue. I'm hoping they're right! Time will tell.@mtspace - hope you can rest up this weekend! One step closer!
@Iamloved I"m so glad your husband is coming to see you. Enjoy! How many Herceptin infusions do you do? I was in a clinical trial with it in 2003 (my first round was HER2nu+) and I did 52 weekly infusions. I believe it saved my life and kept cancer from returning! You're close to done with radiation!
I finished 3/33 today! I'm feeling fine. My skin feels a bit sensitive but applying aquaphor daily and wearing soft clothes.
I'm surprised at the big area that's being radiated. I thought it was just gonna be breast and pit area but it goes to my collar bone and down below the ribs in the middle and to the side. More the merrier I suppose.Enjoy the weekend!!
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MindiG66...I will do Herceptin until July. Every 3 weeks. I think it's a total of 18 for the year. You radiation area is the same as mine. I only have 6 left to the full area then 4 to the tumor bed. My skin is doing fine. Nipple is a bit sensitive but nothing to stress about. Have a good weekend.
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