Starting Radiation December 2020 group
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Poppy- LOL about the cavity sympathy seeker! I know what you mean...my sympathy and empathy have both suffered because of what I’ve been through. I’m trying to be conscientious about it but when someone complains about “the sore spot in my arm after a vaccine” (🙄) or “my heartburn” (🙄🙄) it’s tough to sympathize or empathize. As a nurse, I actually worry that my personal practice will change and that saddens me.
My RO told me today that my “skin growth” next to my scar is likely not caused by radiation, and my MO put in a referral for a Dermatology consult. They have also referred me to Cardiology (apt is next week) bc my resting heart rate is in the 100s, and minor activity makes it shoot to the 150s and have shortness of breath. I’m SO over all of it...I want a healthy body and just to be able to resume my old life. I wanted this experience to be “wrapped up” by 12/31 but it doesn’t look like it will be.
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BlusteryDay, before treatment my resting HR was in the mid 60s. I got elevated resting HR during and post chemo. When I had chemo in 2018, it took several months after finishing for it to drop back to near my norm though it never quite got back to the mid 60s but close. Now that I'm back on chemo, same thing. Resting in the 80-90s. When my Hgb was low, my resting was way over 100. Just had an EKG today - normal sinus w/ short PR. Many chemos cause cardiac abnormalities though usually temporary .. well except, as I'm sure you know, the adriamycin can cause permanent cardiomyopathy. Best wishes for your cardio tests & hopefully it's just a temporary thing and your HR will come down. Have you had blood work recently? Just thinking about Hgb/rbc/hematocrit & SOBoE.
I had my first treatment on the lung met today. Got to look at the actual mapping images so I could figure out where to apply the cream. They're going from all angles - front, side and back so it's essentially the whole right side. I'll be a greaseball lol & I will need someone in my family to apply the cream to my back.
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Moth, Dang! That’s some serious radiation! You’re in my thoughts as you go through this next stage of treatment. On the note about my cardio... That’s what I’m exactly what hoping for...that it’s “temporary”. My last AC was back at the end of August and there really hasn’t been much change other than increasing SOB. I was anemic back during AC which was another hope...that it would (will?)resolve. I haven’t had complete labs run since ending AC (which I find odd), so it’ll be interesting to see how/if they’ve changed. Today, I woke up with a headache...my first in several months, and am just exhausted. I went ahead and walked my mile, but now I’m relaxing in the A/C (It’ll be close to 80F/26C here today).
On the plus side...My RO was pleased that my skin has only turned the slightest pink...so that’s good.
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Blustery Day and Moth,
Sending good thoughts to you both. Cancer sucks and treatments suck. But sending you both a virtual tequila shot. I like sending those more than virtual hugs.
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I will be starting my 8 weeks of radiation next Thursday waiting for the casting. Not sure how this is going to work as I still have an active drain tube from my Nov 5th radical mastectomy. I have already started my "greaseball" phase to reduce issues. Moth I use a plastic spatula for those tuff to reach back areas. Lol it's a great workout.
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Hey Deb - good idea about the spatula! I know some cosmetics companies sell little paddles with a special disposable sponge that you use to apply things on your back. My plan is to milk this to try to get back massages from family at the same time LOL
2/15 done for me. I find it funny that we get weekends off - like cancer cells don't grow on weekends lol. Will be nice for the skin and give me a chance to re-stretch my shoulder & back muscles.
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Hi Everyone,
Planning to start radiation (20 sessions) either Dec 21st or Dec 28th. Its been 5 weeks since lumpectomy and need to clear up a little infection first (delayed breast cellulitis). While not looking forward to it per se, its cold and COVID has everything locked down, so what else would I be doing? Nothing!
One question for the group, is there a concern about immune system while undergoing radiation? I've been fairly cautious so far, just wondering if I need to practice stricter methods.
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Welcome Glendacog! Looks like you had your Dx (similar to mine) on the day I had my surgery . . . You moved ahead to treatment really quickly!
I asked the RO the same question about immunity and was told that radiation does not compromise your immune system. However, they advised me to be very careful just because if I get sick I'll have to pause treatment until I'm better.
I kind of feel the same way as you - it's not like I have anything better to do with my time than drive down for radiation these days. I'm technically "working from home" but I have barely any work to do (and even what I should be doing I really can't focus on). I'm bummed that treatment will go straight through the holidays, but glad that I'll be getting it done with.
I am 1/3 of the way through treatments today (21 total), and this was my first full week, and I still feel perfectly fine. I don't really expect to make it all the way through with no side effects, but I'll take it for as long as I can. Reading this board does make me feel lucky (or as lucky as one can be having breast cancer) - Compared to some of the ladies my diagnosis and treatment plan almost feel not worth complaining about.
Good luck to you!
Rachel
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So got a call today and the machine went down...I was not expecting that! So they cancelled my appointment today and postponed my Monday appt until 3:00 to give the machine time to be repaired...Has anyone experienced that ? I'm super bummed that before I was scheduled to be done on a Friday and now I'll have to go on a Monday for my final treatment!!
Good news one week down and no side effects. Everything I've read though says about week 3...anyone having extreme fatigue yet??
Hope everyone has a great weekend and gets lots of rest!!
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crsharper - My final appointment is also on a Monday. Not only that, but it's the Monday after New Year's, so it pushes me into 2021. However, being winter in New England, there's a real possibility that one or more appointments will be missed due to snow (possibility of 8-10" overnight on Wednesday), so it's likely that the final date will get pushed back by one or more days. Still, it will end eventually . . .
I finished my first 5-day week today (had 2 days last week) and still feeling good. I play up being tired to my boss, and even a bit to my family - that way someone else might wash the dishes - but really, I feel perfectly fine so far.
Rachel
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Two for one That stinks that you may have to go one day into the new year! I will have three weeks into the new year...I was really bummed about that too. My deductible is $5K so not looking forward to having to pay that again. AND on top of it, we are changing insurance companies...that should be fun to deal with right in the middle of treatment!! I think based on having to have a mammogram twice a year for the next few years, I'll just have to resign myselt to the fact that my mecical expenses are going to be highter and i"m constandly going to have a payment to the hospital for the foreseeable future!!
We are right about the same timing on everything and I don't know if you saw my earlier post, but right around my 50th bday too! :-)
I've been playing up the tiredness a little bit too, but I have a feeling we are going to be tired later so we are just preparing them lol. My friends made a mealtrain for me and I feel guilty but they wanted to do it so bad and again, I know I"m going to be tired later so I'll take it and be thankful. 7 weeks is going to get old I think!!
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CRS, I have had the machine go down a few times. I feel your frustrations. When that happens, I try to make a point to get some little treat for myself. I don’t mind so much when they call first. But when I drive there and find out, that’s when I have to get a donut or something on the way home.
I’m a little further along than you ladies since I started in early November, but I am definitely feeling the fatigue. I have 34 total, so between chemo and rads, some days it feels like I have been making this drive to the cancer center for years rather than months.
During chemo I didn’t have to take days off other than treatment days, but have had to start working four day weeks on radiation. I’m disappointed in myself. I was hoping to be one of the tough ones who go through easily. My boss is trying to talk me into taking the last two weeks of the year off. Which is so sweet, but also probably because I have not been doing the most stellar job lately
Wishing you all a peaceful weekend.
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that's funny you mention your treat. I had gotten in a habit of stopping at McDonalds and getting a Diet Coke and Apple Pie after any of myappointments when I was getting some sort of results. I bet I hadn't had an apple pie from McDonald's in 5 years and I've had 4 the last 2 months. 😂😂
Take care of yourself! I'm sure your boss was being kind and wanted you to rest!! 😊😊
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I haven’t had a McDonalds pie in years, but that does sound so good. Although I do miss the good old deep fried ones from years ago. Even if they did cause some serious mouth burns. Hope your weekend is a good one.
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CRS - I was thinking the same thing about my deductible. I actually tried talking to the RO's office about how the billing works (is each session billed, or is a one time thing) and they had absolutely no idea. I got the start date sped up with the hopes of finishing within 2020, but then it took awhile between the simulation and when they were ready to start, so that's how I ended up with one session on 2021. However, my deductible is only $500, and I figure that if I'm getting an MRI every year that I will spend the deductible anyhow (the one I had this year was over $400), so I realized that it doesn't make any difference. $5000 is super high though - good luck with that.
Poppy - why not take some time off? Do you have paid leave? I am taking half days through my treatment, not entirely because I can't work, but because I have the coverage so I might as well. In a normal year I might have preferred working since it would be a good distraction. However this year I'm working from home, and I find it really hard to focus anyhow. There's also not a lot of work to do, even in the half day I'm on the clock (I work in a program with international students, and they didn't come this year - since we deferred them all to next year we're not doing admissions either, and there's not much else to do). I go for treatment in the morning, I'm home by 10:30, and then I have a couple of hours to myself before checking in with the boss. I imagine that as I get farther into treatment I may actually need that time to rest. Of course I didn't have chemo, so radiation is the first real assault on my body (well, except surgery).
Mmmm . . . McDonald's apple pies. I don't think I've had one of those in at least 30 years! Did they really used to be deep fried? I don't remember that, just that they were really good. No McD's near me, so no real temptation.
-Rachel
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Oh my I just went back and read my post. Holy autocorrect lol! Hope everyone has a great weekend
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Does anyone have any trouble doing the breath holds? I was fine for the first couple of days, but then I developed some sort of anxiety towards doing them and instead of just doing the two (one for each angle they have the machine at) I'm doing like 2-3 on each angle. The techs haven't mentioned much besides that I go out of range and the machine auto stops, which is why I have to hold again. I'm not scared of it...I'm not sure what it is. I'm just anxious, nervous, not sure...
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Mama2FourKiddos - I was told to breathe normally through the radiation. Wonder if we're on different equipment, or just different protocol.
Just had 9 out of 21, and it's the first day that I nearly lost my sh*t. They've been running really late for me the last few sessions (they told me it should be back to normal tomorrow) and I've been stuck in the waiting room with a loud annoying TV show AND cheesy Christmas music playing (sorry everyone - I don't hate Christmas, but I do hate the music that plays incessantly in all public places). I was sitting there plugging my ears for 20 minutes and started to cry when the very nice technician finally called me in. He gave me a survey to fill out - he said they won't listen to him if they complain, they'll just say no patients have complained. So now at least one has.
It's wierd that I'm mostly feeling fine, but have been emotionally all over the place and losing patience with my family (yesterday I told them we were having cereal for dinner because I get so pissed off at the expectation that I will always be cooking, and I lost it the day before because no one cleaned up after dinner - my husband tells me I just have to ask, and I told him that I am not "asking them for help" because it is NOT "my job". They are part of the family, they eat food, they need to do their part, not just "help me out" when I freak out. Still a work in progress (with very little progress).
Anyways, just venting.
Hope you're all doing OK.
Rachel
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Hello!
Just finished 6/33. I'm tire today but not sure if it is from radiation or because I stayed up too late last night lol.
MAMA 2 I lay on my stomach so I don't have to hold my breath. I had read others talking about holding their breath so I thought I would have to, but since I am in the prone position I don't have to. I think I'm lucky that my cancer center has the tables that allow you to lay in the prone position. Makes it a little easier and the breast hangs away from heart and lungs since I am left side.
TwoFour My family has been getting on my nerves too with the expectation that there will be dinner every night...sometimes I'm like are you kidding me, you know I'm doing cancer treatment right now right...and on top of that my extended family has all decided to come here for Christmas since I can't travel...a little anxious about that!! I'm lucky because my friends really wanted to do a mealtrain for me to help during radiation, so I have meals coming every Monday, Wednesday and Friday for the next 6 weeks. My family may be on their own for the rest of the meals!
Hope everyone is having a nice routine week and no radiation surprises!
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rachel, the breath hold thing is when you're doing rads on the left breast. It's to protect the heart from the beam by lifting breast tissue out of the way. mama2fourkiddos, I wonder if it would help if you spent time in between rads (at home I mean) doing some guided breathing with a meditation app? Just a few minutes. I've had the left side rads before and the breath hold thing also is done on CT scans so it seems I'm always doing it. When I get on the table and am just waiting, I practice my relaxed yoga breath - nothing too deep, nothing weird. Just regular in & out. Then when I get an instruction to do something different, I just do that and then return to my focused in & out. But also, if it's not bothering you to be there a bit longer, doesn't really matter. The machine will as you say auto stop and just swing by again. It's all fine. Don't stress about it.
rachel girl, just stop making dinner. Order something in or make something for yourself. Or make a chart on the fridge and require everyone to put their name on a day(s) and they make dinner that day. It's ok to just say "NO, I'm a cancer pt in active treatment and this is not something I'm doing". Also, just walk out of the kitchen and let dishes pile up. It will be fine. It helps to develop a temporary almost blindness to mess and clutter. Just serenely walk by and go watch netflix. Or hire a weekly cleaner. Just stop doing all this yourself and relax. If you want to do something, go for a walk outside. Leave the house alone.
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Breath holds are also for right side, if you have a small chest and little breast tissue...that’s me. My primary tumor was high on my chest, also. I have to do the holds on all four “zaps” plus the x-ray. @Mama2Four, I have had easy days and difficult days...and I’ve noticed my mask positioning (required at MD Anderson, not sure about elsewhere) really affects how it goes. I have to make sure the nose piece isn’t pinching my nose. Also, I take my breath when *I* am ready... I don’t rush, exhale completely and then breathe in as I push my stomach out. I usually end up having to exhale a little to hit the mark. I hope you can find a visualization you can “zen” on to help with the anxiety.
I have finished 12 of 22 today and my skin is beginning to feel uncomfortable...using calendula and Aquafor and feeling gross and greasy LOL!
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Interesting about breath holds. I'm not big on top, but I guess big enough that I don't have to do this.
I noticed yesterday I was feeling a little sore, and last night getting ready for bed was the first time I noticed my right breast being a little red. It was back to normal color this morning, but I expect to be seeing more and more of that. The only thing I think I need to be careful with is my 15-year-old very huggy son - not complaining that he wants to hug me every time he sees me (and in all other ways is a normal, fairly well-adjusted teenage boy), but he's going to have to learn to hug just my left side for awhile...
And yes, I know I need to just hold out and let everyone figure out that the dishes aren't going to wash themselves and dinner won't just magically appear . . . but my family (and every roommate I've ever had) knows that they can hold out longer than I can. At times I've used the "chore chart", but still no one does anything until I nag. My husband is actually the worst of them all - we've lived together virtually all of our adult lives, from back in the time that playing house was fun. At least he holds up his end of being a ridiculously traditional couple and he fixes the cars and mows the lawn.
We have been getting take out more frequently than normal for us, but I prefer not doing that more than once a week - although maybe it will become more appealing if the fatigue sets in.
Mostly I'm just feeling grumpy - I think it would be different if I could meet friends for coffee and decompress that way, but it's just not an option. I do walk with friends at least a few times a week, so that's something.
So, anyone else going to get their first snowstorm of the year this week? Where I am the current forecast says 8-12" Wednesday night, with another 1-3" into Thursday morning. That might be a day to cancel radiation, although it's a bummer to stretch it out even farther into January. Still, better than getting into an accident on the road...
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TwoForOneSpecial - I hear you...I have the same thoughts. If I have to ask you to help me then you must think it's "my job" to complete whatever the task is, and by me actually asking for the help I am agreeing it is "my job". So I will not ask, because I'm not admitting it's "my job". A catch 22
And a cereal night sounds like a good idea in our house this week...it probably would be one of the few nights there's no complaining or pouting about what's for dinner. I do have a 4 and a 2 year old to contend with lolThanks moth and BlusteryDay for the mediation and mask positioning thoughts. I will try to concentrate more on breathing during tomorrow's treatment. To be more present and purposeful with my breathing rather than being so hurried. I hope it goes better. It could have something to do with the mask too. I think I'll try to position it better when I lay on the table. I just hurry and hop on and put my hands on the handles above and turn my head and I think it gets pushed up too high. Tomorrow will better...and if it isn't, well then I still have 23 more times to get it right
Crsharper - I wish I was given the prone position option, but I wasn't. Maybe where I go doesn't have that type of table...wish they did
We're supposed to get a storm tomorrow into Thursday morning too. They've already rescheduled my normal 9:15 appointment for 12:15 PM Thursday, so we'll see what happens.
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My breath holds went perfect today!!
I wasn't anxious and I took my time, slowly breathing in when I was ready. Thank you for your insight yesterday!!Also, I ended up cancelling my treatment for tomorrow. Daycare is already closed for tomorrow and the storm is supposed to go through the night into tomorrow morning. I just let go of the stress of having to get somewhere tomorrow...it'll just get tacked onto the end and it makes no difference if I end January 20th or 21st in the long run.
Hope you ladies have a good day!
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Hi ladies. Mind if I join you? I start my course of radiation tomorrow. I've been a bit apprehensive about the breath holding so your suggestions have been really helpful. Thanks Moth for reminding me about yoga breath. That feels familiar and should be very useful tomorrow.
This is my second go at radiation. Had 28 sessions ten years ago on my right breast (no breath holding required). I remember going in with a very bad attitude, but got through just fine. I used Miaderm and Emu Oil (weird I know) and had zero skin issues. I honestly don't know if it made me tired as I was already so tired after six months of chemo that a bit more didn't seem to make much difference. I did get a cleaning lady and kept my 12-year fed with frequent pizza deliveries!
I was diagnosed with a new primary in my left breast in October, just five months after finishing my 10-years of Letrozole for my first cancer. No chemo this time (Oncotype score 18) which feels like a gift! I just need to get through three weeks of radiation, do 10 more years of Letrozole, and I'm done!
Stay safe and warm through the storm in the East!
Patty
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Hi Patty! Good luck with your 1st session tomorrow!
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Hi Girls, Thanks for all the discussion on feelings, fatigue, rashes and creams. I just finished chemo yesterday, Dec 15th. I'll get my last neupogen series next week on Dec 22nd and 23rd, a PET scan on the 28th, and then my 2nd visit to radiation Oncologist on Jan 4th. I don't know what to expect during that visit, but I will come armed with questions from this thread. I'm told that I will have 33 treatments.
I'm hoping I won't get too fatigued to work with my little 22 month old girl who is post open heart. I have a very kind and understanding team that I am working with. They have done a great job of covering me through surgery and chemo as needed,
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Hi All,
I'm so glad I found this group! I begin chemo tomorrow morning. I'll have 4 rounds of Taxotere and Cytoxin followed by 4 weeks of radiation. My Oncotype DX score was 26, so my oncologist and his colleagues recommended chemo. I'm confident in the decision and ready to tackle this. I'm going to try using ice packs on my hands and feet - I'm a crafter and am hoping to avoid neuropathy. I appreciate reading about the ice treatments, as I wouldn't have known about that option if it wasn't for this forum
I'm a third grade teacher and had to say goodbye to my kiddos yesterday until after Spring Break. I told them I'll Zoom with them when I can so they can see I'm not scared. They have been such a support through these past couple of months!
Thank you all for your great advice!
Kris
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Hello everyone!
Just stumbled across this thread and you all seem like a wonderful group of ladies to converse with as we progress through our radiation treatments. Reading through some of your posts, I feel extremely fortunate that the MD Anderson Cancer Center is only 5 miles from my house and I am able to get my treatments on my lunch break as I am working full time. I am halfway through the process - today will be treatment 11 of 20 (finish on January 5). So far I haven't had any issues - skin looks great and I have not had any fatigue (hope I can avoid that). I've been applying aloe gel immediately after treatment and then using Auqaphor overnight.
I am having whole breast radiation; was told I wasn't a candidate for accelerated partial breast due to a narrow margin on one side of the tumor and due to the amount that was removed. Treatment is a prone position, which does not require me to hold my breath. The techs at my facility have been great and have let me time the treatment, take video of what the machine is doing and even snapped a few photos of me on the table. Since I am face down, I wanted to know what the machine was doing as it was whirring around my head as I would feel a warmth across my back on occasion. I was shocked at how quickly the actual treatment lasts. Takes less than 5 minutes from the time I disrobe, get positioned on the table, have the treatment, to getting my smock back on. I had my second simulation yesterday and it appears that for my boost treatments, I will be treated while laying on my side. I meet with my RO today, so I'm curious to learn more about the change in position for the boost portion.I've been doing a lot of research on cancer cells and how they "turn on and off", for lack of a better term. Since I am ER-/PR- and will not be doing any type of chemotherapy I figured I should probably figure out what I can control in my environment to create a less favorable habitat for the cells to grow and divide.
I'm very fortunate that MD Anderson offers a integrated treatment approach which includes meeting with a dietitian. An interesting thing that was shared with me during this process is to try to limit the amount of antioxidants in the body during radiation, as it actually helps to protect the cancer cells from the radiation they are receiving. I stopped my supplement routine and also stopped consuming green tea to hopefully mitigate that. It does make sense, but seems counter intuitive given the fact that you want your body to be "strong" as you navigate this.
I had to have a couple of COVID tests during this process to ensure I could continue with my treatment plan. After having several brain tickling nose swabs, I figured I didn't want to deal with that again, so I have pretty much become a hermit crab and stay home. Living in Arizona, I'm lucky that I can enjoy the outdoors this time of year and get out for walks and such. My RO did say that because radiation does damage to your cells, your immune system will be compromised during treatment and for several weeks after you stop.
The biggest struggle for me is deciding what music I want to listen to each day when I am in there. Rarely do I get to hear two full songs. Today I think I am going with Frank Sinatra to mix things up. There is an older lady that has her treatment after me, so maybe she will appreciate the genre.
May you all stay well and strong as we navigate this part of our treatments!
Cheryl
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MAMA yay for easier breath holding!!! Glad that was easier for you! Good luck with your snow storm! I’m in Atlanta so we’re just getting cold rain!
Welcome to our new members! Good luck!!
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