Spring 2014 Rads

BigDBeatingBigC

Slow congrats!!!  As soon as that upper respiratory infection goes away, you need to celebrate!!  Glad to hear you did so well.  I had my first boost today and I swear I had more energy today than all of last week - go figure.  Did you have any pain at all in your breast or back?  I am feeling a little, just curious if you had anything like that.  Please also let us know about how the next couple of weeks go for you.

Anonymous

BigD, I had soreness in my breast - I wouldn't really call it pain though. My back is killing me now, but I think it's from coughing non-stop for the past three days. I don't think it's radiation related. I didn't get the exit burn I've read about. My underarm looks brown (like dirt), and it's starting to show new skin underneath. I can't really call it peeling because there is no peel, if that makes sense? I'll report back in a few weeks and let you now if there are any changes to the skin. Good luck!! You're almost done too!!

LidzyWidzy

Quick question - I have, after only five rad tx, noticed a hardening of the area where I had the lumpectomy. Has anyone else experienced that? I wonder, should I gently massage that area? Feels like a large lump there and I wonder if it'll be permanent. If so, I'd never detect another lump in there!

Anonymous

Lidzy, My whole breast feels hard and tight after the radiation. Maybe someone that has been out of rads for awhile can answer if that changes with time.

LidzyWidzy

SlowDeep - does the hardness persist or do you feel that it improves in the hours after the rad tx? It has been 12 hours since my 5th tx and I sort of feel like that poor boob is a little more like it's old self. Curious about how it'll be after 6/33 tomorrow. Thx for weighing in.

faerywings

*happy dancing for you , Slow!!!!*

Lidzy- did you still have a lot of hard scar tissue at your incision site? I still do, and only after 2 tx, I feel like it is already slightly thicker. Could be my paranoia, or just how my body reacts to the rads. If anyone of us could figure out for sure WTH our bodies are doing, we'd be billionaires.

LidzyWidzy

Hey, faery - yup, there was a thick area in the lump site after the surgery. Just seemed, well, bigger and harder in the hours following the rad tx. 24 hours later and it appears to be back to what it was post-surgery - sorry for the panic - guess, we'll see how it reacts to 6/33 today!

Have a happy, healthy today, all of you!

VintageGal1111

Hi Pam & Ladies

 I went for my rad simulation yesterday. Phew not a fun way to spend an hour. I had just finished my Herceptin infusion & went down the hall to radiation so that was ok. But being 3 weeks post op BMX made it a bit tough keeping those arms up for almost an hour. They did all they had to do, machine, measuring marking etc, then did it all a second time with me wearing weird goggles so I could see a screen to help with my breathing, well to hold my breath. I will need to do that during treatment because the rads will be very close to my heart. It sure was cold in there, specially exposing my new flat chest. When I go back the 18th it will be a dry run.

VintageGal1111

Hey Gram

 I had my rad sim yesterday too but don't start til the 18th, well actually that is a dry run on a friday so I don't have actual rads til that Mon.

Pam358

VintageGal - glad you made it through that ordeal. Mine took a long time too but I didn't have to hold my breath, that part seems difficult. The arms over your head is difficult too. I sometimes have some soreness afterward from that part, but they don't hurt quite as much during the treatment as they did in the beginning so maybe yours will improve too. 

20/33 completed for me, this afternoon will be 21. My skin is holding up pretty well - it's pink but not sore to touch. I've been using Miaderm. There are some aches and pains inside my breast and underarm. No snow in the forecast all week so that makes the drive better and there's no need to stay overnight. :-)

Anneb1149

Congrats SlowDeepBreaths on completing Rads. Your words above were exactly what I needed this morning. I have my sim today and start tomorrow and am extremely nervous. Got thru chemo and BMX in a state of shock and denial that this was really happening to me, but since surgery at the end of Jan, my brain is starting to function again, then waiting 5 weeks from first visit and markings to start day today, my brain again fogged up about rads, especially since I was starting to feel somewhat normal again- minus my hair and boobs of course. Now it feels like it is happening too quickly -and I am not ready. But I know this is the final step for me, and once this is done, I can travel to be with my grandchildren again and I want that more than anything else, so I will hold on to your words that the anticipation is worse than the reality and move forward. 

InspectorJavert

I think I just need to vent. This has been a whirlwind & I'm still not sure what I'm doing! When I was diagnosed, my father-in-law was on his deathbed so we didn't think we should tell my family or my husband's until after surgery. And that's been 2 months ago & we still keep coming up with reasons not to tell the families. 

So my alarm goes off at 4:15 am, I let the dogs out, get ready for work, let the dogs in, husband comes in at 5:45 so I dart out to get to work by 6:30. Deal with the boys club mentality, wear freaking polyester & a 20 pound gun belt (private security), get off at 2:30 & make a 20 minute drive in 15 minutes to pick the kids up at school. Kick them out in the driveway, drive across town to radiation treatment, come home, fight with 2nd grade common core math homework while getting supper ready & waking up the hubby. Throw supper on the table, discuss our day, shove the kids downstairs to dress out for ball games/practice. Zoom around to 2 different parks to get the kids there in time for game/practice. Cheer the kids on, throw them back in the car, shove them in the house, get them started on dishes or shower, let the dogs out, get hubby ready for work, put one kid in bed, kiss hubby goodbye, let the dogs out, get the tween in bed, set the alarm, forget to let the dogs in, turn the alarm off, let the dogs in, go to bed, forget to set the alarm, get out of bed, set the alarm, argue with the dogs that they aren't going back out, finally get in bed at 10. Lay there watching the ceiling fan spin for an hour or so, alarm goes off, I get up & it's Groundhog Day all over again. 

I'm thinking I should have told my family about this so I could get some help. But the longer I've gone without telling them the harder it makes it to tell them. So I'll tell them later. Mainly because I don't have the energy to be strong for them.

I'm tired. 

inks

InspectorJavert -  I think it's time to tell somebody. If not your family then let at least some of the other parents from your kids activities know so they could pitch in driving them to sports. But some people can still be clueless, our neighbor first said that they could take my son to boy scouts when I was doing chemo but in reality they were still calling us to pick up their son (which my husband did). My mother in laws sister died of stomach cancer at the time of my diagnosis so we held off telling them for 2 months. But I think you will find it a relief to let others know what you have been dealing with.

keepthefaith

inspectorjavert, welcome. It is a whirlwind for sure. I live alone, so my lifestyle is different than yours. My children are parents, but nevertheless, the hardest part of my DX, was telling them. Just bc I didn't want to inflict pain on them, I guess. They have been very supportive, even though they haven't always agreed with my TX decisions. My siblings and Mom all live all over the country. My DX has really made us closer in so many ways. I am grateful that something good has come of it. I get phone calls from my brothers and sisters every couple of wks, checking on me and it means so much to me to know they really care. I don't know how I would have managed without them.

Everyone deals with it in their own way. Some may distance themselves, some may be a constant source of support. Either way, don't feel like you have to support them. This is about you. If they can't provide the support you need, then you have the option not to share everything with them. My Mom and half-sister have both had BC, so they can really relate, although we all had different treatments. It may be a relief for you, if you just let them know and tell them where your boundaries are. It is exhausting in so many ways...but somehow we get through it.

Of course, only you will know when the time is right and you can always come here to vent!

 

 

BigDBeatingBigC

Hi everyone!

Slow -- thank you and yes your words make complete sense to me.  I am just starting to have some kind of a peeling effect -- but not peeling -- right under my breast.  It does not itch or anything.  I had Boost No. 2 today and again, feel great, no redness.  I am sore -- it is not any kind of sharp pain and ibuprofen works fine to where I do not feel it during the day when I am at work.  Nurse says it is totally normal and other than that, even my fatigue levels are not bothering me much this week.

I did check with the nurse today on my supplements.  She said they looked at the printouts of everything I was taking and had no problem with it.  She too thinks there might be something to the Turmeric/Curcumin helping out my skin as much as I think it has.  She said they would have said something to me if I was taking high doses of Vitamin C or E, but as I was not, they were fine with everything on my list.  So that was good news!

I remember before starting how nervous I was and I am an Irish girl that burns if she even looks at the sun -- never could tan much my whole life so gave up trying years ago.  I was so afraid I would burn bad during my treatments, and I am allergic to the silverdene which is what is given to patients who start to burn or whose skin starts to break down.  My RO had said, "hmmmm I will have to think about what to give you if you start to burn."  And that made me nervous too, believe me!  But he did explain at the start that it does not matter if you are fair and you burn easily.  Radiation is different than what is coming out of the sun.  So do not worry if you are starting out and afraid you will burn because you burn out in the sun.

I have 3 boosts left and I am done.  And yes, I agree, this has been not nearly as bad as I thought it would.  I have not missed a day of work.  I have run errands, cleaned house, and done all the things I did pre-rads and I have been fine.  A little more tired at the end of the day, but honestly, really more of a bother to go for the daily treatment than the treatments themselves.  I hope this for each of you as you go through your treatments.

Joan

Macy187833

Hope everyone is doing well! I've completed 7/30 rads. Pam, I can sympathize with you about the long commute. I drive a 100 miles each way and have decided that I'm going to start staying over in the city where I have my treatments at least a few days a week. It's too much driving. 

I mentioned chest soreness earlier in the thread and talked to my rad onc about it. He said it was normal and that sometimes the "damage" to the tissue works itself from the inside out. Basically, it hurts me sometimes to take a really deep breath and my neck/throat is achy. I had a mastectomy so there is no breast left to take some of the radiation--it goes directly to my chest wall. I guess if you still have your breast, it can get hard and sore like some of you have mentioned.

My skin is still okay and the achiness inside kind of comes and goes. 

Everything is going well though. Other than the long drive. 

It sound like everyone is doing good? Hugs to all!

Pam358

Macy - check with the social worker associated with your clinic or hospital if you haven't already as they sometimes know of medical rates or discounts for certain hotels. I also just found out that the hospital associated with my cancer center has rooms available too.  Since the weather has been nice the traveling hasn't been as bad but if I get too tired at the end  of my treatment I may need to do it again. As a bonus a rock flew into my window on one of my trips and I now have that to deal with as well - it's always something. 

Redheaded1

Well, I started my rads today---will do 28 treatments, no boost.  Hard to hold arm in position, but will do my best.   Today was a longer day, as they did x-rays  first.  I am  on a new machine ,doesn't look  like any one has kicked it yet....HA.   Arm went to sleep almost as soon as we got started.

I am using Calendula crème and tomorrow, my Xclair crème should arrive.  This is pricey prescription stuff, but there is a great deal on line at Commcare Pharmacy (Mail order)  For every tube you purchase you get one free----just need your script written for enough---if it says 4 tubes, you get two and pay for two.  If it says 2, you pay for 1 and get 1....  Google Xclair Crème  price and it should pop up.  My BCBSIL  PPO wanted to charge me 70.00 but I am getting two tubes for 65. and not using the insurance...... Pharmacist and I have a good laugh every now and then....usually about my cheapness. 

mz_mes

Today was day 2 for me.  Working and squeezing in the commute and rads between meetings is a bit of a drag.  They promise me they will move up my time as others finish so it may not be as inconvenient going forward.  Did PT after surgery and before Rads so getting my arms up is not a problem.  Have had to dial back my exercise a bit as I've got some swelling around the SNB scar.  No swelling in my arm thankfully.   So I will keep the weights on the light side.  Trying some yoga and got out on my bike for a bit.  Haven't biked in a long time so that was fun.   I think nerves of this whole thing are making me more tired than usual and also all the appointments interrupting my day doesn't help either.  I am counting my blessing though as no chemo needed and it was caught early.  I'm lucky.

Sytherea

I started my Radiation on April 1st. So far so good. I am not a fan of the Breath-hold machine but I like the benefits/protection it provides the heart. It does help me hold my breath/ribcage steady. I fondly think of it as me scuba diving my way through radiation. So treatment #8 today, I started to experience the "burn" feeling, slight pink. I am a bit nervous about how bad, Bad is going to be by the end of radiation. I was given Biafine emulsion from the beginning, which I use religiously. It is a great benefit in easing the slight sunburn feeling. Radiation is an adventure in cellular function. I know cells heal faster when we sleep. So, I have included short naps (about 35 mins) into my day. Plus, I am trying to ward off any fatigue that maybe come about. It is a lot harder to incorporate a naptime than one would think. I hoping this time goes fast. I have 25 more treatments to go. I have moments in my life where time passes in blink of an eye; I am hoping the next 25 treatments passes in blinks of an eye. Has anyone else experienced slightly pink burning 8 treatments in?

keepthefaith

#8 done!

I normally go to rads early afternoon, but my DD needed me to watch her kids today, so I re-scheduled for 11 so I could be at her house at noon....well, President Obama visited our fair city today and they had the freeway and access roads closed down when I was supposed to be at my rads appt downtown! I skipped rads, went to DD's, so she could get to her appts on time...called the cancer center and got in a little after 4pm today. The tech waited on me; she usually leaves at 3:30-4pm. I will be glad when I don't have to revolve my life around BC!!! Was happy she waited on me. I also got word that my grant was awarded and my neulasta shot paid for, so I won't have to pay my $5500 deductible this year! I had to pay one in September when this mess started, so sure wasn't able to do that again 3 months later! So, I am feeling blessed today:)

I can tell my radiated breast is starting to change shape....seems as though the lumpectomy area is now showing indentations/shrinking where it hadn't before. I guess the tissue is reacting...I hope it can regenerate! Everything else is good so far.

Keep those SE's in check, ladies!

 

 

MsBHaven

Hello.  It is so nice to have this forum and hear from women going through rads treatments that nausea is not uncommon - especially after hearing from my "team" of doctors that no one has nausea from bc rads.  Knew I couldn't be the only one.  I just read your post, redlessi, about your breast feeling warm after your treatment.  I experienced the same thing after the first few treatments but haven't since then.  I have 11 left to go.  Then, hopefully, the nausea will start going away.

Thanks to everyone here who talks about their experiences.  I have found it so helpful.

flagirl

keepthefaith I had14/33 today. I too noticed indentation where they went in at the top of nipple area.  mine was at 11 O'clock 1cm. My scar is right along  the nipple edge.  I was told it would settle in and that it would be unoticeable.  You and I have similar grade size.

flagirl

misbhaven I have had nausea too.comes and goes mostly when I haven't eaten, which is weird. Hope it passes and you feel better.

flagirl

lidzywidzy hardness is common I have it too. Dr told me breast can become heavy feeling. Don't worry it's temporary. 

Anonymous

I'm a rads newbie, just joining the group. Simulation is Monday and I'm also one of the fair-skinned people that think I am just going to fry from the treatments. I also have super-sensitive skin and develop a rash at a moment's notice, so all in all, I'm fearing the rads. I'm assuming, since they're doing my right breast and nodes, that I won't have to go thru the breath-holding routine, so that's a positive. Thanks for posting, it's great to read about everyone's experiences!

flagirl

welcome clickchick I have sensitive skin and so far I am good.  I had 14/33 today and I am just starting to get a slight rash/itch. Just start using aquafore right away, don't wait begin now.  When you get into the treatments more, like about seven days, don't wash boob area anymore to remove old aquafore just let the water run down from your back in the shower.  No hot water, take a cooler shower.  Good luck - you can do this, We are here for you :-) The aquafore will stain clothes so wear old shirts that you don't care about. Someone said to use plastic wrap as a buffer between bra and skin to keep it from transferring.  I haven't tried that so don't know if it works.

VintageGal1111

Thanks for mentioning the staining. I start rads (dry run) on the 18th then for real that next Monday. I wear the teen stretchy bras from WalMart (5.88) that have a small opening on each cup for the thin foam liner (I add some fiberfill) because I  had BMX last month. Anyway I go flat at home, so will just wear an old cami under my top. but was wondering about the creams staining the bras. Would a piece of soft fabric be better than plastic wrap, that seems so clingy?

Lojo

vintagegal, I was similar to you -- rads to an unreconstructed chest (be warned you are statistically more likely to have a worse reaction, but except the week after rads were over, it wasn't that bad)

 I wore a sports bra with fluff for the first 3 weeks of rads or so. The aloe based lotion didn't stain, but the purple sharpie marker lines all over my chest did. I actually took to wearing a tight, dark tank top under the bra (looked weird, yes, but it was February /March and cold, so I wore lots of layers and it looked fine). At about 20/28 sessions I graduated to greasier lotion and stopped wearing a bra at all, and just wore old t-shirts with layers and scarves. You might to be more creative as it will be warmer when you're toward the end (assuming you're in northern hemisphere -- I always forget there are lots of Aussies here too). Good luck - you'll be fine.

VintageGal1111

Thanks Lojo

 I am in New Hampshire, we still have some snow left over but the last couple days have actually seemed like Spring so I am hopeful!!