Radiation December 2018
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DWisely- I hate it for you that you have had such a rough time with them. I will join spoonie in flipping them off, there is power in numbers! I agree cancer patients should absolutely be pampered. We should be able to leave with the sense that even though it sucked, at least the staff made me feel secure and cared for. But it seems it is not the case in every center. Hang in the lady, and gentle hugs to you.
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Hi everyone. I am thankful for all your advice.Yesterday was my RO consult and today is my CT scan and marking. RO told me I would start on 12th. Already so over all this. I picked up aloe vera gel from the shop at the cancer center and as someone suggested, will start applying today. 😞
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Egregious, I had the same experience with being the last patient of the day for my first treatment. When I left the building was nearly deserted and it was also dark outside. It made it all feel more formidable.
On the plus side, an organization gifts robes to patients at my treatments center. They were out of robes during my simulation appointments, but have gotten some more in, so now I have quite a nice robe to wear in the waiting room over that medical-looking patient gown. Funny how much it helps.
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Hi Everyone, thought I'd join you here for the Xmas rads party. Have a couple other posts floating around out there. 2 down and 18 to go. I'm so over being exposed to half of Ohio. My appointments cut into the middle of the day so can't accomplish much. Today I will ask them to cut the Xmas music as I'm developing a serious aversion to it. Xoxo to you all
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Been meaning to pass these on, as I posted them in my Oct thread and in the Nov group too. These are the PT stretches I was given in the beginning of RADs to help prevent SEs like Lymphedema and shortening of range of motion. (Note - I didn't have drains, but these applied to me in any case) Also, stretches I was given later, when I began Cancer Rehab.
Even though I still ended up with Breast Lymphadema and Fibrosis, I know that without these I would be in a much tougher place.
I wish every center would do this proactively for us, but I know many don't.
Hopefully these will help you all on your own journey. Hugs and healing my friends.
PS --> (ETA) Below are also my discharge instructions from my post in Oct Rads Thread, which it seems not everyone the same ones but they seem helpful. Main take away....moisturize, moisturize, moisturize for 6 more months.
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"Did ya'll know that it can take up to 6 months for the effects of RADs to fully develop or clear even?
That, I did not know.
So my rehab doc explained a few things to be on the look out for -- like extreme tightening in the rib area, which can onset as much as 6 months down the road. Also to be on the look out for shortness of breath, chest pain when breathing, or dry cough -- all of which can be signs of Post RADs Pneumonitis.
On Wed, I was discharged from Radiation with the following directions --->
- to continue to hold off on my antioxidant related supplements for another 2 weeks
- finish the antibiotics I was put on to minimize risk of infection due to SEs
- to see RO in 6 weeks or sooner, if SEs are not healing
- to REST when needed and to not push myself to much, that can and will slow healing if I do
- to continue to apply the Calendula/Aloe Vesta/Miaderm 3 x daily until the redness/inflammation I've experienced is gone
- once redness/open skin areas have healed, use (Lubriderm, Eucerin, Cocoa Butter, etc) for AT LEAST 6 months after treatment
- if there is any sun exposure be sure to use SPF 30 or higher"
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DWisely: Sorry about your experience with the rads so far. That makes me upset for you, I will also join in with the flipping off.
Luckily so far I've had a pretty good experience. Today was my third session and it has been the same technicians and they all seem to be pretty compassionate. It's weird I actually feel tired today, I didn't think the fatigue would kick in this early. My radiation is first thing in the morning, I'm the first one and it is weird because I'm the only one in the waiting room but glad now it's in the morning. I get it over and done with and then go straight to work.
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Welcome, Joytxs! Hope you find good support here. A lot of us are new, I just had rad treatment #5. Hope your center has told you about staying well moisturized (except in the hours right before treatment) and resting when the fatigue hits. A lot of people are still able to do work and exercise throughout these weeks. Aloe vera is good, miaderm is good if you start getting red, cortaid for itching. Spread your moisturizer over the whole upper quadrant of your chest, including armpit and collarbone.
Hey Cherryi3 from another Ohio gal - I'm from Middletown originally, now retired and living in California. I hear you on being exposed to the world. It's so embarrassing! But we do what it takes to keep going.
Credit PontiacPeggy for this great motto: "everything is doable, not easy, but doable"
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Hey everyone! DeeBB, Wow, that is sweet to have the first spot. No one else in the waiting room! Glad to hear it is going well for you so far.
Welcom Joytxs and Cherryi3 ! Cherry, cant say I blame ya on the music
Seeing pic of those exercises helps, I got a list but it was descriptions, I need pics. LOL My PT said if I can only do one stretch when feeling tight or have limited time she said it would be the corner stretch.
I was actually victorious in getting my planning on a disk!! My RO found out they were not giving it to me and went to bat for me, along with the nurse navigator. He also spent a lot of time (completely unscheduled) talking with me. I am actually going to write a formal complaint about the director that was so rude to me. I so appreciated the solidarity of middle fingers, we shall keep em flying whenever the situation arrises!
DWisely, Hope things are going ok with you, and all of you in the Christams rads group.
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Dani444: Yay for the RO, nurse navigator and for you getting the CD. That's great!
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Dani, they must have heard me flip them off, lol. I'm so glad you got your CD. That was inexcusable. Definitely file a complaint because I'm sure you are not the first patient she's verbally abused.
Hi everyone in the December group! *Waves amiably* I worked, had rads, and then a late meeting, so I'm just waving and wishing everyone the best possible treatments and no side effects. Hugs!
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Dani444 - SO glad you got your CD! Hurrah! Vindicated!
All - Started the ‘final 5’ boost sessions today. Once set up, the actual treatment is much faster, like 30 seconds. There is a piece of equipment much closer to the breast, but they said the radiation impact itself is a lot gentler than the first 25.
I met with my radiologist today as they check your skin before the final boost. Anyways he actually said that I was faring really well, and in fact, my skin looks even better than what he sees with most people who even fare well through treatment and how things are at this point in time!
He did advise for me to use only the recommended lotions (aloe vera, Miaderm, aquaphor) for 2 more weeks after the last treatment, then I can switch to my regular lotions.
Since my skin has held up really well according to him (even with the one blister! But it’s super small and not open), sharing my regimen:
1. 100% pure aloe vera gel morning and night (I use the Fruit of the Earth brand - I don’t mind the stickiness as it feels like that moisturizes more).
2. Miaderm immediately after radiation treatment. I put it on when I go to change back into my normal clothes.
3. Hydrate. Not an insane amount but I bring a bottle of water with me to treatment and Domino and I have some water before I go in.
Here’s is today’s picture of Domino! In the exam room with me.
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I had my first treatment today!
It took ages because they did x-rays first. By the end I wasn't sure how much longer I could hold my arm. The team was two young very nice and competent seeming women, and they said they would be be with me in general, so I feel good about that.
I'm at Sloan Kettering and the place I had surgery was super nice and the breast center building is great too. But the radiation and I think chemo is in their general hospital and it's by far the least nice. No fancy coffee machines with hot chocolate, kind of crowded and actually feels like a hospital. Which is fair, and I know it's not the most important thing! But I was kind of spoiled I guess, by their newer buildings.
I had to do yet another pregnancy test, which is just so *grating*. I'm on a hormonal IUD and haven't had sex in longer than I care to think about, but apparently that's not good enough for them since I'm premenopausal and have all the equipment. You know what, I think a post-menopausal woman who's actually having procreative heterosexual sex has a higher chance of getting pregnant than I do while having no sex. But apparently the medical system disagrees...
Overall though I guess I'm glad to done waiting to get started and have actually gotten started.
Pebbles I love your dog pics and I love that Domino comes to treatments with you! It makes me want to get a little dog! Now it's just me and my cat though, and she's terrified of dogs something ridiculous.
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Hi Salamandra,
Way to go on having that first treatment behind you! It gets much faster and more routine.
Hope your treatments go well!
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salamandra,you made me laugh. I’m 51 and haven’t had a period in four years. Haven’t had sex since pre diagnosis and they wanted to give me a pregnancy test. I laughed and signed a paper denying the test. I don’t know about you guys but I can’t stand the front close cotton bras I bought for surgery or sports bras or even shelf tanks. Finally found a solution at Target for you Gals who can do pullovers. Hanes T shirt soft wire free in a size up. Cute too with a lacy racer back. At my facility there is a picture of a Caribbean beach glowing from the ceiling above the table. So I’m basically sunbathing topless every time. Without sunscreen. Tomorrow I will request Bob Marley for my music.
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Cherryi3, Bob Marley radio was on yesterday during my first treatment. Speaking of bras, I have been wearing no wire bras from True and Co since my surgery. I am a DD and normally wear underwire but love these. I got a couple of no wire hook up the front bras from Lady Grace and I hate them. So hopefully the over the head thing works.
Sorry for all of you having to attest to your virginity. That is awful.
So, showed up today, had acupuncture, quick lunch. And went down for treatment and it was a little chaotic and nothing was moving due to a system wide computer outage that went beyond the hospital. Waited for a couple of hours but in the end no radiation and another day tacked on to the end of the schedule. I was pissed but philosophical. Finally went to work about 3. At the moment I am thinking radiation will mess up work more than chemo.
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Hi all!! Just finished my 7th if 19 treatments. So far it has not been too bad. My skin is a little pink but I have been using calendula ointment and Aquaphor religiously. Not sure why but I have been nauseous since Sunday. RO says he doesn’t think it’s from RADS or Tamoxifen. I feel that it has to be something related to treatment. Also, I just got my first period since starting Tamoxifen. Maybe it’s just hormonal? Never had this before. Has anyone else experienced this? It’s wiping me out!
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Dscherr - I also had nausea the first week or so of my treatments. My RO didn't think it was related but I know it was. In my Oct Rads group thread there were others that had a similar experience with nausea, so it does happen. You're not alone.
Oh and all ladies who had to pee in the cup, I'm in the group too. It was annoying. Especially since on my first treatment, no one told me I'd have to pee before we could get things underway. Soooo as I was waiting for them to call me back I had to go of course and naturally went to use the restroom. While I was gone, they came for me and of course I wasn't there. They came back in a few mins only to tell me that "Hey, by the way, we need you prove you're not prego....". I literally rolled my eyes, was unavoidable, and said, "Hmm wish someone had told me that 5 mins ago. I unfortunately just went." I kid you not, they made me wait an hour until I could pee and then wait for the lab test and then things began. Very annoying. I wish they had offerred me that paper to sign like they did for you CherryI3. No one said that was an option and I had no idea. Guess I know for "next time" if needed..knock on wood.
Oh well, makes for an interesting tale I suppose at this point.
Salmandra - Glad you are on your way! Good luck!
Pebbles - Fingers crossed your skin continues to fare well on this home stretch!
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Its strange how the facilities vary so much. Mine's in a hospital, right next to the emergency room, and since they're doing construction at the main emergency entrance, we share an entrance for now. I always have to be prepared to jump out of the way if the paramedics are bringing a stretcher case in while I'm coming or going. The radiation waiting room looks like any doctor's waiting room, just chairs against the walls, a few old magazines, and a TV on the wall. No coffee, not even water available. Once the tech calls the patient's name, we go through secured doors to the unisex changing area, which is three cubicles with folding doors and a small padded bench in each - looks like a store dressing room. If there's a few minutes' wait, we just stay in the cubicle once we're changed. There's also two bathrooms in that area. I've only had to wait a few minutes one time. There are three technicians, all quite nice and professional. It took awhile, but I kind of appreciate the minimal atmosphere. It doesn't scream CANCER PATIENT, it just looks like any outpatient facility.
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Salamandra - it will be quicker after this, no more X-rays checking. And your post had me cracking up! I'm also pre-menopausal and never had to do the pregnancy tests before radiation. Weird. Anyways get a dog that gets along with your cat! Wouldn't that be ideal? :-P
Cherry i3 - your post had me smiling too! Enjoy the Bob Marley music tomorrow.
Tigerlily - I can't believe you had to wait that long. :-O At least you got one thing productive in with the acupuncture treatment. The computers went down on one of the days at my facility too but they had it back up and running in 15-20 minutes so it was just a longer wait, but not no treatment at all.
Dscherr - When did you start tamoxifen? Here's what's interesting, my oncologist said it was OK to do tamoxifen and radiation in parallel, but I'm not taking it yet because my radiologist didn't want me to take tamoxifen at the same time as doing radiation. Not because there were any issues with the combination, but he said because he didn't want me blaming side effects of tamoxifen on the radiation. He preferred to keep them separate and said he'd follow up with the onc for me to let him know. So I haven't started tamoxifen yet, it's interesting how different hospitals have different methods! Maybe you can ask about holding off on tamoxifen until after radiation completes? That's why I'm doing, and I think some others on this board, doctor recommended.
Spoonie - thank you! I can't believe I'm the only pre-menopausal woman who didn't have to pee in the cup. Maybe they forgot... but clearly I'm not pregnant as that time of month just came today (cramps! TMI, sorry).
egregarious / alicebastab / wised / deebb / dani444 / purplecat / joytsx and everyone else on this forum - just sending waves and a hello.
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Good morning all! I'm pre-menopausal as well and I didn't have to do the, peeing in a cup thing.
Salamandra, It will be faster after the first one. My appointments are 8:00am and I'm done by 8:15 usually.
I love all the dog pics! I have three rescues; one is 14, one is 4 and one is 2. I love all their different personalities. They always make my day brighter when I get home.
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Day 1/33 is in the books. I also am premeno, but no pregnancy test. It took a little longer today because they were running behind. I went back and sat in a small waiting room that was just for those waiting for treatments. It was steps from the treatment area. When they came and got me I was taken into the room and that is where they had a changing room. Put the gown on, opening in the back. after they got me lined up they made sure to cover my "good breast" with a pillow case and kept the gown over my abdomen. One of the techs actually remembered that I wanted to be covered from when I did my planning CT. So I was grateful for that. I didn't do my creams until I got home but I am just a few minutes from the center. I used my Aloe vera, then some of the "my guys" (the cream I ordered in error:) not a big fan of the smell, it is unscented but has an odd smell. I might order the miaderm you all have been using.
Dscherr, what brand of calendula are you using? and do you layer them or do you do them at seperate times? My PS wants me to use aquaphor at least once a day, so I was thinking of doing that at night maybe.
DeeBB, Those pups are living the life! Love the pictures. I would have more if I had the time and money! I will include a shot of my Leroy from his last birthday. He will be 8 next month.
Hope everyone is having a good day, we are getting some snow right now. 0 -
The dog pictures are great! Good for morale.
Today was my weekly RO visit, she says things are good on the treatment front and I have no worse side effect than fatigue. She wants me to keep up with my daily exercise if I can. It's hard when I'm this tired but will try.
We are celebrating the end of the first week by having hot chocolate. Cocoa Thursday, anyone?
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DeeBb, love your pup's, especially the big bully looking one chillaxin around the pool! 💓
Dani, yeah, the hardest one is over! Congrats on getting this started. You've had a long, difficult journey. If anyone gives you a hard time again, remember we're here flipping them the bird. 🐦
I only have 3 left! My armpit is getting tender, and I'm a bit swollen, but I'm almost done. I keep one of my bottles of 100% aloe in the car so it's nice and chilled because I'm in Ohio. I put that on directly after tx. I come home and put a thin layer of hydrocortisone, then a layer of calendula cream. I keep the calendula in the fridge. I bought one tube of miaderm for $30, but have since gone to a more generic calendula cream. I haven't noticed a difference.
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Hi Ladies,
Thank you for the welcome. Yesterday I had the CT and the marking. Tech told me it might be the 17th before I start treatment because there was planning by the RO and then I had to come back for the tattooing and simulation (?). She then told me I had 33 treatments because I had lymph nodes that were positive. Then she told me I may have to do a breath hold technique? Does anyone know what that is? I was visibly upset as I had no idea what to expect and she asked me what was wrong. I told her I am just so ready to get started and finished. Deductible and out of pocket start again on 1/1 and well, I had hoped to be done. Forgive me for whining. It's hard to talk to co-workers or friends about this because they aren't going through it so I just don't talk to anyone really. You all will be my sanity. DeeBB and Dani444, my 2 dogs are my lovies and don't know what I would do without them!
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All the pregnancy test stories are cracking me up! I had to have one before each surgery, and then another one before starting radiation, so three in six weeks! All negative, of course; I've never been pregnant, never will be, and had no cause whatsoever to think I might have since this whole breast cancer ordeal started, but hey, as long as my insurance company is footing the bill, why not?
Has anyone been feeling hot and cold flashes? I didn't sleep well last night and woke up a few times feeling like I was roasting from the inside. Then a few minutes later I felt chilled and couldn't warm back up. Then hot again. I've experienced hot flashes on occasion for a few years before this, but these feel different, and I've never gotten cold afterwards. I felt fine today, though, and no sign of fever. I guess I'll mention it during my weekly appointment in a few days.
Joy, I am doing the breath holds. It's kind of intimidating when you first hear about it, but they showed me the equipment at my first consultation with the radiologist, and I had a chance to try it and practice during the tattoo/setup and then the simulation. I know exactly what you mean about just wanting to get started and be done with it. It felt like forever between hearing I'd need radiation and actually getting to it, and in all the dragging out it became clear I wouldn't be done before Christmas. That was really discouraging. Then on the first day I felt like I was catching a cold, and didn't even want to tell them in case they had to postpone my treatment.
Day 4 in the books. It's really very quick; 8 minutes in the treatments room, at least half of which is getting on/off the table and being positioned. I doubt that the blasts add up to a full minute's time. My skin looks fine so far, but am I happy about this? Oh no; now I'm fretting that maybe this means the machine isn't working properly and I'm not getting any treatment at all!
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Purple Cat- I haven’t slept well since I started Monday and have the exact same heat at night that you described. Also super thirsty. I will also add diarrhea to the list of good times and a sort of heavy head feeling in the evening. Told my RO and he said it was probably nerves. Hmm
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Hi Wised,
Only three left! Hope things go smoothly for you in the next few days as you start to recover. What will you do with all your new free time?
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Hi Joytxs,
You have every right to get answers to your questions. They may have done this hundreds of times before but it's the first time for YOU. It's not whining, feel free to vent here as we all do! You might be surprised if you ask around your older friends how many of them have had breast cancer. Telling people was super hard for me but since I did they've been very supportive. In addition to venting on here, I have a (free) caringbridge.org page for friends to get updates and leave comments.
The breathing thing is inhale and hold for something like 15 seconds. If you have to exhale sooner it's ok because the machine will click off, then you just do it again for a few seconds to finish up. The first day there's a lot of practice breathing but today for example I only had to hold my breath three times.
It surely is disappointing to have the insurance start all over again at the beginning of January. Medically it seems like they're not in a big hurry to start radiation, but they actually need several days in between the CT and when you get your first treatment, in order to calculate your exact amounts and angles. You can use this time to get your moisturizer - eucerin, miaderm, etc.
Simulation might just mean a dry run? Like trying the breathing thing, but the machine isn't on. I had my simulation the same day as the CT so not sure which part of it was the sim. If they do tattoos they are tiny, almost invisible. Some places use black marker instead. That's what I have - I look like my granddaughter took a black sharpie and drew all over me. It'll eventually wash off.
You can do this, one step at a time. We're in the Don't Want To Do This club, but at least we're in it together.
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I had my onco appointment today a few hours after my last regular zap; just boosts now. She and I both thought I'd be done by now when the appointment was set, but I wound up with the long course. I objected to being on an AI after rads because of my bad arthritis and osteoporosis, so I'll give Tamoxifin a try. I had a hysterectomy years ago, so no worries about those potential problems. She said I could take a break of a week or so before starting. I like that she's willing to be flexible.
Oh, here's my doggie Winslow, who found a new favorite place to settle after I had my nephrectomy in September. Between the lumpectomy, re-excision, nephrectomy, and rads, I've had to sleep with a pillow on me for months! I knew I'd have to contend with hubby's elbows and pointy dog feet.
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Hi All,
It is so good to have someone who has gone through this to share experiences. I should have been on this forum from the beginning!
Purplrcat, thank you for the breath hold info. Never been good at holding my breath, but if it means getting these treatments completed, then I'm up for it
Egregious, your message gave me assurance and understanding. I think sometimes that is all I need when I am faced with a new BC challenge. I've managed to stay positive throughout this journey and I can't get bogged down now.
You women are AMAZING and inspiring. Thank you.
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