Radiation December 2018
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I second, or third or fourth, all the good wishes and congrats to Ghostie, Egregious, Sillyoldrabbit and anyone who has finished. Well Done!
And best wishes to all who are just getting started. You can do it!
I have completed 14/20 so I am getting close. SEs are okay so far, but my PT told me today that I am starting to get red. I am taking ibuprofen pretty much all day now, just to get through the shoulder pain of having to raise my arm. (2 PTs are calling it rotator cuff problem with capsulitis, which is a frozen shoulder). My sweet PT who does lymphatic massage once a week and helps with exercises called in an ortho PT today (since I seem to be getting worse, not better) who just whaled on me. Ouch! She knew I was in pain but it didn't seem to bother her. I guess when I finish radiation I will have to see her...and I was told it would take a while.
Spoonie, I love all the research you do. I didn't know about the tightness that might occur in another 6-8 weeks. Geesh!
Do any of you have a "radiation dress" to wear to treatment? A friend gave me one and I wore it today. It gave me a tiny lift and surprised my techs. (I twirled for them!) The dress is kind of too big for me, but it worked. It's very soft and I can wear it instead of a hospital gown.
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To egregious and sillyoldrabbit-
LPLibrarygirl- I am intrigued by this dress. It sounds wonderful. Do you just slip an arm out? How does it work? I like that you threw in a twirl. how fun.
I am hoping this tightness does go away after rads. It is the same area that was sore after my mastectomy FOREVER! I have a follow up appt with PT on the 2nd so I am going to see if she thinks I need something besides the stretches at home.
Raysel- How great to have fewer sessions!! Hope things are going well with you.
I hope everyone else is doing ok.
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Since I posted the paw congrats to the Nov. radiation thread, here's another from mr. otter! Congrats to everyone who has finished rads! woot woot!
And for everyone still going through rads...
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My first session went great today! Thanks for the well-wishes!!
Congratulations to those who finished!! Woo-hoo!!!!!!!
Egregious- thanks for the tip about bringing moisturizer with me to the center. I'm planning to do that from now on. Such a smart idea! I'm very happy for you that you have this behind you!
DeeBB- You're in the home stretch! I am going braless too. It's really a weird thing for me, but I'm pretty sure I'm the only one who knows. I really don't want to irritate things more than necessary, so I'm hoping this may help.
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Hi all. Today was my 7th of 33. I am going at 4:45pm Mon-Thurs and earlier on Fridays since they close early. Tonight when I got home I was really tired. I really hope I can keep my energy up. Saw the RO yesterday and he said no burn yet, but to keep up with creams 3 times a day and remember to put on area between neck and shoulder.
Congrats to all of you who have completed rads! You are warriors and I'm amazed at your strength.
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Soo happy for you guys who finished, G, S and E! I’m right behind you. After today 5 more boosts and done on NY eve. RO was impressed with how well my skin and energy was holding up. Wawa until yesterday. I don’t even want to look at it. Have those little dot blood vessels underneath and very red and angry all over. Also totally useless after 6 o’clock. After rads today I’m going up to Lake Erie to hang at my friends cottage and binge watch Netflix with her. Hope she has a nice cold beer waiting for me
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Hi ladies,
Congrats to all who are done!!
I am at 6 out of 20 radswise and since I also have a hematoma/ seroma mix still there I am thinking of starting with a PT. Any recommendations on what type of PT to look for or can I just go to any PT office locally and they would know about lymp node drainage massage and so on? Is this standard PT practice?
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So the first day without rads.... dancing in the streets....
Ok I might be a little more sore and still SUPER tired but my heart is happy. I was able to get a 20 minute walk, the doctor says gradually work back up to the 30 needed for my bones. I do feel heavier, maybe more swollen? This too shall pass.
Two days ago I was so tired I had trouble holding up a grilled cheese sandwich at lunch. This is a special treat and it felt so pathetic to have to put down the HEAVY sandwich in between bites. I'm that tired again today.
I don't feel like doing much but she said the heavy fatigue should lift after a couple of weeks. My skin is hanging in there, still lubricating 3x a day up to the collarbone and into and beyond the armpit almost to my back.
To those who have finished - cheers! To those who are in the middle - keep going, you can do this! To those who are new - welcome, and please share how things are going for you. This has been a wonderful insta-community. Group hug (gentle)!
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Egregious -- Yay for enjoying your day off!!! Your "heavy sandwich" description made me laugh. Just because it was so descriptive. I hope you never get any bad skin side effects and that your energy comes back really soon!
Nomaddd- I would ask your nurse navigator (if you have one) or someone on your cancer team to recommend a therapist. Before my surgery, they had a physical therapist come and measure my arm and we chatted about physical therapy. I'm still recovering from frozen shoulder on the side I had surgery. I refused physical therapy for frozen shoulder on that side, because it was terrible when I went through it on the opposite arm. My therapist told me that she did not really blame me and she did not do that kind of therapy. So. . .long story to say that I think you will want a therapist that specializes in lymphatic issues. They are not all the same.
I actually fell asleep at lunch today. I couldn't believe it. I don't think it's normal to be tired two sessions in to treatment. maybe I'm just tired from getting ready for Christmas. But, I just fell sound asleep out of the blue. one minute I was awake and the next second, I was out. It was so weird.
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Joining the slumber party of the fatigued. I haven’t noticed things feeling heavy when I pick them up, but I have felt weak and heavy myself. I’ve been working, although leaving early, and have been absolutely useless in the evenings. Lots of couch time. I considered leaving work at noon today because I was just dragging and not really accomplishing anything, but stuck it out and made it to treatment without falling asleep at the wheel. Now I have a four day break from treatment, which sounds absolutely heavenly. Then one more breath hold, four boosts that won’t require breath holding, and I will be done on New Year’s Eve.0
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egregious....I hear you on the fatigue. Seems to hit out of nowhere and feels like moving through mud. Was good today until we went to Wal-Mart to get some last minute things for our family get together on Sunday, now I'm just beat..
On my last day of rads I also got a cortisone injection for my back.....for the past two days I have had bright red rashy looking cheeks. Can't figure out what the hell would cause this. The rads were obviously much lower down than my face, I have had cortisone injections in the past with no issues.... Anyone else hear of such a thing???
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I finished on the 13th, and thought I'd share an update. I'm not having to nap anymore, but that could be because I'm not having to get up at the crack of dawn to get zapped. Those treatments really screwed with my lazy retirement. My skin never got too bad, pink on the side, red on the collarbone, and very pink and knotty-looking around the nipple. It all seems to be slightly fading now. What's really surprising is the discomfort, which I seldom felt during the seven weeks of radiation. I guess it's nerves regenerating, or that's what I'm telling myself. It ranges from uncomfortable to a feeling like I've been attacked by a saber-toothed tiger, very sharp pains that go from the surface all the way through the breast. It hits late at night, so it might be gravity - mine are on the large side and saggy with age. If it hits again tonight, I may switch back to the post-lumpectomy sports bra for support to see if it helps. I had such a long gap between the lumpectomy and rads that my healing process was farther along than usual and the nerves may be offended. It's a bit disheartening after having a pretty easy time with rads. Poo.
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A big congrats to those who completed their treatment! What a great milestone to have reached! Your experiences help the rest of us know what we might expect. Today was day 5 for me. The end of my first week. So I brought the rad onc department some cookies. I had planned to bake but that just did NOT happen haha! I’m grateful to them for their patience and understanding as I bawled my eyes out through the sims and dug my nails into my hands through the first treatment. They were kind, reassuring, and compassionate, so I wanted to express my gratitude a little.
As I am having redness, hardness, heaviness, and burning increasing with each treatment, i asked the doctor today what i could take to help with the pain inside the breast or what he’d recommend for a headache, etc. (I cannot take any NSAIDs and Tylenol only does so much) I still have 20/30 of the pain pills from my surgery, as I just haven’t had SEVERE pain. He wrote out a script for Tramadol, which I haven’t had before. Any feedback on experience with that? I don’t know if it matters,but I have large breasts, had a lumpectomy on left side (so maybe a ping pong ball out of an H cup) so the cup size isn’t noticeably different. I don’t know if that makes rad pain worse since it’s more radiation?
Anyway, I am looking forward to a few days off from rads! I picked up a little pet sweater yesterday and Oliver is not too sure about it...
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HDmom, I can't take NSAIDS either... okay I'm not supposed to, but sometimes I sneak because it's the only thing that reduces swelling for me. I have had tramadol before and it's a very easy to take painkiller. Your kitty is adorable in his sweater. I have a 20 year old cat who is also part Persian, his fur is getting so mad and he won't let me brush him. I would like to get him shave down and then get him a little sweater but I think he would go nuts LOL. Good luck with further treatments I'm sure you're going to do fine.
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Oliver is gorgeous...or maybe that should be handsome!
The occasional and unusual breast pain that I have also occurs at night, in bed. Sometimes it's just a tingling feeling and I attribute that to nerves, but sometimes the pains are sharp. So weird. My skin still looks pretty good after 15/20 treatments but it feels very sensitive, like the skin doesn't want to be touched or rubbed by fabric.
Nomaddd, my RO was the person who referred me to PT because raising my arm for radiation was/still is painful. The PT I have been seeing is part of the Comprehensive Breast Program at my hospital and she sees only BC patients. You will want to make sure the person you see is the right kind of PT and I would think that person should be knowledgeable about being careful of your surgery arm so that there is nothing done to cause lymphedema.
DeeDeeT, I am so curious about your frozen shoulder comments. If you are not going to have any PT work done on your surgery-side shoulder (which I can totally understand) will the frozen shoulder range of motion come back and the pain eventually go away on it's own? The orthopedic PT who consulted and worked on me for about 5 minutes yesterday was brutal so I am wondering if I want to see her. But I need to be able to use my arm too! It's really difficult to even get dressed.
Fatigue! It seems I am done and ready for the couch by 6PM too, and every couple of days I also take 2-3 hour nap when I get home from my treatment. Like others who have posted I think I am fine and I suddenly hit a wall and must sleep immediately. Great grilled cheese story, E! My daughter and family arrive from CA tomorrow for 9 days. I can't wait to see them and so hope that I don't sleep through their whole visit.
Cherry have a fun girls' weekend! Dani I will take a picture of the radiation dress and post it soon.
Wishing everyone a relaxing, restorative weekend.
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Hi all, congratulations to everyone who has finished and thank you for sharing your experience. I will be having 21 treatments starting on 26 December.
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Hi TC, welcome to the thread!
Hope things go well for you next week
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Hi ghostie13
About the cortisone shot. Yes it will cause flushing. Dependent on the amount etc, it may or may not happen. It should go away on its own in about 3-5 days.
I usually don't comment on these boards and just peruse them, I love love love the animal/pet/family member pictures. Good luck to all of you that are going through or completed treatment.
Julie
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Thank you Julie!
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LPLibrary-
Oh yes, unfortunately, I can discuss frozen shoulder. I've had frozen shoulder on both arms now. I had to have three rounds of PT on my first frozen shoulder. It was just brutal. I didn't know any better. During my first round, I got my full range of motion back in about six weeks of intensive therapy. The reason it hurts so much is that the therapist is literally breaking up the adhesions in your shoulder. So, after six weeks, I went home, did my exercises, and in spite of my best efforts, my shoulder froze back up. That's very unusual. But this happened to me. So, I had to back. I did three rounds of PT! I was going to end up with surgery if the third round didn't work, but it did. I don't know what was so magical about the third try, but I was happy it finally worked!
So, when I got Frozen Shoulder in my right arm I just didn't want to go through physical therapy again. I had done enough research to know that no one knows what causes frozen shoulder. They also don't know how to cure it. Clearly physical therapy didn't work well for me. It works for some people, but I was a model patient, and something didn't work. But, frozen shoulder actually heals itself over time. Your body realizes things are okay and released the adhesions. This time, I just did gentle stretches at home. I did get my doctor's approval. I am not some kind of nut, but my last experience was so bad and it kept escalating. My doctor agreed with me and research on frozen shoulder agrees too. The main thing it needs is time.This sounds so relaxing and pleasant. I wish it was. Since you have frozen shoulder, you know the real story. It is very painful. I'm so sorry. I wish there was a shortcut. But, it does get better. It just takes time. For me, it was about a year. I'm still a little tight, a year and half later, but I think my surgery aggravated everything. Ice packs did help some. (((Gentle hugs!!)))
Also, just because I personally had a very difficult time with therapy does not mean it's not the answer for you.
***Just to be super clear, I'm talking about frozen shoulder, not lymphedema.***
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Oh my goodness a cat in a sweater! Love!
Welcome to new folks and BIG congrats to finishing people!
Deedee and Ghostie, that sounds terrible about the shoulder/physical SE. This illness just has so many embedded presents, doesn't it? I hope everything goes as well as it can.
AliceBastable thanks for the info about the days after. I'm really looking forward to being done but it's good to be aware that the SE don't just stop. Anyway, two day break now and then off for Christmas day!
I ended up buying a new-to-me folding bike for a great deal. It's my biggest cancer present to myself. I suggested to the shop that they should try to do some cross promotional stuff with the cancer hospitals. Everyone tells us to to exercise more! What's better than a bike you can fold up and put in the trunk of a car as soon as the fatigue hits.
I'm in awe of those of you driving yourselves to and from treatment. The sleepiness is so real! It's been shocking to me that I'll be biking and yawning at the same time, with my legs moving and the cold in my face. Behind the wheel of a car, that takes real discipline. Stay safe!!
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LPLibrary/Deedee, I have degenerative arthritis in my shoulders and had an injection a month ago it helped. Now that I’m in over the head hold for Rads it’s is causing it to hurt again. How is your pain with overhead position during rads? Is there anything your techs do that makes it at least bearable? I feel for you because frozen shoulder is a tough and more difficult condition to deal with.
At what point did you guys start feeling tired? I was doing ok up until yesterday and went to #8 Rad and came back to work exhausted. Am I being a wimp?
I hope everyone gets rest and love this long weekend and Christmas.
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Hi Joy,
You’re not being a wimp. Rad fatigue is real! I had trouble holding up a grilled cheese sandwich this week. And it’s a special treat, one of my favorite meals.
My fatigue comes on rather suddenly. I’m sort of tired then BAM I have to go lie down
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Hdmom- Love the picture of Oliver in a sweater! He is giving you a bit of a "seriously, Mom!" look
I hope the tramadol does the trick for pain. Salamandra, That folding bike sounds great! And man, this fatigue is real!! I am glad to get a 4 day break from rads but I work 3 12 hour shifts, including Christmas day so I am going to be struggling. My RO had told me at one point that the fatigue was more "in your head" but I have never felt tired like this. It helps to hear I am not the only one having this SE.
TC73- Welcome, and best of luck on that first treatment. You've got this!!!!!
I hope those still in treatment enjoy the break. And I hope everyone has a wonderful holiday. I am thankful for this group.
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Love Oliver's look at his paw mommy while in that sweater lol.
Hope everyone gets a nice break over the holidays! I know for the November thread it was actually really nice to get a bit of a break over Thanksgiving and have a couple days to heal for those who needed it.
Salamandra I'm impressed that you are biking! Rads or no I think I'd be fatigued from that lol. I drove an hour each way... definitely don't miss that daily drive.
Dani - agree, am thankful for this group as well! Happy holidays!
egregious - the grilled sandwich scenario is a brilliant way to describe the fatigue. You paint it well.
Sending healing thoughts to the ladies with the frozen shoulder.
I'm almost 2 weeks out from being done with rads but still lotioning as I did during rads. Radiation burns are healed, area around the lumpectomy scar is a different color than the rest of my breast, lighter, maybe because new skin surfaced? The rest of my radiated breast actually looks fine and back to matching the color of my “untouched” breast. Only exception other than the lumpectomy scar area - right nipple doesn't look like left but hasn't since the surgery, is that normal?
Just hoping it all settles back to normal at some point. Hope everyone enjoys a lovely holiday weekend!
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Joytx-Thank you for your sweet words. Now that it's almost behind me, my heart goes out to those with chronic issues. I'm just can't imagine. I'm very sorry. When I started radiation, I just mentioned to the techs about my frozen shoulder right away. I told them I was almost healed, but still a little tight. Since I am able to reach above my head, it made it easier for them to work with me. All they did was add a wedge pillow to support my arm at the elbow, because I can't completely rest it on the table in the position they had me in. They did not act like it was any problem at all. They have the pillow ready for me now each time. I'm so sorry you have shoulder pain too! But, your techs should be ready to help you with this. Do let them know if you are uncomfortable. They can help you.
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Thanks Dani444 & Egregious for the welcome & encouragement. The hardest part for me has been the waiting - waiting for results & appointments. I just want to get Rad started, the sooner I start, the sooner I finish, the sooner I kick cancers butt, and the sooner life can return back to normal.
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Hi TC,
Waiting is one of the hardest parts of cancer treatment. You'll be in a good routine soon.
The first radiation treatment takes a long time, up to an hour, while they measure and mark you up. I thought I looked like a kindergarten kid scribbled on me with a marker. Good to start using moisturizing cream even now to keep your skin in good shape. 3x a day - Morning (not within 4 hours of treatment), then take some with you to put on when your treatment is over while you're getting dressed, and then bedtime.
If you want to share your diagnosis and treatment plan, look on the left for Settings and then click on Signature.
Let us know how things go for you on Wednesday! The second, third, etc treatments will be *much* shorter. You can do this!
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Hi TC! Welcome! I understand completely not wanting to wait any more! I'm only a few treatments in myself, but I'm so happy to have finally started. It's great to be in the home stretch! We can do this!
Pebbles, so glad to hear you are continuing to heal.
Wishing everyone a very wonderful holiday!
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I woke up from my afternoon nap about one hour ago. The fatigue is real, but I am sorry yours (Joy and others) is starting so early. Mine has gotten progressively more noticeable, and like others it kind of comes on suddenly and urgently. Don't ever think you are wimpy. Look at all our bodies have been through and are still going through. I would say we are pretty amazing.
Shoulder pain-Joy, your situation is so challenging and now the radiation will make it worse. I asked about a cortisone shot but someone said I probably wouldn't want to do that. Like DeeDee they put a bolster pillow under my elbow to support it, along with a mold that they made during my simulation. Most days I can reach back, with pain, but manageable. The problem is trying to relax my arm so it falls away from my body. It's too stiff to relax and flatten. I told them they could use tape if they needed, to try to hold it away, because I can't make it lie down. Luckily, I have only 5 more treatments. Several people have told me frozen shoulder stories..I guess it's just one more thing to deal with.
The good news is that my daughter, son-in-law, and two grandsons arrived yesterday from CA for 9 days. I am so happy! Hoping I won't sleep through their whole visit and hoping their visit will provide the incentive, motivation and energy I need to get through the last week.
Thinking of you all.
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