Radiation recovery
Comments
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Joan, let us know what the gyn says when you call. Nerve wracking to have to wait till tomorrow to call. Get a good nights sleep, and fingers crossed that they just wanted to say everything's great in person.
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Joan, I am sorry you got this worrisome call. I am so hoping it is nothing serious. I will worry with you and hold your hand as you go. Please let us know what is going on. We are here for you sista!
I am going to be making cake balls for several neighbors as well as the pharmacy staff. Halloween ones. I love the silly holiday decor and have to really be careful what i buy. I love to go overboard! I always put each cake ball in those little candy size baking ups. Every holiday they have new designs. i doubt that anyone really looks at the paper liners, but I love them. Wilton had some cute ones. Plain orange and black, but some with spiders and webs and another with bats. I had to have them all! Then of course the colored sprinkles....I love the different ones! I am making three flavors. Usually I do five but have to keep it a bit simpler. So I will have vanilla/raspberry, chocolate/chocolate, and lemon. Yum! I always have to stock up on chocolate and vanilla chips. Fun! I just love doing this and they are so cute when done. I sure wish I could make a big batch for all of you. Then we would take an ice walk and burn off all those bad calories!
I talked to Elizabeth yesterday, it is like we are old forever friends. She is doing well and we had such a nice talk. She still talks about my dogs and how much she loves them. They are so special to us. This morning Murphy got in bed with us...I had not turned the heat on yet and it was chilly. Chuck was in the middle sandwiched between Murphy and I...then kitty Pistol had to join and lie almost on top of Murphy. He adores that dog. So cute!
I hope everyone has a great day today. I think of my friends here so much. One day we shall meet!
Hugs, of course!
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Hi Ladies
I appreciate all the advice you are giving to those of us "newbies". I will be possibly be starting rads in November. I've heard about Aquaphor (spelling, not sure?) but don't know where to purchase it. I'm in Canada and have never seen it. But, I'm in the States next weekend at DD hockey tournament and wonder if someone could tell me where I can buy it.... drug store? or does is need to be prescribed?
thanks!!!! keep well everyone...not looking forward to burned breast!
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Hi everyone...just reading the thread and thought I would pop in with some comments. I finished my rads about a year and a half ago(25 + 8 boosts). My skin held up pretty well until the last few weeks when it started to get tight and itchy and by the end it was pretty raw. Very sore for a few days but each day was a little better as it healed.
My onc recommended Glaxol Cream (you can buy it at Costco) and I found it to be a great help. Actually I liked it so much, I continue to use it as an all over moisturizer.
Coming out of chemo, I thought rads would be a piece of cake and it pretty much was until the fatigue hit - it was pretty debilitating and took me by surprise (although everyone warned me, lol).
I'm very active and have had a lot of shoulder issues, tennis elbow, limited flexibility and pain on my rads side - I tried a PT which didn't really help and was just resigned to be uncomfortable but then I decided to try an RMT.....best decision I ever made!! I had relief almost instantly and now my flexibility is back, no more tennis elbow and I am pain free so I definitely recommend seeeing an RMT ....they can teach you some lymphatic drainage massage too.
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Hi Bobbin, You can buy Aquaphor in a drugstore. It does not require a prescription. Good luck with your rads journey. We are all here to help you.
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Joan, I feel so bad for you. You certainly are having more than your share of troubles. I hope the news from the gyn will be all right.
I wish all of you could have the joy of meeting Janis, her husband, her dogs, and her cats in person. They are a very special, very welcoming group. I miss them already and it has only been a week since we saw each other. Also, I can tell you that her cake balls are every bit as good as they sound.
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Glaxol is the way to go....I had 16 rads and didn't even get slightly pink...use it twice a day and right after your treatment and continue for 2 weeks after you are finished. I got mine at the Loblaws (SuperStore) pharmacy if you aren't near a Cost Co. It was a huge jar and I still have lots left.
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Bobbin,
Glad you joined us. Aquaphor does work, but is really really really messy. Think Vaseline. Most of us found almost anything was easier and better to use. I recommend aloe Vera. Make sure it's primary ingredient is aloe though, as some brands just contain aloe. Trader joes sells a good one. Remember during rads to eat extra protein, exercise as you can and rest when needed. You'll do fine....0 -
I used 99% aloe right after treatment for the burn, then calendula throughout the day. Smells nice and not greasy. For me, a no paraben/no phthalate product was important. Good luck!
Fighting a cold, taking zicam, who knows what bad stuff is in there. I must have gotten this cold from Joan
. I hope you've received good news and that you're feeling better Joan. Oh, I hope everyone has fun plans for the weekend. I am looking forward to some SLEEP. Woo hoo.0 -
SAB, spoken like a true Californian....hey, my week end is going to be putting all outdoor things away for monster storm.I got my 3 new hurricane lamps from Amazon today - came in 24 hours and cost me nothing in postage. Easier than going to store. I got a new corded land line phone and enough dry foods to last a long time. We have gas stove so can cook and gravity-fed water if power goes out. We got a kerosene heater if we absolutely need it to keep warm. They just declared a state of emergency from DC to NY. Well, my kids are spread from DC, to NJ, to CT with me in the middle, and my grandson in NYC. One or more of us will get the brunt...don't know who yet. Tomorrow I will checkout the ocean surf which usually starts building when a storm is still 700 miles away. I am less than a mile from the bay, and less than 2 miles from the ocean; but my house is elevation 20 feet so I don't usually flood. The streets can flood and hem me in, though. My new roof and gutters will get a work out.
Now, after 4 unanswered calls to my gyn office, i finally got a human and she said she had no idea why they called. The good news was, my test results were not in yet so it can't be a bad test. Yay for now. Finally, she called back and left a message that I am to return there for another UTI test when I finish the antiBs. I feel normal for the first time in three weeks and am learning the art of rest. I couldn't sleep last night; had to have my iPod playing ... since rads, I sleep with my iPod when I am anxious. The song I listened to always remind me that I can do anything for a short time.
Thanks for your concern and kind words. I never want to be a sickly or down and out person....it was never my nature. But here at BCO I feel I can voice my fears which I can't always do with family.
Elizabeth, welcome back! So glad you had a good trip and nice visit with Janis. So, there really are cake balls, huh? sounded too good to be true.
Janis, we must plan a reunion and bring lots of decadent food. when we find out who can come, we can pick a place that is in the middle. Or, just come to NY and stay w/me.
I was in Michael's craft store tonight and saw those little Wilton cups...you are right - they are irrisistable. But I resisted -- was getting fondant for DGd's princess Belle doll cake that I have been commissioned to make. Her BD is 11/2 and I just hope I have power to make the cake and gas to drive it to NJ. Actually, I hope I can figure out how to make it. i used to be a prof. cake baker but am rusty.
HUGS to all...and where is KATE??
Joan0 -
Welcome to Bobbin and Marjie...
Bobbin, My RO would not approve anything but Aquafor and prescription XClair and an anti-itch cream.
So, I used the aquaphor and it is messy but it worked for me. I bought cotton camis that were inexpensive. At the end of rads when I got boosts, I had permanent marker on me which the Aquaphor kind of disolved. It got messy, but not impossible. I didn't put on the Aquaphor until right after my morning rad tx. I had an itchy rash but it cleared within one week after stopping rads.
I wish you well with your treatment plan.Marjie, I hope you don't get too much of the outer bands of the storm next week.
I also had pain in my shoulder and arm during and after rads. I am good now, am out of rads 10 months.
Overall,it was not a terrible experience, except for lying still and making the commute every day.
Best wishes,
Joan0 -
I'm just checking back on this thread after being away from around the time the format of the website was updated. I see some friends here from the May 2011 Radiation Threads. I hope everyone, old and new, is doing well. Good luck to those of you currently going through treatments. Sounds like everyone has their favorite creams and lotions. My doctor kept it simple: Aloe Vera (I used Trader Joe's) for the first 2-3 weeks, then added Aquaphor. That's messy stuff. Someone on these boards recommended soaking the Aquaphor-laced t-shirts in Dawn dishwashing liquid. That works! I'm still wearing the supply of soft t-shirts I got at Target as PJ tops in the summer. Thanks to soaking in Dawn, they look fine. I really grew to dislike the Aquaphor during treatment. I made friends with it last month. I had a bad case of chapped lips from a cold so pulled out the big leftover tub. It healed them up in a couple days.
Courage to you all!
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Hi Gabby, nice to hear from you. I still have my camis, but one of the white ones got a little purple from the black marker drawn on me during boosts. I still use the camis when I need a break from confining clothes or want a warm layer :-D
It's quiet here this week end....I don't know if I'll have power during this storm....so you ladies have to keep the boards busy.
Wow, a b-i-g earthquake off western Canada and a tsunami warning for now.
Be safe everyone!Joan
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Oh Joan, you are right! I must be California Dreamin'! I get the dunce cap for this week for sure. I was sort of hoping that the storm was news-hype, you know how they dramatize everything. But I see that it is no small matter, and will keep all you Easties in my mind...stay dry and safe.
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Joan, I would love to see a picture of Belle when you are done. Once I followed a recipe that called for baking a cake in a bowl, and then turning it out upside down...so that the bowl became a princess skirt. Then you stick an 11" fashion doll into the center of the cake and decorate it like a dress. It was pretty until eaten, and then my sick family took a bunch of pictures of the doll, laying dead in a mound of crumbs. I'm sure Belle will have a more dignified ending!
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I had one of those doll cakes! Grandma made it for my birthday. I was nine I think. And my dolly had pretty undies painted on...
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LOL, SAB
... I will probably be thinking about that ... I had to go to toy store today and get a 'real' Belle doll so i will have to wrap her legs in plastic wrap and cut a big hole in the cake for her. Am getting nervous - hope it comes out OK. I will send a pic only if it succeeds!Yup, it's windy here...I hope the power stays on awhile....have a few things to do.
There will be different storm effects for different areas....I think we'll get wind and high tides and flooding...heaviest rain to south and west of storm path. I hope it moves off quickly. No work for 2 days....that makes me smile.
Update later...
Joan0 -
Joan I worry about you and Elizabeth and anyone living in the path of this storm. I hope you are all prepared (I am sure you are) and stay safe and dry. It is so dry here I can't imagine the amounts of rain you could potentially get. I am assuming all you gyn tests are normal? You have had a rough time of it, time for all good news!
Bobbin welcome to the post rads group. We have all been there, done that and clearly we all survived. We can walk you through the process and hopefully answer questions and help you along the way. Good luck when you start!
Joan you and I would have fun in the kitchen. This weekend I made all the cake balls. I got about 230 total between the three flavors. Done! Of course I have to make myself even crazier with the addition of cupcakes. I scrolled one site where this gal does all these astonishing fancy ones. Of course I had to try some. I have only made the fillings for them thus far. I chose a 'chocolate chop cookie dough' cupcake, and a knock off of the old Hostess ones we all grew up on. Devil's food with a homemade creme filling and the dark icing. The filling was a real pain believe it or not, with a lot of ingredients. Whew. Today I make the cupcakes, scratch recipes for both. When I do the cake balls I use a mix. Then of course homemade frostings for both. With all this work I hope they turn out well. I am only making 2 dozen of each, so everyone will get a lot of cake balls but just a few cupcakes. Chuck helped me all weekend...so of course have to save some for him.
Stay safe through the storm everyone. If you can post and update, please do!
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Janis and Joan you are terrible influences! Just reading your delicious posts makes me want to go and bake. Your kitchens sound better than an episode of Cupcake Wars! I'm so delighted (and horrified too) to say that my DD the younger has inherited her Grandma's baking gene. Have you heard of Alfajores? I learned about them only when DD baked them for a school project...soft shortbread cookies sandwiching homemade dulce de leche and rolled in coconut. Deadly, in the best possible way. As for me, I must stay strong and stick to my banana and flaxseed multigrain muffins (OK, I confess, I added chocolate chips last time.)
Safely through the storm ladies.
Kate, are you there?
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Please don't even think of putting me in the class with Janis! although, I must admit, she has inspired me to get back into baking. I was craving pumpkin cake so much that I made one - it's huge and we are eating a little each day. pretty good but I'll tweak it next time. It all started when I took an Entenmann's tiny boxed cake to the register and it rang up at $6.49. I said "no thanks" and went home to make my own.
SAB, alfajores sound awesome! But I am a huge fan of whole grain muffins....the chocolate makes it irrisistible for sure.
Janis, I feel almost 100% normal the past few days since the antiBs got rid of the UTI. Am waiting on pap - I caused myself worry by guessing a phone message was bad news. I will try not to do it again; however each of us here has had bad news and it is not easy to not worry.
The strong winds from the storm have arrived. I am prepared....oil lamps, candles in pans of water, plenty of food and a heater....but I do not have a plan if I have to leave my house for any reason. It would be a strange event that would cause that. I have all underground wires so no hazard there. Just hanging on while I have power...enjoying it!
Thanks to all for the good wishes during this storm. Anyone else reporting in?
Hope to send updates later. All this storm news is wearing me down..probably wearing y'all down too
....time to turn off tv for awhile.J
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Joan, you sound so prepared that I'm not too worried about you, but so check in when you can....we all worry anyway!
Janis, you're killing me.....you too Sab. Just thinking of these goodies has me gaining weight. So totally to fair! The only new recipe I've gotten recently is a "massaged" kale salad. I kid you not. You don't have to cook the kale, just massage it for 5 monitors or so in the dressing. It is really good, but so totally doesn't compare to cake balls, cupcakes or alfajores even though I'm not a coconut fan.
Just where is Kate anyway? Think her search for Mr. Right has started?
Take care everyone, especially those on the east coast.0 -
Hi Gals, I'm new to this thread, and it's been 3 weeks since my last confession, oops I mean, radiation ! I used Aquiphor (got it at RITE Aid), and while it was messy / gooey, it did the job. They use it for burn victims, so that's telling.
My radiated breast was actually very warm for about two weeks, then started to get smaller and harder in places. They say it's from damaged cells along with scar tissue forming. My upper chest muscle is very tight, and there is frequent, sharp pains where the wide margin incision was. I wonder how long this will last. I have'nt had my 1 month follow-up appointment yet. - Kay in NH
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Hi Kay,
Welcome to the "other side" as it were! Isn't it a great feeling to be done with active treatment? It sounds to me that what you're having is pretty normal, and there are things you can do to help. For the tightness in the upper chest you need to stretch out that area. These should be relatively gently stretches, but you need to do them often (a couple of times a day). I was stiffest in my arm pit, and found that reaching up to the top of the kitchen cabinet and holding my arm there while pouring coffee helped tremendously. You could try putting your palm on the wall out to your side and gently turning away from it to stretch the upper chest. I'm sure you'll work one out.
For the tightness in the scar, I suggest gentle massage with a good hand cream. You want to do gentle circular motions over the scar. This should help break down the scar tissue that is forming. Or.....get a meeting with a physical therapist, one versed in lymphedema treatment to learn now how to avoid future problems.
I'm a year out of rads and finally went to a lymphedema PT a month ago and wish I'd gone sooner. I think I could have avoided some of the scar tissue problems I've now got.....although that could be wishful thinking on my part.
Good luck with your recovery, and remember that your breast will continue to undergo changes for a year or more after rads....per my MO whom I just saw today.0 -
Hi Kay. Welcome to our little group. Sew gave you great advice. I don't have much to add as she covered it pretty well. It does take time to heal. Some of us developed lymphedema and that presents a whole new list of things to do. Just keep an eye out for it. I didn't develop it for probably 3-4 months after I finished radiation.
Sew how did your Mo appointment go? You must have 'forgotten' to mention it. Best fess up...you know I will beat the whole story out of you anyway!
I spent days making cake balls and homemade from scratch cupcakes and gave tons to the neighbors. I also took a lot to the pharmacy and took a bunch to PT yesterday. Everyone was thrilled. I have had way too much sugar lately. My bad!
Sab......those Alfajores sound absolutely divine. YUM! You have much better willpower than I do. I would eat those before a healthy muffin. I have got to get some discipline! Can you buy it somewhere?
I have been so sore lately and not sure why. My neck and left shoulder are awful. Yesterday after the PT exercises the massage was super painful which is not normal. Why I am having all this pain is beyond me. It is driving me nuts though. All I can think of is all the baking did me in. Now that is really pathetic!
Joan I am getting concerned about you. I hope you still have power and if not that explains a lot. I hope you are safe and warm. Please post if you are able. Big hugs!
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Here's my secret to willpower Janis--donate your big clothes and make sure you can't afford to replace them! I must stay skinny or go naked. Really I love to bake, but if I bake I'll eat. I did eat some of the alfajores, and can't say I'm sorry! I never had anything like it...it was almost like a russian tea cookie or wedding cookie sandwiched around dulce de leche. So much work, but awfully well worth it. Today of all places I found unsweetened organic coconut on sale at Whole Foods, and now it is calling me from the cupboard. It is saying "macaroons..." Your scratch cakeballs and cupcakes sound so good, I bet your PT and pharmacist LOVE you! About the pain, what did the PT say? Could you have slept on it in an odd way? I hope it's something that simple.
Also waiting to hear from Joan. Glued to the news and can't believe my eyes.
Hi Kay. Yes, you will have lots of changes for a while. I hope you have an easy recovery with no lymphedema. Treat yourself extra well for a while with rest, extra protein and creams. You've been through a lot.
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SAB you are so right. I need to focus my energies to cooking and not baking. I absolutely love to bake and of course I eat it too. I have to stop this and start cooking instead.
The pain issue is strange to me. My neck is terrible and I hoped so much it would be improved by now. PT was so difficult and I woke up the next day with really bad pain and a wicked headache. When I went to PT yesterday I told them about my pain and that it was much worse after PT Wednesday. He had a couple of theories, one being that part of the pain could be due to the screws in my neck. He said it might take awhile for my body to get used to them but in time it will get better. He also thinks Arimidex could be the culprit. He said it certainly is a factor. They changed my therapy so I am no longer working with weights or getting massage. Instead they used heat and electrical impulses on my neck. It felt good but I woke up this morning bad again.
Still worried about Joan. I hope she is safe.
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justmejanis, are you taking any medication for your neck? I started on Gabapentin for my degenerative disc disease and I think its helping with the horrible pain I was getting.
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Lights on (Thursday)...internet back today! We borrowed a generator for a night and I made DGd's birthday cake (5 yrs), not knowing if I would go to NJ (gas crisis.) I decided I had to go...she was so disappointed that I didn't go to Disney, and then Halloween was canceled in NJ; so I didn't want to disappoint her again. I knew I had a full tank and could make it there and back (170 miles) without having to get on a gas line. I left my newly powered house to go to NJ where DD#2 had only generator. The cake made it OK but started slipping and sliding in the box on the Cross Bronx Expy. I had all I could do to keep "Belle" from smushing.
No traffic in New York City - guess nobody has gas to drive. I slept in the dark, but it was worth it.
I got home tonight and had internet - and watched the news for the first time. I had not seen any of the devastation or heard the sad stories. I am so fortunate to have only been inconvenienced.
One more day of 9 days off from work....probably back on Monday if they have power restored.
Nite all, and welcome to the newcomers.
Where is Kate??
Joan0 -
I am 7 treatments out and can not wait to cross over to this side. It has been a long hard fight because of my other health issues but I am a fighter. See you all soon.
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Hang in there Bunkie! It will be over before you know it!
Joan, you are intrepid. I'm so happy to hear you are OK and that you are beginning to see a sliver of "normal" again. I hope that others in the devastated area find relief soon.
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