Winter 2013-2014 Rads
Comments
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positiveneg- yes, I have lymphadema and have been dealing with it since May. I wear a sleeve and glove daytime and do compression bandage wrap every night. It has improved a lot, but I will definitely be fighting this on a daily basis the rest of my life. My arm is much improved, but 10 minutes after my glove or wrap come off my hand and fingers start swelling. I am on Herceptin until April and hope that when that is done the lymphadema will improve, but doubt it. How are you doing with it?
I had rad 20 today, 8 more to go.
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I was playing a little game with my rad treatments and I was trying to lay down and and fall into place perfectly so the techs would not have to move me, I told myself that if I did it I would buy a lotto ticket! Well today was the day...10/32. I bought my ticket on the way home. My boss also called and I go back to work tomorrow!
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I have four more boosts to go then I'm done. I am extremely exhausted, it's weird that this is caused by rads.
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Hello everyone! It's been a few days since I've been online...just have had a real fit with depression but I made it through and am feeling much, much better. I'm now half way through with my rad treatments and so far I've got one tata that's nicely tanned and one that is white as snow! But I do have some redness just to the right below the neck area that the RO said today that he was going to watch. That bothered me when he mentioned it, but he said it happened but is wasn't something to worry over, but it did require monitoring. I see him every Tuesday for updates and Q&A and he said he would re-evaluate situation then. Good news - I lost 6 lbs! That's a huge victory for me!
Furfriend: My side effects from Taxol literally overwhelmed my body! Thankfully, they are either gone totally or subsiding considerably (except for the bone pain in the legs)! Amazing journey we find ourselves on but we are survivors!
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PS...so excited to see my hair finally coming in and I see some hint of eyelashes! Small victories are big for me!
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as of today, I'm at 22/33. No side effects noticed until last night when I felt some blister-type bumps...so pretty fortunate. My RO mentioned using photon for the last 5 boosts. Anybody know anything about this? I will start researching as I thought I'd have my weekly meeting with him yesterday to discuss further, but he told the nurse that he'd already "seen" me so we didn't Need to meet. I can always ask to see him this week for details on it too...just wanted to check with you ladies in the meantime.
Wishing you all well and minimal side effects.
BethF7, my eyelashes and eyebrows are coming in now as well. I have one eyelash that I call "the unicorn" since it's in the middle and never fell out....it's sooo much longer than the new ones. I wish the hair on my head was growing faster tho...it just takes time, I know, but patience is not one of my virtues. Lol
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CruiserMay, it is standard to get 5 boost at the surgical site, these are different than the first 28 or whatever you get. I really gave up, trying to understand the difference. My chemo brain has had enough with 6 months of treatments. I told the techs & my RO that I trust them, do what is appropriate. I have 3 more boost, see RO tomorrow, start Arimidex next week.
Everyone ask, what am I doing to celebrate...um...sleep ? Cry..? I am not feeling celebratory, my stage 3 dx still frightens the sh:t out of me. It will get easier with time, but for now it still is hard.
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RedReading -- I kept a list of questions on my iPad and kept adding to it as I thought of more. Let me know if you want me to send a PM with the list -- I still have it saved on my iPad.
Candi -- so glad you are almost there.... I bet if feels so good! Be proud when you step off that table after the last one -- You made it!!
Peaches -- only 8 to go.... Does it feel like a long time to go or just around the corner? The LE sounds like a real pain... So sorry you have to live with that.
Lovewins -- the planets are aligned in your favor! May that ticket have your winning numbers!!
Beth -- So sorry you were feeling blue. BC really takes us on a roller coaster physically and emotionally, doesn't it. I just try to get through each day and find something to smile and laugh about whenever I can. How did you lose all that weight? I definitely need to shed some pounds and can use your advice.
Beth & CruiserMay -- My hair is coming in too, and just yesterday I noticed new lower eyelashes had appeared! Cruiser, I laughed at your "unicorn," because I am not down to one on the top, but each eye has about 6 extra long lashes left on top, and I have two long bottom lashes on one side only. Luckily (knock wood) my eyebrows have hung in there, thought they are looking kinda thin. Funny how soft the hair is coming in, right? I can't stop brushing it with my hand!
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RedReading,
Ask to meet all of your rad tech team before your simulation. I was told I would meet everyone and didn't. Thus I had the surprise of my life when a male tech walked into the room during my sim and started touching my breast without introducing himself! Nor did he introduce himself afterwards. Needless to say I have requested that he not be part of my team.
Also, if your RO says to use lotion, find out exactly where you need to apply it. I didn't realize that I needed to lotion the armpit and around to my back. I found this out when I started turning pink and it got a little irritated. Once I lubed this area it calmed down.
You will meet with your RO once a week so he/she can monitor the condition of your breast. Because everyone reacts differently I'm sure you'll have your own personal questions to ask during these weekly meetings.
Good Luck!
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I have done 17 treatments(including today) my skin is starting to get very irritated in certain parts. Dr said to use hydrocortisone 1%. Does anyone have some other thing that have worked?
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TeamKim, I would love to get that list. If you don't mind.
Checkers, thanks for the great advice. I copied it all down. Feeling a bit better about it now.
Have a great day!
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alfranco- What cream(s) have you been using before the irritation spots started? Did your RO say to continue that, too, in addition to adding hydrocortisone? I think it helps everyone to know what preventatives have been successful for others and since you went almost 17 treatments before the irritation started that is really good. I finished 21/28 today with just some redness, so we both have done well.
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TeamKim- 8, now 7 today, sounds good, but yesterday when they told me 8 I had thought I only had 5 left, so 8 sounded like a lot! Here's what happened- clearly my RO had told me 28 treatments at our first consult and I had even marked the 28 rad days on my calendar. Then I started reading this great forum and since so many posters here are doing 25, somehow I got 25 into my brain . I even looked at my calendar and wondered why I had those extra 3 days marked and erased them, but in the back of my mind I knew something was screwy or why did I even marked down 28 days to begin with. Here I had thought I was over chemo fog, but I guess it creeps back in on you at times! The minute they told me yesterday only 8 more it all came back and I knew what had happened! LOL. I've adjusted and now only 7 more sounds good!
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Thanks TeamKim for starting this thread. Before my bilateral mastectomy, I was told no further treatment would be necessary (except Tamoxifen for 5 years). However, the pathology revealed positive margins and I would have to have radiation (5 days/week, 35 doses). I have my simulation tomorrow with my 1st radiation treatment on Monday. I am anxious from hearing painful horror stories from others. Throughout this breast cancer ordeal I have been upbeat, but for some reason radiation seems so frightening to me.
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Half-way mark today! 15 rads done 15 to go!! I lube 4 times a day and my skin is quite red but not too sore and just a bit itchy at times. I've been using hydrocortisone cream 1% and that has worked well so far. My RO says if it gets really itchy she'll write me a scrip for a steroid cream. She also says my skin looks 'typical' and that's good. She did warn me, however, that the worst is yet to come. OUCH!
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Alfranco,
I have finished 17/28 today with a bolus and I think my skin is doing pretty good considering the level of rads they are giving me. I am red in the middle of my chest and up my neck but no itching or pain. I also have one spot near my armpit that got pretty red. This is my current skin care regime
7:15am - prescription steroid cream (clobetsol), followed by miaderm, followed by aquaphor on the intense red patch
11:30 am after rads- steroid cream, miaderm, heavy amounts of aquaphor everywhere including armpits, neck, breast, and centerline.
6:30 pm- emu oil
11:30 pm- steroid cream, miaderm, heavy aquaphor everywhere!
Drink 2 liters of water a day and take 5000 iu of vitamin D. I plan on asking my doc about vitamin E tomorrow. Praying I just get red. I asked the techs today how they know if your skin will break and they said it usually blisters first. They also thought my skin looked good for where I am at in my treatment . Maybe they were just being nice:)
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Yay! I'm done! 20/20! Feel great! No major skin issues or fatigue😃! Wish you all the best! I know I have some time for the skin to heal and hope I continue with the same results! Now I can focus on my mom finishing her chemo( 1 more) then Mx and radiation! She is doing well for 80!
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Leslie!!!! Yay!!!!!!!! All done. Cool!
Wow your mom at the same time as you? What are the odds on that. You should buy a lottery ticket to celebrate the end of your treatment.
Best wishes and prayers for you and your mom
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lesliecusana- congrats on finishing with no major side effects. Good luck to your mom on her treatment.
I did treatment 20/ 30 today. Beginning to see the light at the end of the tunnel. Red itchy rash but hasn't changed much the last few treatments. Still using RadiaPlex and 2.5 % hydrocortisone cream three times a day. Hope to do well the rest of the week since I am headed to the lake this weekend.
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Peaches12- I have been using the radiaplex, miaderm, and pure aloe. Mainly the miaderm about 3 to 4 times a day. Dr said to add hydrocortisone, so I got cortisone and use it along with my other creams.
Jmfrankel thank you
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congrats, Leslie! Way to go. Do something special for yourself.
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Hi, joining in the Winter Heat group:) I'll be starting on Monday 2/10. A little nervous, everybody says rads are easier than chemo..what isn't? My RO was very specific about using only the dispensed Radiaplex. Anyone have any thoughts about that? I am fair skinned and tend to rash up out in the sunlight. ( could have been an extra in Twilight) Im having 33 treatments, would love to hear about some Positive experiences.
Thanks!
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Red Reading -- Here is my list of questions -- hope they help you! Most of these I got from another post by someone else, but I don't remember who!? Just don't want to take credit for thinking them all up by myself!!
--Kim
Questions for Radiation
Will you do the radiation with me lying on my back or my stomach?
Is partial breast irradiation an option for me? If not, why?
Is an accelerated schedule an option for me? If not, why?(On both of these if it is because they don't offer it you may wish to seek care elsewhere if you are a candidate - Stage 1 no nodes)
How much radiation in total will I receive?
What type of equipment will you be using? (IMRT, 3D)
What will you do to minimize the amount of radiation to my heart (more of a concern if your cancer is on the left side, like mine)
Do you utilize breath hold to minimize heart exposure?
What is the risk of second primary tumor from the radiation?
What are the possible side effects of each treatment option, both in the short term and the long term?
What can be done to relieve the possible side effects? (burning, fatigue mostly)
How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
How long after treatment will I return to normal activities?
What is the risk of recurrence if I don't get radiation versus if I do?
What is the survival rate if I don't get radiation versus if I do?
If I get radiation and then get another cancer in that breast I will have to have an mastectomy because you can't usually get radiated twice in the same area. There is a study showing that older woman may not need radiation (if early stage, no nodes). If I don't have radiation and it reoccurs I could then have a lumpectomy and radiation. Explain your rationale for doing radiation now?
Will you be able to accommodate my schedule (work, travel time, etc.)
Can I take vitamins during rads? Biotin?
MO wants to start hormone therapy during rads -- thoughts?
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Jmfrankel, I'm sorry to hear you're getting such skin problems - it'll be interesting as to what their theory is about your arm. TeamKim I hope the doctor is wrong about the blistering and yes stretching is a good idea. Tomorrow I'm also going to call the pain clinic at the hospital. Might be time for a cortisone injection again too. RedReading I wrote down questions as I thought of them and took the list with me. Otherwise, I'd never remember what to ask.
This is day 3 and I was pink on day one! But my breast has never gone back to normal color since I reacted to steri strips a month ago (that's what the theory is anyway) so that's probably why. My scar is definitely redder today. Funniest thing is since I had that rash from surgery, when I take off my shirt and get cold, my nipple inverts and the areola turns yellow and crinkly. Anybody else get yellowish and shriveled like that?
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Peaches -- Seven sounds better than 8! One day at a time!! You are almost there!
Michelle46 & oconnor2450 -- Welcome to the Winter Radiants! We wish you didn't have to be here, but we are glad you found us. Rads scares a lot of us, and like a lot of the BC journey, it can be hard to share feelings with those around us. You have come to the right place to ask questions, vent, rant, or just reach out for a little support. We are in your pockets, as we like to say! If you read through this thread and the fall rads thread, you will get some good advice from the posts and you will see lots of positive stories (like Miss Leslie just today) who get through rads with flying colors!
Yes, Oconnor, At least in my experience, rads is WAY easier than chemo (but you are right, what isn't?). Mostly it is just the chore of it...everyday.....drive there....undress...get on the table for the healing light....lube...get dressed....drive home....lube,lube,lube.....it wears you down, and that's the fatigue. I feel like chemo made me yucky in a systematic way, whereas the discomfort I occasionally have from rads is localized and that makes it a little more tangible, at least so far.
Jmfrankel -- thanks for giving us the detail of your skincare regimen. Glad it is working for you, especially with the bolus giving your skin more of a direct shot.
Checkers -- Yay!! You are over the hump (and on hump day!) It's all down hill from here!
Leslie -- Woooooo Hoooooo!!! Pocket party (and we will add another twirl to the happy dance for your dear mom!). Mom must be so relieved that you are done with tx, and sounds like she will put it behind her before long as well. Be proud, warrior! You did it!!
RISteadman -- glad to hear no new SEs.... Just 10 more to go!! Enjoy the lake. That sounds fun.
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Kim. Thank u so much for the questions to ask. I copied it all down and will ask every darned one of them. I appreciate you taking the time to do this. (((hugs)))
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Michelle and oconnor- I so agree with everything TeamKim just said. Really, you can't even compare chemo and radiation side effects, plus chemo is for a much longer time and the SE hang on and hang on. Rads become very routine and the actual treatment time involved for most of us is very short. I am in and out in 15 minutes and that includes undressing, lubing after the zapping in the dressing room, and redressing. Sure, all of our effects from the rads differs somewhat, but preventative creams and prescription creams if you do get burning, itching, or blisters are available. It's normal for everyone to relate their problems with the treatment if any, but if you really read carefully it looks like most everyone is getting good help from their RO when they need it and living a pretty normal life contrary to what most go through with chemo. I've been super lucky so far, after today I only have 6 rads left to do, and have had no more than some skin discoloration, nothing else. And I'm certainly not alone with that. Be relentless in having your questions answered, gathering information, following instructions, and creaming creaming creaming (if your RO allows it).
This forum is an amazing resource to learn what works for some, what works for others, and to realize you are not alone on this journey. Good luck, relax, and you'll get through this just fine. First time is scary, but after that it all becomes a daily routine which can be tiring, but this too will end. (=:
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Today is 7/13. So far no burn or rash, but I have been using a vitamin E lotion they gave me plus Aquafor. I saw the RO yesterday again and asked about creams for future SE. the nurse had said hydrocortisone cream, but he also mentioned radiaderm. Anyone using that? Only available on Internet for me. I ordered it, but can return, so appreciate any comments. I would be at 11/16 rads before it arrives.
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WOOT WOOT Leslie and best wishes to your mom!!
Welcome Michelle and oconner. You'll get lots of advice and support from everyone here. You can also gripe and complain all you want because we all understand!
Boob looked great this morning until I put on the cortisone cream and Remedy cream, Then it turned spotty and started to itch. Wondering if it's a reaction to both creams being used at the same time. I'm going to try them separately and see what happens.
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Michelle!! I am so glad to find someone in my situation finally. Our situation is quite unusual. Having positive margins following a mx for dcis and then having rads. I have a lengthy story to tell and am starting a new thread today and hopefully I will hear from you there too. I am scheduled to start rads on Feb 20 (a Thursday??). I have been following these gals for quite some time and it has given me much personal support and helped with my treatment decision. Most experiences here have been very positive. I will start to post here and contribute during my experience as well. I am so glad to have all of you with me.
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