Starting Radiation in May 2017
Comments
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Nancy-It was a compliment!
I appreciate all of the specific information that you posted during your treatment since our treatment plan is similar.
MJ-I am so glad that you are down to single digits!
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Congratulations Rose!!!
It's been 3 days since I finished and I'm pinking up quite a bit. I can now see the perfect rectangle that was my radiation field, where I could never see that before. I'm not too uncomfortable, but I did use some Miaderm on it this morning and still using cornstarch. What throws me the most though is that the breast is noticeably smaller and the nipple is at least an inch higher than the other. It looks really odd in some clothes. Does that stay that way???
Peetie: Thanks for recommending the Cortisone 10, it's working! I tried some other generic ones I had and it didn't really help. It's still a little itchy, but the bumps are almost gone.
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Nancy618 - I think how you are feeling is normal. My son had cancer, dx at age 4. I remember vividly when his MO looked at me and said "we will see you in a year .... he is released to the care of his pediatrician". I knew after weeks and months of being under constant care for so long that this was a good thing .... but I was scared to death. I wanted to know he was being seen and cared for. I think it is the same for us. And I have never been one to cry very much .... right now, I tear up about everything. I keep wondering when and if I will ever feel like myself again. I know from my son that people assume once treatment is over - you are finished. They do not realize that this journey never ends. The hair may be back etc., but the long term side effects remain and the fear of the what if's come around. I do ok with my son now, but he has yearly mri's and the days leading up to that are not fun. I know how quickly things can go from being fine to being upside down.
Hugs to all of us! Thankful for each of you!
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ITCHY!!!
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I'm hoping others can offer their thoughts. I am currently in radiation, Friday was day 20/30 (for the second time) this time for high grade DCIS. I started to develop a strange pinkness a couple weeks ago. didn't think much of it because I burned four years ago with radiation and I also have problems with my immune system which can cause issues. However this has a very different appearance. I did bring it to the attention of my RO. At the time it was faint he said we would watch it. It was a little bit worse several days later. He did not feel it looked like infection when I questioned it and he suggested hydrocortisone. Suddenly overnight Thursday to Friday it worsened and concerned my tech. She called in the nurse who then brought in the doctor (not my usual RO as he was off).
I told him I was concerned that this could possibly be something like cellulitis. He said it would be extremely rare as infection occurs not long after surgery and mine was 2 months ago. He said it never happens strictly as result of radiation. He did not feel it looks like infection and called the office of my breast surgeon oncologist. I went right over as he wanted another opinion. My oncologist was working in a different office so I saw her NP. She was thinking about a biopsy. She put me on an antibiotic & it was not until I got home I started realizing that this has characteristics of IBC. Rashy, internal pain, some itching and dimpling. I have to see my own RO prior to my treatment in the morning to see if I should have a treatment session tomorrow and then have to head back over to the surgeons office to have a re-check. There has been slight spreading after two days on antibiotics and no improvement.
I would imagine this would be rare for IBC to show up during radiation and therefore an infection makes more sense, but is it possible???
I guess my level of confidence is not what it would be because I did not see my own two doctors on Friday.
I am having a hard time waiting for tomorrow and would really appreciate it if others could share their experiences.
Thank you!!!
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Starting radiation in July. Just had CT with mapping. I will be having 25 treatments. No boost since I had complete pathological response with chemo. Is this normal? My BSO had told me 6 weeks. Also, have been told swimming was fine, but then today I was told only water waist deep. Just wondering what others were told. It is summer and my kids and I love to swim!
Thanks in advance!!
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ML1209: Good morning. I have had 25 of 33. I think your BSO was pretty close to correct -- the RO knows his equipment and has latitude to set it at 25
I have been taking Epsom salt bath soaks of over 25 minutes the whole time -- nothing bad to report.I don't scrub the area and use aloe afterward. I just haven't had any pool opportunities, so I don't know.
I was hoping to avoid radiation altogether, but I had lymph node involvement.
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ML1209: You explained it perfectly. Yes, everyone thinks I'm DONE! But as long as I have to keep seeing the MO, the RO and the BS, I'm not really done. And there is always the niggling thought...they didn't see the DCIS on mammogram or MRI, just the IDC. So, how do I know I don't really have DCIS in the left one too? I try not to think about that! And I try to suck up the AI side effects because that's supposed to keep it in check if it is there.
I was told no swimming if the skin was peeling or open. My BS and MO "guessed" at 4-6 weeks. I had 4 weeks. I think it's up to the RO after they look at all the information and the pictures they take.
MJ: I am SO itchy!!! It's 6 days since the final rad and I'm going crazy. Nothing is helping the itching. Cortisone 10 does for a little while, but not for long and I don't want to put it on more than twice a day. And my breast is a bit pink, but the area above where it meets the chest is a funny brown color, the breast and the area under my armpit feels like a sunburn, and my incisions are an ugly dark reddish brown. Do the incisions ever lose that color? I would be very self conscious wearing a sleeveless blouse or dress.
Chloe: I have no experience with what you describe,but I sure can see why you would be concerned. Just off the top of my head I am guessing that this is a reaction from the radiation. Please don't get ahead of yourself until you see the doctors tomorrow!
Leaving on Thursday for 3 weeks at our cottage where there is little or no cellphone coverage and no internet or wifi unless I can use my phone as a hotspot. So, if you don't see me around, you'll know why.
Hang in there!!!
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Hi Nancy- I posted this in another thread for MJ, but hopefully this will be helpful for you as well. You might want to ask your RO about combining Cortisone 10 with Benadryl Cream. I have also been rashy and itchy and that was what my RO told me to do. It has helped quite a bit, the rash is almost gone. I put my lotion on in layers, first the Cortisone 10 (wait 5 mins.), then Benadryl, and last Calendula or Dimethacone When the rash first appeared, she started me with just the Cortisone 10, but after I finished radiation she recommended adding the Benadryl.
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Nancy618- I'm using Mepitel film. I'm on 21 of 30 rads and I'm getting red and super itchy. The reason I decided to tell you about my Mepitel use is that I feel good that my skin is covered. I do scratch thru the film but it is keeping my skin safe from infection from my scratch impulses. The film is very comforting. You can buy 4x4 squares at cvs.
I have worn it since day 1 of rads and only have to change it once a week or less. some pieces just stay and stay. It's a patchwork on my areas I'm getting rads on my breast armpit and superclavical. It stays on wonderfully. No creams needed. It doesn't stop the itch but it's supposed to protect from moist desquamation? Spelling?
Anyhow you could try it if you are going crazy
I wear it through radiation treatments basically a week at a time. It is being done in NZ and in trials
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Thanks for the suggestions Peetie and Elastogelgirl. I'll pick up some Benadryl cream tomorrow. I've actually been pretty good about not scratching.
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Yes - thanks, Peetie. I'll tell my RO about the itchiness on Thursday and ask her about the Cortisone 10 and Benadryl (BTW, is Cortisone 10 different from the hydrocortisone ointment I have? It has 1% in it.).
MJ
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Mexicoheather - thank you! I am planning on the epsom salt baths as well. I did these with my son when he had radiation. Do you let the water cover your breast?
Tappermom - my mapping sounded like yours. I laid back on a large plastic like thing, raised arm above head and they molded it around me and then sucked the air out.
Nancy - the further out you get, the better .... but no, it is never over. With my son, I will start to relax and then I will hear of a child who is ad far out as he is who has relapsed. Then I get sick to my stomach. People can't unserstand unless they have been there.
Chloe - i am no help, but hoping younfind answers quickly!
Does the Miaderm work???? Also, my markings are not permanent - they have tegaderm over them and I am getting red from that! Hope that isn't a sign of things to come.
Hugs all around!
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Nancy618 - Don't worry about the brown skin it will start to fade to a light tan then back to normal. It might take til 2 weeks out before you see it happening. I'm 3 1/2 weeks from my final boost and my skin back to normal. You can barely see my scar at all.
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Yesterday morning and this morning I had several hours of lucidity - free of the bone-crushing fatigue! My fitness instructor at my strength training class commented this morning that I seemed to be having an easier time with the class, which has been difficult for me lately. Did the fatigue come back? It sure did and it's descending now. BUT I felt normal - like me! I'm in there, just waiting to emerge again!
This was a much-needed revelation and relief. Am I red, am I rashy and itchy, am I sore? Yes, I am. But I'm also me.
Yippee!
MJ
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bravepoint: That is VERY reassuring. The incision scars are really ugly right now. I'm at one week out today.
Tappermom: I've used 3 different brands of the 1% hydrocortison, supposedly all the same, but nothing helped except the Cortisone 10. So glad that you feel more like you!!! My bone crushing fatigue from last weekend has abated quite a bit. BUT now my sleeping problems have begun again. It's got to be the anastrozole. It's been 8 days since I started it and this is the exact point where I started having issues with the letrozole. I wake during the night and my mind is racing and I feel really hyper and anxious. I'm awake a couple hours before falling asleep again and having really strange, lucid dreams. I know I can't go on like this for 5 years, so I hope things even out after awhile.
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Nancy618 and Tuppersmom, ask RO for prescription steroids. They work so fast and calm the rash and itching
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Finished rads yesterday - 20 including 4 boosts. Traveled 2,100 miles to do so - had to take a ferry and a car every day. Besides the infection I got - due to an aspiration from BS 2 weeks in, I didn't have much of a problem. Did get fatigued, hoping It goes away soon and I got a rash under my arm.
Volunteers at the hospital make lap quilts and you get to choose one on your last day, also got a certificate and got to ring the bell.
I'm going to focus on getting my strength back. I found it too difficult to work out the last couple of weeks.
Hoping we all get back to feeling like ourselves again.
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So much for that burst of energy yesterday morning! That peak was followed by the deepest valley so far! I had to go to a Rotary dinner with my DH last night and had to fight to work up the energy to talk to anyone. However, I know that energy is in there somewhere - it will come back (but apparently not this morning!).
I'll have a longer rads appointment today as they are going to set up my boosts, which start tomorrow, after my treatment. Then I see the RO; I'll ask her for something for the rash.
Happy Thursday, all!
MJ
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Had my final regular treatment - #28 - today. Then they got me set up for the five boosts - taped a wire on my scar so it would show up in the films. Drew all over my breast like a kindergarten art project! They told me they'll put the wire on each time, take a film, then remove the wire and give me the boost.
MJ
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I am wondering if somebody can comment about nerve pain after surgery and radiation. My BS told me that the nerve pain occurred because they had to cut a main nerve during surgery, as the tumor had invaded the nerve. She said the pain comes as the nerve regrows. The nerve pain started with surgery, stopped about two weeks before the beginning of radiation, and started again after the second week of radiation. My RO told me that radiation awakens nerve pain, but that it would eventually end (no time frame). I am wondering if anybody knows how long the nerve pain typically lasts. I am taking Aleve every twelve hours, and I am planning to try adding Tylenol at night as well. I just cannot fall asleep because every time I roll onto either side (I am a side sleeper) I am instantly awake and in pain. I would appreciate any insight.
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Congratulations Tappermom! You are almost there!! I am sorry to hear about the fatigue! I find that my fatigue and skin are getting better every day, so it won't be long for you...
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Thanks, Peetie! It sounds as though your nerve pain is worse than mine. It was pretty bad shortly after surgery, then calmed down but now I get occasional zingers (including one during treatment today - try to lie still!). I can't speak to how long any of us can expect this to go on. So sorry yours is so severe. Adding Tylenol to your Aleve regimen sounds like a good idea - maybe if you can get on top of it, you'll get some better sleep.
MJ
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Hi Peetie: I was also told that radiation awakens nerve pain. It's making me feel as if there is a breast there -- phantom breast. So I am taking Aleve. If I do not do my stretches, the skin feels very tight and I can't sleep.I had my first booster today.
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mexicoheather,
I bet you lookforward to finishing rads.
It just caught my eyes re your comment about Epsom Salt bath w/o scrub. I have been doing epsom salt daily for about 3 1/2 months now. I only have benefits to report. So in short you are more than ok w epsom salt bath/soak no scrubbing of area of course.
I have a Rad mapping session in 2 wks I should ask RO.
Thanks
Mimi
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Yeah MexicoHeather, you are almost done!! I am now taking Aleve every 12 hours, and I am also taking Tylenol at night when trying to fall asleep. It is helping with the nerve pain, and I have been able to sleep the last two nights. Maybe this will help if you are also having problems with nerve pain, I hope so!
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I was told that I can swim as long as I keep the area covered and wash my skin off after I'm done. Lol (As if I would expose my now little tiny boob.) I do wear a tshirt over my bathing suit and I have had no issues whatsoever. I swim several times a week and did soeven before I finished my rads.
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Hi,
It's been six days since I finished my 20 radiation sessions. I've noticed "freckles" on my breast and have had a bit of itching. My biggest problem is muscle weakness. The fatigue is getting better but today I had trouble climbing stairs. Not out of breath, actual difficulty getting up the stairs. I had to partly pull myself up using the railing. I didn't work out much during the four weeks of radiation due to fatigue and time available. But I don't think I should be this weak. Anyone else have anything like this.
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So had the mapping and my first boost today. 7 more to go. Skin on chest and under my arm is red. I need to lather up and get this cleared up.
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SJI, I finished about 10 days ago. My muscles are very sore, but I think it's from not walking a lot. I'm still very tired. Heard that could last 2 months. The skin on my areola is very dark and peeling. I was having 'zingers' in my breast and nipple last week, but is is better. It is uncomfortable wearing a bra. My skin in general on my boob looks pretty good though. Hopefully next week will start back at the gym.
Goincrazy8, the boost was easier on my breast, so not as bad, but keep applying lotion and drink a lot
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