Winter RADS 2012 Club...Please come join the fun!
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I have radiation this afternoon..will tell them about skin... But until I get there any suggestion. It went from being red to weeping big time and raw overnight. It is so painful I have not got out of bed yet.. Hurts to move my right side of body at all. The wuarters size holes are so f'en painfull (childbirth was not this painful) I just want to cry. I feel like my breast was in a house fire and it has 3rd degree burn and I am losing skin. I have 4 kids to look after (hubby helped with kids this morning) i can not handle being like this... And I am only half way though treatment.
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After read above post.. Maybe they will give me some time off to heal. Will have too see when I go to hospital for treatment this afternoon.
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I know it hurts, uhg! The good news is that if it was 3rd degree it wouldnt hurt because it kills all the nerves. Girl, my top layer looked greyish black like somebody held me on a grill and that was scary. But it peeled off and now is nice and pink.
I splashed cold saline on the raw areas, then topless under the fan. I would not use aquophor right now, it traps in the heat and made me peel worse. I wouldnt put anything on the raw area but silvadine, or maybe destin if they will not prescribe silvadine. I am pretty sure you will be taking a break from rads. Open, weepy skin is a sure way to get one. My doc also offered pain meds. Hope you feel better soon! It does suck but will clear up quickly. -
Yesterday I had my mapping and planning for my boosts at the end of treatment. I have 11 more treatments to go! I am a fairly large woman and my scar is on the underside of my breast. Let me tell you, the position they have me assuming for the boosts is the most contorted I've ever been. Knees up, back arched over a very hard brace thing (can't think of the word) so my head and shoulders are angling backwards, arms crossed above my head and breast taped back so the underside is completely exposed! I just know they did this as a joke! It has to be! I'm sure the techs were behind the wall laughing that they got me to assume this position and I didn't question it! hahaha! Seriously, I'm so glad it's only five treatments like this. I must look ridiculous because that's how I feel.
I'm still having those sharp quick pains you're all talking about. They make me catch my breath and jump. I also have tremendous itching that hydrocortisone isn't touching anymore. /sigh/ It'll be over soon!
On the plus side, my sister is planning an end of treatment party for me the day I finish. She's sending out invites to my friends and family who were the most supportive and we're all meeting for drinks and appetizers after I leave the clinic! It has really given me something to look forward to! I hope you're all doing well!
Jenn
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Sonson, whats a night sleeve? I am feeling leftout because I didnt get one:(
Sachar, glad you arent getting the twice baked option!
Elimar, LOVE the flappers.
Mother4life, hope you feel better and get to take a break.
Jenniferw, sounds like you are getting holistic treatment- rads/yoga combo:) -
Cowpower- The sleeve they gave me to wear during the day is thin and I guess it's something like pantyhose, but the night sleeve is like an oven mitt. It's thick like an oven mitt and has ridges in it and you are suppose to sleep in it (while the thin one they tell you not to sleep in). My insurance covered both garment so I got them both otherwise I would have just gotten the day sleeve. They also gave me something called a breast swell to go over my breast once I'm done with rads...well because it's swollen from rads. It's also suppose to help soften my booby back up and is held in place by wearing it under a sports bra. I'm not sure how it works, but this is what I was told so I'm going to try it. Plus my insurance covered that as well so why not. So two weeks after rads I'm suppose to start wearing that and I will really look like the Michelin man then because it too looks like it could be an oven mitt. I'm going to look so desireable when I go to bed!
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I love the picture, Elimar! I'm so glad to be finished!! The end will come quickly for those following.
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I finished chemo (4 A/C, 4 Taxol) at the end of December and began radiation on January 21...have had 3 treatments thus far. I am wondering what others experienced in terms of fatigue and skin changes - when those happened, were you able to carry on "normal" (as normal as it can get when you have cancer) activities, etc. I worked throughout chemo and plan on doing the same through radiation, although I will be in the office more now. I worked a fair amount from home when having chemo. Thanks for any insights and advice!
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Well I saw the doctor... He did not stop radiation treatment.. But gave me some special medical pads to cover area ( he told me normal gaze is too rough on skin... This product is something they us on major burns were skin is exposed/missing. ) Also now have a cream to put on it and help it heal along with the other things I have been doing. Also told to take pain killers to deal with pain. I also informed doctor about my lungs. I have been wheezing. Was told this was also normal and to keep an eye it.. If it gets worse the will give me something for it.
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Ok Sonson, not jealous anymore!
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Mother4life, gosh I'm sorry you're having such a hard time of it, that sounds miserable.
Thanks everyone for the congratulations! Woot woot! I am SO happy to be done. Just ... overjoyed.
Life, I hear that it can be scary to be all done, but you still have tamox. My tumor was her2+ so I have tamox and herceptin. However, it's not like chemo and rads where it takes over your life. I'm very happy to be getting mine back! Hope you, cider8, and Loving are all doing something fun to celebrate! Sonson, I will keep checking in so I can congratulate you when you are done on Monday! Famous last words, but I might take a little break from being on these boards so much.
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Today they started the boosts. It took them 30 minutes to set it up. Ow, my arm above my head was killing me. But, I have 6 more to go! My breast is still sore but better.
Jennifer-my tumor was on the underside of my large breast and I'm in the same position as I was for my treatment. Maybe they were behind the door laughing
.Cypher, Cider8, Loving, and Lifeonitsside-Congratulations. It must feel wonderful!
Mother4life-I'm glad the doctor gave you something for your pain. So sorry you're having such problems.
Have a good night everyone.
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I'm done!! Thanks Elimar for the pic..very fitting. My hubby went with me today to finish and then we took my daughters out to eat and then Orange Leaf. It feels really good to be done but honestly I'm so tired that I'm more excited that maybe I will start sleeping better.
I started taking 5 HTP as melatonin did not work. I have my fingers crossed that it works. The first night I didn't sleep well but last night I only got up once and was able to go right back to sleep.
When my skin got bad, my RO gave me this tape to put over the bad stuff. It naturally fell off after 3-5 days. It worked really well especially under the breast. I also air'd myself every night and most nights slept with the area exposed.
For those just starting: I can't see my tattoos anymore either. Also, my incisions really faded. -
Mother4Life, I will recommend that you look around on here for threads where women had the wheezing S/E from rads. Obviously your airways are getting inflamed and irritated from treatment and maybe there is something you could get now that would give you relief without interfering with rads treatment. I don't think it is a good idea to let the lungs spend too much time in the inflamed condition because some women are left with permanent and chronic lung trouble after rads. Not trying to panic you, but pulmonary fibrosis (scarring of lungs) is a serious condition. If the lungs get a bad "burn" they do not heal up the way skin does, instead they get scarred and that tissue does not function like lung anymore.
Note to everyone else, please be aware that sometimes this scarring of the lungs does not show up (with symptoms) until 6-12 mos. after rads are done so, for those now finished, please be aware and if you experience wheezing, a dry cough, shortness of breath or pain on your rads-side lung, call your doc right away or even see a pulmonologist. There are measures that can be taken to stop the damage from worsening, but the scarring itself is not reversible.
Pardon my doom and gloom. This is one of the less common side effects, so doctors don't even bring it up to you. Don't shoot the messenger.
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Jenniferw, yes they do put you in super awkward positions. You have to pretty much dispense with any feeling of modesty the whole time. I was hoping to get through the whole experience with fewer than 50 people seeing my naked breast, and I may just have managed it ... barely....
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Bang.. Shot the messenger.. Just joking.Thanks for information. Doctor knows about it now. I also have had bronchial asthma issues off and on all my life.. So doctor said he will keep eye on it... If it gets worse or I start getting yellow green stuff coming up when coughing or wheezing let him know asap. For now he thinks it may be my asthma acting up a bit due to all the stress. Was ordered to take it easy ( hard to do with 4 kids ), resting as much as I can... Using the creams, etc... So hopefully skin and lung get better. Thank to the other that gave me advice to request to see doctor today. I am still very sore and wheezy... But I feel a bit better than I did earlier today thanks to advice, cream, etc.. From doctor and you all here.
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Loving, CONGRATULATIONS! I am so happy for you. Enjoy getting used to some added time in your day- the "rads hours" will fill up fast as you catch up with life again. It has only been a month for me, but I am almost back to full speed, if you dont count exercise!
Mother4life, Hang in there and remember, there is an end to it! So sorry you are feeling the effects. My RO was not big on stopping treatment either, but I did get through, with the help of pain meds and lots of "airing" and saline soaks. Healing was very fast at the end, if that is any consolation. -
You girls are like having a "book of knowledge" by your side..I am trying to absorb all of this information and put it in my memory bank (If I can remember). I finished chemo last week and meet with the Rad Onc this morning to plan my treatment - so congrats to all who have finished = you will be my inspiration...
I will have to come back to you girls as I move along this radiation path---I don't want to do this, is there a way out??? OK chat later.Tricia
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Cowpower- Yeah, nothin really to be jealous about looking like the Michelin man! You aren't missing a thing...if anything you are sleeping better since you don't have to wear this damn oven mitt to bed every night.
Mother4Life- I'm glad you got to see your doctor, but I'm so sorry you are having problems. I hope your skin heals up soon.
Cypher- Thanks for thinking of me, but I totally understand if you want a break from these boards! I think you've earned it!
fgm and JenniferW we should all be finishing up close to the same time right? Aren't we all getting the boosts now? My RO said it's actually less radiation than the regular treatments so hopefully our skin can start to heal just a little. I never even knew my skin could turn this color! And at least they are leaving my clavicle alone now so that can heal.
Elimar- Thanks for the information, but you've just scared the hell out of me too. I know you just want us aware of this little fact, but it's just one more thing to worry about down the road. Just when you think it's all behind you...you realize it's never really all behind you. It's going to constantly stare you in the face whenever you feel something isn't quite right with your body. Your going to wonder is it back? It's something we have to live with for the rest of our lives and I hate that. I hate what it has taken from me. What you said didn't bring all this on, it just brought the subject up so I don't want you to think I'm blaming you in any way. I blame cancer...I hate cancer. I even hate the word. It's so hard to say out loud. I have cancer...or had cancer. Cause by God that sucker is gone now! They cut it out of me, then chemoed the little fuckers that may have wandered around in my body, then radiated what may have been left and I have to believe that there's nothing else there. For my hair's sake and my body's sake I have to believe that there's nothing else there.
I'm sorry if the f bomb offends anyone, but it's the perfect word for those little cells that may have wandered around in your body looking for another place to land. You have admit it...it's the perfect word. Ok, I'm done.
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sonson, I can't even begin to tell you how much I hate cancer. At the very least, it runs our life for about a year. I have never been too good about anyone or ANYTHING telling me what to do, so this intrusion really ticks me off. The one speck of good news here is that it IS possible to get to a point where B/C isn't the top thing on your mind every day. It takes a while, but once you get to that point you can feel more like your old self. Everyone says "new normal," well I didn't want to settle for that, I went all out for OLD normal and I got pretty darn close.
My cancer "journey" is still going on (with a new, non-breast related primary) but even so I feel like my B/C drama is OVER. I mean I feel B/C-free until they tell me otherwise, and just live accordingly. Yeah, I have a few check ups now and then for it and I try to sail thru' them on mental autopilot, not to give them too much time of day. B/C has already had enough of my time.
On the other hand, maybe there is nothing that makes you forget B/C better than getting a NEW cancer. That's just my ironic sense of humor talkin'.
Waaah! -
Jennifer, thanks for the laugh! I was trying to get a mental image and almost spit my coffee in the waiting room!
Lol@cowpower with the rads/yoga combo! You ladies are a trip.
Mother4life, I was also concerned with the wheezing so glad they are keeping an eye on it and hope yoir skin heals up quickly.
Saw my onc today. He said with a skin recurrence he considers me between stage 3 and 4. I said good, that means I don't have a stage. He didn't laugh. Poor guy, I wish I could cheer him up. I worry about him sometimes.
21/25 done! Radonc cannot feel or see anything left of the recurrence. It never showed up on a PET or in tumor markers. Hopefully on to boosts the end if next week!
Everybody have an awesome day. :-) -
Jennifer, thanks for the laugh! I was trying to get a mental image and almost spit my coffee in the waiting room!
Lol@cowpower with the rads/yoga combo! You ladies are a trip.
Mother4life, I was also concerned with the wheezing so glad they are keeping an eye on it and hope yoir skin heals up quickly.
Saw my onc today. He said with a skin recurrence he considers me between stage 3 and 4. I said good, that means I don't have a stage. He didn't laugh. Poor guy, I wish I could cheer him up. I worry about him sometimes.
21/25 done! Radonc cannot feel or see anything left of the recurrence. It never showed up on a PET or in tumor markers. Hopefully on to boosts the end if next week!
Everybody have an awesome day. :-) -
Cypher, I agree! I laugh at some of the new techs I meet when they try to preserve my "modesty." I just tell them that I have no problem flashing anyone and I just drop my top. Frankly, I'll show it to anyone who wants to see it, medical professional or not. It's a badge of honor!
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Shachar, glad I could give you a little levity in your day. All I could do while laying there was laugh. Then they took PICTURES! I was sure they'd end up on Facebook or Twitter! haha!
Sonson, I just love your post! I am not offended one bit by the language, as I dropped the F-bomb about 27 times when I got my diagnosis. I sat in my home office, by myself, after hanging up the phone (I asked for a phone call with the results), and then I just swore for about five minutes straight. Your words are true and honest and I appreciate it.
As for my last day, it's on the calendar at February 6. I will start boosts on January 31 and will have five. I can see the light at the end of the very long tunnel. God help if it's a train! But there's a glimmer and I am headed in the right direction!
Everyone have a fantastic day.
Jenn
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Finished radiation yesterday! My tech told me congratulations! You're graduating! I asked if they could play Pomp and Circumstance - LOL. My skin has held up pretty well - I had 30 treatments - the last 5 were "Boosts". My under Boob is sore - and peeling and so is the area near my underarm
My shoulder is stiff too - anyone else had that? But I did sleep on my stomach a bit last night - big deal for me I am startting Arimidex on Monday. Anyone else taking that????As for lotions my niece sent me some lotion and wash from Lindi - it has worked so well. I got some cooling tape from their line from Amazon. My RO hadn't heard of it but said it was OK to use. My neice workind in marketing for Radiologists and got info on this there. So it really worked for me...
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CVMarilyn- Congrats on being done with radiation! That's wonderful news!
Elimar- I think you are a strong person for dealing with two types of cancers. I know it has forced you to be strong, but you have also faced it with humor and most people don't or can't do that. I applaud your attitude and can only hope that if I'm ever faced with your dilemma that I can be so strong.
Not much longer Jenn...not much longer. That light is getting brighter and brighter!
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Congratulations to everyone who crossed the finish line this week!!!!
cvmarilyn, my shoulder soreness has cleared up pretty quickly. I only have a little bit of healing pain still happening in my pec and breast I've only been finished a week. I'm taking tamoxifen.
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I have appointments with two RAD docs on Monday. I hope I can make both appointments so close together.
Any questions I should ask?
Also I want to pick up some cami's or order them this weekend. ANy clues as to were I can get some? I'm around a 3D, one boob smaller than the other. The surgery boob with the lumpectomy is smaller of course. I just want something to wear that's not too pricey and won't dig in that I can toss later. I've been reading your posts and it seems like with the goop and the redness, burning, pain, etc. I will need something.
I'm not going to take a shower today and I'm going to a free art show.
Drinking green tea and eating oatmeal as I writing getting ready for the next phase. It feels like a freakn vacation for my body with no chemo or pneumonia making me feel like shet. 
love you all -
Congratulations to all who are finishing up this week! I'm so thrilled for all of you!
Here's a follow up to my post about the crazy boost position I was put in earlier this week. I saw the RO yesterday and she was THRILLED with it. Said it opened up the area so well that they can use a lower power. that's good. However, apparently I am now a minor celebrity in the clinic. My picture was shared with all the other ROs and staff because no one has ever had to be in this position before. She told me they were thinking of naming it after me! HAHAHAH! The dosimetrist (?) is so proud of herself for coming up with it and apparently is super proud of me for actually being able to get into the position and hold it and I didn't complain (I just laughed). I am a very large woman so I think they were surprised I was as agile as I am! I had a sub rad tech yesterday and I told him, "You should see what they're going to have me do for boosts." He said, "I heard about it!" So apparently it's making the rounds as well with all the techs! Seriously, all I can do is laugh about it. It's making for great conversation!
So, I hit single digits today: 9 more to go; four regular and five boosts! WOOO HOOO! Happy weekend everyone!
Jenn
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ANd what the heck is a "BOOST"?
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