Winter RADS 2012 Club...Please come join the fun!

aliyahgirl

Andrea and Terri - Congrats!!!  I'm so happy for you and can't wait to follow in the footsteps of the "masters"...  12 more to go.  Can't wait to say good-bye and thanks to the crew in RO.  Trying to be patient, trying, trying...

Welcome Zahara.  Hope things go well for you even though it seems like a bumpy start.  Here's to hoping all the good feelings from all your new "sisters" here will ease all of your SEs.  Not to mention great information and tips that for some reason, oncs, ros, and nurses seem to forget to tell us...

Sonson, you made my day telling me that you have an appointment for the possible LE.  I was so worried that your concerns wouldln't be taken seriously enought.  No one knows us like us, right?  I hope the rads move right along smoothly for you and everyone else, and that the swelling will be under control quickly with a good PT.

FGM, I'm pretty big on top too and so far, no problems thank goodness (18/30).  Am also still wearing an underwire bra and so far so good.  I use the soft bra liners (harrietcarter.com) and they're doing their job of preventing skin on skin contact underneath, and also absorbing the moisture that remains from the creams so there's no skin breakdown. 

Life - I have you in my thoughts all the time and hope so hard that you have some resolution to the situation tomorrow.  Time this past week must have moved so slowly for you while you were waiting but hopefully after tomorrow, the docs will have a good treatment plan for you and the time will begin to move faster towards a definite goal.  Please let us know how it goes.

Take care, everybody - we rad girls must be the creamiest, softest skin creatures on this planet!

Loving

Lifeonitsside: good luck tomorrow. I always found it helpful to stay in the present and deep breaths.



To those done: Congratulations!! It has to be such a great feeling to be done!!



To those that we tired: maybe you can switch your time to the last appointment of the day so you can just go home and rest. I'm fine during the day but exhausted about 45 minutes after my treatment. My appt time is 3:50. Also, I'm finding that exercising is helping me. It is the last thing I want to do but a short walk is helping.



I'm hoping that my Christmas decorations actually get put up and boxes back in storage. I have minimized the decorating this year but even putting out a little has been a challenge. A neighbor brought dinner tonight and it was really nice! Does anyone else find asking for help hard??

heidismom

Welcome Zahara and congrats to Terri and Andrea! We started at same time, I have One more whole breast rad tomorrow then 7 boosts. Toasted but RO said today looking good. So Cheers to finishing and best to those starting. Keep lotion and air on the area.

Loving

Anyone else watching Parenthood? I'm questioning why I'm watching.

cider8

Congrats Andrea and Terri! So glad you are finished!

fgm

Loving-Yes, I just got done watching Parenthood too. My cousin was almost in the same situation. This was several years ago and is fine now but she was undergoing chemo.  She had a fever and kept it to herself because of the holidays.  She ended up in the hospital and the doctor told her to never do that again.  So, when I was dx she called me, told me her story, and I never forgot it.  When I got a fever during chemo, I called the doc right away.  So it does happen.  Anyway, Parenthood had a happy ending but I was crying during most of it. 

cypher

Greentea is antioxidant and I believe you shouldn’t have it while undergoing radiation OR chemo.  But then I saw this - http://foodforbreastcancer.com/foods/green-tea  This stuff is all so confusing.

Sonson, yes it is kind of like Alien.  The whole thing feels sort of surreal to me.

Terri, Andrea – congratulations on being done!  I’m … oh 6 weeks behind you, grumble.

Sue, your RO sounds annoying.

momtopiglet

Terri and Andrea- congrats!

Loving- yes, I'm not good at asking for help.  We did have several offers from our church congregation when I had surgery, so I did say yes to those, since I knew we would need it.  But I don't think I would actually feel comfortable asking.  

Hey everyone- I asked this question over on the Oct. surgery forum, but how is everyone's underam area doing?  Mine is STILL numb from the SNB, and it's making me crazy.  I also still have some of that residual burnning sensation behind my underarm, near my shoulder.  I don't much like that, either.  I really hope this is not my new normal, because it kind of gives me the creeps. 

My BS did say that some healing from surgery and SNB would be delayed due to the radiation....so maybe it will get better after radiation? Has anyone else heard this?  

I hope I'm not the only one here that still can't feel the underarm area.....

terrikoala

Thanks for all the congrats about my completing my Canadian protocol of 3 weeks. Things look so good I was spared the second simulation and the tumor focused boosts. Good thing because I have a terrible case of radiation burn on my chest and if I had to go on much longer I don't know what would happen. I have used all the right things on my breast and chest but  everytime the 'beam' did its thing the burn got worse. Started a week ago as a small patch and it now covers that entire side of my chest. Boob looks good though. They gave me the nicest diploma and even the RO's sweet dog Cloe's foot print is on it (using a stamp of course).They are the nicest molst caring people but I hope I only see them again in a store,etc. I have to go see the RO in a month for follow up and then  mammograms  more than once a year will start. together.  We all hold our breath under 'normal' conditions while waiting to hear the Mammo was good BUT now that we have had BC I can ony imagine the fear factor.

My prayers and good vibes are with all of you who have just started/still in this Rads journey and I pray NONE of us have to go thru it again. I know many of you have had this journey and chemo, etc more than once and my love is with you all.

Terri

sonson

Andrea and Terri-Congrats on finishing up!  That's wonderful news!  It seems so far away for me at only number 2 today, but hopefully it will fly by!

Momtopiglet-My underarm area is still numb, but no burning sensation.  My surgery was back in August.  My BS said it could be years before you get feeling back in that area or it could never return.  The burning sensation I would think goes away.  I'm not sure I ever had that feeling...it's been so long now and chemo has my brain all fuzzy that I can't remember now.  After going through the horrors of chemo the surgery part of all of this seems like nothing now.

Welcome Zahara...you've come to a great place to ask questions or vent or just make friends.  This is a great bunch of women on here.

Doxie...living in Athens has it's advantages.  I've gone to Andree's and gotten some of the gel that you mentioned.  I couldn't stay at her shop for very long because I have a very sensitive nose.  Smells give me a headache, but I'm glad that her gel doesn't have a smell to it.  I've been using it every day since starting rads.  I'm not quite sure where to put it yet since I haven't really starting burning so I hope I'm getting all the right places.  

I have an appointment today with a LE specialist!

Lifeonitsside-please let us know how everything goes.  We are all concerned and hoping for the best. 

allurbaddayswillend

Zahara, I'm not sure what you mean by "oil doesn't make any sense" - I'm using an oil on my breast at night (sea buckthorn) and my calendula cream (for itchy spots) got approved by my RO yesterday and it has lanolin in it so it's very oily. I have a lotion that the RO approved also, it's California Baby Super Sensitive™ Everyday Lotion, it's water based and I've been using on my face for months. It's so great to be able to get natural products that are also easy on those of us with sensitive skin, eczema, etc... I know a lot of people love coconut oil in general - I can't use it, I find it drying. The SEVEN cream that Sue2690 is using sounds great to me too. I think of it this way, the radiation is knocking out all kind of cells in the breast region, including, probably, the oil glands in the skin so us putting some safe oil on there to help protect the skin seems like help, not harm. You could ask your RO about it.

http://www.californiababy.com/super-sensitive-everyday-lotion-6-5-oz.html

My RO also reminded me not to use any deodorant with aluminum in it. The office gave me a picture of a Tom's of Maine deodorant that they suggest. I'm using Lafe's deodorant, but not until after my rads are done each day, which is "Aluminum, Gluten, Paraben, & Propylene Glycol Free..." http://www.vitacost.com/lafes-natural-and-organic-deodorant-stick-tea-tree

Lifeonitsside

Momtopiglet - I had my surgery way back in May and my numbness is actually more in the back of my arm than my underarm. But I have noticed as time has gone by, I am getting a bit more feeling back. I don't expect it to ever be not numb but the tingling and the weirdness has slowly gone away. I'm getting used to the lack of feeling. The hardest thing is that it has affected my fine motor skills a bit and I'm an artist so I really notice it. It's nothing big but when I try to draw small details, it's difficult to control. And sometimes when I write, I find it difficult to write for long or I have trouble controlling the pen after a while. Like I said, not a big deal and I'm learning how to work around it. All the concessions we learn to make after a while....

elimar86861

Congrats to those already finished!  You may be quite sore and burned, but you'll be amazed that the healing is quick.

I had the Tom's deodorant, but I thought it smelled a bit like b.o. even before I put it on.  Then, I thought it gave me an odor.  I'm not a fan of it.

As the friendly debate on lotions and cremes heats up, I'll just say any creme that has natural ingredients and the ability to moisturize you will probably do the trick.  Yes, your own oil glands have been decomissioned by rads.  If you burn, it won't be because you chose the wrong creme.  Don't forget, the rads is penetrating deeply through all the skin layers, the ones you cannot reach with lotions.  About all you can do for that is hydrate to the max. 

cvmarilyn

Hi - I've only had 2 treatments - and already my throat area is pink and itchy  I have (had) red hair so burn really, really easily - they say it's not related to the rads - but what else could it be???? Any ideas on what I should use? Also - anyone had leg pain after finishing chemo? My doc said it's from the steroids - huh????

Take good care- and ask for help - if not now when?

Marilyn

elimar86861

About 1/3 women get a more severe skin-burn from rads.  Hair color has nothing to do with it.  Skin shade has nothing to do with it.  It probably doesn't matter which brand of lotion you are using either, so pick your favorite one with the most natural ingredients.

p.s. cvmarilyn, Make sure to go to rads with clean skin and nothing on it.  Let your doc know and they have some prescription cremes that might help.

cowpower

Cvmarilyn, I am 12 weeks PFC (wow, time flies when you arent on chemo!). I had some lower leg pain and pain in the tendons of my ankles. My MO said due to taxol or tamoxifen, not sure which. I had been taking 600 mg ibuprofen daily but finally dont need it anymore, at least not daily.



Sonson, cant wait to hear what your LE Specialist has to say. I have improved a lot in thetwo weeks I have been going.



Hi to Zahara, and welcome aboard

cider8

My ALND was done 1 1/2 years ago. I am still quite numb on the back of my arm and totally numb under my arm and towards my back. I was bothered by, and unprepared for, the numbness. Eventually I got used to it and it really doesn't bother me anymore. I still get some tingling and I think phantom itching.



My RO's only dietary restrictions are no high doses of vitamin E or C. Her only skincare guidelines are mild soap and moisturizer, with no extra treatment ingredients and no fragrance or color. She told me yesterday she had a patient with skin problems. Turns out the patient was using Dove bar, but was using an exfoliating variety!



My breast is getting splotchy pink and apparently starting to swell. I've been feeling more tight on that side: ribs, back, shoulder. Still doing my PT stretches but it only helps so much. I find that I do get sleepy in the afternoon but then I also can't get to sleep at night. Part of that is self discipline! Or lack there of.



This afternoon I'm taking my 8 yo daughter to get her ears pierced as a bday gift. She turns 9 in less than 2 weeks. When she was 5 she saw her big sister get her ears pierced and vowed never to get her own ears pierced. So it's only taken her about 4 years to change her mind! Going to my derm's office for it.

Yawls

Hi, I was reading through the posts getting ready to join. I have my simulation meeting tomorrow so should be starting soon. Anyway, I am also a big girl and earlier in the posting there was an underwire conversation that caught my eyeI ...Lane Bryant has a sister company that sells Cacique brand bras. I had one before surgery and wasn't all that crazy about it, but now it's perfect. Very sturdy and supportive, but soft. It's cotton and trimmed in satin so it's not horrid looking while it holds up my one D and one BB lopsided boobaloobas! You can find them online if you dont have a Lane Bryant store around you.

ZaharaTheWarrior

Allur...

Thanks for responding- I wasn't clear...I meant that I imagine putting oil (which conducts heat) on an area that is already heated would not be soothing. And that if you have excessive oil on the skin then the skin would be more irritated from the radiation. I combed through some google searches and found conflicting information. My radiation pamphlet says doctors don't agree and to just do what they tell you to do.

😕

I will ask the nurse specifically 2moro when I see her and let you know.



Sending happy vibes...Zah

momtopiglet

Ok, so my doctor's recommendation today was Red Bull for the fatigue.  

Really, dude?  An extra twelve years of school for THAT SUGGESTION??  Not that I'm not happy to self-medicate or anything, but seriously.

Lifeonitsside

So went for rads today and they re-mapped to include my clavicle.



Talked to the doc. He's not sure exactly what is causing the swelling but says it can be a sign of very early spread of cancer, microscopic cells, which is why he wants to hit it right now prophylactically. He says it's of medium concern right now - don't lose sleep over it but be aware of any changes, etc. He wants to hit it with an extra 5 treatments since I've had 5 already but it might not extend my end date as they build in extra "boost" sessions at the end of the official treatment. He thinks hitting it now will eliminate any concern of it spreading.



So, relieved, to a point. Again, glad we caught it early, whatever it is.



I'll still take good thought and vibes.

dventi

2 more zaps to go!! No major issue on boob, has anyone developed a rash on other parts of the body while doing RADs...This sounds strange.. but I developed a red rash on lower legs on day 12 of 15 tx... RO says doesnt have to do with tx... Chemo finished Oct 10. Taking Femara but have been for 1 month already..

Could be unrelated... just odd.

Thanks

Outdamnedspot

Getting pretty pink and a little soreness...only 10 more to go.  Using the Glaxol Base 4-5 times a day.

Feeling really grumpy about treatment today.  I think I am just about done with the students.  I know they have to learn, but maybe a day or two on someone else.

Getting me in to position was a huge task today...around 15 minutes and I was so much more uncomfortable than usual.  I questioned it several times and I think I detected a little chill on their part.  Oh well, my body, my treatment, my choice.

Andrea623

Thank you for all the congratulations on finishing rads! Congrats Terri to you too! Yesterday after my last treatment, I got to ring the celebration bell, and the staff all cheered. I got a "diploma" for finishing too. As I was leaving the cancer center, I started bawling. It was like having a huge emotional release. I am so glad to be done!



It was wonderful not having to go for a treatment today. I am very red, and it is painful under my breast and around my SNB incision. I'm a dark, almost purpley red, and feel under the weather. I think (and hope) it's from fatigue and discomfort from the rads. I don't think my skin would have held up if I had to have more treatments. I honestly didn't think my skin would look like this, since I rarely burn when out in the sun, but as others have said, that doesn't seem to be a factor in how our skin will react to rads. I was told that it will most likely get worse before it gets better. I've been doing my stretches, but today I am very tight, and the skin feels like it'll split. I'm keeping up with the Miaderm, and I hope it helps.



Has anyone tried emu oil? I've heard it's good for burns and radiated skin.



Lifeonitsside, I'm glad they caught whatever it is early, and are treating it. I'll keep on sending good vibes your way!



Momtopiglet, Red Bull? You've got to be kidding! That stuff isn't even very good for you! About the burning, I don't have it around my incision, but do have burning and pain under and on the lower part of my breast. Or what once was my breast, since I had a mx. My doctor said it was nerve pain, and I take gabapentin for it. It doesn't take it away, but at least makes it more bearable for me.



Outdamnedspot, I was pretty grumpy about treatments once I passed the halfway mark. But you're in the home stretch! It'll all be behind you soon!



Welcome to all the new ladies!



I hope everyone has a SE free week!

lfallert

I would like to join this thread.  My family is very supportive but tell me it is a good cancer and will be gone soon.  I know it is only the DCIS but the lumpectomy and radiation still terrifies me.  I have a large hematoma from the lumpectomy  They tried to drain it and now I have 2 large hematomas that hurt  I have been using heat on them but tomorrow is my first day of radiation and not so sure I will be using the heating pad very often.  Still looking for the cotton bras. The rad techs told me to wait till I have skin irritation before treating it but I would like to be more proactive  I appreciate all the ideas and support I have received so far from these boards

cypher

Lifeonitsside, glad they're on top of it.  Ugh this is a scary disease.

I am having pain in the hip area, like the crease in your jeans if you're sitting down -- right there.  Anyone else have that?  And I also have elevated phosphorus levels which is freaking me out.  Could be kidney problems, but my kidneys apparently are funcitoning well.  Could be bone mets.... 

On a cheerier note, I seem to feel really gloomy every day when I leave the rads place.  Anyone else have this?  I don't know how to account for it, if it's psychological or physiological or what.   

Lifeonitsside

Cypher - I find rads weirdly more emotionally difficult because it really feels like "treatment". With chemo, I sat in a comfy chair with my iPad and watched Netflix, had friends hang out with me, the nurses would bring me food if I was hungry. There was a very nurturing, caring feeling to chemo, strangely enough. But rads is so cold and lonely, being on the table, half-naked, all by yourself, weird lighting and all that. I found the first couple of treatments very unsettling. But getting used to it now. Good thing it's quick.

cypher

Lifeonittsside, maybe it's that.  I definitely had support around me with chemo and then I guess when I was feeling lousy from it I was home with my dogs and my stuff.  Also I pretty much expected to feel lousy during chemo.... 

terrikoala

Andrea,

That is so cool that you got to ring a celebration bell and I am happy that you are D O N E. It was odd not having to go yesterday wasn't it? We get into a routine and schedule our lives around it. I thought I would cry when it was all over but I did feel a calm come over me as I drove home. Then the prospect of dealing with the MO over the Tamoxifen loomed darkly. I see him again next week and last time I told him I did not want anything to do with a drug that is going to give me MORE hot flashes/sweats, gain weight, affect my aging and sometimes stiff joints. etc. I am not looking forward to debating it again with him. MY DCIS was stage zero, small,  large margins, no calcifications and I did the radiation and everything seems fine so why put myself through that.  At my age I have enough 'stuff' to deal with and if I have any more intense sweats I will have to live wrapped in towel.

As for emu oil......I am sure it would help as it helps almost anything but it is very pricey. There is a farm near me  and my husband knew the owner and gave him a sample bottle and I use it very sparingly.

Sorry your skin is so bad. Mine is bad enough and I only had 16 treatments. I keep slathering it will aloe lotion, aquaphor and cortisone cream to keep it moist so there are no splits. Nurse told me when I left that if it does not start to heal to my satisfaction in a week to come see her.

I hope you get better and if not...call the RO/nurse and go back and see what they can do to help;

Terri

allurbaddayswillend

cvmarilyn, I still have some leg pains. A couple days ago just when I was checking in at the rads clinic my right leg almost buckled out from under me with the shooting pain - luckily I had a countertop to catch myself on. But I don't have pain constantly or even in a regular way that I could anticipate. How you heal from it all will probably depend which chemo you had and how you body reacts to it. I had Taxol and it can cause some weird neuropathy stuff. I'm 3 weeks 2 days PFC.

I agree with elimar about lotion. I was just wondering about zahara's concern of coconut oil and probably should just have said, "if it works for you, stick to it..."  I don't feel like anyone's debating, just sharing what they've heard from their ROs, other survivors, etc and I love to hear all the input. The climate where I live is quite dry and cold this time of year (5°F, -15°C this morning) so he wants his patients to use a water-based lotion at least a couple times a day but I can imagine this sort of thing will vary in different climates/humidities too. It seems like his big message is simply "moisturize at least twice a day" - like elimar says, it probably doesn't matter what brand...

momtopiglet, the Red Bull suggestion is almost hilarious if it were a sketch on a tv show, but this is your frikkin' life here, duuuuude.

cypher, I was getting a hip pain like you describe during chemo. I'm only 3 weeks PFC. I haven't noticed is much over the last week unless I overdo my exercising a bit so for me seems to be somewhat associated with a muscle or tendon in there. I actually get ennervated by the rads clinic experience - I feel a little hyper for a while. I don't think I feel nervous or anxious about the treatment consciously except maybe it's just excitement that each day is that much closer to the finish.