Any February 2012 radiation gals out there?

SuperFoob

Chicago1958: glad I could help. The Coobies is very comfy. I wear mine around the house. Put it on as soon as I get home!



AnnAlive: like El-jaye, my Bolus is for me only. It has my name on it and they keep it with my rock hard pillow form thingie. They don't heat it up. My foob is still numb in most parts but I can tell it is cool on the areas around the foob.



El-jaye: my last treatment is March 20! are you noticing any redness or anything yet? My sixth session was today...I haven't noticed anything yet. Fingers crossed!



I bought some Calendula cream to use along with the Aloe Vera Gelly. Both are ok to use per my RO. The Calendula stuff smells good. I got it at Whole Foods. It is made by Boiron.



I got good news today that I will be able to get my symmetry surgery as soon as my radiation ends! I thought I was going to have to wait longer but my PS says I heal up really well and thinks I will be ready. YEAH! That means I will go back to work with my new chest...one foob and one reduced/lifted boob! Wootwoot!



My birthday was yesterday and my husband gave me Wonder Woman flip flops. The straps are red sparkly. So cool.

capinva

Hi ladies,



I just got home from my simulation and will be started rads on Tuesday. I elected not to have reconstructive surgery and have been wearing a genie bra. The nurse told me I will not want anything on my skin. So does that mean no bra? Did anyone order a camo for radiation? I saw one on TLC website that was made of lighter material for radiation. Thinking about ordering one but it is expensive. Just wondering if anyone else is wearing one or just normal clothing. Good luck to everyone.

dancetrancer

Hi ladies, I started rads on Tuesday, so today had my 3rd of 28 treatments scheduled.  

I had a BMX, but close margins, so unfortunately STILL ended up needing radiation.  I fought it hard and had multiple opinions, but radiation it is for me.

I am getting left-sided radiation.  They are using respiratory-gated technique with me to help minimize any rads to the heart, so I have to watch a computer screen and take a deep breath to where the screen lights up green - then keep it green by holding my breath for a short while.  I sucked at it at first, but did pretty well today!

So far, my only complaint is tightness in my R shoulder with the position, which results in some discomfort as well as my fingers going numb.  It goes away almost immediately when I get out of the position, so no big deal.

I'm using Udderly Smooth cream 2 to 4 times a day, as much as I can remember to do it.  I'm starting now preventatively with moisturizing the skin.  Hope it helps. 

I'm also really trying to do great with my diet - eating lots of fruits/veggies for antioxidant help and flax seed as well.  I made up my own post-radiation grape smoothie - frozen red grapes, organic grape juice, nonfat greek yogurt, flax seed, and a touch of honey.  YUMMY and it is my way of treating myself.  Flax seed is thought to help minimize any damage to the lungs from rads...only animal studies...but what the heck.  I'm not taking any supplements so I'm not going overboard with alternative stuff  - doc said it was fine to do whatever I wanted as long as I was doing the whole foods approach.

bak94

Geegster-Happy belated Birthday!!!! The flip flops sound adorable!

Capinva-I was wondering the same thing. I had bmx with no reconstruction and have just healed enough to go get breast forms. I haven't been wearing anything, just going out flat with poofy vests and stuff since it has been cold outside. I need to fins something to give me a little shape as we head into nicer weather.

Still not sure when I start rads, had the simulation, now waiting for the call for starting up. Maybe I will call tomorrow....

dancetrancer

So last night I noticed (and DH confirmed) that my radiated side looked slightly sunburnt already...after only THREE treatments?  Is that even possible?  I thought you didn't start burning until a few weeks in?  

This morning it was back to normal color, but still...it scares me that I already am showing some skin changes.  Anyone else notice skin changes yet?  At what # tx?  

beegee

Hi Everyone,  I have spent the last hour reading every post in this thread and I am inspired by all of your stories and your courage in this fight.  I was diagnosed in august 2011.  T/C x4 from Sept 26 till Dec 5.  Lumpectomy plus sentinel lymph biopsy Jan 5, and now have just completed my first week of radiation.  Even though the chemo literally flattened me twice (I ended up in the hospital after the first two treatments with neutropenia), the radiation is scaring me the most.  I should have come to this site a long time ago, because the amount of information is incredible.  And the support and commiseration is so helpful.  I thought I was the only one who had funky finger/toe nails, numb toes, and white fuzz on my head, etc.  

When I went to the mapping for the radiation, things went pretty smoothly.  I also have claustrophobia, but didn't mind the CT scan at all.  It was a breeze compared to the breast MRI that I had before the surgery.  Then the next appointment was the planning and xrays.  That also went ok.  First treatment was set for Monday.  On Monday, they couldn't get me lined up the way they wanted, and I ended up laying on that table for 45 minutes, being looked at by several different people and doctors.  I thought my arms were going to fall off!  After all that, I didn't get the treatment and they told me to come back Tuesday to re-plan.  So Tuesday, another 30 minutes on the table, more xrays, they finally did the first treatment.  I had one Wed, Thur, and today, Friday, so 4 down, and 30 to go.  It's starting to get routine.  I will be seeing the nurse and RO once a week, xray once a week, blood work weeks 2 and 5.

 The thing that freaks me out about radiation is that everything is invisible.  Even though they are directing mega-whatever's of xray stuff at you, you cant see it or feel it.  But I fear damage to my lung and even my neck, throat, face.  I have been reassured that it is very targeted, and angled so that there is minimal lung exposure, but I still fear it. Plus, I would feel so much better if they said no lung exposure.  My RO also said that any potential damage to lung tissue would repair itself.  It's just the cancer cells that can't repair themselves. When you get xrays at the dentist, you get protection (lead apron).  The therapists leave the room and close this two-foot thick door, and there you lay with no protection.  I guess I just have to have faith that I have made the right decision in my treatment, and that the benefits of radiation far outweigh the risks.  

No side effects so far.  The daily trip is greuling.  It's an hour away from where I live.  I go early in the morning, then work a full day after that.  I hope that the fatigue doesn't stop me from working.  I also dance, a couple nights a week, and hope that I won't be too tired to do that.  I've been told to go bra-less as much as I can, and not too use any creams or lotions.  If I get sunburned, the RO will prescribe something.

This whole experience has been quite a ride.  I marvel at how lucky I am.  My response to the chemo was nearly complete.  The surgery went well and recovery from that was easy.  I expect the radiation to go well also.  I have lots of support (three sisters, many friends, understanding supervisors at work, dance friends). Lots of sick days at work, and great health insurance. Great doctors, and nurses and therapists who are so nice, and treat me like I'm the only patient they have.  And now this board.  I look forward to getting to know you all and sharing our experiences. 

Judy2013

Well, 10 down and 20 tx to go and so far, no problems.  My skin is a little pink when I come home but after putting on cream twice in the evening, it seems to be back to normal color in the morning.  I have no idea what a bolis is.  I also have the x-rays once each week which they said was for the doc to check on the progress.

 Chicago1958:  I am feeling the same relunctance you are towards the aromatase inhibitors that the med. onc. is recommending--Femara.  I told him I wanted to wait until all my rads were finished before deciding on the next step.  The drugs scare me way more than the radiation and I don't know if I will agree to taking them.

bak94

beegee-yhat sounds horrible having to lay there that long! With my first set up I was miserable, hands falling asleep, pain and just uncomfortable.I go for the next set up next Tues and start Wednes.

Dance-I haven't started yet, so I can't answer, but I am curious also. Have you found out anything from your doc?

sherrybaby

Dance, I had some tenderness from the very beginning of treatment (like your skin feels when you have a very slight sunburn), but no redness to my skin until yesterday. That was tx #7. I am wondering if that is because they have started using the bolus pretty much the entire time instead of just half.

As for the AI's, I am currently on Arimidex. I already had hot flashes and at first it made them much worse. That SE has settled down during the day, but my night sweats are absolutely horrible. I often wake up drenched and burning up, which is NOT fun.

Hope everyone enjoys the rest of their weekend and the break from treatment.

Sherry

I hope

Druanne

I haven't experienced any skin changes yet.......have had 4 tx so far.........I am trying to use an unscented lotion 4 times per day and have purchased a natural deoderant by Arm & Hammer for under my left arm  I find it so strange lying there while this machine revolves around me "zapping" me with radiation.......the people are so wonderful there.........they always give me a warmed blanket.......there are cookies and coffee and puzzles and games and books (if you are delayed for any reason)........Most times I am just in & out with only enough time to grab a cookie on my way IN AND way OUT! I too go right to work afterwards........am self employed so is not too bad......the drive to work everyday is an hour.......been commuting that for 13 years.......going to rads every morning has added an extra half hour to that..........not too bad

Hope everyone is having a relaxing Saturday

Dru

bojo

15 down 15 to go.  Half way there.  My skin in very pink and my nipple is OMG very dark and almost purple. YUCK and very sensitive.  I get "ZINGS"  all the time and  they take my breath away on how much it hurts!  Thank god it's only a few seconds, because if they lasted longer i don't know if i could handle it.  This is the second time around for me (other breast) and i don't remember the ZINGS happening so soon.  oh well....  Have a good weekend ladies.

Jo

GirlPowerDebbie

BeeGee - I have had 12 treatments and have no change in my skin yet.  I have also heard that you really do not see change until wk 3-4.  Time will tell. 

Not sure I agree with "no moisturizers" - if you google or yahoo "skin treatment during radiation" you get every suggestion under the sun.  Interestingly enough, the skin care sheet my doc gave me said aloe vera gel only, but I read in one of my searches that aloe was disproven as a moisturizer, LOL!  I guess it depends who you ask.

After reading different threads for a couple of hours, I chose to apply 2x a day the Mary Kay Replenishing Serum+C that I use on my face (boosts collagen production), followed by Jeans Cream (google that and read the testimonials; I like the texture, it is not greasy).  I told my doc what I was using and he was very positive about it.  I think the whole point is to take really good care of your skin.  I would avoid any fragrance.  They suggested Tom's of Maine deodorant which is fragrance free. 

I am really lucky, the hospital where I get my rads tx is only 10 minutes from my house, and I was able to get a 4:00 appt.  So I work until 3:15, drive to the hospital, get my treatment and I am out of there by 4:10 & then I go home.  I still get tired but I am not sure if that is leftovers from chemo or if is the rads.  I feel so much better than when I was doing chemo, I am grateful for any shred of energy I get!

Have a good weekend, girls - keep up the positive attitudes!

Debbie

dancetrancer

Hi all,

I talked to the techs and they said most people do not see skin changes until about week 3, as I had thought.  I asked them why, then, my skin was red the night before, but normal the next day.  They acknowledged that yes, you can start seeing skin changes like redness prior to the 3 week mark, but they typically are temporary, and resolve by the next treatment like mine did.  At about the 3 week mark is when the redness starts to not go away in between treatments.  Oh joy.

Welcome beegee - I can relate to not liking this feeling of being in the room fully unprotected while voluntarily laying there for zapping.  I have always had a significant fear of the radiation and long term effects, but after lots of research and opinions I determined it is what must be done - benefits of cancer reduction should outweigh the risks of the treatment.   I keep telling myself, all I gotta do is keep showing up, not be brave...per many of the smart women on this board! 

el-jaye

Hope everyone is enjoying the weekend!  I am 4 down 26 to go!  I am very fortunate, the Cancer Centre is on my way to work.  I have the 8 am treatment, then off to Starbucks for a coffee and  into the office. 

Had to give up my pretty underwire bra for a lousy non supportive sports style bra yesterday.  To compensate, I went shopping today with my hubby and let him buy me a stack of new tops!  You know, when the going gets tough the tough go shopping!

I am seriously counting down the days until all my treatment is finished!  March 19th here I come!!!

Patriotic

Hi ladies. I started rads last week. I had UMX in Oct but then got localized breast MRSA in expander. Had to remove expander, replace with implant and take mega-antibiotics. I am starting rads a bit later than most. I am ready to get this done.



I've had three treatments and every other will be with the bolis/mold. I notice some minor skin reddening. I have been wearing a flimsy cotton sports bra . But, I am large-breasted so, I started to notice a heat rash under my breast. With the weekend break, there is improvement but I think I am going to have to wear a more supportive bra, minus underwire. Anyone else having this problem?



I am using Lotionsoft. Aloe Vera (pure) isn't a moisturizer; it's more of a burn treatment. I used to grow it. I plan to use it but in addition to the creams I'm provided. If anyone finds something better, please recommend.



Thanks for this thread. I am sure it will be a lifesaver as we move further along.

misha99

Hi patriotic we are both doing rads post implant we can compare notes. My ro office tells u which lotions to use and they sell them at cost. First we use natures best vit e cream then aquifer then they prescribe if u need more. I had a delay while they were deciding if i should go to a different center . False alarm so i get to stay local. Had dry run fri and will have first zap on monday.

dancetrancer

Patriotic, I'm way behind, too - started rads last week, about 4.5 months post BMX (complicated story, see bio on my page).  I hear you on the complications...uggghhhh....WAY ready for it all to be over!!! 

I am using Udderly Smooth - recommended by my rads facility, plus I saw it on several of the olds rads threads as being very effective.  We'll see! 

I'm a very small reconstruction - only about an A cup - so no skin fold/heat rash issues, but I have heard of this happening to other ladies.  I think I remember some saying they put corn starch in the area - but I'd check with your rads facility to see if that is ok.  

chatsworthgirl

I have been a little worried lately about the radiation issue.  I met with the rad onc two weeks ago.  Supposed to hear whether or not the group meeting of oncs re all cases plus mine would tell me whether or not I needed radiation.  My age - 70 - plus stage is in the gray zone. I had total mastectomy so no rads to breast area, just to nodes under arm if I have to do it.

My concern is that I finished chemo on Dec 9 and thought you had to start radiation not long afterwards.  However I see from some posts that it can be months later that rads are started???

If I don't have to do rads then I will start Armidex - not crazy about that either. Wondering if there is a danger in starting rads or Armidex so long after chemo.

Also have a question:  some have mentioned having a complete response to chemo.  Did you have some test that shows you what your response was?  My onc has not said a word about what my response to chemo is or was.

Kathy

dancetrancer

Kathy, they like to do rads, chemo, etc. as soon as possible, of course, but you can do it later.  I was told up to 4 months post surgery (if not getting chemo in between - I think that buys you more time) was my "deadline"...but obviously, by the time I got started it was 4.5 months, and they still wanted to go forward.  So apparently, they feel it still offers me some benefit.  I'm sure every RO has a slightly different opinion.  

Chicago1958

It is so heartening to read all the posts and know that there are others doing this. I'm sending good thoughts to ALL of you.

I'm on the same schedule as Dancetrancer and Patriotic (no bolis) but I haven't seen any side effects... yet. I've been rubbing on the Aquaphor samples the technician gave me and (strange as it may sound) organic olive oil. Unlike so many of you, I didn't have to have chemo, so I feel like I'm getting off easy.

I like and trust my breast surgeon, have known him for years, and he said right off if you want a lumpectomy there has to be radiation too. I got the idea that he doesn't want to guarantee that he got every cell, saying that we think of a tumor as a sphere, but it's actually a cloud. And I think of radiation as a well-tested procedure--they've been doing it for years.

The aromatase inhibitors, on the other hand, are relatively untested, but I'm even getting over my medication freakout. I think it just took a little while to get used to the idea. And as people say, you don't sign on for life... I figure I'll take the Femara for a couple of years and maybe by then, there will be another treatment or at least, more data. Judy, let me know how your thinking goes--you sound like a medication minimalist and I am too.

Again, good thoughts to everyone, especially to those of you who have complications, a long commute, a lot of previous treatment, arms over your head for 45 minutes... !!!! Best wishes.

rabbit

hi everyone, I had my simulation on Friday and start Monday, 9am...for 28 days. My RO gave me a script of biafine cream...anyone else using this? I am so overwhelmed, going back to work tomorrow, I have worked from home, owning my own company for 11 years doing internet adv, and this will be the first time in 11 years I have to answer to anyone! My income dropped so much that I had to pick up something to make up for the income. 

I will post over the next few days and let everyone know how I am doing with my first few rads.

Hugs to everyone! 

belleeast

hi all,

4 treatments down,30 to go. i asked my ro about cream for my skin, he said not to use anything til i start having skin problems. usually around 2nd or 3rd wk, he said they will give me something. i'm not too comfortable with that but afraid to use anything for fear of causing skin problems.

my 4th treatment a different therapist/tech did my treatment,regular one will be back mon. i swear the new one had the table up higher and the machine when it went to the right side was a lot lower. definately going to pay close attention tomorrow and say something to the tech and the ro on tues about my concerns. i hope i'm wrong but kinda freaks me out.

SuperFoob

Howdy!

I have had 8tx so far. My foob looks a bit tan but it doesn't itch or anything. I have an olive skin tone so I hope that helps me out. I don't burn easily, just tan.

I am using Lily of the Valley Aloe Vera Gelly and Boiron Calendula Cream with the blessing of my RO. I use it when I get home from treatment and then at night before I go to bed.

I also have an implant, not TE, and so far so good. I am getting PT for some axillary cording as they say that Rads can make it even tighter. I also had a seroma that has since PT gone away. So I do arm exercises as well as Manual Lymph Massage twice a day.

I did neoadjuvant chemo from May to October 2011, Oorphorectomy in Nov, Uni NSM in December and now Rads. I also take Letrozole (ie: Femara). I've been on it for a bit over a month. I haven't had any side effects so far as I can tell. I already get Hot Flashes, since Chemo brought them on. I only get one a day or so. I can go days without any and then a couple in one day. Definitely no schedule to them.

That's about it for me.

I hope everyone has a great week with no icky side effects!

misha99

Had my first tx this morning.  It is hard to relax--they should serve mimosas instead of coffee in the waiting room.  They had to re-do my xrays from the dry run so i hope all is well.  I have been noticing some issues in my lower arm --cording--but i think it is becasue of my activity lately (swimming and elliptical) so i am trying to stretch it out.  I see the PT next week so we can discuss.

Sharie1

I was partly right. They said the computer was messing up.  I finish treatments on Monday, I think.  Then I get my affairs in order.  Am giving up. Guess this is goodbye.

itsjustme10

I just finished #25 of 25 today!!! Yay!!!! 

Other than some redness and some flaking under my arm, it wasn't so bad.  But they did say to be sure to use the Aquaphor for another month, and to still be careful because it takes about 2 weeks to get out of my body.  So, hopefully it won't get any worse, and I survived radiation.  Whew...

mlm445

Hi Gals, I would like to join the group too! I was diagnosed in August - had 4 A/C and 4 Taxol, surgery/lumpectomy  and had my radiation tatoo's last week. I go today for an X-ray and don't yet have a regular time scheduled. I'm hoping to go for 21 treatments but because of the size of tumor may have to do 33. Nodes were negative. After reading the posts I wonder now if they will spring a treatment on me today. I have been todl to use Calendula Cream and tom's natural deo. Honored to be amoung such a strong group of women!    

mlm445

Congrats itsjustme10

chatsworthgirl

I am completely conflicted about doing radiation.  My onc had said from the beginning that he didn't think it would be necessary because of my age and stage.  Then I had to see the radiation onc and he had a meeting with other oncs or whatever and I found out today from my onc that some of them decided I should do it.  I asked him again if he still didn't think I needed to and he said yes but that I should talk to the radiation onc and that ultimately it was my decision.

I know that the radiation onc will say yes do it.  But, of course that is what he does.  Not that I am being paranoid but I think that doctors tend to recommend doing the thing that they do and let's face it, none of them want to run the risk of saying don't do because if later you get a recurrence you would blame them for it.

I have no breasts so the radiation would be to my underarm only since they only took the sentinel lymph node and it would be to radiate the other nodes. The M.D. Anderson stats are that I run approximatley a 5 to 7% risk of local recurrence in ten years without radiation.

The surgeon didn't do axillary disection because with my tumor size 97% of the time it is only in the sentinel.  And that way I didn't run the risk of lymphedema.

Well now if I do radiation to the axillary I run the risk of lymphedema.  So what the hell was the benefit of sentinel node disection only if I wind up in exactly the same place?  It's practically a joke.

My strongest impulse is to NOT do radiation.  I know nobody can tell me what choice to make. This is the only place I can come to vent my spleen on this topic.

Judy  The aromatase inhibitors scare me too.  I am supposed to take Armidex.  Again there is no way to know what your response will be.  Maybe some side effects, maybe not, maybe a lot - who knows.  I wish there was a way out of all of it.

Kathy

el-jaye

Had my 5th treatment today, only 25 more to go!.  No redness, or soreness from it all.  I dont feel the treatment at all.  I would be very concerned Sharie1, if i was feeling the way you are..  I would be calling my RO, MO, primary DR.  Anyone who would listen!

I have been very fortunate.  My BS, MO and RO have been very patient with me while I asked my 1000's of questions.  I was loaded down with all the stats and given volumes of information.  Which is a good thing for me!  I feel that my descions have all been thoughtfully made.  I have never felt pressured by any of the medical professionals to have any kind of treatment.  During my Chemo, my MO asked me every visit if I still wanted to proceed.  

I hate the fact that I have had to have treatment for cancer, but I feel very blessed to have been treated at the Cancer Clinic here. I only wish that all of you could be here with me getting the same service. 

 Praying that all of you have a good week and that the side effects are minimal!!  for all of us!