Fall 2013 Rads

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  • Rainyday13
    Rainyday13 Member Posts: 29
    edited October 2013
    Hello everybody,

    I am finally going for the dry run tomorrow and rads will start on Thursday.I do understand the emotinal reaction to rads. I think that all the bravery and coping was in play during chemo. All the physical stress, not feeling well, losing your hair. There was the diagnosis, the shock, the biopsies, the waiting. But now, it isn't over, here comes another unknown. How will you feel? No wonder you feel weepy after that. I didn't have chemo, but I prepared myself and I was there with you mentally. Your life stood still and it can get really depressing. We'll make it through this, life will improve and be good again.
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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Jeannine, I have not tried to contact Genomics because I want my MO to appeal to my insurance co first. She is a preferred provider for bc/bs and if she feels I need this test to decide if my body should be put through chemo then insurance co should pay. If they don't then I will contact Genomics. Thanks for the info.

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  • OhhKay
    OhhKay Member Posts: 12
    edited October 2013


    Hello, I am new to this board. Very nice to see such a positive and supportive group of lovely people here and look forward to getting to know you.


    Rainyday13, looks like we will start the same day, tomorrow. I'm a little nervous but glad to get it started after a 5wk delay due to complications with recon surgery. For me this is the last major chunk of a long year of treatment and I'm ready to get it over with. Practicing deep breathing - for relaxation and for on the table :)


    Peace, K

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    OhhKay - Welcome. I hope to find out tomorrow that I can start. Just waiting for them to say no chemo first. I get the results of my oncotype DX tomorrow that will help me decide. Hope to be joining you and Rainyday.

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  • jbdayton
    jbdayton Member Posts: 700
    edited October 2013


    Welcome ohhkay, so glad you are almost finished. It has been a long year. Sorry you were delayed from surgery complications.


    Wish I was almost finished. I have to wait several months before I can do my DIEP reconstruction :).


    I feel quite comfortable with the treatment but I am not doing 3-D. Good luck.

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  • CarlaK
    CarlaK Member Posts: 158
    edited October 2013


    Congrats to all who have finished and good luck to all about to start!


    I reached the half-way point today. Starting to get red, itchy and a little sore. I'm tired in the afternoon but usually I can catch a second wind to make it through the evening, but at 9 pm I'm happy to go to bed :)


    Any grumpiness I had about rads flew out the window today--my tumor markers are down again, now into the normal range!! Bring on the second half, and let's keep kicking this cancer's butt!


    Carla

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  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Way to go CarlaK. Good job.


    A special thanks to MsPharoah - You are a truly enlightened person.

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  • notdefiningus
    notdefiningus Member Posts: 4
    edited October 2013


    Hi Fall Rads Group, My wife is scheduled to begin rads on 11/4 and we meet with RO on 10/28. I am wondering if anyone here has asked their RO about the new study out of the UK which concludes that shorter schedules and lower doses can be as effective at reducing risk of recurrence as the standard schedule and dosage? This study is reported in the News section of this website: http://www.breastcancer.org/research-news/20131014. The study applies to early stage breast cancer. The standard schedule in the US is 50 Grays of rads delivered over 25 sessions (not including boosts) and the low dosage schedule found in the UK to be just as effective is 40 Grays delivered over 15 sessions. Side effects are supposedly significantly reduced. We are going to ask our RO about this and I will repost back. I am sure many of us would love to see the risk of side effects reduced as well as cutting the schedule from 5 or 6 weeks down to 3 or 4! Let's all hope!

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  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited October 2013


    Great for you Carla! (As of today I am halfway through as well!)


    Notdefiningus, there are some here doing the excellerated version - I'm not, so I can't say anything about the effects, but it sure would be nice to be done quicker! Nice that you are being so involved with your wife's care!

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  • Kruise
    Kruise Member Posts: 330
    edited October 2013


    Hi beautiful radiant ladies :)


    Just a quick question, I've just had treatment #19/30 - and my chest is really starting to get very itchy and a bit red, raised and angry looking. They have prescribed hydrocortisone cream - but how does this help? Does it actually clear the rash symptoms up - or just stop itching? I'm reluctant to use it till I really have too - but was just wondering how it actually helps??


    Bluebird - feeling for you love - hope you can 'speak your truth' and get it all sorted to how it works for you!


    I broke down at end of my 6 months worth of chemo. I feel that was rock bottom time for me. Coping with rads emotionally a lot better.


    Love to all xx

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Carla, Woohoo! Good for you. Those results really make it easier to hop up on that table every day. I get my tumor markers at the next MO appt and I sure hope I have been kicking some cancer butt like you.


    Notdefiningus, when I went for my rad onc appt, I wanted to know if I could have rads prone and if I could have the abbreviated dosage. Most rad oncs have a personal preference, which is quite maddening and I sensed a lot of push back to his traditional tried and true method. But I was able to convince my doctor to do rads prone even though I was right-sided. When I pressed him about the lower dosage of rads/shorter treatment, he said he would consider it had I gone immediately from lumpectomy to radiation without the intervening chemotherapy....and that he was not comfortable with me having the shorter protocol. I don't expect my doctor's to embrace every new treatment/protocol, (and they definitely roll their eyes when they encounter a patient who has surfed the internet)... but I do expect them to give me a good reason why they are rejecting it. You are wonderful to be such an advocate for your wife. Let us know what you find out. Information is power!


    MsP

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Kruise, the hydrocortisone stops the itch but it won't do a thing for the rash. I used it and found it helped a lot. And if you scratch your rash, you could cause an infection and cause even more discomfort. Slather that ointment on and enjoy the itch relief!!!


    MsP

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  • Teachersbc123
    Teachersbc123 Member Posts: 34
    edited October 2013


    notdifiningus,


    I asked my RO about shorter period of rads but he didn't think the research had been around long enough. I'm only 46 and he quoted the testing results as only being 10 years old. He questioned what the 20 year results would be. I guess he thinks I will care what my boob looks like in 20 years.

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  • Sandymomto3
    Sandymomto3 Member Posts: 37
    edited October 2013


    Notdefiningus.....when I had my rads dry run and consultation last week, I was told the condensed version of radiation would not be the treatment for me due to my tumor size.


    So traditional 6 1/2 weeks for me. My first treatment is tomorrow. Stopped at Walmart on my way home from work for unsented Dove, Tom's deodorant, aquafor and some new cotton sports bras. Ready for this next step in this cancer journey.

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  • Kruise
    Kruise Member Posts: 330
    edited October 2013


    Thanks MsPharoah for the advice :-D

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  • canuck46
    canuck46 Member Posts: 93
    edited October 2013


    MsPharoah- Luv ya so much - you make me giggle and you delight not only with your humor but with your inspiration. So happy you are truly radiant. I finally reached the halfway mark and like you so far my skin is holding up well. I am getting so good at positioning myself on the table that I am in and out in 5-6 minutes!!!


    I wish you continued good health as you continue on your life's journey without BC and as your radiance lights the way. Hugs, M


    LisaSp - You've been through the war now hopefully RADS will be easy. Wishing you well and gentle hugs, M


    Bluebird144- Wish I could give you a great big hug - you are so brave but you don't deserve to be having such a difficult time - Hope your RO can get this worked out for you. We all are in your pockets and here for you. Gentle hug, M


    To all you radiant ladies one breath at a time, one day at a time and we shall all get through this together.

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  • springheart
    springheart Member Posts: 8
    edited October 2013


    hi Notdefiningus,


    I am on the hypo fractionation rad schedule. I am at a large teaching and research facility in FL, and perhaps some of these larger cancer facilities push out with the newer protocols earlier. They offered it to me as no difference in recurrence or long term survival. I jumped on it. I've only had 2 treatments so I have no side effects yet.


    Best wishes all!

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  • bikergirl
    bikergirl Member Posts: 112
    edited October 2013


    Rainnyday and OhhKay-


    I started rads yesterday, so I have 2/34 done. I am marking them off on my calendar. I look at it this way-we are closer to the end of intense treatment. I did 4 rounds of chemo. I feel we are all strong and can do this. Good luck!

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  • bikergirl
    bikergirl Member Posts: 112
    edited October 2013


    LisaSp-


    Had second rads treatment today. Went quickly. I just close my eyes and concentrate on a favorite song. You're getting your port out? I think I will wait until I go back for my followup after rads are done. Let me know how it goes.

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  • jbdayton
    jbdayton Member Posts: 700
    edited October 2013


    Jo hope you get a no chemo report tomorrow.


    To everyone just starting praying for no SE's and peace on the table. I think it gets easier each day.


    To those half way through it is progress, I will be half way after Friday's treatment. Good feeling.


    Canuck I am in and out quickly as well. Today it was 11 minutes from arrival to departure. Of course over 2 hours of drive time a day.


    Notdefiningus thank you for supporting your wife. Hope everything moves along smoothly.


    Good night my friends and hope tomorrow goes great.

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  • Rainyday13
    Rainyday13 Member Posts: 29
    edited October 2013

    OhhKay..I'm a little nervous also. Once we have this first one out of the way, I hope it gets better. Maybe it will even become routine. One can only hope. From reading the ladies comments, everybody is different and the side effects vary greatly. I hope that we can sail through this. I am going to mark it off on a calendar. Graduation day is December 13! :-)

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  • LisaSp
    LisaSp Member Posts: 253
    edited October 2013


    Thank you all. Yes, port comes out Friday, rads begin Monday. I saw my MO today and she said having the port out now is fine. Apparently, there is only local anesthesia and removal is faster than insertion.


    My RO is not doing breath hold technique on me unless I request it because its brand new for that practice and they just did their first patient today. I've decided not to request it because I don't want to have them do this on me until they're more experienced.


    Hugs all around, radiant ladies.

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  • kika2013
    kika2013 Member Posts: 101
    edited October 2013


    Notdefiningus--


    I am one of the people doing the shorter course--16 whole breast treatments and 5 boosts. I think it depends on the characteristics of your wife's cancer. In my case, I had a small tumor (8mm) with some DCIS around it, low-grade, no nodes involved. I had a lumpectomy in July and just today finished my 16 whole breast doses. I am being treated at Sloan Kettering in New York, and I trust them implicitly. If they think it's just as good, I'm sure it must be (again, given the right conditions). After my 16 treatments the whole area is fairly pink and I have one small-ish area of itchy rash, above my breast where there is less tissue (apparently this is the most common spot for this to happen). I am very fair, so perhaps a darker skinned person would be less pink (?). Other than that I have had no side effects. My breast looks and feels the same and I have been going about my regular life, complete with dinners out, my two crazy little kids, etc. I'm 42, and my radiation oncologist told me the numbers hold for women 40 and over. Needless to say, fewer visits to the hospital are always better. I am very grateful that I was a candidate for this protocol and am thrilled I have just 5 treatments left to go. I'm happy to answer any other questions you have. I wish you and your wife all the best.

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  • anne11595
    anne11595 Member Posts: 101
    edited October 2013

    CarlaK,I'm with you . I'm asleep in chair by 9, then my husband wakes me up to go to bed. But I'm up by 5 in the morning and take a nap in the afternoon. Glad you got happy tumor markers!

    Welcome Ohh Kay. This is the best place to be!!

    I am still having problems with my eye's. Had them checked out and could not find any thing. They said if the double vision was all the time it would be easier to help me out. Now if I turn my head certain ways my vision is blurded until I close one eye then I can see ok. But it does go away after a minute. It so crazy and hard to deal with.

    I to mark off my calendar every day. 23 to go.  No problems with it so far!!! I try to look at it as it gets me out of the house every day since my husband put me on retirement until its over with. I quess it's good to have your own business. But can't wait to go back and be my self again. Maybe with no hat on by then. The othier day it was real windy and I felt the wind in my hair and laughed my  butt off. The silly things we can laugh about!!

    Hope every one ends there week happily and have a great weekend!

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  • Annie54
    Annie54 Member Posts: 247
    edited October 2013


    I have 4 more boosts and then I'm done! Skin has held up well and the redness started to fade once the whole breast rads were finished and they started the boosts. For me radiation has been much easier than chemo and has flown by.


    Question on tumor markers. I'm scheduled to have a lactate dehydrogenase test in the next couple of weeks. From what I've read, this is a general test for "tumor markers". I don't think I've had one before. Is this the usual time, after rads, to begin checking tumor markers? What has been your experience with this?


    Annie

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  • rhcp66
    rhcp66 Member Posts: 14
    edited October 2013


    I am beginning rads on Monday, October 28th - having my test round tomorrow. Was supposed to have my test run yesterday and start today, but my heart was in the way too much and they had to reposition me and do a mold of me - so now I'm laying more on my side.


    I've read a lot about Emu Oil - so I ordered some of the refined kind - and hoping that works. I intend to use that along with the Aquaphor. My RO and NP had never heard of it - but they are interested in seeing how well it works. I'm fair skinned, blonde hair, blue eyed - and burn pretty easily. We'll see...

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    RHCP66, I burn easily too, but I found that I was able to tolerate radiation. I definitely got red and itchy and I am now finished and the skin is peeling but I only had mild discomfort and only at about treatment #21 or so. I had my last boost 2 days ago and even by the last boost, the rest of the skin was healing well. I am very comfortable and haven't had terrible fatigue either. Everyone is different and we all react differently, but I did well and I want to make sure that everyone knows that is possible.


    Annie54, all the MO's differ on doing tumor markers. Some do and some don't. And tumor markers can fluctuate for many reasons, so they are not reliable for everyone. My onc does CEA and CA27-29 but doesn't tell me the results unless I ask. Geesh! My MO is very well-respected in Las Vegas and I guess I am glad to have her....but I would switch if I wasn't planning to retire and move soon anyway, just because I feel patronized by her. (I'm such a little stinker. When my doctors patronize me, I call them by their first name)


    Anne11595, Hi gal and welcome to radiation land! I am so glad that you have been forced to rest until your treatment is over. It has been a long road and this is a time to build yourself back up. So the other day, I was taking my morning brisk walk and I decided to wear a hoodie...no wig, scarf, hat with hair, etc. About halfway through, I was getting warm and pushed by hood back....Out walks a neighbor placing his trash cans by the curb! So I have now been officially seen topless by a non-family member. It didn't bother me as much as I thought it would. I rub my head all the time...trying to stimulate growth. I am looking forward to feeling the wind in my hair!


    Have a wonderful day, radiant ones!


    MsP

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  • cakes
    cakes Member Posts: 157
    edited October 2013


    MsP - You are a blast. I so look forward to finding out what you are up to and your words of encouragement are heartfelt and special. Thank God for radiant ladies like you. My your locks grow back quickly and more beautiful than before.


    I also noted the healing on the majority of my breast began once the boosts were started. I am happy to report I am healing quite nicely except I have fraternal twins now not identical. lol!


    I was told by my onc that each bc patient's treatment is custom and I am certainly noticing that in this thread. That goes for surgery, chemo, radiation and hormone tx. (Having not gone through chemo I can only draw on other's experiences.)


    Remember to take good care of yourselves.


    (((Hugs)))

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  • summergal
    summergal Member Posts: 208
    edited October 2013


    MsPharoah - I have my first RO appt tomorrow, and I've noticed you mention that you had your radiation in the prone position. May I ask why? I'm such a beginner to all of this. Felt like I spent the last three months in Breast Cancer 101 and, having "graduated" at surgery, am now starting on my next semester - Radiation for Dummies. !!


    Thanks.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Summergal, hee he! "Radiation for Dummies" is too cute! I have right sided cancer and I wanted to have prone to reduce the radiation field to my lungs. They will normally offer prone if you are left sided to reduce radiation to the heart. But regardless, your simulation has to demonstrate the maximum "titty toasting action" in prone, otherwise they will do supine. I asked my RO about prone and he said he would simulate me both ways but he warned me that his job was to kill cancer and if prone didn't kill as much cancer, I would be doing radiation supine. I felt good that after simulation, he also preferred prone. I guess those old lady, floppy boobies, were a blessing after all! The radiation treatment in prone is similar to getting an MRI or stereotactic biopsy. You heist yourself on a table and place your boob in a hole with your face in a massage chair type headrest. It was pretty easy actually.


    Good luck in your radiant journey!


    MsP

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