JUNE 2011 RADS

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited June 2011

    I had my first one today! It went pretty well. Too bad the 27 y/o male tech isn't there...haha. I have a male tech but he's a little older. I'm pretty used to it now as well.

    I'm also using miaderm. They gave me samples b/c my insurance won't cover anything else. 

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  • mostlymom
    mostlymom Member Posts: 466
    edited June 2011
    I had my 3rd of 33 rads this afternoon.  One of the ladies I chat with in the waiting room told me she had her 2nd lumpectomy after being clear 30 years & said she was 84.  As I was leaving I said "see you tomorrow" & she said "no - today is my last one!"  I had to turn around go back & hold her hand & tell her how happy I was for her & wished her good health."  That started fresh tears of joy for her from me - then about half-way home my energy vanished & I arrived home a weeping mess.  After resting 2 hrs I feel much better - I really don't cry easily & it usually gives me such relief when I can let it out.  So this pity party ended up being good for me!  Cry
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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2011

     Hi all..just catching up..today was treatment #6 for me. No pink yet but was warned since I am so fair I would probably burn. However, I wasn't told to use any creams yet..but it sounds like most of you have been using creams or lotions from the start?

    Regarding the lymphedema..my hand started swelling a week or so BEFORE rads..and my surgery was back in November so can't blame the rads I guess.

    Regarding holding the breath...I was supposed to practise holding for a minute but couldn't make it past 30 seconds so was told not to worry about it and don't do that for treatments. I do have a mold they made for my arms but of course it was done in the CT scan room and now that I am in the rads room the rads machine is right against it. The mold really doesn't fit comfortably.

    As an added challenge my legs are still very weak from the taxotere ( 5 weeks ago) and I use a cane for short distances but need a wheelchair to get through the hospital to the rads department. This all makes the experience more of challenge but so far I'll still take this over chemo any day.

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited June 2011

    I had my 2nd treatment today. I had to be insistent on creams Emily. I asked the tech today where the radiation was hitting my back so I would be sure and get the cream in the right spot. He said...you don't really need to even use cream yet. You're going to burn anyways, but it probably won't happen until sometime around your 25th treatment. The cream might help you go a few more days without burning, but it's going to happen anyways, so you don't really need to worry about it right now.

    Um, hello? I'll take a few days. Geeeeeeeeesh! Whatever. I'm putting the cream alllll over me! =) 

    Emily, have you been able to make an appointment with a LE therpaist yet? I started seeing one consistently last week. My hand is mainly the only thing I notice swelling. Mine started about 12 weeks ago though so I can't blame it on rads either. I don't know what triggered mine. I've heard though that early treatment is key to getting it under control. Have you visited the LE boards yet? They are full of helpful information. And I'm not comfortable during rads either. It is very uncomfortable for me in my shoulders...

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011
    Ladies: WE WILL  have an awesome week!!! We can get through this one step and one day at a time.. I am now on my downhill run! 15/28 and even with my SEs I am doing great!!! Just remember to slather a thin coat of aquaphor on at night - and you all will be fine Laughing.  I have made it through this long with only the pink I was on day #4... I know its the creams so Melanie, when you start seeing the pink thats when you need to start slathering.. in the beginning they gave me 100% aloe and aquaphor...If you aren't pink yet, no worries... but what the tech said to you - I would have hit her! I know better...Mine started on day #4!
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  • anonymice
    anonymice Member Posts: 532
    edited June 2011

    Hi - I just had my initial scanning appointment today - tats and rads start Thursday.  I am completely unprepared.  I think I'm having 33 treatments.

    I had 7 months of chemo which worked (tpr), and then a double mx 4 weeks ago.  Now we start the last treatment that will be a major pain! 

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited June 2011

    Where did you get the aquaphor? I'm using miaderm b/c my insurance wouldn't cover anything.

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  • Melanie_Ann
    Melanie_Ann Member Posts: 414
    edited June 2011

    Pam- are you having RADs at WVUH? I am...I was just wondering if we are seeing the same doctors. 

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited June 2011

    I am new to this thread, but not to the forums. Great gals no matter what the conversation! 

    I will see the RO on Thursday and probably start next week with actual treatments. Does anyone have a list of questions that they asked? I researched so much on chemo, and triple negative (ack), and just have done nothing to prepare much for radiation.

    I can see the first question will be about creams...starting immediately rather than waiting until the skin turns pink!

    Melanie, I got Aquphor at Shopko, I believe, or possibly Walgreen's. You don't need a prescription for that. It was on some list I saw on this site somewhere...probably before, during, after chemo. That's the one thing I have on hand, but am seeing that other creams may be more beneficial.

    I expect to be popping in more frequently after Thursday!

    Kristy (aka Huskerkkc) 

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  • anonymice
    anonymice Member Posts: 532
    edited June 2011

    Yep, sure am, Melanie Ann!!  :)

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  • Elizabeth37
    Elizabeth37 Member Posts: 84
    edited June 2011

    Melanie_Ann I had my 2 treatment today also, My first appt they told me to start using the cream 2 to 3 times a day they said better to start early than later

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  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2011

    Melanie...I saw the Lymphedema Physio some weeks back while still on chemo and she gave me some exercises and a temporary tensor sleeve. My arm and hand were only minimally swollen then and that seemed to clear until 2 weeks ago when it got much worse. Physio said they'd see me after chemo was done but still waiting for that appointment.

    I see the rads doc tomorrow and will ask about creams...

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011

    Melanie Ann: You can get aquaphor at walmart or any drug store its in the same place as the lotions and creams... i got a jar of it for $6. Most ladies get 100% aloe for the day time then aquaphor at night.

    Huskerkkc and anyone else that is new here - there are 2 things on the first page of this  forum.. One is a list of things plus kinda dos and don'ts - the second is a list I got from the nutrionist toward the bottom of the page.... YOU DON'T WANT TO LOSE WEIGHT DURING THIS PROCESS!!! - Your weight will come off your muscle mass not the fat.... But my nutritionist showed me what to eat and what to have around that is good protein for this time - to help your body heal... 

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  • tdsmgb
    tdsmgb Member Posts: 9
    edited June 2011

    got my tats today, last of Taxol and herceptin will be 6/27, chemo port out 6/28. Dry run is 7/1 begin 35 days of "fun in the sun" 7/5.  My rad dr is a pain, made me sign a statement saying I am beginning radiation against his advice.  He wants me to wait 3 -4 wks.  No medical reason why, he just said it was protocol.  His assoc is starting a friend of mine 2 wks after her taxol ended. Protocol?  My rad dr also told me I would get cancer again, he said chemo and radiation mutates the cells and I will get cancer again, too bad for me being hormone neg and her2 pos too, oh well he said, it is worse than trip neg.  wow way to instill possitive attitude bud.  I am stuck with this group too, seems no one really likes their attitudes.  Got yelled at when I questioned his methodology too, was told I am the patient and he is the Dr and he knows best. Really, do tell, did not know I had no say in my treatment, my body, my life...guess not.  I will keep on questioning this Dr as I plan on outliving this guy, for me not a good possitive role model in my life.  Good thing I only have to see him 1x week too.  The technicians are really nice though and that is a blessing. So I start my trip through radiation 7/5 whether he likes it or not.

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  • mammalou
    mammalou Member Posts: 823
    edited June 2011

    Hi, I'm curious.  I see a lot of talk about eating a lot during radiation.  Does radiation actually cause you to lose weight.  I haven't actually lost any yet, but it wouldn't break my heart to lose some!  I have started the reconstruction process and it seems like the radiation is changing the shape of my tissue expander a little.  I see a ripple.  Is this normal?

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011
    Mammalou - not eating alot - eating the right foods - mainly protein.. what actually causes you to lose weight - is sleeping through dinner when you are exhausted and not eating...  The body is working on healing.. you DON'T  want to lose weight now - you will lose muscle instead of fat if you do...
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  • Maybe484
    Maybe484 Member Posts: 170
    edited June 2011

    Hi, all, I had my simulation today.  My RO said that I would be a good candidate for the Canadian/European protocol and recommended for me--I think it was--17 days of rads and 5 days of boosts at a slightly higher dose.  I'll begin in a few days.  I was also told to begin slathering on the lube before I begin treatments.  Good luck to all!

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited June 2011

    Maybe484...What makes a good candidate for the Canadian/European protocol? 

    tdsmjb...OMG...what kind of beside manner does that rad doc have? I meet mine Thursday and my regular onc told me not to be put off by him...he's kind of a "worst case scenario" presenter. I don't mind hearing it like it is and I know they have to tell you all the possibilities, but it is the WAY they tell you. You can tell things in a way that doesn't scare the @#$% out of people but they still know what they are in for. I guess it is good you only  have to see this guy once a week, but too bad you don't have other options. My options are limited too, unless I want to drive 70-90 miles one way or stay with my parents during the week for a 10 minute daily procedure! But I haven't met him yet so will give him a chance...just have heard that others don't like him very well.  

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  • vickilf
    vickilf Member Posts: 95
    edited June 2011

    I would like to know where u saw that green tea made leukemia worse?  I have leukemia and breast cancer now, and I have been on green tea  by my naturopathy for my leukemia for months now. Do u know where the article is?

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011

    Vickiff I talk to the nutritionist tomorrow - I will ask her about it - and will research it a little. I wouldn't worry about it but I know she said it was new research results..All the research I find is pro or inconclusive if it helps or not.

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  • 55Classic
    55Classic Member Posts: 1
    edited June 2011

    Use cheap shaving cream to bathe under your arms.  The foam penetrates the hair and kills the odor causing bacteria.  It is amazing how well this works!  

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  • karebear76
    karebear76 Member Posts: 288
    edited June 2011

    Today I will be 1/3 done with rads!!! 

     tdsmjb: Sorry you have a lousy RO. These docs are suppose to be there to support us in our battle not bring us down. That is just awful.

    I saw my nutrionist at the rads office and she said I could loose 1lb a week and my PS said the same thing. I am not dieting just exercising and trying to eat better. Notice I said TRYING!! :) I lost 2lbs over the last week. I am very overweight and maybe that is why they said it was ok. dunno.

    Tomorrow is herceptin #2.

    Have a great day all. 

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  • anonymice
    anonymice Member Posts: 532
    edited June 2011

    Good gosh, tdsmgb.  Is there really no way you can see someone else?  What an ass!

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  • suebak
    suebak Member Posts: 199
    edited June 2011

    Had 12/34 today.  I thought I was having 35 treatments, dr said 34 today.  My breast is a little sore, but I also have a black ring around the nipple. Dr says he will keep an eye on this. He says it may be some blood under the skin from biopsy.  Has anyone had anything like this?

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  • Dayzeroze
    Dayzeroze Member Posts: 36
    edited June 2011

    had a dmx in april 14 lymphnodes removed 

    Started rads last week thursday already have pink burning skinYell sensative skin but i wanted to know if anyone had nausia from it.  or am I just getting the flu

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  • Maybe484
    Maybe484 Member Posts: 170
    edited June 2011

    I should've asked what made me a good candidate for the Canadian/European protocol.  I don't know.  But from what my RO was saying, it sounded to me as if this would be an option for lumpectomy patients with clean margins and no LNI.  I was hoping that I'd escape WBI, since my tumor was in my axilla, but no such luck.  I'll be having the boosts in my axilla--not looking forward to that part, as the whole area is very sensitive there, due to two excisions and a SNB within the past two months.

    ETA:  Article on hypofractionated radiation  http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2010/022310/page2

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  • karebear76
    karebear76 Member Posts: 288
    edited June 2011

    Dayzeroze: I get some nauseousness since rads started. It isn't bad but just here and there. I also have sensative skin. i have been lathering on Vitamin E and Avocado cream and it works great!

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited June 2011

    Try the Target brand of Aquaphor..............Big jar..........much cheaper, less greasy, and it worked great for me.........................Compared the ingredients and they were identical....................had no real problems using it, and I finished exactly 1 week today..........................good luck ladies.................and I to have LE.  6 visits to an LE specialist (board certified on LANA), and she is great...............mild case, caught soon, and I'm ready for a sleeve already................You can do this ladies...............

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited June 2011

    Maybe484  - the Candian way is 16-18 higher dose radiation treatments instead of 28-33.. Unfortunately for me my doc is doing the slightly higher dosage with 28 treatments.. But I don't have to do boosts at the end..

    Dayzeroze - I had a week of nausea my 2nd week - they gave me a few compazines incase it was so bad I felt I was going to throw up... RO also told me to eat ginger snaps or other ginger products and have crackers on the side of the bed to eat before I get up... Man it almost sounds like I'm pregnant LOL (I'm postmenopausal Wink) Anyway, for me it seems to come in waves I'm feeling great one minute and the next I'm sick again... This week seems better...

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  • Maybe484
    Maybe484 Member Posts: 170
    edited June 2011

    That's correct. I'm having boosts because my tumor was in my axilla.  I'm dreading rads and expecting lymphedema.

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