March 2009 Rads Group?

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  • sgrimes
    sgrimes Member Posts: 28
    edited March 2009

    hello all - i am halfway through - 17 down, 16 to go.  for the most part, i feel like maybe the machines at my place aren't really working, or i am in some secret control group getting no treatment - i feel nothing, notice no changes in skin, nothing - it's like a just lie on a table for 10 minutes each morning, with no effects.  hopefully they really are zapping me!

    i do have achy knees, heels, and hip flexors - any ideas?

    also, my place doesn't monitor blood work, blood pressure, temps, nothing - is this typical?

    thanks all - sam

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  • Estepp
    Estepp Member Posts: 6,416
    edited March 2009

    Hi all, I might be joining REALLY late..hehe.. I will go for my 16th rads tomorrow. I have 33 total.

    I would not allow them to tattoo me, so I have marker on me and it has held up well. I have not burned yet... but I have had pain. I do these stretching exercises I did after mast surgery. and it helps. I was fully expanded prior to rads so I would have a good outcome later. Anyway... just want to say hi.. and tell a little about me and rads so far...:)

    Gods Love,

    Laura

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Sam, I'm not getting regular bloodwork here, either. THe attitude around rads here seems to be, :"if a problem crops up, we'll take care of it; but the issues with breast radiation are usually skin problems, so no need to monitor blood." I'm guessing if you had some other chronic illness, they night (kidney disease, say). But then I'm in Canada, where the protocals are a bit different--care is wonderful though.

    I'm not bothered by the lack of monitoring...it's actually a bit reassuring. If they don't have to check up on me all the time, then it's not as dangerous/painful/damaging. Which may simply be my form of denial Smile

    Hugs to all

    Martha

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Apologies for all the typos in that last message--I'm tired, it's getting late and my contacts are fuzzing up!

    Martha

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  • BooBee
    BooBee Member Posts: 860
    edited March 2009

    Thanks for the info Martha.  I'm liking just being told what to do during this stage.  I've decided to go back to work so I really don't have time to stress about rads.

    Is everyone feeling better now that chemo is over and some time has passed.  I have some fatigue but it's bearable.  I can't tell if it's the 18 LBS I gained making me tired or the residual chemo.  I walk 7 miles twice a week and that makes a big difference.

    Anyone use vitamin E oil only?

    Hugs, Renee

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  • Juli50
    Juli50 Member Posts: 859
    edited March 2009

    My rad simulation is tomorrow - 2 weeks later than 1st planned, but at least I'm on my way...

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  • nelia48
    nelia48 Member Posts: 539
    edited March 2009

    My Cancer Center seems to have a policy about blood work and they have taken blood constantly since I started there.  They have their own lab.  Sometimes, it's just a finger prick, sometimes it's three vials full.  During chemo, they checked it all the time.

    I do feel better now that chemo is way behind me.  I feel a little tired with the rads, but I can deal with that.  I'm on #14, and not showing much skin change either.  I'm slathering up every day afterwards.  It is a little red where I'm getting the heat treatments twice a week, but not burned or blistered, etc. 

    Sam, sometimes I wonder the same thing about the machines!  Strange things go through your head as you lay there all alone in a dark room.  I count the secnds the machine is on, hoping it doesn't break and keep on going!!!!!  I get 4 shots of the radiation in different positions -- one is 12 secnds, one is 16, the other two are less.  I got new x-rays taken yesterday again.  I asked why all the x-rays.  She said it was a precautionary thing -- they lay the new xrays over the old ones and compare and make sure that there has been no shifting, etc.  I like the fact that they are being very careful.

    Cora

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  • Britt
    Britt Member Posts: 731
    edited March 2009

    Hi Mamie and Patoo -

    Thanks for responding!  Nice to know there are others going straight to rads without chemo being necessary - congrats Patoo for your low Onco score - which is only one point higher than mine!  I know the relief you felt!  And Mamie, congrats on deciding to bypass chemo with an Onco of 22 - of course, other factors are always taken into consideration!  How is it going so far?

    Patoo, your simulation is the day before mine!  My med onco is starting me on Tamox after the rads are over - and I already had my CT scan two weeks ago - I suppose every dr has their own schedule - but great good luck with that - and I hope you continue to have no SEs with the Arimidex!

    Now - for a good cream - doing LOTS of research on that - those of us who are ER+ have to be careful about the parabens.  Mamie, I did read your cream choices - I must check them out. I have also read that pure aloe vera gel is also very effective!

    Have a great day, ladies!

    Maria

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  • CindaD
    CindaD Member Posts: 120
    edited March 2009

    Hello Ladies, anyone have any idea how tired we may get from this?  My hubby seems to think my butt will be dragging by the end.  I'm still a little tired from chemo, can't shake it, been trying to exercise more, boy am out of shape from being a couch potato for the past few months!

    My skin is already turning pink and my incision feels weird, I was hoping this was going to be a piece of cake next to chemo, still hoping.....I guess I was expecting to fly thru without any symptoms!

    Have a great day!

    Cinda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Two down, 23 more to go plus 5 boosts.  The appointments for my first week are all in the morning, however, I am thinking of changing to late afternoon.  I have read and heard that by around week 3 or 4 I could be feeling quite fatigue.  Not sure if everyone gets the fatigue or how bad it might be.  I am using Lily of the Valley Organic Aloe Vera, plus Vit E ointment and Calendua cream after my rad appts and before bed, so here's hoping it helps reduce/eliminate the potential burning.  I did order the radiation cream suggested in this group - I think it is called My Girls Radiation Cream and am looking forward to giving it a try when it arrives. 

    Has anyone had a really good explanation as to why you would need to do rads if you already went through chemo?  My understanding is that the chemo kills off any cancer cells that might be cruising around the old body and that radiation is supposed to "help" prevent the cancer from reoccuring in the same area.  Well wouldn't chemo do that anyway if it supposedly kills off any cancer cells in your body?  Love my oncologists however, still have not had a really good "ah that makes sense" explanation. 

     Best wishes and love to all...I see the light at the end of the tunnel and thank goodness it is not a freight train coming in my direction.  Cool

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  • Mamie2
    Mamie2 Member Posts: 108
    edited March 2009

    My hat is off and I am bowing down to my chemo sisters. I have decided not to do chemo but I think all of you who have gone through it are heros in my book. Congratulations! I went in for my first rad yesterday and they hooked me into the doctors exam room. (I was like, WHAT NOW?) Dr said he got a phone call from insurance med director re-opening my case for IMRT. After all that last night my dr spoke with this dr last nite and he still denied it. Why do these people think they can continue to #$%!(expletive inserted here) with me!! I was highly agitated. I have put in a grievance with my insurance. Not only have they denied me twice, but they interruped a rad schedule I was already 3 weeks late for. Big breath in and out. And we're supposed to keep the stress low. Come on.... Please anyone, if you have documentation that IMRT is NOT experimental and that it is State Of The Art, pls contact me. Thanks a bunch. I hope everyone is doing well.

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Mamie that is so not right. Wish I had studies for you....

    Purple, my rads onc told me that for me personally, they wanted to do rads because I had narrow margins and am triple negative (hormones and AIs are useless for me, due to the kind of tumour I had), so this is my one chance to hit it with everything in the arsenal. Also it was Grade 3.

    Now that you mention it though, it does seem that chemo would get ANY cancer cells in the body... I don't have an answer either.

    Three down, 32 to go!

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  • caligrlof68
    caligrlof68 Member Posts: 323
    edited March 2009

    Ok, so I was supposed to start rads on the 23rd of March....but i saw my surgeon today and he had to cut my wound open and get the dead tissue out of it....so he said no rads for 2 to 4 weeks from today..Looks like I'm gonna switch to the April Rads group. Ta Ta... nice knowing you all...see you around!!

    Stacy 

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Oh, Stacy--sorry you have to face this delay! Hugs and good luck to you!

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  • LuckyLindy333
    LuckyLindy333 Member Posts: 8
    edited March 2009

    Hi Everyone,

    I got my tatoos and a CT scan and will start radiation on March 23rd.  This is so great to be part of a group of women going through the same thing!  I finished chemo on February 20th after a mastectomy last September.  I think you are right Caren, take it one day at a time.  BTW, I am in the state of Washington.  Hugs from me too,

    Linda 

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  • LuckyLindy333
    LuckyLindy333 Member Posts: 8
    edited March 2009

    I am not going to have any bloodwork as far as I know- which I feel is kind of refreshing.  I see the doctor every Wednesday to tell her how I am doing.  I have rads five days a week for 26 treatments.  She did tell me that if I start to not feel good and think I am going to have to skip a week to call in on Monday so that I would have the whole week off.

    Hugs to all,

    Linda 

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  • Mary22
    Mary22 Member Posts: 779
    edited March 2009

    Friday will be # 15 then I will have 18 more to go. If all goes well I finish rads the same day taxes are due.

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  • caligrlof68
    caligrlof68 Member Posts: 323
    edited March 2009

    Happy Tax Day in advance mfgibby!!

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited March 2009

    Purple, what I read is that chemo gets cancer cells that it gets to via the blood. There may be stray cancer cells in the breast that aren't close enough to blood supply to have gotten killed by the chemo drugs. Radiation cleans those up. The cancer cells cruising around your body were hopefully cruising via the blood or lymph systems so the chemo should have gotten them.

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  • Juli50
    Juli50 Member Posts: 859
    edited March 2009

    I will start radiation on Monday afternoon, if the results of my mammo come in. Unfortunately, my original films have disappeared so they will have nothing to compare them to. geez...

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  • SusieMTN
    SusieMTN Member Posts: 795
    edited March 2009

    Hello Ladies!  2 down and 30 to go.  Do any of you feel anything while receiving your radiation?  Pains, twitches, anything?  Just wondering. 

    FYI I spoke to a women who had chemo up front, surgery (MRM) and had completed her rads with no fatigue at all.  Lucky her!  

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  • kristifromsandiego
    kristifromsandiego Member Posts: 271
    edited March 2009

    All this info has been great.  I got mapped on Tuesday and start 28 sessions Monday.  I hope by the end to have a bit of HAIR.  I don't start Tamoxifen till after rads are done.  Where did you find the Emu cream?  I am suppose to do jury duty beginning May 4th so I am trying to get the doctor to get me out of it.  Anyone else's plastic surgeon not letting them do replacement surgery till 6 months after rads?  Thanks  Kristi

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009
    Kristi I got the emu oil at a health-food store. It's kind of expensive but if it works as advertised, it's worth it!
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  • CindaD
    CindaD Member Posts: 120
    edited March 2009

    Purple, my onc told me that the chemo doesn't really affect the scar tissue around our incisions, but the rads will, so that's also a reason we need to have it!  My techs found out I'm a Jimmy Buffet fan and played his music for me during tx yesterday, I asked them if they could have a margarita ready for me today, then I'd feel like I was at the beach!  It's nice that they're trying to make this fun for me, takes the edge off of going everyday.

    My hair is starting to grow in! I scrutinize it everyday, can't wait to take my scarves off, as soon as all of my bald spots have hair I'm going scarfless! I already do when I walk, it's just to darn hot!  Saw my onc yesterday, he informed me that I will probably gain wt with the Tamoxifen, gee thanks!  I'll add that to the 10lbs I already gained from chemo!

    TGIF

    Cinda

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  • NancySchoen
    NancySchoen Member Posts: 32
    edited March 2009

    Kristi.....I had been scheduled for Jury duty also, I called the number and explained that I was going to be having treatments for breast cancer and they took me off the list without a doctors letter. But I am sure if you need one it will be no problem as your doctor will know that jury duty would be way too much for you after everything you have already been through. When is your last date for rads? They told me that it would be a month or more before I did not feel fatigued from the rads. In the am when I get up I feel good. I can exercise on the elliptical for 20 minutes. Do all my little morning chores like the dishwasher and a load of laundry. Get ready for my rads at 10 and then come home and have lunch. I then do something quiet at my desk or read. By 2 I am done for the day I have to take a nap. The rest of the day I can not do anything that requres a lot of effort. I went to lunch two days this week with my girlfreinds and they wanted to go to a couple of stores. I thought I felt I could do that. Basicly by Thursday I was in bed sick. For me when I get fatigued it triggers a migraine as I have them even when I am not having treatments. When I get that then I get sick. So I realized I am not as strong as I thought. I guess I could do lunch but no shopping. As they say pick one thing that you really want to do. Good luck on Monday. I am going for #19 today only 14 more to go!!!! Nancy

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  • nelia48
    nelia48 Member Posts: 539
    edited March 2009

    #16 today.  My skin is still pretty good looking -- a little red, but no burns or discomfort.  I have been a little tired, though.  I hate the everyday thing, but resigned to it and determined to get through it all.  Glad today is Friday and the weekend is coming!

    Cora

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  • NancySchoen
    NancySchoen Member Posts: 32
    edited March 2009

    Susie.... I do not have any pain during rads. However, lately I have some involuntary twitches of my body but I have those sometimes at night when I am relaxing to go to sleep. The rads are like having an x ray. I was very nervous for my first one too. It is the unknown. I could not sleep the night before my first treatment. I was a little better for the second and now that it is #19 I am actually joking with my rad techs. It least it makes it go by quicker. I have had so much stress as have everyone else that at this point I decided to just go with the flow. I am getting red and a little dry skin but using the rad cream the dr gave me and it seems to be workng. Good luck. Nancy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hey bluedasher and CindaD...thanks for the info re "why rads"...both good points ...OK..guess I'll continue with the rads..LOL.    CindaD..my hair is starting to come back in and most times I forgo the wig or scarves because I am really finding my head gets very hot.  

    Three down, 27 more to go...but who's counting Laughing

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  • TorchSong
    TorchSong Member Posts: 348
    edited March 2009

    Who's counting?! Me!!

    4 down, 31 to go....

    Martha

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  • thegoodfight
    thegoodfight Member Posts: 560
    edited March 2009

    Martha,

    Glad to see you are doing such a good job in my "slot".  I knew you were the right lady to hand it to.  I also had a total of 35 and you know I finished Monday as you started, and I am delighted to say my skin has healed incredibly in the four days.  There is lots of light at the end of the tunnel.............................you will get there soon,

    Caren

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