Any April/May 2012 rad girls out there?

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    amcarter - couldn't get your link to work but .... I know that I certainly have "chemo brain" and I did not have chemo.  I can be in the middle of a sentence and then "poof" it is gone.  I was never like this before all of this ... maybe it is the stress of it all too.  I will try and find your post.

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  • amcarter
    amcarter Member Posts: 21
    edited April 2012

    MOT:

    Yes "chemo brain" would certainly be a misnomer if chemo isn't the only cause. Since the study was done using breast cancer patients maybe we could all come up with a new name. LOL!

    Joanne_53 & everyone:

    I found another article about it that has a little bit more detail:

    http://www.philly.com/philly/health/news/135437153.html?c=r

    or you can just google "radiation may also lead to chemo brain".  This article says the study was done by Paul Jacobsen, of the Moffitt Cancer Center and Research Institute in Tampa, Fla.  I have a science background, in microbiology and biochemistry so I would love to get my hands on the study itself and read it but I haven't located that yet. 

    I'm sure that stress also has a play on the "cognitive impairment" too.  Distracted by cancer - surely not! Smile

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2012

    DH and I were talking about what I want to do on my last day, may 2. ....I started getting emtional..its been such a long journey since dx last july, all the bxs, mast with TE, over 5 months chemo, now 5 weeks of rads coming to close.I suppose i have PTSD now. Its been so incredubly hard, and the only person that has trully been there that knows how hard it was is my husband. Kids are finally starting some therapy for all the stress its put on them. This has been one fucking sucky year, worse then the year our younger dd was dx with type 1diabetes. Im a little hurt i didnt get much outside support. I realize everyone has there limitations.



    What is everyone else doing to celebrate? Im afraid i will cry. My TE is tight, breast burns pinkish, still some lingering chemo effects. I feel like ringing that bell and collapsing in dh arms. I think my family wants to go out. I have done all this and my MO said 30%return even with tamox.



    But i can lower that by intense exercize and diet



    Just feel so emotional now

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    Lucky 13th treatment this afternoon.  I think I'm doing OK with the skin so far.  It's quite pink imediatly after treatment but I slather on the miaderm and put a tank top on and go home braless.  Then I stather more cream on before bed and by morning I'm back to almost matching.  Can put a soft loose sports or sleeping bra on for the nine hours until treatment time.. Not really sore.  Just have that tingly feeling.  I'm being really aware of wearing soft silky tops. Nothing with lace or other abrasive  decorations, seams, etc.,  Using baking soda to deal with moisture.  So far so good. 

     As for the "chemo brain" well, I lost my ability to complete a sentance, or remember where I was going about the time the radiologist said "I will be getting your results about 10 tomorrow morning. Call me on my cell.  Your doctor will no doubt have recommendations about which surgeon she'd like you to see...  " So for me, it's stress.  I didn't have chemo so that's no excuse but stress?  Yeah. I've got that.

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  • MOT
    MOT Member Posts: 130
    edited April 2012

    Cindyl -- I agree! It definitely is stress-brain, I remember that day when my PCP said "I will find you a surgeon." Glad your skin is doing well.

    fredntan -- Yea! You are almost done! My BDay is May 3rd so I will be thinking of you celebrating!

    luvmygoats -- Good luck with the second 1/2 of your treatments.  You go girl, I'm with you! Will be looking at more camisoles though I really hate to give up my armour bra.....

    wiskris --ha ha, well at least your rads are not boring!.....and you are bonding with your rads people......!

    Thanks for everyones suggestions on skin care, clothing, etc. It has been really helpful!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Good Morning Ladies.. number 13 for me today as well!! I met with my rad onco and reg onco yesterday. Discussed the pain that I am feeling in my shoulder and breast, and the fatigue. I was told if the pain is not controlled by otc, then to use thescripts I have. I hate that, as they make me even more tired.  At times if I use my right arm too much, the pain is horrible. My PT says she thinks it's the old frozen shoulder or from the muscle being radiated.. whatever it is, it hurts. Do any of you have the deep stabbing pain in your breast area? These stabs stop me in my tracks and have me holding my boob..

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    Yes Lory, I've had a couple of stabs. Not many thank heavens. Maybe once or twice a day, If you're having a lot of those you have my profound sympathy!

    My arm gets sore and stiff if I DON"T move it enough.  If I spend a couple of hours working on the computer without taking a break, I pay for it.  I need to move around, go get a drink, and do some light stretching every 30 minutes or so to feel my best.

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    Lory, I have the stabbing in my breast as well as severe nipple pain.  I do look rather silly grabbing at my boob but it actually feels best when I am holding it.  I take aleve and would like to ice it but says not to.  I had been going to physio before radiation for my shoulder but stopped because of the schedule but have to start again because my shoulder is giving me serious problems again.  When I am finished each day I have to assist bringing my arm back out of the supports -- the range of motion is good but cannot do jumping jack movements ... before rads I was at the stage that I could do them pretty good with very little resistance or pain.

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  • dechi
    dechi Member Posts: 173
    edited April 2012

    Anybody having increased trouble with lymphedema since starting rads?  I've been having some very slight swelling in my arm, index finger (weird) and trunk.  I started seeing a lymphedema specialist and she said it's common for women to get swelling in their trunk and just think it's post-surgical side effects when its really LE.  I don't think docs (BS) give us enough info about LE before surgery other than the fact that it's a possible risk of having surgery.  It would have been nice to know what the early signs are to get a jump on it.  I learned about cording, LE, etc, all online.  I wonder if it would be helpful to send women, especially those of us who have had axillary node dissection to a lymphedema specialist even before you have symptoms just to get educated....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Welcome to the newcomers...

    Sandyland, I posted about the weariness regarding 7 months long txs and then read your post!  We are sharing the same thoughts.

    I'm tired of my body (boobs) being looked at...I've taken to wearing shoes (not sandals) to rads b/c I hate anyone touching my skin anymore (they put that rubber-band thing around my feet to keep my legs still)...

    It's become simply a grind.  But I'm soldiering on and it sounds like the rest of us are too.

    Although I haven't had signs of it I'm supposed to see a lymphedema specialist soon so he can get baseline measurements and show me how to do the massage...I spend a lot of time in the field where medical tx is hard to come by quickly, and need to know how to take care of myself if it indeed does happen...just getting prepared.

    XO

    Claire

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  • Sandyland
    Sandyland Member Posts: 262
    edited April 2012

    Wishn4one ~ Welcome :)  I met with my RO yesterday and he sits down and makes me feel like he's not in any big hurry.  He asks all the pertinent questions and then always makes sure that all of my questions get answered.  It sounds to me like your guys isn't very thorough.  If I were you, I'd make sure to have a list of written questions each time so that you can get everything possible out of him.  Good luck!

    19 of 36 done as of yesterday!  My skin is now suitably red and itchy, so we will be discontinuing my bolus use as of today ~ Yahoo!  

    I was describing my throat issues to my RO ~ very scratchy, sometimes feels like something hard is stuck in my throat ~ and he got a very weird look on his face.  He said that is exactly how rads patients who have to get head/neck radiation often describe what it feels like when the esophagus is affected.  However, there should be no reason why my esophagus would be effected.  He is sending my chart to his doseologist (??) to have him check if maybe I have a weird anatomical thing like if my esophagus is abnormally close to my chest wall or something.  Good grief...it's always something.

    SAN

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  • bethm
    bethm Member Posts: 45
    edited April 2012

    Well, went in for treatment, excited that it was my half way mark, and the machine was down. Don't know why after all the emotional highs and lows we go thru, that this really bothered and upset me. I guess I had an end date in my head and now instead of celebrating that weekend I have to go for  treatment on that Monday. Oh Well!!!

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2012

    Ive been complaining about weird throat pain for weeks one tech said it was probably from radiation scatter, but the nurse said that isnt possible. Blamed the chemo. Seems routine for each doc to blame the other.



    Have weird feeling my hand aching is from chemo.

    Sigh

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited April 2012

     I think it's pretty easy for people (outsiders) to say chemo brain. I personally agree with some of the others..that it's 'stress brain'. I had chemo, and while my brain was functioning at about 80%, I chalked it up to stress and fatigue. At my darkest hour, when I was on steroids, I was down to about 4%, and a raving lunatic. Now with  radiation I'm up to about 82%. 

     Fredntan - I hope you do something fabulous to celebrate. I feel like you do - this year has been a bitch. We don't have any bells at my hospital, but I wish we did. It's been a year of triumphs. And when you do come up with plan - remeber that it's your party and you can cry if you want to!

    I plan on doing something fabulous as well. My body needs some loving. Meanwhile, I'm walking around my house, topless, with the blinds down, slathered in aloe gel, determined to do everything I can for my skin so I can save the tissue on my poor lopsided breast.

    Halfway through now, and so far so good. 

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    My RO asks specifically about mouth and throat pain everyweek when I see him and that's one of the things I'm to report to a nurse or tech right away, so my Dr. certainly seems to think it could be caused by the radiation.

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  • Nicole4
    Nicole4 Member Posts: 104
    edited February 2015

    Fredntan, I have aches in my hands as well. I assumed it was from chemo, but not really sure.  Also in my feet and knees, but I am on Tamoxifen and herceptin, could be a number of things in fact. 

    On day two of rads, I went into this thinking it would be easy compared to chemo, but its not, I am really scared, I hate it and I have 23 to go.  After my first rad yesterday, I had pain in my arm and shoulder last night, I can't imagine how it will be feeling after 4 weeks.... I went to relaxation and visualization today to prepare, but it didn't seem to help, I am wondering whether anyone got used to it, am I going to feel this way in 20 days.

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  • Gayle56
    Gayle56 Member Posts: 277
    edited April 2012

    luvmygoats   Why don't you like Aquaphor - it is a bit greasy but it washed right out of my bras.  I have some cotton sports bras that I bought after my lumpectomy and are still wearing them.   They weren't expensive so I will just replace them when rads are over if I need to.  The RO said he could give me a prescription for something else to use if I want.  I will check to see how much the xclair will be if my insurance wont cover it, I want to call them tomorrow to see why they aren't.  I am not sure they have my husbands insurance under my file as well so his might actually cover it.    So far no reaction to the rads so I am just using the Aqua for now.

    Gayle

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  • fredntan
    fredntan Member Posts: 1,821
    edited April 2012

    Im used to it now. Those first few days just scared me.I was balling my head off. I think my hand achyness is coming and going. So maube its tapering down.

    Itry to stretch my arm out as much as I can. These weeks seem to have flown by

    My rad tech says these feelings are normal. He was in tx 4 years.



    Be strong nicole your body has just been through so much

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  • MOT
    MOT Member Posts: 130
    edited April 2012

    Well, treatment #1 done. Had 2 girl rads techs, they were both very nice and considerate and covered me up with my gown when they weren't marking me up with markers and taking photos.

    Feel fine, don't notice any difference. The nurse gave me some miaderm samples -- I had ordered some online and should get it before the weekend. On my first consult visit with the RO, an assistant took several arm measurements, both R and L for a baseline. So far so good. I am still working on my shoulder range related to my LX scar which still feels tight -- in the shower with hot spray so I have to finish that up before I get sunburned.....My only concern now is I have the 8:15 am appointment -- have to leave my house around 7am! Good thing no worries about snow and ice..... Smile Only 24 + 5 boosts to go.....!

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    Nicole, I had physio (and acupuncture) after surgery for my shoulder and arm -- I am going to go back because I am experiencing the same problems now since starting radiation.  The pain is so bad it wakes me up.

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  • mamglam
    mamglam Member Posts: 178
    edited April 2012

    I had my 13th treatment today and my blisters are more like open sores now.  The nurse examined and recommended keeping them covered with dressing.  More fatigue and achyness but that could be because of Shingles.  The nurse also commented on the fact that the sores will probably take longer to heal as the treatment continues.  Only 3 more to go!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Wow Mamglam!! Blisters? I just had #13 and my skin is doing quite well.. hugs

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    Mamglam, I hope things get better.  I had my 12th today and so far so good -- I will say though my nipple is really sore -- the breast is very tanned -- I am slathering the lotion all over now ... as often as I can.  Otherwise the skin is good.  Thankfully I only have 4 left.

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  • MOT
    MOT Member Posts: 130
    edited April 2012
    mamglam -- You have just 3 more to go! Smile  Of course your 13 equals about 26 treatments in the US......and the shingles doesn't help.... Hang in there!
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  • MOT
    MOT Member Posts: 130
    edited April 2012

    Great Joanne -- You are almost done! Hope your last 4 are EASY!

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    Good luck MOT --- the biggest nuisance is the getting there -- it certainly is tiring and stressful going everyday -- thank goodness for weekends.

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  • mamglam
    mamglam Member Posts: 178
    edited April 2012

    Lory48, I had 2 fluid filled blisters(vesicular) on my affected breast and now they are just open sores.  These were what got me diagnosed with shingles.  Hope that all of you ladies are doing well.  Joanne_53, have you tried using some Proshield on the nipple?  You can ask your center or RO for some as mine gave me some.  Thanks for the support MOT. 

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    13th treatment today and not a hint of "tan"  still just gets a little pink right after treatment, mostly back to the same color as Ms. Lefty by morning.  The incision is a little redder than it was and the nipple is a bit brighter.  But nothing drastic.  Maybe I'll survive the next 20 without as much burning as the RO thinks?  Hope so.  Knock on wood and all that.

    Sure hope the shingles don't give you much more trouble mamglam!  Radiation is enough of an insult to our skin no need to add injury too.

    For those of you just getting started:  hang on it goes fast and if you get as tired as some of us have, you'll sleep walk thru the second half.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Anyone use Vit E oil (from the capsules) on sore nipple?  My RO said it was the best.

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2012

    I have a bottle of vitamin E oil -- I will try that tonight --

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