May 2010 Rads Group

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited July 2010

    diane and rocket- thanks!  I think I will go ahead a make some time for PT.  3 of the kids go back to school Aug 9 and my daughter goes to preschool after Labor Day.  I have always loved summer with everyone home but this year I am actually looking forward to school starting again.  I have been working very hard at being 100% back to normal..... I am so darn tired though.  I can't pretend anymore!  Come early evening I am barely awake.  Last night one of my boys said "you're always tired".  Ouch.  Can't be helped though.  They are too young to really understand. 

    Rocket, the sticker area is where I had so much more break-down too.  I was glad to be numb when I saw what it looked like!

    Hope everyone has a good Tuesday!

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  • Rocket
    Rocket Member Posts: 1,197
    edited July 2010
    Hi mom3band1g - I understand the exhaustion.  The final two weeks of rads was really difficult with the fatigue.  I am just starting to feel a little better now and it's been over a week since my last treatment.  I hear the fatigue can last for some time.  It seems to come on all at once for me.  I'll be going along just fine and then BAM, out of the blue I feel completely exhausted.  I've been trying to get some stretching and exercise in the evenings, but it sure is difficult when I'm so tired.  I can't imagine having three kids to care for as well.  I do work a lot of hours at my job, but I love coming home and crashing after a long day at the office.  I'm off today and trying to get up my courage to go out without my wig.  My hair is not quite an inch long yet.  I'm such an introvert and don't know if I can do this or not.  I thought I might go to the small pharmacy near my home first and get some pomade for my hair so I can spike it a little on top.  I don't want people staring at me though.  It's bad enough having to wear the compression garment on my arm.  Well I think I need to adopt a confident attitude and accept that it is what it is.  I'll wear big earrings and maybe that will distract people from the fact that I have very little hair.  Cool
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  • KittyDog
    KittyDog Member Posts: 1,079
    edited July 2010

    Rocket.  go for it.  I was verys self consious the first day I went with out my hat but now I don't even care what people think.  It is just to darn hot to wear hats and wigs here.

    My faitgue started letting this weekend.  That was two weeks since my last treatment.  Today I woke up to an itchy rash on my new pink skin.  If not better tomorrow I will call them back to see what is going on.  I am almost heal finally to.  I have about a four inch long area about one inch wide that is still weeping some.  

    Glad everybody is healing and doing so well.  

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  • Rocket
    Rocket Member Posts: 1,197
    edited July 2010

    Hi KittyDog,

    Thanks for the encouragement.  I went to the pharmacy and bought some stuff called Hair Putty.  I spiked my hair with a little of it in the car and then decided to drive to Sam's Club to get some grapes.  I was extremely self-conscious as soon as I got out of my Jeep.  Several men looked at me funny.  I just lifted my chin and kept walking into the store.  I acted a whole lot more self-confident than I was, but at least I did it and I was proud of myself too.  I then went to my church to pick up my mom who was helping out for a summer camp.  I hadn't been to church without my wig, so I was a bit concerned that people would be shocked.  Everyone was so kind.  I got several comments about how I looked like Demi Moore (yeah right - in my dreams), but it did encourage me.  Maybe now I will ditch the wig permanently and get used to the spiked look.

     I also wore my prosthetic breasts today for the first time since rads ended.  My skin is doing pretty well.  I had three blisters, but all have finally healed up.  I still have some very dry skin along the boost area, but it's getting much better.  I'm glad you are healing well too.  I hope the rash is nothing to be concerned about.  Maybe it's due to the heat.  I can't believe the summer we are having in NC.  I'm sure SC is even worse.  Hang in there and stay in touch!

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  • Trytostaypositive
    Trytostaypositive Member Posts: 35
    edited July 2010

    Hello Ladies,

    I need advice about creams. What have you found most helpful to use on irradiated breast. I had mastectomy and tissue expander placed 1/10 and radiation about 4/10. I am using now Biafine, but it is with prescription only.

    I am looking for a nice, nongreasy cream which is over the counter.  I did not like Aquafor at all, it was so greasy.

    Thank you,

    Donna

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited July 2010

    I used xclaire which I got from my rads onc.  HTH!

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  • Rocket
    Rocket Member Posts: 1,197
    edited July 2010

    Hi Donna,

    I used Udderly Smooth which I purchased at Walmart.  It was suggested by my rad onc.  It is very non-greasy and has few ingredients.  I bought a large container of it.  I also disliked the Aquaphor.  I'm sure they have told you not to use anything before your treatment sessions.  I would take a small bag with me to my treatments to carry my cream and deodorant and apply them in the dressing room as soon as my treatment was finished each day. I slathered on a large amount of the cream and it worked quite well.  I used Toms of Maine deodorant which does nothing to keep you dry, but is simply a deodorant and not an antiperspirant which should be avoided during radiation.  I hope all goes well for you.

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  • Luah
    Luah Member Posts: 1,541
    edited July 2010

    I used Glaxol base cream.  Thick, creamy, not greasy at all.  Never had any peeling, or skin breaking open with it. The rad onc and all the rad nurses recommended it - not sure if available in U.S.?

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited August 2010

    Just checking in to see how everyone's doing...

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited August 2010

    Hi Cafelovr - Hope you are doing well. If I could just get rid of this arm pain from LE I would feel pretty good. Some days are better than others with the arm. I am also still having pain/numbness in my feet. Chemo done the end of April, I am beginning to wonder if the feet will ever be the same. Sometimes this really limits what I do. Anybody else have this, and if so, what are you finding is helping? Other than that - all else is fine. Going for another Herceptin tomorrow at U of M. Hope everyone is busy enjoying this hot summer weather!

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited August 2010

    I don't have LE, but I have pain from my elbow down to my wrist on the underside of my arm. I tend to think it's cording. It eventually goes away, but if I do too much, it hurts. I do my Herceptin tomorrow.

    My last chemo was March 24. Gradually my neuropathy went away. Every now and then my fingers tingle, but that's it. Feet are good! Did the dr suggest anything for it?

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited August 2010

    I am finally over the fatigue that rads put me back in.  My skin looks good but I still have one small scab.  I see the rads Dr. again tomorrow.  I think I figured out what was causing my nice new skin allergy.   It is either the elastic in the bra or the detergent didn't get washed out good.  Trying a new detergent this week.

    I have a bad case of neuropathy.  I am currently taking 150 mg. of Lyrica and 100mb of vitamin B6 for it.  It is only my second week on Lyrica but the pain in my fingers is already better.  Not much difference in my feet and legs yet.  I and my insurance nurse thinks mine will not go away since I have such a bad case of it.  The only improvement i have gotten is that it is no longer in my mouth and the tops of my thighs have calmed down.  The muscle weakness has also improved but I am not back completely.  I still loose my balance and stumble when walking.

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  • Rocket
    Rocket Member Posts: 1,197
    edited August 2010

    Hi All,

    I'm still struggling with LE in my right arm and continue to have the tingling in my right hand and fingers.  It's driving me crazy.  I am doing better since my skin has healed up from the rads.  I'm finally wearing the foobs again and feel more like a woman.  The hair is another story - about an inch long and ridiculously curly.

    Had a nice mini vacation last week to get away before my total hysterectomy next Wednesday (8/11).  I'm scared and dreading it. 

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited August 2010
    Rocket - If you find any magic dust out there to help with arm LE let me know. I do manual massage every day without fail. I wonder if mine is acting up because it is so darn hot and humid right now. I will be thinking good thoughts for you next Wednesday. Wink
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  • Rocket
    Rocket Member Posts: 1,197
    edited August 2010

    Thanks Leslie.  I wear the compression sleeve every day.  It's miserable and hot, but I believe that it helps.  I also have LE in my chest.  I wear a compression vest at night.  I look a lot less swollen in the morning.  I have also been eating a low salt diet.  I haven't come across any magic dust though.  I do think the heat has something to do with it as well.  Our AC was broken at work today, and I thought I would melt!  I live in NC and it's way too hot and humid.  Thanks for the encouraging words.  I appreciate it!

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited August 2010

    I can't remember if anyone else had rads with TE's in place?  This week that side is getting so tight and I am getting a strange 'dimple' on the muscle between the TE and my shoulder.  Not sure what this is but it's uncomfortable and I don't want anything to happen to my reconstriction plans.  I called my ps and will see him in 2 weeks.  They referred me to a massage therapis, but the massage person is booked until mid-September.  That's not going to help me at all.  I find myself very weepy these days.  I almost cried on the phone when I couldn't get an appt.  ugh.

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  • Rocket
    Rocket Member Posts: 1,197
    edited August 2010

    mom3and1g, I'm so sorry you couldn't get an appointment sooner.  I didn't have TEs, but I do know that I have developed fibrotic tissue along the scar area where they gave me the boost treatments.  It scared me at first because it feels like a thickened area and I thought, "Oh no, it's back!"  I nearly freaked out.  My PT said she will do massage in that area to help break up the fibrosis.  I'm not sure whether or not this may be what you are experiencing, but I'm sure there must be someone on here that can help you who has had TEs and rads.  Did you try searching the discussion boards for that topic?

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited August 2010

    rocket, thanks for responding.  I ended up getting an appt with a PT person for Monday.  I am thinking you are right and just a little massage and/or stretching will help. 

    Hope everyone else is doing well and their energy is returning.

    k

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  • Rocket
    Rocket Member Posts: 1,197
    edited August 2010

    mom3band1g, I'm really glad you got an appointment.  I hope the massage will help.

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  • Rocket
    Rocket Member Posts: 1,197
    edited August 2010

    mom3band1g, I'm really glad you got an appointment.  I hope the massage will help.

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  • Everett78
    Everett78 Member Posts: 87
    edited September 2010

    mom3band1g, How are you doing?  I also had rads with TE's.  So far things have been fine, with just tightness on the rads side.

    I'm supposed to have my exchange surgery in December.

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited September 2010

    Just happened to see this!  Physically I am doing really well, thanks for checking on me.  My TE's have remained very soft.  I am still getting quite a bit of tightness on that side though.  I have been going to PT once a week and that is helping.  The PT told me I would feel the effects of rads for up to 6 months!!  I am supposed to have my exchange in Nov.  I go to the ps in Sept and we will look at dates then.  I cannot wait.  Everett78- glad your TE's are  holding up as well.

    Anyone else having trouble with their head? 

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