SEPTEMBER 2008 rads group

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  • redheadace1
    redheadace1 Member Posts: 212
    edited October 2008

    I'm sorry that you all are having such a hard time with burning. I'm not sure why I didn't--I'm a fair-skinned redhead. But I do notice that now I am done with rads I'm having weird, shooting pains in my breast at random times. It's disconcerting, to say the least. 

     Hope everyone has a great week this week

    Ace 

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  • nancy258
    nancy258 Member Posts: 162
    edited October 2008

    NancyD, since I'll be finishing tomorrow, Tuesday 28th with Kim, make that two margaritas on the rocks!

    I agree with you NancyD, the xeroform worked really well for me too.  My raw spot under my breast dried out in 5 days.  It's still a little pink, but looking much better.  Everyone raves about the Silvadene also.  One of those will help clear up those sore raw spots in about a week.  Just get in front of it.  Don't wait til it gets real bad before you show it to your rad onc.  I think it has more to do with friction spots than with an actual burn because of light skin, so if you can avoid the friction of skin on skin, you might get by like Ace did.

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2008

    OK, this one is for Makraz! Bottom's up!

    That looks yummy! 

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  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Anyone get nauseous from rads, or am I just having a bad day?  Any other day, that drink really would look good....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Hi ladies,

    I need to vent - and get some insight from you please.

    Can someone fill me in on tamoxifen - oncolog. just called - infact I've had two calls since this am. First they wanted me to come in. I told them my mom was sick and I was caring for her and couldn't right away. Then I get another call from nurse I think and said that I should start it now. I told her I would come in and discuss it with the dr. but that I probably wouldn't be taking it - too many side effects. Why can't they take no for an answer? What are you ladies doing?

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  • shari1232
    shari1232 Member Posts: 161
    edited October 2008

    Because the statistics point to a significant positive (good) impact from Tamoxifen in reducing recurrance, I will be starting once rads are done.

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited October 2008

    Shaari1232  - Yes, I was living on iced tea and diet coke.  I don't know if if was stress...!  I lost 20 lbs!

    Ace1 - That may be your frazzled boob nerves trying to figure out what the h*ll just happened to them!!   I'm over a month out and I rarily have them at this point.

    Susan

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  • Makratz
    Makratz Member Posts: 12,678
    edited October 2008

    I'M FINISHED!!!!!Smile

    Thank Nancy for that nice big mudslide!!!   My parents came over after my last boost and brought me a nice bottle of Baileys so.......I should make mudslides!!!

    It feels good to be done.  I'm not sure what I will do tomorrow at 9:50 when I'm supposed to be zapped, but I'm sure I'll figure something out.

    Rose47, I started Tamox this past Friday night.  I've taken 4 so far.  I will take them so I can further reduce my risk of recurrence.  I am 42 and NEVER want to deal with this again!!

    Ace1 - I get the same thing from time to time.  Hopefully it will end soon.

    Thanks so much for all the help and advice for each and every one of you!  I will continue to post here and also on the new 'about to start' thread.  Hang in there everyone else, your time will come!

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited October 2008

    Makraz -

    Woo Hoo to you!!!  We'll raise our cyber glasses and drink to your great news!!  One more step closer to owning your life again,

    Susan

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    Conbrats Makraz!

     First boost today- 4 to go, peeling and new pink skin under the arm and on neck- SO sore! They told me to continue aquaphor and my toga robe style at home to keep it exposed to air.

    Anyone else have itching? There are times during the day when I could scratch my skin off- I dont because it know it is to fragile so I put ice on it- but still.....itching like crazy!

    Everyone says I can proceed to surgery if my white blood cells have recovered- rad onc said wait a week and then said- honestly, I would wait 2-3 weeks at least and let your body recover. I was leaning toward 3-5 weeks so I appreciated his honesty!

    Kristy 

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  • janloy
    janloy Member Posts: 113
    edited October 2008

    Kristy: Ice? Is that okay to do? I was told no ice/no heat.

    Sorry I have been so absent but I am celebrating so many of you finishing. I'm literally toasting to you as I type this. Couldn't drink during chemo. Still not drinking much but this wine is going down quite nicely this evening.

    Shari: I'm nauseous many days and from what I understand, that can happen. Unfortunately, it isn't making me lose any weight. Oh well, this too shall pass. Depressed but I'll get through it.

    I have 9 days left, the last seven of which will be boosts. I would not have even known about boosts if it wasn't for you ladies.

    Still on Herceptin every three week but no hormones.

    Love and prayers to all,

    Jane

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Yes, KristyAnn - I have a spot that itches all the time. What do you put on it? I've tried most everything.

    The side effects just are too scary for me. Have you read what they are? Quality of life is more important to me - even if it is short. Thank God - it was caught early and it was very tiny.

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  • vhqh
    vhqh Member Posts: 535
    edited October 2008

    Rose - I have been on tamoxifen since February of this year.  I have had minimal side effects.  If you are basing your decision based on negative side effects others of us have reported, be aware that we talk about what goes wrong, rarely do we talk about what goes right.  I had hot flashes at first but they had faded away less than 4 months later.  The risk of uterine cancer is actually rare.  I would suggest you consider giving it a try to see how you get along with it before writing it off as not worth it. 

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  • Makratz
    Makratz Member Posts: 12,678
    edited October 2008

    Kristy and Rose47,

    Midway through my rads I started to itch like crazy!!!!  My doctor told me to use hydrocortozone cream which I did and it did help.  I also used chilled aloe gel.  I had to apply it often but swore it helped.  Good luck to you both!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    They didnt tell me no ice- but I didnt ask either. I havent been using it much- put some in a walmart bag today at work and laid it on my shirt for a few minutes- was driving me absolutely crazy itching!

    i have some anti-itch cream, a generic from Walmart and it seems to help- I dont put it on the peeling part though.

    I would be fine if I could wear a toga and let the whole left side hang out in the air! (What a sight though!)

    Kristy 

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  • roberta37
    roberta37 Member Posts: 371
    edited October 2008

    Congrads Makraz on being done.  Four more left for me.

    Today saw the nurse who went over saline soaks with me.  Have to do that 2 times a day which isn't so bad and then do the cream and cover the part that is weeping (which is under the arm).  Right now it isn't so bad pain wise and hopefully it will stay that way.

    Jane - hang in there those 9 days will go by quick.  I can't believe that I'm already at 24 of 28.

    Kristy - I'm glad you leaning towards a few more weeks and giving your body a break.  I just started itching today and it does drive you crazy.

    Well hope everyone has a great week.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    Roberta,

    How do you do the saline wraps? That sounds soothing- Im sitting here now with a wet paper towel on the peeling areas, alternating with air trying to make it tolerable until bedtime.

    Kristy 

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  • redheadace1
    redheadace1 Member Posts: 212
    edited October 2008

    Congratulations, Makraz! How does it feel? That drink of yours sure looks yummy!

     Rose--Good luck with the Tamoxifen decision. I'm right there with you. My doc said he wouldn't push it, but I'll probably take it anyway. I just heard from one of my college profs and he said he's known several people who had to take it and they did fine. And I've been hearing that from other women on the boards. It's a tough decision. Maybe you could just do a trial run and see how you do. I think that's what I'll end up doing. You might want to check out the feedback I got on my DCIS thread, "Skip Tamoxifen?."

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  • KAK
    KAK Member Posts: 1,679
    edited October 2008

    Rose, here's a link on tamoxifen, the complete story:

    http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

    The risk of it causing uterine or endometrial cancer is about 1 in 1000, or a 1/10 of 1% risk.  The risk of increased blood clots is similar.  My risk for getting breast cancer again if I do nothing else now is about 15-20%.  Taking tamoxifen will cut that in half.  Clearly taking tamoxifen for me is less risky than not.  Good luck, though, and stay with us on the About-To-Start-Hormone thread & others for more info.  I start today.

    Yay, Makraz!!  Nancy, that frozen mudslide looks awesome.  Makraz, if you're ever on Block Island, I can highly recommend the frozen mudslides at the National Hotel.  Also, I make a mean one myself! 

    Roberta, almost done!!  Hang in there, everybody!

    Kathi

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  • roberta37
    roberta37 Member Posts: 371
    edited October 2008

    Kristy,

    Dissolve 1.5-2 tsp. salt in 1 liter of boiling water.  Let cool to room temperature.  Place gauze or clean face cloth in some saline solution and place over involved are for 10-15 minutes.  Re-moisten if required.  After that I'm suppose to pat the area dry and then apply the cream my doctor has prescribed.

    The saline compresses are suppose to clean and soothe the skin and can reduce inflammation.  I've only done it once so far and it did help. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    You all are so sweet! I want to cry!

    It is a very tough decision - I don't want to try it and then have side effects that won't go away. I will check out the links you have posted. I wouldn't have to worry about uterine cancer because I had a hysterectomy about 10 yrs. ago when I had OVC - early stage (thank goodness) I had a hyster. and chemo. I was fine until this BC came up because of high estrogen. My diet was terrible, never exercised and stress is horrible.

    Thanks for all the information you share. Love you all!

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  • dancemom23
    dancemom23 Member Posts: 56
    edited October 2008

    #24 today - only four more regular, and five boosts to go!

    Yesterday I had a late afternoon appointment and for the first time since I started, the waiting room was completely full.  Usually when I get there for a 4:00 appt, they are waiting for me, so I knew there had to be some sort of a problem.  Apparently some part of the machine wasn't working right, so it was taking every one a bit longer to set up, and by the end of the day they were far behind.  Up until yesterday, the longest wait I had was about 20 minutes, I ended up having to wait about an hour and a half.  Today I was at 7:45, so even thought the machine was still not working properly, no delay because they hadn't had a chance to get backed up yet.

    They handed me a card yesterday for an appointment tomorrow for a CT scan to sim for my boosts - I wasn't really expecting that, but I guess it makes sense.

    The mudslide looks great - that's my favorite drink for girls weekends (when my daughters have their dance competitions, the moms have to have fun too - right?)!

    Kristy - I was also told no ice/no heat - at my very first appointment they handed me a list of dos and don'ts and that was on there, they never actually told me that though.  I worry about my shower being too hot - I like a HOT shower, and since it is starting to get pretty cold here, I need that hot shower even more, I just try to keep it up when my back is to the shower and turn it down when I turn around.

    I also have an itchy spot right at the top of the entire area - I was also told to use OTC hydrocortizone cream.  She said if it got worse I should let them know and they would prescribe something stronger.  So far I am still just using the aquaphor and the generic hydrocortizone cream.  I don't really have any blisters yet, just a few "bumps" are starting to show up. 

    I just put my prescription for Tamoxifen in the mail so that I have it for when I am done.

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  • KAK
    KAK Member Posts: 1,679
    edited October 2008

    You know, they said no ice/no heat in the rads booklet, but when the nurse talked to me about skin care, she was very thorough & never said anything about either.  It makes sense to me that you shouldn't use a hot pack/heating pad, but I think a shower is different & as long as it feels good & you're not irritating the skin, I think that's okay.  Showering felt really good to me, too, when my skin was itchy & I like a hot shower & never had a problem with that.

    I did use a soft-gel coldpack occasionally.  Maybe I wasn't supposed to but it never did any harm & sometimes it was the only thing that took the sting out of the burning & made my armpit swelling decrease.  I figured using the gel pack was okay because it's soft (mine is covered with felt on one side) & not quite as cold as regular ice so it wouldn't cause any stinging numbness.  It really was fine & my skin never blistered & it helped me get to sleep at night during the worst of the SE's.  I'm a PT so I guess I wasn't afraid to be maybe a "naughty" patient & I trusted my own judgment.

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  • nancy258
    nancy258 Member Posts: 162
    edited October 2008

    Makraz, CONGRATULATIONS!!!  Celebrate girl!

    I'll be going for my last boost in about an hour.  I saw the rad onc for my last in treatment visit yesterday.  She said I could resume multi-vitamins as soon as I'm done treatment.  Continue with the moisturizer cream indefinitely and don't shave or use regular deororant for about two weeks, until I'm no longer pink.  Actually on the shaving she was encouraging me not to be to anxious to do that and use electric razor if I had to.  My husband said I'll have to braid or dreadlock that hair under my arm if I don't shave it soon.  Ha!  What about the steroid cream?  Does anybody know how long you are suppose to continue that?  I think she said a week, but I can't remember.  I won't see her again for a month.  Wow.  I won't know what to do with myself and all the extra time I should have.  Well, yeah actually I will -- get on with life!

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  • pattyk
    pattyk Member Posts: 25
    edited October 2008

    Nancy,

     sorry to hear about your burns.  I went through the same thing.  Nothing really helped until the doc prescribed Sulfur Silvadene.  It's like a miracle.  I put it on twice a day and put a non stick gauze over it and in three days a huge amount of healing, and relief, happened. I'm not sure why they waited ( I didn't get the prescription until I was having boosts), but it really does the job.  Since I graduated already this will be my last post.  Good thoughts and many prayers to all still being treated with the rads.  On to Arimidex!

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2008

    OK Kpete and Nancy258...I have a coupe of margaritas on the rocks for you.

    Want some salsa and chips with those? 

    Enjoy! And congratulations!!! 

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  • Makratz
    Makratz Member Posts: 12,678
    edited October 2008

    Congrats Nancy258!!!  You must be so excited.  I'm sure you'll find something to do with your extra time!  Will you be doing the Tamox dance??

    Congradulations again!  Enjoy your margarita's!

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  • Kpete
    Kpete Member Posts: 10
    edited October 2008

    NancyD

    Those look great, along with the chips and salsa, thanks so much!!!  As soon as I leave work, I think instead of just looking at the ones you made, I'll be drinking a couple!  Yeah - can't believe they're over, although the 6 1/2 weeks actually went fairly fast!  Didn't get to see the rad onc today as he was in surgery, but I'll call him this pm.  Didn't have too many questions - because most of the questions I've had, I got answers right here on the board.  I have really enjoyed seeing what everyone has to say regarding SE's, etc.  You have to be going thru the same stuff sometime to understand it all.  And I'll keep in touch on the Hormone Therapy thread.

    Congrats to Nancy258 for finishing also!  Enjoy the extra time - I know I will.

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  • nancy258
    nancy258 Member Posts: 162
    edited October 2008

    Wow, done, 36 treatments down.  It really did go by fast.  I just noticed my boost area is pinking up.  I can see the exact outline of the boost piece they put in the machine.  After 8 boosts, this is the first day I've seen the pink.  Guess I'll have a sore nipple for a week or so. 

    Kpete, thanks and congratulation to you too!!!  Pass me a chip, will ya?

    NancyD, thanks!!!  It really is the best margarita I've every had!

    Makraz, yes I'll be joining you on the Tamoxi-train over on the Hormone Therapy Board.  I won't start for about three weeks.  That's when I have my appointment with the onc.  I guess he'll give me the prescription then. 

    This Saturday I'm leaving for a week in Costa Rica.  Just happened to be planned 8 months ago, but boy the timing could not be better.  So I'll disappear for a little while at the end of this week, but I'll be back to cheer the rest of you on.

    You've been the best group of ladies to hang out with through all this, thanks so much. 

    .   

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    Congratulations ladies- and Nancy served up the best chips and salsa- the food that got me through chemo!

    3 to go for me. My doc doesnt prescribe Silvadene- sure wish I had something for these two spots. They really are doing well but boy do they get sore during the day at work!

    Kristy 

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