SEPTEMBER 2008 rads group

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

    Hi All,

    Just checking in.  I had 22 today and spoke to the rad onc after.  When I inhale I've noticed a dull pain.  He thinks it's because a part of my lung is being radiated and told me it's inflammed.  I can taken motrin to help with the inflamation.  It's not a bad pain but I thought I should mention it to the Dr.  Any one else have this?

    Embmom - hang in there, your hair will grow back.  Have a great weekend in FLA and forget about everything else!

    NancyD - are you doing hormone therapy as well or are you completely done?  I hope you do something special to celebrate too!

    Hang in there everyone else.  We're almost done.  Then I will see you at the Tamox thread!  I'm nervous about starting that.  I won't until I'm done with rads.

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

    Embmom - thanks for the thoughts. My hair isn't doing so well either, and I have chalked it up to too much too soon: Losing it once, having it start to grow back in ernest, and then losing it again, and now I'm on Arimidex. I kept thinking I would have hair by Halloween, but now I've rescheduled it to Thanksgiving.

    Makraz - yes I'm on Arimidex...and THAT may be the problem with my hair regrowth. Although my onc said he didn't have any patients whose hair was effected by it, I have heard on these boards that it can cause thinning, so it's a natural assumption that it may make the regrowth come in thin, too. No other s/e's to complain about. Hot flashes—I've been living with these for years now, so they're not new, just a little more frequent.

    princess - I've been fighting a cold for about two weeks. I thought they might reschedule my treatments because of it, but nope. It's at the point now where it's moving from my head into my chest. There are some things going around that I would like to avoid...I heard a woman on my commuter bus this morning that was hacking away every minute. I felt like telling her to stay home, and definitely stay away from me! If she had sat next to me, I would have moved, no matter how rude that would have appeared.

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  • nancy258
    nancy258 Member Posts: 162
    edited October 2008

    I had to miss my #21 treatment Monday because the radiation machine was broken.  I got the CT scan to set up my boosts and saw the doctor, but now that puts my scheduled end date back another day!  Ugh!  So, the machine was working today and I got #21,  I now have 7 more regular to go then 8 boosts.

    Congrats NancyD!  It must be a great feeling to have the rads completely behind you!  Enjoy!

    Makraz, the rad onc told me 1cm of my lung was being radiated, but I haven't felt anything, and she said it will not affect my breathing even when exerting.  Did you dr say how much of your lung is being radiated?

    Embmom, sorry about your frustration.  Get it out, then let it go.  Works of art can't be rushed.  You're probably going to have the most beautiful mane of hair once it comes it in :)

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

    Hi Nancy258,

    He did say it was a very small amount of my lung but did not use measurements.  Like I said, it's not really that bothersome, but I wanted to bring it up incase something was wrong.  It kind of feels like a sore muscle.

     I don't know if you have the flexibility or not, but when my machine was down one morning, I called later in the day and went in for my rads then.  I just didn't want to add another day onto the end.  I was glad I was able to.

    I only have 3 more reg rads to go and then 10 boosts.  I thought we finished the same time but it seems like you are having 28 reg rads and I'm having 25, then the boosts.

    Hang in there!

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  • embmom
    embmom Member Posts: 115
    edited October 2008

    Thanks for all the encouragement--what a whiner I am!  I just finished reading about Annie's situation over on the TripNeg board--now that's something to cry about.  Anyway, I'll quit worrying about my stupid hair and direct all my energy to sending good thoughts to those of you who are trying to fight this crappy disease-- only to have it pop up somewhere else.   Embmom.

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  • nancy258
    nancy258 Member Posts: 162
    edited October 2008

    Yes, Makraz, I begged and pleaded to come when the machine was fixed as I work 7 minutes away.  They said they were completely booked and would call if they could squeeze me in, but I never heard from them.  I really didn't want to add a day.  They said there is the possiblility they could give me two in one day, one early morning and one late afternoon, but it sounded like they only will do this if absolutely necessary.

    PrincessS, getting close!

    Anyone starting the boosts, does it get red and sore in the boost area?  How bad?

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  • Kpete
    Kpete Member Posts: 10
    edited October 2008

    Just had my 18th of 33 today.  My chest is getting very itchy, and broken out.  I didn't even think about putting cream over this area - I was pretty religious about putting something (Aloe or Aquafor) on my breast, but only started putting something on my chest in the past week or so.  I don't have much redness, only my beautiful rash.  Hope it doesn't get much worse as the days go on.  I'm not having much if any fatigue.  I think some of it is due to the days getting longer (or at least it being dark more).   

     Congrats to all of you who have finished your rads.  YEAH!  I go see my onc next week, and will find out the "plan" after rads.  I know I will take some kind of hormone therapy but not sure what.

     It's almost hump day!  Have a good rest of the week!  I'm going to my daughters sorority initiation this weekend at Kansas State Univ.  Meeting my sister up there for a fun weekend.  I can't wait.  Prayers, Kim

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    Im here and doing ok- had number 15 today so on Thursday I will officially be on the second half of rads. I will be on hormonal treatment after rads but not until I have my ovaries out- then Arimidex I think. I dont metabolize tamoxifen so that is not an option.

    One little itchy spot- not sure if it is rads or sweat close to the little stickers they have on me! Trying aquaphor on it tonight.

     Definitely more tired than usual and busier than ever at the job- my company was bought out in June and we are swamped by integration activities!

    Kristy

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  • sharpie
    sharpie Member Posts: 13
    edited October 2008

    Hi, ladies. I had #20  today. The center had a Terrific Tuesday where they offered free massages, manicures and haircuts. I stayed and had the massage and manicure. Three weeks ago all I wanted to  do  was get out of there after treatment. Today I felt so special. Plus I got to meet other patients. Earlier tonight, one of my friends brought me a Susan Komen pillow. It's been a very special day and I feel like God knew I would need this because I just found the itchy spots have begun to blister. This was something that made me cry  just to think about it. Every time  i  would read about it or the nurse would talk about it,I would start to break down. But  now that it's happening, I feel  I can make it.

    Lisa

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  • Jeano77
    Jeano77 Member Posts: 237
    edited October 2008

    Hello Ladies!  I have been somewhat absent taking my available free time to research IMRT.  I am through treatment #5 today and finally met with my rad onc to discuss my plan. He stated that they have been doing this at the Mayo Clinic since 2004 and I do appear to be a good candidate. 

    Jane - Thanks for the note on that.  I found it interesting that it was a clinical trial in MI, yet not considered that here in MN.  Maybe the rad onc was blowing smoke my way about Mayo Clinic.  Also concerning, there is no breathing machine / snorkel mask used in my treatment . . . but I now plan on asking, thank you! 

    Deb - I also appreciate you adding a note on your research findings.  It is a bit scary being the only one on the board (as it appears) that is doing IMRT. 

    Because of the change to my plan, I actually started rads on 10/1.  I plan to hang out here with you all if you don't mind, your a wealth of information. 

    Jean

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  • dancemom23
    dancemom23 Member Posts: 56
    edited October 2008

    #9 today - double digits tomorrow - yeah!  Still just barely a little pink but feeling heavy and tender. 

    This weekend my son had a baseball tournament and Sunday I sat through 3 games.  The first game was cold and damp - by the end of the 3rd game it was sunny and warm.  So sunny and warm that I have a very sunburned face - at least it is a brighter red than my boob, but I have sunglass marks.

    Lisa - Massages, manicures and haircuts - interesting, glad it made you feel special.  Meeting other patients would be nice too.  I really don't get to see too many people when I am there for rads, usually just the lady who is going in when I am coming out. 

    Kristy  - I am feeling extremely tired too and don't know if it is due to rads or my job.  I'm on the other end of you, though.  My company recently acquired another and as a result my department is growing so last Friday we had to move to a new office (I'm still unpacking) and ended an integration implementation project with go live on our system Oct 1.

    Congrats to those who are finished or are on the home stretch.

    Chris

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  • tkone
    tkone Member Posts: 511
    edited October 2008

    Sounds like many of us are doing treatment while the business world marches on.  I work for WaMu and we were bought by JPMorgan Chase 2 weeks ago.  Instead of making me busy, it is just causing me stress right now-not knowing if I will have a job or not.  Fortunately my medical insurance is through my husband's company, so we will just keep going with that.  Treatment number 7 today and still nothing to report which I am grateful for.  No pinkness, no itchiness, no fatigue.  In fact, my energy is way up.  Maybe just in comparison to chemo.  Hope there will still be somebody left when I finish in November!  I should be done November 12th.  28 regular and 5 boosts.

    Thinking of everyone and hoping you are doing great.

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  • princessS
    princessS Member Posts: 45
    edited October 2008

    Well, I missed yesterday's appt. due to this flu thing I have.  I had chills, fever, achiness, and sore throat.  I was in no condition to be there.  So tack one on in the end for me!  No big deal, since I'm dreading the end anyway.

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

    Ladies, I'M BACK IN TREATMENT!  Got a whole three days off.

    The story is the rad onc decided I needed boosts, but hadn't told the techs. So we all went on our merry way on Monday thinking it was my last treatment. I even had a discharge meeting with the nurses. I got a call yesterday while I was at work, which I returned this morning, informing me I needed to come back for five boosts starting tomorrow.

    Wah! It's enough to make you cry. 

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  • dancemom23
    dancemom23 Member Posts: 56
    edited October 2008

    Wow, NancyD - that stinks - I can't believe you have to go back!  At least it is only 5 more.  Look at it this way - you get to celebrate being done again!  (I know that is lame but trying to find the positive is rough.)

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  • princessS
    princessS Member Posts: 45
    edited October 2008

    Nancy D-I can't believe that was overlooked!!  What a mental game that must be for you.  You are still ahead of me by a few days!

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited October 2008

    Ah Geez NancyD - that's awful - thinking you are done and then - BOOM - you get boosts.   They aren't so bad really - I've had 5 now - 2 left and I'm through.   I don't notice any real reddening in the area - more so than before - but I do notice more stiffness under my arm and soreness in my arm - keep doing my exercises to help loosen things up.    Have you noticed throughout this that you had to really keep your arm stretched out - loosened up - you know - just like with the mastectomy?   I'm really watching out for lymphadema - I think that scares me more than anything.   Hang in there!!    They do the boosts for a reason.

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  • embmom
    embmom Member Posts: 115
    edited October 2008

    Nancy--I did the first of my 5 boosts today--I wondered how you got out of them--anyway they took all of 27 seconds--I counted--I didn't even have to take my shirt all the way off.  I wish they could just zap me for 125 seconds and be done with it.  Getting up at 6:30 in the morning to be over there for 30 seconds is tough...but it'll all be over before we know it!!! Yeh!!! Embmom

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited October 2008

    Jean 077,

     I finished my IMRT a month ago in upstate NY - 14 treatments in 3 weeks. It was recommended mainly because my cancer was in my left breast, close to the heart/lung area. I have had no side effects, other than fatigue, but my skin has been fine, not even much of a suntan.  And, I'm Irish/German and burn like crazy! 

     I'm so thankful that I made the 3-and-half-hour round trip each day, because my rads onco and breast surgeon were right on when they told me very minimal SEs with IMRT. 

    I'm 61 and teach kindergarten, so my fatigue was probably as much from my job as the  treatment!!

    Susan

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

    NancyD - my goodness I would WAH too!  I can't believe that was overlooked either. My 5 boosts start Friday.

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  • vhqh
    vhqh Member Posts: 535
    edited October 2008

    That really sucks!  I still wander if they didn't sneak a heavier dose in on me after cancelling the boosts, the machine ran longer and my skin took a nose dive, both in redness and ouchieness.  They brushed it off as being affected by the air pressure etc. from the weather change.

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

    NancyD - I'm so sorry to hear that.  It sounds like you will have a lot of company with your boosts as several others are starting around the same time.  I will start mine on Tuesday due to the Holiday.  Good luck and hang in there!  Be sure to keep me informed on how the boosts are going.  I'm nervous!

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

    Well, at least I'm going to be able to do them during my lunch hour.

    This is really a busy time for me. One of my designers just left for 10 days vacation and I've got to cover his jobs...and wouldn't you know it, he left so much undone it's going to double my workload. I may even work over the weekend! And of course, my boss did not approve my request for extra help while he's gone. Ack! She just doesn't GET IT.

    So far, I'm not feeling very fatigued, so that's good. But I am having a strong skin reaction at the center of my chest and under my arm which is starting to move into the painful range.

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  • roberta37
    roberta37 Member Posts: 371
    edited October 2008

    Wow NancyD someone dropped the ball on that one.  Nobody said anything to me about boosts so I'll make sure I ask next doctors appointment.

    12 down and 16 more to go.  Will be nice to have the 3 day break this weekend.  So far don't look to red and tiredness is manageable.  I'm glad I'm only doing a half day though as I don't think I could do more and have enough energy left over to take care of what I have to at home.   

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  • janloy
    janloy Member Posts: 113
    edited October 2008

    Hi Everyone:

    I've been a little absent since I actually started radiation. Zap #10 today. So far, so good.

    VHQH: So sorry to hear your prognosis. I will say special prayers for you. Thanks too for being courageous enough to share insight for the rest of us. I'm on Herceptin and will definitely take your advice.

    Roberta: My last chemo was July 29th. I have some hair stubble albeit gray (it didn't fall out that way). At the end of last month, my brows and lashes started to come back. The brows should be filled in but I'm not going there. The lashes are not long enough to curl or put mascara on plus, my beautician said those things could hurt the delicate lashes right now anyway. So I remain fat, bald and boobless! Oh well, this too shall pass.

    Congrats to all that have finished. Thoughts and prayers with all of you.

    Jane

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

    Hi, all.  vhqh, how are you?

    Ace, are you done???  Oh, Nancy, I can't believe you have to have boosts.....

    Three days post-done & I'm a bit rashy & red & a bit weepy around the rash dots.  The rashy stuff is I guess more of this folliculitis that my radiation nurse warned me about, so I've been daubing Silvadene on it so it won't get infected.  Silvadene is great stuff for the open areas & it kills, like, every germ in the known universe, so ask for some if you haven't been given any.  I don't feel too bad yet, just itchy sometimes.  I was expecting the worst because I'm fair-skinned & have had some doozy sunburns in my life with 2nd-degree burns & sun poisoning & the whole bit.  That's one of the reasons I really wanted to do this 3-week protocol.  I can't believe what some of you are going through.  I'd be flipping out to have to keep going for rads when I was already scabby & blistery.  Those of you on longer protocols are made of stern stuff, that's all I can say.

    Gentle hugs to all,  Kathi

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited October 2008

    Finished #17 out of 33 today so I am officially into the second half of radiation- a little redness and soreness but it is manageable but the tiredness is tough. I am working fulltime and have kids at home- but even without the kids stuff (which is fun)- I could easily go to bed at 7 PM every night!

    I was working a second job as a church pianist- which is fun and creative but requires travel on Wednesday nights- I told them yesterday I need to take off the rest of the year- just dont have the energy and with another surgery in November....... hopefully by year end I will be through with treatments and starting to have more energy.

    Kristy

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  • Looneymom
    Looneymom Member Posts: 144
    edited October 2008

    Hi ladies - just reading and catching up, having been on for a while.  Www seems a lot has happened.  Nancy D - I cannot believe they did not tell you about the boost.  Not to brag but I thought I was up for 6 weeks treatment - the last 5 boosts, I was told last week I am not getting boosts.  only 25 treatment.  (five more to go) I think it has something to do with my special-ed dx. Part of me is glad but the other part is scared that if I don't get them it will return to my lymph nodes.  I guess it is a game of roulette any way we look at it.  I also am very red now with a itchy rash similr to sun poising I have had in the past, having rib pain and pec. pain & tightness of this silly expander. The rad side is a feel like a rock campared to the other expander on my left. I am sorry to hear of the burns and other problems some of you are having.  After reading about some of your side effects I think I can stop feeling sorry for myself.  So many of you are so very brave. I wish we all lived closer - I would be glad to pitch in and help some of you are that are so tired or having other problems .  But I guess the emotional support is important. That is what I get from this forum.   Hugs to you all. 

    Holly

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

    Stephanie, I hadn't notice the stiffness until you mentioned it. I was very aware of some swelling in my armpit and was more concerned that lymphadema was setting it. But my rad onc assured me it was normal swelling and should go down. The last few times I've laid down (I'm on my back for treatments) and had to put my arms up, I've been very aware of the stiffness. Yep, just another thing to work through.

    One boost down, four to go. 

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  • roberta37
    roberta37 Member Posts: 371
    edited October 2008

    Kristy - I'm only working part-time and don't know how I would manage if I had to do it full-time right now.  I have a 2 hour drive everyday so even working 4 1/2-5 hours a day it makes for a long day.  I actually have someone come in and clean for 2 hours a week while I'm in treatment.  I didn't do it during chemo but with going back to work and the kids back in school I just wanted to give myself a break.  I'm in bed by 8:00 and can't even stay up to watch my favorite shows.  I must say that the last 3 nights I've had a decent nights sleep and it's been terrific.

    Jane - there is all of a sudden some color to my bald scalp - it's not so shiny anymore!!  The strange part is one side of the hair on my head is growing faster than the other.  Looks some what odd right now.  Was really disappointed when the eyebrows and eyelashes decided to jump ship 6 weeks post chemo and I'm hoping they grow back fast.  I can't remember where I read someone wondering what that strange feeling on their head was and it was their hair in the wind.  I could totally relate to that.  May not be able to see it much but I can sure feel it when there is a breeze.

    Nancy - hope the boosts go by quick.  What are the boosts for anyway?  I'm hoping I'll have hair for my birthday - it's next month on the your (American) thanksgiving.  I figure that shouldn't be to unrealistic??  If that doesn't work then my sights are on Christmas

    Everyone else - hope the rads are going quickly for you and yahoo it's Friday tomorrow.

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