SEPTEMBER 2008 rads group

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    After treatment #6 yesterday, saw the dr and the nurse told me she called in prescriptions for two creams for me.  One to hold on to betamethasone, and one to start immediately Biafine 3 x a day.  When I went to pick them up at the pharmacy, they told me the Biafine was not covered by my insurance (Aetna).  I had to pay the $51.69 for the tube so I could get started, and have been calling everyone I can at Aetna today to dispute it.  It's on their exclusion list.  Has anyone else run into this problem with Biafine?  I'd be interested to know if other insurances are covering it.

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

    Rose, my onc said he wanted me to start the Arimidex right away, rads or no rads. He even gave me a month's worth of free samples until my mail order prescription gets filled. You know they all do it differently, for some reason.

    Stephanie - CONGRATULATIONS! I'm not a grandma, yet, and since neither of my kids are married, that's just fine. But I love babies and hope I'm still around when they get to it. And planning a wedding has to be about the most fun I've ever had. My older sister lived out of state when she got engaged, so I did a lot of hers. Then five years later, I did my own. 

    Nancy - $51.69?  That stuff must be magic! What are the main ingredients?  Have you already burned or is this preventative? 

    #11 today. I'm glad these seem to be zipping along.

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  • TexanCupig
    TexanCupig Member Posts: 1,539
    edited September 2008

    Hi y'all! Laughing  Here I am in depressing, rainy, cold weather...Now I REALLY wish I was back at home, because the weather was a lot better and a bit warmer there?!? Tongue out  My brother and I got here Thursday afternoon, and I met with my rad onc on Friday.  Needless to say, my emotions got the best of me because I started crying...I wonder if it's from having to be away from home for so long, or because I'm getting ready to start radiation or both?!? Surprised   I also had a slight fever when I went for my appointment, so I don't think that helped matters any...Thank goodness the onc is REALLY nice!

    Anyway, I found out that I'll be having 33 treatments, which I should be starting them tomorrow?  Dr. C. never said anything about getting boosts...I'll be having four spots radiated; the part of the collarbone that's closer to my throat/esphogus, the right side of my chest, my right armpit, and right behind my armpit.

    I had the CT scan and my 1st simulation yesterday, and am going to have the 2nd one this morning.  I got tattooed yesterday, and I don't think it helped any, when Dr. C's co-worker told me that one of the tattoos I have is ugly?  Would you consider that professional, coming from a professional?

    I'm definitely not looking forward to that 1st treatment tomorrow, and unfortunately, I'm still having issues with this whole radiation thing!  Thank God my support group will be on Thursday!

    Well, I hope y'all have a great week...as for me, I'm doing as well as can be expected...Halloween can't come around fast enough for me, because that SHOULD be the day I receive my LAST treatment! Smile

    Take care and God Bless y'all!

    Sharon Wink

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

    Aw, Sharon, the treatment itself is nothing. Even doing four fields (I'm having the same number), you're in and out in less than half an hour unless they are backed up. In fact, on a good day, they call me right in and take me as soon as I've changed. Then I'm out of there in twenty minutes.

    So I hope you have some sightseeing plans for ANC, or a lot of good books to read. Smile

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    NancyD, no I haven't burned yet.  I think the Biafine does both, prevent by keeping skin hydrated and help heal burns.  On the box it has directions for wounds, 1st & 2nd degree burns, graft sites and radiation dermatitis.  Contains purified water, liquid paraffin, ethylene glycol monostearate, stearic acid, propylene glycol, paraffin wax, squalane, avocado oil and a bunch of other stuff with long names.  Most of these words are greek to me.  Prescription only and they had to order it special for me.  Made in France.

     Sharon, hang in there.  Even though I've started, I'm still anxious and having trouble sleeping.  But, we'll get through this, and before you know it, it will be Halloween and we'll be done.  They've got the Halloween stuff in the stores, so it's gotta be close!

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Sharon: I seem to be crying at the drop of a hat in anticipation of my radiation treatment. I think this whole process can be taxing at times. Hang in there. I'll keep you in my prayers.

    I had more pre-testing today. Heat scan, lung function, etc. I think those are primarily because I agreed to be in the test study. I surely wish I didn't have to wait until the 29th but, it is what it is. I won't be done by Halloween like some of you but I'll be right behind you. First week in November should be my last week.

    I'm still confused on the whole deodorant thing. One would think I have more important things to worry about. The technician today told me I COULD use it on my right side (non cancer - non treatment side). I'm positive I was told otherwise by someone else. Too many cooks in the kitchen. What says the "Starting Rads in September" group? I'm headed out tomorrow in search of the lotions that are on the "approved" list.

    Love, prayers and thanks to all of you,

    Jane

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  • searching4
    searching4 Member Posts: 55
    edited September 2008

    Hi Jane, my doctors have not even MENTIONED  deodorants although I am going to ask them.  I also have to ask about lotions and would appreciate advice from any of you all.  I wonder if it's good to use them proactively BEFORE the burns start.

    Anyhow, my first treatment this morning went well and I didn't feel a thing.  They got me out on time, which is great because tomorrow is the first day I have to catch a train directly from the hospital. 

     tchmusik:  congratulations!  This is one of the best healing medicines anyway, babies and engagements.

    Nancy D:  I'll be following you on the Arrimidex path, but not until after radiation.  Truth be told I have more fears about the drugs than the radiation, because I am at risk for osteoporosis although today my bones are great. 

    Deb

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  • sunshine787990
    sunshine787990 Member Posts: 147
    edited September 2008

    Started my rads on Sept. 3rd...Have been following board since April.

    Decided to post today.??

    tchmuzik....congrats...a new baby and a wedding...you will be busy but very blessed!

    Deodrants...they gave me something they called deodrant...the nurse says it doesn't work

    but I'm trying it anyway..thank goodness it's turning cooler here.

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    tchmuzik: Congrats on becoming a grandma again and on your daughter's engagement. Don't apologize for sharing. Your post brought me tears of joy and finally gave me an idea of a photo I didn't mind sharing. I uploaded a photo of myself w/my two grandchildren ages 2 and 4 just days before my hair fell out last Easter.

    My children and my grandchildren are what keep me going. I love hearing about other people's families.

    Love and prayers to all.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    I made it through treatment #1 - didnt notice anything. They gave me samples of aquaphor to apply- color within the lines they said.

    Kristy 

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Well I finally got my start date after first being told that it wasn't going to happen until the week of the 29th. A little jumping up and down got it moved to the 23rd.  Still not happy it didn't start within the time frame I was told but it still puts me within the 4-6 weeks after chemo.  Didn't really need the added stress of dealing with this.

    For some reason I have a lot of muscle/bone pain right now that they say is a result of the chemo.  Probably doesn't help that I don't sleep well.  So I'll be on  an anti-inflamatory for a week and see if that helps and try taking something for the sleep.

    Glad everyones treatments are going well.   

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited September 2008

    Woo Hoo!!  Had my last treatment today!!  I was given a graduation diploma even!! 

    The 3 week treatment wasn't bad, (except for the looong round trip) but my little brown-nosed puppy came through with very little SEs!  A bit red, mostly,but really no burning and I'm a fair-skinned redhead! 

     It may get worse, I'm told, as the rads are cumulative.  Some fatigue, which will also increase for about a month.  But, that's it, so far!

    Good luck to all of the rest of the September group.  I'll keep track of your progress.

    Susan

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Congratulations Susan!!

     I got a graduation survivor keychain when I graduated from chemo!

    Kristy 

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  • Kpete
    Kpete Member Posts: 10
    edited September 2008

    I just started rads on 9/12/08.  Had my 3rd one today, only 30 left!  So far, so good.  I've also heard to apply something like Aquaphor after each treatment.

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  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2008

    roberta - I had bone pain from the chemo as long as 2 months after it was over - it WILL go away - I know it doesn't seem like it will.

    mzmiller - CONGRATS!!

    17th treatment today - saw doctor - told him about itching - told me to use 1% hydrocodone cream - if that didn't work to use Benedryl cream or jel and if that didn't work he would give me a script for something - have tried the benedryl and it does help.   Also continue with the aloe.

    ZZZZZZZZZZ - that's all I do now - sleep!!  

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Roberta: I'm glad you are starting earlier but admittedly a little jealous. My start date is still the 29th. Perhaps I should try the jumping up and down. It will be 8 weeks in between chemo and rad's but I didn't have my surgery until after chemo due to the size of my tumor. Oh well, I will try to Let Go and Let God.

    Susan: Congrats! I am so anxious to have this behind me.

    Blessings to all.

    Jane

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    I think I will be joining you guys.  I have been following this thread since the beginning figuring I would be joining you, but didn't post because I wasn't sure.  I was waiting for Oncotype results to determine if I needed chemo - got those Monday, no chemo for me!  I was also waiting to be randomized for mammosite trial - I ended up with WBI and imagine I will be starting soon.  I have another (my 3rd/4th) simulation and tattoos today.  I'm a bit frustrated because of all the repeats, I had the first simulation about 3 weeks ago and it didn't work out so well, so I had to go to another site the next day to have it completed.  Then I had a drain removed so they wanted to do it again to get better info to submit for the trial, that was about 2 weeks ago.  Now they are saying there could have been changes so they want to do it again before actually beginning. 

    I'm a bit nervous because I have very sensitive skin, and am worried about how it will react. I'm also always so tired from work and my kids activities, I can't imagine how I will feel with the rads. 

    I'm glad we have this forum to share our experiences, I have learned so much here. Thanks.

    Chris

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Ldies,

    I need your thoughts. I have my dry run today. Basically, they'll line me up and make sure all the tattoos match up to their calibration last week. Here's the scary part. I get a call from the radiation nurse requesting the types of implants I have and to call them back with model no.s So I did, come to find out my expnader is the only model that Mentor makes that's not MRI compatable. I had an MRI last week to line me up for the tattoos. Okay, now what. Is this thing gonna blow? Is this causing any extensive damage internally to me? Well my plastic surgeon send over the specs on the model and I'm bringing them with today. The radiation technologist says not to worry, the titanium in the expander just causes the area around it to scatter on screen. Okay, aren't they suppose to be pinpointing where the tumor was or are they blasting the entire breast. I've never doubted any of my decisions but this one worries me. I see them at noon today and can't stop thinking about if this is the way to go.....

    Roxi

    Congrats to all that have graduated! And kristy, glad to hear it went well for you. 

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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Roxi: I'm afraid I cannot be of much help but I believe what the technician told you is true. The use of metals not compatible do not necessarily hurt us, they just askew the ability to read results and, from what my technician told me, can intensify the radiation. I will say a prayer for you.

    Chris: Welcome to the club no one wants to be in. I hope things go smoother for you from here on out. It is so frustrating to have set backs. All we all want is to get this portion of our life behind us. Best of luck,

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  • sunshine787990
    sunshine787990 Member Posts: 147
    edited September 2008

    mzmiller99  Cheers to you on finishing your long roller coaster ride!

    What kind of cream did you use ?  I am also fair skinned....will have my

    6th treatment today.  Does anyone think during their treatement...what the heck are they

    doing to me and should I just jump up and run????

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  • tkone
    tkone Member Posts: 511
    edited September 2008

    All,

    I'm with the later September group, I don't start until the 29th, but wanted to ask a question.  I went to a naturopath yesterday to talk about supplements etc and she mentioned that during radiation I shouldn't be taking anything with extra antioxidants including Vitamin C.  I usually take a multi-vitamin, calcium supp and vitamin C every day.  It has something to do with the free radicals created by radiation and the antioxidants not letting them do their job.  Anyone heard of this??

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited September 2008

    Sunshine787 - I used the Aquafphor near the end of the treatments, and was told to continue to use it as the effects may not be over for several weeks.

    Do they play music for you?  Before my techs would run out the door, they'd put some tunes on and it did make the time go faster.  I thought they'd bust a gut when I asked to hear the Violent Femmes!!

    Tracy - I was told to stop my mega-multi-vitamin because of the antioxidents, but also because they had zinc in them, which affects the way the radiation hits the skin.  They told me to just find a very simple vitamin.  Good luck.  I just stopped taking them until treatnent was over.

    Susan

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    Congrats Susan!

     Tracy, I was also told by my Rad Oncologist to discontinue the multi-vitamins until radiation is over for that same reason.

     Sunshine, yes I've had the urge to jump up on several occasions, but I'm afraid I'll radiate something I shouldn't.  It's the only thing keeping me on the table!

     Roberta, glad things are starting to move along for you.  There's nothing worse than the waiting.  Less than a week will go by quick.

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited September 2008

    Hi Ladies,

    I'm off to my 3 rd tx today , first too went well. My only concern is moving while the rad machine is going and having them zap something that shouldn't be zapped Surprised Yesterdays went alot faster as they didn't have to do any films or anything. was in an out in 15 min.

    I got a list of creams to use and was told the best one to use was the glaxol cream, it's water based and has no lanolin. While all the other creams were also good on the list the techs preferred this one. They also said no deoderant on the radiated side. Mind you ever since chemo i haven't really needed it on either side, one bonus i guess.

    Today is a double shift,  My reg radiation is at 9:00 then i  have to go back at 3:00 for my boost, so won't plan much for today.

    I'm pretty settled into my hotel room , it's adequate for what i need. Looking forward to the family coming to visit this weekend.

    Hope everone has a good day. Innocent

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  • TexanCupig
    TexanCupig Member Posts: 1,539
    edited September 2008

    Hi y'all...I'm back yet again...AND FRUSTRATED as ever!!!YellYellSurprised  Damn and tarnation if my treatment isn't starting today?!?  The specialist said someone else was going to set up the machine to radiate the lymphnodes in my neck???  She also said if they don't start treatments tomorrow, I have to wait until Monday...needless to say, my day was COMPLETELY shot to hell in a handbasket!!!  I was an emotional wreck again yesterday!!!  BUT, I did talk with my friend that works in onc, and she's going to try and pull a couple of strings for me so that MAYBE I'll be able to fly home for a weekend visit about halfway thru my treatments?! LaughingCool

    Well, I feel a little bit better today, but I really wish the rain would go away! 

    Sunshine -- I've been thinking...wait!...I don't want to think...I WANT to be home!!!  I'm still having issues, even though I may get to fly back home for a weekend visit...

    angels -- you had to travel for your treatments too?

    and last but not least...

    NancyD --whenever the weather decides to clear up, I plan on taking some time to check out ANC!!!  One of my 2nd cousins says I can always go hang out with her, but they're a bit younger than me, and unfortunately, I'm not that much of a social person?Embarassed  There a couple of people I plan on 'hanging out' with, but other than that, I'll be knitting, and I REALLY want to start beading again!  I could also be like quite a few of the native ladies here...AND GO BINGO!...LOL!!! Laughing

    I TOTALLY thank y'all for your support, otherwise, I'd be in a world of hurt?!?  Unfortunately, I don't think my brother really understands what I'm going thru?

    Y'all have a great rest of the week!

    Sharon Wink

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  • sunshine787990
    sunshine787990 Member Posts: 147
    edited September 2008

    TexasCupig.... So sorry for all of your delays... It's hard enough to get yourself mentally ready...I don't think they totally understand we are on a mission and have a plan to finish this ride and we don't want any delays!!!!  I will put you in my prayers.... That's one thing I have started to do during my treatement. First I pray that I don't move or sneeze or jump up and run!  Then I run down my prayer list....

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    TexasCupig - I so understand being delayed and sunshine said it best about it being hard enough to get yourself mentally ready.  I'm starting 1 week 1 day after I was told I would and that is only because I stomped up and down.  Had I not done that I would be looking at the week of the 29th and over the 4-6 weeks that every oncologist seems to like.

    I know when I was on chemo I wasn't allowed to take an anti-inflamatory - does anyone know if radiation has any restrictions like that?  I'm taking them right now for really bad pain in my lower back and hip that was made worse from chemo (pre-existing condition) 

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

    Roberta, I'm pretty sure you're allowed the anti-inflammatory. In fact, if you get too burned, they tell you to take something. But check with the dr or nurse practitioner to be sure what's on the no-no list.

    ********

    In answer to the question which came up a few posts above, NO ANTI-OXIDANTS. The free radicals are what the radiation creates to kill the cancer cells, so we don't want extra anti-oxidants to counter-act the radiation. OK, that doesn't mean you can't have your morning OJ (although it might be better to substitute another less A-O juice). It means you should give up supplements that promote anti-oxidation and LIMIT anti-oxidant foods. While I can't think of any foods that promote free radicals, I wouldn't go so far as to seek them out and put them in my diet (unless it was chocolate, LOL).

    ********

    OK, here's a sign of leftover chemo brain. I've lost track of my rads. They've become so routine and each one is the same as the last. Was today #11 or #12? I think 12, because they seem to be flying by. Anyway, I know my end date, and that's all that counts! Here's to October 6th!

    Edited to change the end date...I had it wrong. 

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Hey, Nancy D. Today was 12; we're on the same schedule. How are you doing with your blisters? I hope everyone else is doing well. I think I've caught the flu or something; I feel like I've been hit by a truck. And I started out rads with a cold! Sheesh. I guess my resistance is down.

     Wishing everyone well for the rest of the week.

     Ace 

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  • Jeano77
    Jeano77 Member Posts: 237
    edited September 2008

    Hello to everyone.  I start rads on the 29th which is much later than most, but I am hoping that it is okay to join in with this group.  There are lots of folks on this board that I went through chemo (boards) with (all awesome women) & I know I could benefit from the information here. 

    Jean

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