SEPTEMBER 2008 rads group

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

    Happy 48th to both of you Nancy258 and KristyAnn!  Let me know about your boosts, Nancy258.

    KristyAnn, how do you know that your body is a poor metabolizer of Tamoxifen?  How could I know if mine is?  I will be starting tamox in a couple weeks and am nervous about those side effects.  I spoke to my Onc about Lupron to supress my ovaries to stop producing estrogen.  She thought I was too old.  I am 42!  I guess that's old to her. 

    15 tomorrow!  Yeah!!  I need to rest this weekend.  Getting pink and itchy.  Have a great night everyone!

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  • searching4
    searching4 Member Posts: 55
    edited September 2008

    I've had 8 out of 33 and still no SE, though I thought today that the skin above where the tumor was looks a bit darker.  For some reason my rad onc doesn't think I'll have much of a problem.  He's so funny.  He's a rad nerd--  the guys a genius, he's a math whiz and really sharp and loves to talk about science and tech stuff so if you get him talking you can get a lot of information. 

    Pat:  I've never heard of the vomiting, did your rad onc have anything to say?  If not, ask your regular oncologist.  Are you diabetic?  I noticed you mentioned your sugar and my son is diabetic, so it sounds like ketones.  Are you feeling better?

    uulie:  Silverdene is a prescription, unless it changed status in the last few years.

     Good luck all! The weekend is almost here..............................

    Deb

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Happy birthday ladies! I'm getting used to the daily routine but I sure am tired. I seem to be in bed about an hour earlier than normal but it sure feels good to get my sleep. What do you all think of my new avatar? My friends on the chemo board were talking about a monchichi and I had to check it out. One of the girls were told she looked like it. Funny 'cuz I think it looks like me in my wig too.

    Kristy, I'm so sorry about your oophorectomy. There is never a good time for surgery but have faith in the fact that you have been blessed with a lovely family. I wish you a speedy recovery!

    Mary 

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    I finally got started today.  Once they got me all lined up, it was fine.  It seemed to take longer today than any of the simulations or the dry run yesterday.

    I asked about the number of treatments and she said 28 with 5 boosts at the end but then said 32 total, so I'm not 100% sure how many.

    I wanted the last appointment of the day (which is 4:00) so I can leave work early every day and not have to go back (since I have been working very late every night since I have been back to work).  The only problem with that is apparently that they sometimes have to do certain treatments at the end of the day, so I willl get bumped for that.  Tomorrow is 4:00, next week is 7:45 am (at least at the beginning of the week) - after that we will play it by ear.

    She reminded me not to wear deodorant, but started mentioning some natural stuff they make, so I asked about using Tom's of Maine which was actually what she was talking about and she told me to get some and bring it in (I already have it) so they can check out the ingredients - I'm REALLY hoping it will be OK.

    I guess I will know better after tomorrow how a typical treatment will go.  I feel so far behind you all - almost like I don't belong here in the Sept group.

    Chris

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Hi, all. Friday's coming! I'm so glad. I'm starting to burn. I want to take my nipple off and stick it in a drawer somewhere until this is over. This is one time when having sensitive nipples isn't a plus ;). 

    So, I had this funny thought yesterday when I was getting my x-rays. Right before they do the x-ray, I can look up and see a perfect shadow of my breast on the machine panel next to me. Does everyone know what I'm talking about? For some reason I get giddy and embarrassed when this happens. It's like actually seeing that shadow reminds me that I'm lying there half naked--whereas when I'm just lying on the table looking up at the ceiling I can sort of forget about my breasts.

    Anyway, this time that Cat Stevens song, "Moon Shadow," came into my head and I starting thinking "Boob shadow...I'm being followed by a boob shadow----boob shadow,  boob shadow." I felt as if I were on the verge of uncontrollable giggles, but I managed to control it. Jeez. The crazy things that go through my head when I'm lying on that table....! 

    Hope everyone's Friday is great, and here's to a restful weekend.

    Cheers,

    Ace 

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

    OK # 19 this afternoon. And I need this weekend break. My chest has a perfect divide down the middle, red and itchy on one side, normal on the other, where they have been radiating my supraclavicle. And now my underarm has started to get pink. Glad I can't feel anything under there.

    My mx scar, however, has not changed color very much. It's still very lumpy (it was skin-sparing, and I haven't had recon, yet), and I'm wondering how the ins and outs are effected by the radiation. Do the hills get more rad than the valleys?

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008
    Ace - I totally know what you mean about the boob shadow.  It was one of the first things I noticed during my dry run - or undress rehearsal as I like to call it, then again yesterday.  Of course I didn't put it to music, though.Wink
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  • NancyD
    NancyD Member Posts: 3,562
    edited September 2008

    Sharon, re the mediport. I asked my surgeon and he said check to see when your onc wants it out, then schedule an appt. It'll be easy. So I was seeing my onc a few days later and asked him. He said he has this superstition not to take it out FOR A YEAR! That means I've got to keep it in (and keep getting it flushed every 4-6 weeks) until March.

    If your onc will OK it's removal, you can get it out at anytime, now. Wish mine wasn't so superstitious. What's up with that, anyway? Next thing I know he'll be dancing around me, crossing himself, and waking in the door backwards.

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  • pdm
    pdm Member Posts: 168
    edited September 2008

    I am so glad it is friday.This is my first week and 5 rads done...looking forward in getting all done...I have found when I get home I need to lay down a while..is this normal to feel this tired..I used to be able to run circles around every body and now I do laundry and make dinner and I am done..are we all this way??

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Well I'm up for #4 today and yesterday was such a breeze - in and out in less than 10 minutes and no waiting beforehand.  I actually cancelled another appointment and made it later that day because I thought I couldn't make it but I would have made it no problem.  Not feeling anything so far and I don't think you really do until how many sessions?  Putting on the cream three times a day and when I get home not wearing my prosthetic - going lopsided at work just isn't an option.  I can handle bald, no eyebrows, crooked back, dot in the middle of my chest (only for a week) but not showing up minus one boob.  Strange.

    NancyD - my surgeon is like your oncologist when it comes to the port.  He likes you to leave them in because he says if you ever need another one down the road they are very hard to put in again. He is that way with all his patients so I certainly don't take it as a bad sign. My oncologist has no problem getting it removed.   I said I'd see how it goes for awhile and then if it becomes to much of a pain get it out.  The other thing for me is that I'm very interested in the bone drug that helps lower your chances of getting a reoccurrence to the bone.  My oncologist is waiting for a study to come out that was more similar to my situation to make a decision on it.  I think you have to get it intravenously twice a year.  I use to know the name of it but it's lost to me now.

    Okay, Ace now I'm going to have that song in my head all day - I don't have a boob but I'm intrigued by the little red lights and such.  Have to keep yourself occupied somehow.

    Hope everyone enjoys their weekend and a break from the back and forth that goes with all this.  I'm glad the price of gas dropped as my 2 1/2 hour drive everyday could be a lot more expensive.  I have an hour to work, 1/2 hour to treatment center from work, then 45-60 min drive home.  Of course was disappointed that I couldn't keep my eyes open to watch Grey's Anatomy and ER last night.  You would really think I had enough of doctors???  Nancy, I have no idea how you have been keeping up your pace - my hat if off to you (I really wear a hat as wigs drive me crazy) and the other ladies working full-time through chemo and rads.  You have really been an inspiration to me to try and keep things as normal as possible while going through this. 

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  • pdm
    pdm Member Posts: 168
    edited September 2008

    Hi Deb

     My sugar was steroid induced.. the vomiting was a fluke..haven't had it since...I am feeling ok just really tired all the time...and the bone pain is back..I think the steroids had it under control and now that I am off it the pain is back...I guess all the chemo has to get out of my system...

    Thanks for asking

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  • pattyk
    pattyk Member Posts: 25
    edited September 2008

    I don't know if we all feel this way, but I sure do.  I will have my 14th  treatment today and really am tired.  I work until 3:00, go the hospital for the radiation and get home about 4:30 and am useless.  I don't sleep, but it is hard to get up off the chair and do anything.  I look so forward to the weekends!

     I think part of my fatigue is the fact that each day, going to the hospital, is a constant reminder that I have cancer.  You get slapped in the face all over again, each day.  Enough pity!  I will get my rads for today out of the way and have a great weekend...the same kind of weekend I wish for you all.

    One of my daughters has always had the attitude that in whatever measure of time ( one week, one month, one year) this will all be over and all my concerns will be ended.  I sure hope she is right.  Another month for me (34 treatments) and I will be done and move on to the next step, hormone blocking medication.  I know I am lucky, but some days the "tired" makes me forget.

    Have a great weekend to all and enjoy the freedom!

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  • Looneymom
    Looneymom Member Posts: 144
    edited September 2008

    Hi, just jumping in really quick - I have missed the last few weeks due to Hurricane IKE.  I finally got elec. yesterday afternoon - it was off for 13 days!!!  I missed 4 of my rads appt due to no elec. or bad traffic in my area before and after IKE.   It was kinda like camping out the first week almost fun because things were so different, we had a generator to run the fridge and a few things,  when we could get gas we would spend $30 to $50 day for gas on the generator.We had some broken trees and need some roof repairs so IKE is cost us a lot of money this month,  but we were lucky compared to others in our neighborhood that had large trees in the middle of their living rooms and houses  etc.. .  We had a lot of neighborhood dinners and got reacquainted with old and met some of the new neighbors, so their were some positive things that happened due to  IKE .  My kids loved it they had no school until yesterday.  My house is a wreck with no vacuum and the the whole family sleeping downstairs due to the heat.  I have so much laundry and cleaning to do this weekend. It was a strange but also a learning experience.  I am going for my 11th treatment today at 11:50 (CT).  I will be back to catch up on the forum later today or this weekend between all my domestic duties.   I really did miss visiting with  my BC - Rads forum buddies.   Holly

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  • OrliNaaman
    OrliNaaman Member Posts: 40
    edited September 2008

    Hi!  I'm new here, but I was really happy to find this thread and share the 'road'.  I just had my 3rd today.  It's a 'bit different' here...We don't really have appointments...but arrive and put our name on a list on the door.  I come by bus and work across town from 7:30am-2pm (too tired to go after work, so opted for before), so take the 6am bus and then RUN to get my  name on the door first so I can be in at 6:45 and out by 6:55.  I can't tell if I'm exhausted from the extra traveling, or the rads. 

    Ok... a couple of questions: I kept hearing 'you don't feel anything' but I am sure I felt the first one in particular, like a knife...and smelled burning. (please don't think I'm wierd...I really did)  Anyone else have this experience? 

    Also, although they told me NOT to use any burn creams etc, I really want to put some vit e oil on my skin over the weekend.  Someone told me that she did that and just cleaned it off well before going back.  Any input? 

    Here, they have just changed to the new protocol of 4 weeks instead of 7 (following the Canadian design).  I was scheduled for 7 weeks.  I had to stop all hormone treatment (serious side effects)  and they didn't feel I could tolerate chemo...so it's just surgery and rads (I have all sorts of nasty physical complications preventing chemo).  Any thoughts on the studies that show 4 weeks is sufficent? 

    Well...Happy to meet you all.  My heart is with you each!

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  • pdm
    pdm Member Posts: 168
    edited September 2008

    I didn't have any burning smell..as ar as creams they tell you not to use it when you are going to radiation..as soon as I get home I do use Lucern..I think thats the spelling..I don't feel like looking ...lol..I do use aquafor at night ..a little heavy ..also they told me to use a deoderant called Tom's ..it is suppose to be the purest you can get..

    I think everyone is different as far as treatment...I will have 6 weeks then 3 boosts..

     Not sure this helps ..I always need input and this is the place I get it ..

     Have a good weekend and be good to yourself..

    Pat

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

    Orli, I was given an ointment (calendula) by my rad onc and told to put it on twice a day. They give me a new tube whenever I need it. It's very much like Aquaphor in that it's a petrolatum base (like Vaseline). It's very greasy and it's already stained some shirts, so I'm looking for an alternative.

    I think the extra stress of making it to the center early enough to get a good appointment can add to your fatigue. Any extra commute can do it. I have to go a little out of my way, but it's walking, and that adds to my fatigue, I know. I'm also up to tx #19 today, so there's bound to be something setting in from the rads.

    Pat, I've been using Tom's of Maine deodorant for a while (also the toothpaste). But my rad onc said no to it on the treatment side.  So only one pit gets gelled in the morning. My only hope is that the sweat glands on my cancer side are also getting fried and shrivel up.

    Have a nice weekend! 

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  • nancy258
    nancy258 Member Posts: 162
    edited September 2008

    Thanks for all the birthday wishes.  KristyAnn, enjoy being 47 for couple more weeks!

    Roxi & pdm roberta37 & pattyk, I feel the same way.  I'm fine during the day.  I have all kinds of energy.  But after I get home from work around 7PM and get something to eat, I'm done.  I couldn't even make til the end of the two hour premiere of Survivor last night!  and I haven't missed a season yet!  I'll have to start recording.

    Dancemom, you absolutely belong in the September group.  I'm really interested in everyone's experiences whether they are before or after me.  You'll get lots of advice from all of us ahead of you.

    Ace, hahahahahahahahahaha  I just noticed the shadow for the first time yesterday when I got my xray.  I'm looking, thinking, hey, that boob shadow looks pretty good.  Hey boob, not a bad looking shadow profile, hahaha.  Wish it looked that good for real.  If I bust up next week while getting my xray, it's all your fault.

    After #15 today I'm not really seeing any red or even pink, but I am itchy.  While getting dressed after the treatment, I noticed the hair in my armpit on my treated side is only growing in the top half.  The half down toward my breast is completely bare.  I haven't been shaving, of course, but just noticed today that the hair is not growing there, or it has fallen out.  I'm pretty sure it's fallen out, because it had extended down to my SNB scar, and now it doesn't.  It's a very distinct line.

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  • EmilyJane
    EmilyJane Member Posts: 5
    edited September 2008

    good to hear from all of you.

    congrats to all who are on their way and muddling through this...it isnt easy.

    and best to all of you who are just starting out.

    Today was the last session of regular rads for me.. WOOOOOOO HOOOOOOOOOO!!!!!

    I have 7 more sessions left, out of 35, which will be boosters to the scar.  So tell me, has anyone else experience incredible frustration around the drawings?   The rad onc and the techs drew on me today, with a blue marker.  I really dont get it.   They tell you to steer clear of fragrance, anything remotely chemical, then DRAW on you?????  I spoke up when they put indigo ink in me with a tatt.  Really.   

    So I went home with blue smeared all over the inside of my camisole.  My chest is raw and red and burning...I dabbed it all off.   I am sure if it is important they can redraw it on Monday...but a whole weekend with all that toxic stuff on me, I dont think so.....

     sorry to complain...it is getting close to the end.  All I can think of is eventually NO ONE will look at my chest unless I want them to!! What a thought....

    take care....

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Just finished my first week and I feel pretty good. I talked to my PS surgeon today and they said to call in March for an appointment. Great, I get to endure this expander that much longer. Oh well.  As for lotions, I'm using the Medline product Remedy Skin Repair Cream. I just googled it and they have it at Walgreens! I like it so far. Here's a link to the product.

    http://www.walgreens.com/store/product.jsp?CATID=303137&id=prod1648206 

    Orli, welcome to the rads group. They sure do things differently by you.

    Emily Jane, can't wait to be as far along as you, jealous...

    Boobshadow, ah yes. I'm been admiring it for sometime now.

    Looneymom, Ike must have been frightening for you and your family. Its amazing how new friendships develop from devastation and sadness. Glad your all okay.

    Have a wonderful weekend ladies. My college daughter is home this weekend and were planning on getting out the halloween decorations. I'll be done with rads the day before halloween so it doesn't sound that far off after all.

    Mary 

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  • dancemom23
    dancemom23 Member Posts: 56
    edited September 2008

    Had #2 today.  All went fine, much quicker today so yay!  Today I had my first choice of appointment at 4:00 and it worked just as I planned - I am home by 5, if I stay at work, I never get out at 5 and end up getting home so much later.  Unfortunately next week I'm on early.

    I asked about using the Tom's of Maine deodorant and was told no Frown - they gave me some deodorant crystal spray mist, but it doesn't seem to work as claimed.  I'll continue to use the Tom's on the right anyway.

    I think I'm glad that I'm easing in to this all with this first week being a partial week of treatments followed by a restful weekend before getting into the full swing of it all.

    Have a great weekend!

    Chris

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

    Good afternoon, y'all.  Well, 7 down, 26 to go, and on top of all that, I had my annual pap smear. Tongue outUndecided 

    NancyD, I can only imagine your onc doing all those superstitious things.  GEEPERS!

    I'm starting to feel a bit tired, and my skin feels a bit more taut and burned, so I'm glad I'm getting a break with the upcoming weekend!  Hopefully, the weather will be as nice this weekend as it is today, so I could get out of the room, if only for a minute!  I totally wish I didn't have to be away from home!!!  Not only am I homesick to get back to the village, but I'm still homesick for Texas!  I wish I could drive to my appts!

    Looneymom/Holly, I'm glad y'all are doing as well as could be expected!  My stepmom said her sister decided to stay in Houston during Ike, so I hope they're doing well too!

    Well, I hope y'all have a great weekend!

    Take care.

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

    Good Evening,

    Me too - I couldn't keep my eyes open to see TV. #19 down - My breast is still very pink (no blisters/burns so far) - and under the arm it looks alittle tan. I can now see the circle outline of where the rads are hitting me. Looks so werid.

     Can someone explain boosts - do the sessions last longer?

    Have a restful weekend!

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited September 2008

    Mary, My college daughter is home this weekend too- for the first time since we took her to college on August 20! Its Homecoming at our local school so she will be able to see a lot of friends tonight and watch the high school band- she was a band nerd and still is- in the college band! She requested mac and cheese, no bake cookies, steak and apple pie - I pulled off the mac and cheese and no bake cookies tonight, tomorrow is steaks and applie pie- but I cheated on the pie and bought one from the Schwanns man. Shopping trip and lunch out tomorrow! I have missed my little princess!

    Rads #8 today along with Herceptin but so far so good and I didnt get my sponge bob sticker nurse in the chemo room!

    Kristy 

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited September 2008

    Kristy,

    I saw that your daughter was home on the May board. Hope you have a wonderful weekend, sounds like you have alot planned. Take it easy but enjoy! You deserve it. We went for dinner tonight and have a fundraiser to attend tomorrow night for my oldest sister. She's running for county board and we're all going to support her. And don't you mean sponge boob sticker?

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008

    Well today certainly go as well as yesterday's.  The technicians couldn't get me up on the computer - not a good sign.  Of course they figure this out at 12:00 and everyone who can help them is on lunch.  So I ended up being there for over 1 hour.

    When I had a CT scan done back in March they found a cyst on my ovary.   As the surgeon put it "Nothing to worry about but does need to be followed up."  So I let my doctor follow up on it.  Three ultra-sounds later he decides that I need to see a gynecologist  because of my history with breast cancer and that they believe it is a simple cyst but want to make sure. It's not resolving itself - well as soon as I started chemo I was was in chemopause.  Ironically the gynecologist that he is sending me to is out of my surgeons officer.  Why do I think that I should haven taken him up on his offer to follow-up.  I would not normally be overly concerned but my breast cancer started out as "just a cyst" and was not followed up on.  I really wish I could stop my mind from racing about this.  No one seems to be in to much of a hurry about this so I really hope they know what they are doing.  I'm not overly confident in them anymore.

    Dx 2/23/2008, IDC, 3cm, Stage II, Grade 3, 3/12 nodes, ER+/PR+, HER2-

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  • roberta37
    roberta37 Member Posts: 371
    edited September 2008
    Well today certainly didn't  go as well as yesterday's.  The technicians couldn't get me up on the computer - not a good sign.  Of course they figure this out at 12:00 and everyone who can help them is on lunch.  So I ended up being there for over 1 hour.When I had a CT scan done back in March they found a cyst on my ovary.   As the surgeon put it "Nothing to worry about but does need to be followed up."  So I let my doctor follow up on it.  Three ultra-sounds later he decides that I need to see a gynecologist because of my history with breast cancer and that they believe it is a simple cyst but want to make sure.  It's not resolving itself - well as soon as I started chemo I was in chemopause.  Why do I think that I should have taken my surgeon up on his offer?  I really wish I could get my mind to stop racing and not feel that anxiety once again but it's not that easy.
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  • janloy
    janloy Member Posts: 113
    edited September 2008

    Sharon and Nancy:

    I have no choice but to leave my port in because I will receive Herceptin until at least June of 2009. But, I've talked to others who have been through this and you have to look at the bright side. It seems most oncologist don't want to remove it until they are sure you won't need it again so.... once you are through all this treatment and months pass, SURPRISE your oncologist will say let's get that thing out and it will truly be a time for REJOICING and CELEBRATING. Put it out of your head that they are being caution or superstitious. I know that is easier said than done, I still spend many night awake with the racing mind.

    I got my prostheses yesterday. Pretty cool. Much nicer than I thought. Pretty new bras. I may just forgo reconstruction. Probably not but it is nice to have something comfortable under my clothing.

    Love and prayers for the September Rad Group!

    Jane

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  • princessS
    princessS Member Posts: 45
    edited September 2008

    Rose 47-the boost is just where the radiation is concentrated in one spot.  It doesn't last longer, the lady that goes right before me gets them now, and it takes the same amount of time.  I had #18 on Friday, 16 more to go.  All I can say is What Fatigue?  I was up at 6am yesterday, had a busy day at work, got zapped, and stayed up until 10pm with no problems.  I probably just jinxed myself but so far just not much fatigue.  The skin, however, has a distinct line of where the rads are hitting me.  Also, when I go to sleep at night, I immediately put my arms above my head, anyone else do this?

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  • redheadace1
    redheadace1 Member Posts: 212
    edited September 2008

    Hey, everyone. Number 19 down and It's getting pretty painful--my treatment nipple is swollen and burning. Glad to have the weekend to regroup.

    Holly--Welcome back. I hope you get some help with the cleanup. I can't imagine having to deal with a natural disaster and BC. I admire your attitude.

    Orli--Welcome. I DEFINITELY felt the first treatment, although I didn't notice a smell. I know I've read about other people noticing that smell, though. I think the first couple of treatments were hard and painful, but then the body seems to adjust.

    EmilyJane--Yay! I hope your boosts go well. I know what you mean about getting your privacy back. I don't have the ink issue too much, as I have the permanent tattoos.

    Roberta--I hope you can relax a bit this weekend and get your mind off things. I know how hard that is, though. Keep us posted on the ovary situation. I will be sending you good thoughts.

    I wanted to tell you all about something really sweet my boss did for me. He drew a big flower on a large piece of paper and divided the petals, stem, etc. into 33 sections. Every day after treatment I color in another section. It's a nice little ritual--kind of like an Advent calendar. He was really embarrassed when I pointed out that the center of the flower looks exactly like a breast! But I guess I've got breasts on the brain Smile.

    Hope we all have a restful time this weekend with our family and friends. And Sharon, I hope you get a chance to get in touch with the folks back home, and ease your homesickness.

     Best,

    Ace 

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

    Ace, that is a really neat idea about the flower petals! That could be used for so many things that have a "count-down."

    Princess, I have a definite line of demarcation, too. It goes right down the center of my chest, right through the tiny tattoo they put there. So, I guess that shows just how accurate they can make these treatments.

    #19 down. Monday I will be 2/3rd's the way through. Only two more weeks. Part of me is saying, "Hurry up and get this done,"  but the part of me that has to work is saying, "Yikes, I've got deadlines coming up fast, work that's not done, and no extra time or energy to do it! Slow things down a bit." I've never felt more schizophrenic.

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