APRIL Rads Anyone?

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  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited April 2009

    I started March 17 and will end May 6.  It seems like a long ways away still.  My radiation oncologist gave me Biofine for the burn.  And, I use hydrocortisone for the itching and red bumps.  They said that was radiation dermatitus.  Has anyone else had that?  Thanks!

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Hi Ladies,

    Well I got a call this morning from my Onc's office and now my tumor marker #'s are now BELOW NORMAL! Phewwwwwww!  I guess it was the chemo affecting the #'s, but I sure wish they wouldn't make you worry so much.  I was sort of a wreck since last Thursday.  He still wants me to go for the scans though, but I feel a little better about it now.

    This Thursday I go for my radiation "mapping?", then Friday ct scans and bone scan.  Monday the 20th I start my treatments, then after my 2nd one, just one hour later I have to go for a pet scan... ugg.   I hope after that I can just get thru this darn treatments...

    Have a good week everyone!

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  • BrandonMom
    BrandonMom Member Posts: 412
    edited April 2009

    Susan, talk with your onc about the PET scan in relation to your radiation treatment.  My onc said there was no point in doing a PET scan until after radiation.  He said the radiation would cause false positives.  Makes sense to me as your body will be rebuilding after the radiation (fast cell growth) and that may look like cancer on the scan.  My onc recommends waiting until about a month after radiation.  I just don't want you to have a big worry again.  I'm getting my PET scan the month following the completion of my radiation.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Hi ladies.  My day has been going good so far.  I'm ready to start Week 3.  I don't know if it's from the rads or not, but yesterday during my walk I felt more fatigued than usual.  Other than that, I was doing ok until a short while ago.  I swear, I didn't know that 58 yr old bullies exist.  I'm ok now, but one of our managers didn't like the fact that I corrected him about something (it had to do with American Idol, of all things!) and he got loud and vocal and kept shouting around the office "If you want to know something about American Idol, just ask Elaine!".  At first it was funny but then I realized that he is a really sore loser and he was being a bully.  As much as I hate myself for doing it, I went into the restroom and cried.  He's a big jerk.  I felt like I was back in grade school again.  Seriously.  Oh well, I'm bound and determined not to let that sore loser ruin the rest of my day.  I have the dentist to do that for me!  LOL  I have to go see the dentist today at 2:30 because a tooth is bothering me.  Yuck!

    Susan, I'm so glad to hear you got some good news.  What a long weekend it must have been for you!

     Catherine - I think it's a combo of the battle & chemopause.  I can get very emotional too!

    I hope everyone is having a great day!

    Love, Elaine

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    BrandonMom-Originally I was not supposed to have the scans until after my rads were completely, but the spike in tumor markers prompted my onc. to go ahead with the scans now. But I do know what you are saying about the false positives, hopefully because I will only have had 2 treatments that won't happen....?

    Elaine-Thanks.. and oh yes it was a very long weekend indeed!  And kick your manager in the butt for being such a jerk!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Susan, he's not my manager, thank goodness! 

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  • BrandonMom
    BrandonMom Member Posts: 412
    edited April 2009

    Susan, since the primary reason for moving up the PET was because your tumor markers were going up, but now they are down, maybe the decision for the PET needs to be re-thought as well??  Just a thought, and I really don't know the right answer.  I just know that every PET exposes us to a lot of radiation and stuff, so I'd think they should be done at a time that will give the best results.  It creeps me out when I think I'm "radioactive" after the PET :)

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  • BrandonMom
    BrandonMom Member Posts: 412
    edited April 2009

    I had rad #8 today. I'm getting deep red squiggles near my mast scar.  Perhaps a blessing, but since I have no feeling there, I don't feel a darn thing.  Tomorrow is "doctor day", so let me know if you have any questions you want me to ask my rad onc.

    They also switched the way they were doing the skin bolus.  They were using wet towels, but they required a lot of fiddling with to get them to conform to my expanded boob.  They tried some super flab on Friday to see if that will work better.  They had some difficulty getting that to conform today.  Any skin that the washcloth or super flab doesn't touch, doesn't get the radiation, so air bubbles are a bad thing.  Now I can see a radiation advantage of not having an expander. 

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    I have expanders too... and am getting the bolus... so I guess I'm in store for the same issue?!?

    Believe me, I tried talking my way out of the scans this morning ... but no dice, and I know how much radiation those pet scans give off...  aghs.

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  • busymomof5
    busymomof5 Member Posts: 25
    edited April 2009

    I have an expander on the right side. They never said anything about a bolus. I have my simulation on the 17th and start radiation on the 20th. I will ask them about the bolus at simulation. 

    I really want to just start radiation and be done with it. It will be 5 weeks post chemo when I finally start. They were concerned about the side affects from Taxol. I lost 1 fingernail and have 4 that look ready to go. I really hope not because having the one removed by the surgeon really hurt once the block wore off.  I need to be doing something or I think too much. My appetite is not back yet but I am enjoying chocolate vanilla twist soft icecream cones! I don't think that it is a good diet but it is working for now.

    Good luck to everyone having rads this week. 

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  • bethaib
    bethaib Member Posts: 125
    edited April 2009

    Had my first rad treatment today.

    You know I did fine during all the mapping and was able to stay relatively calm, but today....it was like it hit me finally that I am getting radiation...and it scared the crap out of me. I tried to be as calm as possible, but I know I was breathing deeper than I did for all the mapping...and then I worried that the radiation would go deeper into my lung than they intended. I need to ask the doc that question...about the breathing and how it effects where the radiation goes. Has anyone had that answered already by the doc? I am sure we do not breathe exactly the same each and every time.

    It was a bit strange, seemed like I felt something..but maybe it was all in my mind? Hair on my arm that was raised above my head prickled a bit but that may have just been nerves lol

    It was pretty quick. I was in my car about 10 minutes after my appt...I got there a little earlier and not sure exactly what time they took me in to be honest. But anyway, I got in my car and I started to cry. I couldn't let myself have a meltdown in the parking lot..so I reined it in as I ran some errands...but the tears have been there off and on since. Haven't really cried since this whole thing started...maybe it's finally sinking in....

    busymom...I hope you don't have any further problems with your nails : (    Be thinking of you.    I'll tell you, the ice cream sounds good - go for it!   = )

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  • marymoir
    marymoir Member Posts: 245
    edited April 2009

    Count me in for this ride, please!  Finished 4 TC just about a month ago, and have my "verification day" tomorrow.  Not sure exactly when my 1st actual Tx will be as they are going to give me the schedule tomorrow, but I'm actually antsy to get this train started so I can get it over with before my kids are out of school for the summer. 

    I was reading  the earlier posts about shortness of breath, and have to say that this has been the worst SE for me as it's still persisting, even a month post chemo, b/c it's preventing me from exercising.  THAT makes me antsy b/c I've always been an exercise fanatic (for stress- and weight-management issues).  Plus, I'm a huge cyclist, and with the weather turning nice here in Indiana (FINALLY!!), I get really jealous when all my riding buddies fly past my house on their bikes!!  Also, I started a team of the Race for the Cure here this coming weekend, & will feel like a putz if I can't finish the walk.  It's only 3 miles, but I still get winded just walking around the block.  Docs say it's b/c I'm still anemic, & tell me that some people take as long as 6 mos. to get their hemoglobin back up.  WTF!!!  Cry

     Thanks for all the great posts!  Even though I'm joining late, I've enjoyed reading them -- they've given me courage & lots of great tips! 

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  • terrilee
    terrilee Member Posts: 36
    edited April 2009

    Marymoir, I feel much the same as you. I got a new bike and was able to keep up with my DH last year, and so want to get on the bike. My shortness of breath is a now better when I'm not exercising, but I'm still pretty weak compared to what I'm used to. I went to start my 3rd week of rads this morning, but the machine was down. They weren't sure about tomorrow.

    My skin is still looking good using calendula oil. I wish I could say the same for my hands and nails. I haven't lost any nails, but they are a mess and tender again. I also have some tooth pain when I brush. I'm not sure if its the receded gums or something more. I'll find out soon enough and I don't look forward to the visit.

    My bolus is a gel. I get it every other day. 

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  • eadsla
    eadsla Member Posts: 217
    edited April 2009

    fleesc--So menopause lasted six months for you, huh?  I wonder if chemopause will be the same for me.  I don't like the idea of the flashes/freezing lasting that long.  I'll say it again, it's amazing what women are able to tolerate physically in the our lifetime...and that's with perfect health.

    Elaine and Bethaib and others who have commented about losing it emotionally.  THANK YOU! It's the oddest sort of comfort to know that there are others who are who are having emotional snaps as well.  Elaine, your office bully sounds like an A-hole...I love American Idol and have fun talking about it.  His reaction was ridiculous.  I wish I could have been there.  I would have said something to make him cry...or kicked him...maybe both.

    Susan, geat news about your tumor markers!  You also reminded me that while we all have bc, there are so many different ways we "have bc", if that makes any sense.  So many different treatment protocols.

     Jeanne D--I would a stop by the March Rads thread as well.  For someone like me, I just recently started rads, so I haven't gotten any se's (so far) that may or may not develop until a bit further down the line.

     Also, I ended up with dental issues.  I have to see a dentist this Saturday, but I also was told by my onc to have bloodwork done beforehand as I'm anticipating that they're going to have to do some extensive stuff.  Not looking forward to that, but I am looking forward to having some stuff done to my teeth that I had been putting off because of the chemo.  Yep, I haven't been the best caretaker of my teeth, I'm embarasssed to admit...but all of this has given me more of a sense of duty to take better care of myself.

    I tell ya', I would like to get past this fatigue/chemobrain/chemopause phase.  I had to laugh at one point when I got hit with all three at the same time:  Had the energy and motivation to get some bills paid finally, but literally got stumped on what year it was and then blanked on how to figure out what year it was...and then got hit with this huge heat flash.  So I sat there with my checkbook, wet with sweat and zoned out.  I just shook my head and started laughing.  I knew there was some sort of joke parody of the Visa card ads that ended with the word "priceless", but I was too tired to think of one.

     Hope we all have an easy week of rads!

    Catherine

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Busymom-We are on the same schedule, I start my rads the 20th also, and also 5 weeks out of chemo. I have no idea what kind of bolus I am getting, I'll ask at my mapping on Thursday. I could have sworn I was told it was a "piece of plastic"...?

    Bethaib-If this is your first breakdown then you are doing pretty well, but don't try to be too strong, cause it will get you and it will be hard to come back.  Just ask me!   I have always considered myself going strong throughout this entire thing since it started last September. When I hold things in and they finally burst out it's not very pleasant and I feel it physically not just emotionally.  So let it out however you may need to.  I think talking about it openly, to whomever you can, definitely helps.  I finally told hubby a few days ago how completely exhausted and depressed I was, for some reason he just didn't get it all, even though he has been great with taking care of the house and our daughter, but emotionally I could have used a little more support.  But hey they don't really know if we don't communite exactly how we feel right?!

    Have a good week ladies!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Good morning gals.  Welcome Marymoir to our group!  If you have to go through rads, this is a great group to be going through it with.  That big jerk of a manager is not in the office today thank goodness.  I exercised after rads yesterday and took all my frustration out on the machines.  I noticed earlier this morning that I was feeling a little dizzy.  Has anyone else noticed this?  I'll be 5 weeks out of chemo this coming Thursday and wonder if some of the aches and pains I'm still having could still be attributed to it. 

    Mary, I was anemic during most of chemo so I had a lot of shortness of breath.  It's very frustrating.  It's better now but I am finding myself getting worn out faster since I started rads.  But still, it's much easier chemo ever was.

    Have a great day ladies!! Hugs, Elaine

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Elaine-I still get dizzy every now and then, I don't think the chemo is out of our body yet for a long shot.  I also heard that rads will cut down your white blood cell count , but not as much as chemo , thank goodness... are you getting your blood checked regularly on rads?

    I got out and walked again yesterday and man do my legs hurt. It feels pathetic to be so weak!

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  • KATIEKAY
    KATIEKAY Member Posts: 37
    edited April 2009

    Hi Ladies:  Started my first rad yesterday, 36 more to go. I thought to myself this is a breeze, then when all done in the parking lot the tears started flowing and i really lost it. Don't want to go back today, but i know I will again and again. Good Luck you all. Susan Love your sign.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Susan, they haven't mentioned anything to me about getting my blood checked.  I do see the rad doctor every Tuesday so maybe I'll ask him about it today.  I'm tired though... I don't know if it's physical or emotional.  To make matters worse, my dentist referred me to an endodontist that I am scheduled to see today at 11.  Apparently one of my past root canals/crown might be causing a problem now.  I'm not thrilled about it but I guess at this point if I can fight cancer, a little tooth problem isn't going to get me down! 

    Someone in a prior post mentioned chocolate swirl ice cream... Yum!  I haven't been able to get enough of chocolate ice cream lately.  That's probably what's been bothering my tooth.  hehe

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  • kjbell
    kjbell Member Posts: 974
    edited April 2009

    Busymom-my last chemo was March 13 and just now my nails are showing the signs of the taxotere. 2 will fall off and the 3rd one is iffy but headed in that direction. Do they fall off on their own of does a doc take them off? OOOWWW!

    To all the gals just starting rads. I too was nervous in the beginning. When I went for the mapping, I thought I was going to have a nervous breakdown. But I just started my 3rd week and so far, so good. Beats chemo!

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited April 2009

    1 down, 32 to go! LOL! This was rather easy, it's really just a pain to have to go there everyday, luckily for me, my radiation center is about 5 minutes from my house. Good luck everyone starting rads this week.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Caroline - Doesn't it feel good to get it started?  I've got 11 down and they do seem to pass quickly.  You're so lucky to have such a short drive! 

    Dang it, I had to have a root canal done today.  Talk about emotional meltdowns.  As I was sitting in the chair having my tooth drilled, I thought I was going to lose it.  After I left the office and called my boyfriend and heard his voice, I totally lost it.  It was a good cry but very draining.  I figured after everything I've been through that a root canal wouldn't be so bad, but it was the icing on the cake for me.  Believe it or not, I can't wait to go to my rads appointment this afternoon so I can see the friendly faces of my rads tech and radiation doctor. 

    Kjbell, I have no idea about the nails falling off.  I did 4x of Taxol and didn't have a problem with it (thank goodness!).  But what I've heard or "read", is that they get so painful that you have to go to the doctor to have them removed.  Ouch!  I hope yours will hang in there and stay put.

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    kjbell-I had taxotere also, my nail are sore and there are some dark spots on them, but I'm hoping they're going to stay put. That'll just be one more fine thing to deal with!

    I feel like you all are going to be almost done, and I'll just be starting.  I'm anxious to get the show on the road!

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  • malyssajon
    malyssajon Member Posts: 43
    edited April 2009

    I had my first one today, 24 to go, and it definitely was a breeze compared to chemo. It was just uncomfortable holding my arm back for 15 mins of it.

    I've had trouble with my two big toenails turning black and starting to fall off, and I finished my last taxol Jan. 16th. So now I have two toenails that have part nails on them as I can't get the rest of it off. I'm going to wait before I get a doctor to take them the rest of the way off, maybe when radiation is over.

    Glad to be part of a great group!

    Linda

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  • BrittaA
    BrittaA Member Posts: 56
    edited April 2009

    Hi everyone,

    Just want to wish you lots of love and strength for your upcoming treatments. I'm a cancer survivor myself and dealt with cancer again when my father was diagnosed. I've started a blgo as a resource for cancer patients, and I just did some posts on radiation treatment side effects (http://blog.cincovidas.com/what-you-can-expect-from-radiation-treatments), what products to use on burned skin (http://blog.cincovidas.com/oucchhh-products-to-help-cool-and-soothe-painful-radiation-burns) and what to eat to lessen damage from radiation (http://blog.cincovidas.com/yummy-indian-food%e2%80%a6did-you-know-it-can-reduce-skin-damage-from-radiation).

    Love,

    Britta 

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  • busymomof5
    busymomof5 Member Posts: 25
    edited April 2009

    Wow. I just logged on so much news. Welcome Marymoir! I like to run and was looking forward to starting but I am also still a little short of breath. It was really bad at the end of chemo but seems to get better everyday. I ended chemo on March 16th. I played 15 holes of golf today and walked and carried my bag. There was definately a lot of huffing and puffing but I could not have done that 2 weeks ago so there is improvement. 

    Kjbell-my nails were discolored during Taxol and sore. It wasn't until 3 weeks post chemo that I had to have one removed. It was infected under the nail. I had a surgeon remove it. I have 4 others that are iffy and I am so afraid that they will get infected too. After all I have been through I really was angry that this had to happen too. It really hurt once the block wore off. I Purell my other nails like I have OCD. The doctor, onc, did tell me that some people's nails fall off. I don't want that to happen either. I have lost enough body parts!

    It sounds like people are having a hard time with the first radiation. I have my first on Monday, the day of the Boston Marathon. My daughter is running the first half as a fund raiser for her school. I go to it every year. She has run the last 3. I may get a little emotional as I am being radiated as I would much rather be at the marathon. I ran it, the whole race, several years ago. It seems like a lifetime ago...and like another person did that, not me. I guess I am having a little identity crisis. I think I will bring my husband to my first radiation. He went to every chemo. I am lucky because he works at the hospital next to Dana Farber.

    Good luck to everyone this week.

    Ann 

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  • marthamm
    marthamm Member Posts: 16
    edited April 2009

    Hello Everyone -

     So I've only had 4 rads and I'm already in pain from the burn - it almost feels like a heat rash since it's almost kind of itchy - not sure if this is normal? And oddly it's only on my upper chest collar bone area, very bizzarre, my other radiated areas seem to be hanging in okay.

     Any one have good tips to help me out or any words of wisdom? I'm already applying aloe vera and don't know what else to do to minimize the pain.  Of course I met with my doctor yesterday before this really started being an issue.

     Martha

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Had my rads simulation today and came home with my chest and side marked up like a road map with permanent marker. Each marking has a plastic sticky over it to keep me from accidentally washing it off. I was uncomfortable physically for the whole procedure, and was a little freaked out by all the lasers flashing and the sound of the x-ray machine and being alone taped to a table while it was all going on.

    I decided to occupy my mind by repeating Bible verses and singing songs of praise to God. I don't know what the techs thought, but it helped me get through.

    At the end, I learned that I have to have another rads simulation on Thursday, because the rad onc decided to increase the field by .5 cm. So that means I will start treatment on FRiday if all goes well.

    Tell me it gets better.

    Bette 

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  • Jane_M
    Jane_M Member Posts: 1,549
    edited April 2009

    Ladies having dental work:  Please be very careful that your dentist prescribes antibiotics if warranted.  I ended up with cellulitis of the chest wall last October caused by a dentist who sealed bacteria into a tooth and then did not prescribe antibiotics.  Both my med onc and bs said the dentist was grossly negligent.  I called 2 lawyers about malpractice and they both indicated that it was not in their best interest to take the case because I would probably die before the case got settled.  However, the statute of limitations in 3 years, so, if I died before October 2011, my family can file a wrongful death suit.  Nice, huh?

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  • bethaib
    bethaib Member Posts: 125
    edited April 2009

    Wow so many posts! 

    martha- I am on day 2, I just noticed what appears to be a bubble kind of thing near the middle of my chest but just off to the other side of the side they are supposed to be radiating. It looks like what I used to get when I stayed in the sun way too long.  So I will have to keep an eye on that. I have felt very warm and am getting quite a bit of irritation/soreness where the new sports bra hits me (shoulder to armpit area). 

    My doc told me to apply cream from my collar bone all the way down to three fingers under my breast area and from the middle of my chest to my tatoo past my armpit. A sizable area to apply cream to two to three times a day. Have you been applying cream that high?

    I'm afraid I can't help with the pain issue but hopefully someone else has some advice. Does the Aquaphor help as it is more like vaseline?

    Ann- you are running your own race...so don't feel too badly about missing the Boston one this year, you're just doing it a little differently. Glad you have your husband for support...sounds like he has been there for you through all this so far.

    Sounds like the nail side effect is a bad one for quite a few of you...sorry : (    

    Linda- I had to smile when I saw your picture. I have the same one hanging above my desk at work. It mysteriously appeared in my mailbox at work one day. I think my sister left it for me. That was before the bc dx, ironically.

    Lainey- I think a meltdown about a tooth problem at this point is expected. After everything you have already dealt with, this is one more thing, and I think at some point we just can't deal with one more thing. I hope the root canal fixes things for you...and keep enjoying the ice cream if you can!

    Welcome Katie- seems we had a similar experience on day 1.

    Day 2 for me went a little better. I was still pretty nervous when I was getting the first "beam(s)", but once they moved the machine and it finished up I was calmer. It was weird, I got the hair standing up on my arms thing again today..today I noticed it on both of them. I am still pretty warm to the touch on my rad side 5.5 hrs later. Feels very hard near my lumpectomy. I seem to be developing a sinkhole as more time goes on since surgery.

    Having a very hard time bra searching. I am not sure I will be able to continue to wear the ones I found due to the irritation I am already experiencing...and I was happy I found them too...the front zipped up and I thought it would make it more comfortable to put on. But I noticed it shows under the clothes too much due to the straps being closer from the T-back styling the sports bras have. To find something without wire is tough enough, but then to find anything in the size I need is impossible. Unfortunately I need support. I found I had to go up two sizes in the sports bra to begin with and the band was just a bit too large, but at least I didn't feel like it was too tight on the breast.  I tried going up a cup size in a regular bra as I was told to do, but they don't fit at all. Anyone have any ideas/suggestions?

    Goint to read a little and try to veg...night ladies....

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