December 2009 Rads Group

Options
1…89111314…40

Comments

  • DancingDeb81
    DancingDeb81 Member Posts: 11
    edited January 2010

    Hi Everyone

    I just started reading your post.  I have had 18 rad treatments with 12 more to go.  I don't have any redness or burning.  But I've lost range of motion and have pain under my are.  Seems like a tendon is pulling and I can't straighten it.  I wonder if it's the radiation or did I do too much during the Holidays.  It feels just like it did right after my surgery.  Lumpectomy and 8 lymps removed.  Any thoughts? 

    · Share on FacebookShare on Twitter
  • christina58
    christina58 Member Posts: 10
    edited January 2010

    Hi Ladies This may be my first post to this group, but I have been reading it everynight for weeks.  I have to say thank you because you have all been helping me through this treatment.  I only have two treatments left, and this group has helped me through many sleepless nights...the docs should tell patients to look here for helpful info and support, I learned more here than anywhere else.  But just because chemo and rads will be in my past, I doubt I'll be going anywhere anytime soon.  Next is the wait for tests to see if it all worked, and I'm sure I'll be looking for someway to not think about it every second.  Well. I gotta get going, a carbon fiber table and sexy gown are waiting. Have a great Monday all.

    · Share on FacebookShare on Twitter
  • Beggy
    Beggy Member Posts: 31
    edited January 2010

    Hi Dancing Deb--so glad to hear you're past the halfway point with your rads. What you're describing sounds like "cording" to me.  Renee gave a detailed explanation of this on 12/22 and it sounds like this is what you're experiencing--here's what she posted:

    # Cording occurs as a result of the lymph glands and lymph channels being removed from your axilla region or armpit
    # Cording often shows itself as a palpable tight and painful band of tissue (like a cord - hence the name) running down the arm towards the hand
    # Cording can be felt at any part of the arm (Marjory had pain and tightness down the back of her arm but I've heard of other women who feel it in the forearm or around the elbow)
    # Cording is a kind of soft tissue tightness usually seen in the axilla.
    It can extend from the mastectomy or lumpectomy or even the drain scar down the arm to the wrist. It is painful and can sometimes recur. The pain of cording can settle in a few weeks or can last for months
    # Some physical therapists say that the cords can be stretched or massaged and that this can lead to an immediate improvement in range of motion and a decrease in pain. Some women say that massage is too painful to tolerate
    # Cording is probably due to changes in the arm's lymph vessels and can appear six to eight weeks following surgery or even months afterwards.

    Many surgeons don't tell women about this, like they don't tell you about lymphdema or about the need to do exercises for the arm on the affected side.

     Hope this is helpful!

    · Share on FacebookShare on Twitter
  • adrienne2
    adrienne2 Member Posts: 183
    edited January 2010

    Renee, after hearing your story, my troubles seem so small. I was going to say that I'll never complain again, but well, we both know that's not true :)

    You're been through so much, and you are handling it with style and grace. Wow. I am so impressed. I hope most of your problems are behind you: you deserve a long, long time of peace and joy.

    I'm glad to hear that your armpit feels better. And yes, the end is in sight.

    Lissette, you are almost done with rads, girl!!! I know that you have kicked cancer's ugly butt.

    Jeannette, thanks for sharing your cream recipe. That is so nice of you. I'm glad that it cleared up your infection. Love the zombie photo :)

    Somanywomen, you are almost done with rads. I'm ready to start the celebration with you. 

    Thanks for the book recommendation.

    I'm so glad that the itching is gone, but sorry to hear about the tenderness. Regarding scars, mine are still lumpy, but definitely not as lumpy as before. There's some tenderness in several places, plus the burnt skin is tender. The SNB scars are still annoying me a little, and rads seem to be making that a little worse. All in all, though, I don't have much to complain about right now. It's all small stuff.

    DancingDeb81, welcome to the group. Congratulations on being almost 2/3 done with rads, too. Sorry to hear about your arm pain. I don't have an answer about the issues you are having, but I see that Beggy has posted some really good information. Have you been doing regular stretches since surgery? 

    Christina58, I'm glad you decided to join us here. Only 2 treatments left? Wow -- congratulations! I laughed at your mention of the carbon fiber table and sexy gown :) 

    Beggy, thanks for posting the information about cording. My surgeon said nothing about it, and he totally downplayed the idea of lymphedema, saying "that won't happen." Interestingly, the nursing staff felt totally differently: before my re-excision, they put a red warning bracelet on the arm on the affected side, so they wouldn't use it for IV's, injections, blood-pressure tests, etc.

    Fortunately, the hospital staff gave me a binder full of information, including stretches to maintain range of motion, signs of lymphedema, etc. 

    Me: After a refreshing break on Saturday, last evening the burning sensations returned. I cut the left breast area out of my oldest, rattiest t-shirt, so I can leave my breast exposed to the cool air in the house without getting myself too chilled. It looks pretty funny, but it works. I used a hand-held fan, too, and that helped. Last night was the first time the burning sensations interfered with my sleep. I did finally manage to get to sleep, though. It's hard not to worry about what the next 22 treatments might bring, but I'm trying to take it one week at a time, telling myself that I just have to get through the next 5 days. 

    Good wishes to you all. May you have an easy week.

    adrienne

    11 down, 22 to go 

    · Share on FacebookShare on Twitter
  • DancingDeb81
    DancingDeb81 Member Posts: 11
    edited January 2010

    Beggy

    Thanks for the info, it helped me know what's going on with my arm.  You're right, the surgeon didn't say anything about this.  I showed it to my rad. oncologist and he said if it didn't get better then he'd send me for physical therapy.  Why don't they give us the info that we want?   

    · Share on FacebookShare on Twitter
  • Beggy
    Beggy Member Posts: 31
    edited January 2010

    Renee gets the credit  for researching and posting the cording information--it just goes to show you just how many things can and do go wrong.   I guess if they told us every potential side effect, it would scare the crap out of us--as if we don't have enough reasons to be terrified in the first place!  I honestly believe that at times, the ladies in our "sisterhood", the  nurses and the para-professionals have more useful information to share with us than the doctors.  

     12 down, 16 to go!

    · Share on FacebookShare on Twitter
  • Jules824
    Jules824 Member Posts: 85
    edited January 2010

    Thanks for the info on the negative hormones and thanks for the info on the books.I appreciate it so much. 

    I think stress plays a role in every health issue.  

    Im glad some of you are soon finished. I have 5 more.

    Boy Im really getting worried, my stomach is bad again today and now I have diarrhea too. I sound like a hypochondriac but I am going to ask them to take pics of my stomach. This is not normal and is going on off and on for weeks. They say ulcers but I had ulcers in my 30s and did not have diarrhea.

    Take care everyone

    ((hugs))

    Jules

    · Share on FacebookShare on Twitter
  • somanywomen
    somanywomen Member Posts: 872
    edited January 2010

    3 to goooooooooooo..............and guess what???...I ask two different doctors (Rad doc, actually came out of hiding my last week and saw me today and then appt. with Onco doctor) the same question about the knot (hard area where sentinel node taken) and surprise, surprise if I didn't get two different answers ....Rad doc says it is hematoma and body would eventually dissolve it....Onco doc says it is fibrous band caused by surgery...assures me it's not more cancer.....I swear if I hadn't read so much and listened to all of us somanywomen I don't know where I would be....Why can't I get a straight correct answer about anything....Do they really not know??

    They only want to tell us anything when we pry it out of them with our side effects after the fact!!!...It's not like they haven't heard these same questions over and over ...I mean it's only one in six women who are facing this crapolla......We have to be our own doctors about this and learn as much as we can and not except these rehearsed answers that they give, like they have never had that question before .....give me a break.....Rant rant rant, sorry!!!!

    Welcome christina and dancingdeb.....to my night of rants....

    Adrienne, yes itching is almost gone.....and can you tell I have had my two glasses of wine tonight??

    To all....please look at the book I mentioned above "Foods to Fight Cancer" ( previous post)....get it on amazon, less than 14$....best sensible book yet on foods with lots of good info.......

    · Share on FacebookShare on Twitter
  • angelsabove
    angelsabove Member Posts: 363
    edited January 2010

    Unkle....I am responding to your earlier post....As you can see I had 3 positive nodes and yes I am taking radiation, and yes to the clavicle area. I just completed #14 today. I did see radiation oncologist today and he said the plan is to do 30 treatments.

    May God Bless  

    · Share on FacebookShare on Twitter
  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2010

    Hi, all,

    Just FYI, here's an information web page about "cording" or Axillary Web Syndrome, because information can be so hard to find:

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    Be well!
    Binney

    · Share on FacebookShare on Twitter
  • christina58
    christina58 Member Posts: 10
    edited January 2010

    Good Morning Ladies...Good Morning Sunshine...talked to the doc yesterday and he added 5 more to my schedule, I forgot about the damn boost. 6 more...I had to add a bit about cording since I had it so bad under my arms I didn't have armpits...stretching does help.  I went to p/s about a month after my surgery but I only went one time, I took the paperwork showing the exercises and did them at home.  I took a pain pill (percocet I have for my back), waited about an hour for it to kick in and stretched until I cried.  I also did a lot of massage, my onc told me it would break up the tissue...I cursed her at first because it hurt so bad, but it did work.  Yipee, now I have armpits.  Well, here's to making it through the day..again..

    · Share on FacebookShare on Twitter
  • Jules824
    Jules824 Member Posts: 85
    edited January 2010

    Just wishing you all a nice day. Still not feeling well in the stomach, going to request tests. I have four more to go in boosts then finished.
    ((hugs))

    Jules

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Hello everyone!

    The hole the surgeon made to drain my seroma is getting smaller. YEAH! I see her again on Friday. Yesterday I noticed that some of my sharpie marks came off with the tape they put over them, so I got tattoos. Just another battle scar to bear. Not happy about that. No idea when I start back on the rads. Everyone here will be done and I'll be starting all over.

     I believe stress does a lot of harm to us. My family doctor believes that it has brought on the cancer. I don't know whether to believe him or not, but it does make sense to me. I deal with a lot of it. Who knows what brought on the cancer. I don't have a family history of it. Maybe its because I am a female and that's the only reason.

    Hope everyone is having a great day and keeping warm.  The snow looks beautiful outside.

    · Share on FacebookShare on Twitter
  • adrienne2
    adrienne2 Member Posts: 183
    edited January 2010

    DancingDeb81, I hope you are feeling better today. I'm beaming good wishes your way. As to your question about why they don't give us the information we want, I'll say something about that later in this post.

    Beggy, I totally agree about getting more info from here and from non-doctor medical personnel than from doctors.

    Jules, I'm so sorry to hear that you are still having stomach problems. How annoying to deal with that and rads at the same time. Only 4 to go? Happy days are coming for you.

    Christina58, too bad about the surprise additions to your schedule. At least you'll get to wear that "sexy gown" a few more times :)

    Thanks for sharing your experience with cording and how you got rid of it. I admire your strength in stretching through the pain.

    somanywomen, I had to laugh when I read your rant. Don't get me wrong, I agree with you, but it's one of those things that is so true that I just had to laugh at it. I, too wonder just why there seems to be so little information freely given. 

    But... 3 to go... you must be getting pretty excited to be done.

    Thanks for the book recommendation, too.

    Binney4, thanks for the link to the info on cording. 

    Veggy, how wonderful that the hole is shrinking already!!! You'll be healed up in no time. Regarding tattoos, I wasn't keen on the idea at first, but it's such a relief to not have to worry about the marks coming off. Also, some people find that they're allergic to the adhesive on the tape, which wouldn't be any fun, either.

    Regarding your slow start, we'll be here to support you, whenever you start. However, if you don't get what you need from us, you can always join one of the newer rads threads, too.

    Update on me: I am soooooooo happy today. I'm sure you've read my whines about the irritation at my sentinel node incision site and the early burning sensations I've gotten from the rads. They've never been painful enough for me to think I needed to do anything about them, and when I did mention them to my doctor and nurse, they just told me that was normal. The trouble is, even though they are minor pains, they made it difficult for me to sleep: I can't find a comfortable position, the covers irritate the pink area, and the discomfort keeps waking me up.

    Well, last night I decided that this was too annoying, and I took a single naproxen sodium (Aleve). As soon as that puppy kicked in, the pain simply stopped, and I fell asleep in my chair. Last night I had the best night's sleep I've had in two months. Yay!

    So, after rads today, I asked the nurse if there was any reason I shouldn't take naproxen sodium, and she said it was perfectly safe to take it in the dosage listed on the bottle. Then she said it was an ideal choice, since the burning sensations are caused by inflammation, and NS is anti-inflammatory.

    So... why the heck don't they tell us stuff like this in advance? I could have been pain-free and sleeping well all this time. Part of the blame is mine: I should have thought of this earlier. However, if this information had been in the handout, I wouldn't have waited.

    This is the end of my whine for the day :)

    Those who are done with rads, I hope you are healing up quickly. For those not yet finished, you are now one day closer to the end.

    adrienne

    13 down, 20 to go 

    · Share on FacebookShare on Twitter
  • steeny107
    steeny107 Member Posts: 85
    edited January 2010

    DancingDeb 

    I have the same thing, and went to PT and a Lymph specialist, it was amazing how the stretching exercises that she taught me really improved the range of motion as well as the pain after two visits.

    Basically I have a 3/4pvc pipe 41inches long filled with sand and I lie on my back hold it with my hands in line with my shoulder and keep my arms straight and let my arms go back above my head.  Hope that is understandable, anyways I do 30 of them 3 times a day and oh it feels so much better when I keep up with it. If I miss a session I can feel it tightening up.  I have 7 more radiation sessions left.

    Good luck 

    · Share on FacebookShare on Twitter
  • BonnieSF
    BonnieSF Member Posts: 101
    edited January 2010

    Wow! So many new folks on this thread! Welcome!

    I'm too tired to write much, but I wanted to welcome you and also say Hey! to the 'regulars'! Some of you have just finished: Lisette and Somanywomen: you are DONE??!?!?

    I had #24 of 30 today. I'm feeling scorched and weary. But the end is in sight. CAN'T WAIT!

    Bonnie

    · Share on FacebookShare on Twitter
  • mimi1964
    mimi1964 Member Posts: 2,163
    edited January 2010

    Welcome to all the newbies on the thread!!!

    Lissette - Congrats on being done... I'm doing the happy dance for you!!!!!

    somanywomen - I to laughed at your post/rant.  It was a bright spot of my rather dull Tuesday.   Only 3 mor txts to go?

    Jules - you are almost done as well... We are going to have to have a celebration!

    Veggy - glad to hear you are finally starting to heal!!! I hate my tatts for rads!  I absolutely did not want them but I was not given a choice.  That is all they do where I go, no markings with sharpie or tape.  Funny part is though I still get a paint pen mark (just one) they say it is to help with alignment and they remark it every other day.  

    Bonnie - sorry you're burned and weary, but I do know how you are feeling.  It stinks!

    Adrienne - I'm sorry that your burns have been keeping you up., I 've had some of those sleepeless nights where my under arm burn woke me up hurting.  Thanks for the info on the Naproxen Sodium... I may have to give that a try.

    Me - I have started getting the raised red looking rash that somanywomen has.  It is not itchy, but looks angry!  The burn in the deepest part of my under arm is now turning blackish in color and the outer edges are still firey red.  It looked a little better yesterday but after 2 days of rads and getting re-burned (is it a word?) it looks bad again.  My nipple is burned today and a little irritated and I have a small area underneath my breast that looks like it may be going to give me some problems (I pray not).  So far I have tried 3 different creams (today I used some Silvadene cream for burns that I have had a while) so I am going to see how the Silvadene does for the burn.  The Regenecare works for the pain because of the Lidocaine.  

    I completed #22 out of 38 today... Only 6 more full txts and then 10  boosts!

    Renee

    · Share on FacebookShare on Twitter
  • lissette80901
    lissette80901 Member Posts: 62
    edited January 2010

    I'm finished!!! I can't believe it. It feels like forever but at the same time I can't believe I'm already done. I'm pretty burnt and my fipple's withered but I made it and worked through it all! Wow! I just hope my implant holds up and I don't get scar tissue. Nurse told me to put on tons of aquafor and I will.

    Thank you, thank you, thank you for getting me through. I'll stay on here, of course, until we're all done. You can all do it! Whew!

    About cording: I had it bad. Did phys therapy and it helped. But then I had my exchange surgery and it was gone! Funny thing was docs all told me they didn't know what it could be.

    BTW- I got my period today! So excited since I don't have kids and doc said I may or may not get my period again. 12 weeks after chemo and it's back! Guess I need to start looking for a sperm donor. Lol. Really, I'm just hoping the facial hair'll thin. ;-)

    One more down ladies! You can do it!

    · Share on FacebookShare on Twitter
  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited January 2010

    Lissette congratulations on being finished! I hope your burnt bits soon heal up.

    I'm sending good wishes to all of you still going through treatment. You are getting there.

    · Share on FacebookShare on Twitter
  • somanywomen
    somanywomen Member Posts: 872
    edited January 2010

    Adrienne, I am so impressed with how you remember everyone's post and reply to each...I try, but I am still  using my son's laptop and with no mouse, I haven't got the finger moves...I want my mouse back...My computer (2cnd one of my son's hand me downs to break in 4 months)...so last nite he and my husband went on line and all I wanted was a cheap replacement, well that's not what I am getting, we (they) decided to get a refurbished 20" (I will be able to read without making the font huge) IMac from Apple, got to pick out a new free printer with it.. One of my previous hand me downs was a Mac and I really liked it...This is my once a year gift, valentines, mothers day, birthday, ground hog day, etc,,.....

    I forgot to mention during my rant the other evening that while I was at my Onco doc, that he asked me if I had starting my hormone (drug) treatment???..Well, what did he think, that I could write my own prescription??...He has me scheduled for blood work today for tumor markers, curious as to what those are, I guess they check every 12 weeks, anybody know more??...Also I am seeing Nurse to explain the hormone treatment, hopefully she will be honest and forthcoming to give me the truth!!!...I will have my 2nd to last rad today in between these appts....

    To All, who's already on hormone drug, which one? and what se's are you experiencing??..Sure will be interesting when we all start our hormone treatment posts to see what else our doctors have left out!!!

    Jules, sure hope you get some relief, maybe after rads...things will get better..

    Tomorrow is my final rad!!!!...We are joining my sister and her husband at a place called Capt. Hirams in Sabastion Florida (about a 30 minute drive south on me), they got tickets to see "Eddie Money", Two tickets to Paridise singer.....I can't believe the timing, being my last day of rads and finally get to do something that has nothing to do with doctors or treatments...Yippee..Anyone else want to join us, first glass of wine is on me....

    · Share on FacebookShare on Twitter
  • adrienne2
    adrienne2 Member Posts: 183
    edited January 2010

    Lissette, you are done with rads!!!! I'm dancing, dancing, dancing for you. Happy, happy, joy, joy.

    It's really interesting that your cording disappeared when you had your exchange surgery -- and no one had any idea what caused it... sure.

    Congrats on the return of your periods. I know you won't have any trouble finding that "sperm donor" you mention -- you are gorgeous, and more importantly, you are a sweetheart.  

    Never joke about facial hair to a post-menopausal woman Laughing 

    I hope you heal up quickly and that this experience becomes a dim memory.

    Steeny107, welcome to this thread (at least, I think you're new). Thanks so much for describing the exercise you do. That is really helpful. How cool that it is doing the job for you.

    Bonnie, I'm sorry that you're so tired. Is it fatigue from rads, or are you just out partying late at night? :) Only 6 to go: that is wonderful. I'm thinking of you every day.

    Renee, I hope that rash doesn't give you too much trouble. Between that and your underarm, you must be quite a sight. Have you taken any photos? No, I'm not asking to see them: I'm just thinking that you might find them interesting later. I've been taking photos of myself, and keeping a kind of rads journal. I don't know why, because I doubt that I'll ever share it with anyone. Maybe it's just a way to try to maintain some control in a situation where I actually have very little control.

    Regarding the Naproxen Sodium, it's not a really strong painkiller, so it may not completely stop the pain, since you are further along in treatment than I. However, it might help some, and anything that helps is good. I got quite a bit redder after yesterday's treatment, and the usual places started feeling burny again. The NS wasn't totally effective for the pain, but when I woke up this morning, my nipple wasn't nearly as red as it was yesterday. And I have the photos to prove it :)

    Congrats on finishing #22.

    somanywomen, I'm post-menopausal, so I'm not "remembering" everyone's post: I have to keep two browser windows open and switch between them :)

    I laughed out loud at your thoughts when your onco doc asked if you had started your hormonal treatment. That is too funny. 

    Only one rad treatment to go??? Super! That finish line tape is right in front of you. I'll drink a glass of wine with you, but I'll have to do it from here.

    Good luck to everyone. 

    adrienne

    13 down, 20 to go. Getting #14 today. 

    · Share on FacebookShare on Twitter
  • RunswithScissors
    RunswithScissors Member Posts: 323
    edited January 2010

    Congratulations ladies! Counting down and finishing up is a great thing. It almost feels strange the first day you don't have to go back for treatment!  

    I feel a little better hearing that others have the black spot.  I had never heard it mentioned and thought maybe I was over cooked because of the higher dose when I asked to speed things up. Yikes, that came out wrong! I'm not glad you have one, too, I'm just relieved to know it's not unusual. 

    I am sad to report that the doc was wrong (surprise) when she told me SE's would peak at about 5 days after the last treatment.  I was fine until day 12, when all hell broke loose.  Out of the blue my skin under the arm ripped open - it looks like someone slashed me a few times with a knife, and then the skin spread apart about 1" or maybe more. Soooo creepy looking! 

    It was weird. That morning, my dogs came up on the bed to greet me, as is our usual ritual. Every single one of them (I have 3),  did a double take on my armpit - sniffing at it.  I thought it was strange and mentioned it to dh, who made some joke about BO.  So I  got up, got busy and forgot about it. Then in the afternoon I had a lot of sudden pain under there. When I reached under my shirt to feel what was going on - I discovered the torn skin.

    The nipple appears to be next - I see the raised inflamed areas you've mentioned, and the peeling is starting. 

     Yell !!!!  I brought out the pain meds last night, and that helps.  I am happy that I had time to get my house cleaned up before this started.  What a mess things were after nearly of year of treatments. It was kind of overwhelming, but I used the Flylady site to help me tackle the chores in small bites. (Anyone else familiar with her?  She's a proponent of using timers to help you get past procrastination... doing something like clean the kitchen for 10 minutes only.) Anyway.... now I'm not doing much again. 

    I had stopped doing the compresses when tx finished, but I was continuing with the cream. Oddly, the worst spot is the deepest part of my arm pit where the cream would clump up. It was very moist in there, and I think that might have contributed... but who knows for sure. 

    Jules, I do hope they get to the root of what is causing your stomach trouble. It's hard enough to have the localized pains - stomach issues really must make things hard.  

    · Share on FacebookShare on Twitter
  • Jules824
    Jules824 Member Posts: 85
    edited January 2010

    Lisette congrats on being finished. Way to go!

    To everyone who is new welcome!

    I cannot remember to post to everyone so please forgive me. I did catch up reading and I hope and pray those with side effects feel better soon. Im sending out prayers and good vibes to all of you!

    I saw the surgeon today and he blames the stomach issues on rads. Rads blames it on ulcers. (go figure) If it doesnt clear up (surgeon gave me scripts) I need scope testing on my stomach etc.

    Otherwise I have 3 more to go!!!!!!!!!!!!!! And my "diagnostic" mammo is set up already for August and I will see the surgeon in Sept after my mammo.

    I CANT WAIT TO BE FINISHED!!!!!!!!!!!! Did I already say only 3 more to go????? LOL..

    Take care 4 now.

    ((hugs))

    Jules

    · Share on FacebookShare on Twitter
  • BonnieSF
    BonnieSF Member Posts: 101
    edited January 2010

    Runswithscissors! Good lord! Your story sounds horrible! I'm so sorry you're going through that. I was planning my recovery based on your experience. Uh oh!  Please keep us posted on what works and what doesn't.

    Today was my #25, and tomorrow starts the first of 5 boosts. Also today, skin peeled off in the shower! :( This is the skin on my chest right under the breast, which is also the area that will be hit with the boosts. Saw the doctor and he said the only thing he could do was delay treatment if it gets worse. Worse!  After reading about Runswtihscissors is going through, know what worse is. Egad. 

    Just booked a flight to Key West for a week in February. My post-treatment present. Hope I don't have 1" wide slashes under my arm. :(

    Good luck everyone! 

    Bonnie

    · Share on FacebookShare on Twitter
  • tbaker59102
    tbaker59102 Member Posts: 6
    edited January 2010

    Thanks to all who responded to my question about sending thank yous to my cancer team. I still haven't decided exactly what to send, but will definetly send something. I did finish my RADS on 01/08/09 and started taking Arimidex the very next day. Didnt notice any se at first...started noticing I was a little warmer than usual yesterday about 4 days into it. I too feel wierd about "taking drugs" for 5 years, but plan on doing it anyways. From everything that I've read and heard from the onc, it sounds like the right thing to do to stop the cancer from continuing or coming back. So far the "hot flashes" (more like constant heat than flashes to me) are not bothering me much. I have been hot for about the past year anyways (not in the cool way if you get my drift) so I am experienced with the sensation. I will see my onc on the 28th to talk to him about how I am responding and get some blood work done. If anyone knows the routine of seeing the onc after RADS and wants to post it here I would be interested to know what to expect. I specifically want to know why they take blood and how often.

    As far as the RADS se's for me: I now have a tanned square around my left breast with a sun burned area inside of that approx 4" squareish that was from the final 8 tx - boosts they called them - targeted at the "tumor bed". I still feel a little itchy at times, but not as bad as when they were doing it daily. I used a cream called Xclair that I was given samples of from the doc. I also used Cortizone 10 plus. Both of these items I applied twice a day - the cortizone first then the Xclair and feel like I escaped with little damage. I also used Gold Bond Ultimate Comfort Body Powder through out the 33 tx mostly because of the no deodorant thing. I found that I really like this product and plan to use it from here on out. I am one of those 70's children that used to be sort of "natural" and this product reminds me of those days. Even though I have heard that antipersperant dont cause bc - I am still a little suspicious and am going to try to avoid it as much as possible.

    Best wishes to all and look forward to reading more of your experiences and posting mine. Arimidex is one of my new friends - just like all of you.

    · Share on FacebookShare on Twitter
  • somanywomen
    somanywomen Member Posts: 872
    edited January 2010

    tbaker, it'a arimidex for me also..found out today after rad appt...talked with my Onco's nurse, she was super...I had to sign the paper that's says I understand all of the possible se's....Good golly miss molly...Some are horrible, she said the most common is the bone/muscle problems and that almost 75% have weight gain the first 6 months...I have been eating so good, my anti cancer foods, which are extremely low fat, that it will have to be the drug if I do add weight....They took my blood today and my WBC count went from 6.90 12/09 to 4.09 01/10, a big drop, the norm range is 4.50-11.00, and my Neutrophils went from 4.47 to 2.83 with normal range being 2.0-7.8, had other changes, she said she wasn't concerned because this is normal to have drops after radiation...They also are sending blood out for tumor markers, said these would be checked every 12 weeks...I will be starting the arimidex next Monday, I am taking the weekend off to let my body recoup a little....Although I am post menopausal, I have never had a hot flash and not looking forward to them...But, like you said I plan to stay the course whatever it takes!!

    Runwithscissors and Jules, sure hope things get better for you...

    Adrienne, thanks for letting us know your secret of having 2 browser windows open, my nineteen year old does that but I don't have a clue....

    Jules, When I mentioned above that my Rad doctor says the hard knot under my sentinal scar was a hematoma and would dissipate on its own, then my Onco doc says it's a fibrous band caused by surgery, I can't wait to see what my surgeon says is, but I bet whatever he says will have absolutely nothing to do with surgery..lol

    Bonnie, I love Key West, was able to live there for about 4 months, just be careful, things are beautiful, but you have to be aware of things...wear your purse, don't carry it...Lock up valuables in safe, don't leave them in your room...Ask the locals where to eat, they know all the best non-tourist places...We just went down a few years ago and took my dog on vacation, they have a dog beach and lots of places where dogs are welcome, he had a great time....we did too!!

    ONE TO GO!!!!!!......hope it worked!!!!!..  

    · Share on FacebookShare on Twitter
  • mimi1964
    mimi1964 Member Posts: 2,163
    edited January 2010

    RunswithScissors - OMG I can't believe the pain you must be having with your underarm ripping open like that.  OUCH!!! I am now worried because my armpit is quite burnt and it is very deeply burnt much like yours.  I am applying the cream and cornstarch, that is what my RAD onc keeps preaching and thats what I do.  Hoping and praying it gets better soon.

    somanywomen - I'm ready to celebrate with you, crack open the bottle of vino!!! Congrats on finishing tomorrow!  As for the Arimidex... I can't afford to gain any more weight I'll weigh 200 lbs if I'm not careful... LOL!! All kidding aside, I'm already about 20-30lb over wt and I seriously hope it doesn't cause wt gain.  I've really given thought to not taking the drug at all, but then again I want to be able to say that I did everything I possibly could to keep this beast at bay!!! But in the same breath I'm not really willing to take 10-15 different other drugs or supplements to ward off the side effects of one little pill either... I don't think?  LOL!  Anyway I know that I will get at least a 3 wk reprieve from everything before I even have to attempt starting the drugs.  I don't go back to see my Med Onc till Feb. 23rd and I should finish up with my rads on 2/5/10.  

    Adrienne - I much like you am finding that I'm having a good bit of pain and it seems to be at night and now I am having difficulty sleeping.  Not getting very much of it and what I do get isn't sound sleep.  I am always conscious of my armpit and the burning pain.  Nothing really seems to help it.  

    Lissette - your fipple may be withered, but my nipple is burnt and angry looking.  My skin is starting to get a little tight from the burns.  Nothing ever has time to heal it just gets more burnt.

    Renee

    · Share on FacebookShare on Twitter
  • steeny107
    steeny107 Member Posts: 85
    edited January 2010

    Hi I am day 17 of 25 and my scar from the AND is starting to open up and I have loadsa blisters.  Was given Silverdome spelling not so good tonight lol.

    I have 6 more to go and will be so glad when it is over.

    I have a bolice put on for every treatment, anyone else get the bolice kind of like a gel filled square they put over the boob?

    Michelle 

    · Share on FacebookShare on Twitter
  • adrienne2
    adrienne2 Member Posts: 183
    edited January 2010

    runswithscissors, all I can say about your side effects is "Yikes!!!" and "Ouch!!!" It hurts just to read about it. I'm sure that it was a big shock, since you had been healing up nicely. How interesting that your dogs knew about your armpit trouble before you did. Thank goodness you had pain meds handy. I'm giving you a big, but gentle ((((((HUG)))))).

    Jules, I hope someone can find a solution to your stomach problems -- rads are hard enough to take when you're feeling good. Keep thinking "3 more to go, 3 more to go, 3 more to go." I know you are :) 

    Bonnie, having your skin fall off: eek. I hope it's not hurting you too much. I'm giving you a (((((((HUG))))))), too. I'm betting that you'll be all healed up for your trip. Key West will be a wonderful change, won't it? I love thinking of you enjoying the tropics.

    tbaker59102, I haven't finished rads yet, so I can't answer your questions about the after-rads routine. I'll be interested in what you find out, though. Thanks so much for telling us about your side effects after about a week, and how you took care of yourself during treatment: that's interesting, and it's encouraging to hear that you've healed so quickly. I hope your residual itching goes away quickly. 

    somanywomen, I'm so happy that you have only one treatment to go. Wheeeeeeee!

    I loved reading about your experience signing the permission slip: I had a similar experience with my radiation oncologist: when she described the side effects, she downplayed everything, making it sound like rads would be a walk in the park: some pinkness or redness, like a sunburn, maybe some itching. When it came to that permission slip, though, there were a lot of scary things I was agreeing to, including heart failure. Of course, I know that doctors are just protecting themselves, and that hopefully no one would have *all* those side-effects, but I did have to chuckle at the difference between what they say and what they had me agree to.

    Renee, I am hoping, hoping, hoping that your armpit burn won't get worse. Sorry to hear about your trouble sleeping, too. That sounds so miserable. Have you asked your doctor or rads nurse about pain killers?

    You're getting close to the end, and the 3-day weekend should be a welcome break. At least, I'm certainly looking forward to it.

    Michelle, I'm sorry to hear about the blisters, and especially your AND scar opening up. That sounds so painful. I will be very happy for you when you are done with treatments and can heal up. I don't know much about using a bolus, but probably someone here will. 

    Me: nothing new to report, and that's good. 

    adrienne

    14 down, 19 to go 

    · Share on FacebookShare on Twitter
  • lissette80901
    lissette80901 Member Posts: 62
    edited January 2010

    Hi ladies. It was so odd to not have to go to radiation yesterday! My skin is super tight, very dark with black spots. Ick! It hurts and is itchy. The nurse told me to lather on the aguaphor. I'm using that and the burn cream. I'll keep you posted.

    I went to the eye doctor yesterday because I've been having trouble with my contacts since chemo. Turns out my astigmatism got worse and I have some other minor issues. Nothing had changed for 7 years- it has to be the chemo!

    Sorry to hear about the peeling and blistering. Ouch! I'm sending you all good, healing vibes! One less to go- hang in there.

    · Share on FacebookShare on Twitter

Categories