July 2011 rads

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  • pejkug3
    pejkug3 Member Posts: 902
    edited August 2011

    I've received two phone calls from the rads center to (I assume) schedule my follow-up.

    I haven't called them back.

    I would be fine to never see that place again. 

    (Yeah, yeah - I'll call back.  But not until Monday.  I keep getting the message after the center is closed for the day.)

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited August 2011

    pejkug3:  I would be happy never to see my rads center again either.  I made my follow-up appointment on the day of my last treatment before I left the center.  Otherwise, the temptation not to return would have been too great.

    LindaJanette and Mimidi:  Congratulations on finishing rads.  I hope your skin heals quickly. 

  • GiGiL
    GiGiL Member Posts: 928
    edited August 2011

    Congrats ladies on being finished. I hope you heal quickly. I had my first boost on Friday. Thankfully it is on the opposite side of the major skin reaction. My armpit is almost completely peeled now. I am using the cortisone cream on it. J, you will get started again and maybe in the meantime your skin will get a rest.

  • LeeLee3
    LeeLee3 Member Posts: 40
    edited August 2011

    Lena- Wow, and last I was on here you were doing so well...so sorry to hear about your skin suddenly taking a turn for the worse, but very glad that your RO saw fit to promptly end it!

    Congrats to all of the others who finished up Rads this week as well!!

    I am a week and two days out of Rads and the one spot where my skin had broken down really bad is almost "healed" meaning you can only see a small section of pink flesh...  It was pretty much like my Rad therapists said and most of the ladies on here reported - it got a little worse, before it started to get better!

    To those still getting daily Rads - hang in there!!

    Praying for none to minimal SEs for all of us moving on to some type of hormonal therapy.

    Blessings to All!

  • Lena
    Lena Member Posts: 1,036
    edited August 2011

    Thanks all, and LeeLee, yeah, I found it pretty shocking to go so suddenly from "having the expected SEs but tolerating treatment extremely well" to serious radiation burns that had me and my Pack Rat both thinking "Hiroshima!" LOL. He was thinking maybe on my last treatment I'd gotten accidentally overdosed with too much radiation, so he told me to ask my RO, which I did (last Wednesday when I showed her my burned up skin initially and she said we were stopping treatment). Tomorrow is the followup with my RO since she saw my badly burned skin last week and my Pack Rat is coming with me because he didn't like the answer I got to the question about too many rads by mistake. When I asked, the RO had said "Not possible, the machine would automatically shut down if the input dosage was incorrect." Maybe that's right and I don't know enough about physics to know better, but my Pack Rat says this bears further conversation. So since HE apparently knows the right questions to ask, he's coming with me.

    Anyway -- for the first few days after seeing my RO last week I used the special bandages and gel, plus the cortisone and silver sulfa-whatever cream, and you know, not only did I not feel better, but it actually got WORSE: somehow numerous more blisters began to appear. So between that and hating feeling so gucky all the time with all that crap on my body, I STOPPED using EVERYTHING except the benadryl and ibuprofen for the pain and itch. I'm still red and most of the blisters have broken and I've started peeling, but fine, it's not getting worse, the blisters breaking on their own and the peeling are early signs of starting to heal a bit, and most of all, at least I'm not greasy gooey anymore and THAT is a MAJOR improvement in how I feel overall. I'm still using the Dove sensitive skin/unscented body wash in the shower, still taking cool to lukewarm showers and not letting shower stream directly hit my chest (no hot showers or direct water on my chest at all -- in fact, I haven't taken a HOT or direct-chest shower in several months now, not since the night before my BMX in May so I kind of forget what that's like by now), and still not back to using deodorant, but at least now when I take a shower I feel CLEAN.

    Now if only all that (the rads and SEs) hadn't been for nothing. Yup you heard me right -- the treatment didn't even work so my whole summer was ruined by coughing, fatigue (finally just starting to lift a little as of the last 2 days), radiation burns and all that frickin driving for nothing. You should see the major crop of those little nodule skin mets I have now; they all started popping up within the last few days, and two of them (so far) are in one of the most irradiated areas.   ::::sigh::::

    How are your boosts going, Gigi? 

  • janinnj
    janinnj Member Posts: 89
    edited August 2011

    Gigi-If I remember right tomorrow should be your last treatment and I'm done on Friday.  Let's celebrate!!!!!!!

    Lena-Sorry nothing ever seems to go right for you.  Keep us posted on what the RO has to say at your follow up.

    My Mom left today to go back to Az and the house seems empty tonight. Had my pre-Femara DEXA scan today.  Tech said everything looked normal but of course the Doc still has to reveiw it.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited September 2011

    Lena:  Wow, what miserable luck.  So sorry for all of your pain and the failure of rads.  Please let us know what the RO says.  You certainly deserve some good luck.  Sending hugs to you.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited September 2011

    GiGil:  Congratulations on finishing rads.  Isn't it a wonderful feeling?

    janinnj:  Congratulations to you, too.  I hope all goes well tomorrow. 

  • Lena
    Lena Member Posts: 1,036
    edited September 2011

    Good going to you for finishing tomorrow, Gigi!  and thanks for the hug Elizabeth. :-)

    Followup with RO actually went well. She says my chest looks vastly better now than it did last week, and in another two weeks, the remaining "broken blister scabs" should be all gone. I showed her all the skin mets, including the two in the irradiated area and told her I wasn't so sure the rads had been worth the loss of my summer and all the side effects, but she firmly believes that had I NOT done the rads, I'd be in far WORSE shape than I am with regards to the skin mets (which is also what my Pack Rat suggested last night when I showed them to HIM) -- as in there'd be even MORE, and they would also be bigger (they're little nodule-bump thingies, about 20 or so below the radiated area plus the two in the radiated area), as in really tumor sized.. So OK, maybe it wasn't a total waste to have the rads, but I was SO upset that I ended up with BOTH the ruined summer AND the skin mets.  Well, in a couple weeks I'm seeing the "regular" oncologist again and THEN will be time to deal with the skin mets.

    My Pack Rat shocked the hell out of her (the RO) I think, with all the questions he had about the radiation machine/treatment dosage and techniques -- like gamma knife and arc as compared to the external beam treatments I got; he wanted to know if those could be used on the skin mets; she said it was possible but not practical, and that systemic treatment like anti-hormonals, tyrosine kinase inhibitors or chemo were preferable at this point. That part I was already aware of though, but I'm glad he got to hear that from a doctor, and the conversation was certainly interesting. Also he's now satisfied on the subject that I didn't get an accidental overdose (i.e., there are records that the technicians programmed the machine correctly with the dose I was supposed to have), and yes, these sudden escalations from just red with minor to moderate itch and burn to full on painful as hell second degree burns with blisters like I had CAN and DO occasionally happen towards the end of rads even when the patient has always been given the correct dosage.

    She wants to see me one more time (in a month). My Pack Rat doesn't have to come with me for THAT appointment, but he will go to the "regular" oncologist with me in a couple weeks.

  • GiGiL
    GiGiL Member Posts: 928
    edited September 2011

    Thanks everyone for congrats on finishing rads.  It feels like a huge relief.  Janinnj, congrats to you for finishing also.  I celebrated yesterday by having lunch with my husband and then going to a movie.  In the evening he grilled steaks and made salad for me and my sister, who has been such a trooper to stick by my side through this  Won't it be nice to have a long weekend when we don't have to hurry up and heal for Monday?  How soon will you be starting the Femara?  I have to make an appt. with my MO soon.  I want to heal a little first.  

    Lena, I am so sorry for all the trouble you have been encountering.  I hope they get it figured out for you soon.  I have been extremely red and peeling as well, but no blisters or nodule type things.  You have got to be beyond frustrated with all of that on top of enduring most of the rads therapy.  

  • GiGiL
    GiGiL Member Posts: 928
    edited September 2011

    Elizabeth, it truly is a wonderful feeling.  It is like running against the wind, and suddenly having the wind just stop.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited September 2011

    Hi GiGiL, What an eloquent way to describe the end of rads.  I hope your skin will heal soon.  I saw my MO the day after I finished rads and he prescribed Arimidex for me.  He said it would be safe to wait a month before starting to take it.

  • janinnj
    janinnj Member Posts: 89
    edited September 2011

    GIGI-It does feel like the wind has stopped.  My MO already gave me the script for Femara.  I had a baseline DEXA scan Wednesday and should have the results by Tuesday.  As long as the scan is okay I am to fill the script and start.  I have mixed feelings about it's side effects.  My 81 year old mothet who is in great shape has gone from 5'9" tp 5'3" in the past few years.  My 33 yr old daughter already has osteopenia.  Has had it for over over 7 yrs.  She was always involved in sports and never has had a regular cycle.  But on the other hand everything I read seems to recommend Femara so I guess I will try it and take my Vit D and Calcium and see if there is anything else I need to do diet wise to combat the side effects.  Got to get started on some kind of exercise too.  I have been pretty lazy through treatment.

    Everyone have a great week-end

  • GiGiL
    GiGiL Member Posts: 928
    edited September 2011

    I would love to have a month to try to get 10 lbs off too before i start the meds. My MO wants to start me on tamoxifen for 3 years and then an AI for 2 years. I have to talk to her about that. I am post menopausal and I don't like the SE's with Tamoxifen. I know the AI's are not SE free, but i have read some research that makes me feel better about them. Some research is showing the SE in regard to bone loss, reverse when you stop taking them, and they may prevent mets to bone. I need to study more.



  • GiGiL
    GiGiL Member Posts: 928
    edited September 2011

    Anyone having their whoke breast peeling, including the nipple?

  • janinnj
    janinnj Member Posts: 89
    edited September 2011

    GiGi- My family history of Blood Clots anf Uterine Cancer is one reason we're not going with Tamoxifen.  The studies I have read seem to favor Femara slightly but definitly recommend taking it after the Tamox if you do that first.  Yes I am peeling.  The worst is over my clavicle because I didn't realize I needs to use my oil and aloe up that high until it started bothering me.  Then second worst is the nipple but the Emu oit seems to soften the peeling skin and toughen up the new skin.  My scar is a real mess.  I started out beautiful after the first lumpectomy.  My BS went right around the areola and you could hardly see it.  When we had to go back in to get clearer margins it was a little more visible but still not bad, but after my 3rd round of AC I got an infection in the same place and they had to open it and clean it out.  After that my whole nipple collapsed and my scar is a deep groove and very tender throughout the rads.

    But we made it through. I just keep telling myself the the peeling isn't any worse than I've gotten from a sunburn in the past and it will be over with soon. Let the healing begin!!!

  • Lena
    Lena Member Posts: 1,036
    edited September 2011

    My entire chest is peeling (no breast or nipple peeling though since I don't have breasts anymore). I feel like a snake, I'm shedding skin EVERYWHERE! It's a LITTLE less red, but still red..... 

    ...but at least I had enough energy to do some stuff with my plants today. 

  • GiGiL
    GiGiL Member Posts: 928
    edited September 2011

    Janinnj my family history has blood clots and uterine cancer as well.  I will have to point that out to my MO.  She may not have made note of that.  Sounds like we are all moulting right now.  Too bad the end product won't be more beautiful looking skin.  My skin looks just awful.  Some is bright pink new skin, some is grayish and some is black and peeling, under the ointments and oils.  It is hurting less though, so that is good.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited September 2011

    when does the peeling stop? I finished my boosts friday and the rads to the whole chest last week.  I am still peeling. My armpit is looking better.  I am not as purple any more.  I keep thinking I don't have any skin left to peel and yet it keeps on coming.  Looking forward to not being sore, red and peeling.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2011

    yorelh-still peeling 12 days after finishing RADs. The itching has lessened, tho

  • Lena
    Lena Member Posts: 1,036
    edited September 2011

    I just passed the two weeks mark from my last treatment, and I'm still peeling. However, like coraeliz, my itching has noticeably diminished.

  • LeeLee3
    LeeLee3 Member Posts: 40
    edited September 2011

    Hi Ladies, hoping that everyone is doing well and healing/healed from Rads!

    Thursday made three weeks out of Rads for me and had follow-up appt with Rad Onc, as well as first appt with Med Onc ---- it was also 5 months to the date (April 8th) that I received the call with the results of my biopsy...

    First had appt. with RO and he said that my skin looked good and that I should continue with the therapy lotion for about three more months that that would help my skin get back to normal sooner.  I only had some minor itching during early Rads, but no peeling just discoloration (light and dark patches).  So I will continue to use the Alra therapy lotion.

    Just curious as to how many of you received the tattoos on your breast or did you have the semi-permanent markers during Rad treatments?

    Next, had appt with MO and was already to tell her about my hesitation/resistance to taking the Tamoxifen, the main reason being that I have fibroids and had read that it was common after taking Tamoxifen for 2-3 years that existing fibroids could nearly double in size.  I had the UFE procedure for my fibroids about 11 years ago that worked wonderfully for 8-9 years - the fibroids returned so I had the same procedure last June and the results were not as successful as the first procedure.  A heavier or longer or more bothersome period was just not an option for me, after going through everything else!

    So wanted to hear her thoughts about that (I switched Oncologists after my lumpectomy so this is my first time seeing her about BC post treatment) - I saw her as a Hematologist a couple of years ago for anemia due to my heavy periods, so we initially talked about a hysterectomy, which I was all for.  As she started looking through my charts, she noted that my recurrence score was pretty low but that she still highly recommended the Tamoxifen because it could do nothing but increase my chances of remaining cancer-free.  She said that there was definitely a possibility of the fibroids growing due to the Tamoxifen.  She then suggested that there was a shot I cold take monthly that would stop my periods!  That she also said could only help, with pretty much same side effects as Tamoxifen, hot flashes (she stated that if the hot flashes are unbearable or I couldn't function - night sweat, no sleep, etc.- she could prescribe something else, but that it would be best to deal with them if you can, so that you're not taking yet another drug.)    I didn't ask her the name of the drug, but I came home and did some research and I'm assuming it's something called Lupron (a drug that basically shuts down the ovaries).  Her office has to confirm  that my insurance will pay (it's supposed to be pretty expensive) and then they will call me to come in and get the shot...  So, definitely interested in it as a short-term fix (I believe that she said I would take it for 2 years), but also open to hysterectomy/oopherectomy if I need to.  Anybody have any personal or second hand experience/knowledge about Lupron?? 

    So, I had the prescription filled and took my first pill that night, so we'll see what happens!  I'm going to NY next month for my birthday and do not want to be feeling lousy, so wanted to go ahead and start taking it so that if I feel sick or have horrible, horrible hot flashes, maybe I can stop a week or so before my trip! Also, I have NEVER had a prescription that was totally FREE!!! I've had some antibiotics from the dentist that were maybe $2 bucks, but never free - wow :-)  I was already trying to figure out what this was gonna cost monthly for 5 years, so that was a nice surprise.

    Continued Blessings to All!

  • janinnj
    janinnj Member Posts: 89
    edited September 2011

    I had tattos. Just 2 tiny dots

  • pejkug3
    pejkug3 Member Posts: 902
    edited September 2011

    I had tattoos - 7 tiny dots

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited September 2011

    I had tattos - 3 dots.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2011

    LeeLee-I took Lupron shots several years ago as part of my infertility treatment. I was temporarily put into menopause by the Lupron. I loved it! I was going to try & talk my MO into giving me Lupron in addition to Tamoxifen. I have fibroids but also a history of ovarian cysts which I don't want again. I don't see my MO until the end of the month. As for tatoos, I have 3 small "blackheads". Thay're actually quite small & don't bather me.

  • Lena
    Lena Member Posts: 1,036
    edited September 2011

    LeeLee -- no tattoos for me, I had the markers (at my own request). No experience with Lupron though; chemo and AIs are what threw ME into menopause. :-P

    No I don't REALLY miss having periods, and in fact (young and naive though I was), had always used to think that menopause was the ONLY good thing I could possibly imagine about getting older. But, as they say, hindsight is 20/20. I miss my estrogen. I miss my once formidable libido (I still have SOME left, but by comparison it's paltry). If the price of my wonderful constant libido was having to have those yucky periods every month, so be it, and I stand corrected: there is NOTHING AT ALL which is "good" about getting old. It totally freakin' SUCKS.  :::::sigh:::::

  • LeeLee3
    LeeLee3 Member Posts: 40
    edited September 2011

    Thanks Janinnj, Pejkug3, Elizabeth1889 - Was just wondering about the tattoos...because I'd initially been told that I would be given one so that it would always be known that I'd had radiation and I exactly where radiation was aimed??  Didn't really think any more about it until I was going to meet with my Rad Onc for 3-week follow up visit after Rads and was thinking of questions to ask him.  He said they should've done it, but the markers were gone now and that it was no biggie, because it's in my records and the incision is an indicator as well.  So just curious - not that I'm claiming a need for that information again!!!!

    Coraleliz - Thanks!  Exactly, I was so looking forward to it --- however met with my breast surgeon today for a check-up and she said that I was NOT going to like it - she seemed to feel that the Lupron and Tamox were gonna give me serious hot flashes.  This is day 5 for me on Tamoxifen and so far no SEs, she seems to think that they would've kicked in by now and that I should wait and see if the Tamoxifen stops my periods.  So now I'm undecided whether to wait a couple of months or go ahead and try it and if I get unbearable hot flashes from the combination, then stop getting the injections????  I have some time to decide so...

    Lena - Thanks - like I said I was so looking forward to not having a period.  I have always been the most regular person I know!!!  The only time I didn't have one is when I was pregnant, and I was too sick then to even enjoy it!  Yeah, and I definitely know what you mean about the missing estrogen and the effect it can have on the libido effect Laughing!!  I was telling my husband and he was looking at me sideways - LOL!!  Then I was thinking I'm gonna have mood swings, be cranky and then not want to be bothered with my husband - this is gonna be one "happy" household - LOL!  Yeah, but with regard to getting old, let's think about it the way my mother always has (she's 81) and has always said "the only way to not get old is to die - so let's just keep living!!  After getting through this we can do anything!

    Blessings!

  • pejkug3
    pejkug3 Member Posts: 902
    edited September 2011

    Lena - how is the healing going?

    I saw the RO for my follow-up today.  I'm one month post rads.  He scheduled me for a mammo in mid-January and sent me on my way.

    Ugh - mammo.  I had one on the BC breast before rads.  The one in January will be on both.  I'll be taking Xanax before that appt.  :::groan::: 

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited September 2011

    3 weeks out and still peeling. Can anyone out there give me hope that my skin will be better in the near future. My mastectomy scar is really looking awful right now.

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