Any October 2012 rads girls out there?

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    Yes I ache everywhere, mild nausea at times and intense itch with no rash in several places. I asked my RO today and he said the nausea was not a rads side affect. Well it started the night I started Rads. Oh well.

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  • anastasia31
    anastasia31 Member Posts: 45
    edited October 2012

    My radiation tech told me the only thing to use after radiation is aloe vera.  I picked up some Fruit of the Earth.  Can't tell that it really does anything.  I checked out a container of miaderm (sp?) and it had parabens in it.

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  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Bunkie,

    Why do doctors always deny side effects? Sorry that happened to you. I got nauseous from my PET scan. I bet rads does that to me to. Did you ask about the HER?

    Anastasia, I didn't know Miaderm had parabens in it!!!! I am so careful about that since diagnosis. I am disappointed.

    Pam

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  • anastasia31
    anastasia31 Member Posts: 45
    edited October 2012

    Pamelahope: Oh shoot.  Now I have to eat crow.  It was mederma I checked out that had parabens.  My apologies!  Mederma was recommended to me after surgery to reduce scarring and I was shocked that they would recommend something that had parabens.  Miaderm was never recommended to me after radiation.  But maybe I will check that out now.  Again my apologies!

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Hey everyone, I just started rad today.  I was feeling pretty good going into it because my sister (we are BRCCA 2) just finished and hardly had any symptoms, but my skin is pretty tender tonight so I'm a little worried now...  I'm using Radia Gel and that seems to help quite a bit so far.  Last day of radiation is Nov. 27th - I'm on a countdown already!  

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  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Anastasia, I don't mind. Glad we found out Miaderm is still okay.

    Ames, I am BRCA2 as well. I have a rare mutation 6633. I was afraid that I would have increased sensitivity to radiation because of it. Also, I am afraid of getting a secondary cancer from this. Please tell me more about your sister sucessfully completing rads.

    Pam

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited October 2012

    Hello Ladies,

    Can I join you all. I have my initial RO consultation tomorrow and IF she convinces me to do the Rads then mostly I will be starting next week.

    I fall into the grey area with isolated tumor cells on my Sentinel node, but being the dreaded triple negative and being diagnosed at the prime age of 33 :), they want to throw everything at me (I understand they are doing it for my own good :) )

    Somehow I am scared of radiation than the chemo. So let's c what the RO has to say.

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    Hi Pam,

    The RO said that they have a standard they go by and I do not fit the criteria. Usually younger...I am 60. Usually Not stage 0 and grade 2. He said they could order it but that it would be probably rejected by the insurance and I would have to pay for it. He said that is why the study is being done. If you are stage 0 and grade 2 you can offer yourself to be tested for free they give you 2 doses of the HER2 drug and check you for several years. Considering I have so many other issues I passed on the study. I am doing good getting through rads.

    Today was day 4 and I did good till about 2pm. Hit the wall and almost passed out. I was standing in a store and felt faint. I hurried up and paid and sat in the car for about 10 minutes. Scared me but then it passed. I need to donate my body to science for sure.Laughing 

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  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Bunkie, So glad you are getting through. The fatigue seems to be hitting early. I think we all did donate our tumors to science!! Isn't that what happens to our pathology? Pam

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Hey Pam, yeah, radiation is kinda freaky!  I really wish there were treatment options that weren't so destructive.  My rad onc didn't mention that I'd be more sensitive b/c of my BRCA gene - just said that my young age (31) put me at a much higher risk for reoccurence so she felt that the benefits would def outweigh the risks.  Here's hoping we all get though without too much damage!  I don't know anything about the 6633 mutation though!  Yes, my sister did great!  She has a little redness and slight peeling under her arm, but otherwise had no symptoms.  She swore by a D3 supplement and daily jogs and said that Emu oil, which she slathered it on multiple times per day, really helped her skin.  She also used aloe vera for comfort.  Her doctor prescribed Singular for her throughout radiation, because it's supposed to reduce capsular contractions and she is still hoping to have implants afterwards.  She finished on Friday and is celebrating this week by having a drink each day at the time that she would have had radiation.  =)  Sounds like something to look forward to!  

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Anastasia, the Radia Gel I am using is pretty much like presciption strength aloe vera - it looks/feels/smells like aloe but has other properties that are supposed to really promote collagen building in the skin...I'm pretty tempted to dab it around my eyes as well! =)

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  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited October 2012

    Bunkie I'm day 4 too. I don't think I'm having any side effects yet am starting to feel achy all over. Under my arm where my lymph nodes were taken out is sensitive too. I am still healing from my surgery so maybe that has something to do with it. Feels weird because its all numb.



    Please be careful while your out and about. My DH always had people go with me to my chemo because I had benedryl and other stuff that made me groggy and the facility was an hour away. So I couldn't drive on the way home. Plus the NJ Turnpike on a summer Friday at rush hour is gruesome enough 😳. My long ass rambling means to say maybe you can have someone on the other end of your phone in case you need a ride home (if you don't already).

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Welcome SaturnRing!  Hope your appointment goes well and that you come to a decision that you feel good about!  I was really hesitant about radiation initially, mostly because I wanted implants and wanted to get through the tx process as quickly as I possibly could, but eventually came around when I stopped being in such a hurry to get done and accepted the idea of a DIEP at the end of this all.  Now I just want to blast those cancer cells...stupid cancer!

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    You are right Karen. I told my friend to go with me to all appts from now on and in stores etc. That fatigue sure comes up suddenly. Like bam!!

    I have some pinker area under my breast now and armpit and it is sensitive. Sort of tingled when I put on the Aloe Vera. Maybe I should use it more than twice a day. They told me after rads when I get home and at bedtime.

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012
    Pam they can have my entire body. Undecided
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  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited October 2012

    I'm in the same town where I go for rad and I go right home after so if I get the tired feeling I'm just down the street. I will be on that tiredness though.



    I hate putting on my lotion because its all numb and feels weird. But gotta do what ya gotta do!

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  • ohiobecky
    ohiobecky Member Posts: 56
    edited October 2012

    I just had my mapping done today, should be starting either Friday of this week of Monday of next. I have heard to put the aloe on right after treatment and the aquaphor at bedtime? Does that sound right?

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  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Ames, Why not dab radiagel around your eyes! I am tempted to go out and buy some!!! Thank you for telling me about your sister. My sister and I are adopted and she was BRCA2 also. Her mutation is the common one 6174. She does not have bc.

    Bunkie, the fatigue is coming on fast. Is it like chemo fatigue or better?

    I have an appointment on the 22nd with the RO to see my post mastectomy healing. I developed axillary cording.

    What areas is everyone radiating? I think he said chest wall, axillary, and supraclavicular, UGH! I was really good with chemo, having a hard time with this.

    Pam

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  • onestepatatimetosurvive
    onestepatatimetosurvive Member Posts: 16
    edited October 2012

    Hi girls! I just went for my simulation today. Hoping to finally get to start rads next week as I have been finished with chemo since August 24. I have an open incision from a surgery back in may that they have been waiting to heal completely because it is close to the area that needs radiated. Today my PS said its good to go, but the RO wasn't quite as convinced. He told them to go ahead with the marking and simulation but he wants to see the incision again before the first tx. It has been a very frustrating journey as nothing has gone right from the beginning but I try to stay positive.



    I am a 32 yo mother of 3 (ages 8,6, and 2). I also work full time outside the home so I'm wondering how bad the exhaustion will be and when it will probably hit.



    I also wondered about those of you who are hormone receptor positive. My MO told me to wait until after rads to begin taking tamoxifen. Then when I got a 2nd opinion that RO said to take it right after finishing chemo and throughout rads. However, aunt flo came back to visit this past weekend (even though they thought the chemo had made me post menopausal). Now my MO says to take tamoxifen until rads start, then stop, then start again when rads are finished. I am so confused... Anyone else gave this issue?



    Sorry to be long winded. Just lots on my mind tonight.

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    Hi Ladies,

    Finished my 5th yesterday. Have to say it was a tuff day. My fatigue is off the charts. I could hardly walk to the car after treatment. Came home and stayed in bed all day. I had a few moments of normal and did a load of laundry. My boyfriend had to put them in the dryer and put them away. I went to sleep early and woke up after my usual 7 hours but I am extremely fatigued this morning already. My time is at 2pm from now on so I will see how I do today. My breast is sore and I get zaps of pain all day. Skin changes are ok. Turning red already and having a hard time getting that aquaphor washed off. Sticky it is. They want clean skin but no rubbing to get off the cremes. Ok.....how is that done?

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited October 2012

     BUNKIE10

    I have not had rads myself, but it seems to me that your side effects are extreme.   The things you speak of usually don't kick in until a couple of weeks.  Have you told your doctor? Have you considered a mastectomy?

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  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    Hi All

    I am likely to start rads in October. I have my first  RO consultation on the 19th.

    @Bunkie - I'm so sorry for all the severe SEs you're experiencing. I know you've told your RO, but I'd suggest you keep telling her/him until you're heard.

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    I am going to talk to the RO Monday. I have a little sore throat also. I am hoping it is just ampified because of my Sarcoid.

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  • pamelahope
    pamelahope Member Posts: 534
    edited October 2012

    Bunkie, Good luck tomorrow. I hope it gets easier. Pam

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  • Tammy2012
    Tammy2012 Member Posts: 22
    edited October 2012

    today was my 6th.  yesterday i woke up very nauseated.  i went to my appt and they had me see three Dr's who all told me nausea was not a side effect.  i threw up last night and i swear the sickness i feel is the same i felt when i started chemo.  they gave me an Rx for Zofran and that helped.  so after today's appt they asked me if i wanted to see the Dr?  I said no, it's not a side effect so what's the point; i'll call my PCP to see if he thinks i need hydration.  I haven't eaten in two days because of the nausea.  I told her i also looked it up online and had found that nausea could be a side effect but she shot that down and said they've been doing it for years and that can tell me beyond certainty that it's not.  I see my RO on Monday so I'm going to print out what i found onine, highlight it and tell her to please put it in my chart.   6 down ..... 27 to go!!!  

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Tammy, I kept getting hit with waves of nausea today too and had some dry heaving this morning, though no vomiting thankfully b/c I was at work at the time.  I had my 4th today!

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Pam, you bet!  Glad that your sister is bc-free!  I have another sister who is positive for BRCA but negative for cancer and I'm so thankful that she'll be able to be monitored so closely and will be able to make fully-informed decisions about what to do next.  My mom is BRCA positive as well and went in for a prophylactic (sp?) total hysterectomy this afternoon.  Hang in there!! We'll be through before we know it!

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  • Ames
    Ames Member Posts: 9
    edited October 2012

    Onestepatatime, my medical team gave me the option of whether or not I wanted to start Tamoxifen during radiation or wait until afterwards.  They told me that they usually wait until after rad tx, because the SEs of Tamoxifen can be pretty severe and they don't want people to get overwhelmed from managing those and the SEs of radiation at the same time.  My radiation oncologist is a little worried about me waiting though, because I'm young (like you), am having periods and have a very aggressive cancer type, so I think I'm going to opt for starting Tamoxifen now...maybe....

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  • BUNKIE10
    BUNKIE10 Member Posts: 733
    edited October 2012

    Ames and Tammy 2012,

    I am sorry you are nauseated but glad I am not alone. Mine comes in waves. I can be fine for awhile and then it will hit. So far no vomiting but just real quesie and icky. I spoke to my RO last week and he poo pooed the idea saying that is not a SE of radiation. I have been sipping Canada dry ginger ale when it hits and trying not to drink much because of the high sugar. I see my RO next Monday and I know he is going to stick to his story.

    Yesterday about an hour after treatment I got a sore throat and a mild headache. The sore throat was lower down my throat. I got all freaked out thinking it was a cold but my temp was normal and the headache stayed mild all day. The throat so I went to bed at about 9pm and did not get up today till 7. It seems better this morning. I am sure he will tell me that is not a SE either. Hang in there ladies. Today is my 7th treatment. Can't wait for the week end off.

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  • njprn
    njprn Member Posts: 39
    edited October 2012

    Hi all, I too started Rads Oct 1. I am also experiencing mild nausea and was told it was a possible SE yet not as common. I also get a funny metal taste in my mouth which the tech said she has heard other people say. During chemo raw ginger helped (sushi section at the store). So far the fatigue is tolerable but I also feel a heaviness of my chest.Another "new normal" I call it. Today is #8 and counting! Lots to be thankful for this Thanksgiving!! I 'm not sure who posted it but as far as reconstruction has anyone looked int o micro fat grafting? Great source at miami breast center. Your own fat is used so might be a good option for those with autoimmune issues fearing implant problems. It's used a lot for augmentation but some surgeons are starting to use it for reconstruction.

    Glad to have found you all. This journey has been made more tolerable because of it..... Nance

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