Winter rads 2014-2015

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  • Beachbaby65
    Beachbaby65 Member Posts: 68
    edited November 2014

    Hi Perfectlyimperfect39 ,yes I got three , one in the middle, and one on my right side, one on the left

    Hope50, thankyou, knowing that eases my worry.

  • perfectlyimperfect39
    perfectlyimperfect39 Member Posts: 25
    edited November 2014

    Thank you beachbaby. My mind was worrying thinking did they see something on the left. I hope your feeling more better about the situation. Hugs

  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited November 2014

    Perfect... I was told that the tattoos are used to line up your body to the correct position for the radiation beams. I have 3 tattoos - one on each side under my arms and one in the middle beneath my sternum. 

    Hi MagicalBean - welcome aboard.  It's encouraging that you are doing so well with this.

    Radiation really is "taking it one day at a time."

  • CAS4
    CAS4 Member Posts: 54
    edited November 2014

    image

    Looks like my iPad froze again.Welcome MagicalBean!

    I think all of you are amazing!

  • LMVerna
    LMVerna Member Posts: 19
    edited November 2014

    Hi All,

    Just finished my weekly taxol yesterday. I will continue to receive Herceptin every three weeks for the year. I am starting radiation on Tuesday. I had my simulation earlier this week. I am still feeling run down from the taxol and am a little worried about starting right in on the radiation without much recovery time. However, I am also anxious to just keep the process moving along so I can get it all done. I think I will be looking at 27-30 treatments. Not sure exact number yet.

  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited November 2014

    Hello All, I just finished compiling our current Winter 14/15 Rad Group. In our July Start Chemo group we posted it at the top of the discussion board. I think it helped us keep together.  If we, as a group, are interested in that, I will post it and find out how to move it to the top - or ILCMom can add it to her original post and add to the list as we grow. (This is what Mags did in our July group) Right now, there are 20 of us who have posted so far.  8 of us are currently getting rad treatments. The rest of us are just around the corner.  What do you think?

    Going for treatment in a bit. It seems to be an all day event because of the 3+ hours of drive time.

  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited November 2014

    LMVerna - Last Monday was my first rad treatment, and it was 3 weeks post chemo. I'm still dragging my tail side around.  It doesn't seem to be an issue for radiation treatments except that I would fall asleep during treatment if they were a few minutes longer - think exhausted, warm blanket, white noise in the background.  I agree with your "Get 'er done" philosophy!

  • CAS4
    CAS4 Member Posts: 54
    edited November 2014

    LMVerna I agree with you too- I found during the three weeks off between Taxol and radiation that I lost some of my forward drive- either way we all have side effects to deal with- I had #5 of 32 radiation's yesterday and so far the only thing I've really noticed is I sleep through the night now- which I have not for 5 months of chemo so it's a welcome change.

    CoyoteNv I hate that you have such a commute! I'd drive you if I could! The group idea is great, I think!

    Question: do any of you feel as if you get support from the other ladies you are in treatment with or is it all moving so quickly that you really have not even met?

  • perfectlyimperfect39
    perfectlyimperfect39 Member Posts: 25
    edited November 2014

    Hi MagicalBean

    Coyote: Thank you for the tattoo marking answer. That's what I thought. Also, that is such a long commute. Glad you are able to make it there. My oncologist and surgeon are 45 minutes away and I thought that was far. I chose to have my radiation closer (20 minutes) Hope you have a good appointment

  • ILCMom
    ILCMom Member Posts: 18
    edited November 2014

    I am so far behind!! I started the topic and then got slammed by two colds thanks to my kids. Plus antibiotics gutting my insides plus forging on with Taxol I literally was asleep whenever possible. Anyhoo!

    If we need to combine things maybe the mods can do it?

    As for me Taxol 11 done and 12 (last one is next week). My voice has returned after the colds. Neuropathy as always. Blah, blah, blah!

    Ct Sim is on Dec 8, verification on 12 - start date is set 15. My expander gets its last pump up today - ugh. I think iron corsets were more comfortable. Hoping by the time I 'assume the position' for radiation it won't be too bad. I will be getting tattoos - the markers sound annoying! No armpit hair to worry about and I stopped wearing deodorant when I had surgery in June - my right armpit is a mess from the lymph nodes (I don't sweat that side at all now) and on my left I just use baking powder and corn starch which I puff on. Aloe 99% was recommended for me start - bit worried as I burn in the sun.


    I hope I won't be exhausted but I think until you do it it is an unknown. My ride to the apt is 45 min - 1hr each way and all apts will be at 10am as I have kids in school. Could get it done closer but the best is going to where I had surgery at so I am going further.

    I feel like a never ending project. Once this radiation is done then I at least have implant put in and kidney stone surgery ahead. I only had the right side done but am now concerned to it spreading so in my meeting in Jan with my breast surgeon I want to discuss doing left side prophylaticly. With little kids I would kick myself if this crap is back again in 10 years.

    I find chemo to be great to have a chat at but I guess with rads it is more in and out. I will miss my chemo buddies!


    Hope all of you are well and rested!




  • MagicalBean
    MagicalBean Member Posts: 362
    edited November 2014

    Hi from snowy NY,

    ILCMom: Sounds like you've had a few nutsy weeks. Whew. I was also concerned about skin issues because I burn easily too. Today was # 14 and it's just starting to get itchy. Tolerable so far.

    Coyote: Thanks for your warm welcome. And thanks for your work on compiling the group info. I'd love to see it posted at the top of the boards. Do you drive yourself everyday or do you have company? Wish we could share the ride with you.

    CAS4: Candy and Gladys? I love it. I have Lucy and Ethel. Lucy's the one in trouble, as usual.

    Perfect: I enjoy your attitude. Keep it up.

    We're all one day closer to stompin' cancer's weasel-butt. Pleasant dreams everyone.

    .

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited November 2014

    CoyoteNV, I like the idea of posting information at the top of the board.  I start radiation Monday the 17th.  What a commute for you!!!  I am almost embarrassed to tell you that I have a two minute drive and am going to have the radiation treatment on my lunch hour. 

  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited November 2014

    All the empathy and support about my commute actually helps!  We are checking out the option of my staying a week in St George, which is where I get treatments.   This week, my DH drove with me every day because my chemo exhaustion is still with me.  I actually did fall asleep during my rads today.  I do have to say it is a beautiful drive and so far the weather is wonderful.

    I sent our list to ILCMom and we are working on where and how to post it and get it to the top. I'm glad you find value in the idea.

    ILCMom - As a recurrent cancer patient, I understand your concerns.  I was fortunate that it came back where it did - 2 inches from the original site. 

  • LMVerna
    LMVerna Member Posts: 19
    edited November 2014

    CoyoteNV, I like the idea of posting the group at the top. I am new to posting, but it seems like a new idea.

    CAS4, I hope that I will start sleeping through the night. I hate how I am so tired but can't get a good night sleep.

    I did feel a bond with some of my chemo buddies. There were a couple other women dealing with breast cancer and we did share some of our stories and issues with each other. However, it seemed like they were at different points in their lives than me (one was very young and the other was much older) so we didn't really have some of the same issues outside of chemo, etc. I did find a few other ladies in my community who I knew but didn't realize they had been through breast cancer that I am trying to connect with. It is good to be able to talk with others, commiserate, and share tips for things that help.

  • yikes1
    yikes1 Member Posts: 120
    edited November 2014

    Hi all,

    I looked up a prescription for some cream I was prescribed as I just received call today that I maybe starting my radiation next week - and found this group. I am not looking forward to this next phase but am glad to know this group exists. The prescription is for RadiaPlex but from reading other posts it seems it will not be covered. I was also told I could use Aquaphor, so my first question is can I get the generic?

    thanks

  • Hope50
    Hope50 Member Posts: 103
    edited November 2014

    Hello yikes, I got the same prescription and my insurance didn't cover it. I went ahead and got one tube of it and I think it was around $32. I have just had 7 rads so far. It is not as greasy as some of the others. It should last me a bit. Thought I would use that more during the day and the aquaphor at night.

    I wish you well as you start. So far for me I'm tired but some of that is still recovering from chemo. I have noticed the last 2 days the side they are doing is getting a little tender. Not bad though.

  • LMVerna
    LMVerna Member Posts: 19
    edited November 2014

    I see that some people say they are getting tender at the site of radiation. Is anyone doing the radiation with a tissue expander in place? My tissue expander is already a little uncomfortable and I am wondering how it will feel. I have also found now that since I am about 5 months out of my mastectomy, some of the nerves are regenerating and I am having more senstivity/discomfort on my mastectomy side. It's nice that some of the numbness is going away but it is sometimes uncomfortable and I am wondering how the radiation will affect it all.

  • Beachbaby65
    Beachbaby65 Member Posts: 68
    edited November 2014

    hello yikes1, I use something called Callendula cream that you can find at stores that have a health food section. My RO swears by it and so far it's been great. Aquafor is also something she suggested if I started having skin issues. It's number 7 for me since do to bizarre weather I had to miss yesterday. I drive an hour each way and we were under a winter advisory with pockets of sleet and freezing rain! Go figure. PerfectlyImperfect39 I feel a lot better about the nodule on my lung thank you for the hugs it helped!

  • yikes1
    yikes1 Member Posts: 120
    edited November 2014

    Thank you to Hope50 and Beachbaby65 for responding about the RadiaPlex RX. It does not appear to be covered by my insurance but another one may be called xclair. Need to check into this next week.

    I have read about Callendula cream so will check that out. And Aquaphor is another that was mentioned by the Radiation staff also.

    Beachbaby65 - I hope your weather is better. I live on the East Coast and it just got very cold.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited November 2014

    LMVerna, I have expanders since January 29. Geesh, in 2 months it will be a year. OMG! Finished #10 rads today.

    Not knowing anything different, at this point I can't feel anything specific that would be different with TE. I am starting to get pink. The past couple of days I started to get fatigued late afternoon. Having said that, work has been extremely busy so it may be that. But I think it's rads....remembering the chemo fatigue and how I felt then.

    My RO office gave me cream to use. I posted it somewhere. Maybe not on this thread?

  • Hope50
    Hope50 Member Posts: 103
    edited November 2014

    I have completed 8 rads. Got X-rays this week after 5th rad to make sure all Is lined up. So far what I've noticed most is my nipple pretty sensitive and at night it hurts to lay on that side. That area is tender. A little pink but not much. I'm really really struggling with sleeping. Had a great talk with oncologist this week. She says to rest and give myself a break. Only out of chemo barely a month and in the beginnings of radiation. She said many people can get very depressed during this time because the are done with chemo and they want to feel better and they don't. Many people around us think as we complete a treatment then all is well and back to normal. My MO said we can face side effects etc from all this stuff up to a year or so. She said your not gonna feel 100% right away when your body has been through so much. It was a great appointment with her. Everything I'm feeling and how I described it, she assured me it was normal and also that it will get better, just gonna take some time.

    I am supposed to start Arimidex in 3 weeks. Anyone else gonna have to go that route?

    Who is ahead of me? Can't remember. How you doing any SE's?


  • KatieC12
    KatieC12 Member Posts: 19
    edited November 2014

    I think the time has come for me to join - I start my rads this Tuesday, the 18th. 16 treatments I'm told. I've been reading this thread as well as the fall rads thread and found a lot of helpful information. Thank you. I breezed through the sim and tattoos just because I read all about them here, although the tech said it would feel like a mosquito bite! I don't think he had ever had a mosquito bite or he wouldn't have described it that way. Possibly a bee sting!

  • MagicalBean
    MagicalBean Member Posts: 362
    edited November 2014

    Welcome Katie,

    I'm sorry you have to be here, but you won't find a more knowledgeable, compassionate, group of people anywhere.

  • MeneK
    MeneK Member Posts: 2
    edited November 2014

    Hi,

    I am fairly new to posting, but I followed the forums during my treatments.

    I started radiotherapy 3 weeks ago and had 11 up to now (the device was broken for 3 days last week). But this weekend I feel terrible. I can not lay on my right side (operation side). I started rads just 15 days after surgery and the drain for my axilla was just removed. And now it is reddish and my surgeon tells me that its OK. But I feel otherwise.

    Anyways I worked through all chemo and had a week off for the surgery and keep working through radiotherapy too. But rads are making me exhausted and I wish Wednesdays are holidays too. 5 weekdays feel too long. Taxol felt a lot easier. Tiredness that comes with rads is making me feel sick, just at the time when everybody told me that the hard part is over. Plus hot flashes aren't sparing much.

    It nice to find a place to talk this with women who can relate and feel not so alone. Everyone supporting me is very sympathetic to my condition but they rarely understand.

  • KatieC12
    KatieC12 Member Posts: 19
    edited November 2014

    Thank you MagicalBean. I think this board is wonderful, and the site. I've found so much information on it and I am a reader. My aunt was diagnosed about two weeks before me, so we have been able to compare notes and treatments. That has been quite a comfort too, although I'm sorry my aunt has to go through this a second time.

    I'm hoping to have my appointments in late afternoon, so I can leave work and go directly to the clinic and then straight home. They said they'll give me my schedule on Tuesday.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2014

    Welcome Menek, We are sorry that you are dealing with side effects of treatment but so glad that you reached out to this community where as you can see there are so many who can provide support, encouragement and understanding as they walk a similar path. We send you a warm welcome and hope that you will stay connected. The Mods

  • Beachlady28
    Beachlady28 Member Posts: 54
    edited November 2014
    Ok so rads start 11/17 for 33 visits which will take me thru the holidays and ends 1/5/15. Not too happy about being tied down to a set daily schedule of rads thru vacation week but if it will keep me alive I say ok. Taking Anastrozole since 10/26. Got a bit of brain fog and am tired by mid afternoon. Any advice for how to stay calm for initial rad appointments? Basically am tired of surgery recovery, taking these pills for the next 5 years, and now facing 33 rad sessions. However, as I said if this will all keep me alive it is ok. Soooooo any advise for a rad newbie?
  • Hope50
    Hope50 Member Posts: 103
    edited November 2014

    Beachlady, the rads go pretty quick. Hopefully you will have some great techs that will help make it as comfortable for you as possible. I have 4 tattoos. I've had 8 rads so far. I lay there and hold on to these bars behind my head. It takes longer to get undressed and dressed again than the actual rad it seems. I'm tender on my right side and a little pink but not to bad so far. I cut up with my techs and that helps distract me. I see the RO each week and will have X-rays weekly to make sure everything is lined up fine still. I put on cream 3 times a day. I went and got me some cami's to wear if I start getting burned.

    Beachlady how are you doing on the new drug? I start same thing in 3 weeks. I'm very anxious about it.

    Katie I agree more like a bee sting.

  • Beachlady28
    Beachlady28 Member Posts: 54
    edited November 2014
    Hope50: I began Anastrozole Oct. 26 so I have been taking it 3 weeks now. It is a small pill so it's easy to swallow. So far no big side effects, maybe a bit of brain fog and I do get tired mid afternoon but that may be due to the whole idea of having BC and the thot of worrying about a recurrence the rest of my life, and the thot of starting rad tomorrow.
    Hope this info is helpful.
  • linzer
    linzer Member Posts: 164
    edited November 2014

    Looks like I'll be joining you all. My RO consult is 11/20, then simulation 12/1, and I think my first rad will be 12/9.

    Linda

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