Winter rads 2014-2015

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited January 2015

    CoyoteNV, I had my marks and tattoos done yesterday, and the dry run is next Thursday 1/22. I will get my rads schedule next Thursday. :)

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  • CAS4
    CAS4 Member Posts: 54
    edited January 2015

    coyote you are amazing!! Isn't she awesome everyone?!! Thank you for all you've done to keep us organized as you've gone thru all of this madness yourself plus you had an insanely long commute daily!

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    Very grateful to Coyote!

    Cath57 Say what you need to say. We accept it and support you. Mama didn't say there would be just days like this but whole years. You will find the strength.

    MagicalBean I love the doctor worrying about your upbeat attitude. I am one of those people too. It is like we walk along a path with many forks. Once you are on the breast cancer fork, you can't turn back and choose another. So I choose to walk along looking for joy and sharing it as much as possible. I don't know what forks are ahead but am happy I am still walking.

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited January 2015

    Coyote, you can now add me to your list. Today is my first session.

    Ladies, I agree Coyote is awesome! She was a linchpin on our July chemo thread and kept us going when we were on our knees crawling to the john.

    My rads have been delayed for one reason and another. First, I had a lump that needed bx, turned out just fat necrosis. Then they did the sim before Thanksgiving. I didn't know if I was going to make it. I have horrible arthritis in both shoulders, but the left one is worse, and that's the tumor side. They called me in for practice session before Christmas, but there was a snag (literally, the machine wouldn't pass my elbow) so they had to do some re figuring. In the meantime, that flared up the shoulder so badly I called them and said I wasn't going to go ahead, couldn't take that every day for weeks. RO was upset, asked if she could refer me to pain management, I said ok. The pm doc said he could do a nerve block and see how that works. So that was done yesterday, and the relief is immense. So I am scheduled for first tx in 2 hours. The nerve block is short term, so we will see how long. There is an additional thing he can do to make it last longer, but pointless to do it before we knew if it worked.

    I haven't read through the whole thread, but I'll try to catch up.

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  • yikes1
    yikes1 Member Posts: 120
    edited January 2015

    Hi All,

    I was waiting to provide some info I have regarding the "bra" issue.

    But, based on yet another phone call I made today, I then decided it was finally time to contact my Congressional Representative - which I have done.

    There is a way bigger issue here than I could have imagined.

    To CoyoteNV -- it is going much deeper than [what if they did not know?]

    What if they knew, but to get the product, covered by insurance, is practically impossible now, but was not so impossible previously?

    Are we moving forward or further behind? Is this getting easier or harder? Are rules now in place to protect the patient? Or are rules now in place to make this more difficult?

    I only ask that those that make the rules understand the impact things are having on just me, trying to get a bra, that is covered by my insurance. By the way, it is not just about bras. Do you need a cane? A wheelchair?



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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    Welcome to winter rads, magdalene51. Hope the pain in your shoulder subsides so you can do this next phase of treatment.

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  • eileenpg
    eileenpg Member Posts: 467
    edited January 2015

    magicbean=Your RO is an idiot. All my MD's have told me my positive attitude is what has helped me the most through this journey. They commend me for it. Stay upbeat. This are the cards we were dealt. Make the best of a bad situation. It could always be worse. I am a hospice nurse. I can tell you what could have been worse for us

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  • Pita119
    Pita119 Member Posts: 85
    edited January 2015

    MagicalBean,

    Everyone keeps looking at me like I'm nuts because of my positive attitude too. It's not that I'm not concerned about this, it's just that I've dealt with it when my grandmother, my mother, sister & several friends have fought it...some have survived and unfortunately, some have not. I've made it my goal to always be in charge...from doing everything I could possible do to even tell my gyn that he was wrong when he told me he didn't feel there was anything for me to worry about. I do have a very deep faith that I will just have to accept whatever God allows to happen in my life. So keep on going with your positive attitude girl. I'm hoping that my situation & how I handle & deal with it may somehow help someone else who is not able to deal with their situation. Oh, and one more thing...stay informed. I read all & everything I can about the advances that are being made. And don't hesitate to ask questions either...if you don't understand something or it doesn't sound right keep digging until you find the answers that you need.

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    Magicbean, I have to agree with Eileenpg, a positive attitude is what is needed to get through this journey.  I have always been the "class clown" and I want everybody to know that I am a survivor and I will not let bc run my life.  Suddenly some things are just not as important to me as they were a year ago.  But other things are more important to me now than ever before.  I have met some fascinating people on this journey and hopefully brightened peoples day along the way with an upbeat attitude. 

    Thanks to you super ladies who have helped me along the way and a special thanks to CoyoteNV for the kick in the pants when I really didn't want to do rads. 

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  • Hope50
    Hope50 Member Posts: 103
    edited January 2015

    Thank you everyone for your encouragement. I'm so glad I have a place to come to and be heard and understood. You all are so wonderful and so supportive of one another. I'm gonna check out some of those books. We have a warmer weekend ahead, gonna get outside and enjoy and do lots of walking.

    Hope everyone has sweet dreams!

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  • Fionascottie
    Fionascottie Member Posts: 78
    edited January 2015

    question for those of you who are further along in your radiation treatments than I am : Today was treatment number 3 out of a projected 33 ( 6 1/2 weeks, the last 3 days being 'boosts' to the tumor bed area). My breast is feeling sore already...the lower half is tender, bruised feeling. My RO had said that side effects would show up in the third week or so, so I'm wondering what this is. I'll see him next Tuesday for a weekly check and will certainly ask, but I wondered if any if you have had this experience this early. It's not skin related, but internal.

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  • yikes1
    yikes1 Member Posts: 120
    edited January 2015

    To Fionascottie,

    yes, sorry but true for me too.

    My lower half is and has been been very tender. My lumpectomy was on the opposite side of the breast.

    It is internal pain, in addition to skin issues, which are very different.

    I see you had lymph node removal, so to me (but I am not the expert) it makes perfect sense you are having pain.

    I have been told all along my pain is normal, due to nerves, and the radiation excites the nerves even more.

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  • Gongshow16
    Gongshow16 Member Posts: 26
    edited January 2015

    Hope50:great book- the Museum of Extraordinary Things...

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  • JeniferE
    JeniferE Member Posts: 130
    edited January 2015

    CoyoteNV, thank you for keeping track of all of us. Please add me in as beginning rads on Feb. 1st. That may change, but will be close to that date. I appreciate the book ideas and advice.

    I am a left breast gal, and am getting herceptin, so heart protection is uppermost on my mind. My RO said that breath holding will help keep the heart out of harms way. Watched a video link about that, too. Any insights, advice, experiences to share are appreciated.

    Thanks, Jeni

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015

    I'm very appreciative of all the kind words. I just know how important it was to me that our new Winter Warrior Magdalene51 kept our July Chemo Start list updated.  It helped me feel connected to everyone in the group.  Most certainly, it has helped me here also.  I'm really glad to know that it helps you all too.  You are very welcome

    Welcome Mags.  I am so glad that some solutions have been found so you could get started on this part of your treatment plan.  I'm pretty sure if the shoulder responds to the treatment it received, this will be easier than your chemo was.  It is certainly faster. 

    Yikes - You are right - It is not getting easer, but I did not realize that insurance is pulling away from assisting in paying for health specific items like mastectomy bras, and canes or wheel chairs too, you say? Wow.

    About positiveness - I might have said this earlier, but I can't check because if I go back a page I'll lose what I have written. I'm certainly on board with that. My MO is suspicious that I am not telling her everything about how I feel because I don't tell her about any problems - other than a slightly funky right arm. (She thinks its a nerve issue.)  Or, she says, maybe I don't recognize the problems.  Her other patients apparently call her about a laundry list of issues. Other than my regular appointments, she only heard from me one time since last July.  She thought that indicated that there might be a problem.  I told her that I'm just a tough old bird who pushes through stuff.   Do you think she can help my hair grow?  Actually, I adore the woman. She's frank about issues, kind, and concerned. 

    Today was 65 degrees and we have company from Maine who came to thaw out in our sunny desert.  I was physically able to keep up with everyone as we walked around the Valley of Fire State Park.  We'll be out wandering in the sunshine again tomorrow.  I'm really pleased that my energy is coming back. They are thrilled with the warm weather.

    Welcome, JeniferE. We were writing at the same time, and I found your post after I submitted mine.   As I'm sure you are aware, the left side rads are an issue several of the Winter Warriors are dealing with.  You will find good support here with us.

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  • eileenpg
    eileenpg Member Posts: 467
    edited January 2015

    Coyote=On my last chemo day 7 weeks ago when I met with my MO. I have seen him since. he stated"you did so fantastic" He mentioned I never called his office once. I said I would have called if there was a problem. He then went on to say about a positive attitude and mine was one of the best he had ever seen. We did not look for hidden meanings. Isn't that what a psychiatrist is for. Been there. I would have been insulted if he felt I was hiding something. I am old enough to speak my mind and ask questions without feeling intimidated or stupid. I probably would have answered if they asked me what I was hiding."hey,I just did 6 rounds of chemo. I am not exactly at the top of my game." So glad you are getting energy back. I am too. Finally nice to feel normal. Just need my hair. Have fun with your friends. I love where you live.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited January 2015

    I have to say that I have a very positive attitude as well, and while I've certainly shed a tear or two, only one total breakdown (the day I received my biopsy results). Most of the time I believe that I will be completely cured and one rads is over, I can put all this behind me. But sometime I wonder if I am in denial and I'm fooling myself. It is possible that Breast cancer can never be "cured" and this thing is likely to come back and kill me some day. I guess time will tell.

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  • Cath57
    Cath57 Member Posts: 47
    edited January 2015

    Everyone tells me that I have a positive attitude... I just vent & complain here :). Every once in awhile I need an attitude adjustment & have to regroup with an attitude of gratitude. I guess we never know what's going to take us from this earth. One thing I have realized that since my BC diagnosis, no one is exempt from it. I felt like I fit all the criteria that would eliminate BC in my life & lived in the bubble of "it will never happen to me". I now apply it to other areas of my life & am trying to live in the moment , cuz you never know what is around the corner. I realize also that I am a high anxiety/stress type of person & am working on that.... One day at a time

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited January 2015

    Good morning, Winter Warriors. Yesterday I went for my first rads and learned that the nerve block doesn't fix the source of the pain from the positioning. I have to have my arm at 180° and there is a bone spur that hits when I'm in that position. Yesterday's session was nearly half an hour in that position so it was ice when I got home. They've gone ahead and scheduled the rads as if there were no issues, without even talking to me about it, which annoyed me.

    The pain doc did say that he could prescribe a lidoderm patch for local pain, so I'm going to ask for that. I have my second session this afternoon.

    Thank you for your kind words, Coyote, but as I recall you were the one who did the heavy lifting in the July thread as I slipped into chemo fog. You are the awesomest.

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  • yikes1
    yikes1 Member Posts: 120
    edited January 2015

    Hi magdalene51,

    I hate cortisone shots, but I have impingement syndrome of my shoulders, so have dealt with similar issues -- and did have a shot at one point.

    If that is what you are dealing with as well,

    I suggest you see an orthopedic surgeon to be evaluated, and see what your options are.

    A physical therapist may be able to assist.

    If it is possible, IF they will work with you, that maybe you can alter your position somewhat to avoid the bone spur hitting.

    Like, just tweaking a tiny bit so the bones are not hitting each other.

    There is a bursa there so you may be irritating it.

    The lidoderm patch may help the pain, but I think you should have a better solution to avoid aggravating the area and ending up with a frozen shoulder issue.

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  • yikes1
    yikes1 Member Posts: 120
    edited January 2015

    Hi Magdalene51,

    Also, you may need to take an anti-inflammatory medication just prior to radiation so that the should area is less inflamed and irritated.

    This is not just because you have pain, it is to help keep your shoulder working. If the area gets too inflamed from your positioning it may lead to other problems.



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  • yikes1
    yikes1 Member Posts: 120
    edited January 2015

    shoulder area (i wrote should)


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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    mags, Sorry about the pain. At least you may be able to move ahead with rads. The time for treatment should get shorter which may be comforting to know.

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  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited January 2015

    Too right! What a vile way to welcome you back to work. Time to change employers if you cannot get rid of her.

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  • SandyLovesLucy
    SandyLovesLucy Member Posts: 204
    edited January 2015

    Magdalene51, sorry you are having so much pain. I hope they will be able to do more to give you some relief. I've been active on the August chemo board but had lurked on the July board and learned so much from you and the others there.  Thank you! You seem like such a lovely, kind person - I wish you the very best as you get through this next round of treatment.

    Cath57, I completely identify with what you wrote. Everyone sees me as being so positive throughout all of this.  That's true and I have found something to laugh about through the craziness of treatment for the last 7 months, but I have those down moments, too.  If I don't vent them somewhere I go a little nuts! The challenge for me is to feel those feelings, and not stay stuck in them, so I can get back to that positive place again. Also trying to lighten up on the perfectionism, and letting work take over my life. Making more time for family and friends. Amen to one day at a time!


     

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  • Lulubelle1
    Lulubelle1 Member Posts: 9
    edited January 2015

    Rads # 7 today and to top it off this week a root canal. I am so looking forward to the weekend. Now I need to figure out where the weird rash on my legs came from.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited January 2015

    I had my planning appointment today. It went much better than expected. No problems with having my arms above my head. No sharpie marker. I hardly felt the tats. Whole thing took 20 minutes. The doctor anticipates some burning on the side of my Breast. They are actually taping bubble wrap to the side to help reduce the skin fold there. Simulation next Friday, they said that will take an hour. Then I start, and they told me the date, but I forgot!!!

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited January 2015

    Today was just a hair better than yesterday. The positioning didn't take quite as long, and I'm hoping it will improve each time. I also got a chance to visit with the RO about the shoulder issue. She is adamant that the position is necessary in order to get a clear shot at the area. She feels that the rads are absolutely necessary because of the aggressive nature of the tumor. Even though my end of year PET scan was clear, that doesn't mean there aren't a whole bunch of cancer cells lurking about. The rads will reduce the chance of recurrence. So there's no way she's letting me off the hook.

    The problem with the shoulders, especially the left (cancer) side, has been around since 2005. In 2006 I had 2 surgeries to repair the rotator cuff, which had been sliced nearly in half by a bone spur. The 1st surgery failed due to over-aggressive PT. My current orthopedic specialist (who is not a surgeon) has told me that the only thing that can be done is complete shoulder replacements. There is no cartilage on the head of the humerus so every movement is bone on bone. You can actually hear it crunch. But I've not done anything about it because I didn't need to. When I talked to the pain doc the other day he said the only PT that might be helpful would be massage and light stretching. Not strengthening modalities. I've had years of PT with little improvement, finally just gave up. Shoulders – pfft! Who needs them?

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  • Carynbrit
    Carynbrit Member Posts: 51
    edited January 2015

    Hello....

    have to catch up here! but in the meantime.. table altered..machine had addtion onto it..and i am NOW in my last part of Rads.. 4 more to go (boosts totalled 6)..and i am done.. Thursday will be my last one. total of 30..wow..it doesnt seem that long since I started.. ive seen people finish..and people starting off from day 1...what a weird feeling this is..

    Today was my last Friday then... the rad techs are super nice and I had a moment today (teary) and they were talking about support..and i just blurted out i dont HAVE that..and that Thur would pass with no mention..sheesh my hubby doesnt even acknowledge im nearly done! Had a good chat and it turns out the nurse advocate (whom i've never met) has gone through a similar home situation as me..so the rad tech is going to get her to come chat with me.. which is great (shes never had cancer but at least works there and understands that part of it)...

    also on the good news front.... my surgeon/onoclogist is about 1 and a half hours away..its like an all day event going up there.. i spoke with someone here at my local place (10 mins away) about my wanting to move my 'next step' of the 'drug' talk.. there and thats all been sorted out.. the rad/onologist is much more approachable and just has a better personality... plus.. they have seen me.. heck his assistants do the triathlon i do.. so i feel i have a better platform should i have problems with the tamoxifen...and that its not just 'something' or 'normal'..i just need to know its taken seriously.. you know?





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  • CAS4
    CAS4 Member Posts: 54
    edited January 2015

    Carynbrit I just started Tamoxifen and there is a new group here under hormone therapy called "starting Tamoxifen 2015" or something like that- several gals from here have moved over there too- wow, done on Thursday! Congratulations!!! Isn't it amazing to be so close? When I started my 32 I thought I'm gonna be here awhile- I actually go back twice next week to MDA to be there to see women I met that started after me ring that darn bell! Congrats again!

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