Fall 2013 Rads

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    You guy are awesome! Feeling better this evening. Just needed some down time to recover. Love and radiance!

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  • Lav
    Lav Member Posts: 65
    edited October 2013


    Jo6202. Your Us insurance companies seem more lenient infact I expected to be denied d coverage of the Oncotype but weighing the option of the chemo expense which costs more should help change their minds. So fight for it.


    Bounce lol you really crack me up. I felt exactly the same way except I dint think of it as a washing machine but some alien robot trying to squish me from all sides like in scifi movies! Thats how the first day goes and well done witb my 6th today and one gets used to it.


    MsP your an Angel!


    Bluebird youve really been thru alot. I know its easier said than done but try exercising your arm? It helps though what youve gone thru is really alot. Just think positive thoughts and think that this is the end to your treatment. Surgery chemo over and this is d last phase with you kicking this cancer out once and for all!


    SophiaMarie I dint have to go thru chemo and I look at the positive side that God while going thru radiation. I prepared myself once I was diagnosed and as Isaid I tell myself that this yet another test which we need to ace be it chemo radiation or even tamox with its side effects.


    What really surprises me is whether during my 5pm shift or 12pm shift all rad patients are over 60 and 70! Im d only one in my 40's! They are all surprised to know that its me being treated. As I said we all have to go thru our tests in life...

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Lav-I was thinking the same thing about potentially saving the insurance company tens of thousands of dollars in chemo costs plus the fact that I have many other health issues that chemo could really mess up that would cost insurance co even more money. Will discuss with my MO on Thursday. Hopefully she can help them see the light and hopefully I get a low score and won't need chemo.

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013

    SophiaMarie....

    Dont feel guilty that u didnt havt to do chemo!!!

    Personally, when im there and I see someone that has their hair, I am envious..... but not toward them personally..... i am angry at MY cancer for putting me through this and am grateful that not everyone of you has to endure chemo. I realize that no matter how many different treatments we do or how few treatments we do.... we are ALL on this horrible ride together to get better...

    About the emotions.... I think that when I was going through chemo, I had to focus more on feeling better & dealing with all of the SEs & also got a couple good days efery few weeks...

    Rads is EVERYDAY!  No breexcept the weekends & the symptoms (discomfort) grows even on the weekend... since we continue to "cook" even withiut the daily zaps.

    I had #22 today &  broke down crying on the table.... they waited for my breathing to settle before having me hold my breath for my zaps... I dont know why I cried today. I feel like ive been okay for thepast couple weeks??? It just happened... m sure that working full time & being exhausted may have something to do with it.

    Hang in there!!

    Lorrie 22/33

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013

    Not sure how my post showed up, but looks like funky crypt in my pad. Sorry if it went out to you all that way... lol

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  • karibari
    karibari Member Posts: 12
    edited October 2013


    sorry this is going to be a long post... I just caught up with all the posts since Friday and feeling very chatty...


    Rainyday - weird about your insurance not knowing about the snorkel technique - but glad they finally saw the light. I think it's important for we "left-siders" to protect the heart tissue!! Speaking of insurance -


    Jo6202 - my insurance wouldn't pay for the oncotype test either - but my oncologist put me in touch with Genomics and after answering a few basic questions, they paid for it all! I thought for sure I wouldn't qualify for help, but I did.


    Bikergirl - every cancer patient is different - I did 14 of 33 today and radiation is nowhere near as bad as chemo so far. It's mostly psychological for me - I definitely cry a lot more!



    JBDayton - thanks for the info - I think I will end up losing 2 fingernails. The pain was so bad this weekend I was soaking my fingertips in ice water and finally took a pain pill I had left from chemo. I called the chemo oncologist's nurse today and he told me to use castor oil and massage it into my nails and fingertips - gently - before bedtime and wear cotton gloves to let it soak in overnight. I'm going to try it tonight. But I will try to be patient - you are about 6 weeks ahead of me in recovery from chemo. Soooo glad that's over - but amazed at how long it takes to get it all out of the body!!



    Bounce - so glad you're feeling better - I closed my eyes today too - but my right eye was teary by the end of it.



    SophiaMarie - I totally agree with MsPharoah - please don't feel bad about your hair - feel gratitude that you didn't have to do chemo & lose it- I am happy for you!!! I don't feel bad about my baldness - I think it helps me avoid the superwoman syndrome because people can see right off that I've been through chemo. I don't wear a wig - and now that I have a little bit of hair coming in, I hardly ever wear a hat now.



    Bluebird - is Gabopentin otc? I have neuropathy in my feet too and have been taking glutamine but it hasn't helped (although the pain isn't any worse so maybe it is helping?)... but thanks for the tip!

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Kariberi-thanks for the info on Genomics. I found their phone number on line and will ask for their help if MO can't get insurance co to cooperate.

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  • springheart
    springheart Member Posts: 8
    edited October 2013


    you are all so brave. This group is so helpful for supporting one another. I had my simulation today. I wasn't as good with the snorkel breathing today, so now am wondering about how the dailies will go...start tomorrow. They are adding 9 more tats - really?....I must look into that Harley. I have BC/BS and they covered the oncotype dx 100%.... And it paid off - no chemo saving tens of thousands in treatment costs for them... Fight this decision. As my BS said - only a few years ago we threw every treatment tool at BC because we couldn't distinguish what would be most likely to succeed and what was unnecessary ...now we have some light, however dim. I pray more treatment options continue to come to the forefront. I am so grateful that you all are out there listening and sharing. The journey is uniquely our own, but so profoundly similar in so many ways. Radiantly (tomorrow).

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  • cakes
    cakes Member Posts: 157
    edited October 2013


    Oh Bluebird, I just want to give you a big hug! I'll bet they are trying to make sure everything and you are perfectly positioned to make your rad treatments easier. Please know I am thinking of you. Find that "Happy Place" friend.


    Regarding the Oncotype DX, BCBS did pay for most of my test and Genomics did offer to help pay for the $400 not covered by insurance if I gave them financial information. We didn't want to give out our financial info so we paid the $400. I would push BCBS to reconsider. I had to bug the heck out of them and it worked.


    Keep your chins up dear Radiant Ladies. You can do this.

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  • McKatherine
    McKatherine Member Posts: 300
    edited October 2013


    Just getting caught up. :)


    Imamom - I didn't think I was getting boosts, but found out when I met with my RO last week that if your skin is doing okay at five weeks, they like to add boots to the mastectomy scar. So, I'm now doing 33 instead of just 28.


    Karibari - chemo did a number on my nails. None of them fell off - but it was dicey there for a while. I keep thinking they've grown past the line from my 6th chemo, but when I start to let them get the tiniest bit long (and that's definitely relative), they start lifting again. I guess I have a few more weeks of keeping them cut really short.




    Bounce - "Another One Bites the Dust"? Too funny! I love all the crazy music they have playing in the treatment room. It's like a little musical journey every day. Although if they play the same thing for a few days in a row, I can tell if they're running ahead or behind schedule by which sings are playing. :)


    Kirklandgal - I had throat pain the first few weeks, but it's been better the past couple of weeks. I'm turning my head as far to the right as I can now. My RO said that those nodes are so close to your throat that it's possible they are nicking it with the beam.


    I finally realized that I was having a hard time staying hydrated. It has made a huge difference in how I feel now that I'm forcing myself to drink plenty of water every day. :)


    Honeybear - maybe I'm weird, but since my surgery I don't feel like I'm flashing people when my shirt is off. My tissue-expander foobs are so strange looking they don't feel like real breasts unless I have clothes on. :/


    Sophia- don't feel bad about your hair!! Enjoy it and love on it a little extra for those of us waiting for ours to grow! ;)

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  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Bluebird144 - It sounds too hard - ask you RO what can be done to help the situation. Explain what you are going through. The techs must hear from you what you are going through otherwise they will presume you are OK. Maybe RO will have some ideas. I hope so. Even a small break during treatments to stretch and get comfortable again before going on. 50 minutes!

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    The techs are very sympathetic and always tell me I'm doing a great job, and try to be encouraging. They say it will get quicker. I sure hope so! I do plan to talk to the doctor on Thursday when I see her.


    Is anyone wearing a lymphedema sleeve to try to prevent lymphedema?

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Hello brilliant ones!


    This is MsP checking in from the other side of radiation land, and reporting that all is well. Just so you don't think I am a totally optimistic person who never gets emotional, I will admit that when the tech asked me what I was going to do to celebrate, I said "I'm not going to celebrate anything cancer-related" and proceeded to cry profusely. But she forced me on the table and rubber banded my feet together for my last boost and off I went to see the doctor who pronounced me cured. (Why do they do that???) LOL


    Just to provide a history of my treatment for those starting and maybe wondering what they might expect. I had my 28 rads in the prone postiion, 6 boosts supine, no radiation to the axilla. I had read that we large breasted women (not bragging...they are practically down to my knees) and those of us who sunburn easily have a rough go of it. That was not so in my case, so if you are worried, try not to anticipate a problem. Because I was prone, I had less radiation to the armpit and more to the cleavage. About treatment 12, I started getting red and itchy but I was not sore. I could wear soft bras and I worked every day. About treatment 10, it was getting redder and more tender, but still doing fine. The worst time was around treatment 26 but still I did fine. I used Aquafor after the treatment and Aloe Gel at night. The boosts were scary but easy. I am redder there, but not sore. I am definitely tired but maybe some of that was to get my husband to cook and clean up after dinner (teehee) I definitely haven't had any "collapsing" fatigue.


    So since I have graduated to the fully radiated and am now fully radiant, I wanted to give you some information about what that means. Being radiant means sending out light, shining or glowing brightly. And a radiant person is one who exudes great joy, love or health.


    That's us! Exuding great joy, love to all and health...the most important of all. I'll be watching from the sidelines. Just like the marines, no one gets left behind.


    Love, MsP

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    MsP - I plan to celebrate by burning all these uni bras, creams, cancer books, phamplets and stained t-shirts!

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  • LisaSp
    LisaSp Member Posts: 253
    edited October 2013


    Thank you everyone who shared their coming back from chemo SEs stories. I appreciate it. So now I'm two weeks out from my last chemo and happily getting better every day.


    Now I have port removal to look forward to on Friday then my first rads Monday. I'm scared, hope all goes well. Love to you all.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Jo6202, Too, too funny! I'll bet if we put our heads together, we could come up with some other things to burn. How about the horrendous stack of Explanation of Benefits that I get from the Ins company....one for each radiation treatment? Are you kidding me?? I'm going to burn my Hat with Hair just as soon as I can too!


    MsP

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  • honeybair
    honeybair Member Posts: 746
    edited October 2013


    Blue bird, 59 minutes with your arm up? How in the world do you do it? Mine are up about 15 minutes which is torture enough.


    Today I refused rads until I see my RO tomorrow. My skin is pink in places that I just don't understand and tomorrow I had better get some good answers. I am supposed to get rads to right mastectomy area, right arm pit where nodes were removed and right clavicular area, yet I am pink all the way across the left part of my chest and on both sides of my throat though I turn my head to the left to avoid damaging my esophagus. My techs could not explain why I was pink there when I shared with them what my RO told me last week about exactly what fields were to be radiated. Both of them said they had never seen this before. I am worried and frightened and hoping that I am not being radiated in an in appropriate field. WE are told that when we receive our treatments it will diminish a recurrence of our cancer by 70%, so with odds like that, we consent. Now I find myself wondering if my RO has messed up. I have noticed more problems with swallowing. Seems food get caught in my esophagus more easily. I have completed 11 treatments. Wish I knew where to look to get more info on this subject.


    Hope none of you face such uncertainty as this and that your treatments go well.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Honeybair, Yikes, you are right to call a halt to the process until you have verification. I know this sounds stupid, but please try to take it easy until you get some answers. And if this turns out to be something the techs could have handled, shame on them for not being able to assist you! Let us know how this turns out/


    Lisasp, so glad you are feeling better. We'll be with you through your treatment. Hugs!


    MsP

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  • Lav
    Lav Member Posts: 65
    edited October 2013


    Bluebird hope your better today? Day 7 and I dont know if its because Im suppose to get my periods day after but Im already sore and sensitive on my left breast.


    Honeybair i felt it the first day that I couldnt swallow well and I even told my doc that and he said it definitely wasnt due to the rads. But i dint have that reaction anymore so I dint say anything.


    Do we really have ti wear cotton only? Has anyone tried any other softer fabric without getting any reaction? Hugs to all your fighters and warriors out there!

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  • Lav
    Lav Member Posts: 65
    edited October 2013


    Bluebird never heard of the lymphedema sleeve I will ask my doc tom. Anyone else heard of this?

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013

    Honybear.... im gkad u are ginna talk to dr before continuing. My field on my left breast is chrystal clear by the burns that nothing is hitting my right one.... its a straight line between them red on left, white skin on right. Let us know what your RO says.

    Lav.... find the softes material you can. Whatever is most comfy for u. Someone here suggested costco brand camisoles.  I biught a bundke of them and they are awesome. I turn them inside iut so the seam doesnt rub under my arm.

    Had 23 of 33 today.... & apt with my other onc to prescribe my tamoxifen.  I read, on a thread here at BCorg about the different brands and was able to get a local pharmacy here to special order it for me. My pharmacy of iver 20 years refused, so I guess they just lost a customer!

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited October 2013


    I was told that anyone who had lymph nodes removed and radiation is at risk for lymphedema and to wear a compression sleeve. I got fitted for one and have it, but I'm not good at wearing it as I'm supposed to.


    Had another breakdown today. It was over an hour today. I held my position for over 20 minutes before they even got started. Then after a few minutes they stopped. Finally someone came out and told me they were having a problem with the computers. I held the position another 20 minutes and then they came out and told me I could put my arm down. By this time I was in tears. It's as close to torture as a person can be subjected to. After 10 minutes they came out, repositioned my arm and started rads again. I was falling apart by the end of it. They noticed my leaky eyes and asked if I was okay and I tried to joke about it being my "radiation allergies". I left for the dressing room and one of the techs followed me and asked if I was okay and I had a complete breakdown. I told them I couldn't do this any longer. An hour is too long, let alone over an hour. She apologized and said they had someone new at the controls. I am going to have to talk to them tomorrow and tell them that I only want experienced people and it has to be kept to under 30 minutes or I'm not going though with it any longer.

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Lav - my friend who had bc 15 years ago had a bad fall last year on the side where her cancer and lymph nodes were removed and she got lymphedema from that injury and now has to wear one of those sleeves because her arm swells everyday.

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    Bluebird-that is just beyond what anyone should have to endure! Stick to your resolve and don't let them put you through that again. Is your RO aware of this happening? Be sure he/she knows.

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  • Lav
    Lav Member Posts: 65
    edited October 2013


    Thanks ladies so I only need d sleeve if rads are around d area of the nodes right? Im not not receiving any radiation around that area its mostly d left breast d square of it.


    Bluebird I suggest you speak to someone incharge a person whos responsible for that dept. I dont think its right of them to be using a new person and experiment on you with your arm up for over an hour! Its like theyve made you into a guinea pig at your expense.


    They should try to make it as quick as possible understanding about the pain its causing you. When they do d simulation which accdng to my doc its suppose to be 4 times in d first week then only once a week, it takes 30 mins at d most. And when they do the rads without simulationion test its 15 minutes max! My heart goes out to you. I hope you can get this resolved with someone who knows what they are doing. My doctor has to be present while my rads are being done. Seems thats d law where I live.


    goodluck for tom!

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  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013

    Rainyday- I just finished RADS 3 weeks ago for return of ER pos BC . Mine has been on the right side near the collar bone and close to the main artery and vein so surgery not an option. The reason for extra care by  your R O is that the heart is in the left chest and radiation can cause some changes in the underlying organs. Lungs and heart in particular.  

    For all of you just starting , even though the time to the end after 6 weeks goes by faster than chemo it is still not a " breeze" . Yes avoid the sun on your Rads exposed skin. I tookmy DGD out to ride her scooter and quickly realized being in the sun was burning more. Once in the shade I was fine.

    For me the worst burn time was 1-2 weeks after the last treatment. I had to call the RO to ask what to do. They had told me just to be re-seen in 1 month after the end date.

    I used pure 100%  Aloe until peeling started then a cortisone cream and after burning completely goes the maybe some long term vitamin cream / lotion. My rads area involves about 12 inch on my back which is hard to reach. ( I live alone- so nice spouse to do it I'm afraid. 

    I was so lucky not having to go to work thru it as the biggest issue was - fatigue. Gentle hugs to all.

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  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Bluebird144 - You are a human being just like everyone else. Please please don't make light of your pain to the techs by saying its your radiation allergies. If you do that they think you can cope. Do not quit this important stage of the treatment. Insist on someone who knows what they are doing being in control when its your turn. You have every right to not be tortured. Speak to the techs, the RO, hell - go to the head of the hospital if you must. You are valuable and must believe it to have the strength to demand and get better treatment. Lots of us think we have to suffer in silence and sometimes thats true - but when there is a way to make things a lot better a lot quicker silence and suffering are not virtues - just pain. Cry and scream and make a fuss.

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013

    Bluebird..... im so sorry for your breakdown! Ive had a few during my rads! Yesterday was one.... I couldnt stop crying if my life ddpended on it (good thing it doesnt). Today was better.they just dont get that weve been in "treatment, surgeries, chemo, biopsies, etc.... for months"

    When I broke down yesterday (#22) I felt zo stupid, but I couldnt stop crying... all the way to my car and then all the way home.... I couldnt stop! Today, when they came to get me, I apologized for my melt down yesterday & they just were wonderful! I love the rads group at my hospital!

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited October 2013

    I had a meet with my chemo dr and my rads dr today & told dB them both, chemo was by far worse.... but rads has been worse emotionally.... 

    It was a NuRSE that finally validated my comments.... that our bodies can take a lickin... but its the soul that gets dragged down the most.... try to on keep the soul/emotional well being healthy!

    Im trying....

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  • jbdayton
    jbdayton Member Posts: 700
    edited October 2013


    Wow, I am feeling very fortunate. Had #10 today just a little pink in the areas I expected. It takes less than 10 minutes in the rads room, except once a week when they do the X-rays.


    Bluebird I notice you are getting 3D conformal rads how many sessions? I would definitely have a discussion with your RO before continuing. I would think for a 30 minute normal treatment you should not be expected to double the time for trainees.


    Honeybair I agree I would do no more treatments until RO can assess the situation. One of my techs made the comment "there is no taking back a shot of rads to the wrong area" when they were explaining how important it was to remain still. Hope there is a good explanation and everything is set up properly. Peace of mind is so important.


    MsP so glad you are through and have given us encouragement that the end is in sight and we can make it through and recover then be there for the gals behind us.


    Jo did you have any luck contacting genomics?


    Hugs to everyone tomorrow and the rest of the week.

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