Winter 2015-16 RADS

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  • justmaximom15
    justmaximom15 Member Posts: 264
    edited February 2016

    Tomorrow is my last whole breast radiation then I begin my 8 boosts. My RO prescribed lidocaine jelly to mix with my aquaphor and it's either helped or I just can't feel it which is OK lol.

  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    HappyHammer, I'll be on Herceptin through August. I love my infusion nurses and several of the other patients (along with my fantastic MO), so it's really not that bad.

  • gargengirl09
    gargengirl09 Member Posts: 46
    edited February 2016

    I ladies. Had been taking a break. Finished radiation on January 19! Wasn't too bad.

    I had a cough that wouldn't go away, which led to a chest x-ray to rule out pneumonia, which showed soft tissue abnormality. That lead to a CT scan, which led to a PET scan. The Pet scan shows:

    "abnormal hyper-metabolic activity is present T10-T11 vertebral bodies, the right posterior ilium, right ilium adjacent to the acetabulum and left ischium. Abnormal soft tissue activity seen in the hilar lymph nodes."

    I had a bronchoscope with biopsy yesterday. No pathology report yet. Preliminary look didn't show cancer in those lymph nodes.

    My question is, has anyone had a similar reading on a PET scan and had the hip biopsied?

    I'm worn out at this point, and a little worried. I thought I was done with doctor appointments, tests and procedures.

    Positive thoughts and healing thoughts welcome. :-)

    I also cross posted this in the not diagnosed but worried group.

    Thanks!!!

  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited February 2016

    so happy for those of you finishing! Today is 10 of 33 for me. I'm exhausted... My fiance had to drive me the last two days, and I haven't decided about today yet. This sucks.

  • keepwalking
    keepwalking Member Posts: 147
    edited February 2016

    gargengirl - so sorry that you are having to deal with more procedures and questions just when you thought you could have a break and recover quietly. I am sending positive thoughts your way that all of this is just a wild goose chase and that all will be found to be okay. HUGS!

    twnkltoz - I know what you mean about the tiredness. I had a bout of fatigue about half-way through that lasted a few days and then went away (except for just tiring more easily). The last hit after I finished whole breast and started boosts - has lasted a few days and getting better. I hope yours will also get better soon. It does suck when your mind wants to do things and your body doesn't cooperate!

    justmaximom - glad the lidocaine is helping!

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited February 2016

    Keepwalking- YAY! Sorry that you are having some skin issues now but CONGRATS on finishing! Woo-hoo!

    Kate- glad you are having a good experience with the Herceptin only. Love my MO and the nurses, too. Will finish end of May or June. Starting Arimidex Friday and hoping for so SE's.

    Don't know what the new normal will be- taking it day by day- but, agree that reducing stress is going to be a big part of it!

    Catfurr- you are almost there- that is awesome! The Florida trip sounds great and bet you will be all healed and ready to enjoy the sand and sun.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited February 2016

    Gargengirl- so sorry you are having to go through all of these new test and procedures. Sending you positive thoughts. When will you hear back for all of this?

    Lidocaine- well, glad it's working however it is helping, Maximom!

  • mdoc524
    mdoc524 Member Posts: 336
    edited February 2016

    JerseyGirl - Thanks - so don't plan on drinking MO's Kool-Aid on what she thinks my se's should be .. just frustrating sometimes - we should not have to feel like we are not really having the se's we are having ...

    1957-2057 - Glad you are doing well and hope it continues that way for you

    Duzy - Congrats on Day 1 and getting started.. and they really should have music or paintings or something to distract the patients - UGH..

    Hang in there MissV123 - hugs to you - we will Win!!!

    Catfurr - Congrats - WooHoo for tomorrow! Goo luck with the No Stress Zone / No Drama Zone -sounds wonderful :)

    WooHoo Congrats Keepwalking and so sorry you having so many skin issues - hope the calendula works and all heals fast for you! Funny they give you Calendula after and my RO wants me using everyday during treatment .. still amazes me

    justmaximom15 - Yippee - the end is near for you! Good luck with the 8 Boosts and I assume since you needed lidocain you might be having skin issues - if so hope it helps and heals fast

    Gargengirl09 - Congrats and WooHoo on finishing Rads!!! I read your post and the 1st thing I said was "what the ----?" .. So sorry you are going thru all of that and so so many hugs, positive thoughts and prayers the path comes back clear... keep us posted!!

    Twnkltoz - I read your post and was like UGH at only the 10th - so hope it gets better.. I am on #3 and so fatigued but am thinking that is still from only being a month out of chemo .. but I have to say as I am driving home (25 min) I can actually feel tiredness wash over my body

    KateB - Good luck on Day 1 tomorrow - you will do great!

    Have a great rest of the week

    Mary

  • Brimton
    Brimton Member Posts: 87
    edited February 2016
    It is so surreal. You lay on a table position you and then the big machine runs it show. I was told to come in prepared to unbutton and lay down. The tech are sweet enough. I just hope the whole thing works. I'm doing this hold your breath thing....not sounding terribly precise.
    I agree it's a bit psychological. Thought after day one. "ok, well that's done." Then I thought ok but your coming tomorrow tomorrow tomorrow tomorrow tomorrow tomorrow. I'm open to any coping suggestions. I'm not sure I'm family gets it as they go on with day and concerns as usual.
  • Brimton
    Brimton Member Posts: 87
    edited February 2016
    It is so surreal. You lay on a table position you and then the big machine runs it show. I was told to come in prepared to unbutton and lay down. The tech are sweet enough. I just hope the whole thing works. I'm doing this hold your breath thing....not sounding terribly precise.
    I agree it's a bit psychological. Thought after day one. "ok, well that's done." Then I thought ok but your coming tomorrow tomorrow tomorrow tomorrow tomorrow tomorrow. I'm open to any coping suggestions. I'm not sure I'm family gets it as they go on with day and concerns as usual.
  • Kokomo26
    Kokomo26 Member Posts: 64
    edited July 2016

    Fearless195...Happy for you that your 16 treatments are over now. Why is it called the Canadian Fractionation?

  • Duzy
    Duzy Member Posts: 134
    edited February 2016

    keepwalking - congrats on finishing. It seems a ways off for me since I just finished number 2 today so 31 more to go

    Gargengirl09 - so sorry you are having to deal with this. My thoughts are with you for positive results

    Twnkltoz - so sorry for the fatigue. I hope you can get as much rest as possible. I am trying to work full time during treatment so I hope the fatigue is minimal for me. You will get through it.

    Catfurr - A trip sounds wonderful - I hope you are by the ocean and can relax while there

    mdoc524 - I hope your fatigue from chemo gets better soon. It is so hard to move from one treatment to the other without much time in between. Were on the same schedule so positive thoughts for minimal SE from radiation.

    For anyone I missed hope everything is going well and you are getting through each day with minimal SE.

    One question I have is anyone using a cooling towel? If so did you wait until you had some type of symptoms like red or warm skin or do you use it just like the creams to minimize the SE?

  • Kokomo26
    Kokomo26 Member Posts: 64
    edited July 2016

    mdoc524---Thank you for the warm welcome. Sorry I did not reply sooner, somehow I missed seeing so many posts. I see my MO for the first time on Feb 8th for the plan of treatment. I do know for sure I will be having rads but not how many as yet and which type. Very stressful waiting so long to find out. Surgery was Jan 6th. Sincere best wishes to everyone . :-)

  • Fearless1956
    Fearless1956 Member Posts: 106
    edited February 2016

    As usual, this thread moves very fast. I was super busy at work today and had no chance to reply to any of the posts. Sounds like a lot is happening today.

    MissV23 -- Hope you get a new RO that you are comfortable with. That's tough to change right in the middle of things.

    Didel and KateB79 -- Yes, you need to speak up and ask for a bell. I can't tell you how good the simple act of ringing that bell felt.

    Catfurr -- Yay for you and one more day!!! And then a trip to look forward to. That's awesome!

    Keepwalking --- Yay for you on your final day. Welcome to "the other side." I hope your skin heals up soon. Sounds pretty uncomfortable.

    Gardengirl -- Bless your heart. You have been through an ordeal recently. Saying a prayer that you get good results.

    Dorothy26 -- Canadian fractionation was developed in Canada and is approved for US treatment. It is a 16 day treatment plan that delivers higher doses during each treatment compared to the standard six weeks of treatment. From what I learned, it is used most often in women who have undergone breast-conserving surgery for early-stage breast cancer. Some of the other specific guidelines is for diagnosis after the age of 50, patient hasn't had chemotherapy, and no evidence of metastasis. Studies have shown low recurrence outcomes as well as good cosmetic outcomes. It was something I hadn't heard of before either, so I had to read up on it. I liked that it was a shorter treatment plan. I also like it that I don't seem to be having some of the skin issues that I read about here that so many have had. My worse issues are the itching and tender spot under my arm. My RO said the skin issues could get worse over the next couple of weeks before the healing starts, so I'll have to wait and see if that happens or not.

    Hope everyone has a restful and comfortable night. I have an early morning tomorrow with a need to be at work by 5:30 so I'm heading to bed soon.

    Prayers for all,

    Debbie

  • 1957-2057
    1957-2057 Member Posts: 35
    edited February 2016

    #17 for me today so I am officially over the 1/2 way mark. Today I had my treatment in the second rad room, i had one there during my first week. Anyhow as the machine started it's buzz on the wall I saw one of those little signs light up that says beam in use I think. I had to laugh told the tech it made me think of the car wash when it is flashing and saying please pull forward..... Silly how we associate one thing with another. My ceiling has the pretty pink flowered trees as well, must have been the standard sell when they designed our rooms...... This may sound strange but while the beam is buzzing I usually say a small prayer and give thanks that something like this wonderful oversized scary machine may be giving me more time to spend with my family and help to keep this horrible disease away.

    Have a great rest of your week all. I am so proud of all you brave ladies...


    Helen


  • marijen
    marijen Member Posts: 3,731
    edited February 2016

    So is anyone here showing signs of lymphedema or should pain and stiffness from radiation?

  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    First day today.

    I'm sending lots of healing energy to my skin and chest wall! And slathering on the Miaderm. That helps, too. :)

  • SeekingSerenity16
    SeekingSerenity16 Member Posts: 13
    edited February 2016

    Hi everyone, please add me to your group. I had my simulation last week and today I go for my set-up. I was simulated both supine and prone and will find out which position they will have me in for treatments. I'm not sure how many treatments, will find out today and will start 7am next Monday the 8th. I also plan to work full time and am concerned mostly of fatigue. I work from 7:30-6:30 four days a week. I've never posted; but, have been reading various discussion boards since diagnosis. My favorite post was what 1957-2057 posted yesterday so I had to jump in and say thank you for the last few lines about how radiation technology is a blessing and we need to be positive and thankful while we are there...

  • etnasgrl
    etnasgrl Member Posts: 650
    edited February 2016

    I'm having the Canadian fractionation and I'm 41, so maybe that part of the guidelines have changed.
    I'm very grateful that I'm able to do it. So far, my skin has held up remarkably well, given how fair skinned I am. (I was pretty worried about that!)
    I've got 3 more regular treatments left and then 5 boosts. Then, I'm done! WOOT!

  • justmaximom15
    justmaximom15 Member Posts: 264
    edited February 2016

    Thanks Mary! Tomorrow starts the first boost and the tech told me that it would take me a little longer in the morning than normal. I started having skin issues after #16. It got pretty bad by #21 but then I had the weekend to recoup and it seems better this week.

    Dorothy26 - I ordered a cooling cloth and it just arrived a few days ago. I've only used it once and honestly couldn't tell that it helped any more than just a wet cloth. Maybe I'm not whipping it right or something though. My RO told me to soak a soft cloth in Domeboro solution and that helped quite a bit.

  • octogirl
    octogirl Member Posts: 2,804
    edited February 2016

    I had the Canadian version and while I am definitely over 50, I did have chemo prior. I had specifically requested the Canadian protocol (wanted fewer visits, wanted to be done sooner!), and when my MO referred me to the RO, he said I should go with RO's recommendation but that he wasn't sure I was a candidate because of potential skin issues and the size of my breasts (apparently, it is more indicated with small chested women because overall area dosed would be less, thus reducing skin risk). Neither MO nor RO said anything about chemo as a factor but RO also said that he was worried about increased skin issues with shortened version due to the higher doses. So, RO did a sim based on 16 treatments and than ran it by the full Stanford radiation board before starting, which ok'd it (He is Stanford faculty/affiliated). Given the Stanford rads board expertise, I am confident that it was appropriate to my circumstances. As it turned out, I did have some skin problems, but I'd still have chosen it over longer version, especially given the distance I live from the rads facility in a semi-rural area. (The skin issues were manageable, and once I started healing, I have healed quickly).

    Duzy, I did use the cooling towel before I had symptoms, particularly to prevent skin-on-skin contact on the underside of my breast. I didn't use it religiously, however, and that is where I had the worst skin issues. Probably should have rolled up the cooling towel and worn it there every day. (As I said, I am large chested).

    Octogirl

  • octogirl
    octogirl Member Posts: 2,804
    edited February 2016

    Yay for finishing, Keep Walking! Hope you get your energy back soon!

    Hugs,

    Octogirl

  • JOWE
    JOWE Member Posts: 12
    edited February 2016

    Hi everyone I am new to this I am suppose to met with the radiation dr Friday. I have a question I was told the first time on the table to be marked can take awhile. I have back trouble and restless legs I can't lay or sit for very long. I was wondering if anyone have these problems and if I can't lay what will they do?

  • phoebe58
    phoebe58 Member Posts: 193
    edited February 2016

    Hi Marijen - I am doing my range of motion shoulder exercises, yet still find I am getting stiffer with more of a pulling feel. As my breast puffer-fished up almost immediately I was told this is NOT lymphedema as too soon, more of a temporary inflammatory reaction, but after 2/3 treatments sensations began in my bicep -- rather odd - tingly, full, heavy..... and a few days later my rings on same side suddenly very tight so pulled them off [after greasing them up]. So, is this true lymphedema, or due to my puffy breast making the lymph pathways currently struggle more?????? That is the big question. Desperately hope it is temporary:( I also do a daily self manual lymphatic drainage massage to prevent fluid build up on problem side, that I was taught by my great physio.

    YIPEE Congrats all finishers, enjoy your next phase and extra time, ..... can't wait to join you Feb 12.

  • sos1125
    sos1125 Member Posts: 64
    edited February 2016

    JRowe, my center puts a brace under your bentl legs to take pressure off your back. Maybe yours will do the same and you won't have a problem. I'm sure they will work with you to keep things as comfortable as possible.

  • JOWE
    JOWE Member Posts: 12
    edited February 2016

    Thanks sos1125 I guess I am worried about doing it for that long.


  • justmaximom15
    justmaximom15 Member Posts: 264
    edited February 2016

    JRowe, you really aren't on the table very long. I have issues being still also, I toss and turn at night but I've never had a problem on the rads table, actually find it quite relaxing. My treatment center also uses a wedge under my legs and that does help.

  • etnasgrl
    etnasgrl Member Posts: 650
    edited February 2016

    JRowe....my first time on the radiation table for my simulation was about an hour, but I didn't need to lay down the entire time. In between marking my skin, the tech let me sit up, which was nice. (I'm sure you can ask your tech if you can do the same.)
    They also use a wedge under my legs when I lie down and that helps SO much!

    I would explain up front that you have back issues and restless legs, I'm sure that they will do whatever they can to make you as comfortable as possible.

  • Fearless1956
    Fearless1956 Member Posts: 106
    edited February 2016

    Great feedback on the Canadian Fractionation. The only information I knew was what I had read and what my RO had told me. I'm glad to know that it's being used with other types of patients and that some of the criteria has changed. As far as it being only for small chested women, that part didn't apply to me. I'm also fair skinned and I asked my RO about that from the beginning. I know how badly I sunburn due to my fair skin and I was concerned it would be similar, but she told me the fair skin wasn't a factor. Being able to have only 16 treatments was the greatest positive for me. And so far, 2 days after finishing rads, my skin is still doing OK and doesn't seem to be getting any worse (as my RO had "predicted"). The itching is still present but manageable.

    KateB79 --- How did your first day of rads go? I use the Miaderm also and find it to be very soothing.

    JRowe -- My center used the wedge also. As already mentioned by someone, the time on the table is minimal. I was usually in and out in about 15 minutes total (except on days I saw my RO or on days that an additional film was taken). What I hated was having my nose or other body part to start itching while I was on the table and I couldn't scratch. That happened several times and actually became kind of comical to me.

  • Kokomo26
    Kokomo26 Member Posts: 64
    edited July 2016

    Fearless. Thank you for explaining the Canadian Fractionation to me. It makes sense now. Seeking Serenity..I hope they do the simulation in both the supine and prone for me..that sounds like a good idea. Not sure how often that is done though. I too have been reading the various discussion boards since diagnosis (you were 1 day before me) and feel so blessed to have all these wonderful ladies giving advise and sharing while we go through this life changing experience. Thank you all so, so much!


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