Starting Radiation October 2017

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    i_brain. Interesting on exercise and skin during rads.

    I work 10 hour days so wondering how to include lots of walking on a daily basis, work, do rads, run a household. One day at a time, I suppose

    Thanks for the info

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    LoJo100- thanks for the update with rad #4

    I have Eucerin at home already. Think I will check out the Miaderm

    Do you have to shower before each dad to make sure any lotions are gone?

  • LoJo100
    LoJo100 Member Posts: 123
    edited October 2017

    i_brain - I hadn't heard the skin benefits with exercise, but my RO encourages exercise, even just a 20-30 minute walk for fatigue. Let's hope it applies to skin irritation, as well!!

    DodgersGirl - The only thing I was told is that I'm NOT to put on any lotions, creams, deodorant 3 hours prior to treatment. So, I don't take a shower in the morning, go to treatment, put on lotion, work, put on lotion in the afternoon, go for a walk in the late afternoon, take a shower in the early evening, then apply lotion one more time (which is about 10-12 hours, at least, before treatment).

    So far so good!


  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    LoJo100- thank you for that explanation about applying lotions and showers.

  • Pdc
    Pdc Member Posts: 8
    edited October 2017

    Tomorrow will be my last treatment on the right side with SAVI, and I will be free of the catheter tomorrow afternoon! Woohoo!!!

    It has been easy and painless. I recommend it to anyone eligible for it.

    On Monday, I will start external beam radiation on the left side for 5 weeks.


  • Castigame
    Castigame Member Posts: 752
    edited October 2017

    Pdc,

    You are superwoman. Be gentle and strong as possible.


  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    Pdc-- welcome!

    I don't think my rad center has SAVI as an option yet. Sounds really interesting

    Good luck with the next 5 weeks of rads.

  • DawnP64
    DawnP64 Member Posts: 25
    edited October 2017

    Hi All,

    I also started radiation this week, 5 treatments down. I got pretty frustrated this week when my RO told me that the 25-28 treatments that I was scheduled for did not include the additional 5 days of boost. We started out planning for 4 weeks, then 5-5.5 weeks, now it's 6.5 weeks. As frustrating as that is, I have to tell myself those additional treatments might be the ones that end up saving my life.

    I'm 5 weeks post-chemo & have been feeling pretty good. I've been tired this week, but during chemo I reduced my work schedule to 6 hours/day & have gone back to about 9 hours/day, so it may be more related to that than the radiation.

    I'm using both Aquafor and Remedy skin repairing cream. I've noticed itchiness during the day, but it resolves itself by the following morning.

    Dawn



  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    Dawn- thanks for sharing about the boosts not counted with number of rads. I am going to ask my RO that very question next week so I will know what I am "in" for

  • MCOlivia
    MCOlivia Member Posts: 27
    edited October 2017

    Dodgegirl, thank you for creating this group. I finished Chemo on June 30th, had right MX on 7/28. Got an infection which led to another stop in the OR where PS had to re-open the incision to clean it, drain all the liquid, then change the TE. It delayed start of rad. I start my rad monday 10/9, I’ll have 30 sessions.

    Nurse said I can use Aquaphor as soon as dads start, but during dry run test, the radiation therapist said not to use any until after the 2nd week. Ha! She said anything applied will remove all the margkings and the clear stickers. Well, I rather have them redo the markings than having burns rom discomfort. Thoughts? Please advise.

    Thanks, MC

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    MCOlivia - glad you joined our group. Together we can do this!

    I haven't met with my RO yet...that meeting will be next week so I haven't been told yet about what he says I can and shouldn't do yet reference lotions. Hopefully others here can reply to your question.


  • DawnP64
    DawnP64 Member Posts: 25
    edited October 2017

    Hi McOlivia,

    I have 3 tattoos (freckle-sized) that took the place of the clear stickers, so I don't need to worry about erasing the marks. From others I've heard from, I thought this was standard practice. It would seem like they would need to have your markings in place for the whole treatment time, so I wonder why they're not concerned that the lotions would remove them after 2 weeks. I hope you get clearer instructions, we don't need conflicting information on top of everything else.

  • MCOlivia
    MCOlivia Member Posts: 27
    edited October 2017

    Thanks Dodgergirl and DawnP64. I’ll have to ask the RO. I have 3 tattoos marks also, covered with the clear stickers. And a bunch of blue and red lines they drew with markers. It’s staining my sport bras and clothing, so I guess it won’t say for long.

    Thanks to all the other ladies. I bought 99% aloe gel and Aquaphor, ordered Miaderm through Amazon.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited October 2017

    Hi: Will probably be starting towards the end of October. Last chemo was Sept 30 and I'm still struggling with side effects. Hopefully by the end of October I'll be able to start.

    I had my first mapping done on Sept 18. My follow up was Oct 6, seven days after the last chemo. Almost fell off the table because I was so weak in the muscles. Proud of myself for making it in there. All three tattoos are done, can barely see them, didn't hurt. Simulation is complete, just waiting on a phone to say when I start.

    When I met with my RO she had never heard of green tea. But then she also had no clue as to which vitamins were antioxidants. She doesn't want me taking any Vitamin E or C. She told me I could use anything I want before, or after my treatments, including deodorant except for Vitamin E. Seems odd with everything I've read here.

    I'm getting both sides radiated and lymph nodes on left side. Only 20 treatments. RO said new studies indicate that anything over 16 is overkill. But she's not comfortable with only 16 so she's giving me 20. I'll take that 20!

    I've been practicing holding my breath for 20 seconds and so far doing okay holding it for 30 or more.

    It's so strange how everyone's RO has different ideas and the way things are done.

    Now it's hurry up and wait!

  • Gigilala
    Gigilala Member Posts: 148
    edited October 2017

    hi ladies

    My last chemo was June 27 I had bilateral mastectomy July 25 and I have 3 more surgeries ( I know I'm not lucky)

    For my last surgery I had an infection on the right side my surgeon remove the TE

    It delayed start of radiation, last week I had marking

    I start radiation soon



  • utjoy
    utjoy Member Posts: 56
    edited October 2017

    We likely have all heard of the 'overkill' stories...that is my worst fear. My cousin had colon cancer and they literally melted her inside with too much radiation, she couldn't do chemo because of a congenial heart condition, she tried and was affected after just a few treatments so they did extra rads. Our neighbor had throat cancer and rads left him without a voice. Therefore...I would love to see more on this issue...I'm due for 28 rads starting the 23rd.

    Anyone have any info on the 'new studies indicating that anything over 16 is overkill'?

  • Gigilala
    Gigilala Member Posts: 148
    edited October 2017

    I don't know about over 16 treatment is " overkill "

    My Ro told me I will have 30

  • Teach70
    Teach70 Member Posts: 64
    edited October 2017

    I am beginning rads tomorrow. I will have 25 regular rads and 5 boosts. I have my bras, body wash, deodorant, miaderm, cortisone, emu oil and pure aloe gel (refrigerated) ready to go. Sure hope I am not forgetting anything.I will go everyday @ 4:00 so I can still teach everyday. Best of luck to all!

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    Teach70- Sending you positive thoughts as you start rads tomorrow

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited October 2017

    Interesting that everyone’s treatment is different but then each person’s cancer diagnosis is different.

    Here’s a link I found to one study but it deals with early stage bc.

    https://www.cbsnews.com/news/are-some-breast-cancer-patients-getting-too-much-radiation/

    Maybe this is why I’m only getting 20? Nothing was mentioned about boosts either. Does it also depend on the intensity? I realize I really don’t know too much about the radiation side.

    Teach 70: sounds like you’ve got everything ready to go. Before you know, it’ll be over.

  • Snazzyiron
    Snazzyiron Member Posts: 19
    edited October 2017

    Hi,  I am starting rad at the end of October.  I saw some people mentioned tattooing.  Am I going to get an actual Tatoo?  I confess I have read so much about my biopsies and surgeries that I have ignored radiation.  Does radiation hurt?  Does mapping hurt?  My surgeon told me to spray with green tea.  How long does each visit take?  Ant advise would be so welcome.   Thanks!

  • SpeedyTeach
    SpeedyTeach Member Posts: 21
    edited October 2017

    Hi everyone I will be starting my radiation TX's today. My mapping session was on 9/28 with tattoos put on at that time. Honestly the tattoos, hardly felt it at all. Reminded me some of allergy testing on the skin. My dry run was Friday to make sure everything lined up properly-took about a half hour and rad onc said today should go faster. Originally it was planned to do 25 whole breast and 5 boost but my rad onc informed me at mapping session that the new recommendation was 16 whole breast and 5 boost in the prone (stomach) position.

    I go to a large breast center and have to drive 30 mins so the drive will be a bear and hope I can do it every day without someone needing to drive me. I'm also scared of skin side effects since I'm very fair and sensitive to everything. I have a rash on my face still from taxol that won't go away-ugh. They gave me a lotion spray to put on 4 times a day, so hopefully it works.

    Wishing everyone minimal SE as we go through this journey.


  • annwill64
    annwill64 Member Posts: 16
    edited October 2017

    Hello, I am starting Radiation most likely Oct. 23. I am anxious but trying to be thankful that they have advances that can help us to fight reoccurrence. I hope that you are doing well. I see that you have had chemo, I did not have to go through that, I am also wondering about the drug they want me to take after I complete radiation. Arimidex, I have seen so many bad post about it?? Will you be taking some kind of pill therapy?

  • MCOlivia
    MCOlivia Member Posts: 27
    edited October 2017

    Good morning to all,

    Wishing you all a good week with your radiation therapy sessions. May God guise us all through this ordeal. All is well.

    Best, MC

  • Castigame
    Castigame Member Posts: 752
    edited October 2017

    This is strictly me. Based on my profile you know I sure was zapped on my right side w underarm. My left side was saved due to 1 cm margin and no pos node.

    Done w 30 rads. 5 of 30 were boosts. Tattos are more like teeny tiny dots the techs plant. No anethesia needed.If you have nodes removed you may feel tad bit sensitive around tattos. Mapping/simulation could take more than an hr. Actual Zapping sessions are very short. I spent 1 hr round trip to get 5 min on the table. Walked min 2 miles every day. The big thing for me was fatigue coming over suddenly. But then again I had min two appts every day.Skin reaction wise every one is diff. I had very faint pinkishness half way. When it was done. My area was definitely pink. No blister or raw spots. But as soon as done, two small blisters appeared on one at a time. And my underarm was raw. It took about 10 days for heat, raw spots scabbed to disappear. Everyone uses diff moisturizer. I only used refridgerated aloe gel. Golden rule is no top as much as possible. Or loose top as possible. You have to let the heat out which you get from radiation. The entire 30 sessions were hot and annoying.


    General difficulty curve for me was Definitely manageable to half way.

    After half way things get rough.

    Right after first boost, it took another level for worse.

    Second thru last boosts were real smooth and breezy

    After completion my body probably got angry at me by acting up two notches. After two wks, every thing calmed down. I even felt swelling dropping drastically.

    Lastly, even though many people say radiation facilities are the same. No I begged to differ. I searched facitilies near home..Turned out there was a brand new chemo rad place by work. The place had newest and greatest machine. I was fortunate enough to see the techs fussing over 2mm being off.


  • FelineMum
    FelineMum Member Posts: 141
    edited October 2017

    Hello!

    I'll be starting rads this month or in early November. I meet with one of my ROs on Friday for a pre-rads check-up. I met with this RO's partner in August right after my BMX for a full physical and to discuss my treatment, so I don't know what this meeting is for. I had to wait for my TEs to be filled before returning for any prep work. As of last week, they're done. But my impression from the receptionist is that this is another full physical exam. Um. I just had blood work for a BS appointment this week. Which means I'll also be seeing my BS this week. The main difference is the expanders are filled. I do take Xeloda, but we knew I'd be starting on it back in August.

    33 sessions over 6 1/2 weeks is what the RO said in August. He said to expect radiation pneumonia and some permanent lung damage due to the locations being targeted. It's my left side. The RO didn't think my heart would be in the way, but they need to do cat scans to be certain. If my heart's placement interferes, I'll need to go elsewhere because this center doesn't have the right equipment to avoid heart damage. It's an hour from where I live. The nearest one with more advanced machines is 90 minutes/each way.

    I just want to get started. I'm going to need a few days off at the end of the month and a couple more days in both November and (if it goes that far) December for non-cancer-related medical procedures. I know it's not ideal, but that's life. And I want to move forward with my life.

    I started out not wanting to do rads at all. But I'm TN and didn't have cPR, so anything that raises my odds of no recurrence is happening. The Xeloda causes sun sensitivity, so my rads "sunburn" likely will be worse. I've already got a jumbo size Fruit of the Earth jug of pure aloe vera (with pump!). I remember the RO saying Aquaphor and Eucerin are good too.I have Tom's of Maine sensitive skin soap (unscented beauty bar with chamomile) and I wonder if that will be good for showers?

    I don't want to give up antiperspirant. I've read it isn't necessary to do so, but not all ROs agree. I come from a long line of people who sweat a lot. I don't want to relive puberty, pit stains or BO.

    And that's my rambling introduction!

  • Castigame
    Castigame Member Posts: 752
    edited October 2017

    felinemum,

    One of the reasons I fared well w rads was I had long wknd at

    Beg of 4th wk (holiday)

    Beg of 5th wk (drs appt)

    And beg of 6th wk(hurricane delay)

    Because seond half of rads was a lot harder on me and those long wknds gave me just enough break.

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    pink_is_my_colour - glad you joined this forum. Interesting commets around 16 vs 30 treatmets. Wonder if there is such a thing as dosage strength for rads? Maybe 20 rad treatments at a different strength has shown to be as effective as 30 treatments at a lower strength? Thinking like dose dense chemo .....but having NO knowledge of radiation treatments, maybe there isn't a strength difference?


    Gigilala - also want to welcome you to our group. No one wants to be here, I know, but I think we all find strength knowing we are not alone in our journey. Hope all is healing well from your surgeries and that you are strong and ready for this next leg of the trip. Please let us know when you have a start date.


    SnazzyIron - welcome to this October thread. I feel much like you described. I have read a lot about the chemo and surgery aspect but not so much about rads. For me, I think it is because rads concern me the most out of the 3 big cancer treatments. I typically like to know all I can about the phase of treatment I am in but there is something scary about radiation that makes learning all about it something I am not facing head on.


    SpeedyTeach -- Welcome to this October group. Good luck today with the start of your radiation. Hoping we all have minimal SEs, too. I have a meeting with RO this week to get my rad process started. Assuming I will have mapping. I am going to ask about the 16 treatments vs the greater number. Thanks for sharing your experiences so far.


    annwill64 -- Welcome to this group. Glad you mentioned the reason we are going through radiation. I need to remind myself as I want to try to keep a positive attitude about this step....trying to lower the chances of recurrence. I think that any of us with a hormone positive type of cancer will be placed on Tamoxifen (if pre-menopause) or Arimidex (if post menopause) for 5-10 years as those pills are designed to help stop our cancers from feeding off the estrogen in our own bodies. Some people seem to have tough sounding SEs while others do not. I already have painful arthiritis in my hands so hoping I can tolerate Arimidex fairly well. My MO has also put me in on a clinicl trail to take everolimus with Arimidex (or a placebo)

    FelineMum -- glad you are here, too....lots of us to share what is happening during our rads trip. I sure hope they are able to do rads without any heart damage. I will have treatment on right side so that shouldn't be an issue for me but will ask my RO about radiation pneumonia. I have not heard that term mentioned before. I have asthma and so when I have a lung issue, I cough so hard for a very long time. Really hope to avoid radiation pneumonia. I think we will all be learning what works for us and what doesn't regarding lotions and deoderants.

    Castigame - glad you are here and hope you will continue to post as we all make the journey you have already completed.

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    utjoy - found this story here on BCO Recurrence Risk Same for Standard, Lower-Dose Radiation Schedules

    it seems to have been a Canadian study on women who had lumpectomies.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    First day posting and have a question. My lumpectomy is scheduled for later this week. I was told that after I heal from that surgery that I will begin radiation. Just wondering about how long that is. And when should I be meeting with the radiology oncologist? Thanks so much.

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