starting rads feb 2017

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited February 2017

    Hello ladies,

    May I join you?

    Looks like I am set for 25 sessions - chest wall and supraclavicular nodes starting next week.

    I have been told I will be breath holding - left side - and will be wrapped in a silicon like product called Mepitel which apparently may protect your skin from blistering - the upshot is that it stays on - and you are meant to try and not get it wet.


    http://www.molnlycke.com/news-media/press-releases/a-world-first-preventing-skin-reactions-during-radiation-therapy/#close

    Apparently it is a New Zealand product, and provided you manage to keep it on you have good results.

    I have also been told that the first two weeks and generally smooth and week following your last rad session is the worst in terms of skin symptoms.

    Well since I will not return to work until it's done - I better find a nice place near to munch by the river after its done.


  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    Hang in there BeachBabyK! ❤️❤️


  • Ruby3813
    Ruby3813 Member Posts: 96
    edited February 2017

    Mind if I join you ladies? Just got my official diagnosis yesterday. I had my lumpectomy last Monday, 2/13 and will be having lymph node removal/testing this Monday. Sometime after that, I'll be starting rads. Don't know all the ins and outs yet, or even who my rads dr will be, but I'm ready to get this show on the road!

    Question: For those already undergoing rads treatment, do you think it's better to do them in the morning, mid-day, or late afternoon? What's your preference and why?

    Thanks!

  • Fightingirl
    Fightingirl Member Posts: 409
    edited February 2017

    Welcome Ruby3813! Sorry you find yourself here but looks like you are cruising along with treatment! There are multiple types of radiation treatment...do you know if you will be doing traditional external beam or brachytherapy?

    I did brachytherapy which is 5 days of radiation and is done 2 x per day.

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    Hi Ruby - I just finished my first week of rads. I asked for morning around 10ish and they were able to accommodate me except for 4 days. I prefer mornings so I can work out and shower and I am ready to go in. If I were to do the rads late afternoon I would be thinking about the appt. all day. This way it is out of the way and I am free for the rest of the day.

  • Elem
    Elem Member Posts: 327
    edited February 2017

    Hi Ruby3813,

    Welcome and I am 4 sessions in and do them in thecearly morning at 9 am . I like it early and then you have your day to do everything else . I only work Fri -Sat and Sun so Friday I go in a 8 am . Then go right back to work . It works for me this way so far . I hope I do not experience any fatigue ir burns on the skin . I am to have 20 treatments .Good luck with yours


  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    already 4 sessions elem - wow!! how are you feeling? i did my final plan verification today and was anxious to get going and get this all done with!! what are you using after your sessions? my hospital recommends calendula cream, but say it won't prevent anything. use it if you start getting red or uncomfortable. i wonder if should use aloe vera and aquaphor after each session routinely like i had read other girls do. im more worried about fatigue, but we shall see how it goes. im glad you are tolerating it so well so far!! keep up the good work!!

    edit to answer ruby - im mostly going to do midday sessions bc i have a bit of commute to the hospital and want to sleep in and miss rush hour traffic. then ill just work in the afternoons/early evenings from home.

  • Elem
    Elem Member Posts: 327
    edited February 2017

    hi Annoyingboob,

    i know right .. 4 sessions down . So far no ill effects and they gave me a cream called vanicream . Free of dyes fragrance, lanolin , parabens and formaldehydes . That is what is says on the tube! But as for now , I have no side effects . I hope to remain side effect free. I have a couple of aloe vera plants , maybe I will try that as well . Just so glad to have this group of friends here . Just could not imagine this ride without you all . Many thanks plus hugs and kisses

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    My doctor recommened Cetaphil. So far, no redness.

    I did miss a day of rads due to either food poisoning or stomach bug. OMG I was so sick all Wednesday night through 6AM Thursday and still feel like crap. I thought I would be feeling better by now but still not eating anything besides toast, oatmeal and applesauce. Bad timing.

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    hi girls!

    have done 8 out of 20 sessions. No real issues. I get pictures(no tattoos ) usually every day before treatment starts. I've timed the actual zapping....30 seconds 2x. Takes longer to get in position than the actual treatment. Never thought radiation would be easy. I still can't believe when I walk inot the cancer center I'm the one with cancer.

    Best to my February girls

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    Mamasha - I think the same thing....I can't believe I have breast cancer. So far it has been uneventful but I'm only 4/23. The worst part for me- as I mentioned before- is waiting in the reception area to be called for my turn. The longest I've waited is 20 minutes but the average is 10. I read, I believe in the "Starting Rads in Jan 2017" thread, that a woman started a journal about her experiences and I think that may help me while waiting. Will keep me busy at least.

  • Ruby3813
    Ruby3813 Member Posts: 96
    edited February 2017

    Thanks for the welcome, everyone!

    I'm with the rest of you. I'm still thinking...'Wait, I have breast cancer? That can't be right. I don't feel like I have cancer. Are you sure??'.

    And how many of us got the news over the phone? "The test results didn't come back as good as we'd hope for.". According to all the movies, I'm supposed to be in his office with dramatic music playing in the background when he drops the bomb. But breast cancer is almost as prevalent as the common cold nowadays and treatment is so superior to what it used to be, that we have so much of a better chance.

    Fightingirl...I don't know what my form of treatment will be yet. Tomorrow I have the lymph node surgery to remove and test, then I'll get my appt to see a RO. Hope you're doing well.

    Patti, Elem, and AB....thanks for your responses. I guess I'll have to wait and see where my RO is located in conjunction with my office and decide from there. I hate getting up really early if I don't have to.

    I hope you all have a great day!

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    Ruby - yes, I got my news over the phone as well. So shocked!

  • Ruby3813
    Ruby3813 Member Posts: 96
    edited February 2017

    i know, right?! It's like he was calling to tell me I had a sinus infection! Don't get me wrong. I really like my Dr. I guess BC is just so commonplace nowadays.

  • Westthebest
    Westthebest Member Posts: 31
    edited February 2017

    Hello ladies,

    I had raditaion for 6+ weeks a few years ago, and wanted to share what worked for me. I am fair skinned, some freckles, etc. My Naturopath suggested Aloe Vera gel. (bought large bottle at Whole Foods). She suggested starting asap, not waiting till you were in pain. I put it on after my morning shower, immediately after rad (took small ziplock with wash cloth and some aloe vera with me in dressing room), when I got home from work, and before bedtime...minimum of 4 times/day. Seemed to save me. Did mine early afternoon so I could still go to lunch with a friend if I wanted, and got important work done in morning. Had friends give me rides several times-past the time, I didn't feel as tired, and felt like I kept in my social loop-distractions:)

    best to you all!

  • Kathy21
    Kathy21 Member Posts: 19
    edited February 2017

    I feel like I am crashing the January surgery group, with my surgery being on 2/7 - but rads is my next step so I getting good information here listening to all of you have gone before me. My appointment with the radiologist is this week on Friday and reading all the different versions that are administered I can't imagine what options or non options I will have offered. I am doing mine through the University of Pennsylvania so I know a lot of clinical trials are available but not sure I would be up to that sort of thing. Learning a lot so I hope you don't mind me being a week later in surgery and joining in. I know one version they offer is a 10 treatment but don't know if I qualify as of yet. My first post op is on Thursday, the day before the radiologist appointment. My only issue is numbness and pain under my arm but not overly severe but worrisome since it is hard to distinguish normal from more complicated. I wish they saw you a week later so you had a little confidence you are healing correctly.

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    hi girls!

    west the best - thanks for the aloe vera tip. i will try that and aquaphor to keep skin moisturized. ro gave me calendula cream, but says it doesn't prevent anything, just helps discomfort and redness should that develop.

    kathy21 - i should change the name of this group to feb/march rads. my first zap is this wednesday and l go every other day, just 5 sessions, to end mar 3. fightingirl and pyrrh can give you loads of info on brachytherapy, which is when they leave a catheter in and you do twice daily sessions for 2 weeks - they even have a separate thread for that. and the jan rads group is really prolific with more women who have done the 6+ week course.

    like all of you, i sit in the waiting room and wonder why am i here? im not sick. but then in the room when they snuggle you down and make sure all your measurements and positions are identical, i realize boy, they sure do have a lot of info on me, i guess this is really happening. total denial. i wish they had something interesting projected on the ceiling. its hard for me to stay still and focused.

    keep us posted on how you all are doing. I've just had my 2 simulations so far, and my shoulders were sore from keeping arms above my head for so long, but sounds like the actual zapping sessions are shorter, so should be fine. but i can't imagine how anyone with rotator cuff or other shoulder problems does xrt - not comfy. but i guess, none of this treatment is exactly a trip to the spa...

    image

  • Mamasha
    Mamasha Member Posts: 104
    edited February 2017

    annoyingboob and other ladies starting this month,

    Fyi.....you can ask the techs to rearrange the way arm rests are positioned. I almost felt like I was on survivor during a challenge because keeping my arms overhead was so uncomfortable. I told tech and she said she can move them around to find a better position. I tried that and it works better but still not great.

    Guess I was breathing heavy or fast one day. Tech asked to try to breathe softer.....easy to say since she's not about to receive radiation.

    Hugs ladies!

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    I have to say I was pleasantly surprised about the radiation room. There is music and a large, very pretty stained glass fixture on the ceiling of flowers and meadows I look at when I am lying down. The music is not elevator music, but soft pop. I call it the zen room and it calms me. BUT, of course, I would rather have Reiki and/or massage offered! I'm in and out of the room in less than 10 minutes.

    annoyingboob (good name) - thanks for the Calendula pic. My RO recommended Cetaphil and I haven't seen that mentioned on any of the boards.

    My 5th rad today at 11:50 - will be thinking of all of you.


  • Ruby3813
    Ruby3813 Member Posts: 96
    edited February 2017

    Good morning ladies! Today is lymph node surgery for me, so if i could please get some prayers and positive thoughts, i sure would appreciate it. I think the dr is only going after one...two max.

    The stress of all of this has really hit my blood pressure. I'm normally a very calm and collected person, but my bp skyrockets around drs and nurses. Its fine at home, but goes crazy once I get that bp cuff on in the drs office. In fact I had my first biopsy cancelled because of that. My PCP gave me a script for xanax and I've taken one of those, so I'm keeping my fingers crossed for today.

    AB, that's the exact brand of calendula cream in my Amazon cart.

    Wishing you all a blessed day!

  • carolina_girl63
    carolina_girl63 Member Posts: 29
    edited February 2017

    I am still waiting on my Oncotype test to come back. Getting very anxious to get this all started and over with. I could use any advice that anyone may have. Very nervous about getting burns and the tired part!!

  • Pamela23
    Pamela23 Member Posts: 510
    edited February 2017

    Hi Ladies, hapy Monday!!

    I'm new to the group. I start rads tomorrow. I had lumpectomy in October, had a moderate Oncotype DX score which led to 4 rounds of chemo that ended a month ago (I cold capped so have 70% of my hair), and now onto radiation, first one tomorrow. I still need to read the tips but I'm mostly interested in the creams to prevent burns. So tired of experiencing the side effects that go along with every treatment. I'd like to minimize any w/ this treatment since I'm still having lingering stuff from chemo. Sounds like there may be lotions to prevent burns? I'd rather be proactive than reactive so any recommendations are helpful!

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    good luck ruby!!! Thinking of you for an easy surgery, negative nodes, and smooth recovery!

    Patti, I am definitely going to recommend to my ro that they improve the zen in the room. They play nice music, but I need something to look at!!

    I already use Cetaphil - yay! It's known for being gentle on sensitive skin. There is a cleanser and also lotion. I don't think there is anything to PREVENT xrt skin issues, but keeping the skin well moisturized seems to be important from what I've read. The January girls had some late complications with axilla splitting, so be extra attentive to your armpit!

    My heart rate soars when I get anxious about medical stuff but lucky bp doesn't get too crazy. When I went to see mo about tamoxifen my hr was 130! Normal for me is 60. I just hate that feeling bc you know once you get home or even in the car, you will start to settle down

    Pamela, good luck tomorrow! I'm right behind you on Wednesday. We can do this!!

  • Patti1746
    Patti1746 Member Posts: 49
    edited February 2017

    Carolina Girl - Hope the test comes back quickly. I was told I was not a candidate for Oncotype Test since my tumor was small and Chemotherapy was not being considered.

    Hope all went well Ruby. And good luck to Pamela and Annoyingboob. One thing that makes me feel a bit better - I'd rather be doing rads in February/March instead of July/August. It will be the first day of Spring when I'm done. Perfect timing.

    Yes, you can do it!

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    patti, I totally agree!! This winter has been quite rainy where I am, so perfect nesting weather for surgery and xrt recovery!!! I don't even need to make excuses not to go out - everyone is barricaded indoors trying to stay warm and dry!! I am getting a bit stir crazy though, so I'm excited for spring if it ever decides to arrive. And first time in my life I'll be able to wear a sundress with no bra!! I must say, the bad thing about staying inside is online shopping - too many temptations!!

    So let's get these treatments over and done with so we can all enjoy some nice weather in a few months! Hang in there, team, we can do this!!

  • Elem
    Elem Member Posts: 327
    edited February 2017

    hi Pamela23,

    Welcome. Wow your tumor was so small and because of your score u had to do chemo? I was never told I had a score ? I am doing rads . Have had 4 tx's

    so far ,and have had no skin effects , but they say it comes later . I was given a cream called vanicream . I have not yet applied any . I hope it is good and not just a generic hospital giveaway. I was given this by the my RO . Do they also recommend hormone therapy for you as well ? Cheers to keeping 70% of your hair and congrats on completing your chemo 👍💪🏻

  • Elem
    Elem Member Posts: 327
    edited February 2017

    hi,

    Regarding creams , I was given a cream called vanicream by my RO prior to starting the rads. I have only had 4 tx's so far . I will receive 20 total over 4 weeks . Pamela23 , Congrats on finishing chemo and keep 70% of your hair. That is awesome. Our DX are very similar , I never received an onco score. Will you be doing hormone therapy as well after rads? So far I have no skin issues, but I was told it is not something that happens in the beginning . So I have nit yet used the cream .image

  • Pamela23
    Pamela23 Member Posts: 510
    edited February 2017

    Patti--that's interesting that your dr said it was too small. You qualify to test if 1. it's stage I, II or III 2. ER+ 3. Her2- I only had calcifications and the lumpectomy reveled 3mm of cancerous tissue, so very small. My MO said to do radiation/hormone therapy but gave me the option. A score below 18 is desirable to avoid chemo, above 31 then definitely advised for chemo. Mine was 28 so I had 4 rounds. Size doesn;t matter, it was aggressive and caught early. Not to scare you, it's just knowledge is power and it's disappointing a dr makes assumptions. My MO and I were both surprised at the higher score for mine being so small. We were thinking it'd just confirm our course of action of just rads.

    Elem--I will be doing tamoxifen after rads but chemo put me in a menopause that may be permanent since 80% of women over 45 get permanent menopause, I'm 47. Time will tell but I'll give it a year before I'd want to change meds. Not happy about being on something for 10 years! The Vanicream is the same brand I wash my face with. A friend gave it to me. I still to switch my other face toiletries to paraben free ones.


  • Pamela23
    Pamela23 Member Posts: 510
    edited February 2017

    Just came across this article: https://thetruthaboutcancer.com/prevent-radiation-...

    Has some suggestions for more natural creams to prevent skin irritation

  • annoyingboob
    annoyingboob Member Posts: 558
    edited February 2017

    thanks for that, Pamela - sounds like a good regimen. The only thing is I thought I read somewhere that lavender oil had estrogenic properties, so I'd be careful of that one. But calendula and aloe Vera with coconut oil will definitely be part of my regimen!

    I emailed my dermatologist ages ago and he suggested an antioxidant with vit c and e, but I haven't seen anyone else recommend that, and the product he recommended is really expensive, so I'm going to hold off for now. Maybe when I'm all done I'll give it a go to help get rid of built up free radicals.

    The past few days I've been smothering my breast with aquaphor which is like Vaseline and very gooey. The calendula I have isn't the oil but a light cream, and I prefer that, but maybe I'll keep doing aquaphor at night bc it does seem to really keep the area moist. Good luck. My first zap is right after yours!!

    Elem good luck with your day 5!!

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