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Starting Radiation April 2017

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vlh
vlh Member Posts: 773

I don't see a topic set up for those beginning radiation in April so here ya go! My plan is for 15 daily treatments, prone position. My primary challenge will be a badly encapsulated shoulder that severely limits my range of motion before the pain becomes excruciating. I have my mapping / tattoos tomorrow.

Chime in, ladies (and, if course, gentlemen, too)!

Lyn

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Comments

  • BCinGA
    BCinGA Member Posts: 4
    edited March 2017
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    On April 4th, I start a 33 treatments, with the last week being boosted. I had my mapping and alignment marks (sharpie under some clear tape) today. Good luck everyone!

  • bravepoint
    bravepoint Member Posts: 232
    edited March 2017
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    I have my set up/tattoo appointment this afternoon. I'll be getting 29 treatments beginning April 18th.

  • vlh
    vlh Member Posts: 773
    edited March 2017
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    BCinGA, the RO mentioned tape, but I am allergic to adhesives so I'll be having tattoos instead.

    KB870, I hope all goes smoothly with locating the tumor cavity. I totally understand wanting to get 'er done.

    I don't have my treatment start date yet, BravePoint, but we'll be mapping partners today. ;-)

    Wishing everyone minimal side effects as we zap the cursed cancer cooties!

    Lyn

  • Ruby3813
    Ruby3813 Member Posts: 27
    edited March 2017
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    I started on 3/27, but since I'm having 20 total treatments, I'll be in the April group too. Good luck, everyone! :-)

  • WenchLori
    WenchLori Member Posts: 1,027
    edited March 2017
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    Lyn, thank you! I'm looking forward to the future!

    Lyn and Bravepoint, praying your mapping dates go well! Please let us know how the tattoos go! Inquiring minds want to know 😊

    Kb870, praying all goes well with locating the tumor cavity! We're all with you on getting things going. The sooner you begin the sooner you'll be done!

    Ruby, it's good to see you! Praying your SEs remain mild and you don't have to deal with any at all! My redness started after the second week, peeling at third week. We are all different I'm looking forward to my skin returning to normal ASAP!

  • bravepoint
    bravepoint Member Posts: 232
    edited March 2017
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    Lori - These were my first and will definitely be my last tattoos! I got 5 of them and they did hurt for a few seconds. I guess since they were all on bony parts of me i.e ribs. My skin is more sensitive than usual post chemo so even the alcohol swabs applied pre tattoo made my skin red. Hope that doesn't mean I'm going to react badly to rads....

  • Bdagal
    Bdagal Member Posts: 29
    edited April 2017
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    hi ladies - I'll be starting in April, too. My first appt is on April 5.....won't find out till then how many treatments I'll be getting. Have to be away from home for the duration of this, which I'm not really excited about.

    I'm sure I'll be checking in on here pretty often once I start.

    Hope it goes as well as it can for each of you

  • celiac
    celiac Member Posts: 1,260
    edited April 2017
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    About the "marks" - Mine were done with a Sharpie like pen and then round tape shapes over. Started out with 6 & received 4 more for boosts. Looked like a bad treasure map! When it was ok to remove marks, used Target's Up & Up oil free makeup remover (Neutrogena and Lancome BiFacil are similar), saturated a cotton pad with it and laid that on top of the tape shapes to "soak" through the stickiness. Then used cotton swaps soaked in makeup remover to continue to remove. This was the gentlest way I found to remove the marks. want to use anything

    So, one good thing about the tattoos - no marks to remove!

    Hope that you receive recommendations from your RO or Rad Nurse re: creams and such to care for your skin during rads. You can do this! Although rads were completed on 3/21, will be checking in here to see how some of the fellow March 2017 starters are doing in April and to offer/share info.


  • Bdagal
    Bdagal Member Posts: 29
    edited April 2017
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    hi bravepoint - just wondering why is there such a delay between your mapping and your start date? Is that by choice?

  • nayda985
    nayda985 Member Posts: 270
    edited April 2017
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    Hi Lyn:) and everyone!

    Today I did my CT scan and tattoo marking or mapping whatever it's called.. Lol.... I don't have a start date yet..but will be in April.. I have to do 30 treatments...not happy about going through this process but gotta do it😵

    Good luck ladies!

  • WenchLori
    WenchLori Member Posts: 1,027
    edited April 2017
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    Bravepoint, OUCH! My PS asked if I wanted to do nipple tats? Absolutely NOT! I'm keeping my fingers crossed that your skin will stay strong and healthy throughout your treatments. Pay close attention to how your RO wants you to do skin care, their all different.

    Bdagal, welcome! Why do you have to be away from home? No radiation clinics close by? How far away from home will you be? ☹️

    Nayda, welcome! It's not fun going through radiation treatments. It seemed to pass faster than I thought it would but then again it may just seem as it passed fast as I'm through it? You can do this! We're all here to give support and help you get through this!

    Celia, I'm with you in the April group! There's just so many different ways of getting radiation treatments andI'm always wanting to learn more and lend my support to everyone. I also had the sharpie pen with the round tape over top. I got to wash mine off today! I'm no longer a marked woman!

  • bravepoint
    bravepoint Member Posts: 232
    edited April 2017
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    Bdagal - I just went thru 6 months of chemo ending 3/17. My body needs some time to recover from that before starting rads hence the month break.

  • Bdagal
    Bdagal Member Posts: 29
    edited April 2017
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    hi Wenchlori - I live in Bermuda and we don't have a radiation facility yet. They're building one but it won't be ready till mid summer. So I'll be doing my rads in Boston at Dana Farber. Timing of flights isn't really conducive to being home on weekends, so I'll be there for the duration.

    I'm reading all of these comments about the time periods between first appointments; tattoos; and actual first treatment and getting a bit stressed. Have it in my head that first appt is next Wed, and hoping tattoo/first treatment within next day or so after that! Is that not likely? Every delay obviously means a longer time from home, hence my concern. I'll already be 10 weeks post-surgery when i get there.

    Bravepoint- that makes total sense!! I didn't realize you had just finished chemo.

  • WenchLori
    WenchLori Member Posts: 1,027
    edited April 2017
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    Happy April Fools Day everyone!

    Bravepoint, I also had a month off between 6 months of chemo and start of radiation. I spent the month recovering from chemo with my children and grandchildren in Texas. We had a wonderful time and it gave them assurance that I was doing alright.

    Bdgal, I can only imagine the costs of flying home on the weekends. It would stress you out more and the fatigue would be unbearable. The time between your first appointment, tattoos/markers and the first radiation treatment is different for everyone. I had my first appointment with my RO on 2/6 and my first actual treatment was on 2/20. I'm hoping in your situation they will get started at once. You need to be back with your family ASAP. We are all here to lend support and share our experiences but they are your #1 support group!


  • celiac
    celiac Member Posts: 1,260
    edited April 2017
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    Bdgal - Hoping since you are traveling from Bermuda perhaps Dana Farber can accelerate the timing between setup and 1st rad. My experience: Setup 2/6/17, where a "molded form" was made for positioning, marked with Sharpie for alignment, briefly met RO again & her dosimetrist, who work together to plan the angles, etc. involved in treatment. Dry run 2/21/17 & 1st treatment 2/22/17. Will anyone be with you during treatment? Has the RO given you an idea of # treatments, creams to use etc? Believe there are others on the bc.org discussion topics receiving treatment at Dana Farber, so perhaps you may find a useful contact. Please fire away with your questions - we are all happy to help a fellow sister on the BC journey. Must be lovely to live in Bermuda - just hope the snowy season has left for good before you start treatments.

  • Giginb
    Giginb Member Posts: 6
    edited April 2017
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    Hi everyone,

    I will be joining you all with April rads. I had my mapping last week, go again on Wednesday, where we are doing a follow up (?) and scheduling. Hopefully I will start the week after. I am having 33 treatments. I honestly think this whole process has not set in yet and I have already has chemo and surgery. Maybe it's my body/minds defense mechanism. I'm happy to have you all here with me so we can hold each others hands if needed. Thanks!

  • WenchLori
    WenchLori Member Posts: 1,027
    edited April 2017
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    Giginb, hi and welcome! I'm the same as youI keep waiting for things to set in but it just doesn't happen. I've had my DBMX/TEs, 6 months of chemo and 28 radiation treatments and I still haven't let any of it get me down. Maybe it just won't happen for us? I'm very tired of this whole process but I just keep going and going and going.

  • Unknown
    edited April 2017
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    I had my lumpectomy on March 3 and go in for the MRI and mapping tomorrow. I'm scheduled to have 16 radiation treatments. I think my treatments will start the week of April 9, but I'll find out for sure tomorrow.

  • siciliana
    siciliana Member Posts: 61
    edited April 2017
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    I'm joining you all with my first of thirty treatments starting on Tuesday. Driving an hour and a half each way. But Ithink I can endure (just about) anything for six weeks! Good luck to everyone.

  • Chicka1806
    Chicka1806 Member Posts: 2
    edited April 2017
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    I am starting April 3. I have 32 treatments. I had DIEP flap + double mastectomy done Jan 31st. I was wondering if anyone knows how long it takes to heal from radiation. I still have my second surgery to do but have to wait until I am healed from radiation. PS said it's normally 3-6 months but could be up to a year! I don't want to wait that long. Ready to get this shit over with.

  • moderators
    moderators Posts: 8,287
    edited April 2017
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    Welcome, Chicka! We're sorry that you are here, but at the same time we're glad you've found this wonderful group of people!

    If you need any assistance, please don't hesitate to reach out to us!

    Best,

    The Mods

  • WenchLori
    WenchLori Member Posts: 1,027
    edited April 2017
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    Chicka, a big welcome! I wish you didn't have to be here but you couldn't be in better hands. My PS also told me it could be 6 mos to a year for my skin to heal enough for my TE exchange. I've had my TEs for 9 months now and I'm ready to get to the squishy side of life 😊

    Nip_Van_Wrinkle, I love your username! Good luck with your MRI and mapping tomorrow. Will you be doing the breath hold during your radiation or is that an answer you'll get at your appointment tomorrow? I could have easily fallen asleep during radiation except for having to hold my breath to push my heart down and out of the way 😊

    Siciliana, WOW! A 3 hour round trip drive? Are you able to have someone go with you? If I had to drive longer than the 30 minutes I did I would have had to havesomeone drive me. 😊

    Hugs to All 🤗

  • siciliana
    siciliana Member Posts: 61
    edited April 2017
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    Lori, I will have someone go with me on occasion. I will see how it goes, if it gets to be too much, as I suspect it may be toward the end, I will probably stay with a friend or hotel. But the thought of living away from home for six weeks is worse than driving in my opinion. My appointment time is mid morning, so I'll be back home again by mid afternoon. So I can get out and sit in my garden and rejuvenate mentally as well as physically.

  • Norcalteach
    Norcalteach Member Posts: 5
    edited April 2017
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    Hi All!

    I started radiation March 30th! I'm all marked up with sharpie and tape:/ I'm going in twice a day (morning and afternoon) for a total of 44 rounds. I love my team, but I can't help but get a little emotional every time I'm laying there- I start thinking of all the women before me that I know that have had to lie there too.

    This too shall pass-

    Xo

  • Cartab
    Cartab Member Posts: 3
    edited April 2017
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    My heart goes out to you all who are just getting started. My last radiation treatment, #15, is tomorrow!! I am doing fairly well. I have had some spells of complete exhaustion but not too many. My skin is holding up, a light rash and some itching so far...using my cream at least 4 times a day. I've been an emotional wreck a few days but overall staying very positive. My treatments have been prone and the last few have been really painful on my ribs, between my breasts. Thankfully each treatment is very short and almost over. The ride to the center has been really stressful for me, 1 1/2 hours each way but the beautiful, brave people I've met there have touched my heart in such a profound way. God bless each of you as you go through your treatments. I'll pray for you and for a cure for this dreadful disease.

  • Bdagal
    Bdagal Member Posts: 29
    edited April 2017
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    Hi ladies - what is the reasoning behind the vast range of treatment protocols that ladies receive? I've seen on this thread both the shortest number of sessions (15) and the longest (44).....just curious as to how they determine this.....?

    CeliaC - my cousin will be with me till the 13th and then I'll be on my own. Don't know till Wed how many treatments I'll be having and when I start.

  • bravepoint
    bravepoint Member Posts: 232
    edited April 2017
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    Bdagal - I'm getting 25 treatments to my whole breast and under arm where lymph nodes were removed then a boost of 4 to where the tumor was removed.

  • Unknown
    edited April 2017
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    My radiation oncologist told me that they typically do either 16 or 25 treatments for a lumpectomy at the hospital where I'm having this done. However, she said there is not much data for how many treatments should be given for Paget's Disease, especially when there's no underlying tumor and when the cancer was confined to the milk ducts, which was MY case. So, she said she felt that 16 treatments was sufficient and that it would be at a higher dose (I think that's what she said). I went in for my markings today and will start treatments on Thursday. My guess is that the number of treatments takes into account whether or not there was an underlying tumor, perhaps the size of the tumor, whether there are lymph nodes involved, and some other factors I'm not familiar with. I would think it's on a case-by-case basis so that everybody isn't going to have the exact same number of treatments.

    My first radiation treatment is this coming Thursday.

  • bravepoint
    bravepoint Member Posts: 232
    edited April 2017
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    KB870 - Sorry about the pain you're experiencing but you'll be done before you know it!!

  • celiac
    celiac Member Posts: 1,260
    edited April 2017
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    Hello to all. Agree with others, about not understanding exactly how they calc the # rads, for those having "standard" type radiation, Believe what Nip said is part of the equation. Consulted 2 ROs and both prescribed 16 whole breast (4,256 cG total) and 4 boosts (1,000 cG total) to tumor bed for a total of 5,256 cG. Some people also have more radiation "fields" than others as they try to aim the "beam" to avoid damage to healthy tissue & organs. Like Lori, mine were to left breast, so a lot of breath holding, which was practiced at the setup. Breath holds for boosts were slightly longer than those for whole breast.

    My heart goes out to those who have long travels for treatment. For those with a long commute, encourage using any recommended creams at your treatment center before starting your commute. Hope that everyone has a good team on their side and that you are receiving all the info and skin care recommendations you need. That being said, please, please do not hesitate to ask questions here - us Feb/March rad gals have been through it and you will make it through this, too! HUGS!