June 2017 Starting Rads

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  • dcdrogers
    dcdrogers Member Posts: 115
    edited June 2017

    @Hangin, I am receiving 25 rad treatments. I asked my RO about boosts and he informed me that since there was no residual cancer in the breast tissue that was removed I wouldn't need the boosts. For some reason I assumed I'd be getting 35 treatments because of my lymph node involvement prior to chemo, so I was pretty content with hearing that I'd only be getting 25.

    P.S. I believe boosts are when you get a double-dose of rads treatment to the area where the cancer originated?

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  • FigNewton
    FigNewton Member Posts: 2
    edited June 2017

    I am Newbie to this site. Hello!

    I too am anxious. Mapping set for June 21st with simulation run set for following week. Told to expect 33 sessions.

    Not how we expected to spend summer is it?!?

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited June 2017

    FigNewton - you'll be fine. The hardest thing about mapping is holding your arms above your head for an extended period of time. My right arm actually fell asleep and the therapists had to help me bring it down. I started my treatments on May 22 and will have 33 - 28 regular and five boosts - so I'll finish in July. Each of my treatments lasts about 15 minutes, including getting changed into a gown. I'm a little red and have some soreness now; also am very fatigued. But we'll all get through this!

    Best of luck to you and welcome - none of us asked to be here but we're all in this together.

    MJ

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  • BG46TN
    BG46TN Member Posts: 286
    edited June 2017

    I had my catscan last week, and I have my simulation on Thursday June 15th...so I should be starting on Friday the 16th...I have to do 28 sessions and I have an hour drive each way UGH! not looking forward to it, but I'm a teacher so except for the last week of school, at least I will be on summer vacation for most of it. I did get permission from my principal to go to rads first thing in the morning and then come to work (next week) since I am in a HS they are just taking exams...lets hope they have the earliest appointment open for me though,other wise I have to go after work and will hit tons of traffic...

    I just keep telling myself I"m in the home stretch. I made it through chemo and a double mastectomy, I can get through this next step no problem..right? :-) LOL Then I will be starting Xeloda for 4 months, then my implant exchange surgery...then my ovaries out...ugh its never ending...

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    I had my simulation and first tx session yesterday. Took longer then I expected. I had spasms in my neck and L arm. But it is done. During the CT scan and mapping last week they put stickers on the marks and they stayed on no problem. With the simulation they put on new stickers and most came off and it looks like some of the marks are gone. Is this a problem? Not sure what all the new marks are for and I hope they do not have to do it again. The holding the breath tech was not a problem and I feel fine. So far so good. I love marking off each on the calendar!

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  • minatabo
    minatabo Member Posts: 28
    edited June 2017

    Hello all,

    I'll be starting rads end of June so joining the discussion to get insights/tips from you all :)

    I will be having 25 sessions with no boosts since I had no residual of disease after double mastectomy. Lymph nodes negative. So the plan is only chest wall (no axilla).

    But a question for those who have LVI (lymphovasular invasion) - my rad doc said its up to me to decide if I want to include rads to the supraclavicular region. (It comes with risk...but low she said for esophageal cancer, lymphedema, and damage to brachial plexus nerve). The research articles I've read said this area is usually done for those who had cancer in lymph nodes -but there aren't much information on those with LVI. (I've already completed 4 cycles of TC chemo)

    Anyone have similar experience/diagnosis, and what did you doctor suggest?

    Many thanks,
    Mina

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    Had my second session today. Took a total of 20 minutes, including getting undressed, the treatment, putting on prescription gel and getting dressed. I know tomorrow will be longer because Wednesdays are when I see the RO.

    As far as I know, I will have only 25 sessions, since no scar tissue is in the way. Originally we thought it might take 30 - 35.


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  • Labtech47
    Labtech47 Member Posts: 16
    edited June 2017

    SummerRain I am only 2 hours west of you getting my treatments.

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  • Luwusu
    Luwusu Member Posts: 88
    edited June 2017

    just had my first radiation. It was okay. No discomfort. The weird thing is that I had tears right before it actually vegan. The techs asked if I was scared. Nope. Did I think ut would hurt? Nope. Later I figured out that it was because I feel like I'm on an obstacle course. Got done with chemo (oct-feb), got done with surgery, dealt with many side effects, and there I was ready to begin radiation. When I get done with radiation, I'll be on Herceptin until February, and anti-estrogen meds for a minimum of five years. There will be end to this.

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  • SiameseX2
    SiameseX2 Member Posts: 30
    edited June 2017

    Hello All,

    I started radiation on June 6. They planned for a total of 36 sessions, 25 regular ones and 11 boosts.

    With 8 treatments behind me, my skin is not so bad so far. I can see redness after I shower or exercise. I only wear antiperspirant some days at work or if the gym is hot. I wear wireless bras when I'm out, and change to a comfy cotton shelf bra when I get home.

    Mostly just fighting the fatigue and trying to take naps whenever possible. Good luck with all your treatments!

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Luwusu- I did the same thing during my simulation. One I was having neck spasms with keeping my head turned to the right and l arm up but I was surprised that tears kind of just leaked out. Just completed number 4 and feeling fine. You have had a lot to go through and sometimes I think it just needs a little release! Keep up the good work. Rooting for you!

    siameseX2- I have only had 4 and I have one little tender spot but not bad at all. I am using a green tea concentrate 4 times daily and calendum lotion 2 times. I come home and off comes the bra. I got rid of all my underwire bras. Glad you are feeling ok and are able to take a little cat nap here and there. Take care.

    Rosemary

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    Finished day 4. Also had PT. I am exceptionally stiff and achy on the surgery/radiation side. Developing some cording, as well. Therapist says this is very common with radiation. Feels like I'm losing ground. Going to keep going to PT twice a week.

    Bought a couple of tops which are light weight and not too revealing since the RO says avoid bras.

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Summerrain- I also had some cording and some scar tissue and my breast would swell and become very sore. I went to a Certified lymph OT and she worked on it before radiation. The last 3 sessions she used vibration device that really worked. She said now that I am in radiation it may build back up (so far so good) and we will treat it after radiation. I am glad you found a therapist and hope you get some relief. Keep moving the best you can. Take care and keep us posted.

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  • Luwusu
    Luwusu Member Posts: 88
    edited June 2017

    so, 4 down, and 29 to go. the first 4 were easy. I have a tiny bit of pink on Lefty, but no pain or burn. It's nice to have Saturday and Sunday off. I'm using Aquafor plus two others. Hope everyone's week went okay.


    We are driving to Hampton Beach tomorrow to see the sand sculptures. Anyone else have fun plans for the weekend?


    Nancie
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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Luwusu- glad you are doing well. Love marking the days off my calendar. Planning a father's day picnic at a state park in brown county Indiana. Hope for good weather. And you are correct, it is great having the weekend off!

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  • lifeb4me
    lifeb4me Member Posts: 39
    edited June 2017

    I'm also in the June club. Today had 2/33 (25 plus 6 boosts). My cording that had resolved is back will have to go back to OT,

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  • ML1209
    ML1209 Member Posts: 241
    edited June 2017

    Hi ladies - I am meeting with the RO tomorrow to get this started. Would love to hear what is working for you as far as bras, deodarants, etc. and any helpful advice you have to offer. Thank you so much in advance.

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    Bought several of these at Walmart. They are semi supportive without putting pressure anywhere. I can wear them under other shirts and not look totally be-all. Since I am fairly well endowed, that makes a difference to me

    At my store they had them in Junior and Women's sizes, but not Misses. $1.68 each. image

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    ML1209 - I would ask your RO about deodorant. The skin specialist at my RO office said to go without if at all possible. Also, nothing but the prescription moisturizer on the skin, for now. Many over-the-counter moisturizers have ingredients which are not helpful in this situation.

    Every day I get new blue dots. Every day I need to wash them off. The things one normally does to remove the dots (alcohol wipes or scrubbing) are completely opposite of good radiation skin care. So, I lay a wet wash cloth on the area for several minutes, then I wash with Dial soap and fingers only. Gets most of it off.

    I have been told "no bra".

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  • Rwrighty
    Rwrighty Member Posts: 38
    edited June 2017

    Funny story- I had to see a dermatologist yesterday. It was our first meeting. When I told him not to mind all the black sharpie marks, that I was having radiation, I made a light comment saying " I wish they could find a prettier way to mark me up like flowers or butterflies" He said "why, who cares? who sees it?" I said " well I see it and he rolled his eyes. I wanted to say "Let's take out a black sharpie and mark some big X's on your privates and see if you love it. But my filter in my frontal lobe was working today and I just smiled. I have to be checked every 6 months so yes I will be finding a new dermatologist. :)

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  • vixxyn
    vixxyn Member Posts: 45
    edited June 2017

    Hi all, I'm new here. Just had my surgery today and will be undergoing radiation but I don't have a start date yet. I'll be seeing my surgeon next week for a follow-up, and the oncologist after that. I was very lucky that my routine annual mammogram in April caught this in the very early stages; it didn't show up last year. Surgeon sent tumor and lymph node(s) - don't know how many he had to remove - off to pathology, I'll get the results at my visit next week. He doesn't think it's likely that the cancer has spread but wants to be sure. If it has I may be looking at chemo but right now only radiation is for sure. What a roller coaster ride this has been!

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  • blooming
    blooming Member Posts: 68
    edited June 2017

    Hi Folks,

    I'm a newbie to radiation. Still healing from surgeries (most recent was 5/19) but hope to be able to have mapping next week and to start rads in mid-July. What's the protocol? Do folks start a group for each month? Should I check for info in the forums for May and June? I'm learning by reading what to expect and what helped others. Sending good wishes to all; whatever your status in this journey.

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  • deemendoza
    deemendoza Member Posts: 84
    edited June 2017

    Hi Ladies,

    A little late in the game here. quick history I was dx in 2008/2009 DCIS insitu and IDC stage 1 I had a left side mastectomy no chemo no rads just tamoxifen for 5 years ( boy do I wish I would have listen to my onc treatment plan then) fast fwd Sept 2016 found a lump in my left side axilla while showering end of Sept dx with recurrence. I started chemo Oct 20 for a total of 8 rounds 4 of a/c and 4 of taxol. my surgery was delayed because chemo messed up my thyroids ( I say this because I never had thyroid issues until trying to get cleared for surgery) I FINALLy had surgery on May 9th they removed the previous implant (no cancer) skin (no cancer) a complete dissection of lymph node 35 of 38 tested positive for adenocarcinoma. Started radiation on June 14 for a total of 28 rounds. yesterday while applying the lotion they gave me in the changing room. I notice a small lump above my collar bone which was quick to move around. Of course I haven't eaten or slept thinking GOSH is this is again? I meet with my RO today and this will be the topic of our conversation today just wondering if anyone has experience this? my clavicle is also being radiated.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited June 2017

    Hi there, blooming! Haven't talked to you in a while. I had been reading the other radiation threads, which I found helpful, and so decided to start the May one (which is when I started). I'd say, sure, read the May and June threads and start a July one. Through the May thread I've met two women I'm friends with now through PMs. It's tremendously helpful to talk to women going through the process at the same time - and amazing how different the protocol is regionally!

    BTW - I've had 22 of my 33 treatments. Other than fatigue, some pinkness and a little soreness, I'm doing great. This daily routine is a bit of a grind but it's for a defined amount of time.

    Best of luck to you as you begin this part of this unasked-for adventure!

    MJ

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  • Luwusu
    Luwusu Member Posts: 88
    edited June 2017

    I had 7/33 yesterday. Last night I woke up at1:30 and couldn't get back to sleep so I went on to a different radiation thread here and read some horror stories. I do not recommend doing that in the middle of the night.

    But so far, everything is okay. My skin has been beyond sensitive through chemo and surgery so I'm just waiting for this shoe to drop. On the other hand, I know I just need to take one day at a time and be pleased that radiation went okay on that day and not worry about something that hasnt happened.

    I ordered pure aloe Vera from Amazon (everything I saw in local stores had other stuff in it) and I have been using it as s precautionary thing for the past two days, along with aquafor.

    Nancie

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited June 2017

    You've given yourself great advice, Nancie! I'm grateful for the titles of some of the threads so I know to stay away from them. I'm not sticking my head in the sand but I've chosen to stay away from negativity.

    I also ordered pure aloe vera from Amazon and have been using it every day (I've done 22/33). I'm now pinking up and my SNB scar is irritated but nothing I can't handle so far. I had read about the fatigue and I will say that's my biggest complaint. So I don't do as much in a day as I'm used to doing - it's for a finite period of time!

    Best of luck to you as you continue through this unasked-for adventure!

    MJ

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    Woohoo! 9 out of 24/25 done. One of the "treats" I look forward to is PT.

    Stretching during radiation: 3 positions my PT has assigned me.

    Supported camel - https://goo.gl/images/Vnwy3o

    Thread the needle - https://goo.gl/images/e2vwWA

    Locust pose - https://goo.gl/images/20zrl2

    Between each of these is Child's pose (wide leg variation) - https://goo.gl/images/WFPs2J

    We are doing these to help combat the stiffness that radiation causes, especially in the surgical areas.

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  • SummerRain
    SummerRain Member Posts: 54
    edited June 2017

    And a bit of humor... There is music playing in the procedure room, 70s and early 80s. Today the song "Good Times" by Chic was playing. Wrong place, wrong song.

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  • dcdrogers
    dcdrogers Member Posts: 115
    edited June 2017

    Today was 7 out of 25 treatments down. So far so good. Although, I feel like taking the daily Mon - Fri trek is like having another job.

    After treatment each Tuesday I meet with the RO so that he can check the skin etc.

    I've been using Miaderm and Aquafor twice per day. Once immediate after treatment and once after PM shower. So far no issues. Every once in a while I'll feel some slight pinching sensation in my lymph area, but it's not real painful. More of an annoyance. Implant is holding up well, but I still have quite a few treatments to go.

    July 18th can't come soon enough.

    ~Dee

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  • ML1209
    ML1209 Member Posts: 241
    edited June 2017

    SummerRain - thank you. They said they will give me deodarant and cream to use.... not sure what kind it is. Suggested soft cotton bras.

    Blooming- I have mapping next week as well, then start rads 5 to 7 days later.

    My RO told me that this will not be that bad since I have made it through chemo - praying that is true. Thank you all!

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