January 2018 RADS group

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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Scaligirl i count the zaps too, i believe mine are 18 or 19. My mind tends to wander a bit however then i lose my count lol. Oh boy that must have sucked having the machine break down while you are ready to get your treatment & then having to go back. I had that happen on my first rad, the machine i have been assigned too was down & they had to take me to another machine.

    MmeMarais hope all went well with your first treatment. One less till you are done all your cancer treatment. All shall go good you will see.

    Cindy & Amy sending good machine not breaking down vibes to you both & hope no more breakdowns so you can both not have to add another day to your end date.

  • Katiejane777
    Katiejane777 Member Posts: 109
    edited January 2018

    Hi Everyone,

    Aussie girl here. I am due to start rads 17/1/18. They want me to have 16 treatments and a boost at the end. They are still deciding on the boost length. I had a rough morning and cried during my planning appointment. I felt ridiculous afterwards lol. They were so lovely to me. My daughter is a newly minted RT so she has been helpful with information I forgot to ask at the planning appointment. I am keen to get this bit of treatment done as hubby has organised a trip for our 25th anniversary. It was a surprise but so was my BC so he ended up telling me. I hope everyone does well getting through rads. Big gentle hugs to you all.

  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Katiejane777 you are not alone. I cry at every consult (or in the car after). Even though I know my prognosis is good it is still so overwhelming and scary. And I'm frustrated that I have to deal with all this information. I've never even had surgery before, much less a life threatening disease. My daughter has been very helpful too. She goes to a lot of the consults with me and my husband. I call her my scribe. :) she takes copious notes. My son went to the surgical consult but he works crazy shifts so we just keep him up to date. Plus, he doesn't mind discussing the cancer but was uncomfortable seeing my boobs on the mammogram. LOL.

    Going for a bone density test today. They want a baseline to monitor bone loss once I start the meds. 1st rad tomorrow at 4pm. My RO doesn't do tattoos. I'm all marked up with stickers and a sharpie! Some have fallen off when I work out. The nurse said not to worry, they can remark me. They took pictures. :)

    This is the winter of my discontent..... but spring is coming.

    Sarah

    ps. and I think I have a yeast infection. geez, I didn't need this.....


  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Good news from my bone density test. Apparently my hips are strong. My back on the other hand is on the edge of osteoporsis. I need to bump up the calcium and keep exercising.

    That was definitely the easiest test so far and the tech was wonderful. So encouraging. she made my day.

    Happy Wednesday everyone!

  • PVM
    PVM Member Posts: 136
    edited January 2018

    Katiejane77 its normal to cry when you get dealt with a diagnosis such as BC. Its alot to go through but your in the right place where we all are going through similar & support each other. You will get through this just fine. For me Rads are so much easier than chemo & you shall kick butt in your rads treatment so stay strong & if you need to cry you let it out but then continue to stay strong. hugs :)

    smwusaf glad to hear all went well with your bone density test & its alot easier than all other tests. Good luck tomorrow with rads all will go good you will see. The first appointment is always a bit longer as they normally do scans before you start & have to set you up but then all will go fast. Its honestly not that bad & once you get used to your techs & so forth you will see time will go by fast. You will be fine.

    I had rads today & saw my RO, my skin is holding up good so far, its slightly pink but not that bad. Before i started rads my RO was a bit worried as im big chested i would have issues but he was pleased today & said my skin should hold out for my last 9 treatments. I am not having issues with tiredness or lack of appetite yet but that may change by next week who knows but the countdown has begun for me woot woot.....lol Have a great week ladies if you are doing rads or will start next week. Also as my RO told me today not to forget putting cream on my shoulder & back as the laser apparently hits there too. I have been using Glaxal Base & its worked for me, I just slather is all over the place now...lol


  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    My RO said it is not uncommon to not feel the effects of fatigue until after 4 weeks treatment takes place, even if you are finished. He said not to worry if that happens

    S

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Hi all. I just had my mapping done yesterday. Was supposed to be at 10, but the machine needed servicing, so they rescheduled until 1pm. That makes me a bit nervous on the first day. Got my 3 "tattoos" as well - a tiny bluish-black dot in between my breasts and one on each side as well. I asked if I could choose a color, and they just laughed and said that was the only one they had. My RO said I was healing well from my 12/1 surgery, and I do feel the ROM and pain/numbness has improved greatly. I will go back for a trial run next Thursday, then I start the actual 6+ weeks on 1/15. To say I will be done with all the major treatment by next month sounds wonderful!

    Wishing everyone no SEs, rest and patience to make it through. A lyric came to mind: "It's a new dawn, it's a day, it's a new life for me...and I'm feeling good." :)

  • Katiejane777
    Katiejane777 Member Posts: 109
    edited January 2018

    Thank you smwusaf and PSV that makes me feel a bit better. It is overwhelming even when you know your prognosis is good. Smwusaf I'm glad your bone density test went well. I had a bone density baseline too but I haven't got the results yet. Osteoporosis is rife in my family so I'm very nervous going on the hormone therapy. I'll be taking calcium and exercising too and hoping for the best.Lol. My Dad has pretty hard core heart disease so of course I'm worried about cholesterol too. I got a baseline for that as well lol. Soooooo many tests!

    I'm glad you girls reminded me to put cream in my back as well as my front. I totally would have forgotten. I hope everyone is still getting through rads ok. Big gentle hugs!!! #cancersuck

  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    My machine worked fine today! 5 down/11 to go; last day 1/18. I'm using aloe after treatment and Aquaphor after my shower & before bed.

    I meet with my MO 1/9; she's on vaca threu then. She read me my Oncotype score of 19 over the phone on 12/19. I'm trying to get the printed copy now; its not in the system at Onco practice. Spoke with Genomic Health, they'll fax it to me. Lots of decisions to make and I want it in my hand to help me.

    #cancersucks HUGS to all!

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Finished #18/30, 12 more to go, woot woot!

    Rain came in so I don’t think I can do my daily walk tomorrow ... bummer! Skin is still holding up good for now. Keep my fingers crossed!


  • Lewhy
    Lewhy Member Posts: 54
    edited January 2018

    Hi everybody, just finished #5 of 20. My skin still looks good, except for one spot at the top of my incision from lumpectomy in November. It has been red ever since the surgery, but everyone has looked at it and they said it's okay for now. I have not had any side effects except for a headache that starts every afternoon since Sunday.

    Glad to hear everyone's skin is holding up well! One more day than 2 days off!!

  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    15/30 done today. I am seeing more visible SE's including losing my underarm hair in the area where the rads hits. More sensitivity too. My RO gave me lidocaine cream and pads to place in between bra and breast. I took advil for first time today. Next week will prob be the worst of it, then I will be on to my boosts. Thinking of everyone going through this with me, you are all warriors. We are all in a club we didn't want to join but we are doing the stuff, just get up every day and make it happen strong ladies!

  • scaligirl
    scaligirl Member Posts: 74
    edited January 2018

    Okay you all, funny story for today. As I was leaving the hospital where I get my rads treatment, I see an old truck pull up to one of the handicap spots in front of the hospital doors. This truck has got to be circa 1975. It's maybe 50 feet from the doors. So as I am walking out I see this older gentleman in the truck moving his handicap placard to hang on his rearview mirror. No biggie. And then as I get maybe 10 feet away from his car I hear it... AC/DC "Back in Black" absolutely blasting inside his car. It was SOOO loud it just made me crack up! I smiled and gave a head nod at him as I passed him. I smiled huge all the way to my car. First, I love that song! Brings me back to high school. Second, you go man! Rock out in your car as loud as you can for as long as you can! I proceeded to blast "24 Magic" as I drove away. Made my day!

    On a side note, my machine only beeps the entire time it's going so there is nothing to count other than seconds. Oh well

  • Cindy929
    Cindy929 Member Posts: 4
    edited January 2018

    Hi all, so I started rads November 13, came on here to see if my fatigue was common at this point. I finished 30/30 on 12/28! But the fatigue was just getting worse and still feel exhausted. I am latin and thought my skin would hold up well, I did well until about the halfpoint mark. By treatment 20 I had blisters and peeling. Used aquaphor, cortisone because the skin began to itch and actually took the inside of the aloe plant blended it put it in the fridge and applied it 2-3 times to help. Eventually, my RO prescribed Silvadane. It did become very painful towards the end but has healed so quickly. Funny story the machine actually broke on my last treatment during my last 2 targeted chest areas. My RO decided it would be okay that I actually was within the protocol for number of treatments and 2 zaps wouldn't make a difference, sure was relieved because I was determined to ring that bell that day.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Cindy, I have some fatigue which a short nap helps already. How bad is your fatigue? I have chemo before, so I know fatigue will take time, took me weeks to get my energy back. I have 30treatments and I just finished 18,12 more to go. So far my skin held up fine, turned a little red no itch yet. I’m praying no blisters please.

    Scaligirl, the guy might have hearing problem Hahahaha

    Gigibee, we will keep each other company, cheering for each other.


  • Cindy929
    Cindy929 Member Posts: 4
    edited January 2018

    PauletteK, I can sleep for hours. The MO today said it's a combination of the two rounds of chemo (first round wasn't working, Mastectomy path showed cancer was actually HER2+ so went through second round to target the HER2 in combination with Herceptin and Perjeta). Still receiving the Herceptin, plus Rads all taking a toll. I just didn't think it would still be so bad. Will see how it is in a few weeks and continue to address with my RO at my follow up and my MO/SO during those visits as well. I just want my energy back.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Cindy I didn’t know you are still having chemo while you’re doing radiation, no wonder you are tired. I don’t know how you handle both of them at the same time! Hugs!


  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    The addition of lidocaine and the telfa pad has helped me tremendously. 16/30 done today. Missing my regular work outs. Walking treadmill when I have the energy (can’t be outside since it is polar arctic here) and did a bit of yoga /stretching today. Hope everyone’s having a great day and a smooth treatment .

  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Cindy, I am more fatigued now than I was during chemo! My skin is getting really bad. I hope when I see the RO again he gives me something stronger. I am not blistering yet but very itchy and skin is all peeling and irritated.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Gigibee, done my 19/30 today .. almost 2/3 done. Met with my RO I got little breaks on my nipple so I loaded up lotion then put telfa pad on so it won’t touch anything. Hope it will heal fast. Only six more whole breast, boosts according to him, it will target the tumors area so my poor nipple would be fine.

    Amy, my Skin hold up well, even my RO said I lotion my skin well. I’m trying to cut back my nap, today I think I only nap about 30 min. I didn’t take my walk this morning because it’s raining here. Beside fatigue I lost some of my appetite, but it is still much better than chemo, isn’t it? You are very close to the end, you will be fine. I ordered Miaderm with 4% lidocaine, my RO said that would be good one to use also.



  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    okay. 1/20 done. :)

    I am glad that I was able to get my appointments before 8am for the most part. That will make my life easier.


  • Cindy929
    Cindy929 Member Posts: 4
    edited January 2018

    Amy, I think the fatigue is because the Rads is every day no time to bounce back...you get the weekends but that's errand and family time for me especially during holidays. With the Herceptin it's every 3 weeks so I do get a break. As far as the skin burns, I hear ya. If they categorized them the way normal burns are mine would probably be 2nd degree. It heals quickly with the aloe/aquaphor/silvadene treatments. Try hydocortisone for the itiching. They will only give you the silvadene if you are actually peeling with open skin, but it helps tremendously. Good luck!

  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    #7 of 16 done today. Nothing showing up on my skin yet, but at gym workout I feel the tightness inside.

    Glad for the no rads weekend, frigid cold & wind who cares...I won't have to go out in it! Hugs to everyone, stay warm, and slather on lotion.

  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Cindy929, I see the RO on Monday and hoping for something else. The skin under the peeling is like you said, a 2nd degree burn. It is not blistered or oozing yet but I can see that coming next. I do put on cortizone and then aquaphor which is so messy. They did give me the tefla pads. Today I bought a few more really soft camis but I really wish I could just walk around with nothing touching the breast. That is when it feels the best. Best of luck all. I have five more left.

  • PVM
    PVM Member Posts: 136
    edited January 2018

    Hi ladies I'm done no #14 have 7 left (2 reg & the last 5 boost). So far my skin is holding up okay so far i am getting a bit tender on my nipple it's a bit pink & my under arm is getting darker. I am not experiencing fatigue or loss of appetite mind you im thinking the loss of appetite wouldn't be so bad maybe I could lose a few Christmas pounds lol On a positive which is the only positive I now have no under arm hair lol. Amy & Paulette I hope your skin does not get any worse, hugs. Cindy hope your tightness gets better by the weekend, i was told not to do heavy exercising during rads just minimal so i try to do walking & my stretches once I'm done rads & get the all clear will go back to the pool.

    Ladies wishing you a great healing weekend & may you skin heal for next week rads. Keeping fingers crossed we don't get any bad SE next week.

  • Sahmeranah
    Sahmeranah Member Posts: 22
    edited January 2018

    Hi all! I started RT December 20 and I have 9 more sessions to go (but who's counting?) -- I'd like to join this group as well as the December group. :) While I HATE RT I hate cancer more (F you, DCIS). So far, I look like I have a sunburn (I'm a fairly pale, Euro-mutt): no blisters or weeping skin. My moisturizing products have been calendula creme (after the first 6 RT treatments), vitamin e oil, and pure shea butter. I discontinued the calendula creme because there was a little rosemary oil added to it which I think it was irritating already supremely irritable skin. The shea butter and vitamin e oil both seem to be doing the trick. My BFF, a dermatologist to the stars, recommends Biafine for RT dermatitis for what it's worth.

  • Sahmeranah
    Sahmeranah Member Posts: 22
    edited January 2018

    smwusaf, I feel you! The appearance of my breast makes me really sad too. The breast is shrinking and the incision is becoming increasingly buckled, dimpled, and deep with the passage of each day of RT.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Finished 20/30,hanging in there. Skin turned red but it is manageable so far. As far as the worse is I have a crack on my nipple and hope it will not turn worse. Hopefully the two days rest help me out.

    Welcome Sahmeranah, Biafine cream is prescription cream. Vitamins E oil sounds good to me, I might give it a try this weekend.


  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018


    I am so upset and trying to keep it together. As you know, I was supposed to start RADS on 1/3 and do this with you gals. Well, my "just to be on the safe side" MRI yesterday that my new RO ordered did not have good results. They found more sites that are concerning, now in BOTH breasts, and a 23mm lesion in a different area in my right breast (same side as LX). How could the U/S I had prior to my surgery way back in October MISS a 23mm lesion?!?!? On the left, the area of concern is only 6mm but will also need to be BX but that will have to be done using MRI. I am scheduled for another BX on the larger right lesion if they can find it on U/S next Tues. If they can't find it, then both sides will have to be BX using MRI which sounds a little complicated to me. So...no radiation yet in case I need more surgery, which really concerns me because I am already 7 weeks post-LX now! I thought I had a plan, then last week the plan changed, and now the plan is totally out the window and I may have BC in both breasts. Ok, breathe... maybe the BX will be negative; after all, MRI is very sensitive but also not very specific. I'm supposed to be where you gals are and I'm not and I'm REALLY disappointed. I will try not to whine too much more, but this stuff is really expensive and the thought of basically starting over and paying for biopsies and surgery again is a budget killer too. More time off work, using up PTO so no vacation this year, ugh! I need to get my head in a better place!

    I will continue to cheer you all on and rejoice with you as you near the middle and end of your RADS. I just wanted to be one of you. But I am so very proud of you all.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Well, that is wretched and disappointing. So sorry! If it helps at all I had an MRI-guided biopsy that wasn't any more stressful/painful than the US-guided biopsy. And MRI does throw out a lot of false positives. So I'm going to continue to be optimistic for you.

    So yes, BREATHE. You have been an inspiration to all of us and I have fingers crossed everything will be fine.

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