Starting Radiation in May 2017

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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    GetBusyLiving - Never had flaky skin, but was prescribed Mometasone Furoate 1% from the very start to battle irritation. It's a bit thicker than Miaderm & slightly greasy, so could stain. Had a rash resembling "heat rash" after rads were done - worked well for that. Asked about using Miaderm-L, but RO gave me a scrip for Lidocaine gel & used that instead - very soothing, especially to nipple & SNB scar area. Keep using your Miaderm - I used 4x a day & it worked for me. About the boosts - since they are concentrated to the tumor bed, they do give the rest of your radiated area a break. Hope some of this helps. You can do this!

    Gentle hugs and healing thoughts to all in need.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited May 2017

    I'm getting more irritated with the fact that my RO said NO lotions or ointments to the area "unless directed by your physician." The nurse claimed I wouldn't need any....but I'm like "are you kidding me?" I haven't heard from ANYONE that didn't have some sort of discomfort and needed something for it. I have a meeting with her next Tuesday and I'm going to ask her about aloe vera gel. I also read that Calendula Extract is good. In fact, this website had a whole regimen of several things to use....what do you think?

    https://thetruthaboutcancer.com/prevent-radiation-burn/

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  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    Nancy618, that is exactly what I was told. Now they did say I could use the clear aloe vera but said it wouldn't do any good until I had an issue. I have had 19 of 31 treatments so far and have had NO SE. This week both the nurse and dr said that they are convinced that those who use nothing have fewer problems. When I go back to the dressing rooms, there are normally ladies coming before me and after and we've discussed this. Absolutely none of them have had SE. They vary from ladies just startin to some who have already finished prior to this week. I have asked every last one of the BC patients I've met because I felt like you do. Some of them only had around 16 treatments but none have had burning, itching or any other problems. I certainly realize I could have an issue tomorrow but, knock on wood, none yet. They've just about made a believer of me.

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  • Nancy618
    Nancy618 Member Posts: 374
    edited May 2017

    Connie: That is SO good to hear!!! I may be worrying about something that will never happen. Maybe it's because of the size of the "dose" each time that keeps us from having any SEs? I just keep expecting the worst. I had only my second treatment today and feel a tingling, sort of like prickly heat rash, but there is nothing visible. I do have sensitive skin to a lot of things, so I guess that's why I'm apprehensive. I was told too that there is no scientific evidence that using any of these lotions and gels prior to radiation will change your reaction. We will see!!!

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited May 2017

    I had appointment today with RO after my treatment. She asked if I needed any sample or did I have some. I put Aloe on after treatment before I leave and aquaphor at nite. She said to keep it up. I have no redness or anything yet.Funny how they are all different. Years ago I worked for an Imaging Center with radiation therapy and we used to give patients aquaphor......so who knows


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  • LAW193
    LAW193 Member Posts: 69
    edited May 2017

    Today is my last day! My office surprised me with balloons and flowers and notes that made me cry. And breakfast.

    My side effects started after two weeks I think. My skin is itchy in spots and I get zapping pangs from time to time. Neither side effect is constant, just comes and goes. I am also fatigued and had a hard time with work this week. I am looking forward to a three day weekend to sleep.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    The only painful part of my rads so far (I've had four treatments)? Getting weighed as part of my visit with my RO yesterday! The nurse said this will be a weekly torture. I gained weight after my hysterectomy nine years ago and have not been able to shake any of it - I exercise and eat well but this extra poundage remains. I don't like to walk alone and am begging my DH to walk with me. I might just have to take off on my own!

    MJ


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  • Nancy618
    Nancy618 Member Posts: 374
    edited May 2017

    LAW193: Congratulations on the completion of your treatments! Your office is awesome. :-)

    Tappermom: I mostly walk by myself. There's a trail behind the Cancer Center where I go for treatments. I'm going to try it this afternoon when I'm done. I have mixed feelings about walking with my husband. He is so fit that he walks much faster and tires so little that I feel like I'm holding him back. But when he goes, and we talk, the time goes faster and I don't notice my hips hurting. :-)


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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    First week on the books! So far, so good. I'm just tired but part of that might be from the traveling and multiple work-related meetings!

    Have a great long weekend, everyone!

    MJ

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    LAW - congrats on completing rads.

    Tappersmom - yeah on completing one week.

    Happy weekend all!

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  • Nancy618
    Nancy618 Member Posts: 374
    edited May 2017

    I have completedmy first week...though it was a short one, as I started on Wednesday, so only 3 done, 17 to go. I'm feeling good. I'm tired, but it's not the radiation, it's my sleep being messed up by Femara. It has improved a little bit since I started taking it in the morning instead of at night.

    Congratulations Tappermom on completely your first week!

    Have a great long weekend everyone!

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  • Peetie1
    Peetie1 Member Posts: 73
    edited May 2017

    Hello All!

    I just had my 4/20 hypo-fractionated treatments today. I am a little worried because I am already a little sore and tired. The soreness is not unbearable, but it is not related to skin issues (at least I cannot see any skin issues). I think that it is nerve pain, and that scares me! Have any of you experienced this?

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  • SJI
    SJI Member Posts: 69
    edited May 2017

    tappermom We had surgery on the same day. Glad to hear your first week of ears went well. I start next week and am really apprehensive about it.

    At the planning appointment the nurse said to use lotion right after the first treatment. Funny how everyone seems to be getting different advice.

    I'll be riding the ferry a lot in order to get the 20 treatments. The way the ferry schedule is I'll leave at 11 am and get home at 6 pm. At least I work on a computer so I can take my work with me.

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  • Chloe2
    Chloe2 Member Posts: 40
    edited May 2017

    Hello everyone,

    I am wondering if anyone has had a metallic taste from radiation? I had rads 4 years ago to the right breast and did not have this issue. Yesterday about a half hour after my first treatment to the left breast it began. Have also had slight queasiness.


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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    Wow- that's a long day, SJI. My treatments have pretty much been a non-event. My center takes "films" M-W-F so I'm on the table a little longer then - maybe 15 minutes. I haven't gotten at all pink yet (even though I'm very fair and burn in the sun). My RO told me to use aloe vera gel so I've been putting that on after each treatment (I've had five) and after my shower.

    I've been very tired since Wednesday. Don't know if it's the treatments or not. I sent my DH out by himself tonight as socializing seemed like too much work.

    Chloe, I haven't experienced a metallic taste although I've read of others who have. No queasiness either - I get motion sick and so have been taking generic Dramamine every day for the car ride (the RO's nurse said it was OK).

    I'm glad to have a long weekend - only four treatments next week!

    MJ

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  • Hope88
    Hope88 Member Posts: 55
    edited May 2017

    Hey everyone,

    I have the last mapping on Tuesday and start radiation on Wednesday. Wish me luck...I am nervous.

    Hope all of you have a great holiday weekend

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  • Jenmia2002
    Jenmia2002 Member Posts: 20
    edited May 2017

    I did my dry run yesterday with X-rays and starts Rads on Tuesday. I forgot to ask why they take X-rays. Can someone tell me why they take X-rays weekly?


    Jen

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  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    I think they take X-rays weekly to make certain that weight gain or loss or whatever hasn't caused a need for them to shift where they radiate. I'll ask Tuesday because I'm really not sure of that

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited May 2017

    The x-rays are called Port Films. It is to make sure you are positioned correctly during treatment.

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  • susie_2017
    susie_2017 Member Posts: 155
    edited May 2017

    I have a question. I saw the RO and I was offered the old conventional radiation of 30 whole breast and then 8 of the tumor site, totalling 38 sessions. Or I could have the new way where they double the dose and get 16 whole breast and 4 of where the tumor was, totalling 20. The lesser radiation appointments seems better to me but a little worried about doubling the dose if I have side effects. Any of u doing this??

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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    Susie - I had the 16 and 4 boost to tumor bed rads. Worked for me with minimal skin side effects, which were my biggest fear. Let me know if you have more questions - you can PM me anytime, also.

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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    Here's a good link on port films: https://www.verywell.com/understanding-radiation-t...

    Good luck Hope88 and Jenmia!

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    Thanks for that link, Rose. My therapist just calls them films - they take them M-W-F at my center.

    MJ


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  • Nancy618
    Nancy618 Member Posts: 374
    edited May 2017

    Susie: I am getting 16 regular treatments and 4 boosts to the excised area. I wasn't told it was a double dose. I have only had 3 treatments, so I haven't had any SEs yet.

    Jenmia: I only get an xray once a week and I was told that it's because our bodies can change ever so slightly but it can make a difference where the radiations is aimed. They want to make sure it's going to the right places.

    Hope: I think once you start the radiation, you'll see how easy it is and any anxiety will drift away. Honestly, I was amazed at how quick and easy it was compared to that awful day of mapping. I'm in and out in under 15 minutes.

    I just wanted to give blanket permission for anyone here to privately message me too. Sometimes it's easier to compare notes without cluttering up the board.

    Enjoy your time off on Monday everyone! Back to the rads on Tuesday.

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  • antmil01
    antmil01 Member Posts: 1
    edited June 2017

    Hello Ladies just wanted to encourage all of you going through radiation. I was very apprehensive at first with my treatment also... but I have completed 19 of 21 treatments with very little SEs (YAY FOR ME). Initial consult with RO was advised I would have 15 total treatments,10 double 5 boost. Well I'm special had to have re excision because my lump @ 2.5 cm was actually 4.3cm. Just proves diagnostics are not perfect therefore the additional 6 treatments. YAY FOR ME!!

    I did have the metalic taste during the first 3 or 4 sessions, slight itching, light pinkness, a little rash, but it's all been a breeze compared to some of the stories I have heard. The Cancer center i go to provided a lotion to use 4 times a day that I highly recommend "My Girls". You can not moisturize too much and don't forget to drink as much water as you can.

    Now I need this holiday to hurry up so I can go lay on the table for 15 seconds for 2 more days and this journey will be over and Again I can say YAY FOR ME!!!!!!

    HAVE A BLESSED DAY!!!!

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  • bravepoint
    bravepoint Member Posts: 404
    edited May 2017

    I got Xrays, day 1 then day 8. My RO didn't like the positioning so more Xrays day 9 and 10. The final Xray was at the start of my 4 boosts. I wasn't given any option of shorter and had 25 + 4 boosts. I was told that I'm at the upper limit of what you can be exposed so doubling up was not an option, I guess. My skin was fine until day 22. It's much redder and sore now as I sit with 1 boost to go.

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  • LAW193
    LAW193 Member Posts: 69
    edited May 2017

    I was also given a choice and went with the shorter period - 15 whole breast and 4 boosts. It is a higher dose but not fully double, so the overall amount of radiation is actually slightly smaller with the shorter period which leads to fewer side effects. The side effects are cumulative and seem to have more to do with how much radiation you've had total than how much you have per day -I felt nothing at all the first week. I finished on Friday and by the time I finished I was slightly red, slightly itchy, and the skin is a little sensitive. I've been getting pangs in the scar area but maybe that's still from the surgery, I don't know. I think I still have a seroma so it's hard to tell what is pain from radiation vs surgery but it's not bad.

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  • Peetie1
    Peetie1 Member Posts: 73
    edited May 2017

    LAW193,

    Are you completely finished with your rads treatments? I am using the same protocol as you, and I just completed my fourth treatment. I am a little bit sore and tired, but it's not terrible. If you are finished, will you tell me what to expect next week?


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  • bravepoint
    bravepoint Member Posts: 404
    edited May 2017

    Last boost done this afternoon. Now to heal.....


    Hang in there to everyone still going thru rads.

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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    Congratulations Bravepoint! How did your skin hold up? I think most of our treatment centers are closed today. My boob is happy for the extra day off!

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