Winter 2015-16 RADS

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  • KCinMN
    KCinMN Member Posts: 81
    edited January 2016

    etnasgrl - definitely try exercise! I head to # 23 of 33 today, and the fatigue hit hard this past week or so. Out of nowhere. But I exercise daily, and it's crazy cause the days where I do work out just a little more... I always feel better!

    And I go to bed early! :)

    Jabe - cute pic! Congrats to you and Octo on finishing. I know I'm probably missing someone and I apologize! I'm always encouraged by you ladies forging the way ahead of me! This thread is flying though; can't keep up! Love it!

    After today's treatment, just 10 more for me! Looking forward to being done!

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  • KateB79
    KateB79 Member Posts: 747
    edited January 2016

    Mdoc, I'm with you on the heart thing. Until I heard those words, and actually saw my own scan, I was still on the fence about rads, since I'm in a "gray area." Now that I know my heart is clear, I feel more confident. Or at least less dubious.

    Kimmer, my MO wanted me to start Tamoxifen right away, too, but deferred to my RO, who wants me to wait. His logic is that if I have SEs, we'll know it's the radiation and not the Tamox. My MO is fine with me waiting, so I guess I'll be starting Tamoxifen in March. I'm hoping my ovaries stay nice and quiet until then; no one is sure if chemopause will be permanent or not, given that I'm 36 and, until chemo, have always had clockwork cycles.

    Re: faitigue. . . I think it affects everyone differently, kind of like chemo. I'm taking the same approach to rads as I did to 4.5 months of chemo: know what side effects are possible and be prepared for them, but don't expect them. That said, I have my fingers crossed that the fatigue is manageable. My RO (and his great nurse) assure me that radiation fatigue is nothing like chemo fatigue. Here's hoping!

    My RO is open to a lot of things. For example, he'd never heard of Miaderm; I sent him a link last night, and he said it looks like it's worth a try. I was adamant about taking vitamin E, because it's the only thing that's helped my hot flashes/night sweats, and he said, "if it's affecting your quality of life in a positive way, then you should keep taking it. Just no high doses of vitamin C or other antioxidants." Then I was able to convince him that CoQ10, which I take because I'm on Herceptin, isn't a true antioxidant. I like this guy.

    And exercise. Yes. I haven't been to the gym in months, due to no energy and being immunocompromised, but the plan is to get back this weekend. We shall see!

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  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Kate- your RO sounds great! I really like mine to and his nurse is a gem! Please tell me about CoQ10 and Herceptin. I'm on Herceptin as well. Would appreciate any info. Am waiting to start AI until after recheck with RO. MO said to start day after rads ended but RO wanted to wait to give my skin time to heal I am glad!

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  • KateB79
    KateB79 Member Posts: 747
    edited January 2016

    HappyHammer, CoQ10 can act as a cardioprotector. I can't say for sure whether it's working for me, but I'd rather be safe than sorry with all things ticker-related. There aren't a lot of clinical studies on CoQ10 and Herceptin, but there are quite a few discussion threads and a couple of doctors' blog posts; Google "CoQ10 and Herceptin," and you'll find the stuff I read! Here's one from an integrative oncologist:

    http://www.blockmd.com/blog/protecting-your-heart-...

    I take 100 mg per day. It's fat-soluble, so best to take with food.


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  • Fearless1956
    Fearless1956 Member Posts: 106
    edited January 2016

    This thread definitely moves quickly.  I wish I had the time to get on and read every day but I have too much going on most days, with work and then home and family/friends time. 

    Congrats to Happy Hammer, Cardinal, Jabe, PattyMeg, and ctgal48 on finishing your rads!  I know you are glad this phase is behind you.  Ivy2, etnasgirl and Jerseygirl, prayers for you as you are getting started with your rads.  (I'm sure there are others that I may have missed)

    This morning I've finished day 9 of 16 treatments.  So far, I'm not having any skin color changes.  There are some skin areas that appear "wrinkled"---kind of how it looks when plastic melts.  But, it only looks that way right after treatment and then seems to subside.  I'm feeling a little tired today for the first time. I was able to talk to my RO this week and she helped to clarify some of my earlier questions.  She also told me that I may not see much color change until next week.  I will not be having any boosts.  She explained that my "double dose" during the 16 treatments covered all that I needed. 

    As I read all of your posts and see your "signatures" of diagnoses and treatments, I note that many of you have IDC.   I have DCIS and that makes me wonder if my overall dose is less than those of you with IDC, especially since I'm not having a lot of the side effects that many are having.   I have such great admiration and respect for those of you who are experiencing way more than I have so far.  My 80 year old mom is also a strong role model for me,.  She finished her rads about 2 weeks ago and is still healing (she is IDC, stage 2).  I love the support for one another that's on this thread and how you all stay upbeat and positive.  To me, staying positive as much as possible is the one thing that keeps me going.  That's not to say that I don't have my "down" times, but overall, I just try to keep pushing along on this journey and reading this thread always provides additional encouargement.  You ladies rock!!!!! 

    Hugs and prayers for all,

    Debbie

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  • justmaximom15
    justmaximom15 Member Posts: 264
    edited January 2016

    Congrats to all those who have finished rads, those of us who have finished another week and those who are growing hair!!

    El Tigre, I was node positive and I am already taking tamoxifen. Neither my MO or RO made any mention of the need to wait until after rads to begin. I did have to wait until I switched from one anxiety med to another but as soon as I did that I began tamoxifen and it was actually the same week I started rads.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited January 2016

    El Tigre... I was node positive and my onc said I could wait until after the rads were to start Tamoxifen. She said they usually do treatment in succession, (i.e. chemo, surgery, rads, hormonals) but some people take it during...

    5 down for me today, 25 to go!

    Warrior On!


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  • KateB79
    KateB79 Member Posts: 747
    edited January 2016

    Anyone using Miaderm? My RO is giving me that option, instead of starting with Aquaphor. . . . I'd just as soon save ruining my clothes for if and when the need arises.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited January 2016

    I'm using Miaderm and it's been great! The doc looked at my skin today and was really happy with how good and soft it is...

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    JerseyGirl, does your miaderm have lidocaine in it?

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  • Fearless1956
    Fearless1956 Member Posts: 106
    edited January 2016

    I'm also using Miaderm and not having any problems with it.  No staining noted.  It's water based.  And, to Marijen---no lidocaine. 

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  • JuniperCat
    JuniperCat Member Posts: 658
    edited March 2016

    Hello! Do you use the Miaderm a week before you start rads to prepare your skin ahead of time? I'm starting radiation either at the end of Feb or beginning of March. I have very sensitive and fair skin. Thank you!!

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  • Fearless1956
    Fearless1956 Member Posts: 106
    edited January 2016

    I was instructed to begin using the Miaderm 2-3 times per day about 3 days before starting rads. 

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  • KateB79
    KateB79 Member Posts: 747
    edited January 2016

    Juniper, I have very fair skin (I'll burn within 20 minutes in the summer sun), and I'm planning to start the Miaderm about a week ahead of time. That's probably neurotic, but . . . well, if the shoe fits. . . :)

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Miaderm main ingredients are Calendula, Aloe Vera, and Hyaluronic acid. So expensive. The ingredients are hidden at Amazon.

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  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited January 2016

    My Miaderm does not have lidocaine... My PT said start using it the week before, and my RO looked at my skin today after my first week of rads, and he was so happy with how it looked! I hate the expense, though!


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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    WooHoo....first week of Rads is DONE!!!

    Minus that first day redness, my skin is doing fantastic! Aloe right after treatment, in the dressing room and Aquaphor in the evening, before bedtime seems to be doing the trick. (So far anyway.)
    Thrilled to get the first week done! I've met some pretty sweet ladies in the waiting room, we've all seemed to really hit it off. The nurses call us "the pink warriros". I love it!

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    So I was told by Radiologist's nurse that Calendula (found in Miaderm) heals the skin. Therefore I have already started putting on one side. She recommended First Aid Brand, found at Whole Foods, only $7+. She said I would need about 4 tubes, I plan on at least six. Plus Aloe, plus aquafor. I am a pain baby. Even a rash makes me so uncomfortable.

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  • tshire
    tshire Member Posts: 239
    edited January 2016

    treatment #17 today and just now starting to show a bit of pink. Some nipple pain too. But that's about it. Halfway done woohoo

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  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    I have used several different things along with Aquafor...will say that the Aloe actually hardened and felt like very irritating and hurtful pieces of glass...tried it several times and finally gave it up...it hurt!

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  • Duzy
    Duzy Member Posts: 134
    edited January 2016

    My turn to be added to the list. I go for my SIM on Monday and will start a week later - 2/1?. They said 33 treatments with the last 5 as boost. I will be at 4 weeks post surgery for my SIM and still have some trouble extending my arm. Can anyone tell me how long you have to have you arm above your head? I was also surprised that my BS did not give me any specific exercises to gain range of motion just told me to stretch until it feels like it is pulling and then stop. Is this normal? I know her biggest concern was giving time for the nerves and remaining lymph nodes to heal. She also said no exercise until 5 weeks post surgery.

    This is a fast thread so congrats to everyone who has made it through and I will be using tips given on her. Good Luck to everyone just starting for minimal issues and for the rest of you good luck on finishing through your remaining treatments and healing well. My RO said just to use Pure Aloe to start

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  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Duzy I'm on your schedule. I think stretching as need is the best advice. Your BS is ok to say that

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  • Duzy
    Duzy Member Posts: 134
    edited January 2016

    Marijen thanks for the quick response. I just hope I can keep my arm up long enough to have the SIM completed. It will be nie to compare tips as we move through those 6 weeks and hope it goes quickly.

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  • Suz-Q
    Suz-Q Member Posts: 205
    edited January 2016

    Hi Duzy, I did physical therapy to improve my range of motion and reduce the axillary webbing that had developed. It really helped. I still do some of the stretching exercises. My surgeon referred me to PT after I complained about muscle tightness. My PT is trained in massage and works with many BC patients.

    The sim is the longest time in the entire process that you will have your arms up. Treatments go very quickly.

    Good luck

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  • TallnTerrific
    TallnTerrific Member Posts: 114
    edited January 2016

    I am finished with my second week, 9 of 28 treatments. I have noticed a soreness in my throat on the side of my radiation. Also I am having eye flashes of light. I have had a torn retina in the other eye, but had the retina checked out and it is fine. Anyone else noticing these symptoms?

    Also I didn't see anyone talking about using Momentasone cream? My RO has insisted on it twice a day in combination with radioplex cream. Anyone else use it?

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  • Grammy4
    Grammy4 Member Posts: 56
    edited January 2016

    Wow, exciting so many have completed Radiation this week. congrats to you.

    I hit the half way mark this week Whoo!!

    I will chime in on the emotions during rads. I too am ready to decrease the number of doctors. So when the RO said she would be checking me often after rads I just cried so hard when I got back to my car. I wanted to have rads, check that box and move on. I am better now but I would weep at the drop of a hat at the beginning of rads. Now I am on the down slope and the tears are less. When I confided in the Rads nurse she said it was totally normal reaction and many have emotional upheaval at this time due to the fact that for months we were consumed with chemo, decisions, appointments and side effects and now there is a lulled in things which give you time to assimilate all that you have been through..

    My MO will start me on Arimadex two weeks after completing rads. So far, I am just pink from the treatments. My place gave me a cream called Radiaguard and I use that 4 hours before treatment, right after treatment and at bedtime. so far so good...

    thank you all for sharing your experience. It is very helpful.

    Be safe if you live in the eastern part of the US. The snow is intense right now...


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  • 2mnykds
    2mnykds Member Posts: 5
    edited January 2016

    I haven't been on for a while and want to say congrats to those finishing. 😄 I'm almost halfway there at #9 of 20 completed.

    One of the things I love about reading these posts is realizing that I'm not going crazy. I didn't have chemo but radiation has made me so emotional. Anything anyone said to me I burst into tears. My Dr said it's because it's finally calmed down in my life and I'm finally processing everything. Since my dx my life has been busy between appointments surgery and holidays. It's just nice that it's a normal reaction.

    Just wanted to say thank you to all of you that post. When I find the time to read it can bring a smile to my face with all the support I see. Hope everyone enjoys their weekend and the two days off

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited January 2016

    two down, 31 to go. I too am emotional. I'm just so sick of it all. I'm in remission, so this is just preventative. I think that makes it harder to want to go. Chemo and surgery sucked, but I felt good about them because I wanted to be cured. I kept up a good attitude through all that, but now I feel pissy.

    duzy, I had my arms up for about 40 minutes, but they were supported. My BS gave me a sheet of 5 exercises to do every day to regain range of motion.

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  • Suz-Q
    Suz-Q Member Posts: 205
    edited January 2016

    TallnTerrific, my RO prescribed Momentasone cream. I used it from the start and still am. It's all I've used. RO said to keep using it two weeks after the last treatment. I didn't have any severe reactions to rads. I don't know if it was the cream or me. It's a corticosteroid so it should keep some of the inflammation, itching and pain down. Nothing will make our damaged skin and tissue heal faster except time! My "radiation rash" is starting to resolve. I see larger islands of normal skin among my rash area.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    I finished my first week yesterday and already my breast is sore and sensitive. (Not terribly bad, but noticeable, especially when I take off my bra.)
    My breast have always been super sore the week before my period, so I'm not really surprised, I just hope it doesn't get any worse.

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