Starting radiation September 2017

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  • deedledee
    deedledee Member Posts: 63
    edited October 2017

    Great news glasglowgirl. Welcome to this side of the journey. My decision was mild from Rads. It was the start of the second week after that I'm having rash at the Lymph site. It's tolerable though. Hot onto LYMPHEDEMA specialist this am. Have sleeve, gauntlet and compression bra on order. If we don't get them before the trip she'll loan me something. Got medical alert bracelet delivered last night. Lymphedema specialist confirmed I will need to watch for LYMPHEDEMA the rest of my life. MO needed in this arm or bp tests. Have a wonderful weekend warriors!!🍀💐

  • JennD
    JennD Member Posts: 29
    edited October 2017

    woohoo MommaOz! All the best with the next stage!

    MelDent- I'm with you, one more week. Finish Friday the 13th. So excited!

    I have a four day weekend this weekend (Canadian Thanksgiving) and I feel like I broke out of jail, haha.

    Anna, I didn't notice real burns until My last week. I'm done whole breast and start 4 boosts Tuesday. But I hope you continue to enjoy being burn/rash free.I think some people don't have any reaction at all!

    Have a great Rads free weekend everyone!

  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    thanks glasgowgirl and congrats to you as well! I had a 4 hr round trip each day but my husband drove me most days and a friend on the days he had work.. so it was grueling

    Glad your back home!



  • lovepugs77
    lovepugs77 Member Posts: 296
    edited October 2017

    8/30 done. No skin reaction so far, but I have some pain in my left arm that the RO thinks is the beginning of lymphedema. Eval with OT on Tuesday, so we'll see

  • bmm11071
    bmm11071 Member Posts: 13
    edited October 2017

    Good to hear so many are near the end! I have 1 more full breast and 7 boosts. So happy to be seeing the end. Skin still pretty good. Still just so tired. I seem to feel better if I keep pushing through. Have a great weekend everyone

  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    I rang the bell yesterday! And just like Mamaoz I burst into tears.

    I will meet with my MO this coming week to decide what route to do. Chemo has put me into menopause and my blood also states I am in full menopause.

    Hugs to all

  • Eleanor1960
    Eleanor1960 Member Posts: 9
    edited October 2017

    I will start my boost radiation mid next week. My skin is tender, sort of brownish/reddish with funky indentations at the incision site. I am not looking forward to the boosts and concerned that my incision may open up at that time. It took four months for it to heal originally related to a seroma that wouldn't stop draining. I am still battling fatigue. My RO strongly recommended Wisconsin Ginseng for the fatigue. I finally ordered some, and it is due to arrive today. Has anyone else taken it for radiation fatigue? I am willing to try, but I don't have a lot of faith that it is going to help.

    Also way to go Glasgow Girl! I am so happy for you that you are done and can be back home for good. I see that you have already been on the Arimidex for 2 months now. Have you noticed any weight gain or had any trouble with your BP? I am concerned about taking it because I have heard from many about increased weight, BP and cholesterol.

    Thanks again to each of you that post and share your stories. It helps to remember I am not alone.

  • deedledee
    deedledee Member Posts: 63
    edited October 2017

    Congrats shelabela!! Have a wonderful weekend. Celebrate 🤗🎉

  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    yeah🎉🎉🎉🎉shelabella!!

    But admit it felt good to cry and get it out!! Its just amazing how strong we are holding it all in.just trying to get thru it all ... . but its good to have a little release ...

    Enjoy the weekend and hope you heal quickly


  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    mamas, yes I got so darn relaxed after. I thought i would do good but my radiation techs were crying when i rang the bell and that did me in. I had the same 3 techs the whole time.

  • Castigame
    Castigame Member Posts: 752
    edited October 2017

    Congrats to mamaoz and shelabela!


  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    thanks mimi

    Hope you are well

  • VLH
    VLH Member Posts: 1,258
    edited October 2017

    Congratulations to those finishing their radiation treatments. Yay for you!


    I'm a little more than one week past my final treatment. Initially, I just had the appearance of a typical mild sunburn across my treated breast and upper chest with a little more reddening at the sentinel node biopsy site and along my reduction scars. Now, I have many small brown elevated dots that look a bit like moles and numerous reddish, rather irritated looking "freckles." My nipple is swollen while the areola looks somewhat shriveled. The skin on my upper chest is intermittently itchy and I'm extremely tired, but I feel like I've gotten off easy in terms of short-term side effects.

    I felt a little emotional at my final treatment, too, but with the lymphedema and neuropathy issues, completing radiation didn't provide the feeling of triumph I'd expected. If I use a lymphedema pump for an hour daily, It will be an unpleasant reminder of the disease so the constant worry can't fade over time as some survivors have mentioned. Hopefully, however, as my endurance improves & my life becomes busy and active again, cancer won't be as intrusive in my thoughts.

    Hoping your side effects are minimal or non-existent in the week ahead,

    Lyn

    We're "aware"...

    We need a CURE!!!

  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    lyn

    Thanks for your info, interesting you mention the moles amd mew freckles I asked dr on my last day anout a new mole that appeared just under radiated area , was told thats common...whatever..

    Hope your feeling better , i know the fear of lymphedema is always present.. I go to pt ...

    as for feeling triumph.. hardly .. its rather anti climatic and really not knowing. If its really gone?.. well it leaves one slways praying..

    One day at a time

    Mamaoz

  • VLH
    VLH Member Posts: 1,258
    edited October 2017

    If not for the permanent side effects, I think I would have at least felt a sense of relief at completing all cancer-fighting treatments and moving to just quarterly follow-up appointments, MamaOz. As is, it was slogging through one more thing in the 17 months since I found the lump in my breast. I'm sorry to sounds like a Debbie Downer, ladies. It really is nice to put the daily zapping behind me. :-)

    Lyn

  • JennD
    JennD Member Posts: 29
    edited October 2017

    Congratulations Lyn!

    You are not a Debbie Downer! The lingering effects of this disease make moving past it so difficult. We all yearn to be beyond it and yet it seems to pull us back in with the effects of treatments meant to give us longer, better lives. Ironic for sure. I, like you,have noticed all the strange bumps and burns which I hope will improve over time. But the fatigue is killing me. I'm getting more and more anxious for the boosts as my breasts are so tender to begin with. But then there is that extra layer of protection the Drs promise I will be given by doing them. This constant weighing of odds has been the most frustrating part for me. Now look who is being a downer!

    I hope and pray time will make all this better. Thinking of you all this Canadian Thanksgiving weekend and feeling gratitude for a community to share the victories and challenges of this damn disease!

    Jenn

  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    yes girls we need to keep positive!

    My husband is glad its 'over'... and he thinks I need to focus on other things instead of what side effects the arimidex may cause... ( I took my first pill today)

    Well easy for him to say.. he has been by my side thru this whole ordeal cheering me on , driving etc but after 11 months I guess he wants the ordeal to be behind us..

    Im so glad I have you all to lean on.. as others... our family and friends just dont understand the limbo we are left in...sorry just one of those days..

    Wishing Sunshine ☀️🌞☀️To all

  • Canela
    Canela Member Posts: 26
    edited October 2017

    Congrats on finishing rads, MamaOz and shelabela!

    My underarm is now very red and I noticed a tiny peeling spot. I feel the occasional twinge but otherwise it's not painful. Never thought I'd be grateful for the mastectomy but the whole area has been pretty numb which has made this experience tolerable. I can tell just by looking that if not for that it'd be very painful. The skin over the TE has these tiny dark spots that almost look like my legs after shaving. Those of you with pale skin and dark, coarse hair know what I'm talking about, lol.

    Just 3 treatments to go followed by 5 boosts. And then it's limbo, like MamaOz said. Now that it's almost over I just feel weird about it.

  • deedledee
    deedledee Member Posts: 63
    edited October 2017

    I'm with you. Red bumps and itch starting to become freckles at lymph site and now under the breast. Got a little blister under the breast now opened. Owie. Wasn't sure if it was a blister or not but found out the next day! My husband who has been great through this all is also ready for me to move on. He thinks I spend too much time researching and on the site. I explain how I need to because I keep finding more important information like learning the lymphedema risk and unfortunately we are not "cured " with this disease. I know he's right to a point as well though. Will be trying to find a balance. I'm so sorry we find ourselves here but am also so thankful to find others who understand this crazy journey and the real need we have for information. One day at a time my warrior friends.

  • MommyErin
    MommyErin Member Posts: 187
    edited October 2017

    Congratulations MamaOz and Shelabela!!!

    Weighing in on the AI discussion, I'm pre-menopausal so I've been receiving zoladex to suppress my ovaries and have been taking letrozole for the past month. Hot flashes haven't been too bad. I'll have an oophorectomy/hysterectomy after radiation. The surgery is mainly because of my brca1 gene mutation, but if it plus letrozole help keep the cancer gone, I'll take it! Being stage IV though, I'm willing to do almost anything, so definitely do your research and think about what's best for your situation.

    My voice is still pretty hoarse and my RO thinks it's due to radiation, but isn't concerned. My radiated "breast" area (I'm flat now) is barely pink, but my upper chest and neck are approaching red. 17 down, 15 more to go! Can't wait to put this behind me. Thank goodness it's going quickly!

    Hope everyone had a wonderful, relaxing weekend! (I spent mine planning my almost 5-year-olds birthday party)

    Xo,

    Eri

  • Bromeliad
    Bromeliad Member Posts: 10
    edited October 2017

    Update: I am 10 days out from finishing radiation treatment, and I am experiencing some rawness and minor weeping around my nipple. I'm still using the calendula cream. There's not much pain, but I have noticed more twinges later in the day. I have an appointment with my breast surgeon this week. I hope this all clears up soon. BTW, I've also started on Tamoxifen and knock on wood, so far so good.

  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    thank you mommyErin, your more than 1/2 way!!

    Im flat as well I had 28 with a bolice each time I'm currently brown toast color where radiated but thankfully no open sores its a bit itchy , cortisone cream is helpful but thru out I just used 100% aloe gel.. it is sore to touch but so far ok. And yes my throat is scratchy as well. My main issue is the tiredness which followup nurse said could last 4 weeks ..

    Wishing you the best! A 5 yesr old! Wow .. but I am sure she /he is a motivating inspiration for you💕

    I know my 18 month grand daughter is mine

    Mamaoz


  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    First day on this forum and learning so much. I'm scheduled for my lumpectomy later this week so probably won't start radiation until later this month. I was told I had to heal first and then I would start. Interesting to read about everyone's appointment times. I assumed I'd go the same time every day. I have no idea what the simulation, tats and mapping are that you are talking about here. Guess I'll be learning soon. Have a nice day.

    Clarify - I joined here a few months back. Today is my first day to post anything.

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited October 2017

    Ellyn, welcome to the group. This site really is a wealth of information.

    My rads appointment is at the same time every day, and I think some others have the same kind of setup, so yours might be, too. Here's some information about simulation: http://www.mayoclinic.org/diseases-conditions/cancer/multimedia/radiation-therapy/sls-20076358

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Thank you so much lovepugs77. I'll definitely look into that.

    Question for all - what do you wear to your radiation appt? I keep hearing about how sore I will be. I kinda did some retail therapy and bought a few loose fitting black tops in case I'm uncomfortable in a bra. I'm large on top and not loving that idea though. Just wondering. Thanks

  • shelabela
    shelabela Member Posts: 584
    edited October 2017

    lovepugs interesting you posted something from Mayo... Are you going there? That is where I go for treatments.

    Welcome Ellyn, We will help answer your questions how ever we can.! I wore a lose fitting top and a sports bra to radiation. My appointments were at different times of the day. I actually had a couple that were at 9:30 PM. That sucked as I drove each day and it was an hour drive one way.

    My skin is getting very raw! I had hoped that it would not. So much for the $100+ I spent on the mepitel! But who knows I guess it could of been worse. So far no blisters just very raw and red. And I am so tired! I could sleep for 10 hours and wake up tired! Did anyone you use a prescription cream for the itching? Horrible with names but I think it is Elocon


  • MamaOz
    MamaOz Member Posts: 432
    edited October 2017

    Sheila, I was just told to use a cortisone creme..havent had to use any even tho I was itchy. I have used 100% aloe so far which was soothing and now that im done ive been using aquaphor because its a heavier cream to help lubricate my fried tight skin . Tired is still an understatement which nurse said could last several weeks after being done

    Welcome ellyn!

    On day 2 of arimidex!

    Mamao

  • Eleanor1960
    Eleanor1960 Member Posts: 9
    edited October 2017

    My breast is just aching today, I snapped at my husband and I simply do not feel well. I think some of it is just the relentlessness of having to do this each day. I know, I know, I just came off the weekend, but I found myself lying in bed last night thinking, I do not want to do this again tomorrow. Ok, enough complaining. My skin is still intact, but the nipple is pretty dark and uncomfortable. I am using Miaderm Radiation Relief (pricey but not as expensive as what Shelabela is using). I tried the Wisconsin Ginseng yesterday but nothing interesting to report, still exhausted...it probably doesn't work that fast!

    Also, welcome Ellyn. I joined earlier in the summer but only found this thread when i was halfway through my radiation. As for appointments, mine is at 10:15 a.m. every single day. They are usually running on time, and I was out of there by 10:26 this morning. I think the thing that amazed me the most is how quick the treatment is. What day is your surgery?

    Sitting down to work on insurance paperwork...


  • deedledee
    deedledee Member Posts: 63
    edited October 2017

    Ugggh with the fatigue. Thought I made it through Rads well. Now two weeks today. I have been tired all weekend. I rested and went out today. Thankful it is a holiday for me. Picked up my AI ( will stare at the bottle until about Nov 15th) had a nice lunch with DH and went to Ross to look for a small bag for the trip in a couple of weeks. I am done in. Taking a nap now. DH promised to take me out later after I rest to look more-didn't find what I'm looking for. Glad to see what you wrote mamaoz. I thought I was just being a wimp. Catch up with everyone soon.

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited October 2017

    I believe I will be starting rads this month (October) so I came here to ask if you guys are all able to continue working full time durings weeks of daily rads? The booklet I received from RO talked about SEs and fatigue that can make it difficult to work full time especially through the last half of rad treatments

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