November 2018 Starting Radiation

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  • Lucyred
    Lucyred Member Posts: 64
    edited November 2018

    Spoonie, I have what I think you are describing. Just one blister/acne like bump. It’s doesn’t hurt and not getting any bigger and on the edge of the radiation area. I haven’t called RO about it yet since it’s still the same size. It showed up a couple days after I finished

  • journeyforward
    journeyforward Member Posts: 42
    edited November 2018

    Urdrago71 - Thanks for the posts about drinking plenty of water. I always need reminders!! I went for an afternoon cycling out in the cold and I need to HYDRATE :)

    DWisely - I hope you get to feeling better real soon:)

    Appyfan - Thanks for the cute pics - I'm hoping to adopt a dog in the future...I have a beautiful cat already and I'm just not sure how she will feel about sharing the house with a pooch.

    To everyone - I'm sending good wishes and the best to us all as we start a new week of radiations... I'm a bit nervous about the boosts starting tomorrow at 8 am. My skin is bit raw near my sternum and that is very close to the focal treatment area.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    Those four days off from treatments went waaaay too quickly. I enjoyed sleeping late and staying moisturized on MY schedule. Back to the grind bright and early tomorrow. Ugh, I am NOT looking forward to the post-holiday weigh-in on Tuesday! Hope everyone had a lovely holiday.

  • ghostie13
    ghostie13 Member Posts: 59
    edited November 2018

    Looks like I might have another set back.....woke up this morning to a swollen, red and very painful breast. Appears to be infected but how in the hell would that happen?? The blister is healing and doesn't look infected.....could the seroma somehow be infected? I don't get it, my surgery was in September, why do I keep having all these god Damn problems??? Called the on call doc, started on antibiotics, he said radiation is up to that doc and I can just see her taking one look at this breast and saying nope, not happening.....

  • HoldingOnToHope
    HoldingOnToHope Member Posts: 12
    edited November 2018

    wlo002-I am also dealing with TE’s during radiation and then implant exchange will be in June. I am having pre-pectoral (on top of the muscle) implants.Radiation treatment #7 of 28 is tomorrow. Are you done w/ radiation now? How did it go?

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Ghostie, I hope it isn't serious and you can get in and started on radiation. I can't imagine why it's red and I would be frustrated w it too.

    Alice, me too X 1000. The red tenderness from last week has faded and I don't want to start again. Only 12 more to go!

    Journey, I hope your boosts go smoothly and that area near your sternum doesn't get any redder.

    Do you all notice a big difference in the temperature between your radiated and non radiated breasts? These four days off gave my treated breast enough time to cool off and be almost the same temperature as my non-treated breast.

  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited November 2018

    DWiseley, I never thought to check before you mentioned it, but I just did, and indeed the radiated side is much warmer than the other. Interesting!

  • mLghtn
    mLghtn Member Posts: 101
    edited November 2018

    Hi Everyone,

    I'm so glad i had the 4 days off, finished whole breast last wednesday and then felt extremely fatigued and achy for about 3 days, reminded my of the chemo days ugh... and so I'm dreading going back for the boosts this week. My skin kept recovering up til the last 2 tx and now it still hasn't recovered from those, rather it got worse even the days after tx like they said would likely happen. Its ok on most of the breast but the upper inner quadrant of chest/breast is red and has these raised itchy bumps. The itchiness combined with tender/achiness is really driving me nuts. Nothing I put on it seems to make much difference. I'm taking benadryl again tonight since that at least helps me sleep and in the am its usually a little better. Seems like activity causes it to heat up and flare up again each day (that breast always gets hotter with activity now). I will ask the nurse about it tomorrow, also really hope the boosts don't affect that area. Is anyone else experiencing this rash ? Hope everyone enjoyed the holiday, wishing us all a good week...

  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    Hi Spoonie77 - I'm SOooo sorry you're going through all of this and continue to be impressed at your positive attitude throughout. I'm not done yet either BUT I found a couple articles online about if you get a rash after radiation. It *might* be an infection so definitely call your doctor?

    https://www.mskcc.org/cancer-care/patient-educatio...

    "You may also notice a rash, especially in any area where you have had previous sun exposure. Although this may be a side effect of treatment, a rash could also be a sign of infection. If you develop a rash at any time during your treatment, tell your doctor or nurse."

    AppyFan - OMG love your post! Hopefully this "other Domino" finds a good home.

    ghostie13 - I'm not an expert, but based on what you are saying, it sounds like your body needs to heal before starting radiation. Keep us posted on what the doc says. Maybe you should consult with the surgeon too? See if what you're experiencing is normal or not?

    Dwisely - thank you for being so supportive of everyone on this thread, even just to chime in with support! Just wanted to say we're here supporting you too. Also I just checked, I don't know if it's in my head but I really think my radiated breast is slightly warmer!

    mLghtn - I'm not sure if it's related but the radiation therapists told me the skin is always shedding and skin underneath surfacing, so it's possible this new itchy rash area was just the skin underneath that was getting hit with radiation and is more damaged, and now it's come to the surface. They said it's why we all might continue to see SEs in the weeks following radiation and should continue to use the lotions (for me, Miaderm and aloe vera) to treat the skin. Good news is that too should shed and new, untouched healthy skin should eventually surface...

    egregious and rileycat - best of luck with your rads start! If it's reassuring to know, I've been using Miaderm and Aloe Vera and I'm through 18 out of 30 treatments with no visible side effects yet. I lotion morning, night and immediately after the radiation treatment. Also, my father-in-law went through 38 radiation treatments (for prostate cancer) and I asked him today whether he had any side effects, and he said his only side effect was when he tried to skip one treatment and got in trouble with his wife!

    urdrago - thank you for the water chart! So basically I should drink 10 cups of water a day.

    misstic - congrats on being done with rads and thank you for the well wishes!

    alicebastab - agree re: the post holiday weigh-in. I had lost weight since the diagnosis, but I think I "found" a few pounds this weekend. :-O

    journeyforward - best of luck to you as well with your boosts, let us know how it goes.

    ALL LADIES... here is another pic of Domino in commiserating with all of us and saying that it's A-OK for us to feel a bit like plopping down like this in the midst of / during / after our treatment... hope we all enjoyed the weekend break. Tomorrow I resume to finish the final 12 sessions, wish me luck!

    image

  • egregious
    egregious Member Posts: 240
    edited November 2018

    Pebbles, that's a funny story about your father-in-law, the only side effect he had was from his wife when he tried to skip a session :)

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Thanks everyone for the continued support and help. I really appreciate it. Struggling emotionally and physically.

    I'm currently awaiting a callback from my cancer rehab PT and my MO's nurse. My "rash"or whatever it is, (basically individual red solid "dots" following a linear pattern) is continuing to follow the line of the radiation field in the middle of my chest and up around toward my armpit. It's bizarre. I hope it's not an infection but if it is I guess it's much better to start treating it now vs later. Doesn't look like an infection to me, no fever, no heat, no pus, but hey I'm not a dr. On the other hand my treated breast is very swollen today, hasn't been this way since 2 weeks after RADs was over) and painful.

    So IDK what the heck is going on, definitely doesn't seem like "oh you won the lottery" type of day! LOL.

    Welp, check that, RO just called. They want me to come in tomorrow and see them. Better to have eyes on it, they said, and go from there. Will keep everyone posted.

    Mlghtn --> Good luck with your boosts! Hope they go fly by without an increase in SEs!

    Dwiseley --> Hope you are feeling a bit better now with a few days of meds in you! Fingers crossed. Oh, and about the heat difference, yep, I had that big time. My L breast (treated) was always hotter than my R during txt. They finally evened back out again about 2 weeks after RADs finished up. And now, the L breast is back to being hot again..... so weird. Anyway, hopefully yours doesn't increase and cause you too much irritation. Hang in there.

    Ghostie13 --> So sorry to hear about the infection, pain, and SEs going on! One thing after another! Uggh, I feel for ya! Keep us posted on what your RO decides to do about RADs. Do you feel that your skin needs the break and hope they give you a rest for a few days? If so, my fingers are crossed they do whatever you feel you need going forward. Sending extra cooling and comforting vibes!

    Journeyforward --> Here's hoping your sternum doesn't get worse! Hang in there - may your boosts go extra quick! When I started my boosts I was very worried that my skin/breast wouldn't tolerate the extra focus, since I already had such raw, angry, swollen skin. However, my boosts seemed to not aggravate anything all, to my surprise. Maybe you will have that kind of luck too. Keep us posted on how you're holding up as they progress.


    Lastly for everyone, here's something on Twitter that made me laugh. I hope ya'll will get the "joke" and smile and grin for a bit like I did. We can never have enough of that stuff, am I right? Awwwww furbabies and animals....the best of the world IMO!

    image


    Also, my own Maine Coon furbaby, Ari (Arianna - welsh for "silver") wants to say a very sleepy, very lazy, but oh so furry hello to you all! <3


    image

    Hugs and healing my friends!

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Spoonie, fingers and toes crossed that the rash is just a delayed reaction to rads. Your Maine coon is so beautiful and soft.

    I just got home from radiation 5/16. I really did not want to go back after the holiday break! I asked when I got there about rads and antibiotics, and the said it makes no difference at all. I took today off work bc I'm still congested from the bronchitis and sinusitis, and just felt overwhelmed by it all.

  • egregious
    egregious Member Posts: 240
    edited November 2018

    Hey DWiseley,

    Hope you're on the mend soon from your sinusitis and bronchitis. It's all too much on top of rads.

    ((gentle hug))

  • ghostie13
    ghostie13 Member Posts: 59
    edited November 2018

    Appointment with surgeon this morning and he drained a huge seroma. Doesn't look infected but treating me anyway, just in case.... appointment with radiologist this afternoon and she said if everything looks good on Wednesday we will starts rads then..

    Have to work the overnight shift tonight and I'm just beat.....

  • egregious
    egregious Member Posts: 240
    edited November 2018

    Fingers crossed for you, ghostie!

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Im glad you got that taken care of, Ghostie!

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    #20 today. Noticed some pinky-red stuff on my collarbone, and the nerve ouches are back - not constantly, but feels about like it did a week or so post-op. Three weeks to go. Glad I'm doing this in winter with higher necklines.

    I hope those of you with more serious skin issues get them resolved quickly.


  • rileycat
    rileycat Member Posts: 7
    edited November 2018

    I hope you’re doing better tonight, Ghostie. Feeling crappy is just....crappy!

    Spoony -Ari looks amazing! Such wonderful paws

    One treatment done. 19 to go. Life is good.

  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    For all ill fighting the winter season colds and those with radiation SE may u heal quickly. Im 8 done with 25 more to go makes me nervous. I dont get a break until xmas hopefully my skin will last thru the season.

  • journeyforward
    journeyforward Member Posts: 42
    edited November 2018

    Hi Everyone,

    I had my first boost radiation today - 17 treatments done. My skin is holding up as well as to be expected. The RO seen for the final time during rads and then I follow up in 6 months. I am really feeling very happy only 4 more days of this stuff.

  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    egregarious - yes, they also called it one of the “longer term side effects” lol. 😜

    ghostie - glad you at least have some answers and they drained the seroma! Get lots of sleep before you start the daily rads too, and lotion! #miaderm

    Journeyforward - congrats on almost being done! Did the boost feel any different?

    Urdrago - if it helps with the nerves, I’m 19 sessions in and still appear to be fine. It’s possible. Although I’m feeling under the weather too although that happened this weekend so I blame a back to back weekend and not radiation. Gonna try and get a decent amount of sleep tonight.

    Dwisely - hope you get a full night’s sleep tonight too and can recover soon!

    Spoonie - Ari looks SOooo sweet! So glad you have that little fireball companion.

    Alicebastab - I think we are on similar schedules - tomorrow is #20 for me.

    Rileycat - congrats on 1 done, you have 10 less sessions than me so prob will fly by.

    All ladies - here’s a funny thought. I get to work from home with the paw paws by my side while I go through treatment and, while I’m ready for the radiation and commute itself to be done, I’m also NOT ready for it to be done because then I don’t get to work from home anymore. So part of me wants these next 3 weeks to last. Is that nutty?

    I mean, when I go back to the office, I’m going to miss this looking at me while I work:

    image

  • rileycat
    rileycat Member Posts: 7
    edited November 2018

    woohoo!! Congrats!!

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Pebbles, I miss that looking at me all day, and their not even mine!

  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 89
    edited November 2018

    32/34 today! Only 2 more boosts to go and I am done. My boob is super tan now. The boosts are not burning me. No burn left. My armpit that was purple-red is deep tan. It looks so much better and the itching is gone. Leather feeling skin is gone. My sister and i whipped up some homemade body butter with baby lotion, vaseline, coconut oil, vitamin E. I have been using some of that along with my other lotions. I think that has helped with softening the skin.

    The fatigue was kicking my butt so I was very curious to see how 4 days off would help with that. By Sunday I felt so much more like myself I even had enough energy to go to church, cook dinner and put my christmas tree together! After two treatments the fatigue came back but I am optimistic after the treatments end my energy will be coming back fairly quickly. If I can handle the Arimidex that is but that's another thread. lol

    There is light at the end of this tunnel you guys. Your treatments are going to go faster than you imagine! I looked at my calendar with such dread thinking I would never get through all this...but it went by fast! Yours will too.

    Spoonie, I thought of you while cooking Thanksgiving dinner! I was afraid I didn't have enough spoons in my hand to finish the job. I love the spoon theory, thank you for sharing it. I hope your rash clears up and you start feeling better soon.

    Ghostie, hang in there. My Ro said the rads will remove any remaining fluids in the breast from the surgery. This was his explanation when I asked why my breast was so much smaller than the other untreated one.

    Urdrago, how about that snow? So pretty.

    Sending you all well wishes, comfy hugs and strength. My heart goes out to all of you who are struggling with the SEs. Be kind to yourselves and be sure to talk with your RN if you are not sure about anything.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    So, here's the update. Saw my RO today in regards to my "rash that is not a rash".

    Sadly, no resolution. Still remains a mystery.

    She was thoroughly puzzled and had no idea what I have going on. The "rash" is linear and symmetrical now between my breasts, up my chest, and down around my treated breast. It feels weird, like ropey and fibery (not itchy or painful or pus filled etc) as it spreads out vertically and horizontally Just sooo bizarre. All on the edge of the RADs field.

    Sort of stressful to hear what she said, "I have never seen this before so it's out of my league." :( I was hoping it was just something that needed antibiotics or steriods and it would be gone. Not my luck. Am being referred to a Dermatology Specialist whom I will see next Monday.

    At least my RO is awesome and spent time with me assuring me that it is most likely related to how RADs affected my other chronic illnesses, mainly my immune system oddities and my C.I.R.S. She did say, "it's not surprising that you're experiencing something I've never seen and that you'd be the one to end up with Radiation Fibrosis, since you already broke that mold a few times during your treatment for both myself and the staff."

    We both king of laughed and I said "I'm so glad I could make things interesting for you all!" . :) At any rate, guess we'll see what Derm says in a week. I'll see my RO again in 2 weeks for a check up on the Fibrosis and Breast Lymphadema.


    Rooting for the rest of you as you come down the final stretch for your own treatment. You'll have to let us know if you get a "diploma" from your team or if you get to ring a bell or something similar to celebrate the end of this particular journey!


    CarolAnnieLumpLump --> Awww I'm glad that The Spoon Theory was helpful to you and that you made it through Thanksgiving! It always makes my day to pass along that analogy to someone new. You never know how far it will reach through various people by just sharing once, let alone over the years. Sometimes that's all we need to feel like our own experience/pain/stress can someone help someone else in the future. Also, hey that's super good news you shared about your SEs fading a bit and the awesome homemade lotion you and our sister made. I'm sure that was a fun memory for the both of you and was a nice way for her to support you as well. Love it! And hey, you are almost done! Woohoo!


    JourneyForward --> Only 4 more boosts to go, the final stretch! Yay. Do you have anything planned to celebrate the end of RADs?


  • journeyforward
    journeyforward Member Posts: 42
    edited November 2018

    Hi Pebbles - Once again, thanks for the cute doggie pics .....................soooo cute!!

    The boosts feel no different and my skin has been doing well after that long 4 day rest break.

    Everyone -> Take good care :)

  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    Hi journeyforward - Good to know! I start the boost next week. One more cute doggie pic below!

    Spoonie - OMG this makes me want to research and see if we can solve this for you! I’m so sorry there’s no resolution, hopefully the dermatologist will know more. I don’t know if it’s a consideration at all but our Asian “miracle medicine” is Tiger Balm. It’s a heat/cool sensation and needs to be applied very carefully but when I had the surgery, I had lifted something heavy and it made my breast incision start to bleed and then although it was bleeding only very slightly it wouldn’t stop. The surgeon told me not to worry and I tried applying neosporin and it didn’t do anything, finally I decided to apply tiger balm one night and the next morning the bleeding had stopped. Anyways keep us posted and if i find any good references online I’ll let you know.

    CarolAnnie - congrats on 32 of 34! Woot you’re almost done! Nice to hear your skin has settled into a nice tan. That sounds like when people sunburn and it eventually settles into a nice tan, so hopefully that’s encouragement for anyone experiencing more of a burn / pinkness right now.

    Rileycat - thx! Hope it’s going well with your rads start!

    Dwisely - here’s one more, going home with me from today’s session. At the hospital the guy who checks us in calls Domino “the Domino effect” because she has a Domino effect of smiles when we walk in lol. Oddly it helps me not feel fatigued going in to treatment despite the long drive.

    image

  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Spoonie thank you for sharing.its been a struggle to explain bits and pieces to friends and family so the kind of understand.. Your an awesome writer!

  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    Spoonie - I found this article on radiation dermatitis. Not sure if it’s exactly what your experiencing but maybe worth a read? It does include 5 potential treatments and Lso mentions radiation fibrosis as one of the symptoms of radiation dermatitis:

    https://www.healthline.com/health/radiation-dermatitis

    On the treatments it said:

    1. Corticosteroid cream

    Topical steroid cream is often prescribed for radiation dermatitis, although clinical evidence is mixed concerning this treatment option.

    2. Antibiotics

    Oral and topical antibiotics have shown effectiveness in treating the burns associated with radiotherapy.

    3. Silver leaf nylon dressing

    Burns on the skin are typically treated with gauze. When it comes to radiation burns, though, studies show silver leaf nylon dressing is one of the best options available.

    This skin dressing is effective because of its antimicrobial and anti-infective properties. The silver ions used in the nylon dressing release into the skin and work quickly to relieve discomfort and improve recovery.

    It is also helpful for relieving symptoms of:

    4. Zinc

    The body uses zinc to promote immune function. It can be used topically to treat acne, burns, cuts and ulcers, in addition to X-ray dermatitis.

    While doctors haven't completely endorsed zinc as an effective treatment method, it has many benefits that can improve your skin. If taken orally, zinc is an effective treatment for ulcers and swelling.

    5. Amifostine

    Amifostine is a medicine that removes free radicals and reduces toxicity from radiation.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Thanks for the help Pebbles, I appreciate it, but unfortunately I think my RO would have spotted RADs dermatitis in a jiff and she said she's never seen this before. That's why I was so hopeful when I went to see her today that I would come out with antibiotics or a cream or steriods and be on my way to getting rid of this.

    Not that it's bothersome at all. I have no idea it's there unless I feel my skin or look at it. Doesn't hurt, isn't hot, isn't infected, isn't peeling, or itchy, scaly, or anything...it's just "there" in horizontal and vertical symmetrical lines, like a net spreading out from my midline of the chest. Bizzare.

    I've searched Google, the past few days, and the only thing I can find that looks close to it is the pictures for reticular erythematous mucinosis https://www.dermnetnz.org/topics/reticular-erythematous-mucinosis/ or of this picture from https://www.rheumatologyadvisor.com/hallmarks-of-systemic-lupus-erythematosus/slideshow/2946/ ..

    (fyi... these are not me, but picts from the above website of what looks similar ...ie mine is on the chest and on a smaller scale...to what I'm dealing with)

    image

    and/or ???

    image


    It's interesting to me that this can be brought on by exposure to UV radiation.....hmmm that sounds familiar, right? I also have a lot of the characteristics (med history/symptoms/etc) of Lupus but have never had the rash. Who knows. Maybe RADs pushed my body over the edge from Sero-Neg Rheumatoid Arthritis into full-blown Lupus or something akin to it.

    Just have to wait and see. Fingers crossed the Derm Specialist will know for sure what is going.

    LOL, if I end up having successfully diagnosed myself I'm going to tell my RO if she ever needs a Derm Consult to look me up! Ha!

    Thanks again for the offer to help Pebbles. I do really appreciate it.

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