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A rad onc weighs in on radiation "burns"

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Comments

  • MsW2012
    MsW2012 Member Posts: 36
    edited July 2013

    Celineflower, I feel you! It's awful what we have to go through. Yet it is possible to power through, as you have done so far. There are things you can do to minimize side effects. I feel like the best thing was to use the creams or lotions faithfully to protect your skin. Coming here is great too! We are in your pocket, cheering you on.

    It was great to be finished with chemo, and even better when I finished rads, because the whole journey is that much closer to the end. Enjoy your weekend. You will be in my thoughts and prayers.

  • CelineFlower
    CelineFlower Member Posts: 145
    edited July 2013

    thank you ms W

    got the call..

    i start on tuesday...

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited July 2013

    Celineflower - I read somewhere, probably here, that being brave isn't a choice, being brave is what we do when we have no choice. Radiation definitely caused me many tears - hated laying there with tears streaming down my face and not being able to move to wipe them away. Strength to you my fellow warrior! This too shall end and bring sunnier days ahead!

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013
    Thanks Cindy, I am hydrating for sure! about a gallon a day, I am sloshing. And using my lotion by day and emu oil by night! (my appointments are late afternoon, so I slather on the oil right after my appointment). all of these tips I learned from you wonderful warriors who have been through rads before me (NOT from my medical team). so thank you!!!




    Celine, I feel for you- I was, and still am, more terrified of radiation than of chemo or either of my surgeries- or those to come. I think I overterrified myself, if that makes any sense?? I was dwelling on all the bad things that can happen, skin breakdown etc, but now I am focusing on that wonderful laser beam killing all my residual cancer stem cells and they will not DARE to come back!


    But I know that our regular skin WILL come back. Slowly. The skin stem cells from the good areas come in from the sides to heal the wound. From the clean areas that did NOT have cancer.


    I am scared too, but I get it-and we can DO this!!!! I will be getting my eighth dose on Tuesday when you start and will be thinking about you.


    Bayoubabe I am sorry for your tears on the table. Are you done now I hope??


    Thank you everyone for the discussion. We also had some success stories on a post I started when freaking out in the middle of the night, "did anyone come through rads with skin okay?" I got some comforting feedback that really helped me. I will bump it up for you Celine.


    Hugs to all

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited July 2013

    Sciencegal - yes, I am finished with radiation. Most of my tears were for my kids, not from pain from rads. My mom died from cancer about 7 years ago, and I would lie on the table and would be overcome with grief over missing her and fear of doing the same to my kids, but at a much younger age.



    My most frustrating rads story - I was set to finish rads on a Friday. Got a call about an hour before I was ready to leave that the machine broke down and I would need to wait until Monday to finish. My kids and friends had a celebration planned and couldn't understand why I couldn't still celebrate. (It ain't over, till it's over). I cried all weekend. So glad I am done!



    My skin has healed well. Just a little "tan" under my arm and on side. Healed well enough that my plastic surgeon is doing my exchange next month instead of waiting a full six months. So excited and yet so extremely nervous!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Hi y'all



    CelineFlower - we will be in your pocket (((squeeze))) yes, a long roller coster ride, but your ride is almost over warrior.

    You will do well in rads. Prep your skin, hydrate, eat well, rest, walk, and free boobing!

    And ask questions...your rad team wants all to go well. I was up front with then on my rad fears.

    My biggest fears

    1. Pain, but rads did not hurt. You will be on table a short time and beam goes fast 30-45sec so zap break zap break...off you go:)

    2. Panic on table and not able to stop, but they assured me and showed me the OFF BEAM button and backup and speakers. ( I did wish my mommy could be there to tell me it would be ok)

    3. Skin break down, but my skin care, hydrating, eating extra protein, and rest helped. I did make my rad team check out my skin on going and used hydrocortisone and emu oil as recommended. Also free boobing...no clothing...just air.

    Overall, I did well my fears did not happen. I did mediation to calm my mind and then took funny stickers to lighten the mood. My rad team rocked.



    Hang in there...Tuesday share your fears and concerns. Somehow sharing with your team helps.

    Have a great weekend...you will be fine!



    Hey Elizabeth:)))



    Happy Weekend laser tag warriors!

    Cindy

  • susaninicking
    susaninicking Member Posts: 121
    edited July 2013

    Helpful. Thanks.

  • slv58
    slv58 Member Posts: 486
    edited July 2013

    One down 32 to go! I kept trying to "make nice " with the machine circleing around my chest, but couldn't.... yet. I know it is necessary for my health but it just seems so unhealthy. It's funny how many of us have a hard time with rads, and not so much with chemo. I'm so tired, it was over two hours driving down, 45 minutes on the table and 2 1/2 hours home during rush hour. Not to bitc# too much but I dive an old standard with no air and yesterday my big toe nail fell off ! ouch -Thanks chemo-lol. It's in my when I asked the tech about lotions, she said the same as RO, in scented lubriderm or glaxal. I asked what happens if I start itching (which is my usual skin reaction) and she said I could use a little hydrocortisone cream and that's it! Well as soon as I was finished I lathered my "illegal" emu oil all over my assaulted girl! What they don't know won't hurt them. Thank you everyone for suh good advice.

  • MsW2012
    MsW2012 Member Posts: 36
    edited July 2013

    Bayoubabe, my plastic surgeon also wants to do my swap earlier than the std 6 mos after rads. Makes me a bit nervous but I will discuss it with him. It's great but don't want complications later, right? It's all about inflammation. So sorry about the machine breakdown. That happened to me too but luckily not on my last day. No fair!!!



    Slv68, my techs & RO said 1% hydrocortisone cream is fine. When that stopped helping the RO prescribed another cream. Can't find the name right now but if u r interested I will find out the name.

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited July 2013

    MsW2012 - what is the reason for your surgeon wanting to do the swap earlier? I am so anxious to be done with TE, but, like you said, don't want complications. Ugh! If only there was an easy way to make this difficult decision. You would think we would all be pros at decision making by now!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Slv58 - yippee 1/33! You did it:). The first week I think there is anxiety...unknown. Then our mind begins to calm down we breath our rad techs make us feel secure and we just put our heads down and press on...jump on the table and get it done leek good laser tag warriors.

    Sorry that you have such a long drive...doesn't let your mind calm down.

    Are you able to find a driver(s) to share the ride. Another warrior did and it was a cool experience with different drivers each day:)

    I applied the 1% hydrocortisone first then emu oil after 14/33 RO gave be 2.5% hydrocortisone which I used for 3-4 weeks post rads.

    Apply some emu oil on your back too...the heat radiates so take caution. I never ad problems, but some did develop rash/tan on back...good to know.

    Healing Light...breath...so hum mantra...I am!

    You will rock rads!

  • slv58
    slv58 Member Posts: 486
    edited July 2013

    Thanks RMlulu, I know I will get though this, it's just right now, I'm not liking it! I'm not really sure why I feel rads is doing more damage, I mean chemo does damage as well, but for some reason I welcomed it and just knew in my heart it was needed. Maybe with time I will come around, I'm just nervous about getting heart damage or cancer from rads down the road. Apparently neither shows up right away, so it's almost like another unknown looming in the future.

  • MsW2012
    MsW2012 Member Posts: 36
    edited July 2013

    Bayoubabe, I was really disappointed when the RO and MO said the wait wd be 6 mos after end of rads. When I asked the PS he said no, we cd do it sooner. I am sure it depends on what your tissues look and feel like, plus the whole anatomy of the original surgery. Maybe 6 mos is the max. I will see my PS next week and ask him about it.

    Slv58 yes like RMlulu said, lube your back too, because x-radiation goes all the way through your body. They should be able to give you a "skin rendering" that shows exactly where your skin will be affected, front and back.

    Also they might have a way that you can bring your own music to be played during treatment. I brought Mozart, very soothing. As for long term effects, the RO can explain the risks vs benefit and you have the right to do it or not. I imagine it as sterilizing the tissue, rendering it useless to the cancer. I don't understand how it can increase cancer risk tho, I just accept that it does. But don't ever hesitate to ask questions and express your concerns. It's your body and your life! Sending calming, healing thoughts your way. Hugs!

  • rvaburned
    rvaburned Member Posts: 1
    edited July 2013

    Thanks to the RO for the great info.  Wish I'd found this before my treatment.  Had mx with 3 of 9 lymph nodes involved.  Finished 25 radiation treatments on right side.  (Called it the "4 way stop"  - 4 blasts each day to stop the cancer).  First blast was lengthwise on right chest; 2nd was a narrower crosswise band; 3rd was to back shoulder area to zap any cancer cells in the lymph system "drain field"; 4th was to underarm area.  Used bolus for 1st, 2nd and 4th to keep radiation at skin surface not penetrating to any organs.  Boost was along incision line, but after 2 boost, had to stop.  Had unusual spread of radiation dermatitis down arm and up neck to face with lots of itching.  Now taking steroids to clear it up.

    Appreciated the description in another blog describing the "burned" area as "weeping" magenta red and very very sore.  Am very fair skin - and sunburn easily.  Started Miaderm two days before treatment.  Skin turned pink and bumpy by day 3.  Upped the Miaderm from 2X a day to 3X a day.  RO recommended lots of air to the skin.  Able to work from home so have spent 6 weeks with fans blowing constantly on skin.  Did well until treatment #21.  By then band across chest very red and itching.  1% hydrocortisone cream helped.  Underarm very red and painful.  9 days after treatment #25, areas of skin still sloughing off, under it is "weeping" magenta red and very tender. RO gave Carrasyn burn cream - but it, like Miaderm, really burns.  Aquaphor has helped relieve the tightness.  Having so much "gooey" drainage may call dr tomorrow to see if that's "normal".  May go looking for hydrogel pads too!  Thanks all for sharing.

    Saw Dermarad mentioned online - product out of OK.  If the pictures and testimonials are accurate I would encourage any fairskinned person to use that and not Miaderm.  Miaderm certainly didn't help "prevent" redness, severe "burning" or radiation  dermatitis for me.  But since I knew I could get a bad "burn" I was hesitant to use anything but the product the RO recommended...  really wish I'd had the courage to try Dermarad!

    Radiation

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013

    Gosh I am SO sorry you are going through this. I sure hope they can help you when you call them. OUCH!



    very gentle hugs

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Bump for summer rads.



    Read before tanning...might change thoughts on how rads work

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013

    Thank you- I agree, for the person who asked if tanning before rads might help- I think not- my RO said absolutely stay out of the sun and so I wear a black T shirt any time I am outside right now.

    There will be enough time for sunshine later.

    Thanks for the bump!

  • Lily55
    Lily55 Member Posts: 1,748
    edited July 2013

    I did not realise that rads lowers your white cell count for several months afterwards....anyone know why? If i had known i would have refused rads

  • MsW2012
    MsW2012 Member Posts: 36
    edited July 2013

    I will be very interested to hear the answed on that. One month after chemo, my wbc's had been coming up nicely. Then two wks into rads they started dropping again. My rad onc said it was not from rad. Then I thought it might be the Neulasta having taxed my bone marrow too much during chemo so I called their number. They were very concerned and called my med onc. Then she said I sd have told them I was in radiation. I trusted the rad onc so I didnt mention it. Now the med onc says radiation definitely lowers wbc's because it radiates through bone, in my case some ribs. So what's the scoop?

  • adagio
    adagio Member Posts: 713
    edited July 2013

    Great question on the white cell count. I had a blood test done about 2 months after my rads ended and they were within the normal range - however - a bit on the low side of normal which I wasn't happy about, but the MO seemed just fine with it. 

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013

    My white blood cell and red cell counts have both dropped during rads. Platelets and grans hadnt recovered yet since chemo and are still low. My docs said it is expected.



    I dont know if it is damage to the bone marrow in the field (although your ribs dont have a ton of marrow the sternum does) or that we are continually mobilizing cells to try to treat the damage.



    As a cell biologist the latter makes more sense to me but I dont know for sure. I just keep eating protein and vitamins to replenish the cells that are lost or damaged!



    14/25

  • rmlulu
    rmlulu Member Posts: 1,501
    edited July 2013

    Hi Radies



    Interesting...I like concept of cells mobilizing to repair replace rebuild radiated tissue...RO said to increase protein and focus on good diet during rads which I did:)...organic Greek yogurt, fresh pineapple, kiwi, salmon, spinach, broccoli...and organic protein bars.

    Fuel for battle!



    Congrats Sciencegal on 14/25...only 10 more yippee! Zip Zap almost done.

  • sciencegal
    sciencegal Member Posts: 546
    edited July 2013

    I just noticed that you wrote "hi Radies" instead of ladies- LOL! Love it.



    Yep, getting through one day at a time. I am trying to do tons of protein as well, it is a good excuse to eat anyway!



    15/25

  • rmlulu
    rmlulu Member Posts: 1,501
    edited August 2013

    Hey Radies!



    This intro is so informative for 2013 Summer/Fall Rads!



    Hobbesal46 this is for you...and TeamKim, MichelleAZ, and others



    Zip Zap laser tag warriors

  • rmlulu
    rmlulu Member Posts: 1,501
    edited August 2013

    Bump!



    2013 Fall Rads this is for you! Laser Tag Warriors:)

  • bjham
    bjham Member Posts: 6
    edited August 2013

    All very helpful and interesting.  I've had 11 out of 30 and am itching a lot.  Cancer Center recommended Aquaphor which I am slathering on twice a day.  I use the time on the table to pray and it seems to go by quickly.  I told a tech I hadn't finished my prayer list and they'd have to leave me there longer - lol.  I am feeling tired but that may be psychological.  But I'm going to my 50th high school reunion this weekend and I intend to put this out of my mind and dance and have a great time.  Thanks to all of you for your encouragement.  Good luck to all.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited August 2013

    Hi bjh - congrats on 11/30! About 1/2 through my RO added 2.5% hydrocortisone with emu oil and it so helped sooth the rad rash and itch :) sometimes I would skater on a top selling coat of aquaphor

    This thread intro helped me understand rads.

    Yes, healing light...glad your time is going fast...very mental, but healing light.

    Enjoy your HS reunion:). Dance and laugh! Your doing great warrior!

  • Kat-ski
    Kat-ski Member Posts: 63
    edited September 2013

    Ok, not sure where to put this.  I finished 28 rads to right side at the end of March.  I also have a bi-lateral mastectomy(aug2012).  I will do reconstruction next year.  I notice my right side has what looks like a huge sunburn panel from the top of the right chest down to the bottom line of the breast area.  It does not itch but rads are over with and now this skin sunburn looking panel.  Anyone with any ideas?

  • J_J_
    J_J_ Member Posts: 3
    edited September 2013

    Hello all...I'm a major newbie on the site...( Also took me several days here and there to read through all 12 pages! ) The initial post makes for an interesting topic.
    I was given a pamphlet ( one of many, even printers can profit from this!) that said I would feel nothing at all. I felt pangs almost right away, across my chest and later under the treated breast. I have a high pain threshhold, so when I asked about it, was told that it is normal...so, wasted pamphlet?? I also didn't cream my back until it was too late, as I had no idea I needed to until the bumps and itchiness began.

    I surely do "feel" burned right now, 25/30, and having trouble sleeping with this pain I am not supposed to have.
     That comment because I saw my rad onc for the first time since I started Rads and you know what he said
    when told the skin breakdown was so painful I can't sleep?...Oh, I have seen a whole lot worse than you! I think it actually looks worse than it feels...!!! What ???? I said, no, it hurts even worse than it looks!

     The crew in radiology are fantastic people though, so they keep me cheery.... but I wish total care could be staffed with some who have been through the process, not just treating it...I am pretty sure there would be more accuracy of info.   J_J_

  • rmlulu
    rmlulu Member Posts: 1,501
    edited September 2013

    JJ - so sorry that rads have been so difficult :( congrats on 25/30...the boosts are a great relief and break for the breast. I asked my rad team to mark the boost area so I could give extra love there.

    We are each so different...I was very fortunate skin did well...others have break downs...always in heighten alert during rads...protecting the girl. Think the best thing was hydrating and free boobing...just cami with the girl out and air :) clothing just rubbed her the wrong way. Keep up the skin care after rads...my girl just did a major 2 week peel Jo and I'm 4 mo post rads...no sun no pool...just skin peeling ugh!

    Scars look good and I'm so glad to be done and on HT for prevention.

    Counting down to your Happy Dance Ooo who :)

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