Radiation burns with 2 days to go and mini rant.

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I am almost done.  2 more radiation treatments to go!  This past few days I've felt so good...2 days ago, I took my 16 month old daughter outside, and pulled her in the slide for almost an hour.  I thought, "This is great!" Yesterday morning, I get up, I take my daughter to the mall, and we walk around window shopping for 2 hours.  I wore my compression sleeve for this time.  A little time later, My arm feels really swollen, and near my arm pit, feels like it's burning/chafing kind of feeling....I go take off the compression sleeve, and my bra, and the area is bright red...very burned looking, very sore to the touch...I have not been wearing a bra, or compression sleeve since.  Sleeping was hard.  I guess I'm a victim of radiation burns after all?  Maybe My arm is bothering me, from pulling my daughter in a slide, (arm was downward) for an hour?  UGH.  This is so frustrating...I finally have the energy to do a little bit of exercise, and this happens???  Will I ever be able to lift weights again...will I ever be able to tone up my upper body?  Tips? Suggestions? Words of encouragement? I hope it's ok I posted this here...I guess it's not all radiation related? Thanks!

Comments

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited January 2011

    Having been there, done that with radiation, I hear you on the frustration.  But for what its worth, it is not uncommon to get a bit of burning/blistering at the very end--I had the same thing.  As I see it, I was luckier than some people who are in misery from the first day.  Make sure you put some burn treatment on the burns and I think its a great idea to ditch the bra--I didn't wear one during all of radiation and I think the access to air helped.

    I am seven months out of radiation and to a certain degree, I am still recovering.  I ended up with radiation pneumonitis and now I find I just don't have the stamina that I used to have---I get winded walking up the hill to the bus.  It scares the beejesus out of me mostly because I am turning 50 this year and it feels like its going to be downhill from here.  This is not what I wanted for my life---my elderly role model is a childhood friend's 75 year old mother who is in the middle of a gig with the Peace Corp in Africa, not my own mother who spends most of any phone call discussing bodily failures. 

    I have decided to refuse to accept it.  I am making myself walk more and walk faster.  I signed up for my first yoga class.  I am getting my dreadful bike swapped for one that doesn't send me over the handlebars when I brake so I am ready to bike to work in the spring and so on those nice days, I can get my boys to go for a bike ride with me.

    Kellie, you will get through this.  At times it may feel like one step forward two steps back but it won't always be that way if you don't let it.  Hang in there and happy new year.

  • Arayasunshine69
    Arayasunshine69 Member Posts: 50
    edited January 2011

    Thank You 3Monstmama!  I want to stay active too!  I even rejoined weightwatchers online last week, and this week, I'm down 6 lbs.  Yay Me!  I am really trying hard, to not think about cancer all of the time, and to appreciate each day, and do what I can that day, one day at a time.  I am 35 years old, but my body feels much older than that.  I see 70 year olds (and older) running, and that's what I want for me too!  I want to feel fit.  I want to be that healthy.  I plan to do some kind of physical activity everyday.  I'm still a new mom...I don't want her to see me as unfit, and having constant bad days where it hurts to move...I would rather her think of me as a "fit role model."

     Happy New Year to you too. =)

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited January 2011

    Hang in there, Kellie. I was in your shoes last April and man did I turn lobster red in that last week -- was doing so so well for the first 20 zaps and then ouchy (I had 25 full and then 5 boosts)!  But you are in the homestretch now and no one can take that away from you. Please don't be surprised if it actually gets a little worse in the week after you are done, I recall it taking about 2 weeks post treatments before I really felt like it was looking good.

    It's been nearly 9 months since my zaps ended and I can barely see anything, really have to look to see the tan rectangular area, and you'll be there, too.  Congrats. on being D.O.N.E. this week!!!!!!!!

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Kellie,

    One other thing to consider--and this is the pits and it will get better--is with lymphedema (and you have a compression sleeve, so I figured there's some there) you are predisposed to sudden skin infections, called cellulitis. They can get bad quickly, so if it's red and sore and hot and if you feel feverish, please call one of your doctors, and at the very least, show it to the rad onc immediately tomorrow. Often rad onc's don't "do medicine"--but they've got to recognize a skin infection---especially if it's not in the radiation field.

    I don't want to scare you, but I don't want this to get missed because it can be very serious, and can make lymphedema worse.

    Hope it's just radiation skin reaction--but you can't be too careful

    Kira

    Here's a link to cellulitis and lymphedema

    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm#CELLULITIS_%28INFECTION%29

    CELLULITIS (INFECTION)

    If you have been treated for breast cancer, your hand, arm, underarm, breast/chest, and back on the affected side are at risk for developing lymphedema. Any area at risk for lymphedema is also at risk for serious and potentially life-threatening infection.

    That's why any symptom of infection needs to be treated as an emergency.

    Get medical attention immediately -

    DO NOT WAIT!

    The most common form of lymphedema-related infection is cellulitis. Here are some signs of cellulitis to keep in mind:

    *

    Warmth or tenderness when you touch your skin
    *

    Fever
    *

    Chills or general achiness
    *

    Pain
    *

    Itching
    *

    New or sudden swelling
    *

    Solid or splotchy areas of redness, or streaky red lines
    *

    Rash

    Get medical attention immediately -

    DO NOT WAIT!

    Infection may follow any break in the skin of the affected area, even breaks that seem trivial or unlikely, such as:

    *

    insect bites
    *

    hang nails
    *

    paper cuts
    *

    pin pricks
    *

    minor burns
    *

    scratches
    *

    blood tests, IVs, injections, draining of seromas

    But infections may also occur even when you can't identify any specific cause.

    Get medical attention immediately -

    DO NOT WAIT!

    Lymph fluid may stagnate in at-risk tissues even before a diagnosis of lymphedema is made. It is warm and protein-rich - a virtual feast for infection-causing bacteria. Once infection starts, it can spread rapidly throughout the affected area and beyond, threatening systemic involvement.

    Early treatment of any infection with antibiotics will stop it from spreading, hasten your recovery, and protect the lymph system from further damage. If oral antibiotics are not quickly effective, your doctor may admit you to the hospital for a course of IV antibiotics.

    Get medical attention immediately -

    DO NOT WAIT!

    Even if you recognize the symptoms of infection and understand the reasons for quick action, it can still be easy to ignore an impending problem or deny its seriousness. Here are some of the excuses you may be tempted to use to delay seeking medical help:

    *

    This can't be happening to me - I've been taking good care of my lymphedema.
    *

    If I call my doctor and tell him I think I have an infection from a paper cut, he's going to think I'm a nut/wimp/hypochondriac.
    *

    I'm sick of doctors and hospitals!
    *

    It's after hours and I'll have to go to the emergency room - who wants to wait five hours to be seen?!
    *

    Nobody in the emergency room will know what to do about lymphedema anyway.

    *

    No point panicking - it's more sensible to watch and wait.
    *

    I'll just try some Tylenol first and call the doctor in the morning.
    *

    Who ever heard of a hangnail causing an infection anyway!

    Get medical attention immediately -

    DO NOT WAIT!

    Here are some tips for dealing positively with the danger of cellulitis infection:

    1.

    Prevent infection by following safe practices, including protecting yourself from cuts, pet scratches, insect bites, burns (including sunburn) and dry skin.
    2.

    Carry antiseptic wipes, antibiotic ointment and band aids with you, and use them promptly for any skin break.
    3.

    Talk to your doctor about keeping a supply of antibiotics on hand. Discuss guidelines for using them when a doctor is not available or an emergency-room wait may be too long.
    4.

    If you suspect that an infection is developing, remove all compression garments or bandages and do not perform any self-massage. Compression and massage promote lymph flow and can contribute to the spread of the infection.
    5.

    If you notice reddened areas on your skin, outline them with a permanent marker so you and your doctor can recognize progression or improvement over time.
    6.

    At the emergency room or critical care, speak up promptly about your lymphedema or risk of lymphedema, and be prepared to remind the staff about your risk of cellulitis.
    7.

    Be prepared for quick action. Have a small bag already packed to take you with you to the emergency room, with everything you'll need in case you're admitted to the hospital, including:

    *

    an up-dated medical history, including diagnoses, surgeries, hospitalizations (with dates), and current medications and supplements (with dosages)
    *

    up-to-date articles about cellulitis (Printer Friendly Version here) to share with your health-care providers
    *

    the names and phone numbers of all your doctors and your lymphedema therapist (and friends too, of course)
    *

    a notebook and pen
    *

    any LE alert bracelets or arm bands you might have
    *

    a bathrobe and comfortable non-slip slippers
    *

    toothbrush, toothpaste, comb, brush, shampoo, and whatever other daily care items will make you comfortable
    *

    a good book or two or a crossword puzzle book and a sharpened pencil
    *

    and a treat - a few packets of cocoa mix to add to hot water, for instance

    Follow your doctor's instructions for when to resume compression bandaging and self-massage for lymphedema. Usually that will be 24 hours after the start of antibiotic therapy if the infection is clearing and there is no pain. If you are allowed to resume massage before all redness is gone, avoid massaging over any reddened area. The infection will likely leave you with a lot of swelling. It may be helpful to make an appointment with your lymphedema therapist for a consultation or extra treatment as soon as the infection is under control.

  • MVRobbins
    MVRobbins Member Posts: 4
    edited February 2011

    Thank you 3Monstmama for your battle cry.  I finished my radiation 01/18/2011. I felt terrific.  Almost back to 100%.  I was thinking, "Wow!  I made it!  Now I'm cruising!"  Well, just 2 weeks later a dry cough and tightness in the lungs appeared. I figured it was just the start of a chest cold and I started a regimen of the typical over the counter meds.  I didn't develop any other cold symptoms like runny nose, congestion, or achiness.  Just this continued tightness, and it was becoming harder to breath deeply - especially exhaling.  Nothing I did was making any change in my condition so yesterday I decided to call in the pros before the start of the weekend.  I stopped at our neighborhood walk-in clinic on the way home from work. (Remember, at this point, I'm not connecting the dots.  I'm still thinking that this is just some stubbon type of cold or bronchitis that normal people get.)  I got there at 7:30pm and they close at 8:00pm. They did an EKG (normal), Blood Ox by finger (98), temp (normal), blood pressure 140/80 (my normal is more like 115/70).  Doc didn't hear anything in the lungs but opted to do a chest xRay.  He thinks it shows some pnemonia in the right lung (won't be read by a radiologist until Monday).  He prescribes predisone and antibiotics and instructs me to follow up with my doctor who I will see on Monday while I'm getting my herceptin therapy.  Today I called my sister, who happens to be an ER nurse for 35 years, and told her about the diagnosis.  It was she who gave me the words Radiation Pneumonitis - first I heard of it.  Now I feel like such a dope.  My radiation was to the entire right breast area.  Is my inability to connect the dots a form of denial?  I don't want to be that patient who every time I get a boo-boo immediately jumps to cancer.  Even cancer survivors can get run-of-the-mill colds.  Anyway, after doing some research this evening and getting a better understanding of the symptoms I think she's right.  The good news is that the clinic's ER Doc ending up prescribing the same drugs needed.  It just looks like the dose will have to be higher and last longer.  I'll call my Radiation Oncologist first thing Monday morning and we'll get on the war path.  So maybe the finish line is a little further away than I thought but I'm taking 3Monstmama's approach.  I won't accept these things that lower my quality of life.  I'll walk farther, I'll walk faster, and I'll show you Big C - that I can't be beat!

  • MinstrelMM3
    MinstrelMM3 Member Posts: 5
    edited February 2011

    My own radiation hasn't started yet; I will get back to you (lumpectomy with SNB). My aunt (mastectomy in 1966) told her daughters that she found radiation relaxing. It's all so varied. But she lived another happy 35 years, with no cancer recurrence, and it's helping me to think in terms of years ahead. This week is hard. Next year should be better. Best wishes.

  • MVRobbins
    MVRobbins Member Posts: 4
    edited February 2011

    MinstrelIMM3.  I was experiencing some anger for the first time during my cancer process when I was about to start radiation.  After all, I had the bilateral mastecomy, chemo, and was finally starting to feel like my old self.  Now you want to do radiation! What was there to radiate! And I have to go every day!  Well, my RO explained all the stats. My tumors were large (over 5cm), aggressive, and I had lymph node involvement.  I stood to gain alot in terms of recurrence risk with radiation treatment.  I had DCIS in my left breast in 2007 (lumpectomy & mammosite internal radiation) and IDC in the right 3 years later.  My stats are something like 25% chance of recurrence based on my BC history and that could be lowered to 5% with treatment.  Those are really good odds - and worth the side effects in my book.  I had a good experience during my 28 treatments.  The staff was wonderful, knowledgable, and caring.  They gave me progressively stronger creams to keep me comfortable - BEFORE issues developed. They gave me Biafine (Rx) emulsion cream on day one. About 2 weeks in they mixed together a batch of Biafine, Aquaphor, Hydrocortizone, and Lidacain. The final week they substituted the Biafine for Silverdine (burn cream Rx) in the concoction. I did not have any significant pain, and healed very well. I did not have any fatigue either. I continued to work through the whole process and the daily visit just became part of my routine.  Bottom line: I vented for a couple of days when I realized I had yet another detour to go through in my path to recovery.  I prepared for the worse and was pleasantly surprised when it didn't come to be.  Cancer had taken so much from me already (time & hair Smile).  I refused to let it rob me of anything else.  I wasn't giving it my smile or my sense of humor. Maybe these detours are the scenic route (sure met alot of incredible people and learned alot about myself) and I'll just open the windows wide and enjoy the view.

    I hope your radiation goes smoothly.  Just when you think you can't possible continue - it's over.  Hang in there and good luck.

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