Fall 2013 Rads

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Comments

  • wyo
    wyo Member Posts: 541
    edited December 2013

    well one good study deserves another and I would respectfully disagree that "most ppl don't have problems with lymphedema maybe 10%"  The studies I have read frequently cite  that 1 in 5 women with breast cancer will develop lymphedema in their lifetime. If that one person is you that makes it 100% for you.  What I read on this sight and others has shown me that this little-understood problem significantly affects quality of life for many.  Bottom line- being evaluated and taking appropriate preventative measures does not seem to have a downside in my opinion. 

    http://www.stepup-speakout.org/Controversial%20Studies%20on%20Compression%20Garments%20when%20Flying.htm

  • batcatlady19
    batcatlady19 Member Posts: 138
    edited December 2013

    Wyo - at best, the studies cited on that page find "There was no significant difference in lymphoedema rates for fliers and non-fliers." Life is full of risks. Take reasonable precautions, of course, but no need to worry about every little thing :)  I've set foot on all 7 continents including Antarctica, & I'm not letting compression garments get in the way of doing it again (it'd be hell on such a long flight anyway!).

  • McKatherine
    McKatherine Member Posts: 300
    edited December 2013

    hello all you radiant ones!  

    Rainyday - my worst fatigue was about three weeks after I finished rads.   That was right when I started Tamoxifen, too though - so who knows how much was attributed to which cause!  

    Shalimar - I, too, was told to just breathe normally during my treatment - that the machine accounted for that.   I guess I might have been more paranoid about that, but my RO took forever getting my plan ready because she kept switching things to get the angles she needed without hitting my heart or lungs (and we also had to drain my right tissue expander because it was in the way).  FWIW - I saw my allergy /asthma doctor a few weeks ago, and he was amazed at how good my pulmonary function was.   He said its common for people to have some airway damage for the radiation, but that my lungs were great! (Actually, his exact words were, "you really dodged a bullet there". )  So it can be done!  

    I had my follow-up with my RO this week, and I don't have to see her for a year!  That's so bizarre to think about after being there every day . . . 

    Oh, and I finished re expansion with my plastic surgeon, and scheduled my exchange surgery for April.    :)

  • bondsy
    bondsy Member Posts: 94
    edited December 2013

    (I'm in the new Winter Rads group, but thought I'd also post this here since you are all more experienced than our new group and might have some helpful information:)

    I had my CT/simulation yesterday, and it went very well. I'll start rads
    on January 2nd. I was surprised to hear from the RO that I'll be having
    both my lumpectomy site and my axillary lymph nodes radiated. I didn't
    realize I'd have the nodes zapped. He said it's because I only had two
    sentinal nodes biopsied and one had cancer cells, so he wants to
    radiated the other nodes that weren't removed in case there is cancer in
    them. Anyone else having their nodes radiated too? Will this increase
    my chances of getting lymphedema or cause any fibrosis type issues?

  • LisaSp
    LisaSp Member Posts: 253
    edited December 2013

    Bondsy: I have no idea if my nodes were radiated. My left underarm was, so do I assume they were? In any case, I do know that node irritation will increase lymphedema risk, as will surgery and chemo. As far as your particular risk, best to check with your docs. I am going to check in with a PT specialist on this, as well as exercises to help with risk reduction.

    So here I am, a week out and so damned fatigued. It seems I can't get rid of it. Does it pass? I haven't even started tamoxifen yet. Grouch, gripe, complain. ThumbsDown

  • Bounce
    Bounce Member Posts: 574
    edited December 2013

    Hi LisaSp - Sorry to hear you are still tired.

    My family finally got together for my post rads celebration on Thursday night - almost 2 weeks since I finished.  We went to a lovely restaurant and although I didn't get plastered as I once threatened to do I did have a drink and an amazing dessert.  The greatest part was being together with my family and seeing how happy they were that this is all behind me (Tamoxifen still to come).  It was super to hear my kids say how happy they are to know I beat cancer.  They were both really affectionate and I had a wonderful evening.  I am not usually the party type but I really let myself enjoy the evening.

    I kind of felt that it was a good thing for me psychologically to have a celebration.

    So my mind is happy but my body hasn't quite caught up yet.

    My skin is much better but I am still not able to keep my bra on for most of the day.  I still feel swollen and sore.  I am less tired but occasionally still get completely pooped out.  And my sore back just refuses to feel better!

    I feel like I am trapped in a body forty years older than me!

    I guess I just have to take things slowly and let my body heal at its own pace.

    So LisaSp - all I can say is that you did chemo as well!  I am sure it will take more than a week to recover from the fatigue.  Don't push yourself too hard.  I worked really hard on Friday and today I was exhausted.  This coming week I am going to try and pace myself better.

    I am also going back to drinking more veggie juice this coming week and see if that doesn't help a bit.

    I am sure the young lady who works at the juice bar has missed me.  She used to ask me "Do you really like this stuff?" every time I arrived with my own parsley and coriander to add to the mixture!

  • Rainyday2013
    Rainyday2013 Member Posts: 20
    edited December 2013
    Hi Lisasp... You and I finished on the same day. I got hit by fatigue a couple of days later. I was pretty good up until that point. I ended up having 7 boosts. I can imagine that it would be harder for you since you also had chemo prior. You didn't have time to recoup. But you know, the good thing is, we are DONE!!! We WILL get better and the time will come that we can feel good again.
    Bounce..You deserve to celebrate! This was a big one and you did it girl!!! Let's pat ourselves on the back a little because it took a lot. I am dreading taking the pill come January 1, but let's hope and pray that the side effects will be few for us.
  • KatiAK
    KatiAK Member Posts: 138
    edited December 2013

    Bounce ... I am 3 1/2 weeks post radiation and I think my sore back got worse before it started getting better. I still have some days when I wonder if it is getting better.  Then I remind myself that a couple weeks ago I was gritting my teeth and alternating Advil and Tylenol.  I talked to my MO and he said cut yourself some slack. If you have pain meds take some and remember however long your treatment took is the amount of time you should allow for a full recovery.  This is a very long road.  I also sneak in to a local physical therapist for a massage now and then. I think it helps. Get a referral from your MO if you need one.  They should give you anything you want right now if it makes your life a little easier.

  • LisaSp
    LisaSp Member Posts: 253
    edited December 2013

    KatiAK: Thank you for letting us know what your MO said. I've started to have lower back pain too. Just annoying. But we all have to understand our bodies are struggling to keep up with overcoming these treatment related SEs.

    True, Bounce and Rainyday, I had chemo and all the meds to ease bad SEs (which have their own SEs ..huh). You're right to remind me. You know though, I had a couple weeks break in between. Through most of rads, no SEs. My normal energy had almost returned, then ugh.  

    But you're right Rainyday we're done! What a Christmas present!

  • hobbesla4
    hobbesla4 Member Posts: 72
    edited December 2013

    Just checking in to see how everyone is doing this weekend.  We have 4 rads days this week and 4 next week, due to Christmas Day and New Year's Day.  I am scheduled to be completed with treatment on January 3rd and have appointments with my primary care physician and the MO during the beginning of January.  I am supposed to be beginning some type of treatment like Tamoxifen after the visit to the MO, I believe.  I have not seen the MO before now.

    My skin seems to be holding up relatively well.  To be honest, I have not been overly concerned about it since Thursday.  At the radiation center on Thursday after my treatment, another patient bumped into me, causing me to fall.  I landed on my face and was unable to get up initially due to the impact.  My nose bled for quite some time.  So now, my nose and mouth area is swollen and has abrasions and bruising.  Nothing is broken, but quite sore.

  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited December 2013

    Bondsy, I had the whole kit and caboodle radiated. Intramammary, axillary, and every other ary!

    • brachial lymph nodes (or "lateral", or "humeral")
    • pectoral axillary lymph nodes (or "anterior")
    • subscapular axillary lymph nodes (or "posterior")
    • central lymph nodes
    • apical lymph nodes (or "medial" or "subclavicular")

    They say you should see a lymphadema specialist to be evaluated and learn about massage and Range of Motion exercise. I'm not that good about wearing my sleeve, but I try to do my ROM exercise and some massage. 

    love your bulldog puppy pic!

    Oh Hobbesle4! You poor thing!

    Merry Christmas all!

  • Bounce
    Bounce Member Posts: 574
    edited December 2013

    Merry Christmas and Seasons Greetings.

    I hope everyone is safe and warm and healing and resting.

    Love and hugs

  • LisaSp
    LisaSp Member Posts: 253
    edited December 2013

    Hobbesla4: Gentle hugs for quick healing. So sorry to hear about the fall.

    Everyone, hope your Christmas is lovely and relaxing.

  • sloyd66
    sloyd66 Member Posts: 202
    edited December 2013

    Hi Ladies,

    Happy Holidays, Hope you all take this time and enjoy and relax until your next treatment! Today was day 2 of my radiation.. Not so bad, but both days they had a hard time finding one of my tats, that was a little annoying to me because that takes up more time then then the actual treatment. So today the tagged it with some strip to stay on even during showering until  it start loosing up and they change it. But they gave me a list of do's and don'ts and the creams, well all the creams I seen on here was not on my list. I was given Keri, Eucerin ( which this cream, the big bottle I seen Aluminum in it's ingredients but not on the smaller version of the cream. So I asked the dr today how can I use this and it has that in it, but not deodorant. She looked funny cause apparently she didn't know it had it in. When I showed her the lil cream I had of course that didn't show it in the ingredients, so I need to bring it to them on Thursday so they can see this). The other cream was Aquarphor. So my question have anyone used any of these creams, and if so how well did it work?

  • KR13
    KR13 Member Posts: 13
    edited December 2013

    sloyd66,

    I have four treatments left and am on the boost portion of my treatment. I have used Aquaphor the entire time, I don't really like it because it is like industrial Vaseline, but it works. It stays on and my RO says my skin has held up better than most. I am red and I do feel burning sensations but no blistering or peeling and I am still in a bra and I have more than average size breasts. I use it three times a day and I place gauze inside my bra so it doesn't get on my clothes, at night I wear a cotton cami under my pj's. When I do feel some burning I use aloe and it takes care of it within minutes. It is hard to wash off your hands, so I suggest using a gauze pad to apply it also. Good luck and Merry Christmas!

  • sloyd66
    sloyd66 Member Posts: 202
    edited December 2013

    Thank KR13!! I got a small version of Aquarphor to try.. the Eucerin I didn't really like it. what aloe do you get or where do you get it from

  • sloyd66
    sloyd66 Member Posts: 202
    edited December 2013

    I'm on day 2, how long will it take before I feel or notice changes? I did have a little burning feeling today but nothing I couldn't handle.

  • lindacam
    lindacam Member Posts: 161
    edited December 2013

    I did not have any problems until 20..  Now read and blistered on neck and red on breast.  Using Aloe and burn cream

  • sloyd66
    sloyd66 Member Posts: 202
    edited December 2013
  • Rainyday2013
    Rainyday2013 Member Posts: 20
    edited December 2013
    Same here. I started getting problems in the underarm area after 20+. I had a sore spot that peeled. They gave me gel pads and they helped quite a bit, except they didn't stick too well. I was very red all over. I used aquafor at night and vitamin E cream in the morning. After being done for almost two weeks, everything is looking much better.
    Merry Christmas to all!!
  • wyo
    wyo Member Posts: 541
    edited December 2013

    HI all

    Hope everyone is "tucked up all snug in their beds".   Horrible fall hobbes- hope all heals from that little collision.  

    As far as lotions and potions during rads- at first I used nothing- I only had 16 treatments and it was not until treatment 15 I developed this bumpy red rash- that was a month ago today and it did not every peel- I did put on aquaphor just in case it was dry.  I also have an area under my arm- never appeared until after rads that is dark brown with a lighter area in the middle- again no peeling or burning.  I actually think I had more skin issues and fatigue in the time since radiation ended than I did while it was happening.  This is what my RO predicted so I was prepared.  I don't have those zingers people talk about but every so often my underarm area feels tight and sore so I exercise it.  Hope that gives you one persons perspective- we all have a different story.

  • hobbesla4
    hobbesla4 Member Posts: 72
    edited December 2013

    I am on # 24/30 later today.  Since about two weeks ago, my skin has been very purple/red angry looking color.  Earlier this week, I started developing pain in my underarm area.  My RO has me using the Baby Aquaphor ointment (It is a little thicker consistency than the regular one) as well as Aloe.  She gave me a prescription level Aloe sample called Regenecare HA to try.  (She has been wanting to prescribe a cream for me that is used by burn patients, but I am allergic to the components of it.)  She said that is it stronger than regular aloe and has lidocaine in it also.  My RO said that it is not covered by insurance usually and will cost about $30 for a tube.  Since I have only six treatments remaining, I am not sure about having her write a prescription for me, as I have not really noticed a difference since using the samples.  My skin is still a purple/red color, but the skin color itself is not what is bothersome.  People have described their skin issues as "sunburn" type pain, but it is not accurate in my situation.  The pain is definitely more internal.  (I have never in my life had a sunburn with internal pain, just more pain on the skin surface.)

    Wanted to share this with those of you who asked about what lotions or potions we are currently using.  Hope everyone is having a good week so far.

  • angelanature
    angelanature Member Posts: 179
    edited December 2013

    Hi All,today is 28/35 proton radiation day,I need extra days because my borders were within 1mm,my skin has been red,painful since last week but has been progressively getting worse, last night an area started bleeding and oozing.Should I insist on silvadene cream at this point?I also am having the internal pains too.I'm going to ask if I should take today and tomorrow off since I can't imagine my skin can take anymore "burning "at this point.Being a fair skinned redhead I've had my share of sunburns but this goes way beyond.I'm so done at this point. Angela

  • McKatherine
    McKatherine Member Posts: 300
    edited December 2013

    Angela - hugs!  Definitely have the nurses or MO look at your skin if it's oozing.  And make them give you something.   My skin never got quite that bad during treatment, but the nurses constantly said, "any day you need us to check your skin, tell us!" 

    Lisa - I finished rads 11/5 and my worst fatigue hit the week of Thanksgiving and the following week.   I'm still tired by the end of the day now, but when I wake up I finally feel like I actually went to bed he night before.  Hugs and prayers that your energy returns soon! 

  • TanyaF
    TanyaF Member Posts: 54
    edited December 2013

    I have finished 17/31 at this point. I am not really in pain, but I itch almost all the time. I have developed a rash in the chest area and all around my breast. I use a combination of miaderm, aquaphor, and aloe. If the itching is real bad at night I put hydrocortisone cream on rash area that is not on breast. Fatigue hasn't hit me yet.

    I take a shuttle to radiation with a group of others dealing with various cancers. It's nice because we are all going through this and we give each other support. Some are on their second go around with cancer. Everyone is positive. It has made radiation more bearable :)

  • angelanature
    angelanature Member Posts: 179
    edited December 2013

    Thanks McKatherine,my ro gave me off until Monday to give my skin a rest and then we have wednsday off too,Thank God! I've actually only have had 22 txs,how I got that wrong idk,I blame alot of things on chemo "brain",bad I  know.Proton radiation is supposed to be worse on skin than traditional rads but with less fatique (so far so good).I'm hoping it doesn't hit me a couple weeks after as I'll be returning to work after 6 months on disability for chemo and rads(I'm a pediatric nurse and fatique is out of the question).Hang in there all fellow troupers,I hope all our skin does too.Angela

  • hobbesla4
    hobbesla4 Member Posts: 72
    edited December 2013

    Wishing all of you a wonderful and relaxing weekend.  Had boost #1 today.  Very fatigued and sore afterwards.  Even though I had additional permanent tattoos done, for some reason, they drew on me with  a blue Sharpie.  They said that it would come off in the shower.  Took my shower awhile ago and noticed a lot of peeling skin, even more peeling around my nipple area.  I am thinking that it is normal, but will ask the dr. when I see her on Tuesday.  My skin is still very angry purple color and has welt areas which are peeling on it as well.  The positive side of this is that I can rest my skin tomorrow, Sunday and Wednesday.  The tech said that unless things change, I should be done next Friday.

  • Sandymomto3
    Sandymomto3 Member Posts: 37
    edited December 2013

    I too had the extra sharpie circle during boosts.  That area definitely got redder during the 7 boosts.  However, the rest of my breast and node area began to look better within a week of ending regular treatments.  Almost 3 weeks out now, and the peeling is getting less and red has turned to dark tan.  Still dry and itchy but the internal pains that came along with rads have also lessened.  

  • KR13
    KR13 Member Posts: 13
    edited December 2013

    sloyd66,

    I bought my aloe at the drug store in a spray can, just make sure whatever you get is pure aloe with no alcohol.

  • joannaraku
    joannaraku Member Posts: 30
    edited December 2013

    just had my lump and lymph node removed. one question I am on medicare how do you come up with the cash for the 20% that medicare  doesn't pay. Radiation will start soon. I live by myself so am concerned with the tiredness.

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