After Radiation
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good morning.
Susang--you gotta get that shingle shot....and everyone else who never had it.just 1 shot lasts forever.NO ONE WANTS TO GET SHINGLE.THERE IS NO PAIN LIKE IT.
Its so strange that the drs have no clue about edema,LE,shingles.They really need to be educated.Each dr.blows you off to the other (at least thats what they did to me)mild edema especially but i knew something was not right and i pushed for the script for LE specialist.If anyone has any questions about LE or Edema as I told GmaF ya gotta go to the I HATE LE thread.AND GmaF---i still think you have edema.
King---listen up!!!!in my youth i was roger ram jet..at this point of my life i drive kinda slower.dont worry i dont do tricks in the sky...fasten your seat belt.
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Granny - hey, ho, let's go......I'm all reved up and ready to go.....hmmm, aren't those the lyrics to a Ramones song?.....heck with seat belt, like living on the edge, more exciting.......I still have a heavy foot and speed around town in my new Camaro that DH bought me for my 50th birthday.
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off topic im havin a kind of emergency.not me.one of my friends has thrush along with diverticular disease.just dx.and freekin out.I hope someone knows some kinda remidy for it cause i dont like what dr.google said about tx.for thrush.
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Karol, I get thrush but as a side effect of some of my asthma junk that I use, I do a salt water rinse and it seems to work
hope your pal feels better
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thanks.
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Back from my Lymphedema Therapist - I think he is a keeper.. And someone jumped out of my pocket and whispered in my ear, "Edema or Lymphedema?" He said, "Lymphedema of the Breast".. He went through my history, asked lots of "when is the pain worse" questions, measured my arms, and then did a small sample of the MLD he does..
Funny thing though and he said I was Unique.. My dominate arm should have measured bigger than my non-dominate, but infact it was smaller.. I told him, after a year of being in pain on my dominate side, wouldn't it be more likely that my other arm became my dominate side? He thought about that and did agree that it was a possibility. What is your thought on this ladies?
Edit: I forgot to say THANK YOU for being with me in my pocket.. It seemed awfully heavy ... but was worth it!!!!
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jpmomof3 - During radiation I had good energy during the day and 'hit a wall' early evening that only bed would solve. Chemo tiredness was more general all day.
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Ohio4me thanks for the info, just trying to prepare myself for whats coming...
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Ohio - I didn't have chemo, but did well through radiation until the 4th week.. I still walked, just a little slower.. My real down moment was the week after when all the radiated skin started peeling off (they say larger breasted women burn more) and then about 4 weeks post rads I was very tired and couldn't seem to even walk - took me about 2 weeks to recover... That being said, everyone is different and the more exercise you get the more endorphins you have to keep you going... Just really listen to your body and get some rest somewhere everyday... Drink lots of liquids too!
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I didn't have chemo, but the fatigue was intense for me. All I remember about radiation was just laying down, unable to move for weeks. That said, the after effects of radiation are the most trying-the pain, the skin recovery, and my coming down with lymphadema. I would take fatigue any day over pain.
Granny-my doc is giving me the shingles shot as soon as my body is done with the shingles. If she gives it to me now, I'll just get more shingles. Anyone who is diagnosed with breast cancer should be given the shingles shot before tx!!
Sherry-very interesting about the fever blisters. I just had my bloodwork done yesterday, so we will see how my white blood count is running.
GMA- SO glad you got your answers and you're on the road to recovery. Hang in there, it will get better!
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HI everyone! Missed you all! Susan so good to hear from you!
Had an MRI yesterday. Having TONS of pain in the radiated, surgery side....Mostly at night when I try to sleep, hoping the MRI will shed light on the damage...I may be headed in Sherry's direction....
Can you all describe shingle pain to me? Does there have to be a rash? I missed work a couple of weeks ago. I woke up with a skin on fire pain and exhausted. Sat in a recliner with a pillow separating the arm and boob the whole day....
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gina-when i had the shingles i had pain the week before.then one morning i woke up covered.one side of my face.I tell the sistas over and over again get the shot before the rads......when you finish the rads you gotta wait i think 60 or 90 days.
Gma-i was the one whispering in your ear....lol.Im pretty sure that my edema is back.breast swollen so i put the compression bra on last nite.slept with that damn harness but im goin to the dr.tomorrow.im doin the exercises but i know whats comin and it aint good!!!!!!
Ohio-i didnt have chemo either.People say that rads are a walk in the park after doin chemo....im not so sure about that.I heard all kinds of stories...remember everyone is different.drink lots of water along with lots of protein....nothing is easy when it comes to bc.
it suks!!!!!
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gina so sorry you are having so much pain. HOpe they can figure it out. If you do end up with a MX I have to tell you it really has not been all that bad and the breast pain I was having before is all gone now.
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Gina-when my shingles started I got a stripe of red under my breast (shingles is confined to one dermatome on one side of the body-seems to be about a 4 inch strip of skin). After a couple weeks I started getting what looked to me like tiny pimples (I had nine in total stetching across my rib cage). Then I got terribly ill, could not wear a bra, and was extremely irritable. The blisters pop after a couple weeks. My first bout lasted a long time and had to go on gabapentin and amitriptilline for the pain. After that, when they returned, I would only get a blister or two and less pain. As soon as the blisters would pop, the pain would go away. My pcp was asking me at my physical last week where they started. Mine started right at the breastbone where the radiation would have been (it was under my good breast). So, in other words, I have no doubt it was rads. The pain is similar to the pain of radiation-heat, burning, and the more you touch it, the more it hurts. I had muscular pain as well in response to the pain. Honestly, I was having deja vu-felt like rads on the other breast. If you think it might be shingles, get on the antiviral right away before the blisters form. If they form and more than 72 hours passes, the anitviral probably won't help. The antiviral has no side effects and it would not hurt to take them if they are not sure it's shingles. Hope it is not shingles, Gina! they are hell....
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granny-sorry your edema is back. get on those exercises and I'm sure it will go away quickly. I agree. Radiation is definitely no walk in the park!! Maybe compared to chemo it is, but not having had chemo, I have nothing to compare it to.
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We will get through this together... Step by Step.. thank you for being here for me...
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I went to my internist who at fist glance knew it was the edema.She is sending me for a US of the breast along with a dopler US of the arm.I know ill have to have PT either way.Just hoping its not LE because LE and edema are sistas.lol.
nothing about this friggin disease is a walk in the park.NOTHING!!!!!!!!
ILL NEVER LET MY GUARD DOWN AGAIN...
huggggs K
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Granny - You learned to never let your guard down and I learned to stand up for what I need.... We make a great team here - I will remind you to be cautious and you can remind me not to let the docs step on me...
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GmaF----you got a deal..here is my handshake!!!!!
I feel so much better today...I really think,hope and pray its another edema flairup.
I have no pain and the swelling went down.
Its so beautiful out today.Dont even have a fan on but im afraid to go outside cause of the bugs.
My GD spoke to a friend of hers who is into the oils.She is makin me a special oil that will keep the bugs away.She will overnite it so i should get it on monday.
She had sent me oils before and they did work.Ill keep you posted after the engagement party next Sat...
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Granny so sorry you are having problems with the edemia. I saw your pictures on FB and the little ones are adorable.
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thanks Sherry...yeah they really are cute.
Im gonna be fine.
When i was in pa my GD dragged me to a oil class.amazing.i of course ordered some calming oil along with a oil to rub on my stomach to help all the pain.It seems to be helping a lont.Now she told me to call the lady and tell her my problem with the outdoor events i have comin up....AND THE DAMN BUGS...I explained everything to her and she is gonna make me up something to keep the bugs away from me.She will overnite it and it should come on Monday.For now im indoors.just dont want to start with this damn arm...actually the swelling is goin down along with the breast.But im being exta careful doin all the things im supposed to do.I even started to dance again.
We came a long way baby!!!!!!!huggggggggggs K
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Susan~ I'm gasping. I found a blister on me the day I had the MRI. I thought maybe I pinched my skin since they knocked the hell out of me with the meds - I never adjusted to get comfortable. The day it was at its worse, I couldn't even wear clothes, I sat on the recliner (missed work) and had to keep a pillow under my arm so it wouldn't touch my side. I just looked up shingles on Mayo Clinic site - I try to just stay with reputable sites...anyway, it mentioned Postherpetic neuralgia - I could be the poster child for it's description. All of us females in the family suffer from fibromaylgia as well, but this pain is so much more intense. I always catch myself telling people, my ribs hurt.
Granny~I had arm problems for over 20 years before cancer and the only real relief I ever got was last year when I went to a chiropractor. I was at a point where I figured it can't hurt to try. I haven't been in a couple of months and I can tell.
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Gina-If you need any more advice, message me on FB...sounds like it could be shingles. My primary physician still only half believes me that mine were---she never actually got to see a blister. I only get one or two at a time and they heal in a couple days. My rad onc diagnosed me when they saw the leftovers of my blisters and the red stripe under my breast.
Granny and GMA-take care and hope you both get better soon!
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Susan, I have red stripes under, but I thought they were from the bra hold up all that tissue!!! lol. I'm going to have to reevaluate! My blister is healed already too. Miss you Susan!
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I finished rads and started Tamoxifen two months ago, and I still feel tired....it may take some time to find a "new normal ".....I have become a huge label reader now....regarding the deodorant question, my MO said anti-perspirants with aluminum should be avoided...I used to use Secret, which had aluminum in it....I found a deodorant made by Tom's of Maine that is all natural, unscented and aluminum free...I've been using Burt's Bees hair products and plain Ivory soap....I've stumbled across some natural skin remedies on the Internet....olive oil and sugar for a cleanser/exfoliator, and ground up oatmeal mixed with honey and water for a facial mask.....God bless all of you...
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Susan1964 - You may find that you will be dealing with radiation fatigue for up to a year. I was dealing with it at 6 months out but slowly had more energy. It does go away and gets better.
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Hello all: I just posted on the radiation recovery thread. I need to hear some input from anyone who is taking or has taken Femara or Arimidex. Onco wants me to take this but I don't think I need to given my very good prognosis of the type of cancer I had. The list of side effects is too long for my comfort. I've removed my ovaries but she still does not think that is enough. Ladies.......opinions please........good or bad. Thanks.
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king I have not taken either of those but my DIL's mother had your diag with small dcis and she was post menopausal. She did lump and rads and her MO said she could skip the anti hormonals. If you really do not want to take them maybe talk to your MO about taking some of the natural things like DIM and myomim and have your hormones checked regularly
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Gina-the key to the red stripe is if you have it on the other side. My shingles were under my good breast, and I had the stripe there, but nothing under the radiated breast except normal discoloration. The blisters heal very quickly, so it is so hard to diagnose shingles. I would imagine that it is even harder when it is on the radiated side where there is pain anyway. The only pain that seems to be sticking around for me after all my breakouts is a little in my cleavage area at the side of my breast-this is where it all started. Definitely not bad pain, just there. So, it should get better with time. Gabapentin does work wonders! I am almost weaned off of it. I am taking 100 mg. I miss you too!!!
Susan
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I just found this thread - I am almost 4 weeks done with RADS. Skin is still discolored and a little itchy at times but that is about it. The two weeks after treatment ended was another story but like all things we just get through it.
kingir66 - I am seeing my MO next week and am suppose to start one of the AI's. I am not thrilled with the side effects either. I want to get some percentages from him when I go. Worse comes to worse I will try it and if the SE's are intolerable then I will go off of it.
Gayle
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