After Radiation
Comments
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Here's a great link to lymphedema of all kinds:
truncal lymphedema: http://www.lymphnotes.com/article.php/id/461/
All other lymphedema click on 'Home' on the top banner
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Grannydukes and all, hello
I just wanted to pop in here with some reliable sites for lymphedema information. Here are two you should know about:
The National Lymphedma Network has Position Papers on Risk Reduction, Exercise, and Air Travel to help you plan ways you can reduce your lymphedema risk:
http://www.lymphnet.orgStepUp-SpeakOut is a lymphedema information site specifically for breast cancer patients. There are pages on Reducing your risk, How to find a well-qualified lymphedema therapist, Essential Information for healthcare providers, Truncal (breast/chest) lymphedema, and lots more:
http://www.StepUp-SpeakOut.orgThere's also a forum right here at breastcancer.org about lymphedema, with lots of experienced women who can answer your questions and share their experiences.
Hope none of you ever join our Sorority of Swell!
Be well!
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Girls, Girls , listen up.Please read the threads that our sista Binney sent us.
We both belong to another thread and she told me that having slight lymphedema is like being slightly pregnant.dont ya just love it.
There is a ton of info here.Also a link for a bracelet.AND ITS FREE.
I am sitting here at this puter dazed.
Thanks Certified and Binney...knowledge is power.hugggggggggggsK
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I'm officially qualified for this board since I finished rads on Friday the 15th. I'm to tired to write now but will be back. We had an Open House for our 40th wedding anniversary yesterday (just 2 days after rads ending) and I'm exhausted. I will be back soon. My body is screaming for rest and sleep so I think it best to listen to it. Also, my 84 y.o. Dad is very ill. Stress, stress, stress.
Hugs,
Juanita
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Jwatrlily - Gigantic congratulations on finishing Friday! Hurray!! Get some rest and come back when you can. Best wish to your dad too, hope he gets well.
Hugs to all my rad friends!
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Welcome Juanita...yay done with the rads.rest up honey.and dont forget to keep creamin.come back to see us whenever you can.sending a prayer for your dad.
I called my BS this morning and got a script for a therapist for the (slight) ha. lymphedema.I read everything and i have to take care of it.soooooo when i get back from PA after Easter I will have my script waiting in my mailbox with drs names.
and the beat goes on....hugggggggggggsK
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Kantalope! When you told Tori about her "boob was crying"....it just brought tears to my eyes. That was a beautiful explanation as to why it hurt..... Yes....I can see why our little boob's would cry!
But then you know, some of us still have our breasts....and I cry for the gals that lost theirs and even much more, to cancer..... they are my special angels! I just thank God, that I am old enough to appreciate what I still have.... The young gals.....and like my Daughter's....I would just not know what to do if my girls got cancer.... I could handle it....but not for my girls....
Okay, I'm done being serious! And you are going to be gone past EASTER? Well honey, have a very happy time with your family.... And you to little Tori! And ALL you gals! xoxoxoxooxox
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Juanit welcome to the group. CONGRATS ON FINISHING RADS!!!!!!!!!!!!!!!!!!
Had my mammo done today and everything is clear. The tech was very gentle and only one position hurt. The original calcification's that started all this last year have not changed. Some were removed when they took my tumor out but not all of them. So all is good for now. Also had my yearly gyno appt today. I was kinda wondering why I keep having to have pap smears when I have had a hysterectomy. Anyway she says new guideline if you have had a non cancerous hysterectomy you no long have to have pap smears. BUT since I have had BC I get to continue to have them. gee what a nice present!!! So I talked to her about the whole nerve damage thing going on in my breast and the mammo and mri screening every six months yada yada yada and that my BS wants me to consider having a MX now. And she tells me she totally agrees with my BS. She said if she were in my shoes and with my risk ect. she would have a MX done. So I guess that kinda seals the deal that I will go through with it in probably July or August. I'll have to see when my BS wants to do it after I am in the post rads safe zone. Otherwise life is good!!!!
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Im not leavin till tomorrow but i just wanted to share some good news.I was roamin around and saw this thread cancer free.so i went on it.dont know how i missed it.anyway one of our stage 4 sistas got a clean bill of health.that brought tears to my eyes.To me they are the true BC heros.Sure we all suffer a lot but stage 4 takes it to a different level.I pray a special prayer for them.This gives everyone hope.
I will be back.xoxoxoxoK
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Sherry----sending you a BIG HUGGGGGGGGGGGGGGGGGG.0
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To all of you who may have been affected by the horrendous storms, my prayers go out to you!
take good care and just breathe. . .
Teklya
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Hello, I've been finished with radiation for about a month and have a follow-up appointment this week. Just having a hard time making myself go. Anyone not go to a follow-up appt ?
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I cancelled my follow up appointment (which was for skin check two weeks after rads) because I was packing for a cruise and secondly I felt it unnecessary as I had healed well from the burns. I asked for a three month follow up and was told "you need to see the RO within a month following rads". I felt it was B--S---T. I politely said "no". I have already been billed for rads on days I had not even started the treatment and then after that for rads on a Saturday, they are not even open!
I needed some control of my life after months of treatment. I may be wrong but I don't think so. I will see my MO next week for the BC and also ongoing leukemia.
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When I finished rads they just scheduled me for mammo and followup with RO in three months. had my mammo this weeek and will see the RO next week and I think that will be it and I will not have to go back.
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Chevyboy - grannydukes dubbed it perfectly "crying boob." Mine is def still crying, but little by little I think it's getting better. Hope the same for you...I read you had to give up tami, are you on a different estrogen blocker now?
Sherry - I'm so happy to hear your mamos were clear and didn't hurt too much...that give me courage for next month, thank you. Was sorry to read they are now recommending mx. You sound very positive and good about the future though, so that's great to hear!
grannydukes - thanks for telling us about one of our stage 4 sisters who's dancing with NED, that is such great news!! Gives so much hope for all of us!! Have a great trip and see ya when you get back!!
out03doors & lestwin - I had 33 rads, with the last 5 boosts...my RO (who was fantastic) said no follow-up with him at all. I've never been back there at all since the last zap. I'm just doing what my MO tells me from here. I didn't get fatigue anything like I was expecting so right after rads my husband and I tood a trip and went camping and stuff, we were gone about a month and had a blast! I hope you will have fun too. I didn't have any problems until a few weeks ago my crying boob started to swell and get hot. I dont' think that happens to everyone, but it apparently happens to some of us and is fairly normal. Anyway, it's getting better.
Big hugs to all my rad sistas!!
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No Beanius! Thanks honey....I just now saw your post! I'm not taking anything else...just a boat-load of vitamins & supplements. I hope that is enough to get me NED in at least 2 to 20 more years, Ha!
I just heard from my Rads Doc. She will take me as her patient instead of the in-different Oncologist...who thought hearing loss was no big deal! I mean she thought I should stay on it! So I called the Rads Doc....Now I can see her for check-ups, and she will order Mammogram's and I will go to my PC for the blood-work every 6 months!
So happy for you Sherry!!!!! I just hate thinking about those Mammograms! But I must say, the last two smashed that seroma to smithereens! At least that "lump" went away! I have to remember to ask for a neck shield...Is that what it is? To protect your thyroid?
Good luck to you lestwin! Yes, we DO have to take control of our lives....I didn't like my Oncologist after she thought deafness was no big deal, so I cancelled the next appointment, & will just never go back!
KANTALOPE!!! Are you having fun with your family? I just KNOW you are....so don't forget to post! xoxoxoxoxo
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sherry--you serious about the mamo not hurting too much????I am sooo not lookin goward to the first one.My BS told me expect it to hurt especially with the swollen boob.Im so glad yours wanst soooo bad.
Beanus--thanks for comin aboard...we with the lymphadema need your imput
Sistas--she is an expert.
Most of our sistas did suffer from the fatigue...Im still feelin it.comes and goes.
Ill be checkin on my sistas while im away...enjoyin my family soo much.they are timin me on the puter sooo its gona be just checkiin in....im so addicted that they make fun of me....uh oh time is up...huggggggggggggs K
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grannydukes my mammo really was not that bad, but I have to say my tech was very gental and was really careful in sqeezing me and kept asking if I was OK.
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Chevy----glad you changed Drs.your onco was not worth a dime anyway....BTW I just read somewhere that a sista got a heart attack from the tamox.shit those ALs do cause lots of S/E(not for everyone)but like chevy im not takin them either.doin the same with lots of vitamins,exercise,changing foods and prayin to stay NED for as long as i can.
now i just have to concentrate on the cryin boob.
Tori--hope your doin good.miss you.
hugggggs gotta go.my GD just walked in and we have to have dinner.xoxoxoxoK
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Hey sisters...
Just checking in to see what I"m missing!
Still at my dad's and just having a wonderful time...so wonderful to just sit around, chat, relax and have some fun!
Got the Vitamin E cream and started to use that this week. I am healing remarkably well, (I think), so that is a good thing...
I do go back and see my RO on May 17 (one month past last tx)...and that's fine with me. I love her and her team...she will also let me know when I can get in for my first mammogram after all this treatment...I"m already dreading it...
I also have another appt with MO on May 5th...then every 3 months for awhile...AND I have to get in to see my gyno for my yearly!
PT starts for me the day after Easter as well....3x a week for 3 weeks...not too bad...but another UGH...
Were you ladies doing BSE's during rads? OR are you doing them at all now? I"m not quite sure what to think of them at this point...couldn't feel anything before....
Grannydukes...always wonderful to see you on here and being so good to everyone...
Chevy---you make me laugh so hard...
Ladies--hope the rest of you are doing well....praying for you all...
Tori
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Morning gals.... I just feel so sad today....Marybe on another thread is always hearing bad news, and she is in this fighting with tooth and nail..... Kantalope, I think she needs all the support she can get.
So I shouldn't moan about losing my hearing....that is nothing, compared to what these women are going through.
Little Miss Tori....I'm glad I make you laugh!
I try and make ME laugh sometimes too!I call Granny KANTALOPE, because she signs her name "K"....I said "What the heck does THAT mean, Kantalope?" And it stuck.... and she named her one boob KANTALOPE! Because it is her problem boob!
So I have a lot of fun with Kantalope....I think she is one little fiesty New York Italian, straight off the streets with the Mafia! Well, she SOUNDS like it anyway, Ha! I have to love her, because she is like my Daughter, or my Sister, or something, that I am always trying to make her behave. I yelled at her for the longest time, so she would get radiation.....She finally did, but now her boob hurts.... (I'm sorry little Kantalope).....but I'm proud of you! Boy you sure take your time getting back to us on the forum here!.....
Tori..... I wish I still had my Dad....just to talk to sometimes..... I really miss that.....So enjoy him honey.... So what are BSE's? I don't know if I am doing them, because I don't know what they are. Maybe I am doing them, & just don't know? Tell me.
Okay....here is a "good for you breakfast"....
Well, it's "vegetarian" anyway! xoxoxoxoxoxoxo
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Chevyboy...now I'm hungry!
I'm 52 days out from my last treatment and I'm still so fatigued. I'm back to work on a half-time basis -- I've put off my return to full-time three times, now I'm scheduled to be back on May 1 and I'm not at all sure I can do it then. Part of the problem is that I have a horrible work schedule -- I have to get up at 3:30 am and I'm not a morning person by nature. I was having serious problems with fatigue and insomnia before I got cancer, so I'm not really surprised they're worse now.
And of course everyone keeps saying to me "Well, you LOOK great!" Maybe I need to buy some pale green foundation and some gray eyeshadow to accentuate the bags under my eyes, so that I can LOOK tired.
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Well Eloise! You look like you are tired to me....
Just KIDDING! You know, if you don't get enough sleep, it just wrecks your whole day.So here's what you do.....Get some bright blue eye shadow, black mascara & eye-liner, and put on red lipstick! Ha! I think they tell you that, because they know what you have gone through... and they might be trying to cheer you up!
If you FEEL tired, your body is just telling you that you really have to get more sleep....Have you talked to the Doctor about this? And I don't think there is anything to take, to help you feel better after radiation! It just takes time....Are you taking vitamins & supplements?
And if you can't take on a full work load, just don't! Tell them I said so..... Yeah, THAT ought to help...
But honest...just take care of yourself, first! xoxoxoxoxoxoxo0 -
was it something I said?
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Brief check in. Radiation fatigue is kicking my behind big time! I have a busy 2 weeks coming up and hope I can carve out time for rest. A friend who only just finished her treatment for breast cancer 4 months ago has 2 new spots. I'm not sure if it is liver or lung but I'm so sad for her. Only 4 months since treatment ended and it's already back. I believe she was Her2-Neu positive.
Juanita
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Juanita you def need to make time to rest for yourself. So sorry about your friend finding new spots. So dishearting after you spend so much time in treatment.
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Juanita, so sorry for your friend. You just need to take the time to rest as much as you can. I remember I literally would fall asleep while standing up, sitting in a chair and I mean BAM it was fast! Out like a light.
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I emailed my doctor today and told him I was still having some fatigue issues -- he emailed me back within a couple of hours saying I was probably just recovering slower than most, but to be on the safe side he was ordering some blood work. And also suggested that I should exercise when I feel tired....I didn't mention to him that I almost fell asleep on the treadmill at the gym!
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I have a 3month post rads follow up with my RO on Thursday. Had my mammo last week which was clear, but I am have rib pain under my radiated breast. I had this about 2 months ago and it went away and now is back. It is not too bad just feels really sore to the touch. I have searched on the internet and seems this is fairly common. Don't know if anyone else has had this. I am def going to talk to my RO about it on Thursday. Of course so much of what I have read says that RO do not like to admit this is a SE of rads. Guess I will see.
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well im back.was not able to get near the puter while i was away.bannned by the 1 yr old great grandson.i had a ball with him.glad to be home.
Tori-glad you too had a great thime.I know you went for pt yesterday.im goin tomorrow.how did you make out?
Barbara A.i know you did too..im goin tomorrow.anyone have any details?
Chevy.my sista from a past life.thanks for the kantalope story.you are one of a kind as these girls kinda figured it out by now.thanks for amusing them.
Eloise-the fatigue can last a long time.im almost 3 months out and i still feel it big time.i never go anywhere without my dark glasses.
Juanita...i am soooo sorry for your friend.bc suks.everything about it suks.im prayin for your friend and you too.and all of us.
gosh i missed you girls.still prayin for a vacine.BTW one day I slept for 7 hrs and got up and went right back to sleep for another 6 hrs.boy did that feel good.
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