After Radiation
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Sherry-----im givin you a rain check on the dancin...
goin for the bras today..please sistas keep your fingers crossed that i find at least 1 bra thats gonna work.
huggggs K
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I'll take the black ones in a size 8. I am ready. Who is going to bring the music?
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granny I am sure you will find a bra today, you have done way too much research not too.
Jo I like the red shoes, but I don't know how to Salsa
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Sherry - I don't know how to Salsa dance either. Granny is supposed to teach us. She was a big dancer for over 30 years. I am leaving that part up to her. So the red shoes are yours.
Okay ladies I better post this information before Granny gets on me.
Most of you know I have had a burning/stabbing pain in the bad boob for 5 months now. My BS did a CT & Bone scan - both were negative and he could not see anything that would point out the source of the problem. Went to a pain doctor yesterday and he told me that the pain is nerve damage from radiation. I was told anytime you radiate any body part there will be nerve damage. It is treatable but most likely will not go away. There are several treatments for this and most start out trying different medications. If that does not work, then the next step is having the nerves blocked. I started taking 25mgs of Elavil last night and it already seems to be working. The down side is, I don't want to be on meds for this over the long haul so I am going to ask the pain doctor when I go back in a couple of weeks how long I do have to take this medicine and if I elect to go off it and the pain comes back what are my other options. Right now I am taking it one step at a time and glad to finally be getting some relief.
This is just another one of those things that I was not told about before starting rads - that this could happen. I often wonder what else my moron rad onc did not tell me. When I found out I had lung damage from rads, at first the rad onc denied it could be from rads and later said that everyone will have a little damage that it could not be avoided.
So frustrating. I do hate those kinds of surprises. Can't do anything about it now - so life goes and and we move on to the next thing.
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I GOT ANOTHER HARNESS!!!!!!YAY...$72.00...out of pocket but i really dont care.i was measured and the lady took very good care of me.YES i have to wear it for only GOD knows how long.She too said edema/lymphedema are sistas.wonderful.just what i wanted to hear.she is trying to get me some kind of reg.compression bras but is not promising anything.i did make her crazy.i wanted them in colors like black,red,purple.she said be happy with white.ugly harness but if it works ill be indoors for the summer.
JO JO--I thought i had the best RO and he never said anything about nerve damage.not before or after.and everyone gets it too??????and what do they call a little?????
CHEVY----where in the world are you today....she usually finds the answeres to these questions.gosh IM SPEACHLESS.
once again AFTER RADS SUK.huggggggs to everyone kantalope
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Granny - Not everyone will feel the nerve damage just like not everyone gets lymphedema or edema. That is a crap shoot.
So glad you were able to get another harness. Hope you can get a compression bra so you can venture out this summer.
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Jo welcome to the nerve club!! haha not My BS did not give me much hope of mine getting any better and sounded like this would be a lifelong problem. I have been on Elavil for two months now and will see the pain Dr. tomorrow so will be interesting to hear his take on all this. My pectoral muscle is also very tight and hurts when extended but the RO said that happens and will take 2-3 years for my muscle to settle down. I hate radiaiton, wish I had never done it.
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Sherry--i was thinking out loud on one of the other threads and i said if i had the option to do it now that i know what i do WOULD I DO IT????i think i would.not really sure but i didnt have to do chemo onco was 10 and im not doin any ALs.so if i didnt do the rads i would be a walking time bomb.like im not now!!!!!!!!.ARE YOU SURE YOU WOULD NOT HAVE DONE IT????REALLY SURE!!!!!!!!im not.0
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Okay now Princess Kantalope! A few women are having problems with nerve damage, but that doesn't mean that you or I will! Now PLEASE don't go stressing over that too!
Thank God you have a bra that you like! Holy Mackeral girl! If I hear another word about your bras, I'm going to lock you in your room, and feed you milk-toast & pickled pigs-feet!
And Jo is right! You can go on with life, this summer, and forever! Don't anticipate what COULD happen, because we are so lucky it isn't any worse than it is!
Okay girls! Gotta go finish scraping paint off my picnic table, Ha! xoxoxoxoxo
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granny if I had it to do all over I would have had a MX and no radiation. It all happened so fast and my Dr's did not offer it to me at the time, so I did not think that I could have it done. My gut all along said to have a mx. I found out when I was 1/2 through rads that the mx and no rads was an option for me but by then it was to late. So I feel pretty sure that I would have choosen the MX. My onco score was 23 and I did not do chemo so I know that I have to take Tamoxifen, no options there. Side Effects and all I just have to try to make the best of it.
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Sherry - Life Time Nerve Club Members. That sucks. I agree with you, if I knew then what I know now, I would have had a mx and no radiation. I was offered an mx but was not told I would not have to do rads. Everything happened so fast with me too - it took awhile for my head to stop spinning and get my feet back on the ground. I hate rads - wish I had never done it either.
Chevyboy - Glad you are here to try and calm kantalope down. She is stressing way too much. she seems to listen to you.
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chevyboy - you are too funny! What's with your CAT!!! He looks sooooo comfortable.0
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Gimme a size 6 shoe! I don't care what color..just wanna dance with you ladies!
Granny...another harness, huh? That sucks...but I bet you make that harness look mighty FINE, don't you???
Nice cool evening here...gonna sit on the back patio and enjoy a little bit of it...crazy weather the last week or so has me ready for some nice, calm, relaxing evenings...
Hope everyone is having the most amazing evening that they can!
Hugs and high fives!
Tori
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ToriGirl! You forgot "high fives with drinks!" Ha! We can still drink, right? If it isn't soemthing with alcohol, then drink milk!
Jo, how is your pain? Is it the Elavil that is helping you? And you know, it COULD have been the Tamoxifen that was causing that..... When I was taking it, I used to have the WORST pains in my knee in the middle of the night, & even first thing in the morning, I could hardly stand on it...I never thought it was the Tamoxifen, just "Bursitis".... So maybe like you said, we don't "know" what it was....So glad you are getting some relief!!!
Omaz! That silly cat is not my cat! I wish he was, but his picture was on the Internet somewhere, & I loved it. We have a little Sheltie, that purrs like a cat when I pet her....spoiled brat, she is....
but she is a darling! Morning Sherry! I guess we can always think of something we could have done differently, but we just gotta make the best of it....My oldest Daughter wanted me to have BOTH my breasts off, just because she thought this would make sure I would never have cancer again. I am so danged glad I didn't listen to her! My team didn't even mention a mastectomy...just the lumpectomy with the Mammo-Site Device for Radiation. I was so lucky, and I thank God that everything went so well for me. (Well, a few minor complications after the fact) But I feel so bad for you gals that have to put up with so much more, AFTER your surgery! Just believe that tomorrow will be a better day....
Princess Kantalope! So is everything working out for you? Tell us about your bra! Or maybe not! I only want to hear happiness and sparkly things from you! See, if you post on here, that is supposed to HELP you feel better! We are here for you kiddo.....warts and all!
Love you gals! xoxoxoxo
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Chevyboy - One thing I do know for sure is the Tamoxifen did not cause my pain It started before the pill. It is day two on Elavil and so far so good. At least the pain never bothered me at night and it is still early in the day. I am hoping to say pain free - I almost forgot what that was like. Maybe the added bonus with this new pill is that is will improve my mood.
Sherry - Good luck to day on your pain doctor appt - will keep you in my thoughts.
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Ok all I just got back from the pain doctor and got very educated today. He was very good. He said that since the Elavil is working for the most part he wants me to continue to use it. He also gave me a compounded cream to use topically. I used it after lunch and it works. He felt that this course was better than using a nerve block which I am fine with. I also talked to him about my sore hips and shoulder area. He was very good at explaining that radiation does cause more problems. He said it is very good at doing it's job killing the cancer but that there are SE's that come up and you have to deal with. He said that even though our breast got radiated that there is no way for them to miss our bones in that area. He said the radiation can cause a molecular change in our bone marrow and can cause osteoarthritis and osteoporosis in other parts of our body and can come at later times. He said expecially if you were maybe prone to it and it can cause you to have an earlier onset of it. He feels that mine is osteoarthritis, even though I did not have it before any of this. He said since the Celebrex helped along with the private yoga lesson that I had last night that really stretched my hips and shoulders he felt was the best way to deal with it for now and we will continue to monitor it. He feels like the nerve damage was caused more from radiation than my surgery. I talked to him about my surgeon wanting to do the MX. He said if it was only for the nerves he would not recommend it but because I have some other issues he felt that it was a good choice and then my BS can deal with my nerves from there. Although my BS told me and he told me there is no guarantee that it will completly go away but they both said that she can make it much better where I can probably get off the Elavil and if I need to keep the topical I can. Or if I am lucky she will completely take care of it. That is what I am hoping for. So it was a very good office visit and he was supper nice and informative. Oh also because I broke my neck in 1995 and already had nerve damage on my left side he said that did not help my situation any. Luckily that nerve damage does not hurt I am just numb in places but it said it left me vunerable with the radiation.
Jo I sent you a PM
I hope everyone has a wonderful weekend. I know I will cause I now have stuff where I won't hurt at all. woohoo!!!
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Sherry - Terrific news - what a way to start the weekend and pain free - that is even better.
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Yes it is, pain free I'll see if I know what to do with myself. I am so thankful for insurance. This compounded cream is $298 but with my insurance it was $30. Oh granny guess that is my middle age discount. haha
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Sherry - I'm sure we will both figure out what to do now that we are pain free. Yikes! on the cost of the cream but it is worth it and yes, thank goodness for insurance.
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Sherry... You and I have communicated for the past few months, and had very similar diagnosis'... and the plan for me from the start was lumpectomy and radiation... I had chemo tho in between which bought me a few months, which I used to research and question EVERYONE... I was so very tirn between the rads and MX, and scheduled 3 PS appts and met with the RO... even scheduled both my MX and simulation for rads... and waited til the 11th hour to finally cancel my simulation and commit to the MX, which will be July 21st in New Orleans.
During my research, I read another woman's post who did rads, got nerve damage and was getting the MX to resolve the nerve pain... so it has been done... and one positive spin on it, if you chose to go that route is that you have zapped the cancer, nodes, clavicle and chest wall... so you have covered your bases... don't regret the rads because you can't go back... We all make decisions and trust we are making the right ones for us... I know I totally struggled with this one and of course if I have a MX complication, I will probably say "oops... shouldn't have done that" but we need to decide at some point.
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CHEVY---dear sista---im not stressin over nerve damage...hell no..thats one thing i didnt get (yet)just didnt understand it.never even thought about it till now altho a sista a while back did mention it to me but it didnt stay in the brain.DO I LIKE THE HARNESS????sure!!if i wear a high neck top and long sleeves im fine.ha.Yes im gonna shut up finally and realize how lucky i am to be alive.BUT I NEED YOU TO REMIND ME.Went to PT today and she said im doin great.gotta stop waitin for the other shoe to drop!!!!reality check!
JO JO---no im really not stressin anymore over that stupid harness.Glad you are finally gettin some relief...its about time...and im glad you reached out to the sistas.AND YES IM SCARED OF CHEVY!!!!
TORIGIRL-----come dance with me!!!!i betch you can do the salsa,AND dont drink with Chevy...she may love you but between that shit food she eats and GOD only knows what she drinks...get your dancin shoes on and come over here.i have the music
Sherry-i wanted the MX but it was not an option for me.your pain dr sounds great.and you are finally getting relief.wow thats great.Yoga and exercise is just wonderful for all kinds of aches and pains...im a big fan of both...as a senior i pay $7.00 max.for a script.yay look whats waitin for you.shit it sucks to be a senior and i hate that word senior...makes me feel like a old fart.
bdavis---thank you sooo much for putting everything in its proper perspective---we do what we think is best at the time and hope and pray its the right decision...the should i shouldnt i will make you crazy like me...it drove mu up a wall.ask chevy!!!!!GOOD LUCK on July 21 with the MX.we will be holding your hand.
i love ya girls.have a wonderful weekend and be safe.Please remember what Memorial Day means !!!!!!.Pray for our troops and thank them for keeping us safe.GOD BLESS AMERICA.
AND A SPECIAL PRAYER FOR OUR TORIGIRL WHO HAS A FAMILY FULL OF TROOPS.
hugggggggggggs Kantalope
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Thanks Kantalope...they appreciate the prayers! So do I!
Everyone...have a great holiday weekend....
Be good to yourself...
Try to have some fun...
Hugs! High fives! (cold cocktails too!)
Tori
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Morning gals! Oh Hey Kantalope! Geez, you sound so much better! So did you like the milk toast and pickled pigs feet I was giving you?
I am so happy your Black & Decker Bra is working for you! You could always put little ruffles & sequins on it to brighten it up a bit! And WHAT? You don't like the food I eat? Last night I had a half of a toasted chicken bake from Costco, and a small green burritto from Taco Bell! But we didn't eat lunch. What did YOU have, cream of wheat & spinach juice? Ha, ha!
Shari & Jo....I really hope you gals have a handle on that pain.... It's true, the Docs we go to can't know everything....There is no way they can predict what will happen if we do this, or take that..... They go by the books too, same as we can look up the same information.
bdavis....yes, we all are responsible for our own decisions. It was my decision to take Tamoxifen...Went great for a year, then I lost my hearing. When I was trying to figure out WTH happened, I called the Oncologist and he said "how old are you?" I told him I was 23,
I mean 73, & HE said well maybe it has something to do with your age! That b******! WELL, so that means I went to bed one night & then woke up "old" the next morning! It happened that fast kids, & this ignorant Doctor had never heard of Tamoxifen doing this, so therefore it didn't happen that way.I reasearched this & found 5 different web-sites that talked about Deafness from Tamoxifen...so armed with THIS knowledge, I sent this information to my regular Oncologist, & my Radiologist, and the Pharmaceutical company that makes Tamoxifen. I quit the Onco who thought I should keep taking Tamoxifen, & am staying with my Radiologist who thinks they just can't predict what will happen to ANYone! All I want is for the drug companies to put a warning that this CAN happen, and also heart attacks from taking Tamoxifen. Gals on this forum have really had serious SE's....Mine was just minor, because I have hearing aids to help... But like you bdavis, at least I gave it a shot, and then we go on.......
Tori girl.....Hugs to you honey.....I'm honored to be in your company and your Husbands! You are all that America stands for...God bless you! Have a wonderful week-end gals! xoxoxoxoxoox
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hello ladies i finished rads 2 weeks ago ... time to join this topic 0
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bdavis thanks you are right we make the desions we do with what we have at the time. And yes I have thought about the fact that even though I am getting a MX I have also been radiated in the places that I would not have been had I had a MX at first. I know my surgeon can take care of the nerve pain long term and in the mean time this pain Dr will help me out. I think I am most bummed about the osteoarthritis setting in because I never had that before and think I am just to young to have to deal with it. But I will and hopefully and it will not get much worse any time soon. Glad you finally made your decision on your MX, from all our past conversations I think you will be much happier with that decision. Keep me posted on how your are doing.
Granny I need your senior insurance, maybe you can adopt me and I can get your benefits.
Jo at least we can both have a pain free weekend. I am so looking forward to that. Going to a bridal shower this morning and then into Austin to help my mother look for a computer. Not sure why since she is scared to use them but she wants one so there ya go.
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Welcome Angelice - Glad you found us but sorry we had to meet like this. This is a fantastic bunch of gals. The information on here is super but watch out - we tend to get wild and crazy sometimes. We can get serious when we need to but the fun factor makes us stop thinking about BC and allows us to get kniow each other better.
Chevyboy - FInally, Kantalope is getting back to her old self and has stopped stressing over the harness. Love that you called it a Black & Decker harness.
Still pain free - Hooray. Watch out world - I'm back and ready to take you on.
Since this is Memorial Day Weekend and as a 20 year Air Force veteran myself, I would like to send prayers and good thoughts out to all our troops and their families. I do know what it is like to be away from family and friends on foreign soil.
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Hi all, I'm new on here, and have been reading all of your wonderful posts, and feeling much support and a sense of community from them all so thank you!! I have been done with rads for 3 weeks, and have been trying to get back to my life which includes running. I used to run miles, but now it's a struggle to finish 2 1/2. I am so tired a lot of the time. Some days are really good and I feel like myself again, and then, like today, I feel just wiped out. At the same time I was having my lumpectomies, I had to have LEEP treatment for bad cells on the other end of me. I am very grateful for medical advances and techniques that keep all this crap from becoming really bad crap but am having a hard time moving on. How long did it take you all to get your regular energy back?? Any problems with depression? Thanks !!
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kathyob - Welcome to the group. Sorry we had to meet this way. I finished rads the first part of December and it took almost 4 months to really feel good again. The radiation fatigue can last up to a year. You just need to pace yourself and listen to your body - rest when it tells you. It is a slow process to get the energy back but it will. Heck, I still have a day here and there when I feel like I can't do anymore. The depression comes from wanting to get back to some sense of "normal" and it is frustrating you. Just try to relax and breathe - go with the flow and before you know it you will be able to run the full length and then some.
It does get better it reall does. Hang with us - these gals are fabulous.
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Prayers for all our troops and my thanks to all who serve or have served our country.
Thank you Jo.
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CHEVY----did i ever tell you how much i love you????and the names you give me????kantalope!!!!black and decker !!!!whats next????
Angelica-welcome to this crazy buch of gals.we are all nuts but we are sistas helping sistas.stick around we are here for you 24/7.
SHERRY----consider yourself adopted...get the papers and ill gladly sign them.ha.
Kathy--2 newbes in 1 day.welcome---everyone is different with the energy/depression and pain.Please hang with us.everyday we get more and more info.and we share.
Once again i want to remind you sistas that after the rads SHINGLES may become a part of your life.If you havnt looked into the shot please do...You have to wait till your 2 months past the rads.no one wants the shingles.
Stay safe and hugggggggg someone who is serving our country...love you gals.
goin away and probably wont be back on till wed.gonna try to sneak on the puter but not too sure about that...enjoy the long weekend.I love all of you.huggggs K
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