MIDDLE-AGED WOMEN 40-60ish
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Jo, sorry about the lung damage...I was warned and had to sign a waiver before radiation but I thought ...breast cancer is for sure...lung damage is a possibility not a definite so I went ahead...wonder was it the angle of the machine? the number of rads you had? Definitely report it and let yourself be angry and let it out...no more festering inside!
So glad the scans and CT were clear. A blessing for sure!!! and good they hav eyou scheduled to see folks who specialize in lungs....chin up Jo....one fear down...now you have some answers, which in the end, is better than fear alone.....knowledge is power my dear. Be gentle with yourself (but give those folks at the hospital hell!)
Sandee
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Thanks ladies - At least now I know what I am dealing with. Just gonna take it one step at a time. Have too many other things to do and not gonna worry about this. Have to get it out with the RO though. It is enough we have to be here to begin with but then to have to deal with incompetent liars that is where I draw the line.
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jo, I am sorry to hear that news. Why don't you Google "pulmonary fibrosis" which is the fancy term for the scarring on the lungs from rads. It is one of those low, but very real, percentage risks from rads. It will be good to try and find out from the pulmonologist how much of your lung is affected, and if there is a way to minimize the effect.
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elimar - Thanks! I will do that later. I was off the internet all day - no power and lots to catch up on. That could be ammunition I could use against the RO. Seems I end up with the low percentage risk SE's. Just my luck.
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Hey Middles, I haven't been on a couple days, due to my Uncle Joe vistiation yesterday & Funeral today in Kentucky, My Aunt from Waco, Tx got delay in Dallas ,Airport all day, because of Ice storm. She didn't get in til 1130 last night, I thought of all of you guys from Texas. Hope your safe & warm! Thinking of all of you Middles!
{{{{{{{{{{{JO}}}}}}}}}}}, You are such a Positive Person. Please, remember we are all here for you!!! keep us posted! We are all praying for good news. Are you going to see a Lung specialist? Love ya!! xoxxo
Have a Great weekend evrybody!!! {{{{hugs}}}} Gina
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Gina - I am scheduled to see the Lung Specialist on Feb 15th and then the surgeon on Mar 4th. Will let everyone know what I find out.
In the mean time - I have more important things to do - like living my life - I do remember having one of those before BC. Going to pick up where I left off.
Thanks to all the Middies - you are a wonderful bunch.
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Aw Jo - glad it wasn't what you feared and p%ssed off that it was what it turned out to be...that is what has kept me from taking the AI prescribed...I will see next week if my regimen of DIM and other stuff has kept my estrogen at bay. My onc did a 180 on supporting my taking it and balked at an estrogen level test! I will stay with her for the testing- as they all seem to poopoo side effects and basically offer the same thing to everybody according to diagnosis. The last visit was rough as she listed all of the drugs I would be prescribed to combat side effects. I suggested it might be wise to see what my d&my baseline was and she said "Does not matter how low you have gotten it with your little vitamins you have to take an AI" To which I said is there anything the AI does OTHER than suppress estrogen? No, she said. To which I said if I can lower it with less impact to my life in general how can that ever be a bad thing? No answer. At this point I had been on my regimen for about 3 weeks. Then I said how canyou know if it is working if you do not take my estrogen level...regardless of "my little vitamins" or an AI...drum roll....THE SIDE EFFECTS WILL TELL ME IF IT IS WORKING>! I have heard other women say this is what their doc told them but you could have knocked me over with a feather. This is an educated woman telling me this horsesh*T?! It hit me that it was no error that of all the blood work done my estrogen level was the only one that did not come back...she did not want me to know what the level was so I would capitulate to the AI....I mean really, how crazy is that? I pretended to agree and took the prescription and yet another free sample of an AI (I now have two and counting). When I was in the car I called back and said, humor me, I am a numbers person and since I am going to take this drug I need to know my numbers so I can watch as it heals me...the nurse came back on laughing and said we knew you would insist...ok..we will order it. Remember,your part of the deal is to take the drug. Indeedy....not. I go back in three months and will get tested again. If the number supports my regimen I will stick with it. If not, of course I will reconsider, as I am no fool. If it is working I will moan and groan and load up on all the drugs to combat the side effects I will mimic for her. This is ridiculous but I do not want to pay out of pocket for the tests that insurance will only cover if the onc orders it. ARGH I promise you all that when I hit the BIO conference in DC this summer I will be picking all of the top researchers' brains. And I will start with the feds. They will think it will be to write an article about the new research centers (which I will) and in turn will let me talk to the scientists...those folks love to talk about cause and effect-the real stats. After all, that is the same conference where one of the leaders from the Pfizer team that developed Chantix to stop smoking told me no way when I said I wanted him to hook me up! Said just too dangerous at this point-that they were having some real problems with it...and he was right. Two weeks later they put a black box warning on it. Now the leading research is pairing it with an antidepressant to offset the violent mind games it spurs...I go for a second interview for a clinical trial at MD Andersen next Tuesday. I hope I get accepted. It is a stage III clinical trial and the first two rounds had staggering success at Mayo and Johns Hopkins...part of the success is obviously because they are tossing in EXTREME counseling and physical monitoring for 13 months = although the course of drugs is only 12 weeks. (((another interesting thing as in the beginning antidepressants were never given for longer than 90 days max- now they have people on them for years-that is not what they were designed to do. They were developed to get people to a place where they could deal with whatever was bothering them-they were never to be a cure but a bridge- if you dig down in the small print you will see that is true today...all test results for them are only based on 90 day max trials))) anyway-Even the damn placebo works with that kind of support. They do not want it to fail for if they can offset the bad brain effect they will have a billion dollar blockbuster...which of course will not work as well on open market because nobody could possibly afford the support that is offered through the clinical trial.But they will have the stats to back it up. It is a tangled web but for the first time in my life I am willing tohave my blood and body checked out from head to toe once a month and then have top shrinks from Baylor (they are handling the emotional part of study) check my psyche! I will keep you posted as I won't find out if I pass into the trial until this next interview. They have very narrow parameters on who they are allowing in. Of course, since that helps boost the success rate. My onc should be proud of me since she is the one who kicked me into gear to stop smoking when she said at the very first visit- breast cancer will not be what kills you...you have a very low stage, grade, etc---but your smoking will. Why that hit me after all these years I do not know but it did and for that I am grateful. Oh yeah, I have another prescription from her for Chantix. hahahaha. Quite a little collection I have going right now. I am not opposed to medication as it saves many lives. It just has to be based on fact. Phew- had to get that off my chest it has really been ticking me off. I don't like having to think so hard:)
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annettek - Bottom line - Doctors don't like it when we know things about our treatments and the meds they want to give us. Why they don't want to do a simple test at our request is beyond me. That and the fact that we know our bodies better than anyone and they should listen ever once in a while to what we have to say. Incredible what they could learn from us. They forget we do have a say in what is done to us and what we put in our bodies. We are not stupid robots and do things they want upon command.
Hate all this crap. Didn't ask for it but have to deal with it.
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Lynn,
Hang in there. Did they tell you when to expect results? We are all with you and hope all is well...we have all been throughout the waiting and I think it is one of the toughest parts...the wait to 50 posts is tough, just use them up each day and you will get there soon!
Day 2 down still ok minor side effects, now for the dreaded day 3-4.
Nite all. Thanks for the hugs and tips.0 -
Wow missed so many posts got to remember to refresh that page!
Elimar will work on avatar tried before but did not work, may be iPad thing...
Anyone heard from Paula?
Jo happy no mets so sorry for the lung damage, lung and heart damage for the rads is high on my fear list as well.
Hugs to all,
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Just joined this forum. Cancer free for almost 6 years. Triple positive, and one of the first to be on herceptin. Hated chemo - threw me into abrupt menopause at 48. Was on tamox for 5 years. Opted for bilat mastectomy - then waited another year to have tram flap. Looked all over the internet for a thread on early aging after chemo and found none.
Love my onc, but he sluffed off my concerns re early aging and feeling like I lost IQ points. He feels I would be aging anyway. But, like many of you, I looked 10-15 years younger than my age - now look my age (57). I eat pretty well, exercise alot. But even after 6 years, I have less energy, am less "on the ball", and look (and feel) haggard.
BTW, hair grew back wild and curly, then relaxed into gorgeous straight thickness (I never had hair so great), then returned to thin (even thinner than ever) hair, which I now "enhance" w/minoxodil (works pretty well, too).
I know I should be grateful to be alive, and I am, but damn this disease. And damn the "cure".
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Farm, first of all, welcome .. I don't think I met you before. Should we have a welcoming party for all the newbies? I haven't been here for only a few days and it seems I saw many new names in the list. There were lots of comments to me, and to those I'd say please please PM me so I can answer privately because when I only come in one or two nights a week it's really hard to go back and read everything but I want to answer anything addressed to me and the PM method would work best.
The main reason I come here week after week is to feel a little connected with all my sisters, maybe help someone new, and to let all know that life can be very very good after cancer. I wish I could come every day and stay current but my work schedule jsut doesn't allow for that. But to anyone new coming in, know that you are in good place where we're try to help or try to make you laugh. Eli, not trying to take over the moderator's role, I just want to reiterate that for all new people coming in. And for those, we have some really cool parties now and then with ... well .. I don't want to spoil it, but ... sometimes ....
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oh my....is that not insiration to go back to the gym?!
I still say you folks should come to Halifax for your treatment..with the exception of the surgen I put on the fire, of course. My radiatiologit is into meditatoin andmindfulness and would not talk about my cancer until he had ascertained how I was , gave me the opportunity to talk and cry and then he read me all th einformation, drew me pictures and told m what it all meant. i had done my research as well an dhe was happy ot have someone in his office who cares about ther health.(google the name Dr. Rob Rutledge...and the Healing Circle")...he looks at the whole person. My oncologist was the same...read me al lthe notes again, explained them from his perspective and was delighted I had done the research and knew what protocol he was likely to do. he even suggested I go for a blood test toe ensure I was menopausal, even though we had decided to do tamoxifen. Turns out everything is indeed menopausal...EXCEpt my estrogen level...coincidence? I don think so actually!
come to canada all those who have had crappy dr.s be mean to them...I could adopts you as my family!
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Sandee, I already live in Canada, but I'd come to Halifx because it's so beautiful!!! You live on the edge of the world....
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{{{JO}}}} so sorry about the radiation damage. I still have a raspy voice (started day 3 of tx) and the RO says, no way rads did that. Right. Been putting off going to the ENT because I am sick of doctors right about now. Hold his feet to the fire and blast away!
HnS - I am a GREAT procrastinator. But the cruise put a dent in the savings so I am doing our taxes this weekend. Ugh, hate it.
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Sandee, the holistic leanings of your docs sounds good. We are whole people, not just a walking breast with cancer. Too bad so many of them pooh-pooh things even of a mild alternative nature. (We've all seen or read about docs who don't even care to check our Vit. D levels.) I think more doctors need to do "active listening" too. I know I like feeling like an individual and not just a number.0
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Welcome Farm - As you can see, there is a great group of ladies here. Hang out with us - it gets interesting at times.
Marlegal - What a nice picture to look at first thing in the morning. That's all I'll say about that.
BarbaraA - Amazing how rads can't do any harm to our bodies. Not supposed to even burn or get itchy rashes. Humm! Had both of those. Now this. I am so sick of doctors too. At least I have a little over a week off before the lung specialist and then 2 weeks before the surgeon. I was hoping for a least one month with no appts. Right! Not going to happen now. Knew I had my 4th followup with MO before my cruise. Was going to take orders for rum cakes from the Cayman Islands LOL.
This too shall pass and like goes on. Well, I am going with it.
GOOD MORNING MIDDIES!
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Jo--I always like your cute pics! And Marlegal--yes, that was nice to wake up to!
Welcome Farm! I'm going to send you a pm about the tram flap!
I'm so thankful my oncs take their time and explain everything to me. My MO is known to be running late, but no one minds because we know it is because he is taking extra time with someone who needs it. We've all been there with him!
Happy Saturday!
Tina
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Tina - That picture is what I am usually like. Carefree and fun. That is my goal - to get back to that.
Promised myself I would stay positive about this recent issue - not gonna let it get in my way.
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Hi ladies! Sorry I dint get online last nught but it was a bit of a bmmpy evening and by the time I got relief I just wanted to sleep. Bottom line is WHY OH WHY am I so dang stuborn? I laid there like I did until I called the tele nurse. Once I got a new antinausea pill it was like night and day. So glad I did wait too long. We live in a small town and the drugstore closes by 10pm. Today is going better. So I know what to look for. Thanks girls.
Jo I'm glad that it shows no new cancer.
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Paula - Glad to hear you got some relief . I know all about the nausea and it can be awful.
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E-loving Betty this AM-she's so cute!
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I think we are all stubborn in our own way. We try to do it on our own. I thank God for you all that we have answers by you already going through this. Trust me it still hard but at least we know what to expect. 2 days down and we are suppose to have snow on my DR appt day. I am praying I will be able to get there. Hand in there.
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lynniea - Keeping my fingers crossed you will be able to make the dr appt.
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Hahaha - I read the last few posts before looking at Marlegal's picture. I thought it must be a picture of a cute baby!
Barbara - I ALWAYS kick myself for procrastinating so much. It's never as bad as I imagined it would be, and it's a HUGE waste of energy. Taxes are probably the crown of my procrastination dis-ability. Well, this year you've got some motivation! I am de-motivated because I owe so much! Oh, yeah, and putting off going to the ENT is exactly what I would do...
Paula - glad you nipped that nausea in the bud. I hate taking medicine, but it's great to have something when you need it. In fact, I kept all of my leftover nausea pills from chemo, and I've needed them a time or two.
farm - Welcome! Yes, I've decided oncs lie all the time. Mine said joint aches and pains were not a SE of AIs (obviously, the makers don't list it as one, so it doesn't exist). After that ridiculous remark, I made a note to myself to take what she says with a grain of salt. I think the chemo knocked the hell out of me and it's going to take a while to recover. I'm sad to hear you say you still feel haggard even though you exercise a lot. I told my ex that I AM exercising, and I feel pretty good the rest of the day but that the next day I wake up and I feel just - as - tired. Like I haven't exercised at all! When am I going to experience the CUMULATIVE effect of all this exercise? Ever? Nothing to do but keep on keepin' on and expect the best, I guess.
annette - thanks for the Big Pharma input. Keep it coming - need to hear what I need to watch out for! I hope the DIM does the trick for you. My onc doesn't test most things, either. I've got to make an appointment with my GP so I can have him keep an eye on things I'm concerned about - I guess if it doesn't fall under "cancer", my onc doesn't care. But I DO care about my liver function, estrogen levels, etc. She did test my Vit D levels, though, so....woot!
lynniea - hope the snow stays away until after your doctor's appointment, and I hope you get good test results. Stay strong!
Elimar - I'm loving Betty, too. Reminds me of the good old days...
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When I got back last night from the surgeon I was so upset at what he had to say about the test results. I realized later I did not ask questions - specifically how the lung changes are related to the burning., I emailed his nurse three questions I had and ask her to get back with me next week. Well, this morning I had an email from her - she wanted my phone number to give to the surgeon so he could call me and further explain the results. On Saturday of all days, he did call and told me everyone who goes through rads will have some lung changes - it can not be prevented. Mine are mild and I should not be concerned. No significant damage has been done. He can't figure out how the burning sensation and the lung changes are related. That is why he wants me to see the lung specialist and why he is doing all this testing. He wants to find out and is not going to give up until he does get an answer. I tend to agree with this plan - he is not one to "over test" but will not leave you hanging either. Whew! That was alot of info.
Would have been nice if the moron RO would have told me this in the beginning. Well, he is going to hear about it.
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Know how you feel, jo. I got truncal lymphedema and a pain syndrome from rads, had to have a mastectomy to stop the pain, Rad Onc didn't mention it because "it only happens 5 to 10% of the time, not often enough to mention to everyone." Gotta love how they decide what to tell us and what to hide from us.
As far as waiting for docs at appointment time, I don't mind waiting if (1) I know the doc will spend all the time with me that I need and (2) I know that I haven't been forgotten. I used to have a PCP who was frequently running late, when you checked in at the window the receptionist would tell me how far behind the doc was. When the nurse took me back to the exam room she would tell me how long to expect to wait. When it got close to the time I was told I would wait the nurse might pop in and update me with the wait time if it was going to be longer. I never really minded the wait since I felt like I was still being cared about. At radiation I often waited for over an hour while people who came in after my appointment time went in before me. No one ever said a word about the delays, except for one day when one of the workers said "Oh, you are here. Didn't think you were here." WTF? I had to swipe a bar code and the computer displayed my name in large letters for all to see. How could they not know I was there?
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JO--Thank you for sharing all that info. Having recently finished rads I find it all very interesting! (I think we both were on the Oct. rads thread?) It doesn't sound serious yet it is good the surgeon wants answers. He sounds like a great doc--he could teach that "moron" RO a thing or 2!
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JO that actually sounds a bit more positive. I hope it is superficial for you.
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