August 2010...anyone starting chemo besides me?!
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Lady- i think it is because they say NOT to cut your cuticals (have no clue how that does anything to the lymph system but it does) most people ya know push back and trim their cuticals when doing their nails...
Rachel oh wow that def by far is longer than mine!
calamity- whats the CA125? Yeah i hate gettting my ct scans i've had 3 since finishing chemo and i think to myself how can all this radiation exposure be good! Maybe if you explain you were menstrating to your doc they can retest you and go off those results???
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The CA125 is a tumor marker bloodtest. They do it every 3 mos and then every 6 mos. Unfortuantely it seems as if it's not very accurate. It's just a "tool" as my doctor said - many things can cause it to be elevated.
I guess we wait for the bloodwork and then go from there. I still have three mos to decide about the scans.
She did want me to have a mammo and pap tho - UGH on the mammo. Glad I have that one remaining (albiet smaller!) boob on the one side to anchor the bra, but wishing I'd just had a bi-lateral and had it lopped off. Guess it' s not too late!
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Cal: Why are they checking your CA125? Are you having symptoms? If it does come back elevated, ask for a 2nd blood test before you agree to any scans because like you know, it can be elevated for all sorts of reasons. And, not to alarm you, but CT scans don't necessarily pick up ovarian cancer. I had just had a pelvic CT in Dec. which was fine; then I was diagnosed Stage 3 ovca in February! A pelvic ultrasound might actually be a more accurate test if they suspect something.
Rachel: Your hair looks great! I had to shave mine off again at 6 months and it wasn't nearly that long.
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Good evening warriors-
I meant to tell you all when I went to survivorship clinic, I filled out a questionnaire and one of the items concerned being exposed to second -hand smoke and for how long. Well, both my parents smoked. It was an interesting point. What about you all? Did anyone grow up in smoking families? Just wondering. A little armchair analysis!
Did anyone see "Brides Maids" or "Hangover 2?" Good stuff, girls!
JSW: mea culpa!!!!! I though that was the stuff the Jersey Shore meat head advertises that is like a pill to help with fat burning!!!! No, there is nothing wrong with P90X! BTW, I love baby aspirin so why not?! I will put it on my list as well!
Sptmm: Deb, did your hotel workout partner, your son (!), make out well at the restaurant this weekend? I bet he did make a little something for himself! Good for him.
Tex: a lot of people cross the "ugly drunk" line and b/c they are so inebriated, they don't know!!!!!!! Tex, that is a common problem with the no shut-off on the drinking valve. At least you, with the help of some friends, were able to recognize that. My friend John was at a party in Stamford one night and on his way home, as he has the same problem you do, he flipped his Lexus into a bog near his home. He was loaded. He never drinks either but got going at that party and at least he lived to tell. He says his Lexus saved his life. Something saved his life.
BTW, on population, CT is 29th w/3.5 and RI is 43rd with just over a million vs the likes of CA w/almost 38 mil and TX w/25 mil. There is something wrong up here that bc is so high in such tiny states. Together we are a little over 1/10th the size of CA. It is in the water here, I am telling you.
Ginger: thanks so much. I need all the advice I can get!
Omaz: remind me now, post menopausal you go off tamox and onto an AI? I seem to remember that Arimidex is the post-menopausal tamox?
Lady: I did not want to use nail polish because my nails are porous and it stinks so I am sure there are carcinogenics in it so I swore it off! I broke down...I had to paint them and they look so pretty! I will take my chances!
Rachel: that is some growth!!!!! It actually looks styled and it looks good. It is nice to put baldness behind us!
We are supposed to have a beautiful end of the week here and I am soo looking forward to it!
Night, all-
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Lizzy - yep, only my onc does femara (letrozole) I think not arimidex.0
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Good morning everyone!
Ginger: Thanks for the hair coloring advice. I am thinking about coloring mine as I have that one gray spot on the right side that is driving me nuts. But I don't have a lot of time or money for myself so I am not sure I would be able to keep up with it, and the growing out process is really ugly, so I haven't made the commitment yet. I will definitely keep you in mind for advice if I decide to take the plunge!
Tex: You mentioned your scans, how's things going with you? Everything looking good? I know you are healing well from the surgery, what is the next step for you? That's great about taking some classes in the fall. Probably better to start off with just a couple of classes, get back into the swing of things slowly.
Lizzy: He made $50!! Funny thing...unbeknownst to either of them...both my sons were at the same bar on Sunday night. I was talking to my oldest son yesterday and he was telling me how he went over to Ocean Beach on Sunday night for his friend's birthday. Turns out, he was at the same bar/restaurant that my youngest was working in. My oldest was in the front drinking, and my little one was in the back packaging up beer bottles for returns...LOL! Anyway, Kieran came home last night, he had a great time.
Cal: Sorry you have to deal with all this anxiety again...it is just a part of our lives now, nothing we can do but just try to breathe and calm ourselves down. Did the onco have any ideas on an alternative to Tamox for you? What did they think of the plan you have worked out with your naturopath?
Rachel: Your hair looks great!
JSW: That is a really interesting article, thanks for posting it. I am definitely going to ask my oncologist about it. I don't like to take medication, but I could add some baby aspirin it seems like that is relatively harmless and it does have other benefits too aside from preventing recurrence.
Omaz: My docs said they will wait a year without periods (which for me wasn't until January of this year because I had that extended period all the way through chemo) and then test me to see if I am in menopause before they do the switch. But they didn't say which medication I am going to switch to...have you done any research on them..any differences between Arimidex and Femara?
Okay ladies..I hope everyone has a great day. I must get back to work now.
Debbi
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I was told they check the CA125 every time they draw blood, which is every 3 mos, then every 6 mos and then once a year after a few years. I was told at the beginning that it's routine and that it's used as a "tool" but was cautioned that a positive doesn't necessarily mean cancer, since different things can elevate it. It's often used for ovarian cancer, but it can also pick up breast cancer mets.
I know a ct wouldn't pick up many things-in fact, it can't even pick up a tumor under 1/2 cm....that's why I'm reluctant at this point to have scans done.
I just hate being thrust back into the world of being a cancer patient after having a sort of break....
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Debbi =- she didn't even approach the subject of the tamoxifen . I think I went in there looking and feeling so great that she didn't want to rock the boat!
I didn't get a chance to discuss with her the herbalist program or the osteopath, but I did mentioned that my osteo did bloodwork and my WBC was only a 3.3. She wasn't at all alarmed, just said that is really common even after chemo is done and since I haven't had so much as a sneeze since last year, even when I've been exposed to tons of illness and flu from friends and family, she wasn't at all concerned. I think I just need to find a way to live with the uncertainty instead of IN it.....
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Cal - I think for me they tested the CA27.29 which is supposed to be more specific for BC. My onc only did it once at the beginning that I know of.0
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They did "tumor markers" on me recently when they were looking at the spot in my hip and couldn't definitively rule out mets, but didn't think it was cancer. I don't know which ones the onco did, I will have to check my blood work. They came back elevated but still within normal range. The onco wasn't worried as she says they will go up and down randomly. So, we decided to take a wait and see approach and will go back for scans again at the end of the summer to look for changes.
I think the key is to understand and accept that we will always be breast cancer patients. I think once we accept this we can put it in its rightful place and not have it be such a large part of our lives. I am getting there slowly.
Debbi
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Sptmm: recently my doc said to me "Liz, you will always be a breast cancer survivor now." It does ring true. We *will* always be bc patients, Deb, you are right.
Calamtykel: you said it...learning to live with uncertainty, not in it. That is what it is all about. Best of luck on the results.
More later, girls!
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Cal I'm sorry you are stuck in another round of waiting. That is interesting that your doc checks the CA125, I have heard that a lot of docs don't check that or the 27.29 because they can vary so much randomly that they are not a very sensitive measure for detecting recurrence. My onc has not said anything to me about blood tests but since I am still on herceptin I am not sure if I am really to the "follow-up" phase yet since I'm still getting treatment. Anyway, I hope you are able to work with your doctor to figure out a schedule of blood tests and scans that will be appropriate but will also allow you to live your life without too much worry.
Rachel I think your shaggy hair looks great! It is getting so long, I can't wait for mine to be that long!
Lizzy Interesting about the second hand smoke thing. I grew up in a totally nonsmoking household and I have never smoked either. So my exposure to second hand (or first hand really) smoke has been pretty minimal. Also my husband and I went and saw the Hangover 2 this weekend. It was pretty funny though I thought not as funny as the first one. I really wanted to see Bridesmaids but my husband totally refused! And that is funny that you thought I was talking about some fat burning pill! I am definitely not interested in anything like that! I'm just trying to keep a healthy diet and get some exercise in.
Debbi Yeah overall I feel like I am already taking plenty of pills every day between tamox, vitamins, etc. but the baby aspirin does seem like a potential benefit for relatively low risk (though of course you want to check with your doctor since for some people aspirin is not recommended). I can't remember if you are also on tamox but I read a thread on the forums here that suggested that the blood thinning properties of aspirin may also help counteract the slight risk of blood clots from tamox. And as the article and my onc said you don't even need to take it every day, it seems that 2 or 3 times a week gives a good benefit.
Anyway speaking of tests and scans I am off for what feels like my one millionth MUGA this afternoon. Actually I think it is only my fourth but at least I have the routine totally down pat! So far my MUGA scores have actually gone up slightly each time so I hope the trend continues.
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Lizzy, my parents both smoked. My dad quit when I was around 11, mother still smokes.
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My dad smoked as did lots of people then and it wasn't a go outside the house or car like it is now. I have our old coffee table... burns and all!
I had my post tx MUGA last week and will get the results at my appointment today, fingers crossed. Insurance is refusing payment saying an echo is good enough, phsssssssst.
Happy Wednesday! Glad some of you enjoy my fat nose. (c:
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Love the fat nose!!! I have only been getting ECHOs for the year on herceptin. My dad only smoked cigars.
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Oh thanks calamity- i had posted in another forum about testing tumor markers because my dr does not, he graduated @ the same time as my dx so he has a lot of the "current information" on b/c and he told me they dont even teach about testing the markers because like you pointed out they are not all that reliable when outside things can affect it. He said when he was doing his residency one of the head drs was testing patients for them and he asked what that was all about, and was told some of the drs that were doing them still do while others have stopped.... Some people swear that they have been accuarte while others say no...
Debbi- thanks for asking, my dr called and left a message saying the scans looked good but when i called to clarify he was out of the office and he hasnt returned my call as of yet. I see him monday so i am not too worried about it... I think its the same as last time "stable" so i am not stressin, i think if there was progression he might have said something else LOL Yup healing well after surgery and rads- i am not usre whats next for me cept continue herceptin, zometa and tamox
Lizzy- Yes i grew up in a smoking home until i was middle school aged my parents smoked indoors- then they got the message that second hand smoke is bad and they started smoking on the porch
(btw my mother smoke while pregnant) We went to see kung fu panda 2 this weekend but i totally wanted to see bridesmids! it looks hilarious!!! I will wait to rent hangover 2 though cuz i know i'd like to watch it a few times...
jsw- oh now i know what she's talking about, i just recently saw the comercial for that- when you first listen to it it sounds like a exercise program but turns out its a pill- maybe its call trim in 90 or something that or trim90x ... no clue but it had me confused LOL Good luck with your MUGA
omaz- tech i've been getting only echos too, but when my nurse tells me she says "oh you're due for your MUGA" but when i get to the hospital they do an echocardiogram... not sure the differnece LOL
About cosmetics- i know that they (by they i mean the talking heads on everything cancer lol) say that some things in cosmetics and other beauty related stuff "may cause cancer" or is "linked" to cancer. Which i call BS on- i NEVER use makeup, the only times i've used it is when my sister in law wants me to look nice for something and thats like once every 3 years LOL, i dont do lotions often, i just basically wash my hair and face LOL. Although i do enjoy aveeno body wash.... Sogo ahead and paint your nails Lizzy LOL i doubt it really caused our breast cancer!
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Well, I guess as she said, it's a "tool" - they keep watching and if they go up and up and up they might order scans. I'm still on the fence about having "routine" scans. All that rad can't be good, but then it could be beneficial in early detection. Interestingly, the Sloan Kettering site says no, that scans shouldn't be done as follow up to earlier stages BC.....seems like everyone has their own stylistic differences!
I'm concerned my markers are going to be up because I read that inflammation can cause it - I'm in the middle of a heavy period right now and my gut feels so crampy and uncomfortable. So we'll see - tomorrow will tell. Maybe I'll just take the kids to the lake tomorrow and try to forget about it!
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calam- My onc doesn't do scans unless there are symptoms either and does monitor tumor markers. My first post tx visit is today. It's kind of weird to be done with the hard core fighting. I feel somewhat like a slacker, like I should be doing something still. I am on Tamox but... anyhoo, I don't know if this makes any sense. Hang in there!
liz- I agree with TR, paint those nails!
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about cosmetics - what we're trying to avoid are "xenoestrogens". Those are fake chemicals that act as estrogens in the body. We've all heard to avoid melted or hot plastics and such - well, it's the same kind of thing. certain chemicals AND EVEN NATURAL SUBSTANCES such as lavendar and tea tree oil can increase estrogen artifically in the body.
I've switched to using Dr Woods liquid castile soap for shampoo and body wash - I love them especially the peppermint and they are really reasonably priced (from Iherb or vitacost). Once my hair gets longer than I'll switch to a shampoo that will leave it "prettier"
but for now with my short do, it's working well.As far as makeup, I do use almay powder, even though it's not all natural or organic. I did try an all natural kind and it was awful -it stuck to my face and showed every wrinkle! I just use regular mascara and eyeliner. There are natural nailpolishes by the way - I keep meaning to get my DD some!
I think it's just about reducing exposure as much as possible without going crazy!
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hmmmmm intereststing
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CA125 is the marker they check for ovarian cancer. It is a good marker for some women, not as useful for others. My onc told me that bc doesn't have a similar marker; i.e., one that is actually pretty accurate and useful. He's not checking any markers on me for BC; but the gyn onc is checking CA125 for the OC. The CA125 is great for oc, when it works. But I wouldn't worry about a little rise in numbers. The women I've meet in my oc group who had recurrences, their CA125 levels were in the thousands! (normal is less than 34)
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My onco also doesn't test tumour markers. In fact, it doesn't seem to be protocol here in Canada--or at least with people I have spoken to. My onco just said that they would investigate any issues/concerns as they came up--but no more scans at this point.
I have come to the realization that we will always be "cancer patients" -- whether or not we are in active treatment or not. Getting through all these tests/scans/follow ups is difficult. When my appointment comes up at end of July--I'm sure that I will be very anxious awaiting results. Hoping that my many months of meditation will come to good use at that time!
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Adey: how was the muga? Let me know your results. I am hoping you are ok. OMG...forgot to tell you...this APRN at the Survivorship Clinic reminded me in no uncertain terms Adriamyocardial infarction (!!!) can cause heart problems 20+ years down the road! I so appreciated him reminding me and the way he delivered the news...spooky dooky!!!!
Rachel: speaking of meditation, I have never been good at it. Again I am on the topic of Survivorship Clinic but I met the nicest woman and she shared her secret on how she finally became good at meditation. She said she would envision herself in a circular room, sitting in the middle, and there were doors all around the room (a carousel enclosure comes to mind) and each door represented a thought. She commanded her mind to keep the doors shut and I have been using that technique and it works. I don't know if I will ever be great but I am doing better at meditating.
As for cosmetics and such, I never used face powder or liquid in my life but I do use Lancome eyeliner, mascara and, as I told you all, I am nothing short of addicted to Lancome Juicy Tubes! I guess the nail polish had me worried and not so much about xenoestrogens but about just other items ingredients that could cause a new primary cancer. In any case, I have to pick my poisons and I choose nail polish! Soon enough I will be drinking and then inhaling exhaust pipe fumes etc... where will this madness end?!??!
Tex et al : on smoking, up until 8 I was in a 2 smoker house and from 8-22, I was in a one smoker house. I can even remember smoking on the Metro North bar car! Man, am I glad they cancelled that mess! It looked gross...just a plume of smoke seeping out the doors at each stop. I could not take it!
They just don't know what causes this. I am sure some day they will figure it out and I hope we are all here to receive the news!
Did you all hear about beta blockers? Apparently they are examining those on beta blockers are getting dxd earlier and those who are on betas through chemo have less recurrence.
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I don't think my onco does tumor markers on a regular basis. I didn't want the bone scan that would have given them a definitive answer on the "spot" in my hip. At this point I feel like I am glowing and I didn't want any more radiation just so they could further investigate something they didn't think was cancer but couldn't be positive and because of my cancer history they felt like they had to investigate the heck out of. The tumor markers were like an extra added piece of the puzzle. When they came back within normal range, the onco felt comfortable with the wait and rescan approach and so did I. I don't think they would have done it otherwise.
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MUGA results... ticker okay. Was it an APRN that reminded you or a PITA?!
Good meditation tip, I find it difficult to quiet my mind too.
I remember flying when you could smoke on planes, blah.
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Lizzy: Great minds think alike; I was just reading the article on beta blockers. I've been on them for years, but the one I'm on is not the most effective in the BC study. So I'm going to ask my doc. if I can switch to the other one used in the study. Every little thing helps, I guess.
On being a "cancer patient" forever: I was talking to a friend the other day who is a non-Hodgkins lymphoma survivor of about 10 years. And we actually came to the conclusion that we are glad that we are cancer survivors because our physical symptoms don't get brushed off like other people's do. If we tell our doctors we have bloating (an OC symptom) or whatever, it gets attention. Better safe than sorry is sort of the conclusion we came to. Yes, it can be scary as we await test results, but I feel like we have a leg up on finding problems early and nipping them in the bud.
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thanks all - glad to know that many of your doctor's don't even bother with this test! I decided I'm going to take the kids to the lake tomorrow and then call about the bloodwork later in the afternoon - it's high, I"ll have them retest when I'm not having my period.
Right now I"m not real keen to have more scans. A CT is an awful lot of radiation - I read that it's equivalent to that of a Japanese Hiroshima survivor (of course, it didn't say how far away, but still...) There are ways to detox radiation, but some radiation stays in the body forever. I've done some radiation detox through my osteo and herbalist, but there are no guarantees....and I always wonder about cancer patients who have recurrences (meaning all kinds of cancer, not just BC - I know many times CTs must be prescribed every couple of months for some people to watch the progression of disease....) - since most people who get CT's regularly have cancer, how do they know exactly how many times cancer is caused by the CT exposure.
Right now I just want to play it by ear. I know my doctor is being overly cautious because of my tamox issues, but we'll have to see. She's covering her bases, I guess --
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I found this awesome article on Vitamin D and studies that were done. REALLY good stuff! I had my D tested and it was found to be very low - I'm on 5000mg per day as per the DO's orders, to raise it to the correct range.
http://www.vitamindcouncil.org/health-conditions/cancer/breast-cancer/
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Cal - I can't remember if you did rads for your BC, I am thinking you didn't because of the mx - but I gotta say once I went through the incredibly long zaps by the big machine day after day I sortof gave up worrying about radiation. Rads treatment is so far over the top in terms of exposure I just had to let go. If you think about it when you get a chest x-ray it's about a count of 1 second of exposure. I had about 6 fields of rads treatment to the whole breast, and the counts ranged from 6 to 22, that's means the machine is on and sending out x-rays and I am laying there long enough to count to 22 slowly. It's daunting.0
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Good evening warriors-
You all are lucky who are on beta blockers! You are in the lucky group today. They say there is a direct connection. I am anxiously awaiting the study that says drinking a bottle of cabernet sauvignon a day is the best thing you can do to avoid recurrence!!!!! I know, a cure might come first!
Adey: he was nice but I was like 'man, do you have to bring that up!?!' I am so happy about your MUGA results! Whoot whoot!
Sptmm: TORNADOES?! Wha?!? I could not believe it. It was like 1 minute from the CT border. Just when we thought things were about to get meteorologically good, here we go now with this madness! Did you all get hail? I thought I heard reports about LI and hail. All I know is this past January had me thinking about moving to FL. I am happy with anything but snow!
Omaz: are tumor markers only for people who have lumpectomies? Just wondering. I don't remember hearing anything about that. As for the weather, it may be hot in AZ but look at what the rest of us are dealing with!
How are things going with your personal trainer? I hope you are enjoying it. I remember once years ago when I taught step I walked into the gym and there was a heavy set guy that fell victim to a jerk ass trainer who had him stepping on and off a flat bench. I walked over to her and straightened that situation out. I think she was getting a little kick out of trying to induce this man to have a heart attack. There was so much more I wanted to say that day. Alas, I hope you are enjoying the training and the moral of my story is if you are not, switch off, find a new one.
Tex: I cannot believe that I totally forgot you just had surgery. You just bounce back and march forward so, sorry, it is easy to forget you just had a huge surgical trauma! I know, no excuses, and, yes, I am ashamed! In long, how are you? Are your scars healing? I noticed since I increased protein consumption (carcinogenics via steroids!), my wound site is really showing signs of healing. I should be in surgery by mid-July...so happy.
Sweet dreams to all and to all, a good night
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