August 2010...anyone starting chemo besides me?!
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calamtykel my mother developed BC at age 76. The OBGYN kept telling me not to worry because of her age when it developed. Here I am though. libray lil0
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Cal: It happened to me today - I got called Sir!!! I was at the car wash and the girl taking my money looked at me when I pulled up and said "how you doing sir?" and when I answered, she realized I was female and said "oh, sorry, maam". Fortunately, I laughed instead of cried.
Rachel: Congrats on your good news.
Omaz: I'm sooooooo jealous! You look like you are at least 6 months out instead of 6 weeks. Wow!
Lizzy: I'm sleeping a lot too, but would sleep more if I lived alone and could do it without feeling guilty! I sleep 7 to 8 hours a night and then take at least a two hour nap in the day time. I figure if I'm sleeping that much, my body must need it, so I just give in. I'm just glad to be able to sleep. I suffer with insomnia at times.
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Thanks Lady - I took a picture before and was comparing it to the new one and I could tell something was different - finally it dawned on me that I don't have eyebrows, or just a bit and that made me look so different.0
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Rachel- that's great news, I'm sure you're so relieved.
It's really amazing how much I (and I'm sure all of us, actually!) have learned about our bodies, genes, the environment we live in, cell structure, etc. Crazy. Didn't think I'd ever need all this info, that's for sure!
I'll be off the board for a week. This weekend I leave for my girls trip to Domincan Republic. Hope it's okay, it was pretty inexepensive! Hope we're not in some dive. I'll be the slightly bald lady trying to stay out of the sun!
Stay well ladies. Talk to you next week!
Sweeney
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Have a GREAT time Sweeney!0
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I'm kind of confused about something. I visited Lifemath today and plugged in my info - tumor size, grade, nodes, chemo, etc. I did it with and without tamoxifen. There is only a 4% difference over the course of 15 years.......
I'm taking my tamox - but I'm afraid of being any medication for five years. I know many women choose not to do the tamox.....anybody else having doubts? My doubts aren't big enough to quit, but they are there. My alternative medicine doctor insists that tamox is a big scam; that it does more harm than good.....but my oncologlist says it adds 15% protection - but that's not what Lifemath says. If you read the side effects, they are very real, and those are the SE's we can feel and notice? What about the ones that remain unseen....... ARGH!
Just wondering if anybody else is wrestling with this in their minds...........
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I have a question for mx ladies, what do you wear for a mx bra? Is it comfortable? I have 5 reg. mx bras 3 of them are underwire, and 1 sports bra. The sports bra is the most comfortable and it looks like a tank under my tops. When I look for this brand online they are $48. pretty spendy, so wondering what everyone else wears. Thanks.
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Good day chemosabes and radicals:
Waiting for the plow again...another 9" in CT....I am only pretty sure I am moving to a warmer climate...this is not settling so well with me anymore
Sweeney: I slept through your departure to the DR! This sleeping is officially out of control! I hope you have a blast. I am looking forward to fun vaca stories when you get back!
Texas: you are correct in that going to the extremes does not always guarantee you will not get bc or will not get a recurrence. I am sorry that happened to your cousin. It is an example of the tenaciousness of bc. More to this point, it sucks!
Ladyinbama: 7-8 hours is like a SNACK to me! I slept 12 hours last night! The VNA and my docs reassure me this is natural as my body went through a tremendous trauma and is now trying to recover. Thanks for reassuring me you would sleep more if you could!
Calamtykel: I despise the idea of being on a med for 5 years but the few percentage points it garners, and the fact that is suppresses estrogen, is sort of a big deal. I feel just like you do, believe me. I hate the thought of being on this thing for 5 years and why is 5 years the magic number? Why not 3 or 7? In any case, the person typing this did a bmx for a few extra percentage points so I will do just about anything....begrudgingly!
Iowa: since the bmx I do not wear bras, even when the TEs were healthy. I had a friend who used bras from a department store and made a little slit to slide the bones out. Another friend wore 18 hour Playtex, I believe? You have to play around with that. If you don't mind bones, I heard the Wonder Bra is nice and because it also has the option of the lifters which have a smoothing effect. Good luck.
Well, I am no longer too tired so perhaps I will clean the kitchen!
Good day all-
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Lizzy, the reason for the five years is because after that the side effects get worse and worse.
I asked my oncologlist about that also. That's why I'm wondering - we all seem to be okay on it now, but as time goes on, then what? UGH! 0 -
Cal - I thought it was 5 years because that was the period of highest risk of recurrence.
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Sue - I have not been wearing a bra. I could not stand the feel of anything pressing on the TE. I kept buying bigger and bigger sports bras until I thought - what's the purpose? If I'm buying so big, they are not giving me any support. So I stopped wearing anything ... even when I run
I've been reading other threads here lately and I copied/pasted the following for after my exchange. It may help you now:
--Nordstroms. Call first and make an appointment with one of their fitters and ask for someone who works with breast reconstruction patients. And call your insurance company first to see if they cover bras. Nordies can bill your insurance carrier. --
I also suggest you PM whippetmom. She is amazing with her info!
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Cal--I pulled out the information that MO provided to me when first diagnosed. It calculated the risk for relapse etc. My information related to relapse was 25.8% if I did nothing (no chemo etc) with combined chemo and hormone it reduced to 7.3%--the hormone therapy looks like it provides about 4.9% benefit. (all this info was over 10 years). I know my RO then provided some info on rads (as I had lumpectomy) but can't seem to find it--I know that it reduced my relapse also. When I looked on NCI website re: Tamoxifen and duration--it looks like it is 5 years based on studies done on the success rate etc. I know that Tamoxifen has lots of side effects--but remember--the companies have to list every single side effect that anyone ever had while taking this drug (I used to work at Pharma company that made Tamoxifen). Like any drug--it has lots of side effects--some may not even be known yet.
I don't think it is because the side effects get worse--it is probably more to do with the studies--all drugs can only be marketed for the studies etc that are done and have gone through govt/health agency approval. Believe me--look at any drug (Tylenol, Advil etc)--the SE list is pretty long (hence that little piece of paper that they stick in the box)!
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kel, I'm due to start Tamoxifen in 3 weeks and I'm going to ask my onc more then - I belive they said they are now following it with 4 yrs of armidex at MSKCC . I do know on another breast cancer site there are heated arguments between those taking and not taking tamoxifen. I didn't look too much into it b/c I wanted to avoid the drama. One thing that stuck with me though was one woman with metastatic cancer saying to those who stopped for quality of life issues that it was easier to make that decison when you still believed you had quantity of life. Once you are Stage 4 you need to take those meds and or chemo and deal with the side effects to try to stay alive. So it's not like I can opt out of tamoxifen and expect to have the same options open to me if I recurr. I understand it is a personal decision though.
Carolyn
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I also plan to do the best I can with tamoxifen and then the AI. My tumor cells were very estrogen positive and if any of them survived chemo and are trying to reestablish themselves elsewhere I want to keep the estrogen away from them. I desperately hope there are no cells out there but I just do not know.
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My tumor was 90% estrogen receptor positive and therefore I intend to take the Tamoxifen regardless of the side effects, unless of course they are absolutely debilitating. I tend to be a logical person, and the action of the drug as explained to me by the oncologist, is logical. Also I work for a group of OB/GYNs and the senior doctor has told me that the research on the effectiveness of Tamoxifen is solid. He didn't delve into percentages, but he said that the studies prove better disease free rates at the five year mark with Tamoxifen than without it. I don't tend to be a gambler, so I will take any percentage points I can get.
As for how many years to be on Tamoxifen my oncologist has told me that given my age (48), the most effective protocol is Tamoxifen for a couple of years until I am menopausal and then one of the aromatase inhibitors after that point. He said that there is now a lot of research going into what is best after five years and that hopefully by the time I get there, a new protocol will be established.
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I'm not really a gambler either--so Tamoxifen it is for me. I have taken it for about 3 weeks and have noticed a couple of headaches--but hard to say if SE or not. Other than that---not much else. I do know that some SE may start much later on--hoping that I will be one of the lucky ones. With all that chemo running through my body, radiation, scans, numerous drugs (anti-nausea, steriods etc)--what's something else to add to the mix!
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Omaz- - I thought recurrence risk goes higher the further out from BC you get? On Lifemath, the curve goes up higher and higher from the one year mark to the 20 year mark. I used to think BC was like other cancers- where five years = remission, but that's not what it looks like from the lifemath curve.....I'm confused. My path report says my tumor was only 70% er positive.
Anyway, I'm having kind of a down day. Sorta questioning everything and not doing so well. I still have this lump thing in my neck - waiting to hear about that and I guess it will be more tests...... Just want to sort of sit in a corner and cry today....
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Cal--one of the leaders at my bc support group (two times bc) said something one day when I was down--you didn't spend the first 40 years of your life worrying about bc, so you shouldn't spend the next 40 years worrying about it. I know....easier said than done....I'm not there yet in the "don't worry" opinion--but hope to be at some point. Have a good evening...relax, watch a funny movie. The other night, I couldn't sleep so watched E network and some show called "The Soup"--I honestly couldn't stop laughing--took my mind off the worry.
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Kel- sorry to hear you're having a down day... we all have those once in a while
I hate saying this but i am doing everything to "buy" as much time as i can cuz y'all know i am already in a different boat (i mean we're all departing from the same port, BC, though)
If the dr said sleeping on your head will give you a month longer than not i'd def figure out how!
LOL i just re-read my post and was thinkin why the heck did i use a boating analogy LOL
Rachel LOVE the soup!!! Also love Chelsea lately
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Oh did lifemath and it said my tx plus tamox would extend my life expectancy from 11 yrs (without any tx) to 21.9 years...
Although it didnt mention metastatic cancer,not sure how that factors in
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Thanks all - I watched Woody Allen's Radio Days with the kids - it's one of those New Year's traditions that we didn't get to this year! A good laugh made me feel a lot better. After I got off here my brother called me from his cell phone. He said he wanted to tell me about the kids that my kids and I made Christmas stockings for. Actually they turned out to be bags since there were too many presents for stockings. These three kids, 4, 6 and 8 have a mother who's a drug addict. My brother and SIL have gotten pretty close to them and try to spend time with them. They're really poor and apparently these presents were a huge big deal to them. It really made my night when he told me how excited the kids were opening them! God works in a whisper sometimes -- like a breeze and if you aren't paying attention, you might miss it. I know his phone call wasn't an accident and he really cheered me up.
Hope you all have a good night - oh, and I love that quote about not spending the first 40 years worrying! I guess the swollen LN brought it all back -- all the feelings from last summer. I'm getting better at beating those thoughts back, but I'm not "good" at it yet.
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Calamtykel: we all have those days. I have been so bitchy lately...I think I am just fired up about the dragging out of this process. My entire life is seemingly on hold.
As for going to lifemath, we seem to collectively be a group of women that liked being in "control" of our lives. Now this bc business does not allow for any control nor definitive answers etc... which drives me crazy. If I think about how seemingly precarious my existence has become because I can't map out everything like I used to, I will go bananas. You just have to stop looking for the end. You also have to stop looking for definite answers. I know, it is so much easier said than done. You have no idea how much I know exactly how you feel. This is something we can't control, we can't forecast and we can't get a grip on it.
I really believe in the merits of tamoxifen for us ER/PR+ people. I know it is hard to give up the reins over our bodies to the pharmaceutical industry but it is, for all of us, a somewhat necessary evil. Again, the reason most of us are so against it is because we like having control over our bodies etc... and now we have this pill we have to take every day. Kel-you said it yesterday: there is nothing easy or predictable about this journey but we are unequivocally on it, together, and I say put your seatbelt on and have a margarita...enjoy the ride!
I am concerned for you on the lump in your neck. Don't forget, 90% of the lumps in our bodies are benign. That is what was going through my mind when the absolutely incomprehensible words fell out of my doctor's mouth telling me I had bc. It still all seems so odd.
Texas: I LOVE Chelsea Lately! She is crazy. I like "The Soup" also. The guy who does Soup is on "Community" which is a sitcom on NBC w/Chevy Chase. It is pretty good. So how are you feeling these days? I hope you are doing well. I am so glad your move is done and your computer is back up and running. Good to have you back!
Sptmm: You make a very good point in telling us what your docs said about how we are all pathing on a trajectory driving us into the future and how txs are getting better each year. It is entirely feasible by the time we hit the 5 year mark on tamox, there could be a cure or something that puts us forever out of harm's way regarding the potential for recurrence etc.... We just don't know. Therein lies hope. Hope is for a better future, better txs, an end to the debilitating fear connected with this dx and long lives for us all.
We can't think about the end when there is so much living to be done. I am very much with every one of you, however, who is feeling worn down by this entire process and who are trying to figure out what might be next. It is only natural. I, for one, am looking for a break from the spookiness!
Congruent with my juvenile interests, and because it is snowing yet again in CT, I am watching "Nick and Norah's Infinite Playlist." Good stuff! I remember being in NYC at the Palladium and Limelight at 16 and 17 years old when my father thought I was at the library and then going to a sleepover!!! Good times but these kids in this movie are so subdued compared to me and my friends! Then there was the never-ending concert scene of which one of my favorites was Guns N' Roses, Metallica and Ugly Kid Joe at the Meadowlands! We rented a short bus to go so we could party on our way! I never saw a band get hit with so many tomatoes and other assorted rotten crap than Ugly Kid Joe! It was sad. Guns at the Hollywood Bowl was amazing...I was 18! I want to go back! I never wanted to go back until bc entered my life. Crappy bc.
Sweet dreams to you all-
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Lizzy you have hit the nail right on the head with that control theory. My kids will be the first to tell you what a control freak I am and I have struggled mightily with the loss of control. And still to this day I keep looking for the "end". But I think you are right, we have to stop looking for the "end" ...the end of chemo...the end of rads..etc. When we reach that "end" it is not over so there is disappointment. I am getting tired of the disappointment, so I have been trying to come to terms with the ongoing nature of this process, and begin looking forward to when it "slows down" as opposed to "ends", because I think that is as close as we will get.
The other thing that I think many of us are struggling with, or at least I know I am, is the loss of the safety net. Before BC I was in good health, nothing bad ever happened to me. So, even when the doctors were concerned about my lump, I just assumed it would be fine...because after all nothing bad ever happens to me. Throughout the beginning of this whole process I never feared cancer, because any health issue I ever had turned out not to be serious, so I assumed it was going to be benign. Now I feel like that sense of security is gone. Instead of assuming that it will all be okay, I have to allow the possibility that every symptom could be serious. I hate that feeling and I hate the worry. I want to go back to a place where I assume the best case scenario, not the worst. But I don't think I will ever get there..my safety net is gone!
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Lizzy thanks for asking, i am doing good for the most part- just anxious to speak with the surgeon... my oncologists office is setting up the appointment but i dont have one yet
thats whats making me anxious its like GET IT OVER WITH ALREADY!I totally was flipping through the tv and saw it was on but didnt want to catch it in the middle- I have a WEAK stomach and gag everytime i see her get the gum from the toilet! YUCK!
K this is me yesterday, sorry i have no clue how to post pics so i am trying every which way LOL
http://i6.photobucket.com/albums/y247/tbelmares/P1070865.jpg
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Keep tryin Texas!
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sptmm62... I hear you with the safety net... but even tho this isn't a small bump in the road, and the bump seems to go on and on, I think eventually you will feel safe again... time needs to pass and it will get better, as with every bad things in life, time does heal wounds.
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Ginger the link doenst work for you?
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Oh duh. I have anew computer and Flash wasn't installed. Now it works just fine! Interesting.
Mu old computer had been stood on by my friends 75 lb golden retriever and the right hakf odf the screen didnt work. Plus it was doing the blue screen of death twice a day. Now cmputer is nice except I keep hitting all the wrong buttons and sliding things around and not finding things in my windows explorer becase it all looks different. Just when I finally become proficient with my computer I need a new one. I would have been happy to keeo it for ten years or more.
Ludite here. Well not totally but a partial Ludite for sure.
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Texas: Looking good! Good hair growth there. The waiting stinks. Hope you get that surgeon's appointment soon.
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Calamtykel - I wanted ro respond last night but we went to see Wicked and didn't get home until midnight! Here is the link to the graph that I was thinking about for the 5 year recurrence thing.
If you look at the survival curves in cancermath.net each time a person 'dies' in the graph the curve goes down a little bit (cancermath is mortality not recurrence risk I think, I wish they had recurrence). If the risk stays the same over the whole time period then it is a straight line. I think of it like 100 people at the beginning and all are alive.
Of the original 100 people:
At 5 years 93 are alive (93% on the graph) and 7 have died.
At 10 years 87 are alive (87%) and 13 total have died
At 15 years 82 are alive (82%) and 18 total have died
between 0 and 5 years 7 die out of 100 at risk, 7/100=7.0%
between 5 and 10 years 6 die out of the 93 remaining at risk, 6/93 =6.5%
between 10 and 15 years 5 die out of the 87 remaining at risk, 5/87=5.7%
so it looks like the percent that die decreases over time. Please let me know if this is not right!
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