TRIPLE POSITIVE GROUP
Comments
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I didn't tell you guys about the article to alarm anyone. I always want to know everything about a procedure or a drug I might use so I thought you would be interested. I think all of this is very scary, and we have to take the good with the bad. We know all the bad things about chemo, but everyone does it anyway, so I am sure they will continue to use Herceptin. I think it is good to be educated before undertaking a treatment. For now I am opting out of everything post surgery. I might be dead in 5 months, but then I can be used as an example of what not to do. Who knows; not much data out there on the opting out peeps.
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Congrats Lago! I am trying to decide my date, also. My tumor was removed with clean but close margins in January 2011. BMX was February 28, with no sign of anything residual or anything, so I am leaning toward going with the January date.
I can't keep up with everything on here. My onc is testing heart ever three months currently.
On port removal, I had my PS do it when he did the fat grafting, as I thought I might have a better scarline. You can barely see it now.0 -
Nancedawg, I so admire your courage. I really did not want to do TCH,radiation or tamoxifen,however my family talked me into it. I agreed under one condition,if anyone of these treatments made me sick or if I had bad side effects I would quit. I have been lucky so far-very minor SE from chemo,no SE from radiation and so far Tamoxifen has not caused any issues. Now I wonder about the long term SE of all this..I am a lot older then most on this board,I will be 74yrs old in October..Many of the studies scare me and many give me hope. It is just a crap shoot...Bless you Nancedawg-my very best wishes .
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Chemo and se's, it just all sucks.
Some of it even makes us up chuck.
We worry and worry over each little pain.
But a friend called NED is what we hope to gain.
Her2 is scary and worry we should
The stress is taxing, but the drugs sure are good.
We now carry degrees and BC MD's.
We converse with our docs about procedures and fees
In the end we all hope for one little thing
A happy long life with a cure that it brings.
I could do this all day.0 -
Kayb, thay might spice things up.
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Love it Kay!!
As for Herceptin....I don't think age is an insulator. I have heart damage and I took Herceptin at 42. Maybe some day they will be able to tell somehow who will have heart issues and who won't. I think in the next ten years the heart damage numbers are going to go even higher UNLESS they find out 6 months is just as good as 12 and can lower the exposure.
It's a crap shoot.
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Well ladies....I'm 62 and started my Herceptin at 61 so guessing I'm at the high risk age but I am recovering so as many have said, it is a crap shoot! We do what we have to do at the time and pray for good results!
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OK guys u keep saying 60 is some kind of age heart tnhing---well I'm 67 so now what LOL Hopefully to me u just meant 60 only hahaha
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Ladies, loving the poetry. And, yes, once you start It's hard to stop! LOL. But it is FUN! And, we need all the free fun we get!
As for heart problems, .I am just waiting to hear about my echo. Won't hear til Tuesday. But onc won't let me even start chemo rehab up again. Oh well, it is what it is, and we have a weekend to enjoy. So have a good one. We just got back from my DMIL 90th birthday party. She has survived, bc, skin c, Colin c, and heart problems. Getting a bit frail, but, she's a fighter. I plan on taking lessons from her. Going to bed early, as three hour each way drive is a bit much for me right now. Much love.0 -
Hi Ladies....jes thot I'd post on a positive note. I jes had my MUGA...EF at 64%...same as 3 mos ago. I lost track of how many herceptin treatments I have had but think I am around 30 drips...am now every 3 wks instead of weekly, I am 57 (almost 58) and feel blest each morning when I wake. I know not all of us will/can tolerate herceptin, but I'm sticking with it for as long as my 'ticker' can handle it. Good luck, prayers and positive healing energy to all!
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Kayb - That was great!0
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OK i am getting concerned here I have only been looked at for my heart once and that is when I got done with Andramycin I know I spelled that wrong.. and I had to push my doctor for it. And as for cancer anywhere else in the body after my mamo and after some chemo already started no one ever looked in to having cancer anywhere else in the body I found that odd and upsetting so I brung it up to my doctor two different times and finally got tested for a complete body being done, that was the first part of march should I be looked at more? On a different note just curious how many have you smoked,drank , before dx ?
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Hi ladies...I haven't posted in a long while. Last chemo was Aug 13th, BMX scheduled for Oct 1st.
Discovered something which has me in a tizzy this evening. About an inch above my port (which I can clearly feel), I feel another knot or lump, close up under my collarbone. Could this be part of the port? I think I would have noticed it before. Could it be a clot? My fear is that is a node. Any input?
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Is your port on the opposite side from the bc?
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Yes. Bc is on right. Port is on left.
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I would ask your onc but it doesn't seem like the cancer would travel over to that side. Maybe have them check the port. There is tubing as you know and there could be some kind of blockage.
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Kltb04,
I have a small bump about an inch up as well. I didn't notice it when the port was first put in because I never really felt around the area. I think it's actually the catheter tube and it seems to bend upward and then under. Does that make sense? Ask about it though....
Question...my deporting will be done as a short procedure in the outpatient OR...do you need all the pre op stuff for that? Is it all hospital gown and stuff? Do I need someone to drive me? I heard some get it taken out in the office. Is that right?0 -
ang a lot of doctors don't scan at all for stage I. Most scan for stage III. I got the initial scans before surgery because there was time and my BS assumed I would have micromets in my nodes and be a stage IIIA. My liver keeps getting scanned because they did see some lesions there. They are pretty sure they are cysts but once they see something they keep scanning. At this point I wish they would stop. It's $$!
I was never much of a drinker. Typically Luminal B women are not big drinkers. I did smoke but quite almost 8 years ago. Not a heavy smoker though and quit lots of times in between.
Ashla my port was installed outpatient. You will need someone to drive you if they use a local… and they won't do the procedure if the person isn't there with you. They won't even let a cab drive you home. They should give you instructions but they will provide you with a gown for the procedure. I starting to get excited to get mine out. Hopefully late October or early November.
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Lago...
If all goes well...I'll be getting deported about the same time. I wanted my BS to deport me but he wants the outpatient procedure. Hoping herceptin number 17 is around October 15.
I had my sentinel node biopsy, tumor clip and port placement done last Halloween!0 -
Last October I got nipples (-•-)(-•-)
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kltb04 - Most likely it is what Ashla said - that you are feeling the tubing. I could also feel mine.0
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Here's a close up of my port from 2010 or earlly 2011. I'm real thin on top so it sticks out. I also have a kid sized one but you can see there is a bump to the upper left in the photo.
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I have that bump also...my surgeon placed my port very deep in my chest so that it could not be seen...and it can't, but, you can still feel that bump above it when you look for it.
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ang - never smoked , was a social drinker prior to a GI surgery in the mid-90's, now drink only occasionally. I could party with the best before I had two children eighteen months apart (in the late '80's) - then that went out the window, lol! I was either pregnant, breastfeeding or too tired to drink anything other than coffee for a long time!
On the cardiac risk, I think you also have to factor in what percentage of women would have had cardiac issues without BC treatment, particularly when you consider that heart disease kills more women each year than all cancers combined. My onc prefers the TCH regimen in hopes to avoid the combined cardiotoxicity of Adriamycin and Herceptin. I had a baseline echo, then one every 3 months, then a post-Herceptin one.
lago - your nipple icon made me spit out my coffee laughing!
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Special those are my recon boobs & nipples. Glad to make you laugh.
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Never smoked.
Partied pretty hard in my early 20's...then basically stopped drinking completely, (hubby doesn't drink at all, so what was the point? heh) until about 6 months before my diagnosis when I started meeting friends at a local Mexican place for happy hour. I love tequila, always have, and had margaritas 1-3 every Tuesday for about six months.
But I would say I went a good ten years before that with maybe 3 drinks total.
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I didn't drink much either. Only socially, and could go months without anything. Now when I have the occasional margarita or glass of wine, I feel guilty, which is dumb because I know I didn't drink myself into BC. Never smoked.
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Thanks ladies. And thanks for the pic lago. I don't know how I wouldn't have noticed it before when I was "feeling around" in that area - unless perhaps it has gotten kinked or shifted around - I do flop and toss and turn a LOT at night, lay on my stomach/side, etc...I am going to choose to think it is the port until my first Herceptin only appt Wed when I will see the MO.
As far as the other question right before mine - I drank not at all until I was 23, then for several years after it was just rarely, then I was pg/had young kids, so I quit for awhile totally. The last few years though I became somewhat the mommy drinker - a few glasses of wine at night to unwind, etc...and often too much on special occasions. I am such a type A personality, it was the only way I felt I could unwind. It has been a huge guilt factor for me because it is the only risk factor I can think of (besides the fact I could lose a few pounds). No family history, I never smoked.
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Drank a bit when I was 18, and yes, I date myself cause it was legal way back then. Then, maybe a drink every other month, if that, and for 40 years that would have been it. Never smoked, and no one in my family did, so no second hand smoke.
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Never drank anything but I did smoke yrs ago- I quit smoking over 20 yrs ago. My BS said that since I quit smoking so long that it was a non factor for BC.. Who really knows ?
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