TRIPLE POSITIVE GROUP
Comments
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Well, these tired eyes finally got to me reading today's messages. I read soltantio's first line just above as "I have never made love before" instead of "I have never made one before". For a few moments that left me wondering why cooking a turkey would make her think of sharing that info!
Of course, the sharing of that didn't seem weird at all because there has been so much shared over these past few pages :-)
Jenn0 -
OMG I can't catch up.
Moon u are slow, I learned it last week and I was amazed , unbelievable to me too.
And Lago I liked that linky--Iwas married then Nuff said on that one.
Oh I feel bad for all of u who are not poopin' like u should, thst is so painful I had that yrs ago--with a bsby or some operation ??? and it was aful--I hope u all find something to relieve u--I remember just using a suppository and that was good. But there are a lot of things now.
And sleeping well I still haven't figured this out--I try so hard not to take a nap so I can sleep better and sometimes it works but not always.
So this sleep thing is still a puzzle to me and I do take meds for it--I take meds for everything even to stop pooping--I'm sorry it sounds good but it ain't LOL And another thing I always had in the house was gingersle the one that makes it with ginger--that helped (the small cans)
Well it sounds like some are feeling a bit better and there are dark days--but they do get brighter.
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Moonflwr - thanks for the washcloth tip. My hair is about the same length or maybe even a little longer than it is in my photo (February 2012). Basically shoulder-length - so I don't know if that will work for me. I'm tempted to just take the scissors and try to cut off a couple of inches of it now because I know it's all going to go sooner or later anyway. My husband thinks he has a plan that will work.
The surgeon seems pretty adamant about this (hair washing/hair salon) but I don't want to keep impacting my husband's work with trips here and there. I have really oily skin (TMI!) and it's driving me crazy right now. I guess that's one advantage to chemo before surgery...
Also, Moonflwr, great news on your medical records being so handy! My husband would love that kind of access (I would as well but he's a tech guy and things like that REALLY appeal to him). I'm pretty sure my facility doesn't offer anything like that right now. I might be changing things around for chemo so perhaps I'll get lucky with that kind of online record tracking at the different facility (one that's closer to home).
soltantio - that's great that your mom was able to have the procedure back then and go on to be cancer-free for all those years. I always think about Nancy Reagan and her MX back in the late-eighties. She's still around to tell the tale...
For anyone who might be interested - here's a link to an archived article about her decision to have a mastectomy: March 5, 1988 - NY Times - http://www.nytimes.com/1988/03/05/us/nancy-reagan-defends-her-decision-to-have-mastectomy.html
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Yeah, I can go to any old place but I haven't driven yet and my husband doesn't want me driving on my own until I'm off the pain meds (and I don't want to be driving while I'm taking Vicodin every four hours).
His job is really demanding - especially this time of year - and he's already taken off quite a bit of time for this. I know there's FML etc. but there's also reality. I'll get it worked out. It's just a temporary glitch. It hasn't been washed since Wednesday morning and it's driving me temporarily nuts but this, too, shall pass.
Just one of the latest joys of the C word. And I know, I know... it's gonna get (a whole lot) worse...0 -
Re: Five Guys - I just checked their website.
I had no idea that chain was in California as well. If it's not in the Pasadena/Glendale/La Canada /Montrose/Burbank area then I'm clueless...
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Lee I bought the hair wash in the bottle with no rinsing thst is for people who can't wash theor own hair and it works pretty good--U just put it on and it soaps all up and towel dry it and it's great---I still use it sometimes when I'm having some bad days.
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Shore simple/total mx is the same thing. Here is the BCO.org explaination although I don't think it's 100% accurate. I had a modified radical on the left with only level I nodes taken granted he would have taken more if he saw issues with the nodes. Simple on the right with SNB (4 nodes) removed. Also they say something about both breasts and that's only if you do a bilateral MX. This gives a good description of why certain procedures are performed linky
Left had a large tumor in the posterior region and my BS though nodes might be involved. Right has what looked like LCIS… and it ended up being LCIS. If we had biopsied it before surgery I wouldn't have had the SNB on that side but we had already waited a long time so my BS wanted to get me into surgery
Saltantio I never cooked a turkey in my life. DH does it. I know he bastes it every 20/30 minutes and keeps the top covered in foil for a certain time then takes it off towards the end so it can brown. Stuffing… he just uses stouffers and follows the directions. I make him put mushrooms in it. I do make duck so I can offer this tip. If the wing tips or drum stick ends start to burn when the foil is off cover those areas with foil.
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LindaKR - thanks for the link.
Talk about TMI.... here's one for you. So if vaginal dryness during sex is a result of lack of estrogen, would the opposite mean estrogen is still running wild? I haven't had my period since Sept, 2011 when I started AC. I'm 42 now & not having the dryness issue at all. Of course I'm concerned the evil ovaries are up to no good. I asked my MO & she said its nothing to be concerned about, but that is her motto on everything it seems.
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cami - Do you have a picture for us today??
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shore1 - i haven't really noticed the vaginal dryness. I haven't had a period since april of 2012. When i was on taxotere i was a dry all over but since then it seems better. I am going to get a complete hyster though in april/may2013
To all those talking about "poop" - my half way point through chemo - may 25, 2012, my husband had a celebration for just him and i. Balloons, poster and some goodies. One of the things he bought me was a button that said "i pooped today". That was always the main concern during chemo. In fact i still have trouble with it. My last chemo was july 27. I woke up last night all the sudden constipated. Took my benefiber and coffee this am and back in business. I know TMI. I will say this - those of us that have gone through chemo. WE know our bodies like the back of our hand.
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leeA i had really oily skin/hair prior to BC aswell. Once i was put into chemopause that went away entirely. I seriously could go an entire week (i don't) without washing my hair and it would be fine. Lack of estrogen dries you up head to toe it seems. shore1 i honestly think that once our bodies adjust to tamox/meno some things start happening again, this is just my theory. I find that my hot flashes aren't quite as bad as when i first started tamox and yes I worry about this too but alot of women say the SE settle down. Maybe thats whats happening with you???
i having a funny (not) pooping story. I made myself so constipated on FEC (wasn't taking my laxatives regularly) that I ended up having to go to the urgent care clinic bc i could not give myself an enema which was the only thing that was going to help at that point. Anyway this nice looking male nurse came in and said would you prefer a women to do this? Im like, whatever, i have no dignity anymore. Anyway he ended up giving me 2 perc's, an oral laxative and and enema to help things along. Yikes!!!!
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lee - the American Cancer Society offers a transportation program through volunteers - perhaps you could arrange a ride to the hair dresser that way.
shore - I feel the estrogen is related to dryness. Once I stopped Tamoxifen this issue improved significantly for me...
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Hi Cami - Here is a cutie dog picture for you!
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Hello everyone!! Sorry I have not been on the board for awhile. I had my 2nd infusion on Nov 2 and I was not well this go round. My oncologist cut my dexa steriods in half for the 2nd infusion because I was so wired for the 1st one and I couldnt sleep for 3 nights on the first one. For my 2nd infusion all I could do was sleep, but I had nausea so bad and I was vomiting. I called the nurse on day 5 and she was surprised that Dr. Webster cut my steriods in half and she told me I should ask him to give me Emend for the 3rd infusion. Its been 10 days now since my 2nd infusion and I am feeling wonderful. I am back to being myself. You never think when the chemo is in you that there is a light at the end of the tunnel. Thank god, it ends. My next infusion is on Nov 23. I do not have any hair left on my entire body, but I still have my eye brows. Luv to all of you!!
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shore1 - not everyone has vaginal dryness, and mine isn't as bad as some I've read about. I'm older than you, but still have my ovaries, so made my MO test my estrogen levels to make sure I really was post-menopausal, because if not, I was going to have those suckers out!
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camillegal - I will search the type of shampoo you described in your post, thanks!
rozem - I've been through menopause for eight or nine years and still have oily skin. The only way it has ever dried up throughout the years is with Accutane. One of the times I took Accutane I decided to test its effect on my hair and didn't wash my hair for several days to see what would happen (I took baths instead of showers). After a full week it still looked the same as the last day I had washed it! Amazing. Anyway, perhaps the aromatase inhibitors will help dry everything up as well...
Caylee - I'm glad to hear you're feeling so much better again!!!
re: turkeys - In the past I've basted the turkey with a bit of orange juice. I always use Stovetop stuffing but first I saute onions, celery, salt (kosher or sea salt), black pepper in some olive oil and then mix it into the Stovetop stuffing to make it taste more homemade (I also use chicken broth instead of water). It usually turns out pretty good and it's really easy to do. soltantio, if you end up making one - make sure you reach in there and remove all the organ meat before you cook it - or I guess if you like that part, you can leave it in but IIRC they usually have those parts wrapped in some kind of paper (my husband usually does the turkey) so I'm kind of sketchy on that part of the operation.
re: dog pictures - this summer, as I was searching Google images for pictures of benign breast tumors this photo came up in the mix. It was labeled mammary tumor benign. I left it on my desktop for a while so I'd see it and click on it for a smile. This is definitely a cute little "tumor."
Editing to add: Thanks for that tip re: the American Cancer Society and transportation, Dancetrancer!
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Cindy68, it's not TMI - it's GITK (great information to know). I'm going to save your tip about Benefiber and coffee. LOL re: "I pooped today."
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Hi everyone! I just met with my MO and it turns out that I had two nodes taken and both were negative. My original tumor was around 2.1 cm and was less than 1cm during bmx and there was dcis but the original tumor although smaller still had cancer. The margins were good. My dr said it was good news but that he had hoped I would be one of the small percentage that had a complete response.
I was hoping it was dead. I was hoping it was like Swiss cheese.
I am unsure about how to feel about this or what it means.
My husband acts like I should be doing kart wheels about this news. I am just not sure.
I know that we have touched on this a little...but, now that my report is in...does anyone have any words of wisdom?
I feel sad.0 -
I'm alive and kicking. No steroids last night. I slept from 9:30 p.m. to 12:00 p.m. Wow! I feel good, kind of groggy, but good!
Hi to all, trying to catch up! Cami, what is the name of the shampoo you use without rinsing? And anyone know a brand of ginger ale that has real ginger in it? I've never seen the brand Cami mentioned, but I'd like to try it during and after the next chemo round. I was ill'n yesterday big time...
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Pbrain-glad you rested! Sorry you are ill'n:(
I buy bluesky ginger ale. It is organic and has lots of ginger in it:)
It helped.0 -
Pbrain - I like this brand -
I can usually get it at the grocery store, but it's easier to find in a health food department.Jennifer - that's good that your tumor was responding! I think with neo-adjuvant therapy they like to see a complete response. But it is working, so your MO will be able to explain it to you, and what the plan is. I had my surgery first, and the doc got clean margins, then I had chemo, so I don't even know if the treatment I got worked well against my cancer, I assume it did, but.... ? And - yeah! No lymph involvement for you!!!!!
If I were you I would be very happy, but a little concerned (but that's how I feel about my treatment too
)Linda
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jennifer from what I have read the prognostic indicator of not having a complete response is not as significant in ER+ women. I am assuming this is because we still have hormone blockers in our arsenal. Your tumor responded so the chemo did work. If it shrunk it in half (and thats a lot of cancer cells) imagine what it would have done to any micro-metatsis (assuming you had any which there is a good chance you did not). My MO said a bigger prognostic indicator is having clean nodes after chemo which you did!
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Jenn, this is good news.
Your husband is right, go do cart wheels! Look at it this way, the neoadjuvant therapy was working on your type of cancer. So it didn't get it all gone, it was working. This means it will be working on any stray cells that might have wandered away. But with the BMX, and clean nodes, I would bet you are cancer free. They took it out, it is gone, unlike us lumpectomy girls, you don't have to worry about margins. It is all gone. You are cancer free! And if you do have a cell or two lurking around, I bet it is as sick as a dog. Yeah, I can understand wishing to be totally responsive, but don't worry. Reassure yourself with what they did worked on your ex-cancer. Congratulations!Thanks everyone for the ginger ale suggestions! I'm buying some tomorrow. I know the link on the front page says it only works for nausea at the beginning, but I'm ready to do anything to keep my once happy stomach on an even keel!
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Jenn, I really liked PBrain's description of it - your ex-cancer!
During one of my conversations with my BS I asked him about some nagging thought I was having at the time (I don't recall exactly what it was - there have been so many!) and he said "you're doing the best thing you can do to keep it from coming back in the future - you're having a mastectomy." His words came to mind when I read what Jane said regarding the margins (ha, I bet I'm going to have "Jane Says" for an earworm now
).That's not to say anything about lumpectomies (!) - I don't know much about any of this and I know his course of preferred (?) action with me would have been a lumpectomy (because he likes to do introperative radiotherapy) but my tumor was too large for that option so BMX it was...is, whatever.
Anyway, I agree with your husband and everyone else - cartwheel time!
PBrain, I'm glad you're feeling better today. Do you like real ginger? The only time I ever have it is when my husband orders sushi but it's pretty good that way - I guess they peel it from the root. I just did an image search of sushi + ginger (http://www.google.com/search?q=sushi ginger&sugexp=chrome,mod=0&um=1&ie=UTF-8&hl=en&tbm=isch&source=og&sa=N&tab=wi&ei=J3mhUJWrDYT5ygHg3oG4DQ&biw=962&bih=431&sei=KHmhUP-sO-edyQHTmIHQAQ) - maybe it's pickled that way - I'm not sure - but I've bought the root at Trader Joe's and didn't do anything with it but had planned on just using a peeler on it. I've also bought it by the jar and use it when I make bok choy. As an aside, I have read that ginger can induce apoptosis in breast cancer cells.
ETA: Link re: ginger (Research: Ginger selectively kills breast cancer cells) http://www.greenmedinfo.com/blog/research-ginger-selectively-kills-breast-cancer-cells#_edn1
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Just a point of clarification....women who have MX can have close margins as well. It really depends on the type of MX performed.
For instance, I had a skin sparing MX with close margins on the skin side.
I've read some women can have close margins when the tumor rests on the (chest) muscle wall as well.
MX in general means all the breast tissue is removed, but if skin stays, or muscle stays, there can be close margins.
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My tumor was very close to the left nipple. Not directly behind it but I could feel an attachment there and at times it almost felt like a second nipple (under the skin).
I had the images of the mammograms/ultrasounds on disk (perfect fodder for OCD) and was able to figure out how it lined up (ultrasound compared to mammogram - that one took some time). I had a lot of time with those images...and spent a lot of time between the mammo/ultrasound and the family trip then vacation obsessing over them.
It seemed like every time I would find an online image that looked similar to what my tumor looked like on the mammogram it would be a case of gynecomastia which kind of fed into my paranoia about having taken Wellbutrin for the year prior to the diagnosis (I found a message board where some guys were talking about Wellbutrin causing "gyno" - as they referred to it). In 2003 I had a mammogram callback (left breast) and had been on Wellbutrin for a few months prior - probably no connection but I sure did take a lot of screen shots about prolactin, Wellbutrin, gynecomastia, etc.
The concept of "skin saving" scares me because of the discussion of cells being left behind but I know that's what chemo is supposed to do - help flush them out, followed by the herceptin. I know that but yet...well, you all know the feeling probably far better than I do at this point.
The first plastic surgeon said she thought my breasts were about 450-500cc - I asked her to relay it in approximate ccs so I could gauge that against whatever level FutureBoobs™ feel best at (cc-wise). Note: they were my own - I had never had any alterations to them until five days ago. Both PSs recommend something close to my old size because of the size of my chest wall although I would really prefer to be a nice nipple-less B cup - really, I would just like to be alive and at first didn't give a rat's *ss about whether or not I had reconstruction surgery but then again, I still want to be able to wear bathing suit tops so there's that.
They were severely ptotic (at least in my opinion and the second PS mentioned it as well) and the tumor reminded me of a heavy pinball trapped in an athletic sock - meaning, that's the sensation I had from it at times. I'm sure my husband got sick and tired of that old pinball/athletic sock analogy and probably hopes to never hear it again - ever!
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Very true TonLee! Thanks for the correction.
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No worries Pbrain...I wasn't really correcting you..lol...just putting that out there in case someone became confused.
Lee,
The reason I didn't go back and have the skin removed (as recommended by the breast surgeon) was because my close margin was on the skin...my tumor pressed right up against it.....I consulted with two PS and they said if it came back in the skin, I would see it. Plus I knew I was getting rads, so I declined the re-excision.
Nipple sparing was never an option, even though the tumor wasn't even close to the nipple. The research I found at the time recommended against nipple sparing for IDC.
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TonLee - mine was so close to the skin that it's how I knew it was there - the big visual "oh no! WTH is that?" It looked like a dented bruise.
I guess that part of the skin is now gone. He drew out the diagram the week before and on that breast the plan was to take out a big eye shape (for lack of a better word for that particular shape).
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I have to say that I am so happy right now. I HAVE CLEAN HAIR.
My husband and I came up with the perfect solution and it worked with nary a drop getting anywhere near the incisions! I wore one of his old flannel shirts with a towel around the neck and then a bright orange rain poncho atop all that. We used a little folding chair in front of the shower (it's a stand-up shower) and I was able to put one foot into the shower and kind of lean forward while he washed the hair from behind.
This was seriously dirty hair! It had been through 5-6 hours of surgery and a lot of icky moments since then. It wouldn't even lather up on the first wash.
I guess I'm learning the meaning of really simple pleasures.
Thanks for all the suggestions and for putting up with my meeping around about my dirty mop.
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Clean hair is a huge thing! You're right you do learn to enjoy the simple pleasures more. Like my food tastes good today, I can walk around the block this week, I slept 6 hours in a row, I drove 30 miles all by myself, I vacuumed the living room, lets see....this list could go on and on
I hope you have a great evening!0
