TRIPLE POSITIVE GROUP
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Oh and ladies...let's not forget breast cancer.org.....the site that brought us girls from all over the world together to ease each others' pains and fears!
Yeah bc.org!0 -
Ashla u'r right Thank God we have this.
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Yep, yay, BCO!
Dance, man you have not had the easy road through this. I hope everything works its way out for a good new normal for you, FAST!0 -
specialK -thats a great tip, i had the infusion on wed and i swear it wasn't even 30min and this is the WORST i have felt - major fatigue and my hips and knees are sooooo stiff. I will ask them to slow it down, maybe that will help.
ashla so right about our bodies and all the changes inside and out. I was in tears today because a dress i bought for a wedding tonite is too tight!!!!!!! uggghhh i know this is not important in the scheme of things but between my super short 'do/thin eyelashes and brows and the belly buldge i feel so ugly. On the subject of hair mine is growing in in the back but the front is taking FOREVER
dance hope things get better for you
i had the worst experience at the dentist the other day. Haven't been since this whole mess so i was really due for a check up. I did tell the receptionist briefly about the last year. She said just tell the hygentist what meds you are on. Well at my appt the hygenist asks me all kinds of personal questions like "did you find it yourself" and "did you have a lump or msx" HOW IS THIS RELEVANT????? i am so ready to tell people to bleep off!!!!!! i feel like a freak show honestly
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and yes YEAH FOR BCO.ORG!!!!!
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My blood counts are also staying a bit low. But then I havn't really been eating right the last couple of weeks. Going to remedy that starting tomorrow!
Peg
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Rozem...
I've shed those same tears when I dare look more than briefly in the mirror. Even my clothes that fit don't fit! But it's getting a little better as I work out. Very slowly but better. And every time i get caught up in sadness about cosmetic stuff.. I get a not so gentle reminder like nipple discharge to whip me back to who's the boss of me lately.
And my hair is barely more than an inch in most places and sticks up like I stuck my finger in the light socket! It's been 6 mos pfc! But my hair is soft like a feather! Like anyone is gonna feel it. I told my mo to touch it and he did...kinda reluctantly but even he was surprised how soft and silky it was..all one inch of it! I told him if it's ever long enough to cut it probably belongs in a toxic waste dump!
Sigh.....put that beautiful dreass, your makeup and dancing shoes on and then like that inspirational piece says.....dance like noone's watching at that wedding!0 -
rozem - I had that same experience with a dress for a wedding! It was 2 days after tx#5, I bought 2 dresses and 3 pairs of shoes so I would have options. On the day of neither of the dresses fit and I could not cram my swollen feet into any of the shoes. I went out and bought a pair of those black filmy pallazo pants so I only had to wear underwear underneath, a ruffly top since I had my left TE out and I wore a pair of old and broken in sandals. It was a really fun wedding - a bunch of people there knew about what I was going through but all were supportive and wanting me to have fun. The standout moment was when my DD asked me as we were getting in the car if I had my makeup professionally done because I looked so pretty! Warmed my heart..love that kid. Go and have a great time - you deserve it!
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Rozem --I'm sorry at the time of this wedding all this happens, but it is usual--I'm sure u can fin something pretty and comfortable and u will look lovely. Don't be so hard on u'rself.
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thanks ashla and specialk - I laughed and cried when i read your posts. I am having one of those emotional days...i am going to squeeze myself into something, put on my fake lashes and dance like noone is watching!!!!!
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Rozem....enjoy yourself. I had to represent the mother of the bride at my niece's wedding in December. I spent a small fortune making sure I looked ok. Had the make up done professionally, had the wig styled by one of the top wedding hair people in Indy. Overall I was pretty happy and I had a ball at her wedding.
Ok, please don't think I am against ACS. I think they are great and were very helpful. I just didn't like that particular event here in town. In addition to bco.org, I also like pink ribbon connection. They were so nice, helping with the places to go to look better, and putting together this huge packet of info that they provide to the docs. Has info from acs, and many other places.0 -
Wow your storys amaze me I am very new to this forum and just found out I have BC stage 2 IDC mass size of 6 to 7 cm clinically also 3x's positive. I am 34 and all this is crazy scary. I am going for chemo first in hopes to shrink it for a partial masectomy. My question is this... if it shrunk to nothing why a masectomy? Should I still get a full masectomy or a partial. I am kinda conflicted, scared and worried about the surgery part and wanna make a good choice. Any info or opinions you might have I will gladly accept. Thank so much
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Amy4978,
Welcome to the forum....the questions you ask are indeed the same questions the majority of us have faced . Deciding on mastectomy, bilateral mastectomy or lumpectomy is just one of the many we are all unprepared and unqualified to decide. It's a very personal choice . I opted for lumpectomy after therapy at the gentle nudging of my bs.
There are also quite a few of us who had neo adjuvant chemo like you.....me included.
Even if your cancer has completely disappeared with chemo...there is scar tissue left behind that needs to be removed. Alot has to do with the size and location of the tumor and also your breast size .
I had a nearly 3 cm tumor on outside left quadrant of my left breast but I have big boobs...DD.0 -
I have a full C and my mass is about 6cm on the outer middle portion of my right side. Did your mass shrink from the chemo?
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Amy I'm sorry to say welcome here--but there is a wealth of info and nice people here for u to think with , rant with, talk to and even laugh. A lot of women faced u'r dilemma, and I would think that after the 1sr ohas is done is when u can really talk to u'r drs. and make a decision based on what happening then.Some of us had no choices it was something that had to be done (that's easier on us LOL) But wait til that time comes , in the mean tie just do what u need to do an u'll see u'll decide what's right for u.
Also keep going on the board, there are plent of sites u can read and get informed too.
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Thanks I sure will. I chatted with my BS and she is confident we can shrink this puppy.. I talk with my MO Thursday and have a few questions for him but wondering what questions any of you might have asked your MO the first time you meet or even thought of after and didnt mention.
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Amy4978,
Go back one page and you'll see a link to the NBRST study I am participating in. When you are given neo adjuvant chemo the hope is that the tumor will shrink enough so that lumpectomy is a viable option cosmetically and medically. Most bs's and mo's want to spare your breasts if at ll possible. They are hoping for even a partial response.
My advice to you is not to get too caught up with the size and shape of your mass during chemo. My docs didn't bring it up although they said they knew TCH was working and I didn't ask about the size of the tumor itself. Just prior to lumpectomy I still felt a lump but it was harder and a different shape. Turned out that it was scar tissue. No sign of cancer.
There are many weapons in this fight and there are many wise and wonderful ladies here to help you through it all. Good luck.0 -
ashla that is crazy that your count is lower than it was on chemo! My onc told me it could take YEARS, if ever, for my counts to rebound, b/c the bone marrow has been damaged by the chemo. He said it is not uncommon, and indeed I have heard others here say it took many months if not years for their counts to rebound. I just wish the whites would come up b/c I feel that is why the thrush is hanging on for me. At least I'm able to keep it under control, and it doesn't hurt, so I can still eat ok.
Thanks moonflower - I wish you the same. I know your path has been rough, too.
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My white counts were low last August. My PCP said that was to be expected given treatment (still doing Herceptin back then). They were all normal when tested in the spring. I wonder if counts go down after chemo because you are no longer getting nuelasta. Remember I got shingles 3 months PFC, then 1 bad cold 4 month later followed by another 2 months later… but was never sick with even a cold during chemo.
dancetrancer you are still doing herceptin and it's still pretty soon after chemo/rads. It takes time for everything to recover.
Ashla after one year PFC my hair felt like hair again.
I went to a friends wedding 3.5 months PFC. I was topless by then but still had the TEs fully filled. I managed to find a dress to fit them in. The rest of the dress fit fine because it was align. Align is good. I swear you can gain 10-20lbs and it still fits.
Amy they thought my tumor was 7cm too. The IDC part was only 5.5cm but with the DCIS it was more like 6 or 6.5cm. I had surgery first. My BS actually doesn't believe in shrinking so you can have a lump instead of MX. His belief is you don't now if the tumor shrinks and leaves stuff behind. You know it can shrink like Swiss cheese. My location was upper left in the posterior region (closer to the chest). I barely had a 34B breast and not very full. You might want to discuss this with your BS and Onc. My BS is a little bit old school but he did his fellowship in surgical oncology at Sloan-Kettering and what he said to me made sense so I was OK with that.
Rozem I'm sure she was asking because she know others, maybe family, maybe patents that have also gone through this. I'm sure she was asking because she either wanted to let you know she cared and/or was just scared for herself and wanted to know.
Camillegal you know more than you are giving yourself credit for!
Of course I agree about BCO. I have donated. But as far as donating time the ACS needs your help. I think Fluff's story really illustrates how they do need help.
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Gas...I can comment on that...try a probiotic. There are a gadzillion out there...I have tried at least 6...I will say...best results are with Florastor. Until it gets built up in your system...BEANO, yes...it's true...and it WORKS. BEANO before and there'll beno gas...LOL...a little humor ladies!
Asla...I'm still on Herceptin...get a MUGA scan every 3 mos. If EF too low I see a cardiologist and get the echo, ekg, etc workup. I consider myself lucky that I have not had to stop the herceptin, my onco says I will be on it for 3 years. Not proven, I kno, but I have to put faith in someone and I like my onco. I see my onco every 6 weeks now, my BS every 6 mos.(due next month). I expect to see 'someone' at least every year for I HOPE many years to come and I'm OK with that. After I decided NOT to have a BMX, my BS (who is, in my opion, the best) still wants to see me every 6 mos...yes...for life. I'm OK with that too because I believe she is THAT GOOD. If they are not 'setting you up religiously for the ECHO or MUGA that you need...then yes...BE Bothered and do a 'tap dance' on somebodies head. Let them kno that you EXPECT them to have your best 'health' in mind...ALL the time. Hope and pray that you find a good team you can, well basically, put your life and your faith in and then...well...just get busy living.
Love n prayers to all,
Sue
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Soltantio, do you have a cut, scratch, pimple, anything on your head? Did you shave perhaps? Or did your hair just fall out in clumps? My point, might just be a lymph node due to some skin or scalp inflammation.
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Memasue56,
Thx for the advice about dancing on peoples heads....Being confident in your medical team is of the utmost importance and I'm still struggling with it. By BS is my rock but the MO will be the one in charge of the rest of me. My current mo is in a hospital setting...a new one at that... and his staff is really bad. i really don't want to switch again but this is not the time to settle for less than we deserve.
Are you still getting herceptin infusions? Have you read the latest studies about the subcutaneous injections? Apparently they are just as effective as infusions.
thx again Sue...xoxo0 -
Tonlee - I have a question for you too. I lost alot of muscle in my derriere (spelling?) after chemo. I walk alot, and am doing squats. but my behind still looks flat and without muscle. No J lo here lolll Can you recommend some exercises for this??
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soltantio - I didn't know either about the counts taking possibly years to recover, if ever. I only found out when it happened to me (well, it's been 2.5 months, not years yet, so who knows what my story will be). My onc said it is not uncommon. He said it is because the chemo damages your bone marrow, and in some cases it takes it a long time to recover to normal, if ever. I don't think it has anything to do with whether or not you take Neulasta or Neupogen, but who knows for sure. I took Neupogen.
It doesn't happen to everyone, though, so I wouldn't worry about it. You can't control it anyways! I feel fine, albeit more tired than usual at times due to the lower red count. What bothers me most is that I'm still battling thrush off and on 2.5 months after chemo. Now THAT is not common, so I highly doubt it will happen to you.
Regarding the spot on the back of your neck, does it feel bony? If so, it could be part of your vertebrae, which could be rotated and hence sore. It's easy for them to get slightly out of alignment.
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amy I did neoadjuvant chemo aswell. Like asla says don't worry about surgery just yet, you have time to think about your options. Its hard enough just getting through your chemo treatments. As for shrinking tumors my BS takes the entire amount of the ORIGINAL tumor plus a margin around it. So basically if you are a lumpectomy candidate going into neo chemo then you would be after aswell. The "swiss cheese" effect that lago mentions is how my doctors described it to me aswell, so if you are trying to excise a 4 cm area for a 6cm tumor there is a risk of leaving some behind even if that 4cm area tests clear of all cancer. Now i know you would have radiation after to mop up any remaining cells but i would be uncomfortable with leaving anything in there. Just something to discuss with your doctors - are they taking out the entire original tumor plus a good margin or taking less then the original size?0
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This thread got knocked off my favorites again.
ashla I find at my treatment center the doctors and nurses are great… staff sucks. I double check everything. Ask to talk to a nurse if something doesn't seem quite right. Unfortunately all facilities are cutting costs. Less staff means more mistakes and some are just poorly trained. I could tell you some stories about what my mother has dealt with recently for surgery and she's going to the top rated hospital in the country (Mass General in Boston). You need to be your own advocate.
But if this new onc isn't listening you need to have a meet with Jesus meeting. If things are still not right I would switch. If it's the staff let your MO know…and double check. If you have to be a PITA then be one.
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Dance when I thought I was starting thrush I took one of my acidophilus capsules and emptied the contents onto my tongue. Its the same stuff I use "down there" as a suppository to fight yeast infections. Warning it is sour/bitter but not like eating a lemon. I never did get thrush so who knows.0
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LAGO hahahahahahahahaha
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soltantio -yay for cold caps!!!
Thanks for the thrush advise. Here is what my current regimen is - it is keeping the thrush under control (sometimes it seems to be gone, then other times it comes back with a vengeance):
brush teeth after each meal (sterilize toothbrushes)
avoid sweets
chew gum with zylitol after eating out when can't brush teet
monistat to the tongue 2 to 3 times daily (per dentist, tastes nasty, but it works - ooh fun!)
prescription fluoride one time daily per dentist
chlorhexadine nightly rinse per dentist
acidophilous 10 billion liquid - let sit in mouth repeatedly over 5 minutes - at least once a day
yogurt daily
I still have grape seed extract as something I may try, but since the Monistat seems to knock it down hard still each time I put it on, I'm sticking with that until it no longer works.
I failed Nystatin and a 12 day course of Diflucan.
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That is a very good question rozem I havent asked that! But I def intend to now. I am getting my port put in Tuesday and meet with my MO on Thursday so I need all the questions you ladies can think off... The more the better. Thanks
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