TRIPLE POSITIVE GROUP
Comments
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Judy...checked out the site. My hairhas grown back some but is still thin on top, and not much in the way of bangs. I think Iam going to order one of those hair pieces for the crown and front! Thanks for the site.
Also...Not to be a Debby Downer...but I was was thrown into chemopause...had terrible hot flashes...started tamoxifen...and they still continue. I ahve tried everything my Onc and I can think of except hormones. Nothing works. Not even the antidepressants. So...like you, I am either freezing, causing me to tense up and then all my joints ache, or turning into the human heat lamp. Hubby says I am freezing him out by leaving the wi dow open a little at night. Says the only thing saving him is when I have a hot flash and heat up the whole bed. Lol. Funny guy! But good sport for letting ,e keep that window open.0 -
Oh my LORD fluff..you cracked me up....Human heat lamp. my kids are constantly griping because as I drive I turn the air off/on....offf/on. In bed you can literally put your hand a foot away from me and feel the bed HOT. Then minutes later I need to bundle up.I sweat like crazy too. I have been on tamox for 2 years and getting ready to switch to an ai this month. Not sure which one to go for yet, but will do estrogen panels etc.
My port came out last year. I have a small faint scar. Nobody notices it, but if I want to dress up I use a little dermablend from the makeup counter, Blends right in, no more scar!!
Congrats to all on birthdays and tats!!
Dancetrancer, I take lots of D3 and go into the sun almost daily. I take my fluffly blanket across my tummy, then roll up my sleeves and pant legs. LOVED the video
I think as long as you get the port placement right, you will be able to dance through treatment. I play very agressive competitive tennis, serves/overheads smashes etc, and didnt miss a beat through treatment. Achey, tired, tree trunk feeling legs, yes. But, I tried to do what I could to stay in the game. I needed it. Dont look at treatment as something that is going to make you put hit the "pause" button in your life. Live through it
I have looked extensively into the ctc scene, consulting my onc and naturopath. Women with no ctc activity have recurred and others with elevations are fine. So, we just are not there yet. As soon as we figure out which marker to monitor and how, perhaps we will be onto something.0 -
I feel very lucky about the hot flashes. Has my last cycle 2 weeks before chemo. On chemo I had some warm flashes between 2am-5am. Once chemo ended they seem to go away even on Anastrozole. I find now I might get one between 2am-5am depending on what I eat. The hot & sour soup at Sun Wah does it for me. (Had some for dinner last night. Had a flash at 5am this morning). Other than that I might get a quickly flash if I have a glass of red wine but I don't drink very often.
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Judy and Fluff - My onc PA suggested a couple meds for the hot flashes (effexor and megace) but I chose not to use them. She also suggested an old-fashioned antihistamine with 3mg melatonin. I used chlortrimeton and the melatonin and was at least able to get 2 hours sleep in a row. I think now after about 1.5 years of flashes pretty much every hour they are getting a little better. I LOVE my remote control timer stand fan at the foot of my bed.0
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Judy, Fluff, gee Whiz- I went through menopause before Dx. I would sweat and freeze too. Like Omaz, I had a fan by my bed witht he remote, and two blankets, one heavy one light. I alternated when needed, and the fan went on and off. I used to keep a battery operated little fan near me at work to dry my hair, because it would look like I stuck it under the sink. If I at least dried the hair around my face, it was much less noticible.Also, I used to use deodorant around my hairline- it worked ok to keep the sweat our of my eyes. For you gals it came on faster, so I hope it lasts less time too! Just about the time my body adjusted to menopause completely, I was Dx'd. Such is life, LOL
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im 28 and on chemo pause too - driving with the constant change of windows up and down check! - night sweats then colds check! - moodyness...i dont have a scapegoat so non-check!
hang in there ladies, my gyn said it will get better, she offered me stuff but i've got enough... school is uncomfortable though... that's the only little bad part
but it is what it is, at least.... i have a handicap parking spot
... those will cheer you up for sure! 0 -
THey are having 10% off hot girl pearls for valentines day!
You actually store these in the freezer till your ready to wear.
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hi ladies
i wanted to update everyone on my surgery results -
i got my final pathology back from my surgery 3 wks ago - complete response to chemo, no idc left in any of the tissue, only a small area of dcis
both my sentinal nodes were clear aswell - so they did not take any further nodes (i didn't know that some ppl have 2 some 4, i thought he only took 2 but i only have 2!)
they were going to give me a pass on rads if i went straight to a bmx but i decided to do them in the event that there were any micro mets in the axillary nodes (they said the likelyhood of that was less than 5%)
so i will do the rads and then book a date for a double -
the advice on this thread helped me make the rad decision so thanks to you lovely ladies
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Geewhiz, so great to hear about your ability to still play tennis with a port - that definitely is aggressive and gives me hope that I'll be able to dance through this!
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Congratulations rozem!!!0
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Roze,
WOO HOO! That's good news as far as news can go in this BC thing...
But I'm confused, your SN were clear, you're getting a double MX and doing rads?
I'm curious what made you decide to do rads? Is it just that they left your axilla in place? If so, will you just take rads to the axilla?
I haven't read anyone doing what you're planning so I'm super-curious! lol
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Lago, those are a great idea. I'd never heard of them before.
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TonLee, I think that's because she had neoadjuvant chemo. I guess that leaves the possibility that cancer had gone to the axilla and even though the sentinel nodes were clear, maybe they weren't before the neoadjuvant chemo? Just guessing. But great news roze! Congrats!
Lago, I saw whoopsie Goldberg wearing those pearls on the view. She said she love them. I have no issues with hot flashes. I am constantly cold since chemo. I wear a hat all day long. I hope. Once I get more hair coverage it gets better.0 -
hey tonlee
so they told me i would have to do rads (to the breast) in the beginning because of LVI, regardless of doing a lump or a msx- so i didn't do the msx originally b/c they told me it would affect reconstruction
once my path report was pCR they said i could either do a bmsx or rads to the lump - i decided to do the rads with the lump mainly b/c they didn't take any axilla nodes - so they will be radiating the breast and axilla. It is a grey area but i pushed for the rads in my case. They said only a 5% chance that the other nodes were affected but this, combined with LVI made me want to get the rads
i always wanted to do the double and wish i had from the beginning...i am still committed to the double but will have to wait now until i heal from rads (which takes a long time - 4-6 months)
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kay1963 - yes i had neo chemo
there was no obvious lymph node involvement from all my scans before i started chemo so the sentinals were only taken at surgery and they were all clean
my surgeon and MO said that after neo chemo the SNB was just as accurate as before chemo, but i am just not comfortable with that so i would rather do rads then have them take all my nodes
this is the problem with neo chemo - you know the chemo worked but don't really know if you had any nodal involvement unless they were obvious on imaging
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Yes, I know. I had neo adjuvant chemo and the lymph node they bipopsied (I guess it was a sentinel because it wasn't in my axilla) had cancer in it at biopsy, was clear at surgery, but I had two other lymph nodes with 2 mms of cancer in pathology that I didn't know about from mammogram, ultrasound, or MRI. Weird.
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how many lymph nodes did they remove in total? so the sentinals were clean after chemo but not the axilla nodes??? i am assuming the did a full ALND if you had a positive node before -
the whole node thing drives me crazy i must tell you
as for the lump/msx thing i guess i was on the fence, i was trying not to be impulsive as i always am and just "lop in off" but now that i have had some time to think i do want to remove them both. I had consulted 3 surgeons before surgery and they all said b/c of the size and it was only one tumor (not multfocal) that a lump was perfectly fine. BUT I have read too many women who don't and then have a second primary show up years later
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Roze,
That makes more sense. I had LVI as well which is exactly why the RO wanted to do rads (besides the 4 positive nodes). I didn't let them take more than 4 nodes, period. That's all they needed to stage me.
At the time of my MX, they radiated the axilla if there was even a single positive node (the military was ahead of the curve ball for years on that....before the studies actually came out last year and showed rads increases survival in women with even a single positive node, before that though some women didn't get rads with 2 or even 3 positive nodes! Each Onc decided on his own.)
Rads will affect your reconstruction. How much it affects is diverse among women, but it does have some impact. I was radiated with my TE in place....
Anyway, thanks for the info! Sounds like you're on top of things.....
Tonya
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hey tonya
i made the decision to insist on rads because of you...thank you!
i was going to insist on a full ALND (no one including my surgeon wanted me to do this) but after reading your post and those of several other ladies doing neo chemo i felt more comfortable doing the rads to the axilla since the LVI was an issue anyway. I know there is a risk of lymphadema with rads but way less than a dissection.
thanks again
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Rozem.
So happy to hear your great news.! I am on neo adjuvant chemo as well. I was just hoping for a positive response but PCR.....that's great.
My bs did the ultra sound, mri and then the sentinel node biopsy prior to chemo. Done at the same time my port was inserted. He said if the nodes were negative then it wouldn't change.
Question..how did they know about lvi prior to surgery?
I have been considering bmx and was also considering asking for some rads too just in case. I've read a few longterm studies that show those treted with rads have better longterm surival rates.
Rozem's good news is good news for all of us on chemo.0 -
hi ashla
from my original biopsy they could tell I had LVI - how, i have no idea??? i actually had my tissue tested a 2nd time at Dana Farber in Boston b/c i wanted to make sure and yes it came back positive for LVI - so yes, they can tell you that from your original biopsy - it should say on your original biopsy results
the RO said rads from the beginning - i think if you have pCR it is a grey area but I want to throw everything possible at this so if it means another 5 wks of treatment, so be it. I wish they had done a SNB on me, i can't remember now why they said no but i did ask them.
my path report said "no residual invasive ductal carcinoma after presurgical therapy....only residual dcis...these findings are consistent with pCR" praying that yours says the same -
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Rozem.
I am so, so happy for you!
Question...does your insurer question any of this? So far I haven't had any problems but I keep thinking mybe they won't pay for both a lumpectomy and then later bmx. I plan to ask before I decide.0 -
ashla - I live in Canada and we have public healthcare - we don't have to deal with insurance companies but that doesn't mean that we get everything we want! i think it is within reason. In my case they thought that having rads was reasonable and the surgeon suggested i do the lump and then we could always do a bmx later if i changed my mind
when i got the bill from Dana Farber that was the first time i have ever had a medical bill!
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ashla - I don't think your insurance will pay for a MX after lump unless it is medically warranted, as in bad margins, etc. Your physician has to justify the additional procedure as medically necessary.
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Hello. I haven't posted for months, but today I'm a bit scared and I'm hoping for some good advice. I finished 6 rounds of TCH in October and I'm about 1/2 thru my herceptin treatments. I've been doing pretty good, other than a yeast infection over the last 4-5 days. Today I have found a few lumps in bilateral groin area. I think these are lymph nodes. They are quite tender. Should I be worried? Should I call my onc. tomorrow or just wait and see if they improve? Thanks everyone!
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Call...it can't hurt.
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Christean yes there are nodes there. Yes you should call but don't panic. Nodes swell all the time. You could be fighting an infection. Your resistance is still down because of treatment. 3 months PFC I got shingles. I also got a cold (don't usually get colds especially in the summer) just before my last Herceptin. I also got a rash too. Are systems are still fragile.0
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Christean -Was it a vaginal yeast infection? The nodes could possibly be swollen because of that.0
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Yes... Vaginal Yeast Infection. This is my first (and hopefully last) yeast infection. I have taken diflucan and mitronazole cream, but I am still miserable. I am hoping this is why I have swollen lymph nodes in my groin area...Just not certain if a yeast infection would cause swollen nodes. I know bacterial infections and viral infections can cause enlarged nodes, but not sure if yeast would.
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