TRIPLE POSITIVE GROUP
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I received my first Christmas gift yesterday. 4 month check up report is I am in full remission. There is no indication of disease any where in my body. Numbers and cancer marker test are all at normal levels! I can now move forward without the dark clouds of doubt shadowing everything I do. I know there is always the possibility that it will return Her2+++ is just like that. Yet for now, this moment I am rejoicing and enjoying the moments. Merry Christmas everyone, do not loose heart or be discouraged. Hope is a powerful thing! Love and prayers, Angelsgal
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Whew, I am finally done with surgery! Last Wednesday was the big day and it went well. Surgeon opted to not put port in at the same time as DMX so I will still need that done before treatment starts. Ended up with 2 drains but boy are they a pain.
Got prelim pathology back and left breast is clear with just some junk that could have turned ugly. Right breast just had known mass that ended up being around 2.6cm. The great news is that the SN was negative!!! The only gray area is that there is an area suspicious of lymphovascular invasion. Don't know if that is bad since node was negative??
Have not seen my incisions yet. Dressing gets changed tomorrow at surgical follow up.
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rlmessy,
Glad to hear your surgery went well. Yeah, those drains are a pain! I had a lumpectomy and ALND, and had one drain. But, it took me forever to get rid of my drain because I didn't rest enough so take it easy.
Congrats on the clear SN! That means no ALND for you and a smaller chance of lymphadema. Here's hoping you have an easy recovery.
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Ok... need some help and to talk this through. I am recovering from my DMX so nothing to do but think too much.
Initial biopsy said 1.9cm, triple+, no lymphovascular involvement.
Surgical pathology says 2.6cm, triple+, SLN negative but areas suspicious for lymphovascular involvement.
Surgeon says stage 1b and not to worry about lymphovascular because node was negative. Says C was contained to breast.
But doesn't lymphovascular mean it has begun to travel by lymphpahtic system and vascular or blood system too? And while lymph node is clear is there a test to see if it is moving via my vascular system?
I just don't know if the lymphovascular issue is something to worry about and consider when deciding on future treatment???
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rlmessy - Does that mean you have residual tumor from the surgery?
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neeli...I don't think so, I had a double mastectomy with clear margins all around.
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rlmessy - I assume you will be getting TCHP and tamoxifen/AIs,which should treat anything that has moved via the lymphovascular systems. That is the whole point of systemic treatments like chemo and hormone suppression.
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rlmessy - Sorry i thought you had chemo first and then surgery. You might need chemo or radiation.
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Rlmessy- You should be offered plenty of systemic treatment that is likely to take care of any stray cells, like Hapa mentioned. Unfortunately there are currently no blood tests or imaging that can determine whether microscopic cancer cells are circulating or hiding elsewhere in the body. Luckily the systemic treatments are extremely effective and although none of us has any guarantee, Stage 1b has a very good prognosis. Also Triple positive can be treated with targeted therapy (Herceptin and/or perjeta), chemotherapy and hormonal therapy- it’s quite the arsenal. I hope you’re healing well. Hugs to you, we’re right here with you
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AngelsGal57 - Congrats on your 4month check up! That’s a wonderful Christmas Gift. Have a merry one!
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Hello friends! I’m currently on a Kadcyla regimen & have a serious (and seriously annoying) cough. Dry, unproductive hacking. It goes away when I lie down to sleep. Can’t seem to get my MO on the phone to ask what I should take to calm it. Anyone have any advice/experience
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Paloma,
Someone should be on-call at your oncologist's office, even if just a nurse. When you call the office, does anyone pick up, or is there a message with instructions about how to reach someone on-call?
I'm a big cough drop fan, but I'm not sure drops would work for dry hacking.
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Hello Paloma - could be allergic cough? might want to try OTC antihistamine like cetirizine, it doesn't interact with kadcyla and doesn't impact liver function but make sure to confer with your MO; also, cough seems to occur as a side-effect of kadcyla like (18%) - today I'm having my long delayed and now dose adjusted 2nd kadcyla dose - hopefully my liver stays calm on the lowered dose
Does anyone have joint pains after chemo? - have recently noticed that when in a prolonged position like I was sitting on the floor wrapping presents, moving from that to get up was just a slow achy thing, caught me by surprise as my last TCHP was 09/13 and I'm not on the tamoxifen yet
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Thank you ElaineTherese & FNPMom. They do pick up at the office, and I’m able to leave a message on my mo’s non-urgent voicemail. I will check out that antihistamine and see if it helps. I also read somewhere that ginger tea may help e we it’s inflammation. I’m going to give that a shot while I’m at work today. Fingers crossed!
Good luck with your second Kadcyla dose, FNP! I hope it goes well. I feel a little stiff after sitting in the same position for a while, too (like driving for an hour, or sitting at a restaurant). I guess I just chalked it up to getting the crap out of my system. Are you doing any dedicated stretching or exercise? Wondering if that would hrlp
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Paloma..a couple of things to try...hot shower, menthol cough drops, tea with honey or some pineapple juice solo. Those are my go to remedies for a dry cough.
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rlmessy: areas suspicious of lymphovascular involvement means that there could be cancer in your lymphovascular system, not that necessarily is. If the cancer had gone to your lymphatic system, the first place it would go to from there would be the axillary sentinel lymph node(s); however, those lymph nodes were clear. That is good, which is why your MO sounds confident that the cancer was confined to your breast, even if for you the situation still sounds terrifying.
For comparison: my pathology report said: lymphovascular invasion present; I also had two nodes with macro-metastases (i.e. cancer in the nodes that can be seen by the naked eye, without a microscope), with signs that the cancer was extending beyond those nodes (extranodal invasion present); this sounds bad, more ominous and doesn't sound reassuring of the cancer not having traveled beyond the breast. Nobody wants to have residual disease, but as far as residual disease go, your results are not bad. And there are new treatments now for residual disease. So, I think you can be optimistic!
dry cough: I was thinking antihistamins or asthma meds but since I have no idea if that is compatible with Kadcyla I would also leave a message explaining the issue and asking for a call back.
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FNPMom, just curious if you had some joint pain before your diagnosis? I had problematic knees before and during chemo it seemed like all my achy joints were completely healed. After chemo, it magically reappeared. My OC said that the chemo attacks everything including inflammation in your body so actually helps with aches and pains. Not sure if others have head this but I found it interesting.
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Hi guys - no achy joints prior other than my left hip hurting when running, which made me switch to cycling - have not cycled since the diagnosis (afraid of falling and breaking something, delaying plan of care - just power walking for now) it feels like my joints get stuck and achy - I feel it even in my hands - avoiding NSAIDs because of my liver so, I've been using peppermint oil and it helps
I got done with the 2nd Kadcyla dose yesterday; this time, I felt so cold after - loaded up on warm drinks and a dedicated portable heater - felt tired but woke up today feeling normal - lab check on 01/10/19 - my fingers are crossed that liver enzymes stays stable - my onc can lower it further from 3.0 to 2.4, but after that he'd have to herceptin/perjeta me - I really want this drug though - my HER2 was in the DCIS and I think that was the remaining 11 mm (they no longer did prognostics after neoadjuvant and I agreed since it wouldn't change plan of care)
On another topic - the things we tell each other lol - but as I was wiping after voiding this morning there was a trace of blood on the tissue. I'm not on tamoxifen yet (waiting to get stable on my kadcyla dose) - I think my ovaries are turning back on, I have 2 daughters and they're on their cycles this week - I'll have to talk to my onc - anyone contemplating doing complete hyst with bilateral ovaries/fallopian tubes being removed too?
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Hi FNPMom - happy to hear you woke up feeling normal after the 2nd Kadcyla. My liver enzymes went way up a couple oftimes with TCHP so I’m hoping it doesn’t mess up Kadcyla for me either (starting 1/2). Fingers crossed for your enzymes to be stable on 1/10. I’m tentatively scheduled to have my ovaries and tubes out on the 10th so I can go on an AI. My last chemo was over a month ago but no signs of a period yet. My MO was pretty firm about putting me into menopause & doing AI, she never even mentioned tamoxifen.
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FNPMom - my ovaries turned back about 1 year after my last chemo and my period returned - luckily I was due to see my onc a couple weeks later so when I mentioned it to her she had me start zoladex injections to shut my ovaries back down (plus I was on tamoxifen for 10 months already) - at this point she thought removing my ovaries was not necessary as it’s a big decision and permanent unless I felt I’d rather do that - at this moment, for me, I don’t feel like having another surgery if I don’t have to so I’ll do the injections for now - I hate having to make these decisions - I never know if I’m making the right one lo
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Hi FNPMom,
The Kadcyla can cause muscle & joint aches, which I have developed. It’s manageable yet annoying. I didn’t have any aches or pains prior to cancer. When I was on an AI together with the Kadcyla, it REALLY intensified. For now I’m just gonna finish the Kadcyla and then we’ll try the AI again.
Angie
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I am reading more and more TPBC women are getting Kadcyla and not Herceptin and Perjecta regimen ...I thought Kadcyla was only after H&P and residual disease? But reading some are getting Kadcyla right after Chemo.
Those of you on Kadcyla, what side effects do you have?
I have had 4 rounds of just H&P with ever side effect of both medicines except diarrhea, I am severely constipated instead.
I may ask to either drop Perjeta or switch to Kadcyla. TIA.
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I will be starting Kadcyla this week, hopefully. I have an infection in my left breast (still have expanders in) and praying it will subside enough to start treatment. My concern with this drug is whether or not it will allow me to work. What has everyone else done to tackle this? Or have the side effects been too severe for some people that you just weren't able to work? I realize the side effects can vary, but just looking for a consensus I guess? Thankyou!
Laurie
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Kimmh012:
I did TCHP for 6 rounds and my tumor shrank from 2.3 cm to around 8 mm according to the pathology report from my mastectomy. So I had residual disease. No sense in continuing the H&P when it didn’t kill all the tumor, per my MO. So Kadcyla it is.
I read somewhere that it’s pretty common for us triple positives to have residual disease so that’s probably why you’re hearing all about Kadcyla.
Side effects of K: muscle, joint and bone aches are my biggest. Then some mild fatigue. I’m able to work full-time on this and I’m a nurse practitioner in a hospital. Totally doable, just not feeling a full 100%, not sure if i’ll ever feel 100% again, but I’m gonna try.
Angie
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hello all - yep weird achy joints but it is tolerable; may intensify as I continue to take it - hopefully my liver enzymes are fine - I’ll know next week 01/10 - I left a voice mail with my onc on the spotting - he was so sure my ovaries were inactivated by the chemo, we don’t need ovary suppression meds but I’ll see what he says - happy new year, guys
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My sister in law is on Kadcyla, but it was only offerred after H&P failed.
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thank you all TPBC Warriors
In a few facebook groups, no mention of first trying H/P ... do you feel the side effects are less on Kadcyla? Does Clartin help with the bone pain?
Also a little nervous since I was ER95% and PR90% age 50 and I have not started Tamax or ALs, might ask them to run my numbers again.
Kdhoney/Angie...I had surgery first, well 2 lumpectomies, then chemo then #3 because they found DCIS with reincision for clear margins, shoulda went with my first instinct to cut the bitches off, LOL....Well I might get switched anyway, just got a call from CT Chest, PET Denied, found clear margins BUT "auxiliary node tail mass", Ultrasound on the 7th.
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Hi,
I’ll be joining the Group starting Kadcyla on January 16th. I have finished 6 rounds of TCPH and have had two H&P infusions. After my double mastectomy they found residual disease in my breast tissue and in one lymph node so Kadcyla it is. I am just hoping that the side effects are minimal. TCPH just about did me in! I’ll also be doing radiation towards the end of January. I’m glad to find some other ladies going through this drug at the same time.
Have a good day!
Julie
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Can ya-all help me think through something? I am totally a type A person and do not do well in grey areas. So, I am 12 days DMX - everything is going well but I am stuck on my pathology report. It said "areas SUSPICIOUS for lymph-vascular invasion." Now, that means in my mind - maybe its there, maybe its not. My SN was negative but there was nothing mentioned about the vascular or venous side.
So, my question is - can they look again and try to determine for sure if it is there? Is that something I can ask them to do? Or, is it worth sending the slides to MD Anderson or John Hopkins?
Everything else from the biopsy to final pathology remains the same or expected - for example the size was a bit larger but I waited 70 days from DX to surgery so that was expected.
I am assuming that if there is lymphovascular invasion the treatment plan would be more aggressive. And, I don't really want to do aggressive unless I have to.
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I answered you a couple of pages back about lymphovascular invasion...if it is not in your lymph nodes it is most likely contained to your breast.
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