TRIPLE POSITIVE GROUP
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fluffqueen,
Yes, one reason for doing neoadjuvant chemo is to see whether or not chemo is effective for your tumor. This is particularly important for triple negative BC patients because chemo is all they've got for systemic treatment. My tumor board recommended neoadjuvant chemo for me even before I got my HER2 results. My tumor was big, and my medical team wanted to see if it would shrink before surgery. Of course, once my tests showed HER2+, I had access to Perjeta. I'm glad I did the early chemo as I had a good outcome (all the active cancer gone but a tiny pocket of DCIS remained). I did end up getting a lumpectomy rather than a mastectomy because of the chemo-first approach. That meant I could avoid reconstruction and I could hang on to my boobs. That said, back in 2014, I might not have gotten Perjeta if I didn't do the neoadjuvant chemo given the national guidelines in those days.
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I started Herceptin a month after my surgery. I’m getting Taxol and Herceptin weekly for 12 weeks, then radiation and back to Herceptin every three weeks for up to a year.
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I’m sorry I’ m triple HER2 positive. I tried altering my profile so it show but I guess I didn’t get it corrected
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Fluff!! It's good to see you! It has been so long - I don't know anybody on this site anymore! Sorry to hear about your mom, but so glad to hear you are well.
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Neo-adjuvant had just come onto the horizon when I was diagnosed. My surgeon said one thing and my oncologist another. I did have a choice (well, the way I saw it anyway - I demanded the surgery first, lol). I think that has been the underlying message I have learned through all of this - trust your gut. We get so disconnected to that little inner voice.
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For those of you who had neoadjuvant chemotherapy, did you continue with only the herceptin afterwards or both herceptin and perjeta?
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I was posting about my decision making some weeks ago, so I thought I let you know.
My operation date is set, middle of January... phew. BMX with immediate expanders placement. Preventative, since I already had lumpectomy. I am scared, but I want them gone!! (being the 3rd with BC in my mothernal line, albeit with negative genetics).
Decision about radiation treatment pending. I had micromets in one sentinel node. Tumor was high near the skin, meaning away from chest wall. So I'm a bit of a border case for radiation with BMX.
I don't have Perjeta, apparently I am a border case for it, too. And it's bot approved in my country, so... well.
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JaBoo ... As geewhiz writes it so important to listen to you inner voice. Try not be scared. I was scared and so very sad early on about the BMX. My husband reframed me with "they are killing you." My cancers were widespread and in both breasts.
So find a reframe that can give you peace as you move forward. Maybe something like "walking a different path" to highlight your choice.
Best wishes for peace.
Vicky
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asknomore - being triple positive means treatment is long but the outcome for us is quite good. The people on this thread are great so stick around. When you go to your profile, make certain on each item you push "make public". It took me a couple of trials too to get everything I wanted up.
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hey everyone - I just finished my last TCH today - so happy I can’t believe I’m done - I have a question - I was told my vitamin B12 is high but my oncologist isn’t too concerned - the chemo nurses told me this - has anyone had high B12? Could this be due to the chemo? Any thoughts?I have been eating a bit more red meat and green smoothies trying to keep the rest of my counts up so I’m not sure if it could be due to that either.
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WC3 - I did both Herceptin and Perjeta for one year neoadjuvant and post surgery. I was part of a clinical trial. I'm glad you are able to continue Herceptin until surgery.
Kattis - wonderful to hear life is going so well for you! You are a great example of how life can be even better than before diagnosis. Keep enjoying life 😊
Elaine - sorry to hear about Magdalene from your chemo group. Sending hugs your way
Bheg - congrats on your last TCH!
Fluff - nice to see your post. Sorry about the challenges your mom is going through.
Jaboo - be confident in your decision as you did an amazing job researching your options and looking at your situation from every angle. It is a tough decision for sure and being scared is part of the process. I meditated and prayed daily to calm my anxiety and by the time I went to surgery I was truly at peace. I wish the same for you
I am two weeks from my annual oncology check up and having slight scan anxiety. My husband and I are leaving this Friday for a river cruise in France to celebrate our 25th anniversary. This will keep my mind off the scans but the chocolate croissants and French wine will not be good for my blood work....I still worry that everything I eat will cause recurrence. Silly I know but sometimes my mind doesn’t want to be reasonable lol
Wishing you all a wonderful week 😊
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deni1661, nothing better than a roasted chicken in France. It will ruin you forever. Skip the beef. Don’t forget to have baguettes and croque monsieur, and those incredible artisan chocolates you can find everywhere 😀. I’d go for a nice Sancerre and fois gras on toast points. The oysters are incredible!Happy anniversary
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Great, Suburbs. Now I’m hungry.
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Awesome suggestions Suburbs, I can’t wait to try all of them. I don’t care about the lab results anymore - I’m sure my MO will understand I simply could not pass up all those delicious food experiences!!!0
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Have a wonderful time Deni. If you are in the Loire enjoy a glass of lovely Vouvray! We did a river cruis summer 2017 from Amsterdam to Budapest and loved every minute....and morsel and sip. This afternoon I have an echocardiogram to determine if I can restart Herceptin. Fingers crossed.
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hi there
Awhile ago I posted about going for a second opinion with another Oncologist. I’ve been and am so glad I did. What a difference approach and communication can make!
She was much more expereinced, not only in breast cancer research but in life in general. So her approach was friendly and open. She reinforred that I have had the correct treament but in such a positive way. The other Oncologist gave me numbers and bare facts.
I will remain with my original Dr but feel relieved after having heardthings from someone else. Her words you have had a “tiny cancer” and its “very curable”. Of course the doubt will always be in the back of my mind..I’m going to stop worrying and after 3 more Herceptin I will be done.
I talked to her about Triple Positive and that didn’t concern her....as I’ve had Chemo, Surgery, and am on Letrozole and Herceptin.
i wonder if the worry will ever go away even with this more positive news.Its rather hard to believe after a year I believed my news was negative.
Thanks for listening. I don’t post much but enjoy reading how everyone is doing.
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I wasn't keen on doing chemo first and after I pressed the issue, they gave me a choice. They preferred to do chemo first and at the time I thought that maybe they know or understand something that I don't so I went with the neoadjuvant chemotherapy.
I take full responsibility for my decision but I wish I had just done surgery first. The only benefit I know of of the NAC to me is that we were able to see that it had an affect on the tumor. But that doesn't mean it had an affect on any cells that have spread and then there is that study that found evidence that NAC may increase the potential for metastasis. Some oncologists point out that older studies found no significant differences between mortality and metastasis in neoadjuvant chemo vs. adjuvant chemo but this cancer can rear it's head after 20 years and none of the studies I have seen went out that far.
By the time I have my surgery that will be almost 7 nerve wracking months...over half a year that I have had to live with the knowledge of having cancer in me and worrying it might spread, if it hasn't already. It was about a month between diagnosis and the start of chemo, my last three infusions each got delayed due to low platelets which extended my end date ended up being 6 weeks from my last infusion, originally due to some schedule thing but conveniently for them I'm a little slow to recuperate from this last one.
If there really is no difference between mortality and metastasis between neoadjuvant and adjuvant chemotherapy then why have anyone live for 7 months with cancer in them?!?!
I am not a good candidate for implants so need natural reconstruction but I lost 20lbs or 30lbs during chemo and now I don't have enough for DIEP and they don't want to do SGAP on me. For DIEP I will either have to gain the weight back before surgery, or have a seperate reconstruction surgery.
Typically I consider myself a master at gaining weight but I am not going to gorge myself on sugar, fat and carbs when I have cancer in me!
So basically NAC has just caused me a lot of anxiety and made my reconstruction more expensive and difficult. They said *maybe* they can get some A cups out of me if they do the DIEP flap during the mastectomy. No, sorry. Not good enough. No offence to women with A cups but they aren't right for my frame because I have wide hips, and it would defeat the primary point of reconstruction for me as a single 30 something who would still like a family because I would look oddly out of proportion.
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Eilly333, very happy to hear you received a second opinion and are more comfortable. Anything that reduces your anxiety is a good thing in my book. I found the worry does not go away completely, but it can diminish over time.
WC3, I hear you. I struggled for months over the neoadjuvant treatment. It made me crazy. One of the benefits was supposed to be the possibility of a lumpectomy, then an mri biopsy found more cancer and that plan was scrubbed. My original breast surgeon argued with me when I said I wanted a BMX. I found a new one. There were aspects of neoadjuvant that I obsessed over. You don’t know if you need radiation until after surgery. So 6 months of torture ensues. I rolled the dice and went with immediate reconstruction which ended up being the right call but I’m still recovering from an infection more than a year later. I often think if I had waited recovery might have been easier.
Surgery after chemo is not easy. The thing is that once you get on that breast cancer assembly line, you feel pressure to make big decisions early. The guidelines have changed but I could not get perjeta unless I did neoadjuvant chemo at the beginning of 2017. On the bright side, after surgery my pathology was clean and I avoided radiation.
I know how upset and frustrated you are. You’ve got time to find another surgeon. Also, if you can call NOLA or any other nationally recognized practice that does diep. Immediate diep recon with a small implant could be an option.
Finally, one other important point I learned about immediate recon with diep was the initial pathology. This was done immediately during my BMX while I was on the table. At that point, the pathology looked good and the reconstruction was done. Had the pathology not been good, they would not have proceeded with the diep.
Hope this helps and good luck getting through the chemo.
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Hi all,
I thought I would post an update on my previous entry for anyone in the future that finds themselves going through something similar. I'm sure other women with similiar results have posted with the same regime, but I had a hard time finding any info when I searched. To re-cap, I started off originally with this plan:
1. Neoadjuvent chemo (TCHP) to hopefully shrink the tumor
2. After six cycles of the TCHP, I switched to just Herceptin, which will keep going every three weeks to finish out one year of infusions (no break for surgery or radiation).
3. Seven weeks after TCHP, I had lumpectomy (Oct 10)
4. The plan was originally to follow surgery with radiation,
5. Radiation was to be followed by 5 years of Tamoxifen (I'm 46 and was not in menopause before chemo),
6. Tamoxifen to be followed by 5 years of Arimidex.
I spoke with my M.O. regarding my pathology on Monday morning before my re-excision & she said my pathology from surgery showed that while my cancer shrank, it didn't shrink as much as they were expecting. One of my margins wasn't clean (that margin had both IDC & DCIS). Pathology also showed extensive lymphovascular invasion, which wasn't shown in my original biopsy. 4 lymph nodes were removed and they were all clear (yay!), which leads them to believe that the cancer cells are likely traveling through my vascular (blood) system rather than my lymph system. She said around 1/3rd of women who are Triple Positive have results similar to mine after neoadjuvent chemo. I had a second surgery yesterday to try and get more of the cancer out (still waiting on pathology) and she's changed my treatment plan to accommodate the LVI.
I'm not sure if this could still change depending on pathology from my second surgery or not, but for now, I will have Perjeta added back in with the Herceptin (yuck....I had diarrhea throughout all of chemo with virtually no break from it and I'm told it was likely caused by the Perjeta). I'll still have radiation (starting soon). I've been in menopause since a few weeks after my first TCHP infusion, but to be on the safe side, I'll have a salpingo-oophorectomy then I'll go on Arimidex and will be on it for 10 year rather than starting with Tamoxifen, most likely to start after radiation. After I complete Herceptin/Perjeta, I'll start Nerlynx and will be on it for one year. I had seen some women mention Nerlynx on the boards before and was wondering what it was for. Now I know, lol.
The news was a little bit of a bummer since it means I'm at a much greater risk than originally thought for recurrence, but there's nothing that can be done to change it and I don't plan on dwelling on it. It sounds like my treatment plan evoloved into one that several other women have posted about. I just took a round about trail to get there, lol.
I hope everyone is doing great.
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I had surgery first since my tumor was measured at 15mm originally. After the operation, the pathology said 21mm. I think they would had pressed for neo-adj. chemo, if they had known it is 21mm with dcis around. I am glad the tumor is away, even if 2 operations were needed to remove it completely. I don't think I could handle neo-adjuvant. As W3C writes about weight gain needed, I am currently on it. I have decided to do preventative BMX after chemo and need a bit of weight to put back on... so I am eating quite healthy, but more and with healthy fats and even sugar (chocolate). Now I am back at my precancer weight (still under BMi 20), which is an achievement for me. My problem is I lose weight quickly when under stress. I now have a tiny belly fat to stick the Zoladex injection in. 😁
W3C I'm sorry for your anxiety with the C. in your body. I know I would feel the same. And your weight loss is very understandable with your regimen, I'm so sorry to hear it has made things more difficult for you. Why can't you do implants? I was told right away that DIEP is not an option for me, as I was seen by the BS at my lowest weight. And I have a history of lower back pain, so I didn't want any changes in the belly muscles anyway. I am going for the smallest implants since I'm really quite tiny.
Coachvicky, thank you for your kind words, you write so nicely... yes, I am thinking about "them wanting to kill me" that's why I am doing the operation. The operation is scary for me, but then, so is everything I am going through right now... I like the quote - you don't have to be brave, just show up. that's me 🙂
Deni1661, thank you. I hope I will manage according to your example. I may try meditation as well. And happy anniversary, that's awesome you are going here to Europe to celebrate!! Have a great time! I think every MO must understand that skipping french wine in France is not even an option 😀
Eily333, that is so good your 2nd opinion has given you peace of mind! I went for a 2nd opinion too and it has helped tremendously as well, mostly psychologically. I got the confirmation of my treatment and some minor suggestions which my MO gladly noted. I am looking at your stats and I think you have chosen the same path as me, if I understand it correctly? You had lumpectomy, then chemo and then a profylactic mastectomy?
I just had my 6th Taxol with H. I already have some neuropathy. I am doing the cooling of hands and feet and this time I fell asleep and my right hand slipped off from the cooling sack, damn. I am afraid I won't be able to do the whole 12 doses due to neuropathy. So far no other SE's to speak of.
oh yes, one more thing.... I started to see a psychological therapist at my centre, so she is an onco-psychologist. After the 1st session I think this can really help. I need it. Mostly to help coping with my pre-schoolers and with my anxieties and even with my DH. I was thinking of making an appointment for a long time, but the last push to call on her was, when our 15-y-o cat died last week. I cried half the night afterwards, the children were soooo sad!
What a long post, thank you ladies here for the place to speak freely. I slept through the afternoon after the taxol and now it's the middle of the night and here I am.
Have a nice time everyone.
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Hi JaBoo
Yes it sounds like we’re on similar treatments. I’m in Canada and from the reading I’ve done it’s seems fairly standard treatment.
I’m having 17 doses of Herceptin ... only 3 to go, and I have been very fortunate to have few if any symptoms...mainly aches and pains.
I choose to forgo breast reconstruction and am living flat 😉. I sometimes wear lightweight bralette depending on what I’m wearing. Its a personal decision and everyone needs to do what feels good for them ...at 69, I felt they had served me well, breast fed 3 kids and felt a bit uneven after the lumpectomy. My partner was fine with it, at 76 he’s got his own less than perfect body shape😊
Take care ever
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Suburbs, how did you get Nerlynx? My MO says it applies to late-stage cancer only.
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JaBoo - I'm sorry about your cat. My last chemo was July 22 and I still have some neuropathy in my feet while the neuropathy in my hands is very minimal at this point. I'm trying to get in for some acupuncture for the neuropathy while I'm in Houston for radiation. I'll let you know if it works, the MO and his NP here said it really works.
LaughingGull - my MO also mentioned putting me on Nerlynx when I'm done with Herceptin, though I'm not sure I want it. It is approved for early stage, particularly for node positive, hormone positive BC patients, which describes us. If your MO won't give it to you, switch.
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Good Morning, Ladies.
It is a rough ride, isn't it? What to when, for how long, and then the nagging question that Eily33 surfaces: will the worry ever go away? A friend who cared for her adult son when he had cancer shared that "a cold is never just a cold after a cancer diagnosis."
I remember four months after diagnosis, I asked my first Oncologist to re-explain my cancer diagnosis. He did and said that we throw so much at a BC Patient early on that it is no wonder it all is not understood.
Be kind to yourself. Work to accept that you made the best decision at the time given the information you had and your emotional state. I really believe that we can only look forward and not back.
JaBoo, I am so very sorry about your fur baby. That had to hurt hard. I think your fur baby gave you a great gift of grieving and realizing that talking with someone could help.
I shared with someone that BCO was my comfort place those nights I could not sleep. It was here I could find someone awake and understanding.
Warm wishes to each of you for peace, comfort, and love.
Vicky
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laughinggull, I think how neratinib is used has been changed in the past year. If you're in the US, it may be worthwhile exploring if your oncologist is out of date on knowledge or making an informed decision? Here's a recent article that discusses it.
"There is a place for neratinib in the early-stage setting for HER2-positive early-stage breast cancer."
"Similarly for neratinib, we're seeing the greatest benefit in patients who have higher-risk disease—node-positive with residual disease after neoadjuvant chemotherapy. [This is true] especially in those who have HR-positive disease. Those may be the patients to focus neratinib on." https://www.onclive.com/web-exclusives/expert-disc...
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JaBoo:
I am not a good candidate for implants because I can't have sub pectoral implants, and I think some issues with my anatomy. Also if I had issues down the line such as encapsulation or leakage I might not have the means to correct it.
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hi ladies! I haven’t posted in a while but have been reading a lot through my treatments. Y’all are all such a constant source of support and I am so grateful for you all.
I had a little hiccup with my heart and herceptin last week. Saw cardiologist and she put me on meds. In the meantime my MO wanted to do a MRI to see how well the tumor was responding. I have completed 4 or my 6 TCHP. The 4th they kept the perjeta and herceptin off to give my heart a break.
In the meantime my MRI showed “no significant response to treatment” I am so upset. I went through all of this and for nothing?!
And now I am so scared I have a cancer that chemo can’t kill?!? Is this a triple positive thing?
My MO is calling me tomorrow with what to do next Sounds like surgery soon that later. I am just so tired of all of this and now this makes it so much harder.
Thanks for listening ladies....💕💕
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Has anyone heard from SpecialK? She's never been away so long from this board. I hope everything is ok. Thanks!
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SarahNola, from what I have read on the boards, this doesn't mean you have a cancer that chemo can't treat. Someone here who has more knowledge of this will post soon. I'm so sorry that you have to go through this very rough patch. Keeping you in my thoughts.
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thank you cowgirl3!
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