TRIPLE POSITIVE GROUP
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Jstarling - I pray your echo went well and you can resume Herceptin.
Jaboo I am so sorry about your cat. On top of everything else you are going through your many tears are certainly understandable. I think it’s wonderful you are seeing an onco-psychologist. I feel it is so very important to have as much support as possible and a professional can help guide you where friends and family might not know how to. Sending gentle hugs your way 😊
Eilly333 - I am happy you had a good experience with your second opinion. It definitely helps to have a different perspective and also to experience the different physician styles. My first MO was all business, only offered one treatment option and didn’t seem to like all my questions. My current MO is more warm and fuzzy, gives me detailed explanations and treats me like an individual instead of a number. I don’t think the worry ever completely goes away but I have found peace in knowing that I did everything possible to eradicate the cancer, I am cancer free today and I choose to push the worry out of my head because I refuse to let cancer control my life. Now ask me in 2 weeks if I’m worried when I go for my yearly scans and I will say yes but I know the worry will be short lived! I also want to say I really admire your decision not to do reconstruction. You have a very positive attitude and great confidence.
WC3 - sorry you are going through this back and forth with treatment and the anxiety of still having cancer in your body. I would feel the same. I have to believe though that the treatments you were able to have did keep the cancer from spreading. I wish it wasn’t so difficult for you, I will keep you in my prayers.
Hybrids - I’m sorry you didn’t get the results you were hoping for from the first pathology report but I pray the second surgery results in better margins. It’s great the nodes were clear. Your “let’s move forward” attitude is an inspiration for all of us as it’s easy to dwell on the “what if’s” which is so mentally draining and stressful.
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Hi LaughingGull. Nerlynx was approved late in 2017 for extended adjuvant treatment of early HER2 +BC within 12 months after completing a year of Herceptin. I started in early 2018 and stopped over the summer. I lasted about 6 months on it. Others are doing fine on it so please don’t let my experience discourage you from pursuing treatment. The drug is used for late stage HER2+ disease as well. Perhaps you may want to get another opinion. Doctors have been reluctant to prescribe as the benefit is only seen so far to be about a 1 to 2% improvement and frankly I can’t recall the endpoint. Also, the side effects, if one experiences them, are pretty brutal. I found nerlynx worse than TCHP probably because I was just starting to feel better and it progressively took me down again. Good luck with your decision. I had several discussions with my MO before we agreed to proceed. Eyes wide open. At the end we agreed that 6 months was better than none and have not looked back.0
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WC3, in 2017 I had 6 cycles of TCHP and finished the year with Herceptin only. It was not suggested to continue on with perjeta and Herceptin. Others have had continuing perjeta treatment with their year of Herceptin. I did not tolerate the perjeta well so even if it had been approved by the FDA then, I could not have tolerated it due to the severe skin rash.
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CowGirl
SpecialK last posted on 18 October on another topic and 10 October on a different topic.
I sent her a private message.
Will keep all posted.
Vicky
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Special K, my onco and surgeon do not support any scans. The surgeon does a manual check and that’s it. Should I push for more? I also asked onco about Nerlyx and he said he doesn’t think it’s worth the diarrhea. I’m afraid of a reoccurrence, but aren’t we all? What are your thoughts
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sarahnola, I am thinking of you. I don’t have any experience in what you are going through but will be interested in what others say.
Everything we all have gone through since our DX and it just seems like the twist and turns never end. The thing that seems to be constant with this group, is we emerge with greater resolve to beat this damn thing. Sure, we all have our moments of despair but I have read your past posts and you are a strong lady. I am thinking of you, sending you hugs and know you will make it through this next twist.
Stay strong,
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Jaboo, I'm so sorry about your cat.
SaraNola, I'm sorry about what you're going through. I know it must be scary.
I'm back in the infusion center today, getting Herceptin. Perjeta has been added back also. I guess I'll go back to spending lots of time in the bathroom now 😢it's better than the alternative though I'm ready to fight it with everything available.
Pathology on thesecond surgery came back with clean margins. Yay!
I hope everyone is doing well.
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What date do you use as your cancer free anniversary? From your surgery or from end of chemo?
I had labs last week and I see my onco on Tuesday for my 3 month apt, 3 months since herceptin ended. I'm super nervous because he doesn't do scans either, just blood work. I've had this weird feeling on my spine, no pain at all, just a definite pressure feeling like someones pressing on my spine. I've had this since January, had an exray and mri with nothing showing ( but my cancer never showed up on MRIs in the first place). Went to PT in case it was some muscle thing from recon. But I still have it.
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LTWJ, same question here, how and when to claim NED and based on what?
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Just like to thank everyone for all the help I have received here!
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Happy to report that I had a great Echocardiogram and after two months of waiting I had Herceptin today
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Congratulations Jstarling!
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My MO does not do scans either, interested to hear that your MO does too check. I also freak out everytime I have a pain.
Crazy phone, i just typed out a long response to people and it deleted it. 😡
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Haven't posted in a while. You know what we always say...you only hear from those with issues, not those who are doing great. I had posted previously about being on/off Tamoxifen due to multiple s/e's. Finally gave up for the last time but my new onco said he would knock his sister on the head for quitting and placed me on exemestane. I can honestly say I'm doing pretty darned good on it, other than my fingers swelling, which is not uncommon. Every time I restarted (after stopping) Tamo, I lost massive amounts of hair but when I started exemestane, I never lost any hair. That was 3 months ago. Just wanted to let those who may be interested know that so far, I'm in the AI camp
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Happy to hear that exemestane (Aromasin) is working OK for you, Blownaway. I'm also on exemestane, and I'm doing pretty well after 3.5 years.
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Hi all - I'm so sorry that anyone was worried about where I was! I should have posted that I would be away for a bit, but would be back. I actually had a surprise dental issue, that prompted some concern that I had either osteonecrosis of the upper left jaw, or possible bone mets. I didn't wan't to discuss this here until I had definitive answers, but then I left for a week of vacation with my BFF and returned just in time for an out of town wedding that my son was in (his elementary school BFF, whose parents are our good friends), so it was trips to and from the airport and also my DH's birthday weekend! Phew! Anyway on the dental front, I had a cracked sealant on a back upper molar right behind an old crown. My dentist repaired it and used a light blocking plate when doing this. A week or so later I had a routine cleaning and they noticed I appeared to have an infected area above the crown where the plate was used during the repair. I thought maybe the plate had irritated the gum. After a regular x-ray showed nothing unusual, my dentist sent me to an endodontist, because this was adjacent to the crown. The endodontist examined me briefly and took the same film, looked normal, but then he used the little tool with the sharp hook and when he stuck it into the gum above the crown the hook kept going, meeting no bone resistance. A regional CT of that quadrant showed an absence of bone altogether - which was a bit shocking. Next stop was the oral surgeon - he did a full CT, we are relieved that this appears to be isolated to this quadrant. Because I have been on aromatase inhibitors since 2011, which can reduce bone density, and Prolia since 2012, which can cause bone death (ONJ), I needed to confer with my oncologist, for his opinion and because he was the prescriber of both. As of now, no more Femara or Prolia. I am having an extraction in week with a bone graft, but the current thinking is this isn't mets or ONJ. All are cautiously optimistic that I can get an anchor and implant in place over the next six months if the graft takes and I can heal. I have had some issues with that during surgical treatment for breast cancer so it is a little worrisome, but we will have to see how this goes. I am due for a DEXA in January and I’m not sure how this will play out since I have density issues, so I need to up my diet and exercise game since I’m now flying without a net!
Again, sorry to have worried anyone - I feel missed! If I step away again I will put the disclaimer here so ya’ll know that I’m OK - just taking a time out! I didn’t want to speculate about this situation before I had more info because I try to minimize introducing any issue that will cause any of you to have worry about yourselves.
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On the NED question, most people use their surgery date because it is usually regarded as the removal of known cancer.
On the scan question, for those who are stage 1 or node negative, I have found that many oncologists don't scan routinely. For higher stage or higher risk patients, usually because patients are node positive, had big tumors, bad margins, or did not achieve pCR, scans are more common, but a number of oncologists don't scan in the absence of symptoms. Some oncs will scan routinely. Mine did - pre-chemo, post-chemo, post-Herceptin, and post-BCI test, and he has also scanned for symptoms, I have had four recurrence scares - including this most recent one.The general rule of thumb is pain, that is potentially cancer related, that doesn't resolve after 2-3 weeks. Nobody is paying as close attention to you as YOU, but it is also important to try to balance recurrence worry with risk assessment - easy to say, often hard to do. Honestly, figuring out how to move forward post-treatment is one of the hardest things about breast cancer.
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Sorry about your mouth 😘. Thank you for sharing your experiences and knowledge. You are a blessing to many
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bird - thanks, what a sweet thing to say! I think and hope things with my tooth and jaw will be fine, and it could be so much worse, right? I'm feeling lucky that it is not - and trying to maintain perspective.
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SpecialK, thank you for checking in and letting us know how you are doing. I wish I had answers for you the way that you had answers for me during some of my darkest days. I’m sending all that collective goodwill back to you and hoping you have a speedy recovery. All the best
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SpecialK, thank you very much for sharing your experiences and knowledge
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specialK I am glad to know it wasn’t a case of bone MET.... best wishes with all you have to do
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I had a 1inch lump which I had surgery in aug. they got it all. no lymph nodes were affected. what I said in previous post was they want 4 cycles of chemo then 12 weeks of Herceptin and other stuff. problem I having is should I keep doing chemo? I really dont want to do it at all. I was reading where cannabis oil works wonders. it would be better all around to do that. I did feel nausea even with all the anti nausea meds and nov 12 is another treatment. really dont want to feel that nausea anymore. on top of all this I have a fallen bladder due to hysterectomy back in 2001. I cant get surgery for that until all this chemo is done. essentially chemo may help but do I really want to go through all the symptoms that I have read people go through? it may come back in a breast or somewhere else. having chemo doesnt guarantee anything. I do not see myself doing chemo and maybe having to do again in the future. any suggestions?
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Thanks guys! It’s going to be ok - I will deal regardless - it’s what we do
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Hi SpecialK,
Popped in to read some posts and saw people worried for you. I am glad to see you are ok...:) I have had some tooth problems lately as well. For months I have been dealing with a root canal and eating 3 doses of antibiotics due to multiple inflammations. I am going back to the dentist tomorrow, it should all be done but still have a tooth ace. I also had to pull a tooth on the other side after treatment and wanted to start the process of a titanium screw but my dentist says I should not due to the Zometa Acid given every 6 months. Well such is life. A friend of a friend passed away of cancer (stomach) not related to breast cancer a couple of days ago which caused me to totally freak out thinking of recurrence once again. This illness really is a rollercoaster ride. My advice to myself is to not think about it too much but having a back pain for a couple of weeks makes me go nuts. I have had back pains many times in my life so this might just be another one of those and nothing to do with cancer. I will have it checked if it does not go away in the next month. Well, just so all the new ones on the board understand that most people that are well are not on here very much anymore...most people are doing very well...just living life not thinking about cancer every day..lots of love to all.
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Hi marionkluges!
Triple positive breast cancer is aggressive, and there is no evidence that cannabis oil can cure it (though it might help with some of the side effects of chemo). Significantly, targeted therapies like Herceptin have reduced the rate of recurrence and mortality in patients with triple positive. Unfortunately, Herceptin is usually given with chemo, so most triple positive patients get chemo. Please talk to your doctor about how your first dose of AC went and about the nausea you're enduring. If your doctor wants you to finish your chemo, he or she needs to be there to help you with your side effects. ((Hugs))
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Raise your hands if you have dense breasts!
I just found out I do ( I "assumed" so since I've had two kiddos whom I breastfed for 15 months each, and I'm not that young anymore (ha), but they still look pretty good. Is that even is a correlation that they are dense. ..?? Probably not. lol! Just asked about this at my last appt with my oncologist, and sure enough.: dense. (Why didn't they tell me this, I wonder?)
The surgeon who did my lumpectomy told me afterwards I probably would not need any further treatment at all, so I know he's going to do his best to talk me out of my new idea: double mastectomy....Turns out I was borderline for chemo...Decided to attack! (Just completed #9 of 12 taxols today.) But I don't think I can't take the years of worrying after every mammo from here on out. Also, radiation scares me : I've had only 2 mammos - once at 44, and then this killer one four years after that (due to no family history of ANY cancer, and my fear/distrust of radiation.... ironic!). I've gotten it in my head that if I have dense breasts, gonna go for the mastectomy.
So, anyone else make this decision based on dense breasts??? I know this isn't a light decision.
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umakemehappy: I was told that I have dense breasts after my mammo (also only the second one I've ever had, for the same reasons as you). I've told the surgeon all along that I want a LX if possible, just had it done Thursday (I did neoadjuvant chemo). She said she removed more tissue than expected but is confident she got it all (still waiting on pathology but the lymph nodes she removed were clear). My primary reason is that I wanted the least-major surgery I could get away with. The incisions look great, everything's healing great, no pain, no troubles,no disfigurement (at least not at the moment, still have radiation ahead) and I'm going back to work Thursday, a week earlier than she originally told me. I'm 100% confident that I made the right decision for me. The future will hold what it holds. I'll be ready for whatever that may be.
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Hello ElaineTherese
I was interested in you first line that Triple Positive breast cancer is agressive.
I was diagnosed with Breast Cancer about this time last year and only in the last while did I realize there was a sub type “triple positive” so I joined this group. However I have not been told mine is aggresive. In fact I recently had a second opinion from a very experienced oncologist who told me otherwise.
I specifically went to her to discuss all the talk of High Risk and Crosstalk. She indicated that I had a very small tumor, (0.6cm) no positive nodes. We discussed my treatment of Taxol, Herceptin and Letrozole and felt I would respond well. (And I’ve had a double prophylactic mastectomy to reduce my worry)
She indicated there are 2 drivers of my cancer..the HER2+ and the ER/PR + but that the treatment would handle both.
Would you be able to clarify for my why you inidcated it was aggressive ....because as a general comment its of a concern for me?
Thanks, Eileen
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Hi everybody. There is a good Ted talks video on the topic of dense breasts. I was shocked to learn I had dense breasts as my reports never indicated such. That letter with a pink ribbon and good to go message was not my friend. When I saw the actual reports I realized that had I been informed, I would have seen a surgeon and pursued more imaging. Get a copy of your reports, the real ones,and follow up with an expert. That is my best advice.
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