TRIPLE POSITIVE GROUP
Comments
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morrigan, the evidence for Nerlynx, if a bit questionable, was gathered under the premise that the patients started it less than one year after finishing Herceptin; if you start later than one year, then you enter the zero evidence zone. I also looked into that vaccine trial and decided not to pursue it and take Nerlynx instead -but I couldnt get Kadcyla, which is what I was really after. I probably wouldnt have looked into Nerlynx if I had been given Kadcyla '-it was approved too late for me.
I am not suggesting that you should have pursued Nerlynx over the vaccine trial, I think in your case the vaccine trial is more interesting. What I am saying is that I doubt your MO will prescribe Nerlynx after the vaccine trial or that insurance will approve it.
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@LaughingGull - I think it depends on where/when it ends compared to my last Kadcyla. Right now it's a very tight timeline I think about 11 months since there's a month overlap. I realize I may have just tossed Nerlynx out the window but, we'll see what happens.
My MO is also looking at how many cycles of Kadcyla is correct. Everything I know says 14 but, on my Facebook group people are getting 17-18 cycles of Kadcyla (for residual disease). People that are on the longer cycles swear their MOs said 17 is the new protocol. I just had #12 today, so I asked him to check if we need to add 3 more cycles.
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Hello everyone
I just got done Round 5/6 of TCHP yesterday. I also had my first ECHO post chemo.
I have been having fluctuations of blood pressure last round and the heart rate has been high. I was on blood pressure meds for a few years before cancer diagnosis, which my PCP from another practise took me off after my blood pressure dropped after I started chemo on round 3. Then brought me back on half dose towards end of round 3 but that lowered my blood pressure as I was having big time dehydration. So I was asked to check blood pressure and then take the meds. Long story short, MO recommended meeting a cardiologist who treats onc patients. That's in 2 weeks. In the meanwhile, ECHO shows trivial pericardial effusion. MO says that's a benign finding and no need to urgently see the cardiologist. I haven't seen the report yet but was told EF was still good so heart is pumping fine. Baseline was 64%. I don't have breathing difficulties unless I exert due to exercise. Hemoglobin is low and lowered RBC count combined with fatigue is what I am assuming this to be. Kidney, liver and WBC is all good.
Anyone who had similar findings and how did it turn out? I am wondering if this is due to Herceptin which will continue till October.
Any input will help! Thanks!
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re: nerlynx
My MO did not recommend I take nerlynx. I brought it up a few times and when I was ending HP we discussed the data in depth. We ultimately decided not to go with nerlynx. I was (and still am sometimes) conflicted because I’d like to throw anything I can at this, but know that’s not always the answer.
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re: Nerlynx, I took it with very mild side effects and even I wouldn't pay for it out of pocket if my insurance hadn't paid. The data for it just isn't that great. Hell, I had a hard time justifying making my insurance pay for the Nerlynx, and almost quit early because of that. If you can get Puma to give it to you, go for it (unless you have a PCR in which case additional treatment will do more harm than good). But paying for it yourself is crazy.
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Thanks for the replies to my questions. I’m sure I’ll be asking more questions in March after my surgery/pathology report
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Hello, I have the unfortunate pleasure of joining the triple positive club. Felt a lump and got it checked, thinking I was going to feel embarrassed for being overly paranoid and that would be the end of it. Sadly one test led to another and here I am, triple positive breast cancer at 31. The fortunate thing is that I found it fairly early. I am stage 1 and had my lumpectomy back in Feb and my lymph nodes are 0/4. Right now, I have to make the decision of which oncologist and treatment to go with. I've met with two oncologists and they offer two very different chemo treatment plans for me. I really am at a loss as to which to go with. How does anyone make a decision like this?
The first doctor wants me to undergo ~6 months of chemo. For the first 3 months, it will be 12 cycles of Taxol + Herceptin + Perjeta done every week, each lasting 4 hours or so. After that it will be 4 cycles of Adriamycin + Cytoxan every 3 weeks, around 2hrs each. He did mention that the anti-HER2 therapy will go on for one year.
The second doctor suggests 6 cycles of Taxotere + Carboplatin + Herceptin every 3 weeks, with each session taking 4hrs or so. After which I will continue taking Herceptin for 11 more cycles every three weeks.
At first glance, my first instinct is to think that the 6 cycles of TCaH would be more manageable seeing as it is way less cycles total, not as frequent (more time to rest?), around a month shorter and overall just a lot less hours. However, looking through some of the threads gives me the impression that Taxotere may affect me more than Taxol would. I understand that there is no true right answer and I am fairly comfortable with either doctor. Am I right in that the weekly treatments might not necessarily be worse? My family leans towards the 2nd option as they think that the less time I spend sitting there doing chemo, the better. I'm as indecisive a person as they come and this past few months have not been easy for me.
PS. I am making some guesses with the mildly legible handwriting of the first doctor so I do hope I did not get the names wrong. -
darksparks - both regimens suggested are aggressive treatment, mainly driven by your age I would presume since your tumor was relatively small and you are node negative, and I am so sorry you find yourself here so young! Both regimens are legit choices for Her2+ breast cancer. The chemo regimens are different, but comparable in efficacy and the decision often comes down to personal choice. It is unusual for the Taxol component, with targeted therapy of Herceptin and/or Perjeta, to be given before Adriamycin/Cytoxan. Generally it is dose dense AC given every two weeks for four infusions, then weekly Taxol given with H&P for 12 weeks. H&P can't be given with the Adriamycin portion of the chemo because both the targeted therapy and the Adriamycin are cardiotoxic. Giving the Taxol first means that targeted therapy would have to be stopped - not knowing whether the ER+ or the Her2+ aspect of your cancer is more aggressive , I might hesitate to start the targeted therapy only to have to pause it. If you have a personal or family history of heart disease that should be taken into consideration, the cardiac impact of the targeted therapy drugs is usually reversible, but damage from Adriamycin can be permanent. You have decades of life in front of you so this is an important thing to think about and discuss fully with the oncologist. Your heart will be checked with an echocardiogram or MUGA scan before you start any chemo regimen that involves targeted therapy, and should be checked quarterly over the course of the year of targeted therapy. TCH(P) has less possibility for cardiac impact, is a slightly shorter time period, but Taxotere carries a risk of permanent loss of hair. This is a more rare side effect but you should be aware of it. Some choose to use cold caps to preserve hair, and these work better with this regimen than any involving Adriamycin. One of the decision points for some people is that Dr. Dennis Slamon, the researcher that brought Herceptin to its current availability and changed the game of Her2+ breast cancer, favors the TCH(P) combo. My oncologist does not personally use AC-TH(P) for his Her2+ patients because of the cardiac implications, but does use AC-T for non-Her2+ patients. Comparing Taxol to Taxotere is a little bit of apples to oranges - Taxotere is a much stronger drug, but you have a longer interval between infusions. You would receive Taxol in smaller doses, but get them weekly for a long period. Neuropathy is usually more strongly associated with Taxol than Taxotere, but both drugs can cause it. This is a difficult choice, I would ask your prospective oncologists to fully explain their rationale of one over the other. Sometimes it comes down to practice philosophy, geographic location, personal experience - but not necessarily individual patient criteria. I will say that if you look at the signature lines of people who post on this thread you will see both AC-TH(P), and TCH(P) used, and also for those with tumors smaller than 2cm, with negative nodes, you will see some who have had single agent chemo Taxol plus Herceptin for 12 weeks. Looking at signature lines might be helpful in making your decision - see what characteristics went with which regimen choice. Wishing you the best - we are here for you, please ask questions when/if you have them.
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"Generally it is dose dense AC given every two weeks for four infusions, then weekly Taxol given with H&P for 12 weeks. H&P can't be given with the Adriamycin portion of the chemo because both the targeted therapy and the Adriamycin are cardiotoxic. Giving the Taxol first means that targeted therapy would have to be stopped"
@SpecialK That does seem odd. I was not aware that they cannot be given together and will ask my oncologist about it.
Thank you for the insight and advice. With all that information thrown at me by my oncologists, I had not thought to ask about the risks that each regimen had over the other! -
darksparks,
I don't know if it matters that much whether you do AC first or T(HP) first. If you do AC first, you're delaying the targeted therapy (Herceptin + Perjeta). If you do T(HP) first, you do stop the HP to do AC.
I did AC first, and it was worse than T(HP) in that it gave me some serious chemo brain. I was working through chemo (teach at a university), and I had to write all my lectures out verbatim so I didn't lose my train of thought. However, because AC seemed harsh, T(HP) seemed much easier, give or take some diarrhea which I managed with Imodium.
I did not get serious peripheral neuropathy from T(HP), which was great, though my fingertips are still a little clumsy to this day.
My oncologist found that many of her patients struggled to get through TC + HP, but that they tolerated AC + T(HP) better. However, based on my unscientific observation of my oncologist's waiting room, many of her patients are older. (I was 46 when diagnosed.) Someone young without pre-existing conditions might breeze through TC + HP, and plenty of BC patients on this board have made it through that regimen.
Good luck!
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I'm curious as to why your one MO is suggesting Herceptin+Perjeta while the other only has Herceptin? If your Tumor was under 2cm and no nodes I'm not sure you'll get approval.
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Perhaps there are different guidelines in my country? Regardless, I will keep in mind that more is not always better as mentioned above.
I am terribly anxious about this decision and everyone's comments reassures me a little. So, thank you. -
Very true, i always forget that protocols and insurance are different. I would ask why one MO wants you to have Perjeta and the other doesn't. Perjeta can be given with both regimen.
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My guess on the Perjeta question is it is being offered neoadjuvently due to being considered high risk because of age, rather than the other clinical features of tumor size and nodal status. The P recommendation is also from the same MO that is advocating the slightly more aggressive chemo regimen.
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Hi darksparks,
I thought I would chime in here as we have similar diagnosis. I met with my oncologist prior to my surgery and based on the pathology from the biopsy, he initially thought I would follow the regime suggested by your first doctor. At that time, I was told that I was stage 1B, tumor about 7mm, grade 3. After surgery, my stage stayed the same but the tumor was slightly bigger than thought, 1cm. Because of the change in size, my oncologist changed his mind and is having me do TCH, every 3 weeks for 6 rounds and then continuing with the herceptin for a year and addingin hormone therapy. I'm going in for my 5th treatment Friday and so excited to be almost done. Most of the SE have been tolerable, especially as I know how to manege them at this point. While it still is peach fuzz, my hair is already growing back in (I didn't bother cold capping). I haven't had any neuropathy and while super exhausted, I've been able to continue working full-time. Both the surgeon and tbe oncologist have also told me that because I've gone with the most aggressive treatment options,my chance of recurrence is very slim.
Hope my experience helps with some of your questions. Good luck to you.
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Hey MsMurphy, so glad to hear that you're almost done with your chemo and that it was manageable. I look forward to counting down the cycles myself.
I've decided to go with TCH. My MO explained her rationale for picking this treatment over any of the others and it made a lot of sense to me. She also showed me the Aphinity trial findings and explained why she thinks Perjeta would not be helpful for me. She was quite disapproving of the other MO for suggesting Perjeta but she's willing to give it to me if I insist... Which I don't think I will.
I'll be starting my chemo tomorrow. I feel so unprepared for this! She even suggested starting it today but I wanted to at least have the day to prepare myself mentally. I will be cold capping and using the iced mittens/gloves. She did mention that she observed that the cold cap seems more effective for her Caucasian patients than her Asian patients (I'm ethnic Chinese), but I want to do whatever I can to try and reduce the side effects of chemo. Maybe I'll get lucky!
I took a jab in my tummy to (I believe?) suppress my ovaries, and got an ECG/ultrasound (?). The doctor said some worrying things like one of my valves appearing somewhat thick for my age and asked about my blood pressure upon seeing the size of what I think is my left atrium. The latter was alarming to me but he said it should not be an issue. I don't think I have high blood pressure? I always thought I was on the lower side. At the very least none of the nurses who took my BP (and it was taken a lot lately) said that I had high BP. Worrier that I am though, I might want to ask for further clarification on it.
Finally, they gave me something to get ahead of any allergic reaction especially since I seem to be having mild eczema problems at the moment. I also met a volunteer support BC survivor (she's triple negative and 25yrs cancer free!) who spent some time talking to me to make me feel more at ease. She's been introducing me to all the local support groups and telling me about all the help I can get should I need it.
And I am writing this at 3am, somewhat unable to sleep from anxiety but I think it's time to try to sleep once again. Wish me luck! I plan to kick some cancer ass.
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Darksparks: I am glad your cancer was diagnosed early, but of course sorry you had to join this club. I can promise you no one here felt prepared for any of it! I was so afraid of my first chemo session! But you will almost certainly get enough premeds to be pretty sleepy there. At least I didn't manage any of the reading or "productive" use of the time I had planned! Be prepared with layers, as infusions suites are chilly even without cold-capping (and they are running cold liquid into you!), find out where the heated blankets are, bring some snacks in case you don't like what they have.
I didn't cold-cap because I had long, thick, curly hair, and they didn't think it would work for me, plus I hate being cold! My hair has grown back thinner and STRAIGHT! LOL. The hair I always wanted when I was young!
Hang in there. The beginning is hard with all the unknowns. But there are loads of us here who have been in your shoes, and many more who never came here or who used to come here but only ever think about cancer when they now go to their annual check ups! Hopefully before too long you will be among the group who never think about it any more (I have one friend who had triple positive 25 years ago!)
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Hope your chemo goes smoothly darksparks! Did they have you take a steroid? I take decadron the day before, day of and day after chemo and it spikes my blood pressure, gives me insomnia and makes my heart race. Was thinking it could have an effect on your ECG. With herceptin, they should monitor your heart. I think echoes every three months is the norm or at least what my oncologist requires.
Getting diagnosed is very overwhelming and hard to wrap your head around but it all will start making sense. I found it helpful to write down questions that come to me in between appointments and go over them with my oncologist. Don't be afraid to ask for clarification and make sure to take notes as it might make sense while you are sitting in the office but gets confusing after when you try to recall it later. You'll find a pattern starts with chemo and quickly figure out what to expect. For me, the first 3-4 days I mostly want to sleep and have little energy. About a week and half after treatment, my face will be both incredibly dry and break out for a couple of days. A few days before the next treatment, I feel great but yet cry over really dumb things. My tongue always feels burnt and throws off my taste. Keeping hydrated is important but can be hard so if you find something that taste good, stock up. For me it is Hint water and milk. Others recommend coconut water. I keep a variety of foods around as I never know what my tummy will want. Generally salty foods seem to be most palatable. You might find your GI a mess, one day constipation, the next diarrhea. I've found what foods work for me and this round did not need any over the counter meds at all but don't be afraid to use them. The SE's can be frustrating but it is also temporary. You`ll get through it.
Just remember you aren't alone and this is a good place for 3am rants and lots of support. Make sure to use your personal supports too. I have a couple of girlfriends and a sister who are always there when I want to whine and are also ready to make me laugh and find the humor in all this.
Oh, I want to add that when I lost my body hair, the eczema I had on my upper arms went away and my skin all over is baby soft. It is also really great to not have to shave. Hopefully your eczema will clear up too.
Good luck! We are here for you and cheering you on.
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I had taxotere, carboplatin and herceptin over 10 year ago. And I also was prescribed decadron for day before, day of and a day or so after. In addition I was prescribed Ativan to help with the sleeplessness and it was very helpful. So you might want to think about asking about your onc prescribing it. Ativan also has some neausea reducing properties. Good luck!
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I took dexamethasone the day before chemo, but not before the ECG. The doctor wrote in the report that my left atrium is normal so I'm not sure what happened. Maybe I just have a long heart. I was prescribed lorazepam to help with insomnia but I have not needed it so far. I'll be taking more dexamethasone tonight and tomorrow morning to help with the nausea... Which thankfully isn't too bad so far. They have given me even stronger nausea meds in case the dexamethasone isn't enough but I haven't had to turn to those yet. I hope it stays that way! I definitely am fatigued. Been trying hard to keep my fluid intake up. I'm told carboplatin requires me to take in even more fluids than usual.
I'm also told day 3 might be when it starts to feel worse so I'm a little worried
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Hi all,
Just doing a check-in! Celebrating 10 years with Special K (knock on wood so I don't curse myself)
Toque-I did the same trial that Special K did, only I was in the other arm. (AE-37 right special K?) I haven't looked at updated results for a hot minute as I thought they had found there wasn't a dramatically positive result. However, just looking now, it seems like it is still in the mix of things.
I also take Metformin to prevent recurrence. I started out in the study until they kicked me out due to the fact that one side of tumor was just a teeny bit small. My PCP liked reading about the concept and said he was comfortable prescribing it and following. Plus, diabetes runs in my family so I figured I was doomed anyway lol. My oncologist told me last time that there are positive things with that especially for Her2+ folks.
Darksparks, I interviewed three oncologists. One wanted me to do the Adriamycin combo. The other two thought that was overkill and recommended taxol weekly for 12 weeks and herceptin for a year. I did the taxol one. Lots has changed though and I have to admit, I haven't followed everything totally closely.
I took a tape recorder to some of my appointments so I could go back and listen. Amazing what I would miss. And to this day, I have a notes folder on my phone that I add questions to when I see something to ask my onc.
Got my second Covid vaccine yesterday. I told my husband I feel like I am back on chemo today. All my joints ache, my feet are freezing, low grade fever, and tired lol. Hoping its better tomorrow!
Keep the faith everyone! Lost of positive vibes sent your way.
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Congratulations, Fluffqueen! It's always nice to hear from survivors checking in on their anniversary. Enjoy your day!
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fluff - hey girl! Ten years, woot woot! I am also on Metformin, my MO thinks enough out of the box to feel that it has value for me even though I am not diabetic. I take an 81mg aspirin as well for the same reason. My second vaccine is 4/1, I had no quantifiable side effects from the first (Pfizer) which I was greatly relieved about because I am allergic to everything. It has been challenging for my PS - I am allergic to many antibiotics, adhesives, topical irrigant used in surgery, etc. I had my routine MO appt and he strongly felt I needed to be vaccinated. I am now on the low end of WBC, MO feels that is just how I will be going forward, but for the last year it has been worrisome in light of Covid. I don't turn 65 until Oct, so he signed the certification for "extreme vulnerability" so I could get in. FL just opened 60-64 up so I would have gotten in the queue regardless, but one of the med centers in the area did a two day event for the vulnerable population locally and invited me to come. Yay!
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fluffqueen!
Congrats on 10 years! I always love to hear how people are doing. I'll be seven years out in July. Just got my first shot of the Pfizer vaccine last week -- made my arm sore but that was it. (The tribes in OK are vaccinating everyone.) Wondering how the second shot will feel.....
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ET - my DH had Pfizer (vaccinated at work - military) and had no issues with his second. DS had Moderna and his second vaccination made him ill, same with my BIL. Have not heard too many second shot reactions from Pfizer. You and I are on the same schedule - fingers crossed for an easy time for both ofnus
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my mom and I both got our 2nd Moderna Shot last week. No major SE, nothing like inwas expecting. Some chills, a headache and woke up during the night with sweats.
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I had my second moderna dose on Saturday. I am mid chemo but my oncologist strongly recommended it. I was so sick yesterday, had a fever of 104 that would go down to 102 with Advil for about 6 hours before hitting 104 again. Had to go to the ER, my neutrophil count was good and they agreed it was probably from the vaccine. No fever today, still have a headache and sleeping lots.
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I read data to date (yesterday) for both Pfizer and Moderna -- they really have the same percentage (possibly lower for Moderna!) of reported side effects in all categories except for the sore arm. Which is why I got mine in my hind quarters In general, folks who are older have fewer side effects than those who are younger, and those who have had COVID previously, including asymptomatic cases, get pretty wholloped. Not so unexpected. I almost certainly had one of the first cases of COVID in my area (long story, I know how I was exposed but testing was EXTREMELY limited then but Onc and others who cared for me 100% sure it was COVID) and I got hit hard by both first and second doses. So, so, so worth it though!
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Hello - I was hoping someone could help me understand/clarify a conversation I just had with the person who called confirming my 11th Herceptin treatment tomorrow. She stated that I would not be receiving an infusion, but an injection. Then she told me that the breast nurse that was standing beside her told me that she shouldn't have told me this because it was not definite that I would be receiving an injection instead of an infusion. I asked her what she meant by this and she said that it was coming down the line. I had previously reached out to someone on this forum when I was first diagnosed who went through this in 2017, but she was from Sweden. She told me she was receiving a shot instead of an infusion. Would this be the same thing? Has it been approved in the US? Has anyone else received an injection rather than an infusion. Should I be nervous? Is this the same drug? Different side effects? I had to fight to receive Herceptin instead of a biosimilar. My head is spinning again. I had an appointment with my MO last Tuesday and she did not mention this.
Interesting about the Metformin. I am wondering if I should ask for this too.
Was also called to schedule COVID vaccine, but I have decided to wait until after I am finished the 13 weeks of Herceptin. I'm so indecisive about this and not sure what the answer is. I recently read an article that said the vaccine, while receiving targeted therapy, may not be as effective. I feel like it's been difficult to go through this during COVID. So confusing.
Thanks for any clarity or advice.
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yes, a shot has been approved in place of the infusion. My understanding is that it is becoming more common. It sounds great to me! Wish we had it in Canada!
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