TRIPLE POSITIVE GROUP
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Good Morning Phelps128 - during treatment, I always called my MO with concerns as they came up. Usually, I talked to the triage nurse and they determined next steps. But it eased my mind during treatment, so that I didn’t worry. Take care.
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Any triple-positive gals done abraxane + Herceptin? And was it similar to Taxol in terms of side effects and effectiveness? My seemingly stable rash reaction to Taxol suddenly got a lot worse this week during #9 and I had to be given rescue meds. My oncologist is switching me to abraxane for the last 3 doses. I know there's a major shortage and it's horribly expensive so I'm very grateful that they were able to get a supply for me and that my insurance agreed to cover it. But I get very nervous about any kind of changes to a plan!
This is putting me off Hylecta as well. My skin has been getting increasingly bonkers and so far the Kanjinti infusions are the only things not causing problems. Despite the convenience I'm worried about how my skin would react to a lengthy painful subcutaneous injection and hesitant to make changes. I have another meeting with my MO on the 30th where maybe we can discuss that more, in addition to my questions about tamoxifan vs. OS/AI, and Nerlynx.
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hey gamzu, I had a rash on my hands from taxotere (same chemo family as taxol). It went away after the first two infusions in time for my treatment but the third time it did not and got worse. I ended up with topical steroids. It got larger everytime I got treatment. My MO said it was definitely from the taxotere so I’d assume if you’re not getting that specific chemo family it should get bettwr
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Thought this might be of interest - https://www.washingtonpost.com/technology/2021/12/21/mammogram-artificial-intelligence-cancer-prediction/
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I also had a rash during TCH, and a body wide swelling event about half way through. I ended up on a mild diuretic and some RX allergic reaction meds - specifically Atarax. My rash was also photo-sensitive and got far worse when exposed to sunlight and/or sometimes heat. I avoided super hot showers from the middle to the end of chemo. The rash resolved once I moved to Herceptin only infusions. Since Abraxane is a taxane, the rash may stay, but if it is a reaction to the additives and solvents currently in the mix, the switch to Abraxane may solve the problem. As far as the injectable targeted therapy - I participated in a vaccine trial for anti-Her2+ recurrence and received two thigh injections each time. I am an allergic personality generally - I have issues with many antibiotics and adhesives - and those injections definitely gave me large welts, and quite a reddened area - about the circumference of a drinking glass, taking about a week to dissipate. May have no bearing, but if you are prone to this type of reaction it might be wise to stick with what you know is not causing problems. FWIW, when I switched to Herceptin only the time spent at the infusion center was far shorter. Fewer blood draws, my appointment was with the PA usually, and there were no side effects to discuss.
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Thanks, SpecialK. I am also getting relapsing rashes, usually the night after chemo and the following night, and hot showers do seem to bring it out again too. They aren't itchy and don't appear to be causing issues, though the one this Friday night did start creeping up my neck and face. And we thought the immediate Taxol infusion rash was stable until suddenly it wasn't. So I don't know. I've also become allergic to Tegaderm dressings and this weekend my arms broke out after taking Sudafed PE, which was bizarre. Sometimes the Zoladex implant also seems to be causing spots. I just feel like my immune system has gone nutso and if the Kanjinti isn't causing problems I don't think I want to switch to something that might, even if it is a bit quicker.
First abraxane tomorrow. I hope they are still planning to pre-medicate me, because while I have high hopes, you have a good point that we aren't 100% sure if it's the Cremophor suspension or the taxane itself causing the issues. I also just made my appointment for my initial radiation consult, which..AGGGHGHH.
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gamzu - I would certainly request the usual pre-meds even with the switch to Abraxane - I got oral Tylenol, Pepcid, Benadryl, Aloxi, and Dexamethasone each and every time until I went to Herceptin only. I think once your system initiates an inflammatory state of reaction almost everything causes a problem. It will eventually calm down. Sorry about the rads piling on - the mid-point of treatment makes it seem rather endless...but, there will be a time when this is all in the rearview mirror! Hang in there! P.S. - I would show you my Tegaderm reaction but it would scare the pants off you - the photo actually made my new reconstructive surgeon say OMG out loud! It was a reaction caused by the PS I fired when he decided to use it despite my previous reactions to it.
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Well, I went in today determined to request pre-meds with the abraxane but my MO assured me it would be fine without it so we gave it a go and she was right. No reaction at all. Also wasn't given famotidine as I was assured I didn't need that either. We'll see. Fortunately, if that turns out to be wrong, I have a big bottle of Pepcid at home and can easily correct the problem after the fact.
I have never done this without pre-meds so I have no idea what to expect this week as there won't be the "honeymoon" period. The Herceptin infusion gave me a slight headache which I hadn't noticed before. I am also hoping this means the end of steroid insomnia and all the flushing and acne.
I can't wait to get my next EOB to see how much the abraxane costs in comparison. Because for all the hours and meds and rigmarole we have gone through trying to get the Taxol into my body, to suddenly be given this option that requires none of that is pretty mind-bending. Literally the nurse turned it on, it ran 30 minutes, she flushed the line, and I went home. They need to figure something out so that this is a first-line option for everyone. Absurd.
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I discussed Nerlynx with my MO today and her hope is that enhertu or margetuximab will be approved for early-stage patients like me by the time I finish my year of Herceptin because the side effect profile is more tolerable. But if that doesn't happen, she was open to the idea of Nerlynx because I am young and a "compliant patient" (whatever that means). We're going to discuss it more when the time approaches and see if the menu options have changed.
I also asked about tamoxifen vs. ovarian suppression/aromatase inhibitor and her plan for me is tamoxifen + OS. I haven't looked into that combination at all and was only vaguely aware of it so I need to do some reading.
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i had a follow up with my Onc on Wednesday. I'm pushing for Nerlynx, he doesn't think it's necessary. I understand the hesitancy, there is 0 study of Nerlynx after Kadcyla, so there's no guarantee that there is any benefit or if the benefit is substantial enough to overcome the side effects.
He said, he's not 100% opposed if I want to do it. He'll see if my insurance will cover it, since it's after Kadcyla AND I would be starting 11 months after finishing Kadcyla.
So far I've done 6 TCHP, 1 HP, BMX, 25 sessions of radiation, 14 Kadcyla, Tamoxifen and, I'm involved in a vaccine trial to prevent HER2+ recurrence. After all that, Nerlynx might be irrelevant and overkill. However, if it comes back and I don't do Nerlynx, I know I'll be hating myself because I didn't do everything available to me.
Part of me says, just give it a try, I tolerated everything else really well so I might handle Nerlynx well too. The other part is saying you've been out of active treatment for 8 months now and feeling pretty good, do I really want to get back on a drug that can do some damage?
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Hi Gamzu and Morrigan,
I am on cycle 3 of TCHP, so I have a long way to go.
I am hoping that I have a PCR, but I know that I may not.
Do you think that they will start to use Enhertu after Kadcyla? I also asked about Nerlynx and I was told that the benefit does not outweigh the side effects.
Morrigan- how is the vaccine trial going? I have reached out to Rutgers about the trial. I want to be prepared now, so I don't feel overly stressed after surgery trying to figure out my next move
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Phelps - the trial is going really well. I've had my 2nd booster already, I go for the final one in March. The Side Effects are minimal, a fever, chills and some body aches a few hours after injection. Normally goes away with Tylenol and back to normal the next day.
The only downside is the DC-1 vaccine is very intrusive, they have to inject right into the lymphnode and, since most of us have had lymphnodes removed from our arms, they use the groin.
It would be nice if Enhertu gets approved for Early Stage. I'm not sure where they are in testing. I think there's normally a few years between MBC approval and Early Stage approval.
If anything I think Enhertu might replace Kadcyla but, that is a long way off.
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Good morning!
I likely will try neratnib. I mentioned it to my oncologist and he was open to it. He did say it might be over treatment. It would be covered for me, so I think I would be willing to try it and if I can’t handle it then I can’t.
I was reading about Her2 subtypes to help me make surgical and radiation decisions. I’m not sure I’ll end up with a tumour boost bc I ended up going with oncoplastic reduction and I don’t know if the tumour bed will be easily identifiable. I read guidelines and tumour boost doesn’t take into consideration subtypes.
I thought I would share this literature review incase others are seeking out that kind of info. I found it informative- but still not a tone of information on radiation and subtype in general. I do however feel better if I miss it and then I get neratnib.
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Thank you!!
morrigan- I know that they are doing a trial now for early stage adjuvant open-label Kadcyla vs enhertu. I am going to try to get on this one or vaccine trial if I don't have a PCR.
Im glad the vaccine trial is not too bad on you. I read through the consent and saw the groin lymph infusions.1982M- I will look at the literature. I need to learn more about the subtypes. Thank you for this
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When did you all start hormone therapy after chemo/surgery/rads? My MO is waiting until after radiation is done but it sounds like some people start at the same time.
I thought I would be happy after chemo finished but my mood has been really dark this week. I am convinced that ultimately none of this will make a difference, that we probably missed something only checking 1 sentinel node and no other scans, and that it's going to come back and I won't see 50. And that I'll never get married or have kids. I was feeling pretty positive just a few weeks ago and now it's like a 180. I don't know if it's me, the drugs, or both. I've signed up for a local support group that meets regularly through my cancer center as a first step. I was thinking I could get by without that but now I don't think so. My friends are great but they can't understand this stuff. And I don't want them to have to.
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i am so sorry you’re feeling this way, gamzu. This diagnosis and treatment process sure derails life plans and makes things seem so …. Frustrating that we are not as easily able to go on with the way things were or the way we wanted. More out of control in our life… everything feels like we have less time. Less power.
Even taking back the power we can have, in little and big ways, can give some consolation but we have a lot of loss to deal with.
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Gamzu,
I'm glad you signed up for a support group. I went through a dark period after chemo too. Your not alone. I get you how no one understands. I'm not in the same boat as I'm married with kids, but juggling it all and a career feels so overwhelming.
My MO wanted to start me after radiation and I requested to start after my next surgery before radiation. The sooner I start the sooner I can finish.
I searched for guidelines and briefly read some research and basically found there isn't enough info to say what's best practice.
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Thanks, guys. I think the support group is going to be helpful; the session last night was good. I may join the one specifically for young people, too. I'm sure I don't need to tell anyone in this thread, but 34 and a BC patient is a lonely place to be. I also joined the Young Survival Coalition group on Facebook.
I had my initial radiation consult today and the plan is 19 sessions: 15 radiating the whole breast and 4 focused on the tumor site. The RO wants to do it in the prone position, to better protect my lung and chest wall. I want that too, but remembering how uncomfortable MRIs have been lying in that position, I'm not too enthusiastic. Having my arms curled up above my head that long gives me numbness in some of my fingers and shoulder pain. Hopefully because it's shorter than an MRI it should be better, but ugh. The planning session is next Friday and then I guess we start after that, though the RO said we could take an extra week if I needed a break. I have my first Herceptin-only infusion tomorrow, and my 3-month echo on Friday.
This just seems never ending.
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gamzu,
Glad to hear you're joining some support groups! Yeah, you're too young for breast cancer.
Radiation was a bit dehumanizing for me. I felt like a piece of meat on the table while the techs kept shoving my body around until it was in exactly the right position. You're right, though, it's way shorter than an MRI. That should help.
Yep, it seems like it never ends. Here I am, seven years out, and I still visit the oncology clinic every month to get Zoladex (so I can take an AI, as I'm pre-menopausal). But, there's a light at the end of the tunnel -- my oncologist has ordered the Breast Cancer Index test to determine whether I can stop hormonal therapy in February. Yay.
((Hugs)) It will get better.
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Hi all,
tests turned out clear! Lymph nodes on the right side were almost back to normal. They did a ct scan also to get to the deeper nodes they can’t see on an ultrasound. That was good too.The test I flunked, however, was gallbladder. That is coming out Thursday, unless I chicken out. I’m worried whole I might feel better on some things, other things may now be an issue.
was just reading up on the Neuvax vaccine, since special k and I did that study. Pretty interesting!
Hope your new year is starting out strong and healthy0 -
Yay, fluffqueen! I'm glad to hear there's nothing going on in your nodes!
I had my gallbladder removed 17 years ago, and I don't miss it. I can't each super-rich foods anymore (think of sauces made with heavy cream), but I don't really need those foods in my life anyways. (If I do eat such foods, I tend to have explosive D.)
It was an easy surgery, but I remember feeling more tired than usual for about a month. Then, I felt normal. ((Hugs)) It's one thing after another, isn't it?
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Hi Fluffqueen01 - I had my gallbladder out 10 years ago. It was done laparoscopically - 4 small incisions. It was outpatient. I went back to work a couple of days later. Low fat diet works best for me. I hope,it goes easy for you. Take care
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Hi @ElaineTherese, my insurance doesn't cover the Breast Cancer Index test, but my oncologist said sometimes the company will offer a coupon or discount so he ordered it anyway. Apparently it is still considered "experimental" for HER2+
I read some negative reviews of biotheranostics on Better Business Bureau implying bait and switch tactics. I am curious if your insurance covers it or if the company has contacted you about payment issues.
You can send private message if you prefer, thanks
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Hi TriplePositiveP!
My oncologist has figured out how to get my insurance company to cover the Breast Cancer Index test. She's actually good about that; she managed to get my Prolia covered as well.
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I've debated for a week whether to post this question and have decided to just go for it. I had my repeat echo last week. Something about it felt "off." Last time, I was on the exam bed while the tech sat on a stool at the computer next to the bed and had me lay on my left side (which had me facing toward her). This time, the setup was "upside down" so when I was on my left side, I was facing the wall and the tech had to reach over me with the wand. I think it was the exact same room as last time so I'm not sure why it changed around. The computer was on wheels so I have no idea why it wasn't just moved to the other end of the bed so I wouldn't have to face the wall.
Last time the tech was a woman. This time it was a man probably in his 50s, much older than me. He sat on the exam bed with me instead of on a stool at the computer and we were touching hip-to-hip with my waist and one arm basically trapped in his armpit while he leaned over me with the transducer. This is only my second-ever echo in my life, so I don't know what's normal and I didn't say anything. He didn't grope me or anything but having him basically sitting on top of me felt off. Is this how it's supposed to be? It definitely wasn't that way the first time and something about it made me uncomfortable. But this cancer process has been so filled with unfamiliar things that make me uncomfortable and that I'd rather not be doing but have to anyway that my radar for what is genuinely not as it should be is all messed up. Has anyone else had an echo like that? I don't want to make a big deal of anything and would be happy with just not seeing that tech again, but if that is how some echoes are then whatever. Just another thing to grit my teeth and get through.
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Gamzu, I went from HP to Kadcyla and have had 4 echos. I'll have another three I think before active treatment is done.
Your experience is definitely outside of the norm compared to mine. The room set up sounds the same. At my hospital, there is a table/bed. The tech has me lay just a little bit on my left with my left arm raised up. I get three monitors (stickers) on the left and right of my heart near the shoulders and one below the rib cage near my abdomen. The machine is on a small cart in front of where I am facing, and there is a stool for the tech to sit on. Near the end of the procedure, depending on the tech, he or she might drop a section of the table to get to that area below my ribs.
At no time does the technician ever hover above me. In fact when I was adjusting myself, I was about to just take my whole top down because I thought the tech was being too delicate about it. The tech (guy) said it wasn't necessary and he was trying not to be rude. He was attempting to cover up my breast so it wouldn't be exposed to him while making the adjustments. That's why he was being so delicate.
I hope this doesn't distress you, but that whole situation sounds shady to me. Hopefully someone else will chime in and correct me.
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Sounds totally inappropriate to me. I'd report him to HR and your primary and oncologist. You don't know how many other women have also had this experience and have kept quiet. He NEVER should sit on the table with you.
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The first place I went to had me lay in my left side and that faced the wall, the tech (female) had to reach over me. I did that place about 3 times all in all (COVID and insurance changes forced me to go to another place). I've done laying in my left side, facing the person as well, which I prefer because I get to look at the monitor instead of the wall. Mostly I've had women but, there was a male tech in training at one visit and they asked if I was OK with it. I agreed because, I don't really care anymore.
It may not be the "norm" but it isn't unusual either. Might just that this is the best way for that tech, or what they're used to.
If you feel uncomfortable I would suggest you bring it up and you can certainly request a female tech if that makes you more comfortable. However, I've had it done both ways so I would say the exam was legit.
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Thanks to all of you. Morrigan, did the techs sit on the bed with you? Reaching over me would have been fine (though I would have wondered at the dumb setup, with the computer on wheels) but sitting with me on the bed with my butt basically pressed up against his side and pinned under his armpit was pretty weird to me.
I just sent an email to the cardiology office sharing my concerns and requesting either a female tech for next time or to have a second person in the room. Frankly, if that is a "normal" way they do things, to have male techs sitting on the exam beds pressed up against female patients while alone in the room with them, I am astonished that they don't explain that in advance or see any way it could make someone uncomfortable or be misconstrued.
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@gamzu I went back and reread your post and yeah, that is how she did it. I remember her hip being up on the bench next to mine. This actually happened with 2 different women techs at Lakeside (facing away). I don't think the 3rd tech did it and I remember wondering if she was doing it right.
While your experience matches mine, it did make you uncomfortable and. i think you should mention it to the place. If nothing else just to make sure you don't have him again.
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