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ER-, PR-, Her2+ Roll call

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  • minustwo
    minustwo Member Posts: 13,127
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    aboraysis - I'm so glad you got rid of those horrible turtle shell expanders. Happy recovery.

  • moderators
    moderators Posts: 8,085
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    @aborayis, thank you for sharing your experience with us, and wishing you a speedy and smooth recovery!🙌

    The Mods

  • grammie2
    grammie2 Member Posts: 81
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    Hi all! New here and to BC. Chemo before surgery. Start TCHP 4/18 every three weeks for a total of 6 treatments. Curious if anyone opted to do Taxol weekly instead of every 3 weeks. I understand herceptin and perjeta are every 3 regardless. Researching it sounds like Taxol is tolerated better weekly and the outcome is the same as every 3 weeks. Thanks for any info!!

  • minustwo
    minustwo Member Posts: 13,127
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    Grammie2 -welcome but sorry you've had to join us. I had TCHP every 3 weeks so I can't speak to Taxol. In any case, be sure to ice your feet & fingers during the T&C time. It definitely helps keep your nails from detaching and some people say it also helps with neuropathy.

  • maggiehopley
    maggiehopley Member Posts: 112
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    Grammie2- My MO gave me the option of TCHP every 3 weeks, or weekly taxol x 12 with HP every 3 weeks (no carboplatin). I did the weekly taxol. It's easier on the heart and easier on the hair. Mine came out very gradually and I was only fully bald for a couple of weeks. I did not get pCR, but I don't think I would have with TCHP, either. I iced my hands and feet and got almost no neuropathy and had no problems with my nails. I am triple positive rather than only Her2 positive, but they use the same chemo regimens for both. You are actually more likely to get pCR. This month is my 2 year cancerversary and I am doing well.

  • aborayis
    aborayis Member Posts: 285
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    hi @grammie2 Welcome to this group. I’m sorry for what’s brought you here. I had TCHP for 6 rounds starting last July, and wasn’t given the option of weekly Taxol, so I can’t speak to your question. Please know that although it will likely be a rough ride, you’ve got this! Please continue to ask away about absolutely anything.

  • djschmidt1
    djschmidt1 Member Posts: 43
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    @grammie2 welcome and I too am sorry for what brings you here. I wasn’t given the option for weekly taxol and I’m prepping for my 5th of 6 rounds of THCP Monday. It’s been a rough go but I’m getting great results. I’m set for lumpectomy May 29 and we’ll see if that holds after my MRI early May. It’s a crappy deal but this forum is fantastic for support and info.

  • grammie2
    grammie2 Member Posts: 81
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    Thanks everyone. We have a chemo education visit with my oncologist Tuesday. I have a list of things to ask her. So glad I found this group.

  • aborayis
    aborayis Member Posts: 285
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    @grammie2 good luck on Tuesday! Let us know what you learn.

  • grammie2
    grammie2 Member Posts: 81
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    Hi all! The chemo education went well today and the NP was patient as I asked questions. I did ask about the weekly vs every three weeks. She said they do that if SE's are severe, a patient is elderly, or if heart or renal functions are suffering. As long as my echo checks out this week, I'm going to start the every 3 week treatment. But seems like going weekly could be an option if things are going poorly. She warned me that it is usually the 4th treatment is when people seem to be at their wits end and want to quit. I think she was trying to mentally prepare me for that. She went over a lot of the common issues along with some treatment options they can provide if certain things are persistant. And when certain things happen to call them. I didn't ask this question and wondered what experiences yall have had. I see a lot of people post about having constipation and also diarrhea. Is there generally one that happens before the other? Is there a pattern?

  • snm
    snm Member Posts: 93
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    @grammie2 thank you so much for sharing. I can't speak on the GI side effects but hope someone else can chime in. I did want to share with the group that I made an appointment in July with a tattoo artist to get 3D nipple tattoos! I'm super nervous and excited as I have never had a tattoo. The cost was a lot to my surprise ($600 both nipples) but will be covered by insurance. I am not sure how these tattoos would be affected by any future surgery like implant exchange. Anybody with tattoo experience?

  • djschmidt1
    djschmidt1 Member Posts: 43
    edited April 11
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    @grammie2 im told that we all have slightly different experiences with chemo and I am happy to share mine. They load you up on chemo days with drugs to stave off some of the side effects. The day after chemo I get a shot to regenerate white blood cells and the best advice I got was to take Claritin chemo day, shot day and the next day to help with bone pain. Days 4-6 is when I feel the worst combining nausea (controllable with meds they will prescribe) and fatigue —just general malaise.im not hungry those days much either, just eat what you can tolerate. The nausea meds cause constipation and then a day or so after (day 4) I get diarrhea. Do your best to stay hydrated as diarrhea can bring you down. I’ve learned I can’t drink enough fluids so I get an infusion of saline twice the week of chemo. Things do start to mellow out after day 6 or so. You can get weird tastes in your mouth making nothing taste good, for me this passed too. It’s tiring but doable. I’d have to agree my 4th was the hardest on me. I’ve just finished 5 of 6 and it’s being toward the end that drives me now. I hope this helps. It can be scary but totally doable. Visualize the chemo killing the cancer to get you thru. Report all side effects to your doctor so they can help you. Ask us anything. Sending love and hugs.

  • aborayis
    aborayis Member Posts: 285
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    @grammie2 It sounds like you've got a good team amd the meeting went nicely. my experience with GI issues was a flip flop of constipation for the first few days from the big dose of anti-nausea medicine they include in the infusion, followed by a few days of diarrhea. After the first cycle trial and error, both situations were easily fixes qith over the counter stuff.

    @snm Ahh!I am so excited for you, brave friend. i cant wait to heR what ita like to go theough it and how you found the results! I keep meaning to start the discussion with my PS about reconstruction and tattooing. I've gotten sidetracked talking about the implants. ill bring it up at my next appointment a month from now.

    I have a couple of questions for those further ahead in the journey than me. How did the "drop and fluff" process go for your implants? What's it like?

  • grammie2
    grammie2 Member Posts: 81
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    @djschmidt1 thanks for sharing your experiences! I normally am more on the constipated side so not sure what to expect with chemo. Is the shot for your immune system routine or something they decided you needed after the first treatment? When the NP went over the treatments with me, she did mention something they can do if the WBC count drops too low. Does the drug cause the bone pain or the drop in WBC?

    And congrats on completing #5!!! That's awesome!

  • djschmidt1
    djschmidt1 Member Posts: 43
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    @grammie2 my ONC office does it to raise the WBC. They give me a lower dose because my WBC doesn’t drop that low after chemo. The shot causes bone pain as the WBCs are generated from bone marrow…At this point in my treatment I’m having leg pain most of the time and that’s from taxotere. I’m the queen of side effects so your experience will surely differ.

  • snm
    snm Member Posts: 93
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    @aborayis my bilateral sub-pec implants one year out look natural (though no nipples). There is slight assymmetry with the cancer side having less protrusion as compared to the right. I definitely think that I had more protrusion with the expanders in than without. If I had to do it over I would ask my plastic surgeon for more protrusion bc they can look flat, especially if you exercise your chest (eg pushups). Also it would have been nice to have more cleavage but was told that cleavage is sort of predetermined by one's anatomy. I was small petite to start with..with implants I am a B cup.

  • snm
    snm Member Posts: 93
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    By the way, I am nervous about feeling pain with the nipple tattoos. Though I am numb, I can definitely feel a sharp pinch. I probably will buy some topical lidocaine prior to tattoos.

  • grammie2
    grammie2 Member Posts: 81
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    Hey! Wondering if anyone in treatment has been able to continue working. I work in an office (usually just me here) and can work from home on bad days. But hoping to be able to work in the office at least half of the time between treatments. I can ride to and from work with my hubby, but curious about driving too.

  • hopeful2020
    hopeful2020 Member Posts: 80
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    I worked from home last time I had TCHP. Yes need the bathroom close by so would be better to work from home.

    anyone have a 3 he taxol treatment? I had it for 1 he last time and this time they have it going for 3 hours. Do you see any difference?

  • minustwo
    minustwo Member Posts: 13,127
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    I drove myself across town to every TCHP treatment & back. Day 3 & 4 were not good, but I scheduled treatment on Thursday so the bad days were Sat & Sunday. I worked at least three days a week. But yes - you probably will need a bathroom close by.

    Once I got past surgery, I drove myself to radiation and worked most days. Also worked for the additional months of Herceptin.

    The rule is - nap when you feel tired. Eat whatever you can. Take protein supplements if needed.

  • djschmidt1
    djschmidt1 Member Posts: 43
    edited April 16
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    @grammie2 re:work, I work from home full time and I am on what they call intermittent fmla. I take vacation days on chemo weeks and really only feel well enough working Tuesdays (I get chemo Monday) after chemo then start the downhill slide. I work basically two weeks of the three week cycle. I’m hopeful I can work through radiation.

  • grammie2
    grammie2 Member Posts: 81
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    @minustwo Hey good to know. My treatments are on Thursdays as well. My treatment center is 45 minutes away but it might be doable. I've been soaking up all of the info here hoping to learn the tricks for the various se's. Thank you!

  • grammie2
    grammie2 Member Posts: 81
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    @djschmidt1 Your bad days seem to go along with the majority of what I've read from others. If I can work two weeks that would be awesome! Praying radiation goes well for you!!

  • snm
    snm Member Posts: 93
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    Just curious - I read an article (2023) regarding that some her 2 positive cancers might be treated without chemo? In other words, perhaps immune targeted therapy alone may help some. Has anyone heard of this?

  • hopeful2020
    hopeful2020 Member Posts: 80
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    I suppose it depends on the tumor size and how resistant the cancer is to chemo. Her2 is pretty aggressive and heard that it works well when combined with the chemo component along with HP as first line. As you move along the other lines of treatment due to resistance, possibly with the other drugs, the chemo component may not be there.

  • snm
    snm Member Posts: 93
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    @hopeful2020 yes I think you are correct. For Her2, Chemo and immune therapy are standard of care- first line. I think I read about another immune therapy drug that might be synergistic or like an addition to existing immune therapy if needed, for resistance etc.

  • hopeful2020
    hopeful2020 Member Posts: 80
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    There are multiple lines of treatments for Her2 that have several other drugs - Enhertu, TDM-1, Tucatanib, Margetuximab - I believe those are tried after HP stops working.

  • grammie2
    grammie2 Member Posts: 81
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    Hey everyone! Hadn't posted since treatment last Thursday (TCHP). Went well. Various side effects, but all generally mild. Think the mouth sores are about to rear their ugly heads. Mouth in general feels very sensitive and even soft sandwich bread feels rough. I did eat on ice during Taxil. My Onc had me come back on Tuesday for bloodwork and fluids. Magnesium was 1.7 (normal low is 1.9) so they gave me a bag of fluids with it mixed already. They have me scheduled to come again for bloodwork and fluids tomorrow (Thursday). Anyone else on a 3 week cycle do this? They said it was standard for their cancer center. WBC and RBC were good but I did see my platelets were 107 which worries me a bit. Is that common with this drug combo? Hemoglobin was good too.

  • djschmidt1
    djschmidt1 Member Posts: 43
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    hi @grammie2 im glad you’re having mild side effects. My platelets are always low so it must be this combo. They’ve never prevented me from getting treatment. I also get fluids twice after each treatment since I’ve gotten terribly dehydrated and been unable to keep myself adequately hydrated. I hope continue to have mild side effects.

  • djschmidt1
    djschmidt1 Member Posts: 43
    edited April 24
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    Oh and @grammie2 ask your doc to prescribe you magic mouthwash to get ahead of the sores.