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Newly diagnosed HR- HER2+ with questions

sarahnh
sarahnh Member Posts: 105
edited January 2022 in Just Diagnosed

Hi everyone - I was just diagnosed with HR-/HER2+ IDC/ILC, and have been reading up in these forums, seeking wisdom from people who have already been thru this. I have a couple questions I haven't been able to find answers for:

1. Is permanent chemo-brain inevitable (eg from TCHP or AC-THP)? Some of the discussion forums make it seem practically unavoidable. Has anyone out there been able to perform at the same level in a scientific/mathematical or technical profession?

2. Less important...does anyone out there have a super high HER2 (FISH) ratio? Mine is 16, and my copy number is 30. I would love to know if anyone else has those levels, and if it impacted their treatment etc.

TIA for any info and advice. I am trying to gather information to make informed choices, but finding myself basically clueless about all this on a human level.

Sarah

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021

    When it comes to side effects in general, keep in mind that the people who do not experience them aren't in here saying that. People who are dealing with chemo brain want to talk about it but people who aren't dealing with it have no reason to talk about it. People with no issues who sail through treatment usually end up leaving this forum or don't post at all. So side effects might seem more common than they actually are. (and getting chemo side effects is better than what chemo is trying to prevent you from getting)

    I work in a technical field and had no problem working during and after chemo.

  • minustwo
    minustwo Member Posts: 13,068
    edited December 2021

    I had no problem with chemo brain either. I just slept a lot during chemo & for awhile after due to the fatigue.

  • aram
    aram Member Posts: 320
    edited December 2021

    Hi Sarah,

    I am sorry you are here. I went through ACTHP this year, and I am currently only on Herceptin. I was able to continue working during chemo. I needed to take a week off after every AC due to extreme side effects, but I worked full time during THP, and now during Herceptin. I am a software consultant and I don't find my brain function has suffered. Though I am more tired than before. The only thing that I have more than before is forgetting words which is due to my chemo induced menopause.

    I don't know my Her2+ ratio unfortunately. I hope someone else have answers for you.

    Good luck.

  • olma61
    olma61 Member Posts: 1,016
    edited December 2021

    about the high ratio, this is pure speculation but I'm going to guess that a high ratio of her2 is going to make it easier for the targeted drugs to target the cancer. Maybe you can confirm this with your doctor.


  • moderators
    moderators Posts: 7,884
    edited December 2021

    Sarah, welcome to BC.org! As you can already see, our community is full of amazing members always willing to support you and share advice and experiences. Thanks for joining and posting and we look forward to hearing more from you soon!

    The Mods

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
    edited December 2021

    I am also HR-, HER2 +, and I am an engineer in tech. During the middle of chemo I had a bit of brain fog, but I think it was more caused by my blood counts being low. My RBC and platelets fell significantly from the first two infusions. By the fifth infusion, I felt the fogginess had lifted. However, I do seem to have a short attention span. I think because of the nature of my job, having to be very analytical for 10 hours a day, has helped. I also played quite a bit of video games with my kids. Other than helping with hand eye coordination, I think it kept my fingers from feeling stiff, as they did get that way from time to time.

    I don't know my HER2 ratio, but my nottingham was a 7, with the lowest number on the mitotic value. I suspect that is why the chemo completely resolved in my breast, but left a little bit in the lymph node that was positive. In any case, I am kind of okay with the post surgery result because I am on a different chemo to clean up any cells that might be lingering. Otherwise, I would have been on Herceptin and Perjeta for the remainder of the year since diagnosis. As Olma said, chemo works best on fast replicating cells. Although mine is HER2, it was slow replicating. I ended up with a grade 2. Post surgery my residual cancer burden is staged at RCB 1.

  • SmelltheRoses
    SmelltheRoses Member Posts: 3
    edited December 2021

    Hi Everyone!!

    So glad I found this site. It's very helpful so you don't feel totally alone while going through this difficult time in our lives and wanted to share my story also.

    I was diagnosed end of March 2021 with Stage 2 that went into my lymph nodes and very aggressive type. They started me on the ACT regimen right away. I moved as fast as I could to get this going and taken care of ASAP as I was very nervous. The AC was pretty brutal and I got it every other week for 8 treatments. I would get treatment on Monday and sent home with the Neulasta OnPro for the next night to release, once that happened I would start to get more tired and weaker. By Thursday I was pretty wiped and Friday to Sunday I was in bed. Next week no treatment i would come alive again thank god. I got alot of Neuropathy in my feet and fingertips so they had to adjust my dosage down twice because it was also causing pain when I opened and closed my fingers. Also getting out of my car it was like I was 90 years old and took several steps before I would stand up straight then get momentum. I worked the entire time and did get some moments of brain fog for sure but it didn't stay steady. off and on. I then went to Taxol and that did not make me have to lay down for 3 days after and i powered through it.

    Once surgery they retested my tumors and after being HER2 negative twice from the biopsies, the tumors now tested HER2 postive and now getting treated with Navilbene (chemo) just finished and Herceptin/Perjeta. After my third treatment with this Im noticing my eye twitching and still have alot of the Neuropathy in my feet and some in my fingertips. Along with some muscle cramps in my feet and sometimes calves. Does anyone else get the muscle cramps? I will be getting Hereptin/Perjeta for a full year every 3 weeks to block for any recurrance in the future.


    Thanks much

  • moderators
    moderators Posts: 7,884
    edited December 2021

    Dear SmelltheRoses,

    Welcome to the BCO community. We are so glad that you found us and reached out for support. Here are a few suggestions for further exploration. Here is a link to more information about Herceptin on our main site. You also might consider posting in the chemotherapy forum where those who have been on chemo for awhile might chime in. We also have a weekly zoom meet up for those in treatment for breast cancer it meets on Tuesdays - here is a link to registration information. Such would offer you the opportunity to ask questions to other members in real time. Let us know how we can offer you additional help.

    The Mods

  • sarahnh
    sarahnh Member Posts: 105
    edited December 2021

    Thank you to everyone who replied! It gives me some hope that the "chemobrain"/cognitive effects may not be as inevitable as it seemed. I am trying to get a realistic view of what I can expect, moving forward.

    What about neuropathy? SmelltheRoses, your post is helpful to me about what to expect with chemo. I haven't had chemo yet, so I hope you will get helpful feedback from people who have already been through it. The neuropathy sounds similar to other posts I have seen.

    Does everybody end up with some degree of permanent hand and foot neuropathy after chemo? Has anyone here managed to avoid it?

  • elainetherese
    elainetherese Member Posts: 1,625
    edited December 2021

    Hi!

    I was triple positive, but my HER2 ratio was super-high as well. It did not impact my treatment but may have made my treatment more effective. After AC + THP, there was no active cancer left in my breast or compromised lymph node. In other words, I had a pathological complete response to chemo + targeted therapy.

    I had some brain fog during AC; I'm a university professor who taught through chemo, and I had to write everything down so I could remember what I was supposed to say. Once I moved to THP, the brain fog lifted and I felt that my brain was in a better place. Of course, it was hard to eat during THP because everything tasted weird. But, it was what it was.

    Good luck with treatment! ((Hugs))

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021

    No, not everyone gets neuropathy either. I never had that. There's no side effect that affects everyone, with the possible exception of fatigue and nausea, and even nausea is usually easily managed with meds. Most people don't have long term side effects from chemo, they go away after it's over. It's just that people who do have problems are the ones who are talking about it. People without them, don't. I'd never once mentioned my complete lack of neuropathy before! :)

    There's no way to predict what chemo will be like until you have it. It's different for everyone. One thing you can do is look up the stats saying the percentages of people who report various side effects from drugs. It's always way less than I imagine. It's hard to do but there's not much point in worrying about it now. You'll just stress yourself out unnecessarily!

  • aram
    aram Member Posts: 320
    edited December 2021

    SarahNH, I didn't have any neuropathy. I iced my hands and feet during Taxol. I don't know if that was the reason or not.

  • kris_2000
    kris_2000 Member Posts: 93
    edited December 2021

    I have neuropathy but it came on gradually. My doctor asked about side effects each visit to see if the dose should be reduced. It started in my toes. Toward the end of treatment I started getting it in my fingers too but that has gone away since I stopped chemo. I still have it on my toes but it's better and it has only been a couple of months since I stopped chemo. I agree with ParakeetsRule. It's different for everyone.

  • sarahnh
    sarahnh Member Posts: 105
    edited January 2022

    Thanks! It sounds like like long term peripheral neuropathy may be more common than long-term cognitive effects. I can live with that. I finally found two people in real life (friends of friends) who had taxane-based chemo for breast cancer - both report no chemo brain, but have numbness on fingers and toes (which doesn't hold them back much). Even so, it's good to know that neuropathy is not universal!

    Aram - Can I ask what method you used for icing hands?

    ParakeetsRule - Your statement "I'd never once mentioned my complete lack of neuropathy before!" is such a good (and funny) point!

    Thanks again everyone - I have read every post in this thread carefully. And will continue to read any future posts. This is helping me understand the range of what to expect, which is so valuable to me.

  • melbo
    melbo Member Posts: 266
    edited January 2022

    I did TCHP in the summer of 2020 and finished my HP in August 2021. I had very mild neuropathy during treatment — sometimes a burning feeling in my feet and some slight tingling in my pinkies — but it was never severe and has pretty much cleared up by this point. Every now and again I feel it again, but it’s rare and clears upquickly.

  • minustwo
    minustwo Member Posts: 13,068
    edited January 2022

    Icing - You can buy all sorts of things. I used frozen peas in zip loc bags. They mold easily to body parts. I had two sets & the nurses switched them out for me 1/2 way through. Taxotere was a 60 minutes infusion. Start 30 minutes ahead and continue 30minutes after. BTW - I still love green peas, but I was never so glad to throw away anything in my life.

    Unfortunately I still got neuropathy. Neurologist said it would get 'better' up to 2 years - NOTE, better did not mean I'd be back to normal. 7 years later. Hands have mostly resolved although I still can not feel enough to swipe correctly. Feet are mostly dead blocks of ice - sometimes going up to my calves. Luckily I don't have pain. But I did not lose my fingernails.

    Fortunately no cognitive problems except in the 'heat' of treatment, and even then it was usually just fatigue.

  • Ratched28
    Ratched28 Member Posts: 7
    edited January 2022

    Hello Melbo,

    I’m curious from looking at your surgerie that you had reconstruction post lumpectomy. Can you please tell me what that entails? I’m newly diagnosed but planning for the future. Sorry if this is too personal a question. I just wasn’t aware reconstruction was an option unless you have a mastectomy. TIA.

    Deb

  • melbo
    melbo Member Posts: 266
    edited January 2022

    not too personal at all. It was actually all one surgery. The oncology surgeon took out the lump in my left breast, and then a plastic surgeon came in and did a lift and reconstruction on the left and then did a reduction and lift on the right so that I wouldn’t be lopsided.I went from a generous c cup to a generous b cup.

  • Jeet
    Jeet Member Posts: 4
    edited January 2022

    Hi There! I was diagnosed with HER2+ cancer and had Taxol and am currently having IV treatments of Herceptin. The chemo brain thing is real but I hadn't read a whole lot about it. I had just seen it barely mentioned in a few articles. I am a CPA. So, during my treatment I experienced real brain fog and there were parts of my job I just put on hold. After I was finished with Taxol the brain fog lifted pretty quickly. I've heard that for some it can be lingering but for me it wasn't. I hope it isn't for you, as well.

  • aram
    aram Member Posts: 320
    edited January 2022

    SarahNH, I bought ice mittens and socks from Amazon. They wouldn't stay cold the entire time so I also used frozen water bottles (the plastic ones, I used the same ones for the whole treatment). I would put the ice mittens and then hold the icy bottle. The same for my feet.

    P.s. there is a weekly Taxol thread with tons of useful information. I learnt a lot from amazing women there. If you haven't, maybe check that one too

  • minustwo
    minustwo Member Posts: 13,068
    edited January 2022

    Jeet - please go to 'my profile' and enter your diagnosis & treatment to date - then make the information public so it's available & we can follow along. As you join more sites, this will become ever more important.

  • sarah_78
    sarah_78 Member Posts: 119
    edited January 2022

    Hi from one Sarah to the other.

    I am going to have my 6th (last) infusion of TCHP this Friday. Thought I can help with your first question since I am working as a professor in a very mathematical field. I found out that mild exercise (walking daily something like 7500+ steps average, about 5km) helps with fatigue and concentration as well as daily 20-30 min of meditation. I continued on giving lectures but on a reduced basis (students had to watch some of the lectures from previous year when I recorded them). I sometimes can't think very sharp but I think it is mostly due to being distracted with everything going on and things that need to be planned, for example right now I have to find a surgeon and a hospital to have the surgery, then there are all the questions about what kind of surgery, radiotherapy etc. Those consume me more than chemo brain, at least that is my feeling about it.

    I think it is better to try to keep your brain active than just surrender to chemo brain or distractions. The days I give lecture feels most normal and that in turn boosts my psychology in a positive way, hope that makes sense. But then again some things provide extra stress too, one student, whom I gave to a colleague to evaluate for his final project presentation, didn't like his grade sued me and wrote "Since she is good enough to give lectures, why couldn't he evaluate me.", it kind of broke my heart, I was just trying to help him and ended up being misunderstood.

    All in all I don't think i could perform at the same level but chemo brain isn't the one to blame, for 1 week after the infusion I am rather sick, so I can't really work that well then. About 10 days before next infusion I felt mostly normal and tried to work as much as I can during that period.

    Hope this was helpful. Wish you luck with the treatment.

    Sarah

  • SmelltheRoses
    SmelltheRoses Member Posts: 3
    edited January 2022

    Hi SaraNH,

    About the Neuropathy, everyone is different. I have friends who went through the same exact treatment and did not have any Neuropathy at all so you may not get it. I unfortunately have it and even having it on my new treatment with Herceptin/Perjeta. They had to lower my dosage on the ACT chemo and it was better and now i'm going to ask of they can lower it for this treatment as well. I also walk every day to keep things moving, blood flow and circulation are key and it makes my feet feel better being active.


  • suskmr
    suskmr Member Posts: 1

    Hi,
    I am diagnosed with hr&pr (-ve) and her2+ve.Tumour is localised after checking through ct scan and last week I had a first cycle of chemo.What are the further treatment process and how long will treatment last?what are the obstacles I will face in future?

  • moderators
    moderators Posts: 7,884

    @suskmr - Welcome to Breastcancer.org! We're sorry that you haven't received responses to your posts yet. Please don't be discouraged. Sometimes it takes a little time for community members to see and respond to new posts. As this discussion where you posted was a bit old, if you'd like, you can start a new discussion on the same topic under the HER2+ (Positive) Breast Cancer forum, or ask your question again in an active thread, like this: ER-, PR-, Her2+ Roll call. That way, more members are likely to see it, and you're more likely to receive the responses and support you're looking for.

    We hope this helps! If you have any questions or need guidance on reposting or anything else, please feel free to reach out.

    Sincerely,

    The Mods