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Taxol & Herceptin experiences to share?

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ruby216
ruby216 Member Posts: 22

Hi!

I met with my oncologist yesterday to discuss my upcoming chemo regimen. I'm 52. I have (had) IDC stage 1a in my left breast- triple positive. I had a single MX on 2/9/23 with reconstruction (expander). In late March I'll begin 12 weeks of weekly Taxol and Herceptin. After the 12 weeks, I'll continue the Herceptin every 3 weeks until March, 2024.

Anyone out there have the same regimen? I realize that this plan is on the less intense end of the spectrum of what is possible with breast cancer. For that I am very thankful - though I'll admit that I'm still a bit freaked out and scared. I'd love to hear about your experience. Here are a few of the things I'm wondering about:

Neuropathy - Did you use cold mitts/socks? Do you recommend?

Hair loss - I heard some people don't lose their hair on this regimen. I have long hair. Should I keep it as is and wait to see what happens? I was planning on cutting it short and then shaving after the first few treatments, but now I'm wondering if this is overkill. I am honestly not that freaked out about losing my hair, so I don't feel inclined to go through the expense and effort required with cold capping.

Exercise - prior to this stupid cancer diagnosis, I had finally gotten myself into a good exercise routine. I was going to Orangetheory 3x/week and was feeling great. What kind of exercise were you able to keep up during treatment?

I welcome any and all experiences you care to share! Thanks so much!

Comments

  • iris2022
    iris2022 Member Posts: 10
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    I could have written this entire post myself! I am also 52 with a single MX (a day later than you!), triple+, stage 1a, node negative. I haven't met with my oncologist yet, but I'm really hoping that she puts me on this treatment plan (I'm not sure the protocol for this). In the hope that she does, I have the exact same question about neuropathy and hair loss and the same thoughts about cold-capping that you do.

    I'm sorry that this doesn't answer your questions, but it's so close to my story that I had to chime in.

    Thanks to you and all who share their experiences. I started reading on this forum when I had my positive biopsy results, and it's been very helpful to gain some personal insight.



  • ruby216
    ruby216 Member Posts: 22
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    Oh my gosh, Iris! I can't believe how similar our situations are. Please keep me posted on your chemo regimen once you find out.

  • iris2022
    iris2022 Member Posts: 10
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    Thank you maggiehopely! Very helpful for sure.

    ruby - still don't know my treatment plan yet, but I'll be sure to update. How are you recovering from your surgery? I'm almost back to "normal", but still a little sore. The doctor took the drain out on Thursday, which was awesome, but I'm a little swollen now - nothing bad, just makes me a little more sore. Hope you are doing well :)


  • karcambs
    karcambs Member Posts: 2
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    Good morning ladies. Recently had lumpectomy for IDC it was a very tiny tumor caught only by MRI I have dense breast. After surgery no invasive cancer because biopsy got it all. There was DCIS on margin so had re-excision. Triple positive. Waiting for biopsy report from re-excision. Met with Oncologist prior to surgery to see if treatment was necessary before surgery because of the Her2+. He said not needed because he believed tumor was very small. He said once surgery was completed and tumor size if any is small he would recommend Taxol weekly for 12 weeks in addition to Herceptin every 3 weeks for one year. Will also need radiation and hormone therapy. I was staged 1a. I will see him again on March 17 th to discuss all the options again but hoping it’s the Bud Light treatment as he called it. My fear is side effects from all of this. Will update again after we meet. Any and all tips are appreciated. Good Lucj to everyone going through this.

  • lrolivas
    lrolivas Member Posts: 2
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    Hi Ruby216,

    Mt diagnosis was a little different. I had a lump, stage 2, left breast, HER2+ diagnosed last Jan 2021. I was on taxol, herceptin and pejeta for 12 weeks then herceptin and perjeta for the remainder of the year. My last infusion was Feb 24.

    I lost my hair in fits, meaning my hair loss hurt as I got follicultitus. I iced both my hands and feet during the 12 weeks on Taxol, and have only a little bit of neuropathy. I experienced muscle aches that were very debilitating for me, muscle cramps, a lot of diaherra!! And fatigue. So plan to do things at a slower pace and add extra time.some people get nausea but I didn't have that. Enjoy the steroids as those kept me awake the night after the infusion. So plan on getting things done then if you can't sleep.

    Do you have to have radiation? Mist say that's a cake walk. For me it was about equal to the taxol. I actually experienced nausea on radiation.

    As for hair loss you can be chilled easily so a nice soft hat is awesome to keep the cold at bay.

    With Taxol you mucous lining is wiped out. So you won't be able to tolerate anything acidic like orange juice, carbonated beverages, spicy good, Lemons lines, etc. Those will hurt and burn.

    Also keep good dental hygiene the taxol and perjeta like to wreck havoc on the gums.

    Indigestion could be an issue so make sure you have tums and peocid handy at all times.

    Exercise? They encourage that. Do what your body allows, but don't force. Walks and stretching is always good.

    Just try to cut yourself some slack, go easy, and be kind to your body.

    Lisa


  • iris2022
    iris2022 Member Posts: 10
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    Hi ladies,

    Just an update: I had my port put in a few days ago, and I meet with the doctor this week to finalize my chemo regimen. Dr told me that I could either do weekly Taxol with Herceptin (TH), or taxotere and carboplatin and Herceptin (TCH) every three weeks. I'm 99% sure that I'm going to do the TH, and I hope it's the right decision!

    karcambs, did you have your appointment with the oncologist and finalize your treatment?

    ruby, have you started your chemo yet? I believe I'm starting the last week of March.

    Thanks to all who have chimed in with your experiences...it's so helpful and much appreciated!

  • ruby216
    ruby216 Member Posts: 22
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    Iris - I start chemo on Monday, 3/27. If you go the TH route, it sounds like we will be right in step with each other!

    How was the port placement procedure for you? Local anesthetic or did they put you out? Any discomfort? I get my port this Wednesday, 3/22.


  • ruby216
    ruby216 Member Posts: 22
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    Irolivas - Thanks so much for sharing your experience! It really helps me prepare for the range of things I can expect with chemo.

  • iris2022
    iris2022 Member Posts: 10
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    Hi ruby,

    I was under light anesthesia...kind of like when you get your wisdom teeth out or a colonoscopy. I was awake for the beginning of the procedure, but I couldn't feel anything. I was just kind of out of it, then I think I fell asleep :) The prep took longer then the actual procedure. Not bad at all.

    It's been two days, and I'm a little sore, but it's really no big deal. I honestly think its the glue that's pulling on my skin that I'm feeling.

    The port itself is so creepy to me haha...it's a bump under the skin and I can also see the tube going up under my skin to just above my collarbone.

    I'll let you know once I have a start date and I may also join the March 2023 chemo thread...I think I saw one somewhere.

    Best wishes with your port placement! Don't worry about it...it's not bad at all.

    Isn't this all so crazy?!

  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023
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    Hello all!

    I am just chiming in as I am the same age (51) with a similar diagnosis. I was diagnosed with DCIS only back in early February based on some calcifications found on my annual mammogram. My MRI showed that it was a large area of DCIS so my doctors recommended a single mastectomy followed by immediate DIEP reconstruction. I had that done on March 13 and am healing well. Unfortunately, pathology turned up an occult IDC tumor that was 1 cm.PLUS, one sentinel node metastasis. None of this was seen on any of the mammograms, ultrasounds or the MRI so was a shock to all of us. Anyways. My DCIS was HER2 positive so based on that assumption that the tumor is the same biology, I think I will be offered weekly Paclitaxel plus Herceptin. They are actually retesting HER2 status now as the IDC has a lower grade and appears less aggressive.

    If it isn’t HER2 positive (unlikely), then we will do the Oncotype DX. But as it stands, it looks like the most likely path is chemo starting mid April for 12 weeks, a year of Herceptin, radiation on the lymph node areas and Tamoxifen (I am pre menopausal).

  • iris2022
    iris2022 Member Posts: 10
    edited April 2023
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    Hi iamnobird, and welcome. I'm very sorry about your surprise results. I'm sure it was a shock and I imagine that you are still processing all of this. It took me a while to process through all that was going on, but eventually I got back to my (new) normal. How are you feeling?

    I have had two Taxol/Herceptin treatments, and it has not been bad at all. I was pretty nervous for the actual treatment, but it was very easy with my port and nothing hurt/burned at all (I thought maybe the drug would hurt or burn going in). Kind of relaxing, actually! I iced my feet and hands to try to prevent neuropathy, which was the worst part - so cold!

    I've had very mild side effects, and I've been able to have a relatively normal couple weeks. I've felt mainly just "off", mostly on days three and four, but nothing too awful. The worst part of this whole experience has been the "unknown"... how would the surgery go (single MX with immediate implant), what would chemo treatment be like, side effects, etc. Also, now that I'm on a timeline, I feel much better and more able to plan my life, rather than just a big ?? in front of me. Don't know if this makes sense or not!

    I'm glad that you are healing well and I hope it continues. Keep us posted on the result of your final treatment plan. Best wishes!

  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023
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    Hi Iris.
    Thank you so much. I am feeling better lately. At first, I was very upset. But I think I am handling it all a but better every day. I had such a large, angry area of DCIS that I can’ say I was that shocked something else was there. Sometimes you just know. My right breast had developed new veins near my nipple in the weeks before my operation and I felt like something else was there. I am glad to know what I am facing and ready to get started with the next phase though. I am really glad to hear that you are tolerating the Taxil and Herceptin well. I will also ice hands and feet. I am going to cold cap as well. So I'll be freezing in general. I bought an electric throw blanket to use so I can warm up a bit.

    I think Wednesday will likely be the day I meet with the oncologist and we work out the treatment plan. And I absolutely agree with you about the unknown. That and limbo are so very tough.

    Have a great week!

  • djiris
    djiris Member Posts: 1
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    Ladies,

    Tomorrow is week 10 of 12 Taxol plus Herceptin. After that it will be Herceptin every 3 weeks. I'm getting 4 pre-meds, so no terrible reactions to the drugs. That first week the steroid had me way over energized and I got that reduced.

    Very few side effects: hair loss, slight tingling in hands, neck discomfort, steroid weight gain, indigestion.

    The doctor warned of unbearable fatigue--that was misleading. Blood counts are mostly normal. I increased the protein in my diet to 20 grams/meal based on advice from Dr. Amy on youtube.

    I'm not icing my hands or feet. I'm rinsing my mouth with salt & baking soda to prevent mouth sores. Some days food definitely tastes weird.

    I am 66, and so far have only been walking for exercise, but am anxious to get back to tennis & zumba.

  • cancercutie
    cancercutie Member Posts: 3
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    Hello ladies! I’m over the moon to have found this forum to share with actual ladies on similar journeys. I was was diagnosed through a routine mammogram in June of 2023, completed a biopsy and then lumpectomy in August of 2023 with 2 resections to follow as the cancer kept evading my medical team. It was the determined by 3 oncology surgeons recommendations that due to the location and final diagnosis (Stage 1, Grade 3, invasive ductal carcinoma contained regional, node negative but HER2 positive high grade) a unilateral, nipple sparing mastectomy was the best route. I had that done on December 19, 2023 and my oncology surgeon and plastic surgeon were able to do full silicon implant reconstruction at the time of mastectomy. I was released to start my regiment of Taxol and Herceptin once a week for 12 weeks and then continue the Herceptin every three week for an entire year 1/30/24. I had my port put in at my final lumpectomy back in September. I started my TH treatment on 1/30/2024 and finished treatment #3 on 2/13/24.

    I’m tracking my side effects on my log but don’t have a real pattern yet. My first treatment I felt nothing but a little fatigue. My second treatment I had an allergic reaction, broke out in hives and they gave me an additional Benadryl dose in my port and that sent me into a 5 hour deep sleep drool on yourself nap. When I woke I had some aches on day 3 and 4 and red pimples with white heads all over my chest, neck and head: they went away on day 6. After getting treatment 3 today, I just am wide wake and haven’t slept all night. We will see what the next couple of days hold.

    Any advice you all can give on what is to come, products you used for skin care and moisturizing, when you lost your hair if you did, wig vs. no wig, I am the first of my close friend group to experience breast cancer and while I have a close group of 30 women that I love and love me, along with an amazing husband of 29 years and three wonderfully supportive children I need some women that have been in the trenches to lean on. I love my medical team and they are great resources but not battling cancer in our shoes💕

    thank you all in advance for being so brave in sharing your stories and experiences and inspirations to those of us just getting started in this marathon of cancer survivorship!