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ER-, PR-, Her2+ Roll call

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  • djschmidt1
    djschmidt1 Member Posts: 46
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    for those that have been through chemo what was your recovery timeline like once you finished chemo? I’m three weeks out from my last chemo and still have muscle pain, neuropathy in fingers and feet, general fatigue and the mucus production is annoying. Oh now my eyes are watering as well. My oncologist said 3-6 weeks for most of it. Just curious about anyone else’s experience. Maybe I’m just old and weak but I was really hoping to bounce back faster…

  • snm
    snm Member Posts: 95
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    @aborayis and @bailey.boo I too have thyroid issues. I was diagnosed with Graves a bit before my breast cancer diagnosis. I had gotten covid vaccine and few months later presented with weight loss, tachycardia, tremor, sort of like a panic attack (ie thyroid storm- diagnosis Graves). I was on methimazole for 1 year and now in remission. Initially my thyroid antibodies were positive and now all normal (ie negative). My endocrinologist said that I could go into hypothyroidism but haven't seen that yet thank goodness. There unfortunately is a correlation link between graves and breast cancer but nothing like cause and effect.

    Auto immune disease makes our journey even more of a challenge. Hang in there!

  • aborayis
    aborayis Member Posts: 317
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    @snm @baileyboo Wow, two in the group with Graves and one with Hashimotos. Definitely striking. So interesting that there’s been a correlation found, too. Thank you for your reassuring story about your own course. That also makes me feel better about the whole thing.

    @djschmidt First of all, congrats on having the chemo in your rear view mirror. I would say it took about a month to stop feeling “poisoned”. I’ve been tired and weak but I believe that’s all from Graves. I do still have a runny nose that I think is due to the herceptin that I’m still getting. I hope all you still have going on resolves soon!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @aborayis thanks, I guess I will get feeling better just in time for surgery, yay! 😀

  • aborayis
    aborayis Member Posts: 317
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    @djschmidt1 It’s a rough journey, for sure. Believe me though, as terrible as it is, you can do it.

    I remember that acupuncture has been very helpful in addressing lingering neuropathy. I know a few people who swear by it.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @aborayis oh that’s good to know I’m definitely going to try it. My surgeon said my pre op mri looks really good so I’m really hoping for a pcr when I have my surgery in two weeks.

  • bailey.boo
    bailey.boo Member Posts: 131
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    I’ve read about the correlation too. I didn’t give it much stock until recently, but now I really wonder. My only big autoimmune problem with it was horrible recurring chronic hives. An integrative doc did acupuncture on me for adrenal issues once, and it instantly cured my hives instead. For years and years, not one hive, after 2 years of misery. The hives being back were what first tipped me off to something being wrong in this whole breast cancer journey. It happened about 3 months before I found the “thickened” area. My bloodwork was perfect both times.

  • snm
    snm Member Posts: 95
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    @bailey.boo hives? That's so interesting to hear that that's what showed first before the cancer revealed itself! immune system definitely plays a role just don't know how exactly. I wonder how immunotherapy for cancer plays a role in folks with autoimmune condition - does it make it worse in some but not others?

  • fossf56
    fossf56 Member Posts: 17
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    Hi friends, I'm back in the HER2+ camp after my original treatment 10 years ago.

    The MBC is in my left lung and possibly a lymph node. I also have a stage I lung cancer in my right lung.

    I'll be starting TCHP in about 2 weeks, with treatment every 3 weeks x 4. This should treat both cancers.

    For those who have or are going through TCHP any tips?
    Fiona

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @fossf56 a few things I learned and would have done differently:

    1. Try to exercise when you can I’ve found that my lack of movement has not helped me recover.
    2. Do ice your hands and feet as the neuropathy is a real issue. Cold cap too if you can as you will begin to lose hair after the first treatment.
    3. I wanted to stop after 4 so I’m glad you are doing 4.
    4. Hydrate, hydrate, hydrate and go for fluids if you can’t drink enough. Constipation and diarrhea can be super uncomfortable

  • bailey.boo
    bailey.boo Member Posts: 131
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    hi @fossf56 I’m sorry you had to join us. I hope everything goes smoothly with your treatment plan ❤️ I’m happy to hear they can target both at once.

    @snm, that’s definitely a question I need to ask my onc. Maybe there is something more or different they can do.

    @djschmdt, that sounds like great advice, although the thought of exercising exhausts me! I’m only one in, so I need to figure out which days i am doing more harm than good. How do you know?

  • fossf56
    fossf56 Member Posts: 17
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    @djschmidt1

    Thank you. I still remember how bad the constipation was 10 years ago when I first had taxol and herceptin. I'll definitely do everything I can to avoid that.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @bailey.boo I wish I knew the answer. I became a total slug and feel like it’s really made me so weak and out of breath I’d love to see others be able to keep moving. My oncologist tho said most don’t have the energy for exercise. In other news, I Visited the ER last night and oncologist this morning because I’m having swelling in my arm and legs…I’m told it’s Taxotere. This stuff is no joke. I will be taking a diuretic for the time being.

  • bailey.boo
    bailey.boo Member Posts: 131
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  • aborayis
    aborayis Member Posts: 317
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    @fossf56 Sorry for what you are dealing with. Glad we get keep you company on the journey! I agree that hydrating and moving your body when you can are big helpers. I also recommend cold capping for hair preservation and cooling and pressure on your hands and feet to prevent neuropathy.


    @djschmidt1 How is the swelling? I hope it’s getting better.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @aborayis its better with the diuretic. I’m working on adjusting my expectations of recovery from chemo as it seems it may take a while. I was so happy to be finished with chemo but clearly chemo isn’t quite finished with me. Time is the only answer as I understand it.

  • bailey.boo
    bailey.boo Member Posts: 131
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    So glad you’re starting to feel a little better, @djschmidt1 I hope it keeps improving now.

    I’m with you on adjusting expectations. I’m on Day 8 of (worsening!) explosive D, and Good Lord. I need an exorcist up in there. I go in this afternoon for more fluids and some stronger D meds.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @bailey.boo ugh I feel you 100%. I found a drink mix called drip drops for dehydration and it helped a lot (along with fluid infusion). Feel better soon.

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo sorry about the bad D. Hopefully they can give you something to control it. Will they check your mag and pot? Fluids will def. make you feel better!

    @djschmidt1 yay on finishing chemo!!!! Hope the effects will soon diminish. Curious about the neuropathy. Did you ice your feet and hands? At what point did the neuropathy hit? I've completed 2 rounds and have used the gloves and booties, but I hear that is not always 100% effective.

    @fossf56 sorry you had to join us. But you and I will be about on the same timeline for finishing. I will do #3 of 6 TCHP next week.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @grammie2 I did not ice my hands because I was told I would need assistance with that and didn’t have anyone that could come help me change out the ice to make sure my hands and feet stayed cold the entire time. I started noticing nail tenderness at #3 or 4, that has come and gone several times throughout and has lasted longer now after #6. It still comes and goes and I’m hopeful one day it will just go! My oncologist said it can take up to 18 months (lordy).

  • grammie2
    grammie2 Member Posts: 102
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    I sure hope it goes away quickly for you!! I really need to work and can't afford not to be able to type/use fingers. I am really hoping the ice works. Keep us posted on how your next steps go. Hugs!

  • bailey.boo
    bailey.boo Member Posts: 131
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    They actually did check it. I got a call as soon as I got home today that I need to come in again for 4 hours tomorrow for more fluids, potassium, and magnesium. My potassium is super low. Heading to the pharmacy now for the prescription component.
    Today, they gave me fluids and atropine. It seems to have settled my stomach a fair deal. So far, I still can’t eat anything because, while Im super thirsty from it, it left me a little nauseous. But my husband is cooking some chicken, shrimp, and scallops on the grill, and I might try some of that later. I’ll be really sad if I still can’t! I LOVE seafood.
    The scale shows I 10lbs dropped in the last week, so I’ll take that as my mid-week win. I need to get some protein in this body so I can get out there and walk some. Lakeland, FL weather has been gorgeous.

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo I'm so glad they checked it! I hope the nausea and the D settle down so you can eat!!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @bailey.boo oooohhh! I’m in tampa we should meet some day. My doc was concerned when I lost 7 lbs in a week, unfortunately I just got fatter as things went on once I stopped having such bad diarrhea. I’m glad they are helping you out and hope you can eat later. Feel better soon. 🩷

  • bailey.boo
    bailey.boo Member Posts: 131
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    Oh, yes, I’d love to meet up sometime! 😊
    The Altropine isn’t a full solution, but I ate some stuff anyway and am hoping for the best. I feel better. We will see what overnight brings.
    Those potassium pills they prescribed me are HUGE! I read a while back that coconut water is brimming with potassium. Hopefully Harmless Harvest doesn’t taste like metal— it’s going on my shopping list.

  • grammie2
    grammie2 Member Posts: 102
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    Hey! Curious how everyone's platelets did during TCHP. I've had two treatments and with the first it dropped to 107 seven days post treatment day and back up to 179 on the day of 2nd treatment. On the 2nd one, they didn't check it until yesterday (12 days post 2nd) and it was 96. I go next Thursday for the 3rd treatment. Worried that it is this low 12 days later. Anyone else have issues? And maybe this is just normal? I remember the oncologist making a comment that they don't worry unless it drops below 100. Welp barely, but mine is. Thanks for any thoughts or experience!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @bailey.boo my platelets were consistently low but never low enough for stopping treatment. For reference my last bloodwork 10 days ago(two weeks post chemo) my platelets were 98. Fingers crossed they keep you on schedule.

  • bailey.boo
    bailey.boo Member Posts: 131
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    just looked. On the 21st, my platelets were 264, so not too bad.

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo your platelets are awesome!!

  • aborayis
    aborayis Member Posts: 317
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    My platelets stayed within the ok range throughout chemo, with the lowest measured at 118 when I was hopspitalized for a few days with pneumonia.