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  • Cinque
    Cinque Member Posts: 240
    edited February 2016

    Im 5 rads down 25 to go too.  I thought the funny taste I had in my mouth yesterday was possibly side effect however I think its more to do with cold virus I have picked up.  I wonder how long before our immune system recovers from chemo.  My hair has really started to grow will take a while but encouraging to see.  Weight I picked up is slowly coming off I  have been eating well and exercising.  My lymph arm has been sore which is a bit of a downer.  To all those who have commenced rads keep doing lymph arm exercises.   Having more better days than bad which is good I  hope the same applies to everyone on forum.

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  • fidget
    fidget Member Posts: 135
    edited February 2016

    Hey everyone. Just wanted to let you all know that surgery went fine Friday. Thank you for the well wishes. The needle guided wire procedure was not worth the anxiety. I was so worried about it. I got to the hospital at 7am and went home about 4 pm mostly because the pain was pretty bad at first. The incision is longer than I thought, and not exactly where I thought it would be. My BS took 3 nodes and that's mostly my source of pain. Took off the dressing this morning and that first shower felt great. I have an appointment with him tomorrow to get pathology results. Hope the rest of you are doing well.

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  • tessu
    tessu Member Posts: 1,564
    edited February 2016

    Has anyone gotten tinnitus as an SE? I've had tinnitus to some degree all my life, but it got much worse (louder) during chemo and has only eased a little. I never remembered to mention it to a doc because I always had so many other SE issues, I forgot :(

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited February 2016

    Fidget - I hope your nodes are all clear :) Happy to hear ti went well with the exception of the pain at first.

    I get a bad taste from the mouth piece they use in rads so we bought some licorice gum and today I'll see how well that works.

    Happy Monday


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  • inSF
    inSF Member Posts: 53
    edited February 2016

    Tessu - my tinnitus has gotten worse with chemo, but my MO didn't seem to think much of it. My vision has also gotten worse. I'm hoping both will go back to "normal" (which is to say only as bad as they were before) after chemo. I do a lot of research and haven't come across any useful information on either as an SE.

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  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited February 2016

    I emailed my onco nurse, and after back and forth with details, she told me we're skipping tomorrow's Taxol (#11) and we'll see how I'm doing at my appointment next Tuesday. It was supposed to be my final chemo.

    I know the world isn't ending, she assures me that it's perfectly all right to skip for tomorrow, but I'm freaking out a little. I understand the need to balance benefit with long-term nerve damage, but I am worried about skipping. I want to do all the treatments, even if that means we have to do a reduced dose. I'm a little surprised that she's having me skip tomorrow vs. reduced dose, which seems to be what most of you have done instead. Just hopefully this doesn't screw up the plans for my surgery, etc.

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  • tkemp67
    tkemp67 Member Posts: 75
    edited February 2016

    El Tigre- No weekends, 5 days a week for 6 weeks. Radiologist didn't mention Breathe hold machine, or bolus. Are these new or better?

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  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited February 2016

    Now I just got an email saying I might not have another treatment. "She may stop you at 11, which is very darn good"... except I've only had 10.

    I have to trust that they know what they're doing and not get frightened by this....

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  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316
    edited February 2016

    Amy - Thanks for the update - I've been thinking about you a lot. I also want to do all the treatments, but am unsure whether I'll go ahead with tomorrow's #12 infusion. A third alternative may be a further reduction in dosage.

    The neuropathy and muscle pain have gotten bad this past week and I worry it could be permanent. I keep hearing even when it does go away, it takes months. I'm glad, with your SEs, you're waiting a week and hope you get some relief.

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  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited February 2016

    I wish we could see a crystal ball about where that "permanent" line is. If I have to live with this awhile, I'll do that in order to do the full treatment. If it's going to be permanent, I do understand the need to weigh the costs and benefits. GRRRR. I'm just surprised she never even mentioned the option of reducing treatment and hoping that might be an option if she'd otherwise stop altogether.

    I'm just going to be resting this week. No more walking, which seems to make it worse. MUST. GET. BETTER.

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  • fidget
    fidget Member Posts: 135
    edited February 2016

    Great news everyone! Even though I have an appointment with my BS tomorrow, he called me today with the results from Friday's surgery. Pathological Complete Response!! Yay! He used those exact words. He said we hit a home run, no trace of cancer in the breast or nodes. He is really impressed with Perjeta. Whew. I just have to thank everyone here for your support. It has meant the world to me. Now just have to heal and get to radiation.

    For those with neuropathy, I have it too in my finger tips and toes. I'm 3 weeks PFC (except for Herceptin). Three of the nurses I had Friday have dealt with breast cancer themselves, and two said their neuropathy lasted several months. You girls are right though, one glove does not fit all. I hope mine goes away quickly because it's so bad some days I just become fumble fingers and drop everything. I also worry when cooking that I'll burn my fingers and not even notice. I'm so ready for the twitching, watery eyes to go away also.

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited February 2016

    tkemp

    I found out later after going a few times about the "bolus", before starting I had no clue what it was. It's a tool to bring the radiation to the surface of the skin. "bolus (a flat piece of rubber-like material) on top of your skin, which increases the radiation dose to your skin and to the tissues right below it."


    As for the breath hold machine, I'm on that machine to avoid radiation to my heart. CT scans were done to see if this machine would benefit me in any way and it turned out it does, it would limit the radiation to my lungs and miss my heart. Not all facilities have this machine, i got lucky.

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  • fidget
    fidget Member Posts: 135
    edited February 2016

    Good luck tomorrow Southern! I hope too that you hear those same exact words. My surgeon is so over the moon happy with Perjeta. He was so excited when he called me. I absolutely love him. He is a general surgeon, but his passion is breast cancer. It's kinda odd when I think about it. I have actually gotten more information about cancer from him through this whole mess than I have my MO.

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited February 2016

    great news fidget. Southern good luck tomorrow.

    Amy and mLisa oh boy you are both in my prayers. Amy I think you will b ok with just 10 taxols. My mo told me weekly taxol ends up being more than dose dense. Each dose dense is 2 1/2 the amount of weekly. I remember reading that the weekly #10-12 taxols are extra insurance chemo. I empathize that you both want to finish the complete amount but I'm really worried after reading your posts about neuropathy. Be well ladies.

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  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316
    edited February 2016

    Shopgal - Thank you so much for that information - it fits perfectly with my MO's being okay with quitting after 10 weekly treatments. (Although she sure wanted me to get #10!) Unless I have a miraculous disappearance of neuropathy overnight, I think I'll be calling it quits with 11 in the books.

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  • Cinque
    Cinque Member Posts: 240
    edited February 2016

    I definitely got tinnitus from treatment.  I rang the onc nurse who confirmed it was the chemo.  She said it would go when treatment stopped but it hasn't.  It has settled down it seems worse when I am tired.  

    CarolinaAmy so sorry you cant get you last dose tomorrow its just nice to finish.  Please dont think it will have negative impact on treatment because it wont.  I think its great your team is adjusting your schedule for you.  One of my mothers friends many years ago had to cease treatment altogether because side effects too much I spoke to her day before yesterday she's in her eighties.  Take advantage of this extra time to recover before your next round, try to calm you mind and not use too much energy worrying, easier said than done but really important. Xxx

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited February 2016

    great news Fidget!

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  • mom2boo_and_buzz
    mom2boo_and_buzz Member Posts: 149
    edited February 2016

    Hi Everyone! I have stayed away from the boards since the holidays. My last chemo was 1/4 and I was so incredibly tired. I had my first herceptin only on 1/25 and I was again really tired from that. I've been getting ready for my surgery this Wed 2/3 and I'm very nervous. I decided on a BMX. I'm getting immediate recon so that avoids any other surgeries if there are no complications. My 15yo DD is still having a really rough time with it all. I'm hoping that just having one surgery will be easier on her too. Then 6 weeks of radiation and herceptin until September and I should be done. CT scan from 2 weeks ago showed no sign of tumor and lynph nodes were normal size, hoping for PCR.

    I'll be reading over the next few weeks to catch up, I just needed a break for a little while. I hope everyone is doing well!

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  • luzeelu
    luzeelu Member Posts: 101
    edited February 2016

    Three weeks PFC and I'm still wishing I had stopped after Taxol #11. I swear it was #12 that pushed me into a bit of neuropathy that still hasn't diminished. I have to avoid shirts with small buttons but can manage larger ones. Zippers are better! And I'm certainly grateful that it's not so bad that I'm falling down. Nothing as drastic as what some of you have mentioned! The MO said it will gradually go away so I hope she's right. Some days it seems a bit worse, but other days not so much.

    Still waiting for more nails to fall off but I'm also being very careful with them so they're hanging in there. Eyes still runny. My hearing is diminished but then I usually have a couple of hats on since my bald head is always cold.

    I'm trying to be patient!

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  • Shelly52
    Shelly52 Member Posts: 153
    edited February 2016

    Yay Fidget!!!!!!!  🍾

    Southern-good luck to you. 🍀

    MnLisa and Carolina - wishing you peace with whatever you decide. You both have completed so much already. 🙌🏽  

    Mom2boo - prayers for a successful surgery and quick recovery. 😇

    Cajun - hope you are feeling better. 

    Exercise -- hope your healing continues well. You are probably already hiking mountains !  

    I was blessed with hyper pigmentation following end of taxol. It is on my stomach only, thankfully. It looks like brown patchy skin. I have read that it is a chemo side effect that should go away in 13 weeks or so. Sheesh!  Anything else coming??? Anyone else get this?


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  • AnnieB43
    AnnieB43 Member Posts: 724
    edited February 2016

    hey y'all. Just checking in. I hope everyone is well. I've got 14 rad zaps left.

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  • LindyC
    LindyC Member Posts: 231
    edited February 2016

    Annie...and I've got 10 left..but who's counting

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  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316
    edited February 2016

    My physician's assistant couldn't have been more supportive today when I decided to stop after 11 weekly Taxol treatments. Excited to be 1 week PFC today!

    Hoping everyone's treatments are successful this week and that SEs are minimal.

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  • Scotland219312
    Scotland219312 Member Posts: 237
    edited February 2016

    Congratulations, Minnesota! And good luck, mom2boo!

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited February 2016

    Congrats Minnesota!!!

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited February 2016

    Melodie and fidget, big congrats!!!! That is such awesome news. :)

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited February 2016

    congrats Southern!!!!!!!!!!!!!!!

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  • fidget
    fidget Member Posts: 135
    edited February 2016

    Congrats Southern! My BS gave me a copy of the pathology report today so I could see it in writing! LOL! He is too funny.

    Congrats to you also Minnesota! I love reaching these acronym milestones. PFC, PCR, haha. Six months ago I had no idea what it all meant.

    Good luck to you Mom2Boo! I just know Perjeta and Herceptin will do for you what it has done for Southern and me and so many others!

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  • octogirl
    octogirl Member Posts: 2,804
    edited February 2016

    Woohoo!!! Happy Dance Southern and Fidget!!!! YAYYYY!!!!! So happy to hear great news!

    Octogirl

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  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316
    edited February 2016

    Southern and Fidget - WOO HOO! Wonderful, wonderful news

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