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ER-, PR-, Her2+ Roll call

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Comments

  • duffyzmom
    duffyzmom Member Posts: 217

    LivM - I'm not sure if it gets easier or if I just got better at managing side effects. For me days 5-9 are the worst. I haven't had issues with nausea since the first 2 rounds but I'm vigilant with the Zofran and Compazine for the first 48 hours following treatment. I actually set an alarm so that I don't miss a dose. I also have been on Prilosec OTC nonstop since round 3. For me the acid was causing nausea in the second week post treatment. I'm going to look for the post I did on my blog about dealing with SEs. If I locate it I'll post it here.

  • duffyzmom
    duffyzmom Member Posts: 217

    Here you go LivM

    Day 17 (-4) -I start the Activia Yogurt ( I do take a daily probiotic as well) I continue the yogurt through Day 5 if I'm tolerating itDay 18 (-3) Prunes ( I do 3 a day until about Day 5 or 6)Day 19 (-2) Begin the Hydration increase ( I try to do 2.5-3 liters of water a day until Day 3)Day 20 (-1) Senokot S 1 tablet daily. I know when to stop. 😉Day 20 (-1) Start the Prilosec OTC Day 21 (0) My steroids begin day before treatment. Day 1 - Treatment day - Snack on ice chips during Taxotere infusion (my mouth sores were minimal after starting this.Also Days 1- 5 Gargle/Swish with 1 TBS baking soda dissolved in 8 ounces of warm water after eating anything. I carry a small bottle of Biotene so I can do this if I eat out during those days as well.Days 1- 3 I start the Zofran/Compazine for nausea at 12 hours post preMeds. I don't miss a dose alternating the two meds and even setting an alarm to wake for them.For me bone pain from the nuelasta is the worst around days 4-6. I've been finding relief with warm soaks in Epsom salt. I take extra strength Tylenol during the day and take Claritan during the week of treatment. On my worst nights I have Tylenol with Codeine. Most rounds I used it on two nights to sleep.Acid is still an issues with the Prilosec on days 5-9 so if it gets bad I supplement with extra strength Pepcid AC or Maalox. As for fatigue - I try to walk at least 4,000 steps even on my bad days and work in a nap.
  • Livlife
    Livlife Member Posts: 36

    Duffyzmom - omg thanks for this. After I woke up at 2am, went to read on this site, slept and just woke up now and my throat hurts, like acid. And my stomach would hurt when i eat anything. You’re right on the acid reflux. I just did what you said to gargle salt and baking soda and it helps a lot. My bone pain from Zarxio just started too, but pain is minimal on my legs. You’ve been so very helpful. Thank you.
  • Hopeday
    Hopeday Member Posts: 5

    hello there every one

    Fortunately I found and i am of this group unfortunately. I have finished 6 rounds of TCHP (and 17 shots of Herceptin left). The pCR look good. Now I have to choose between lumpectomy with mastectomy. I am 30AA size still surgeon suggests it is possible (if no clear margin then MX the same surgery after frozen section test). The original size is 3cm but now it shrank into a flat 1cm residue. The local recurrence and extra possible surgeries did hinder me from lumpectomy though I wish to. I observed quite a high portion of this group choose lump although MX is still the majority. Can you share your thoughts why you do so? Thank you again. I will have surgery 2 days later and still can't make up my mind. (I can revise plan with surgeon)


  • wlo002
    wlo002 Member Posts: 7

    hopeday- I find that it's a very personal decision and one that took me weeks to make. I chose to have a bilateral mastectomy for peace of mind. I felt like I would live in fear of every lump and pain and I didn't want that. I had my surgery last Thursday and can honestly say I went in with no stress or anxiety because I was that sure of my decision. Many women I talked with thought I was crazy for not doing the lumpectomy so I could keep my breast. Go with your gut feeling...you are the one that will live with the decision.

  • Pipandor
    Pipandor Member Posts: 130

    Hopeday, I agree it's a very personal decision. The science says that recurrence is no more likely with with lumpectomy and radiation than with mastectomy. My breasts are part of my identity and an erogenous zone so I went with the lumpectomy. I did not want loss of sensation or the prospect of reconstruction, which can also be an ordeal.

    Fortunately, I had a very experienced surgeon. I was and remain a 38B. He removed about the size of a hockey puck up against my rib cage but my breast looks just a little droopier than the other one, and roughly the same size. I had a very small trace of DCIS on the rear margin but I did not undergo further surgery as the surgeon was confident that radiation would clean up any remaining DCIS in the breast.

    For me radiation was easy but some women chose mastectomy to avoid it. Thee years later, the scar tissue has formed some lumps in the breast, but I am familiar with them, and I count much more on the yearly mammogram than lumps to detect a recurrence. I still have two small numb spots on the side and underneath the breast but the rest is fine. I am glad I didn't have to undergo reconstruction and that's a whole 'nother decision that I hope Iever have to make.

    You say you have small breasts. If you're leaning towards mastectomy, you might want to ask if a nipple sparing mastectomy is an option for you.

    Take care.



  • bellasmomtoo
    bellasmomtoo Member Posts: 93

    Hopeday: This is my response to a similar question on another thread.... My tumor was just behind the nipple. I have very small breasts. If I had a lumpectomy, I would have lost my nipple and most of my breast so I would have been really deformed. A mastectomy gave me a 'better' result. I also wanted to avoid radiation and by having the mastectomy I was able to do so (cause I didn't have lymph node involvement and my tumor wasn't too close to the chest wall.) My tumor was on the left side and I was afraid of future damage to my heart because of radiation. I know radiation is supposed to be safe, but I wanted to avoid it if possible cause a technician who does echo cardiograms warned me about the possibility of heart damage years later due to radiation.

    As someone pointed out on that other thread, the majority get lumpectomies. But because mastectomies have a longer recovery period and may have more complications, you see more posts about mastectomies (and reconstruction).

  • Hopeday
    Hopeday Member Posts: 5

    Thanks again for all of your kind response. Originally I don't think I could choose as my breast size is small and flat, so I don't think too much during neoadjuvant target therapy but after that options are being offered.

    For LX, radiation is not my big concern as I read a lot of research it does help to reduce relapse. I am going to go even even after the MX as suggested by surgeon. Do I have to go through chemotherapy again if I have local recurrence later?

    If I go for MX I will not have the recon at the same time as this is not covered by insurance and also I think I used to be flat. I came from a country that recon is regards as a second surgery and most people can't afford dual targets so I have few reference here.

    It's end up it seems like picking a less scary gambling game. Sometimes I rather I don't have a choice at all.

    Thanks God I could find and read this group. Cheers.

  • shadow2356
    shadow2356 Member Posts: 93

    I don't come on this site too much anymore but I thought I would stop by. I was diagnosed 9 years ago with ER/PR-, Her2+ breast cancer. At the time herceptin was just getting started for the lower stage cancers and there was really no data on how effective it was. They said my type of cancer was a "worst case scenario". I recently read an article that said the Her2+ cancers were having such an amazing response to the herceptin that they are now considering it a better type to have. I am glad to hear that the drug is so effective.

    I am wishing strength to all of you fighting this fight right now. Try to be positive if you can. I spent so much needless time worrying and here it is 9 years later.


    Love. light and hope to all.


    MaryEllen

  • DATNY
    DATNY Member Posts: 53

    Thank you so much for coming back to give us hope. Certainly, this drug did wonder bringing way up the statistics for our type of cancer, which are now on par with the hormone positive ones. Best wishes for the future!

  • jo6359
    jo6359 Member Posts: 1,993

    maryellen- thanks for popping in to share some positive news with us.

  • 06elise
    06elise Member Posts: 62

    MaryEllen, thank you so much for giving us all hope! I'm just over 2-1/2 years, and really starting to feel positive about this entire, hideous experience... mostly by helping others who are just stepping into it.

    Hopeday, you don't mention your age; but it was a factor for me. Since I was postmenopausal, I knew I would never "need" my breasts to nurse a baby. Since both breasts were involved, and I wasn't given a choice on my right side, my two most pressing factors became (1) could I thrive without any sensation in either breast if I choose to have both removed? and (2) could I deal with the anxiety of yearly mammograms if I kept my left breast?

    I know that if I were still fertile, I would have opted to keep my left. But for me at this point in my life, I opted to remove both (with simultaneous reconstruction, since that was covered under Obamacare).

    Once my decision was made, all my anxiety disappeared... which was a feeling I hadn't known for months! Since then, I never had to deal with the difficulties of radiation, nor the crushing anxiety of mammograms. (Hehehe "crushing" hehehe)

    So that's what I wish for you! No matter which way you go, I pray that it helps bring you peace and calmness. ❤️

  • mjb1018
    mjb1018 Member Posts: 151

    Thank you for checking in, MaryEllen! My final Herceptin will be on 12/14, one day before my chemo treatments started last year. Yes, while very aggressive, we are so lucky to have Herceptin and drugs known to be very effective for our type of cancer. As you said, years ago, that was not the case. While it has been a tough year, I can't have asked for a better outcome. I am so grateful!

  • Hopeday
    Hopeday Member Posts: 5

    06Elsie, I finally have done lumpectomy and sentinal last week.

    Pathological report will release a few days later. I am 40. So far I feel so good. It is very personal I know. Just hope it will never come back for any of us. God bless everyone. Enjoy your life. It's just a chapter of our life. And move on.

  • Hopeday
    Hopeday Member Posts: 5

    mjb1018, yes, Herceptin is so miraculous that enable me to done lumpectomy and sentinal successfully. How long your radiation process take? In my country it will be 25- 30 times.

  • mjb1018
    mjb1018 Member Posts: 151

    Hey there, Hopeday! I had AC first (6 infusions), then Taxol + Herceptin (12 infusions), and now at the end of Herceptin only (17 infusions). My radiation was for 6 weeks, everyday Monday through Friday. At the end, I had 4 or 5 (can't remember, ha ha!) "boost" treatments right to the tumor bed. So, similar duration to you. :)

  • Lauraf
    Lauraf Member Posts: 1

    Just diagnosed a month ago already had 2 chemo rounds with Herceptin/ Perjeta and Taxol.

    Thanks for giving me hope!

  • RobynS4
    RobynS4 Member Posts: 18

    I am 63 and diagnosed with IDC and DCIS....Stage 2...Grade3....ER and PER negative and Her2+++. I will be having a mastectomy next week and then the TCHP regimen starting about a month later. Needless to say I am so very scared of this whole situation. Right now what bothers me the most is how I am going to feel with the chemo. I will be going once every 3 weeks 6 times. I realize there is so much the Dr's can do to help alleviate the side effects. My question is, once you have the first infusion are the side effects you get the same ones you get all during your treatments or do more pop up after each infusion? In addition, can anyone describe the level of fatigue and weakness? Any help I can get as to what to prepare for would be greatly appreciated. I know the Dr's tend to lighten it up a bit so I am hoping to hear from others. Many thanks God Bless.

  • mjb1018
    mjb1018 Member Posts: 151

    Hi Robyn, I wish I could speak to your exact regimen, but I had different meds. What I can say about my first round of treatment (6 sessions, every 2 weeks of Adriamycin and Cytoxan), is that my side effects varied. After the first treatment, I was just tired after the first few days. For the day of treatment plus a few days, the pre-med steroid and also taken in pill form a few days, kept me to not being able to sleep well...I worked through my full treatment, taking Fridays off for infusions...by the W or TH of the next week is when I'd be at my weakest...I was very lucky to just "go with the flow" and do what I needed to do. If I felt like working, I did. If I didn't feel well, I'd go home early or just stay home and rest. I had great support all around. I only got so nauseated once to the point of vomiting. My biggest recommendation is TAKE ALL THE MEDS! However they are Rx'd, take them as prescribed. I kind of let the 'as needed' ones get away from me to the point that I quickly learned what I needed and when--not to wait. Side effects did develop and intensify over time. I wish I could say you'll know how you will feel after each one, but that wasn't the case for me. We are all so different! The absolute worst I felt was after my 6 initial treatments were over..by that time, my blood counts had become so low that I required a blood transfusion. So, yes, as the meds build up it is safe to expect different feelings. Try to drink as much water as you can (I hated the taste of it and did better with Gatorade and Vitamin Water) and just eat whatever sounds good to you. I couldn't have planned that if I tried! Normal things were super salty, sweet or spicy to me. It was very strange. I 'm sure you'll get lots of "what to have on hand" suggestions. I would have just wasted most of it. All my love and support to you! I'm nearing the end of 12 months of this...It is a long road, but doable and worth it! I don't get on here lots anymore, but am always available to chat. Hugs.

  • RobynS4
    RobynS4 Member Posts: 18

    It's so nice to be able to talk with others going through this but at the same time I wish no one at all was going through it. Cancer is a nasty monster and I truly feel that we are on the cusp of treatment that will forever end this awful disease. In reading many comments from several forums, the importance of taking the meds around the clock to lessen the side effects is vital and to make sure we drink a ton of water and gatorade, etc. I haven't started chemo yet but will in about a month so I appreciate every bit of advice that has been posted. Best of luck to each and everyone of you. ((((Hugs)))

  • minustwo
    minustwo Member Posts: 13,396

    Robyn - so many great chemo tips here.

    https://community.breastcancer.org/forum/69/topics...

    I also found it useful to be active in the threads that followed my progression - like surgery September 2019, chemo September 2019, etc. If you read the thread from the month or quarter before you start, you will get lots of ideas and great feedback from people in active treatment.

  • minustwo
    minustwo Member Posts: 13,396

    Robyn - if you go to My Profile and fill in your stats, it makes it easier to answer questions.

  • RobynS4
    RobynS4 Member Posts: 18

    Hi MinusTwo...I did fill out the profile info but for some reason it doesn't show up. Not sure what else to do.

  • minustwo
    minustwo Member Posts: 13,396

    Robyn - You have to go to 'settings' and mark what information you want to be either private or public.

  • wlo002
    wlo002 Member Posts: 7

    Hi RobynS4. I just completed TCHP in August. For the most part, I had the same side effects every treatment but they worsened with each one...fatigue, nausea, diarrhea, and taste changes were the worst for me. There are some that build over time, like neuropathy. And then of course, there are symptoms that are related to lab values like nosebleeds from having low platelets. I kept a simple journal with my side effects. My oncologist talked me thru every side effect before my 2nd infusion and provided meds or advice on how to handle them. I highly recommend that! And make notes about things you want to discuss when you see your oncologist next...it's easy to forget when you're face to face.

    Best of luck to you!

  • CameraKim
    CameraKim Member Posts: 33

    Just checking in on my anniversary to offer a little hope. Six years out for me this week - Just signing onto the site brought back lots of memories. It's important to let newly diagnosed people hear good stories though. I sure appreciated it when I was going through the scary diagnosis.

    Wishing you all strength and healing!

  • duffyzmom
    duffyzmom Member Posts: 217

    MaryEllen and Kim - Thanks for checking in it really does mean a lot to hear positive outcomes.


  • bellasmomtoo
    bellasmomtoo Member Posts: 93

    Thanks for checking in and sharing your positive outcomes. This thread gets so little activity.

    This Saturday will be 2 years since my dx. I had my annual with my BS yesterday and so far so good. (Had my annual mammo & US last week and those looked good too.)

  • Pipandor
    Pipandor Member Posts: 130

    Thanks for the positive posts. Kim, your profile is similar to mind so it's really good to hear you are doing fine. Many happy returns to all.

  • stlcardsfan
    stlcardsfan Member Posts: 227

    I am not on this site much anymore, but just wanted to pop in to say, just had my 9 year checkup and all good. Keep fighting ladies!!!

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