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Starting Chemo April 2020

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  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    It was paclitaxel or taxol. I don’t know why it has two names. Now right I am doing ok besides the occasional headache, don’t know it is from the taxol or the Herceptin. I found this adjuvant therapy much harder to deal with than the surgery.

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Hi J.

    About "chemo training"...This what I call it...I forgot what my cancer center calls it...but it was a one-on-one session with my oncology nurse practitioner who explained my regimen in very broad terms, emphasizing some of the critical aspects including how I might feel at various points, possible side effects and how they can be managed, and what to do if i have trouble and concerns. She also answered several of my questions and I was very relieved. I had questions varying from can I floss my teeth to will the insurance pay for certain drugs. Every center likely prepares people in different ways for chemo, depending on the situation and the person. I very much expect the chemo nurses will provide even more info.

    BostonGal

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    BostonGal—thx

    j

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    Welcome, Bon43!

    I also don't have a port, and had my first infusion last Thursday with an IV in my forearm. It was fine- no problems. It's now Day 5 and I just have a mild bruise about the size of a quarter around the spot. My hospital is also limiting procedures, which is why I was encouraged to try the first treatment before getting a port. But I'm pretty sure I want one-- I have 16 infusion sessions total for my regimen, as well as the ease of using the port for blood draw, which I will also do at least 16 times. So, I'm planning to ask my doctor this week about scheduling the port implantation.

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    I had the port put in yesterday late afternoon. Woke up middle of the night as if I had been kicked by a horse! Was awake for a few hours and then went back to sleep. Today early morning have started my first chemo. I’m in the room now getting prepped. Will let you all know, how it goes.

    Zarin


  • Bon43
    Bon43 Member Posts: 14
    edited April 2020
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    thanks Jelloelloello and Zee72

    I am also going to see if I can get a referral somewhere else to get the port. It just seems so much easier.

    Zee72, I see you are ER+,PR-, HER2+. Do you know what % the ER was? I’m curious because mine originally was that same result but my ER was only 3% so my dr is treating as if ER- with no hormone therapy until after the 4.5 mths of chemotherapy. Then herceptin for a year after that as well as surgery.


  • Bon43
    Bon43 Member Posts: 14
    edited April 2020
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    hey Jelloelloello

    You can add Bonnie next to my roll call and I’m from Nova Scotia, Canada.

    THanks for making this group!

    Bonnie

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    Zarin — you’re finished by now; sure hope everything went well.


  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    Welcome Bonnie! We have an amazing group of caring and supportive people.

    You asked about percentages. I think my ER positive percentage was 95 and PR positive percentage was 100. If not, they were right the opposite.

    j

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    So many of us are starting chemo this week! A big step forward in the fight against cancer! WOO HOO!

    • Bon43 (Bonnie) started Monday
    • JustyneF (Justyne) started Monday
    • zee72 (Zarin or Zee) starts today (Tuesday)
    • Hurricaneblair (Erin) starts today (Tuesday), I think!
    • JavaJana (Jana) starts Wednesday
    • wahoomama87 (Kris) starts Wednesday
    • anyone else?


    We are thinking of you and looking forward to hearing your stories, the good and the bad! Remember that we're here for you and won't judge you for any decisions, reactions, complaints or feelings. I hope you're all doing as well as can be!

    love, jess

  • Bon43
    Bon43 Member Posts: 14
    edited April 2020
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    thanks ByHisGraceTwice! I am also thinking of Zarin. Hoping everything went well. I am fortunate to so far not be sick. Still working (from home) and hoping this is how my whole treatment will go. Might be wishful thinking but - fingers crossed and positive attitude! Sun is out here today - makes for a good mood!

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Hey all - I get my port tomorrow morning and that's making me a bit nervous! Trying not to think about it. I start chemo on Friday.


    Emma - I would also be interested in knowing if you reacted to the Herceptin. I have to have that also. And Perjeta. Which also make me nervous. Praying for minimal side effects from that one.

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Kris,

    I wish I could say "don't be nervous about the port" and like magic, you would not be. If it helps, I would say "if I can do it, anyone can!" I found the staff met where my port was inserted to be extremely attentive, pleasant, and reassuring. It was my impression that they have seen many serious medical problems and understand what patients have been going through who have to have ports inserted.

    I've already described in my earlier posts about what I felt and observed after the procedure and I cannot say there was any major discomfort involved. A bit annoying, a little sore, quite itchy (for a while - took Claritin on approval from nurse), a bit unfamiliar - yes. But with time, I assume all things come back into balance.

    I will think of you tomorrow and send good wishes!

    BostonGal

  • AuthorSpot
    AuthorSpot Member Posts: 15
    edited April 2020
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    I did find, with having the port done twice, that an ice pack really helps. So those of you just getting ports, or with new ones, might try that.

    I had a check up today and found out I have a slight kidney infection, so I’m getting antibiotics. I still have a sore throat, and they aren’t sure why, but I think it might be allergies. I also have mouth sores, but started the mouth rinse (water, baking soda, and salt) today.

    Good luck with your port placement tomorrow, Kris!

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    thanks for all the best wishes for the start of my chemo. Can’t keep track of the names! Started my chemo at 7:45am and was discharged at 5 pm. So an awfully long day! Had a numb butt but the end! I had asked for the cooling cap so probably it took about an hour longer than it should. But still super long. So I thought the cooling cap would be on for only a couple of hours. But I had it on for about 4 hours. Because I had to wear it 30 mins before the taxol, during taxol and then carboplatin, and then 40 minutes after. And since I will be getting taxol/carbo weekly, the cap will have to be on 4 hours each time. My gut feeling is that this may not be so good for me for what I’m trying to achieve. Maybe if I was on a different protocol with more spaced out treatments I would consider it. Otherwise, the night went well. No real side effects. Was up for a few hours with some stomach discomfort which soon settled and I dosed off. Went for a walk last evening and this morning and did some gentle yoga and breathing exercises, which really helped. So this week, I started with the intermittent fasting. I think this is really helping. Will know more as time goes on. Since my chemo is every Tuesday, I started 2 days before on Sunday, eating between 1 and 6 pm. Just beef bone broth, thick veggie soup along with a small piece of fish/chicken. Then during the day loads of water. Today is my last day of IF. For the next 3 days will eat regular meals with loads of protein. And then start the cycle again on Sunday. Let’s see how this goes with time.

    The port is still a bit sore and bruised around the area since I had it put less than 48 hours ago! But feeling much better as the days go by. Luckily I’m off today, will be in work tomorrow.

    Can’t keep track of names, start times etc. But good luck to all those putting the port in and starting chemo later this week

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    bon43, forgot to answer your question. My ER was on a scale of 8. It was 8/8. So 100%. As of now the main goal for me is to get the treatment for her2 and shrink the margins, hence my current regime, the ER treatment of tamoxifen will be started after my surgery.

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Wow! A lot can happen on here when you don't check it for a couple of days. We are getting into the thick of it now, aren't we? I had my port placed yesterday. I feel like all went well with the procedure...I did feel a little more wiped out yesterday than I anticipated....probably because I took some Vicodin....it didn't seem to help with the discomfort and gave me a headache....anyone else?? I will just use Tylenol today. The worst part was the bandage/taping....it made me hold my head in a weird way and unable to turn my neck....which could have also contributed to my headache. 🤪.

    No chemo start for me this week,,,,will find out on Friday, so I am guessing next week. Praying for those of you who have already started, starting this week, and starting soon....so basically everyone!,💗

    Thank you to those who have shared about your treatments. Emma, So sorry to hear about your bad reaction and grateful you are starting to feel better. Zarin...I am interested to hear how your Intermittent fasting goes and if you feel like it makes chemo days more tolerable for you. Kris...praying for your port placement to go smoothly today.

    Love that we have gotten a few more ladies in here! Welcome!

    Question: For those of you continuing to work or live with someone who is still going to work during this Covid-19 time, what kind of pre-cautions/extra-precautions are you taking so you don't get sick? My hubby is concerned about getting me sick...by bringing something home....he doesn't work at a place where he would be around a lot of people, but he is still concerned.....even with running errands.

    Have a Happy Wednesday! Erin


  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Good morning from BostonGal in Massachusetts,

    I am just now catching up with the new posts from Erin, Zee, Stacey- you and everyone here is SO remarkable...my heart is full.

    I echo all you are saying even tho' I have not started chemo yet.

    My continuing Best Wishes,

    BostonGal


  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    All the best to everyone having chemo this week. I was feeling rough the past two days after my infusion on Friday but seem to be a bit better today. Mostly achy and lethargic. Stay safe :)

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Sherri, my best wishes to you and I hope the symptoms continue to lighten quickly!

    BostonGal

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Hey all - port placement went pretty well. The main soreness I'm having a sore/pulling feeling when I chew or swallow. I'm guessing the muscles in my neck pulling? I would be curious if others have felt that.


    Zee72 - I decided not to do the cold cap at all. I doesn't bother me to lose my hair, and the thought of having that on my head for so many hours was a "no go" from the beginning. I am, however, going to try and cold gloves and socks for my nails and to try and prevent or limit neuropathy.

    Kris


  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    kris — glad the port went well.

    Yes, had more tenderness with jaw movement than expected. That little incision at the base of my neck where they thread through the rubber tubing ... I think the surgeon had to tug on neck muscles. I’m two weeks today and all still is a little tender

    j


  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    J - yes! That's the feeling exactly. Glad to know I'm not crazy with that. It's so weird. Only when I swallow or chew.

  • hnsquared
    hnsquared Member Posts: 47
    edited April 2020
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    Hello Ladies,

    My name is Heather and I live in the mountains in Colorado. I'm 49 and in February I found a lump..or really my left breast just felt different and I noticed it in the shower. My mammogram was due in April but I didn't want to wait. So one diagnostic mammmo, ultrasound and biopsy later..on February 20 I found out I have breast cancer.

    I'm so happy to find a place where people understand what that feels like. then the next several weeks of appointments, testing, scans, bloodwork....I was on the verge of tears daily which isn't like me. It's so hard... everyone tells you how you are bad ass and you will kick cancers ass but I just wanted to cry. I didn't feel very bad ass.

    So I met with a breast surgeon and talked about options and that I was a good candidate for a lumpectomy. Then during the ultrasound exam she said “hmmmm" and spotted a lymph node that looked suspicious. She did a biopsy and a few days later found out it had cancer cells. We did genetic testing and I'm brca negative but have the PALB2 gene mutation which raises my risk for breast cancer significantly, and a slight risk for ovarian cancer and pancreatic cancer. So big game changer.

    So after meeting with everyone from a genetics counselor, physical therapist, oncologist, radiological oncologist, etc. we have a plan. I got a port 3/30/20 and did my first chemo 4/1. Had my second today. I am doing AC T but due to the virus we are doing the 12 weeks of taxol first since it shouldn't knock my immune system down as much. Then 4 AC every two weeks. After that surgery. Then radiation but I want to chat more about the benefits of that when the time comes.

    After my first chemo I felt a weight had been lifted. Now we have a plan and it's started. The waiting and not knowing was bad. No side effects for the first treatment and we will see how it goes this week. I've been icing to hopefully ward off neuropathy and nail issues. We shall see. I'm continuing to work full time and hoping I can do this through treatment with just treatment day off and a few days here and there.

    Sorry this was soooo long 😃. I'm glad to be here with others going through the same thing who understand. Hope all of you ladies that have started treatment are doing well.


  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Heather....I am so glad you found your people! You are so very welcome here! Thank you for sharing your journey with us...the roller coaster of emotions with all the different things going on. So glad you have a plan and you have started the plan.

    I totally get you on not feeling quite as brave and courageous as people are making US out to be; HOWEVER, when you think about all WE have all been through ever since our suspicions were first aroused by feeling something, seeing something, during a scan or routine visit..just making that first call to make that appointment was sooooo hard....admitting that there could be something wrong and be willing to find out...there is a gentle bravery in that and it is something only WE can do for ourselves. For whatever reason, WE have all been indoctrinated into this club that WE didn’t want to be a part of, but WE are showing up for OURSELVES, for each blood draw, each scan, each time we have to allow someone to see us in a very vulnerable state, WE ARE BEING BRAVE & COURAGEOUS!!! Sure we feel scared, we will be worried, we will not always feel that we are at our best, BUT WE WILL STILL KEEP SHOWING UP FOR OURSELVES, FOR OUR FAMILIES, FOR OUR FRIENDS.....BUT MOSTLY FOR OURSELVES BECAUSE WE ARE WORTHY, WE ARE VALUABLE, WE ARE ENOUGH!!!!!


    Getting off of my cancer butt kicking sermon....please pray for me just found out earlier today that I will be starting my first round of TCHP in my brand new port,,,that yes, Kris, feels weird in my neck...better today than yesterday. (Yes, tomorrow, I will come back and re-read what I wrote to help encourage myself during treatment.)

    Eri

  • hnsquared
    hnsquared Member Posts: 47
    edited April 2020
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    Thank you Erin!!! That is exactly what I needed and I'll probably re read that a million times during the journey. My goal is to show up everyday and get on the other side of this.

    So the first couple of days after getting my port it was weird...I could feel it and it felt weird to move my arms and neck certain ways. That has gotten better everyday and I can now move and sleep without noticing it. It is still tender if I touch because of the incisions. I'm sure that will be better in a couple of days. Use the lidocaine cream over the port. Smear it on with a q tip ( or your fingers will be numb) and cover with plastic wrap. Helps especially when it's still tender.

    i promise you will feel better after that first chemo is over.

    Heather

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Heather...your words encouraged me as well!, Erin

    PS...those with ports, what kind ofshirt did you wear on chemo day, so they could access your port?

  • moderators
    moderators Posts: 7,918
    edited April 2020
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    Welcome, hnsquared. We're so sorry you find yourself here, but we're glad you've joined our community and hope you find this to be a supportive and welcoming place! The start of treatment can definitely give you a sense of control - we're glad things are going well so far! We're all here for you on this journey!

    The Mods

  • JustyneF
    JustyneF Member Posts: 7
    edited April 2020
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    Hey Everyone!

    A bit delayed as I had my first chemo appointment on Monday in the afternoon. In total I was there for about five hours so not awful but definitely a long day. I had taxol and my I-Spy2 arm drug, plus the additions of an antidiarrhea pill, benadryl and steroids. The next day I went on two walks of around 3 miles each and it absolutely tired me out so the next day just sat outside on my porch to get some vitamin D and went for a walk of just less than a mile. Trying to stay somewhat active to keep myself moving especially while I still can.

    My main side effects were just waking up with HEAVY legs, almost felt like I couldn't lift them when I started walking and then just drained. My appetite comes and goes...one second I am craving something but if I don't eat it right then it's completely gone. The water might be the craziest thing to me - just not a great taste and definitely tasting that metallic flavor everyone warns about.

    In case this might work for others here is what has been keeping me going and I truly enjoy: yellow Gatorade, mandarin oranges, bagel with peanut butter. I got lemon Luna bars yesterday and had one for lunch and it tasted good, but hard to chew.

    Hope everyone is doing well! Thoughts with you all!

  • Molly5678
    Molly5678 Member Posts: 4
    edited April 2020
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    Hi! I just joined today. I was diagnosed last month but got my final results yesterday and am feeling overwhelmed. For starters, I am 70 and have been lucky to have been pretty healthy most of my life. I discovered a breast lump recently and started the usual procedures. I got mammograms, was biopsied, had a PET scan and a brain MRI. They found that the breast cancer is in numerous lymph nodes, pelvic bones, my spine, and in other bones. They think I might have some small spots in my lungs. I'm a triple positive.

    I'm devastated. I thought I might end up with a regular mastectomy and find that it's everywhere. They're planning my chemo and I am supposed to start next week. It's probably going to be Taxol plus Herceptin and Perjeta. After that, I'm scheduled to get targeted radiation and, later on, hormone blockers.

    Everyone has been very nice and my grown kids are supportive. It's just that I've always been the strong one in the family. After my husband died, I was the one everyone relied on. I'm not really a crier but I can't seem to get myself pulled together. And I'm so angry with myself for being such a baby. I'm so lucky that I've managed to make it this far. There are so many people who have to face this while they still have full time jobs and young children.

    I think part of it is that the isolation due to the virus has begun to get to me. If I was able to be out and involved with my grandchildren, I'd be less likely to focus on myself. I never thought I'd say this but I'd give anything to just be walking through the grocery store like normal. And the kinds of support groups that my oncologist has are not in place now. I'm just grateful to find this group. It has meant a lot to me today to be reading here.