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Starting Chemo April 2020

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  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    Wahoomam87 - when the little wispy pieces begin to fall out, another tip is to use a lint rolller. It was a tip I learned on this site when I lost my hair before it really helped.

  • Dolly2019
    Dolly2019 Member Posts: 19
    edited April 2020
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    Hi Bostongal,

    Thanks for saying hi. I feel a little bit of an intruder here because I’m nit doing chemo. BUT, I have done it before and I just want to say that you ALL you ladies will get through this. The treatment will go quickly and you’ll all eventually be able to put this behind you. Not saying completely BUT you do eventually get to a point where you no longer worry about cancer. Honest.

    Dolly

  • CCGirl
    CCGirl Member Posts: 86
    edited April 2020
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    Thanks for responding, BostonGal and Sugar77. Although it isn't a club any of us would want to join, it's comforting to know I'm not alone.

    Thanks to everyone who posted tips for dealing with hair falling out. The lint brush idea is great. And the visual I'm getting thinking about that is hilarious.

    My husband had a funny idea for making masks to wear to chemo therapy. He suggested I construct them out of my old bras because he figures I don't need them any longer. I might try it since they're stretchy and have been washed so much, they would probably be soft and comfortable. Just thought I'd share since it made me smile.

    Still don't know when the chemo will start but have been told it has to be before the end of the month since my surgery was on March 25th.

  • CCGirl
    CCGirl Member Posts: 86
    edited April 2020
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    Hi Jelloelloello,

    Could you add me to the roll call?

    CCGirl (Nan) [Cape Cod, MA] - late April

  • LiseC
    LiseC Member Posts: 24
    edited April 2020
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    Hello all! I'm Lise. I'm 43 years old, have been married for 13 years and have a 4 year old son. I was diagnosed with IDC hormone positive her 2 negative stage 3 cancer in my left breast a few weeks ago. I will be doing 12 weekly taxol infusions then 4 AC every other week. After that I am having a mastectomy (waiting on genetic testing to see if I need a bilateral) then radiation. I had my first taxol yesterday and am still felling pretty good today. Had a bit of a reaction to the taxol so they had to stop the infusion, give me some benadryl, wait about 20 minutes there started back up at half speed. After that I tolerated the infusion well. I was able to take my son on a walk and work on some laundry today.

    I'm lucky to work for the College of Medicine at a large university on Florida so I don't have to travel for treatment or doctors appointments, granted most have been through telemedicine when possible. I am also able to work from home due to COVID and even after the university "opens" back up again, I will be able to continue to work from home.

    Good luck to you all!!


    P.S. can you add me to the roll call - LiseC (Lise) Florida, USA 4/10

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    For everyone who was talking about when and how to cut hair, here is a link to an article that I found helpful. I have shoulder length hair and I am thinking of having my 19 year old cut it into a bob next week. And then, when it starts coming out, my hubby has clippers to help.

    https://hatsscarvesandmore.com/blogs/news/chemotherapy-hair-loss-to-shave-or-not-to-shave


    this is me on Thursday before Chemo Day 1....Erin

    image

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Hello to Lise, Molly, Dolly, and Nan...and any others who have recently joined us! Thank you for sharing your journeys with us. We all have a lot to learn from one another.

    Kris...glad my soul sister is continuing to do well...I would say today has been uneventful...which is great! Been trying to go out on some sort of walk every day. Others who are further on this journey said activity of some kind just about every day is so beneficial on this journey.

    Erin

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Pretty picture Erin!

    Thank you so much for the link and exercise recommendation.

    BostonGal

  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Just stopping by to say hi to all the ladies just joined this group. Welcome!

    Erin- thank you for the link. Now I know exactly how to deal with the hair loss situation.

    I remember someone asked about if I have any reaction to Herceptin. So my first herceptin infusion was on March 24th, the day after that I had palpitations, heart rate went up to 130 bpm, so I spent 6 hours in ER, getting fluids and potassium through the IV. My palpitation went way and have normal heart rate. Now I have mild numbness on my hand. I only had taxol for 15 minutes before they stopped it. My oncologist is going to give me a lower dose of Abraxane and see how I will do next week. Hopefully I am not going to be passed out again.(fingers crossed)

  • Bon43
    Bon43 Member Posts: 14
    edited April 2020
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    Hey Erin

    Love the pic! Thanks for the link - did you order anything from the site? They have cute hats and scarves.

    Thanks

    B

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    hi All,

    Finding it difficult to track...but who all are on the track for weekly chemo of Taxol and Carboplatin and every third week of herceptin and perjeta along with chemo.

    Wondering when the hair loss will start. Where I live it is difficult to receive any online orders. Also really don’t have any scarves on hand. Will probably have to go for the shaved look.

    Hope everyone is having a happy Easter!

    Zarin

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Fond greetings to all,

    It is a beautiful spring day here in Massachusetts. I hope that in this season when we celebrate new life - I noted my yard is becoming very green and all the birds are singing - we can feel the warmth of the hope, peace, joy, and love that surrounds us.

    BostonGal ...

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Bonnie..I just ordered a few things from them yesterday, so I will let you know what I think....Erin

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Erin- thanks for that hair loss article. Very helpful! I already cut mine pretty short before I started chemo, so I'll just have to shave it down with the #2 comb on our clippers. My husband has offered to do the deed when it's time. How are you feeling today? I'm definitely feeling the fatigue setting in. Those that are ahead of me (post-chem Day 3), how long did that go on? I'm a very energetic person normally and this is such a weird feeling. Hope everyone had a lovely Easter!


    Kris


  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    Kris - I'm a few days ahead of you so I can tell you my recent experience. I had my first chemo on Friday, April 3. Like you, I started to feel tired around day 3 (Monday in my case). I felt achy and tired for about three days throughout the week and felt almost normal by Good Friday. At that point, I needed to take Immodium once over two days but otherwise felt really good. Hope this helps.

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Sherri -


    Thanks - that helps! That's what I've read also, but I was curious if that was the actual experience. It's kicking my butt today, for sure. I feel like I'm in a total fog.

    Kris

  • LiseC
    LiseC Member Posts: 24
    edited April 2020
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    Kris - I’m day 4 today and feel out of it. I’m trying to work from home but having a hard time focusing. I’ve cleaned up the kitchen but can’t motivate myself to walk. I think I need a lazy day today. Hope you feel better soon!

    Lise

  • hnsquared
    hnsquared Member Posts: 47
    edited April 2020
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    Erin...thank you for the article on hair loss. I’ve been told it will go but not been given much help with how to manage. I think that will be the hardest part....just a daily reminder that I have cancer. I was scheduled to get my gray roots covered one more time and planned to have my hair cut shorter before my first chemo but then the salons closed. It’s below my shoulders and my husband has volunteered to cut it in a bob but I can’t imagine what that would look like. I bought a wig online but it’s hard to tell how it will look because I still have so much hair it fits weird. I hate hats so I imagine this will all be a challenge for me.

    I’m on a different program than a lot of you. AC T but I’m doing 12 weeks of taxol first. I’ve completed 2 weeks and still feel good. I get treatment on Wednesday and was dragging a little Saturday. I’ve been working everyday but treatment day. I’ve also been walking and doing some strength training. I’m lifting a little lighter but trying to keep my lean muscle.

    Stacey....once this is over we should definitely meet in St. Louis to celebrate😃

    Heather

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    I guess I am still feeling mostly okay,..definitely better than I envisioned. Today is Day 4 after 1st chemo and I would agree with what others are mentioning. I am more tired today and at times feel like I am in a fog and difficult to focus. I guess, I am in good company! On Wednesday, I will be going to a “cancer care closet” at a nearby hospital that has a much larger wig and head covering selection. Heather, you are right, this hair loss thing will be hard because it is a daily reminder of what we are going through. I try to tell myself that this is just for a season.

    Heather & Stacey....i am in the St Louis Metro area, so count me in for the celebration!

    Erin

  • CCGirl
    CCGirl Member Posts: 86
    edited April 2020
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    Hi everyone,

    Just got a call from oncologist. Evidently, his colleague at Dana Farber would like to see an Onkatype (not sure how to spell this) test on mastectomy tissues before deciding on chemo regime. Will take another 2 weeks. My oncologist says they would prefer to wait until beginning of May to start chemo anyway because of covid peak. Asked him to send me a copy of the pathology report from the mastectomy since I haven't had a chance to see it. I think my case is a bit cloudy. Not sure if this is good or bad, but whatever it is, it’s deferred.

    Thinking of you all and sending good thoughts and hopes that you’re all hanging in there.

    Nan

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    Hi All,

    Earlier this afternoon got done with the second weekly chemo session. Hoping to see a trend in how I feel so that I can organize my week better. I need to go into the hospital for work once a week for tele consults. I’m keeping this day as Monday, the day before my chemo. This along with the intermittent fasting, regular walks and yoga is keeping me active and in good spirits.

    Good luck with everyone getting chemo this week.

    Zarin

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Hey all -


    Just checking in. Still feel pretty foggy today, although slightly better than yesterday? It's hard to focus! Trying to work and just being deliberate about what I'm doing. Anyone experiencing any acid reflux? I'm having some intermittent symptoms and trying to figure out how to control that without taking any more medications. Got out and walked yesterday and going to do the same today. Hope you are all hanging in there.

    Kris

  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    Kris - when I did chemo the first time, I remember my oncologist prescribing Zantac for acid reflux. It really helped. This time, I needed Imodium more and didn't want to mix medicines.

  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    Sherri -

    Thanks. I hate taking any kind of meds - I'm such a natural solutions person (this whole chemo thing is killing me!) I'm keeping track of the symptoms and when they are occurring to see if there is a pattern. Definitely, I think when my stomach gets empty, it's worse. I'm noticing it most in the morning and right before dinner, if I haven't eaten since lunch. I'm playing around with it. Obviously, if it gets unbearable, I'll take what I need, but I'm hoping I can figure it out.

    Kris


  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Zarin, that is so inspiring.

    My best wishes

    BostonGala

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Hello Friends....here are a couple of links to blogs that I just discovered and thought some of you might find interesting

    1. https://www.eyelineher.org/ young lady with alopecia...several videos about drawing on eyebrows, applying false eyelashes, and tying/wrapping scarves.

    2. https://www.mycancerchic.com/style-beauty/hair/hair-timeline/ young lady who battled breast cancer...is about 3 years out from treatment

    3. https://www.suburbanturban.com/ shop with head coverings and tutorials...a bit pricey...located in UK

    I am sure somewhere else in this community this info was already posted...oh well, here it is again.

    Erin

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    I can't believe I haven't posted in a week, and since then, we've had so many new members: Welcome to Authorspot (Stacey), hnsquared (Heather), Molly5678 (Molly), LiseC (Lise), and CCgirl (Nan), as well as Dolly2019 (Dolly) who is joining us on behalf of her mother. I've added you all to the Roll Call at the top to help us keep track of each other. :) If I missed anyone, please let me know!

    I had my 2nd chemo session last Thursday (4/9). I think I'm on the same regimen as Justyne, Heather and Lise: I'm starting with 12 weekly doses of Taxol (which I found out is 4 "cycles," each cycle broken into 3 doses), followed by 4 cycles of AC (Adriamycin and cyclophosphamide) given every two weeks. My pre-meds are Benadryl and a steroid that I think people call Dexa. I'm also part of a clinical trial so I am receiving an immunotherapy called Cemiplimab (my nurse calls it "cemi").

    For my first round, I didn't have bad side effects at all. Mild fatigue and body aches, no nausea. Now in my second round, I again feel the fatigue and aches around Day 4 and Day 5. I also know that I feel great on Day 2 (the day after, lots of energy because of the steroids), Day 6 and Day 7. (Counting a 7 day cycle, starting with chemo day as Day 1.) They do say that Taxol is "chemo-light" so maybe it isn't expected to give strong side effects anyway. Maybe it's because I've been pushing fluids so well! Whatever the reason, I'm super thankful and relieved so far. Maybe things will get worse later, but at least for now, I'm celebrating the good days!

    I'm super impressed with how most of you are still working—Zarin, Kris, Heather… probably more that I missed! My mind has been really, really having a hard time focusing and I have, like, no attention span-- for the whole month of March and since. Maybe it was the emotions of the cancer diagnosis, maybe the anxiety of the looming health crisis, but I was totally overwhelmed mentally. I mean, I felt like I was acting ok and looking ok, but I think my mind was working so hard to hold it together on the outside that it really was just too much for me on the inside. I couldn't focus at work and the stress of wrapping up projects and training people to take over while I went on leave was tough. I am currently off work for the month of April and I'm already nervous about going back (not really going anywhere- working from home, of course), though I don't really have a choice because money/life/etc.

    Anyway, there have been so many great conversations in this group! I will try to post again soon to answer some other things, but I wanted to finally jump back in now to say hi and that I'm really thankful for all of you.

  • AuthorSpot
    AuthorSpot Member Posts: 15
    edited April 2020
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    Kris— I would say my worst days for fatigue were Day three after AC until day 8. I have had some acid reflux as well and since I already take Prilosec (I had esophagitis last year), I have been taking Tums. It's a good way to get extra calcium. Also, your picture was beautiful!

    Erin—yay for joining us in St. Louis! The more the merrier. 😊

    I'm here for my second AC treatment today. After they push the Adriamycin, my chest gets really heavy and breathing is an effort. It lasts a couple of days. But it could be because I have the nodules in my lung. 🤷🏻♀️ The nurse said not to worry unless it got a lot worse. Unfortunately, I've had allergic reactions enough to know what she means.


    Here's a pic of me getting my infusion today.

    image

    Love to all 💕💕

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    Hi Stacey (AuthorSpot)! It’s great to see you smiling at your infusion! I also love that Erin (Hurricaneblair) posted one of her, too, so I guess I’ll join the trend! Here’s my Fancy Day outfit for chemo session #2 last week Thursday.

    image

    To everyone else, please don’t feel pressured to share photos on this public site! But if you are comfortable with it, it’s always nice to meet each other that way, too. :)

    -jess

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Hello ladies. Sadly I will be starting Paclitaxel (protein bound) within the next couple weeks. I will be doing this weekly for 3 months with Tecentriq every other week the 3 months. It's weird thinking I have to do this again.

    I hope everyone is staying safe during this trying time!!

    ~Katie 💗

    ipenelope (Katie)- Minnesota, USA

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