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Starting Chemo April 2020

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  • wahoomama87
    wahoomama87 Member Posts: 194
    edited April 2020
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    BostonGal - thanks for sharing the port info! I get mine on Wednesday. Tea Tree Oil is an anti-fungal and can help your nails.

    Zee72 - I'm nervous too! We'll get through this together. Let me know how it goes on Monday.


    Kris


  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    I will "train" for chemo next week!. My nurse trainer told she hopes I can then start chemo the week of 4/13. That's "good news" to me as my port was just inserted yesterday and it's good to have time for that to heal. So far, my port's been a bit annoying only in that it became itchy today. This could be from the steri-strips, glue, and antiseptic applied to the skin I was told by my wonderful oncology nurse and that I could use Claritin to try to calm this down. Hope I don't jinx things by saying I think it is working. Got to take nice shower today as well and am looking forward to dinner, resting in fresh bed linens and watching some entertaining shows. And my cat, who spends the evenings warming my feet and heart...It's the simple gifts that make the difference I tell ya' ladies and I am grateful. Blessings to all.

    And as to my locale, I am a real Boston, MA Gal!

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Greetings JavaJana!

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    My name is Zarin, you can address me either which way. In school, Zee was my nick name! About working during the next few months as I get the chemo... Due to the virus, we are barely seeing any patients, since the criteria to see a physiotherapist is very specific. Most consults are over the phone. Spending rest of the time working on projects and preparing patient education material. So in this way the virus is a blessing! Silver linings...

    Tomorrow I go in for my cardiology appointment, followed by putting in the port on Monday. It’s comforting reading everyone’s responses. We are all geographically far but I’m so happy to have this connection.

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    I am glad Zee to hear you too are finding reassurance here! My port , inserted Thursday, was unsurprisingly a little sore/uncomfortable for about one day, for which I took few Tylenol only. But...I must say, what bugged me and worried me was that it got itchy, likely due to steri-strips, glue , and the antiseptic used my oncology nurse said. I took Claritin after approval by the nurse and today I seem to be fine.

    I enjoy hearing you are working on projects - that inspires. BostonGal

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    jelloelloello — I'm so grateful my words gave you reassurance before your treatment. Even more grateful your treatment went well.

    This is what I've taught my daughter and GrandChuckles to prepare them for the day I'm no longer here. Whenever we say goodbye, I blow them a kiss. They catch it and put it on their cheek. No matter where or when for the rest of their lives, they always can put a hand on their cheek and feel my love.

    You're now a part of my family circle, so whenever you're feeling unsettled or scared, just put your hand on your cheek and feel me hugging you and saying “everything's gonna be ok."

    I'm in Dallas: my hugs and kisses are Texas sized. :>)

    j

    .

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    I wish we could comment directly under a post...it gets a little confusing scrolling up and down and between pages to see all the posts, so in general...HELLOOOO to our couple of newbies who have joined our group...Zee, Jana, and AuthorSpot and whomever else I have missed.

    Grateful to hear that Jess (@jelloelloello) and BostonGal’s chemo and port placement went relatively smoothly.

    Had a MO appt yesterday to review PET scan results...overall good, YET there was an area that lit up kinda near my 4th rib on my right side (same side as cancer) that they thInk is an interior mammary lymph node and two small pulmonary nodules (<0.5cm) in both lower lobes. Sooo, I will have a Chest MRI next Friday, April 10. We talked about starting chemo this next week after my port is placed on Tuesday, but in the short distance between the exam room and the front desk and scheduling hassle of the Chest MRI and another appointment with MO next week, we left without actually scheduling the chemo!🤦🏼♀️ I will try to figure out how to send them an email/message this weekend to see if we need to get that scheduled for this week or after MRI.

    Erin

    PS...Jess... I am from Illinois if you want to put that on the roll call

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    To Everyone —

    I've read several of you received your diagnosis only ten days ago. My heart is numb for you because that's how I still was ten days out. I'm in awe of your ability to cope with the news much more so your ability to make monumental treatment decisions while still processing the life altering news you just received.

    A weird discovery during my initial breast cancer workup in 2016 delayed the treatment decision making process as test after test was done trying to determine why my pulmonary arteries were so abnormally enlarged. Two months later, the conclusion was surgery to remove the breast lump was the way to go — no other treatment was safe.

    There is no treatment for the enlarged pulmonary arteries. Now three and a half years later, they are three times bigger than they were. Thankfully, I lived three years with no evidence of breast cancer progression and my pulmonary arteries did not rupture.

    In those three years, I had lots of time to process, to decide what I would do if breast cancer came back — you've had ten days.

    Y'all are so brave.

    j

  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    I agree, it would be so much easier if we could just reply to a post underneath. Welcome to all the new ladies on this thread. The group is growing and we can all get through it together!

    I had my first infusion of TC yesterday. I tolerated it fine. It was a little lonely because of the no visitor policy from COVID-19 but I managed. Today I had the Neulasta shot and am feeling a little achy but I took Claritin beforehand and it should help with potential bone pain. I had ice packs on my finger and toe nails during Taxotere infusion and I chomped on ice chips so fingers crossed it helps avoid nail issues and mouth sores. We shall see. Happy Saturday to everyone!

  • Hurricaneblair
    Hurricaneblair Member Posts: 39
    edited April 2020
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    Sherri (Sugar77)...I am so glad to hear you tolerated your first TC fairly well yesterday! And you have proven to us that we can be there alone and manage to make it through.💗 And when we do get lonely, we will put ourhands to our faces and feel J’s(ByHisGraceT) big, Texas sized kiss and know she is telling us “everything’s gonna be okay”.

    Did you bring your own ice packs for your hands and feet? Did others look over at you and wonder what you were doing?

    Hope you continue to feel okay this weekend.

    Erin

  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Hello everybody!

    My first chem was on last week of March. It didn’t go well. I had a severe allergic reaction to the drug, almost passed out inthe chair. It was terrible. The doctor has to order new medication, so waiting for the insurance approval. That was my story so far.

    I am so glad to find this group, knowing that I am not alone on this chem journey during once a lifetime covid 19 pandemic. Wish everyone good luck!

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    HI109: Welcome to the group! You are not alone— you've found a very supportive group of people and we all are here for each other. I’m sorry to hear about your allergic reaction. Hoping that your new medication gets approved quickly so that you can get back on track with your fight!

    I’ll add you to the Roll Call at the top— a handy way to keep track of everyone’s names. Please let me know if you’d like to share another name we can call you and/or your state/country to add to the list.

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Reading all the posts and catching up

    You all are amazing.

    Welcome to new members and fond Sunday greetings to all.

    BostonGal



  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    HI109 — know allergic reactions leave one feeling yuck for several days. Hope you are improving and feeling stronger today.

    j


  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Thanks for the welcoming. You can call me Emma. I am currently living in NYC. The hot zone area.

  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Byhisgracetwice - thank you. I still not feeling 100% back to my old self, but I am getting better.

    FIY, ladies. While doing chemo, paid attention to your skin. While I was getting the infusion, my skin on my wholearm was turning red, so I asked two nurses if it was normal. They said it was fine. 10 minutes later, I almost passed out. I did not know I was having a rash on my arm. Should have read the drug information before getting chemo. Next time I will be more careful. Speak up for yourself.

  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    HI109 - wow that’s so scary about the allergic reaction. Glad you’re okay. I learned the hard way the first time doing TC chemo that I reacted to the cyclophosphamide if it was infused at the normal speed. I had to beg the nurse on Friday to run it slower for me. She agreed to run for an hour instead of the usual 30 minutes. Otherwise I get a severe headache and lingering sinus pain.

  • zee72
    zee72 Member Posts: 21
    edited April 2020
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    Am leaving home in a few hours to have the porta cath inserted. What advise have you all been given regarding doing upper body exercises with the port? I normally practice yoga on a daily basis which involves a lot of weight bearing through the upper arms.

    Look forward to your replies.

    Zarin

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    Zarin — hope all goes well on the port placement. I've had mine in for ten days now and most all discomfort is gone. Warned not to lift or weight bear for a couple weeks and to let my body guide me. If I felt it, stop what I was doing and give it another few days. Right after told to keep ice on for 20 minutes, off for 20 and repeat. Made a big difference

    j

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    Today is Monday morning (where I am in California), so I wanted to give a shout-out to everyone that is supposed to start chemo this week!

    • Justyne (JustyneF): starting today!
    • Erin (Hurricaneblair): maybe starting Tuesday... Let us know if you were able to make your appointment!
    • Jana (JavaJana): starting Wednesday!
    • anyone else?

    I am so excited for all of you to take this big first step in your cancer fight! I know it may be scary, but we are all here for you, going through it alongside you, sharing the same fears, worries and questions as you. We're in it together, and that makes me feel better so I hope it does for you, too.

    Also a big shout-out to those of you who have already started chemo and are now in your first or second dose. Let us know how it's going, what patterns you've discovered about your side effects, and things you're glad you did or things you wish you did differently.

    Thanks to all of us for creating such an awesome, supportive group! I'm so happy to get to know you all. If I missed anyone in the Roll Call, please let me know.

    Thanks! -Jess

  • AuthorSpot
    AuthorSpot Member Posts: 15
    edited April 2020
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    Zarin— the port is not bad at all. Mine actually flipped over and had to be redone. They said that is super rare though. Lol. But you will have to hold off on the weight bearing yoga for a week or so.

    Jess—my real name is Stacey and I live in Illinois. 😉

    So I had my first AC treatment last Tuesday, and everything has been relatively easy so far. However, this morning I woke up and hurt all over. Bad headache, sore throat, muscle and bone aches. No fever or chills. I took some Tylenol and it’s a bit better. Seems like a weird delayed reaction. Anyone else

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    Hi Stacey (AuthorSpot)! Thanks for sharing your info-- I've added it to our list. :) I'm not taking AC (doing Taxol first, then AC afterwards), but I also have had a relatively easy time so far for my first infusion. I didn't feel much until yesterday, which was Day 4 for me-- muscle and bone aches, sore throat. I slept A LOT-- three-hour nap in the afternoon and good sleep at night-- and then this morning (Day 5), I woke up feeling pretty good! No headache, some body aches but mostly I just feel tender like I'm bruised all over but not actually in pain.

  • jelloelloello
    jelloelloello Member Posts: 83
    edited April 2020
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    Fun idea for chemo:

    So I've been home during quarantine (L.A. is on lockdown, in addition to my own self-quarantining) and working on cleaning my closet, and I came up with a fun new plan for my chemo treatments. I've decided to dress up for each one, since it's literally the only time I get to leave the house anyway! For my first treatment last Thursday, I just wore my favorite, comfy outfit: a sweater tunic and fleece-lined leggings. But here's my plan for upcoming treatments with fun themes:

    2nd treatment: Fancy day - will wear a nice dress and actually put on makeup (it's been a few months since the last time I wore makeup!)

    3rd treatment: Disney day - will dress for a fun day at the parks, including Mickey ears

    4th treatment: Rave day - will wear some fun, bright things from my rave days, or at least some kandi (bead bracelets)!

    5th treatment: Hawaii day - will wear some aloha wear to pretend I'm at home (I'm originally from Hawaii) or on a relaxing tropical vacation

    I have 12 weekly treatments of Taxol to work with, but that's all I came up with so far. And maybe I will keep it going through the upcoming 8 weeks of AC treatment, too. I guess I'll just see how I feel!

  • sugar77
    sugar77 Member Posts: 1,328
    edited April 2020
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    jelloelloello - love this idea so much!! I'm inspired now, too, to spiff up my outfits for my infusions. I'm home in quarantine as well but haven't had the energy to go in my closet. Maybe in a few days I'll muster up some interest in doing more around the house. I'm three days out from chemo and am really trying to take a daily walk (socially distanced, of course) outside. I did 5300 steps on yesterday's walk but it wore me out and my husband and daughter had to cook supper :)

  • pjb61
    pjb61 Member Posts: 38
    edited April 2020
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    Hi all. I'm enjoying reading about all of your experiences. I won't be starting until the 20th, so not much to contribute yet myself. I do have a suggestion though. It would be helpful to know what type of chemo each of you are receiving. Some have it in their profile and some don't. When someone says they had side effects, I always wonder if they are taking a drug I will be taking.

    I wish you all the best! Thinking of each of you and saying prayers that we all get through this. Not exactly a good time to be immuno-compromised but what can we do? It's not like we planned it!

  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Sugar77- It is eye opening for me knowing that the infusion time does not to be fixed. I always have the impression it has to be finished in a fixed time.

    Unfortunately there is trial and error for us going through this chemo journey.

  • BostonGal
    BostonGal Member Posts: 154
    edited April 2020
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    Hi all,

    I'm catching up on the new posts. God bless you all.

    THE PORT! Yup. It's a foreign object in the chest and I hope with time, I might not even notice it! The itching around its incision has calmed down. But I am definitely not planning on over using my arms for anything given the port and the mastectomy. I reached to turn off a lamp last night and I was reminded of that! It felt like a giant rubber band was being stretched in my arm pit and it slipped! Time and patience are the keywords I guess.

    Had my chemo training today - very positive experience.

    BostonGal

  • Hl109
    Hl109 Member Posts: 8
    edited April 2020
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    Zarin - hope everything goes well with the port. I don’t have a port. My treatment is once every three weeks. 4 times, so I will have my vein poked 4 times.

  • byhisgracetwice
    byhisgracetwice Member Posts: 218
    edited April 2020
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    Emma - which did you react to the Abraxane or Herceptin? Are you feeling better?

    BostonGal — what did they teach in chemo training? Anyone else have chemo training? I haven’t been offered anything like that.

    Zarin — you doing okay after today’s port install?

    j

  • Bon43
    Bon43 Member Posts: 14
    edited April 2020
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    Hi Everyone

    I also started my treatment today. I am on FEC-D treatment plan. So FEC is the first round (3 diff meds, once every 3 weeks). Then D portion starts for 3 cycles, once every 3 weeks for total of 18 weeks. Then surgery planned as well as Herceptin beginning after this 18 weeks. I was also supposed to get my port in this past week but our OR is limited due to covid19 so they think sometime next week which made me nervous because my immune system will be low at that time. My nurse thought they could continue with the arm if I don't get the port. Does anyone have experience with multiple treatments in the arm?

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