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Chemo Starting September 2018

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  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018

    Several new folks since I logged on. Welcome, and so sorry you have to be here. The support is helpful, though.

    So, I think I’ve turned a corner after my first round last Friday. Day 5 (Tuesday) sucked. Mouth sores, some bone pain, and an upset stomach and I was up until 4 am, mostly related to neuropathy from my surgery. But yesterday was a lot better and my MO prescribed some ambien to help me sleep on my bad nights I slept 8 hours last night and feel like a new person. At least I know now how a cycle works for me. I’ll be going back to work tomorrow and think I’ll do okay 1 down, 3 to go

    @Elizabeth - I hope you get reassuring news about your liver

    @CPB - Our situations were very similar, although my oncotype was higher (38). Otherwise, node negative, clean margins, and I’m 55. I had a 26% recurrence chance with only tamoxifen, so I dry reluctantly signed on for 4 rounds of TC. But I struggled with the decision even as high as my oncotype was. I had a bilateral mastectomy hoping that would make chemo unnecessary. But I’ve made it through one, so I’m in. Good luck with your decision, and please let us know either way.

    @pcranky - Ice cream is therapeutic.

    @hbluv- wonder why the different recommendation on number of TC rounds? It really is true that it’s hard to get consistent answers.



  • ingerp
    ingerp Member Posts: 1,515
    edited September 2018

    pcranky--I definitely had sugar cravings through chemo and ice cream was my poison. I found that interesting--I've never been a huge ice cream person, but I had it daily through chemo (chocolate chip cookie dough--YUMMMMMMM!). I'm happy to report that while I still have plenty of sweets around here, the ice cream craving has gone away. If I could only get beyond chocolate/cookies/. . . . :-(

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018

    hbluv: my sister in law did 6 rounds of TC, she was stage 3 with multiple positive nodes. She was the opposite, ER- and HER2 + and also did herceptin

  • JNKK
    JNKK Member Posts: 68
    edited September 2018

    Day 4 today for me today. Day 3, I started feeling very fatigue, constipated (took stool softener after an ok from my OM, then had the big D. Maybe next time just take one pill instead of 2), minor bone pain on my lower back and hip joint. Dusted the house, went out for a walk, but that just about wipe me out. I took Tylenol to ease the pain before bed. This morning I am walking like a hunchback of Norte Damn. I will take Tylenol if I have to but really want to give my body a break from all the damn medicine and supplements I am taking. I am still fatigue but have to keep moving. I hope this is it for me.

    @hbouv, you can take Tylenol per my doctor.

    @ pcranky, you are pushing me to get going.

    @tigerlily, my lumpectomy is hurting a bit too after the infusion... maybe it is something to report to our MO?

  • pcranky
    pcranky Member Posts: 81
    edited September 2018

    Thanks JNKK - My husband literally made my MO write it down when she said I need to exercsie a little every day, even when I feel like I can't, and even if its just a little walking. I'm trying my hardest to stick to that beccause I know it matters.

    Now if i could just get the hydration down. Hard to start drinking alot after 40 years of subsisting on coffee

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018

    @JNKKK, good point...going in my symptom book. Today is day 8 and now we have slight mouth sores. Fun times. 

  • piksie
    piksie Member Posts: 132
    edited September 2018

    Enormously grateful for you all for sharing. I start 9/12 and have been glued to this thread while I prepare with my family.

    Kk2018 and beeline, thank you for the feedback on kids and cancer. I think they’re going to be okay. We talk a little about it every day, but not so much that it overwhelms them. They’re half-way interested in shaving my head, but mostly because I told them they could play tic-tac-toe. 😳 So we’ll see....

    EZrunner, you mentioned you liked the idea of using your head as an accessory like shoes, so I thought I’d share the fun that Amazon delivered today. I’m ready for this!

    Love and peace xoxoimage

  • kk2018
    kk2018 Member Posts: 54
    edited September 2018

    piksie-your amazon haul looks adorable on you! I haven't ordered any hats yet, but I did buy one Jon renauwig on clearance to test out before I commit to anything more expensive. I have so much thick hair-I have already cut a foot of it off but I still can't squeeze it under a wig cap to get any idea if it would really fit properly or not. Have I mentioned the hair thing gets me down? 😫😂

    I met with my nurse educator and went over the AC part of my chemo regimen. Holy shit it's a lot to process. Between the side effects, the possible damage to nearly all of my major systems, the list of food I shouldn't eat to the drugs for the drugs for the drugs. I'm thinking the Ativan script they threw in there had less to do with the supposed nausea than it does to the anxiety of having sat through that exhausting meeting. I have everything I need for Monday. My last drain is out and as long as nothing is red or yucky in that area I'm hoping my MO signs me off for chemo. I won't know until Monday right before my scheduled infusion!

  • Elizabeth9
    Elizabeth9 Member Posts: 31
    edited September 2018

    @Piksie I love your pics and your hats. I had a day today. Bought my two breast prostheses, and ordered a wig. I start chemo on Mon Sep 17. It is amazing how happy wearing these breasts make me feel. I feel like I do not look sick. Also saw the onco radiation doc today. Going the have 30 sessions (6 weeks at 5 x/week) on chest, nodes and collarbones, one month after chemo ends (early Feb?). I feel like I had the first good day today in a while. Wish me luck with my liver ultrasound on Tuesday, and that all is benign! Maybe because my plan is now clear, I feel hopeful. I am now going to go shopping on Amazon!

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018

    First day back at work since last Friday's chemo. I'm dragging a little, but did okay so I think next week will be fine. It was kind of funny/sad to watch people's reactions to my very short hair. Can't imagine what it will be like in another week when I'm bald!

    @Piksie - those look great. I have a couple of caps like the first one and a couple of scarves. Also, my chemo center had a box of free knit cpas out, so I took one of those, too. It'll be more useful in winter.

    @KK - It really is a lot to process and it's impossible not to be anxious about it. Hope you get the green light!

    @Elizabeth - please let us know about the US!

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018

    Just wanted to say hi and wish those starting next week well. I actually feel completely fine tonight - despite the lack of sleep last night (tried to go without Ativan or melatonin). I worked all day, cooked dinner, and had a glass of wine. Hoping for a good week and a half before round 2. Have a nice weekend all

  • hbluv
    hbluv Member Posts: 14
    edited September 2018

    For those that have started, have any of you purchased any nail strengthener or cuticle treatment? I saw that on the list of recommended things.

  • JNKK
    JNKK Member Posts: 68
    edited September 2018

    Hbluv- I didn’t purchase nail strengthner as my hospital is against it. I was told to use coconut oil on the nails instead.

  • hbluv
    hbluv Member Posts: 14
    edited September 2018

    What do you do with the coconut oil? How do you apply it? Do you let your fingers sit in it?

  • kjlcheval
    kjlcheval Member Posts: 3
    edited September 2018

    Well today was a long day for the first chemo. I tolerated it well but a little diarrhea tonight. Hopefully it’s just the stress of the day and not a side effect. I was really nervous going in and they were running behind. I closed the infusion bar tonight. They locked the doors behind us. Good night ladies

  • Paintersdream
    Paintersdream Member Posts: 5
    edited September 2018

    I completed my left breast mastectomy and complete lymph node dissection on July 31. 15 lymph nodes positive for cancer. Had my first chemo treatment on August 30 so thought I would join the September group. I am stage 3.

    Chemo went pretty smooth day of. I was given nausea meds through my port during infusion. Also given Neulasta to guard against bone and joint pain.

    Did not have nausea until 10pm that night then started taking nausea pills every 6 hrs for next 3 days to keep nausea at bay (this worked). I experienced severe fatigue. Just felt completely depleated. My body and mind were in a fog for 3 days. I also had a disgusting taste in my mouth. Also had headaches and took Tylenol as needed

    Even though I felt out of it I forced myself to drink lots of water and eat.

    But then at about day 3 post treatment I started to feel my old self again. By day 4 completely back to normal.

    My chemo is AC for 4 cycles going every two weeks. After that Toxal every week for 12 weeks followed by radiation every day for 28 days.

    May God keep us all in His tender care


  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018

    @Painter - welcome, and so sorry you have to be here. My chemo started August 31st, and I felt like this group was a better match for me, too. We're on different regimens (Mine's TC). One thing - neulasta doens't guard against bone/joint pain, it causes it. The pain comes from the bones (usually thigh bones and hips) churning out new white blood cells to make up for the ones chemo kills. It sounds like you managed to avoid it, which is great. I'd been advised to use claritin, which helped, but next time I will also take aleve in advance of the nuelasta infusion. Hope your course continues to go pretty smoothly.

  • JNKK
    JNKK Member Posts: 68
    edited September 2018

    hbluv - I purchased a small jar from grocery store, dip a little on my finger tip then rub it on all my nails. I do it 3-4 times a day sometimes more. It’s just a way to keep cuticles soft

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018

    @hbluv, I have black vinalux on my toes and am using nail envy for thin nails on my hands. Doctors had no issue, nurses seemed to encourage. I am using coconut oil and this organic cuticle oil daily. I did not organic nail polish remover as anything else is too harsh.

    Below are the products I am using every day. I got coconut oil at Whole Foods and using it on my body, lumpectomy scar, nails, and scalp. Also using this EES for my eyebrows, it may be going for FDA approval to spare loss, we will see. And using my regular drunk elephant on my face, always paraben free, etc. and I am taking biotin. My nails look great - will see if they stay that way


    image

  • JNKK
    JNKK Member Posts: 68
    edited September 2018

    So I am spotting... I freaked out thinking that I might have ovarian cancer now. Called the doctor on call, then was told that it is normal for a woman in premenopausal during chemotherapy. Just FYI, if you are experiencing the same thing, don’t freak out.

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018

    JNKK, I was just saying to my husband today that I felt like from here on out we'd walk in a different world - one where cells run amok. I got a little blood blister near where my port was installed and thought, "Here we go - blood cancer." You're not alone!

  • fairchild
    fairchild Member Posts: 140
    edited September 2018

    Hey, y'all! I had my first chemo 2 days ago and am sick as a dog....not throwing up, but feeling like it and generally wiped out. But I'll get through this for sure! 5 more treatments to go!

  • pcranky
    pcranky Member Posts: 81
    edited September 2018

    Fairchild - Sorry you are not feeling well :(

    What did they give you for nausea? maybe someone has a remedy that will help..

  • Cath4422
    Cath4422 Member Posts: 4
    edited September 2018

    hi everyone!

    I'm 36 years old, 2 small children, starting chemo tomorrow for triple positive BC. My treatment is at MGH in Boston. Looks like there are a lot of Boston folks here. I'll be doing 12 weeks of THP followed by mastectomy and most likely 8 weeks of AC to follow

    I'm so glad I found this thread. Really looking for a tribe to go through this with. Looking forward to getting to now everyone and supporting one another.

  • pcranky
    pcranky Member Posts: 81
    edited September 2018

    Welcome Cath.. so sorry you need to be here but glad you've found us!

    I'm just down 95 a few hours in NY. so I'll wave north from the infusion center.


  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited September 2018

    tiger lily - I looked at the same EES product and find it a bit expensive-wanted to buy 2 for 135$ but decided against it. I read some folks spent 400 $ on other product 50$ per one small jar but ended up giving 400$ And st the end lost eyelashes .

    With our regimen we might not loose it or loose half .

    What are you using for eyelash preserve- I might try Latisse

    Ps. EES - way better product than other.

    Cath- welcome, I m 41 with 3 kids and live in Topsfield, north shore. Tiger lily/ is next door , we are neighbors! Where do you live? Good luck with treatment!!please write your treatment and make it public in settings so we can see your signature

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018

    @Cath, I am at Mass General in Boston also. I am down 1/4 of chemo. We are on different regimens but if you have any questions about MGH feel free to send me a PM. I go next on 9/18.

    @Bostoniangal, I agree it is expensive but I think eyebrows would be the hardest for me and that product had the best info or more info than others. Have revitalash for lashes.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited September 2018

    Tigerlily, EES- is smart choice it’s approved , I would try maybe but I have some insurance expenses and bridge for 4,00$ to pay to dentist... I have bushy brows thicker , I n afraid to loose eyelashes more- I can draw eyebrows. I don’t know how to glue fake eyelashes !!! We shall see

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018

    I have a good friend who used the lash serum and kept her lashes through six rounds of chemo. And THEN they fell out! I'm in the countdown for losing my hair - it's day 10 for me. But I'm at peace with it. (I don't like it, but I've accepted it.) I'm more worried about serious health effects of chemo and hoping to avoid those.

  • luvbnggma
    luvbnggma Member Posts: 32
    edited September 2018

    help needed. I can’t get ahead of the nausea..no vomiting, yet but I feel it coming on. Any hints