Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Starting Chemo in August 2020

Options
1246

Comments

  • d37
    d37 Member Posts: 73
    Options

    Nicole that’s great news that you don’t have liver pain now! I have heard that massage can help liver function so maybe the massage did cause your liver pain. Before I was diagnosed with metastatic breast cancer to the liver I had digestive issues for about 3 to 4 years. I thought I was possibly lactose intolerant, tried gluten free, had an endoscopy and colonoscopy but nothing was found. You mentioned you were gassy when you had liver pain. I was very gassy as well as bowel issues. Now that I am having chemo all of my digestive problems have gone away. I’m just wondering if anyone else has had that experience.

    Denise

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    Denise...YES!!! I was also kind of consitpated with very bad bloating gas pains for like 2 days...once that cleared the pain subsided...

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    Options

    For the second time this morning I have lost all my typing probably due to my Internet. I am not going to rewrite now but just have a question for Nicole. I note that you are having Neulasta post chemo. What I was told last week after my pet scan was that there is zero evidence that Gastrofils work for metatastic patients. I questioned that and the doctor I was talking to emailed my oncologist. I saw her by chance after chemo on Wednesday and she says we will see what happens after my blood work this next week. Nicole, did they offer it to you or did you have to ask?

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    I was getting it on Doxil so my MO just stuck with it. I take Grannix at home after day 1 treatment for 3 days , days 2-5

    Then after 2nd infusion/Day 8 They give me Neulasta

    My neutrophils have been very steady and good with it...they got low and we did the grannix. I don't know why they would tell you it doesn't work for MBC patients?

  • Duct20
    Duct20 Member Posts: 6
    Options

    Hello what is a BC board? I am doing well the first round was brutal I had every reaction minus trouble breathing. I have had a great couple weeks food actually taste good again. I lost 10lbs but I put it back on from trying to eat everything lol. I wanted to taste my food so I tried everything now I know what to do for this round of chemo on 9/24/20. Thanks for checking! How are you?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    Options

    Duct20, not sure where BC board showed up but can only thin breast cancer board.I hope your next round goes a lot easier.

    Nicole, I suspect in Canada that Neupogen/Neulasta/Granix are less easily obtained for MBC. Because we have free medical here in Canada there are limits on what will be paid for. I had to pay for Neupogen in 2012/13 until a certain point when BCPharmacare kicked in but luckily we have separate insurance from when my husband worked in Saudi Arabia so we got most of it back. My oncologist knows that I am willing to pay again and after this next blood work and maybe chemo on Wednesday she says we can talk about it. Meanwhile I did get back my PET scan results and now have a met in my iliac crest bone. That was a surprise because all of my mats over the past 3+ years have been in my chest. Besides the chest wall one that I can feel and the soft tissue one in the mediastinum/hylar area there is a nodule in my thyroid and I think some very small ones in my right lung and maybe left but not sure as it was a phone call for results. I will have a call from my oncologist on October 6 and will find out more then. My hair did fall out mostly in a big mass just over two weeks post first cycle and it was just before the scan so it was a pretty bad few days. BTW, I am glad to hear that your counts have been steady and that your liver pain is okay now.

    Marian

  • elderberry
    elderberry Member Posts: 1,065
    Options

    duct20: BC boards are the collection of topics etc for the BC Community Org. You can look up active topics, your particular form of BC (HER+, TNBC etc) stages (I, II, III, IV) or treatments (there are "threads" for pretty much all of the treatment out there) You can also type up a topic and see if there is already a thread. It can take a little jumping around but you'll find your spot. You can even start your own topic and create a "thread" that others may jump in and join and comment.

    I hope your next round goes better. Take medications for nausea, or insomnia, or anxiety, or depression -- whatever helps you get through the bad days. We are all in your pocket for September 24.

  • elderberry
    elderberry Member Posts: 1,065
    Options

    duct20: the more appropriate word to use in searches is "Forums" Let us know how tomorrow goes!

  • Duct20
    Duct20 Member Posts: 6
    Options

    Thank you for the information 🤗

  • Duct20
    Duct20 Member Posts: 6
    Options

    Thank you for information 🤗

  • Duct20
    Duct20 Member Posts: 6
    Options

    Thank you for information 🤗

  • zucchini
    zucchini Member Posts: 6
    Options

    Hi all, I started chemo in August but have been mostly lurking and overwhelmed with how much has happened since being diagnosed. I hope to have more to say going forward. Currently just beginning to come out of my 3rd course of TCHP. Thanks for being here. I'm here with you and hoping the best for you all, too.

  • positivelyhalffull
    Options

    Hi, everyone! I'm 44 years old, a wife, and the mother to two young adults.

    I was diagnosed with stage II, possibly even stage I IDC in July after having felt a lump and received my first TCHP chemo infusion on August 7th. Everything went fine until day four. I had nausea that my anti-nausea meds couldn't touch. I was exhausted, but I would sleep for 10 minutes only to be awakened by the nausea over and over. I also had vomiting and severe diarrhea. By day eight, I became mentally confused as well. At that point, my husband made me call my oncologist, who sent me to my local ER. Why didn't I call sooner?! I didn't know that what I was experiencing wasn't normal and I thought I would be over it soon. I received IV fluids and anti-nausea meds and went home. Ahh, relief! But soon, it all came back and I had to be admitted the next day. They transferred me, by ambulance, to the hospital where I have my treatments. I tested positive for covid on admission, so no visitors including my husband and I was still there on our 23rd wedding anniversary :( I never had any covid symptoms, but they did a chest xray and I had a mass that was pneumonia or possibly a tumor. My mom was diagnosed with stomach cancer at the same age I am. They kept revising her prognosis for the worse based on new findings and she died at 46. I have a follow-up chest xray scheduled for Tuesday that is kicking up my anxiety. I also have genetic testing results that I'm anxiously awaiting.

    BUT, round two of chemo, my oncologist lowered one of my four infusions that is known to cause diarrhea by 20% and gave me additional days of dexamethasone for my nausea. I wouldn't say I feel great, but I've been well enough to go to work full-time everyday except infusion day. I think I know how it's supposed to be now! Third infusion, Tuesday, bring it on.

    Thank you all for sharing your stories! You have helped me to know that I'm not alone on this crazy breast cancer roller coaster ride that I never wanted on and desperately want to make it off of alive.

  • Dubhain
    Dubhain Member Posts: 17
    Options

    Was diagnosed with triple negative breast cancer in June, most likely only Stage 2 based on the initial ultrasound and MRI tests that did not show it was spread to the armpit lymph nodes.

    Started the first of 4 AC infusions on July 31st, followed by Neulasta. Luckily all symptoms were mild. Yesterday was my 1st of 12 weekly Taxol infusions with no side effects so far except for dry mouth during the treatment. The pre-meds of anti-nausea and steroid did cause very slight lightheadedness which is a normal side effect, just thought it was weird cuz I hadn't experienced it in the past but it didn't last long anyway . Thankfully no Neulasta required, unless they notice my white blood cells getting too low. My red blood cells have continuously gone down each time since I since the July.l causing anemia. Had extra blood drawn yesterday so they could to test to find out if it's just an iron deficiency or related the chemo itself. If it is the energy deficiency my M.O. so that's an easy fix, but if it is related to the chemo it would require an infusio. Has anyone experienced the latter?

    On the plus side my MO said that some people have experienced re-growth of hair while on taxol. I don't think he meant that taxol encourages hair growth but rather it's due to not being on the AC anymore? I'm a bit skeptical though as one of the side effects of taxol is hair loss. I hope he's right though I wouldn't complain 🙂.


  • positivelyhalffull
    Options

    Dubhain, I hope your hair does begin to regrow for you!

    I was told, by the hairstylist where I purchased my wig, not to wear it when my hair begins to come back in. She said it would damage my hair. Has anyone else been told that?

  • brittonkb
    brittonkb Member Posts: 81
    Options

    Dubhain - Looks like I'm right behind you. I started AC on 8/3 and have my first weekly Taxol tomorrow. Hope you are still free from side effects. I'm a bit nervous but everyone tells me it should be easier than AC. My biggest complaint was the Neulasta so am happy not to have that. My MO didn't mention anything about hair coming back while on Taxol but I wouldn't complain.

    Positively - Good luck with your check xray. Hope it turns out to be nothing. Sorry for what you've had to go through too, although sounds like you may have experienced some relief now which is good. I haven't heard anything about not wearing the wig when hair starts back so not sure about that.

    Welcome zucchini!

    Nicole - That is great news that your pain subsided. Hope it has stayed that way!

  • positivelyhalffull
    Options

    brittonkb, I hope your first Taxol went well for you yesterday and your hair begins to regrow for you also.

    I got good and bad news. My followup chest xray looked good, but my tumor size was revised based on a breast MRI I'd had from 2 cm to 4 cm, so I may need a mastectomy now instead of lumpectomy depending on how much the chemo shrinks the tumor. I'm prepared to do whatever it takes to beat this though.

  • Gryffy38
    Gryffy38 Member Posts: 12
    Options

    Hi All,

    Heart rate question. Do you find that since you have started treatment your heart rate is up a bit (including your resting heart rate)? I am on herceptin and perjeta and have done 9 out of 12 sessions of taxol (on a clinical trial). My heart rate is definitely going up at times, not scary but I notice it. My resting heart rate was low 60s pre cancer and now i am averaging mid 70s. Workouts I am spiking up to 180s. I am also getting winded much easier. I was in great shape pre cancer (heart is in good shape as well and I am in my late 30s).

    Like all other side effects, you constantly feel like you are in someone else's body...uncomfortable.

    Anyone else experience this? Maybe body is fatigued from all the drugs?


  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    Gryffy....my resting heart rate is high since on chemo as well...like 90's... I heard HR's tend to be higher on chemo

  • Gryffy38
    Gryffy38 Member Posts: 12
    Options

    NicoleRod - Thank you, this is helpful to know! I hate to hear that you experience this, for your sake, but it is good to know I am not alone and it is "normal"

  • LKinKC
    LKinKC Member Posts: 41
    Options

    DeniseML

    I also had problems with mouth and throat sores while on TCHP. My suggestion is don't let it get to bad. FIRST i used salt water rinses. I finally called my MO she ordered something called magic mouth wash. (a prescription) it is mixed by the Pharmacist. It really helped me. Please check into it. Made a gaint difference for me.

    LKinOz

  • Dubhain
    Dubhain Member Posts: 17
    Options

    Briton, Taxol is definitely easie.'m currently in the process of 2nd Taxol infusion. 2 and half days ago I started experiencing uncomfortable upper body aches, mostly in my back, but my nurse navigator said just to take claritin and aleve combo, which I did yesterday and today. It's getting better but still a bit sore. My MO said it should subside soon, and said it was ok to take claritin on a daily basis as needed, but not to take aleve daily, but was ok to do so at first. He also said I shouldn't experience the aches again. Hope he's right. While its not debilitating it is uncomfortable. Hope you are doing well with your treatment so far.

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
    Options

    NicoleRod - Hoping your son's wedding went perfectly for you yesterday! Those big life moments are especially hard when your going through treatments.

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    thank you positively it was amazing. Here is a pic or 2

    image

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    image

  • positivelyhalffull
    positivelyhalffull Member Posts: 42
    Options

    NicoleRod - You look fantastic and what a blessing to have such a beautiful day for an outdoor wedding. Congratulations, I'm so happy you were able to enjoy it!

  • brittonkb
    brittonkb Member Posts: 81
    Options

    Beautiful pictures Nicole!

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    Thanks ladies :)


  • beesie.is.out-of-office
    Options

    Nicole, just popping in here to say that the wedding pictures are beautiful. And you are stunning! You look like your son's younger sister, not his Mom! Congratulations!

  • nicolerod
    nicolerod Member Posts: 2,877
    Options

    BEESIE!!!!!!! I miss you!!!! Thank you so much for stopping in and for the compliments!