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Chemo Starting September 2018

Good morning! I was very happy to see these threads/groups for folks starting chemo each month and decided to start one for September. I am starting 4 rounds of Taxotere/Cytoxan (Docetaxel/Cyclophosphamide) - who names these things? - or “TC" on 8/29 in Boston.

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Comments

  • hbluv
    hbluv Member Posts: 14
    edited August 2018

    Hi,


    I too will be starting in September but haven't decided which cocktail to take, ACT or TC. Dr. recommended ACT and was initially reluctant to mention or recommend TC, but ultimately said that is ok too. Tigerlilly, did your dr give you options and if so, why did you chose TC? Although, I'm also curious, since you are stage 1 and HER2-, were you offered hormone therapy only?

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Hi hbluv, I was only given the option of TC, I was told it is mid grade. Not the strongest not chemo-lite. I could have chosen to not do chemo, but was encouraged to because my oncotype came back at 20 and I am 45 and premenopausal. It cuts my recurrence rate in half and while it is low I did not want to regret it if it ever came back

  • LesM321
    LesM321 Member Posts: 1
    edited August 2018

    HI, I to am starting chemo next month. BMX done BC was Stage2a no lyphmnodes involvement, margins clear. My ONCOTYPE came back at 38. They pushed for stronger chemo but I chose TCX4.

  • hbluv
    hbluv Member Posts: 14
    edited August 2018

    LesM,

    What made you opt for the TC instead of the recommended treatment? Also, we were told that if we chose TC, it would be 6 doses, not 4, but that could be due to the aggressive nature of my cancer.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Where are you both located (you can be general if you want).

  • jackster51
    jackster51 Member Posts: 139
    edited August 2018

    For those doing Taxotere, you might want to check into cold caps.. I had Taxotere 7 years ago and never got my hair back.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Sorry to hear that Jackster51. I am doing the cold cap

  • pcranky
    pcranky Member Posts: 81
    edited August 2018

    Hello Septemberites

    I don't have any details yet, and won't until my appt on Wednesday, but my Oncotype came back 30, and chemo will be happening, no doubt starting either very end of aug or beginning of Sept.

    Here's to getting through this together.

  • piksie
    piksie Member Posts: 132
    edited August 2018

    Hi ladies. I am three days post-op and found out today that I will be doing chemo before radiation. I was hoping to skip it, but my surgeon used the words "aggressive" and "corrosive" to describe my lymph nodes and said she can't even give me a number because they had clumped together. So definitely chemo. Hindsight, I probably should have done both after my first round of cancer, but with an Oncotype of 17, I took my MO's advice and skipped it. No turning back....

    I have no idea what the cocktail will be, but I'm assuming it will start in September. So here's to an easy go of it for all of us!

  • kk2018
    kk2018 Member Posts: 54
    edited August 2018

    I will also be starting in September-have my big meeting with my MO this week. Based off of my biopsy I was told 4 DD AC and 12 weekly Taxol (plus radiation afterward). There were no suprises during my bmx (other than the total # of nodes) so I’m expecting this regimen to stay as expected. I’m anxious. I’m 2.5 weeks out from surgery, still have drains and dread the possible SE on top of current uncomfortable sleep and muscle spasms.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Hi pcranky, piksie, and KK2018, wish to God you were not here but also glad this group is starting to fill up. I am thankful for the company. I had lunch with a friend who went through this ordeal - and still is - two years ago and shares my oncologist and it was so helpful! I have been shopping like crazy to be prepared, scheduled acupuncture, got my cold cap kit yesterday, and am off to CVS shortly to get my flu shot. I am leaving on my last work trip for a while today. Just seems surreal. If you have not seen them already the shopping lists posted are helpful.

  • pcranky
    pcranky Member Posts: 81
    edited August 2018

    Tigerlily31: I've started shopping because it makes me feel better. My MO told me I didn't need to rush with the flu shot though I might anyway.

    I have decided not to cold cap. The way my mind works It'd be less stressful to lose my hair than to be constantly vigilantly checking to see if its not falling out. Plus I"m peri menopausal and having non stop hot flashes.. being bald for a time sounds like a relief. I actually have no idea what my scalp looks like..I hope i have a normal head.

    I'm most worried about three things... nausea, mouth sores and kidney stones - the last one in particular. I have one right now that isn't causing me tremendous pain but its kind of refusing to pass and I don't want to go into chemo with the little PITA still there.

    And the unknown. I'm scared of the unknown. These threads help.

  • WC3
    WC3 Member Posts: 658
    edited August 2018

    I started TCHP in June. I just wanted to say, may the chemo kill your cancer as fast as it kills your taste buds. I'm 6 days past my infusion and I could taste breakfast but barely lunch.

  • hbluv
    hbluv Member Posts: 14
    edited August 2018

    Tigerlilly,

    Can you post a link to which cold cap you purchased? Thanks.

  • beeline
    beeline Member Posts: 193
    edited August 2018

    Hi everyone, sorry we are all here! I am jumping the gun a bit and joining this thread. I haven't met with the MO yet, but have been told chemo will start for me in the next 3-4 weeks. From the description I was given it sounds most likely to be AC + T. I am pretty terrified of the unknown here -- especially having spent the past 2 weeks assuming my pre-op stage 1A meant I would be skipping this part!

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Hi hbluv, https://www.paxmanusa.com/.

    I am doing Paxman because they have the chairs at MGH in Boston were I am being treated and I have the kit and will have to put it on but the nurse will hook me up to the machine. It is all part of the chemo “pod”. My sister in law used penguin caps a few years ago and did well but it was before MGH had the machines at their centers and they had to supply their own dry ice which was a real pain. She was double negative, HER 2+ and I am not sure of the exact chemo but stronger, I think AC, and she had to do six rounds. I have to read all the stuff and watch the videos and practice with the cap this weekend. I cut my fair to my chin. For the last six weeks or so I have been losing hair in the shower, a little ball each morning. Maybe just the heat. I already use a sulfate free low lather shampoo. I have a lot of hair but it is fine.


    Welcome Beeline. I am 1A and it stayed that way through surgery and was also hoping to avoid chemo. Alas....I made call based on an oncotype of 20, which I got because it had not spread to my lymph nodes, and my age (45)

  • kk2018
    kk2018 Member Posts: 54
    edited August 2018

    Hi beeline-we are in a similar boat (age, stage, mx date). I meet with my MO on Friday. I’m anxious to get started and anxious about starting. 2 kids in fall sports, school open house, orthodontists and back to school shopping-I’d feel busy in my old life, adding chemo to it all is scary. I remember when my surgery date was assigned I felt like my heart stopped for a second. I imagine my chemo start date will be much the same. I haven’t done any chemo shopping/prepyet. Denial? 😬😫

  • pcranky
    pcranky Member Posts: 81
    edited August 2018

    Hi All,

    Met with my MO today and we have a plan. AC-T but in reverse order (NYU Perlmutter do Taxol first then AC)

    Starting 9/4

    I'm ok with this, the only one I really didn't want was Taxotere.

    They, by default, ice hands and feet for Taxol which I was happy to see.

    I'm nervous but glad to be getting going

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
    edited August 2018

    Hello lovely ladies,

    Stopping in from the April chemo thread. I feel so mad whenever I see a new thread come up with new people joining in. That being said, you guys will find lots of good advice and support here and amongst each other. I finished ACT last week. Still struggling with SEs. Surgery in sept.

    You are strong women, each one of you, you can do it. Its okay to cry, shout and rant. Its okay to not get out of bed and its okay to ask for help. Ask questions, no questions are silly questions. Read up on some of the prev months threads, they give you a good idea about whats to come. Write notes about your SEs, they follow a pattern. Drink lots of water, keep eating, you need your strength. Talk to your MO or Onco nurses about any questions you have. Do not miss anti nausea meds. Stay off google and be kind to yourself.


  • beeline
    beeline Member Posts: 193
    edited August 2018

    KK2018 - oh my, we are just about bc twins! I wish for both our sakes that wasn't the case! I also have 2 kids busy with school activities and haven't even started thinking about shopping/prep yet. I think I am still in shock that this is happening. It still feels like a bad dream that I might wake up from. I wonder if that feeling will ever go away...

    pcranky - glad you are getting the treatment you're ok with. I wonder why they do it in reverse?

    Frog - thanks for stopping in with your words of encouragement. I could definitely use some!

  • kk2018
    kk2018 Member Posts: 54
    edited August 2018

    Beeline - I definitely say "I can't believe this is my life" in my head quite frequently. There was this terribly ill young woman in the oncologists waiting room and it made my heart hurt. I'm young and vibrant and strong - how can I have cancer?? I am definitely still in shock but I'm doing my best to feel positive. I think it matters. I'm also determined to not "lose" this chemo/radiation year. I'm not sure how I will feel through all of this but I am going to try to do as much as I can that makes me happy.

    Met with my MO today. 9/10 is my start date for my 20 week AC-T plan. Gahhhh - I'm nervous! Have my chemo class and Echo and some bloodwork and then I am all set. I don't want to do this but I want get started, all at the same time!

  • kjlcheval
    kjlcheval Member Posts: 3
    edited August 2018

    The journey becomes real when you meet with your MO! I begin chemo September 7th with TCHP & Neulasta. 21 day cycle for 6 treatments. Hopefully what was seen on my liver is not cancerous and I can then go to surgery. If not then my journey changes. That’s just a little frightening. Insurance has been denying everything it seems. My MO’s nurse practitioner says she has a way of getting things done. So I think a few tears will be shed in the next few days (I can cry reading a book!) plus it’s that time of the month (that won’t be happening any more! Whoohoo!). My husband lost his previous wife to colon cancer. I feel guilty. So the next 2 weeks...hopefully PET scan, echo, port...my sister has a port (CF & double lung transplant). Life marches on

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018

    Tigerlily, thanks for starting this thread. This group may make more sense for me than the August group, since I am starting chemo on August 31st, TC X 4. I'm having a port installed on the 29th. I'm nervous! Less worried about hair loss and more worried about neuropathy and mouth sores. Probably like everyone else, this whole thing just seems surreal to me.

    LesM, my oncotype was 38, too, and they actually recommended the TC protocol as the best option for me. (Both the first MO I saw and the one I went to for a second opinion and switched to). I also had clean margins and no node involvement.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    Hi wanderweg, I start Wednesday (gulp!).l and am also TC.

    I think I am ready, nothing left to buy or read! Just have to practice with my old cap and watch those videos and freeze my hand and foot stuff. Have acupunture on Tuesday. Feel normal this weekend. Went to Zumba today, had some really nice red wine with dinner, and going to the beach tomorrow.

    Starting to over hydrate. Went to the store today. Been eating mostly veggies but have rice, the Whole Foods verison of Club crackers, non-sugar added yogurt (sigg’s), tomato-turmeric soup, and smoothies from Daily Harvest, and tons of coconut and water melon water

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018

    Tigerlily, it's coming up fast, isn't it? I know the icing is supposed to help, but I have nerve damage from my exchange surgery (something about the way I was positioned put pressure on a nerve) and now one foot is completely numb and hypersensitive to cold. I can't even put my barefoot down on the wood floor without it aching like crazy. I've read about glutamine being helpful for chemo-related neuropathy and I'm going to ask my oncologist about it.

    I am going to try some coconut water. I tend to stay a little dehydrated and am too thin (for chemo anyway), so I'm working to change my habits so that I'm drinking more and also trying to gain a little weight. I was one of those people who has always had a very healthy diet and it's one of the things that threw me about getting cancer anyway. But I know we haven't begun to identify all the causes of cancers. In the meantime, I'm also making sure I have some of the comfort-related items people have recommended - biotine oral rinse, ACT lozenges, and so on - and packing a chemo bag. I'm scared but wanting to get to the other side of all this.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    @wanderweg, I have all that stuff too. Have spent a zillion dollars between CVS and Amazon. I also am very healthy - not perfect, including when I travel which is a lot - but especially at home. No processed foods, no soda, all organic, limit red meat, and only grass fed...etc. But am really focusing nowon added sugar and ensuring lots of veggies every day. And sticking with supplements - I can keep organic multi, biotin, probiotic, fish oil, CoQ10, extra D and C thru chem, have to stop tumeric and Chaga. I am also microwave free, paraben free on everything. But alas. Just going to double down where I can but also not stop living.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018

    sending good thoughts kjlcheval....I hope you will keep us posted and we can support you.

  • pcranky
    pcranky Member Posts: 81
    edited August 2018

    Tigerlilly - I have just spent so much money on Amazon that I think I could cause their stock price to go up. I am, no doubt overdoing it, but at the very least I'd like to know i have what i need on hand.


  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018

    @ Tigerlily - My oncologist said my multivitamin and D was fine, and I've sent him a message making sure I can take glutamine and biotin. For food I'm trying to strike a balance between eating healthy during treatment and making sure I can just get enough calories in to keep myself going. I don't know how it will be if my taste buds change and only bland things are palatable. But I see it as a relatively short-term problem.

    @pcranky - I have also been helping make Jeff Bezos an even richer man.