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Starting chemo February 2018

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CBOK
CBOK Member Posts: 68

I've searched several times and have not found a thread for this. So...

Anyone else out there?

I'm starting 4 rounds of dose dense AC, followed by 12 weeks of Taxol.

I'll be starting the week of the 4th and they're letting me decide what day to start on but I'm struggling to figure that out. I'm aiming to disrupt things the least for myself and everyone else but since I don't know how it will make me feel that's difficult.

I'm way more scared about this than I was the mastectomy.



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  • Ewdubs
    Ewdubs Member Posts: 5
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    I went on Tuesday’s andfound that I usually got sick around the third day after the chemo infusion. I was particularly nauseous and tired so that lasted ten days for me. We actually had a spreadsheet of all the anti nausea meds I took all day long to keep them straight. I was on three week cycle and was able to go to work the third week right before I started again.

  • ButterflyLily
    ButterflyLily Member Posts: 101
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    CBOK, we have similar profiles and treatment. I'm starting AC on Feb 9th every other week for 4 sessions, then 4 sessions of T. Trying to get as ready as possible. I too don't want to dirsupt my daily activities too much. I hope thats the case! Are you planning on getting a cold cap? or wig?

    Hugs

  • Pbello
    Pbello Member Posts: 83
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    Hi February ladies, I think I'll join this thread. I am not sure when I will be starting Chemo, but thInk it will be February. The Oncotype wasn't available during my last visit to my MO. I will find out this week (I hope!). I too had a mastectomy and am more scared about the chemo than I was for the surgery. Yet I want to get this started with as soon as possible. The waiting is so hard for me.

    ButterflyLilly - I am highly considering the cold cap. I have a 5 year old and a 21 month old. My biggest worry is how they will react to me loosing my hair. They had a hard time with me being at the hospital for 3 days recovering from the surgery. At my cancer center they have the dignicap. What type are you considering?

    CBOK - I've been reading through other chemo threads. It seems that most have their hardest days on 3-5 post treatment. But it depends on the person and on the chemo medicines

    Ewdubs thanks for your input! What was the chemo medicines you were given?

    Hug

  • CBOK
    CBOK Member Posts: 68
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    I'm already planning to get it cut off into a pixie type cut on Tuesday. I'm going to donate it and do something fun like blue/purple for a couple of weeks (when else could I get away with being a punk rock accountant? ha). Then I'm just going to shave it when it starts to go. My doc told me that the cold caps don't work as well for adriamycin as they do against other drugs. I absolutely hate being cold so to me it wasn't worth it unless I knew for sure it would work. And I love my hair so that says just how much I hate being cold. I've been talking to my kids about it but I don't think they're excited about mom being bald but they're old enough to understand at least. 10yr/6yr

    I went to the store today and picked up another 4 prescriptions and what felt like an entire cart full of OTC stuff they told me to get to help with side effects.

    Are you guys getting the Neulasta pod thing? I am freaked out by that, I think I'd much rather just go back to get it at the treatment center. Honestly I'd rather get chemo on Friday but that means I would definitely have the pod as my only option to receive Neulasta so I don't think that's going to work for me. I live and work close to my treatment center so I'd prefer not have anything else attached to me since I just got the stupid drains removed. Not a fan of extra hardware.


  • indahood
    indahood Member Posts: 122
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    Hi everyone.

    Metoo I start Feb 2. 4 rounds TC. My real life name is Laurie.

    CBOK I'm doing the same as you, cutting the locks short the night before. Its true you have beautiful hair me too my hair is a source of pride but still I decided against cold cap because of cold pain.

    Never would have cut my hair it if not for the chemo so plan to have some fun with it. Let's post our looks! I'm actually having a wine and cheese hair cutting party with close friends. I live alone so I'll need them. Unfortunately I dont get to partake in the wine ho hum.

    🦋 butterfly sorry to hear you have to go through this with little ones. Mine are all grown but I feel for you young mom's. I'm sure if you were to loose your hair although it might be a shock at first, they would quickly adjust. Children are resilient and soon enough the lack of hair wouldn't even phase them. It's we adults that hang onto stuff much longer. Good luck with your decision.

    Cant recall who talked about it but What is a nuelasta pod? I'm getting nuelasta but as an injection that I have to give myself which I'm a bit wary of.

    Hi Pbella hope you get your timeline soon. Waiting is agony, I agree.

    Anyone else getting bs remarks from people who want you to not have chemo? I'm so over that. I feel it's so insensitive. Just because you watched a documentary doesn't make you part of my medical team. Anyway end of rant.

    I'm sending Good vibes to all my new Feb Family. Let's knock em dead!

  • DaffodilQueen
    DaffodilQueen Member Posts: 1
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    I’m headed into my 2nd round of chemo. Round 1 was Sept. to November 2017, and each round was three weeks apart. Surgery the end of December. Round 2 starts Feb. 1, and each round will be two weeks apart. Based on how I felt in the fall, I am not optimistic about being able to do much during February and March. But I’m running out of FMLA. Anyone else having a similar work-related issue

  • CBOK
    CBOK Member Posts: 68
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    The Neulasta "on body" pod is a little device they stick to the back of your arm that has a timer on it and 27hrs after your chemo it automatically injects the medicine over 45 minutes. Once it's done you can just take it off and trash it. It's a great idea for some people who are far away or really hate having to go back to clinic. To me the trade off of convenience doesn't outweigh my distaste for having things "on" me. But lots of people love the extra convenience.

    Daffodil, are you running out of the FMLA time and you're worried about getting fired or just running out of paid time? If that's the case maybe you could file for temp disability. The company I work for is too small to be covered under the rules of FMLA anyway. We don't even really have a leave policy. But I'm extremely fortunate in that my boss is a good guy and has been awesome so far about it all.

  • Debsmisto
    Debsmisto Member Posts: 106
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    Hi everyone, I will be starting chemo Feb 8th, scared to death so it will be nice to have you all here to go thru it with me! My regimen is PTCH. Thanks for any and all input, suggestions, words of encouragement, Prayers Deb

  • rockcity
    rockcity Member Posts: 155
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    Hi all,

    Add me in to Feb. chemo group. Im pretty scared myself. I’m starting Feb 6 with six tx of Herceptin, Taxotere and Carboplatin, every three weeks with Herceptin continuing for a year. I just picked up a shopping cart full of prescription and otc drugs for the side effects. Ugh! I plan to use penguin cold caps to try to save some my long hair. I also plan to ice my hands and feet during taxotere. It’s sounds like chemo day will be a busy freezing day. I so do not want to deal with chemo, but there is not a good alternative. Hopefully the fear will subside for all of us once we actually get started.

    Let’s get this done

  • moderators
    moderators Posts: 8,290
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    We are rooting for you all, and happy you will have one another to share your experiences and advice. Medicating

  • indahood
    indahood Member Posts: 122
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    Welcome to you too, Rockcity. We have almost the same DX. I start this Friday Feb 2nd. Got to admit to not being ready, my brain likes denial of nasty topics. So... what will you use to ice? Do you buy those blue gel packs for hands and feet? Any recommendations?

    Laurie

  • indahood
    indahood Member Posts: 122
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    Hi Deb, welcome in! wishing you all the best. Haven't got much advice since I won't start until Friday but let's keep the chatter up. A friend of mine who has been there told me to keep Aloe Vera water handy. I don't even know what that is but I'm going out to buy some today. Such a journey.

    Anyone else having issues with "know it all, documentary watching, armchair oncologists" that feel a need to inform you that chemo doesn't work? I have and have figured out to tell them, ok, wow those sound like bad numbers, your right about that. Comeback when the gamble is with your life and not just hypothetical and we'll have a longer chat then. It worked.

    Laurie

  • stunned
    stunned Member Posts: 2
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    Hi there,

    first time writing, though I've been stalking these boards since being diagnosed early December 2017. A wealth of some great and not so great information, but over all I leave with a feeling of shared experiences and community. win-win. I was diagnosed after a routine mammogram and MRI it was quickly diagnosed as multifocal idc (3 tumors) <1cm. After lumpectomy on the 18th of Jan, path showed 3 separate cancers and a macro metastases to 1 of 3 nodes. So I went from stage I to stage IIa. Chemo scheduled for Feb 8th - 4 doses of Taxotere and Cytoxan - 3 weeks apart. Followed by tamoxifen for ?? years. I'm 49 with 2 boys, ages 10 and 11. Life is good and never dull. :) I am confident in my team and have a wonderful husband who is super supportive and loving. I'm still on the fence with telling certain family members and even friends as I am very private and actually get strength from keeping things close to my chest. So.. I am looking forward to sharing the ups and downs and all the successes about to be showered on us all. I am looking to try the penguin cold caps and am surprised that there isn't a regional board that allows us to share a rental to save on the cost. Curious as to anyone's thoughts on this. I'm still trying to figure out my signature and all the abbreviations - bear with me :)

  • rockcity
    rockcity Member Posts: 155
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    indahood - I’m deciding between ice in small buckets and frozen peas. The infusion center does not provide anything for icing. They claim that no one ices. Guess I’ll be the first. Some gel packs warm quickly. I have read that cryomax brand stays cold longer. They sell it at Walmart.

    Deb - I don’t have any words of wisdom yet as this is so new to me also but we will be here to support each other.

    Stunned- I think your user name applies to all of us. We all are stunned by this. Routine yearly mammogram. The doc originally thought I was stage 0 microcalcifications. Biopsy shows stage 1 idc. Final pathology stage 2 with lymph node involvement. Never saw it coming. I’m no expert on breast cancer although I’m sure learning a lot very quickly. We all are forced to. But we are here for each other. Keep in touch

  • Insideout2
    Insideout2 Member Posts: 108
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    I started my treatment today, not sure f I should be in January or February discussion group. My chemo is six cycles of FAC. Day 1 of the first cycle was 01/30/18. I will finish the first round on Friday. Day 1 , 5-fu, Cytoxan, and Andriamicyn to go via fannie pack day 1-3. Day 4 to finish with 5-fu.

    The nausea has kicked in. The lemon drops help with this. Since this is my first cycle I will go in everyday. Next cycle I will go in on day 1 and 4 only. I am in CST so in less than an hour I am in day 2.

    Sometimes it is not easy to see how strong you are until things happen. When I reflect on my past, I realize I had life experiences that will help me push through.

    I have a port and am happy with this decision. I had cold spray applied before my needle was inserted. Did it help? I believe so, but felt a dull ache for at least 30 minutes. I don't feel it now. On day 4, I am expecting the same dull ache when they remove it.

    Wishing everyone the best. If you have a check list of the things you want to do to prepare for treatment great. If they all get done it's okay. If you are stressing about things you delegated to others, know they will not have that special way of doing like you. They love you enough to try and that is priceless. Plus it just shows how Awesome you are at what you do.

    If they do it better so what, take notes for when you are better, or take it off your to do list. We all have more than enough to focus on.

    Update-

    Day 1 - I did walk for 20 minutes once I got home. The weather was nice and if my SE were going to be terrible I wanted to enjoy a nice walk.

    I didn't feel the nausea again until 5pm and 11pm. I sucked on Lemonhead candies to address this, then ate a couple of wheat peanut butter crackers. This worked. I also ate a big breakfast on day one as instructed. I think that helped me.

    I did drink water and ensure while there in addition to the wheat crackers.

    I also ate two small meals that consisted of rotisserie chicken and baked beans. I wasn't hungry, but remembered I was instructed to eat and small meals every two hours was okay.

  • AMBurt
    AMBurt Member Posts: 72
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    I am going to be part of the Feb group although I still don't know the exact date and type of chemo I will be getting. My surgeon was going to put my port in on the 16th. However my oncologist, who I meet today and really like tons, wants to get things started a week earlier. She would like and hopes I can get my port on the 9th and start chemo the 14th. They had to send my biopsies of for more testing as the HER2 came back a plus 2 which means the can't tell for sure if I am negative or positive. We are hoping it will be positive as the drugs used are kinder to the heart. I can't remember the names but it is three drugs. The reason there is concern for my heart is I have a mild heart mummer because I had rheumatic fever as a child. If I am positive HER2 she says she wants to start my chemo the 14th even if my port is not in. If I am HER2 negative and have to wait until the 16th for my port I will begin chemo on the 21st. I will be kept busy between now and then for sure with tests, blood work and classes, if insurance will pay for it a PET scan, if insurance will not pay for the PET then a bone scan and ct scan, and a echo for my heart, a class for patients starting chemo and them one for my specific chemo combo once I know it. I will also be assigned my chemo nurse and get to meet her or him. They try to keep you with the same nurse for all your treatments they feel it makes the patient more comfortable and you can call your nurse if you have any questions or complications in between infusions. They also have a hotline number for after hours if something goes wrong or you need help. She told me if you wake up at 3AM and are sick and the meds are not working they have a 24 hour pharmacy that will deliver meds any time if you live within 25 miles.

  • rockcity
    rockcity Member Posts: 155
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    hi amburt-welcome to the Feb chemo group. I'm sorry that you are here, but we will be here for you. I am HER2 positive and the MO is putting me on Taxotere, Carboplatin, and Herceptin. The Herceptin is specific to HER2 positive and you will probably need it for a year. I’ve heard most people tolerate the Herceptin pretty well. There is a lot of info to learn in such a short time, but it sounds like you have a great team put together. Use this site. There is a wealth of info and experiences to help you

  • AMBurt
    AMBurt Member Posts: 72
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    If I am her2 positive this is almost the same plan they want for me except that the Herceptin would be for six months then I would have my BMX they want to shrink my largest tumor before surgery. I could not remember early what the three drugs where read your post and bingo the same combo. Hope it is the one I get I am worried about my heart.


  • AMBurt
    AMBurt Member Posts: 72
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    Those who will getting Taxotere ( I might don't know for sure yet ) and want to ice someone on an early thread posted these from amazon https://www.amazon.com/NatraCure-Cold-Therapy-Socks-treatment/dp/B003L4WOKG/ref=sr_1_1_sspa?ie=UTF8&qid=1517452439&sr=8-1-spons&keywords=ice+pack+for+feet&psc=1 they said they stayed cold for that part of the infusion. She also went to walmart and bought a lunch bag that you could put the whole bag in the freezer to keep these and two small bags of peas in for her hands. She was pleased with how well it worked for her. This is my plan if I am put on this drug.

  • Debsmisto
    Debsmisto Member Posts: 106
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    I am feeling more and more anxious, don't have my first chemo until next Thurs the 8 th, I am starting chemo with no port to see how it goes without, so I am happy some of you do have a port so I can see how that goes for you too. Seems like there are a few of us on the same chemo plan so it will be nice to discuss se's etc. Glad you're all here!

  • AMBurt
    AMBurt Member Posts: 72
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    I feel like my life has been hit by a tornado. So much is happening so fast that sometimes I feel like I just need to slow down and catch my breath. This unknown her2 status is upsetting. Having done some more reading my MO must really think it is going to be positive as it is rare to do chemo first before surgery if it is not.


  • Insideout2
    Insideout2 Member Posts: 108
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    Debmisto-Feeling anxious is okay. I started treatment on Tuesday and was anxious too. Ask as many questions of your medical team as needed. I spoke to my nurse the night before to go over my concerns and the call was beneficial for me. On the day of treatment, everything was reviewed again. It helped my MO RM stopped by to follow up on our call the day before.

    AMBurt- I agree between dx, tests, and a treatment plan things move fast. Pace your self. I recommend getting a calendar and notebook with pockets. This will help keep up with what is happening. It will also make it easier to pull out paperwork quickly when you follow up with insurance items.

    I am on day 3. I will get another dose of Andriamicyn today and finish with 5-fu tomorrow. I felt mouth sores this afternoon and received a RX for Magic Mouthwash. The mouthwash is working.

    Does anyone know how long the mouth sores last? Any tips on how to prepare for the week following the first round of chemo?


  • Jlove1821
    Jlove1821 Member Posts: 53
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    Hi, I am going to be starting chemo on the 15th after I found out my oncotype was 24. I'm going to do 4 rounds of taxotere and cytoxan. Does anyone know how long taxotere takes vs cytoxan. Like 2 hours of each , etc? I haven't gotten my teach yet although I did get a few prescriptions called in. I'm a mom to 3 littles( 7,3,1). I'm going to do cold capping through Dana farber. Anyone else being treated there? They just got a machine a month or so ago so feel lucky about that..altho the idea of being freezing doesn't sound awesome to me. I'm thinking of doing the icing of the hands and feet.. I'm hoping we can support each other here and gain more helpful info too. Sending love to all! If anyone is doing my regimen and has any advice that they've heard please let me know! I'm pretty scared of all this!

  • This2shallpass80
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    Hi Ladies! I will be starting chemo Tuesday! Scared to death of the side affects, and I don't want to be sick around my kids. I'm 37 years old, found my lump in mid November and had a bilateral mastectomy January 10th (ER+/PR+ Her2-). It wasn't until after my surgery that I found out the cancer spread to 2 of my lymph nodes...which is why I will now be doing chemo and radiation. I will be doing AC 4× over 8wks and then 12 weeks of Taxol. As soon as my onoc. Told me how much chemo I was having and that my hair will fall out, I shaved my head...I couldn't imagine taking a shower and having a clump of hair in my hand. I hope you all fare well with your treatment and please keep us all informed so we can go through this together ❤

  • Annieg67
    Annieg67 Member Posts: 3
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    hi all! I’m a newbie... starting TC protocol on February 6th.

    Stage 1A, triple negative breast cancer, but tested negative for gene mutations.

    To prepare for losing my hair I got my hair cut to a pixie style earlier this week and I bought some caps from amazon. Got my port in this week and opted NOT to get the anaesthesia... not one of my brightest decisions!

    Anyhow... good luck to all of us as we move forward on this journey!


  • rockcity
    rockcity Member Posts: 155
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    hijlov21-Taxotere infusions are 1 hour. Nail problems and neuropathy with taxotere can occur so you may want to consider icing your hands and feet. That said my first infusion is Tuesday so I can't tell you how miserable it is to ice yet. I am going with penguin cold caps . That's great that Dana Farber has a machine. That has to make the process so much easier. My husband has the job of capping for me. He's going to be exhausted after 7 hours of nonstop capping. I don't know anything about Cytoxan. Many women use it and can help with questions.


    This2shallpas80- I will be starting the same day as you. I feel the same way about potential side effects. I don't handle feeling sick very well and can't imagine putting things into myself to intentionally bring on those side effects. I had a lumpectomy a few weeks ago and I also found 2 sentinel nodes positive. So my radiation will be longer and now include my underarm. It’s gonna be a busy year. I get it with the hair. I was planning to buzz cut it myself but then decided to cold cap. If too much falls out, I still might buzz the hair off. My hair already is doing the perimenopause shedding and this might be too much to take. Just a few more days and we can get started on getting this over with.

  • rockcity
    rockcity Member Posts: 155
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    Hi Annieg67-This2shallpass80 and I are also starting Feb6. Glad you had no genetic mutations. I also tested negative for mutations. I was so relieved to not have passed that’s down to my two teenage daughters. Being a teenager is stressful enough. No anaesthesia! You are tough!

  • CBOK
    CBOK Member Posts: 68
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    I cut off all my hair and dyed it blonde and purple. I haven't had hair this short since I was about 2yrs old!

    image

  • AMBurt
    AMBurt Member Posts: 72
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    My surgeon had an opening on the 9th so I will be getting my port on the 9th and starting chemo on the 14th. Still don't know the exact chemo I am going to go ahead and order the socks to ice my feet just in case. If I don't need them I can send them back but want to know I have them just in case.

  • AMBurt
    AMBurt Member Posts: 72
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    CBOK what fun colors! You look fantastic! I wear my hair short anyway, but may do a pink for awhile it would sure tickle my grand daughters.