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Chemo Starting September 2018

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  • fairchild
    fairchild Member Posts: 138
    edited September 2018
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    Oh, I should have added-- They gave me Zofran and Phenergen for nausea. I've taken 3 of the zofran since chemo and 1 phenergen today. I gather the phenergan is stronger? The nurse didn't write down much in the way of instructions, so it's kind of hard to know how to use it.

  • beeline
    beeline Member Posts: 193
    edited September 2018
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    Fairchild, please call your onc! It’s not bothering him, it’s his job! I haven’t started yet, but mine told me they have lots of different options to treat side effects so please do call and get looked after! And let us know how you get on

  • PNWCyclist
    PNWCyclist Member Posts: 4
    edited September 2018
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    hello,

    I was diagnosed 9/5/18 with Stage IIIC IDC, my primary tumor is 8cm and a few others are 4cm and 5 cm, with at least two lymph nodes involved. Met oncologist yesterday and getting port placed Monday 9/17 and start chemo Tuesday 9/18. He said we have no time to lose as my tumors are “aggressive and high grade” which freaks me out. I do not know all of the abbreviations but the first chemo drug I am getting is Adriamycin or “Red Devil” so I have heard it called? Is anyone else on this? I am intersted in hearing about your experience.

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    @fairchild, I agree with beeline. You need to call your onc now!! You are not bothering him! I was told to call if I have any side effects that’s making me sick. She also said to me that they are there to make sure I feel comfortable. Please call your doctor today.

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    So I was up til 5am.. thank you steroids! Also had a bit of nausea last night (happened last week too so i think that my cycle is "a bit of nausea on the first night" took a zofran again. thankfuly my digestion seems to manage it.

    A little known side effect of chemo is apparently spending a ton of money on amazon. I spent the 4am hour buying scrub caps.


  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    OMG btw. My surgeon called me today (i had surgery in july) to see how i was feeling and wish me a happy new year.

    I love having good attentive doctors.

  • fairchild
    fairchild Member Posts: 138
    edited September 2018
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    pcranky me, too- about the amazon spending spree. I need to control myself.

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    Fairchild - please let us know you called your oncologist. That's what they are there for and if you are vomiting, they need to know and treat it. This is hard enough without worrying about imposing on our doctors.

    pcranky - that's great about your surgeon. I really like mine - she's a straight shooter but kind.

    I buzzed my hair down from a pixie to a buzz cut last night. When I first found out I had to have chemo, I cut it just above my shoulders, and then went to the pixie the day after the first round. Just makes me feel better to approach it gradually. I'm on Day 13 and I know it's any day now. I have started wearing caps to work, and am going to try my hand at wrapping a scarf tomorrow.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited September 2018
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    Tigerlily, I started losing single strands of hair after 3 weeks just after my first infusion, and shedding is normal, please remember, many patients completely loose at that time all hair if No. cold capping. After second infusion I developed Matts on both sides, one side - it’s brushed completely , on other side stil have some, and under those Matts I have bald spots ...👀👀👀, and my ponytail is thinner now.

    How is cap firs you!? I think small it is somehow a. It big but not that much, I have to make my chin straps very tight to have this tight feeling ...

    Glad you step daughter knows now, just reassure her - you will be fine!

    My teens are doing Relay for life cancer fundraiser, so they know .

    Fairchild , please continue use anti nausea!!! Feel better please!!!❤️❤️

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    It has been a week and a day since my first infusion and my scalp has already started to hurt.

    everyone tells me its really soon but i feel like its getting ready to go.

    I'm buzzing it tomorrow down to super short.

  • fairchild
    fairchild Member Posts: 138
    edited September 2018
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    So I called the nurse. Was relieved that she listened to me in spite of my horrid crying. She called in phenergan that I can apply topically and some stuff for mouth sores. My BG is very high for me-- 242 fasting-- but she didn't know what to do about that. Said to talk to doctor tomorrow. She thinks it's the pain that's making me cry, which could be I guess. Glad I'm seeing the doctor tomorrow. Hope all you guys are having fewer problems with this!

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    @faitchild, I am so glad that you talked to the nurse and going to see your doctor tomorrow. I hope he/she will be able to give you more answer.

    So I am watching Master Chef and enjoying a glass of red wine. Day 10 for me, I finally feel good enough to have a glass of wine. I keep on telling myself that I will just have a glass tonight then stop until after the second infusion... but I can’t guarantee that I will be able to follow through.. Anyone knows anything about the right protocol on that?

  • kk2018
    kk2018 Member Posts: 54
    edited September 2018
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    Another day down. I napped twice and felt a bit queasy this morning but managed to eat my meals and get through the day unscathed. Hoping tomorrow is similar. 🤞🏻

    I was told no booze. The irony that I can get a medical card for weed when all I really want is a nice glass or three of wine has not escaped me. 😉

  • heatherpsalm34-4
    heatherpsalm34-4 Member Posts: 50
    edited September 2018
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    Thanks for your reply,Wanderweg! I’m hoping I can talk them into giving me a little extra sedation

  • heatherpsalm34-4
    heatherpsalm34-4 Member Posts: 50
    edited September 2018
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    I start “The Red Devil" tomorrow! So thankful for all of you! It's great to communicate with others on this journey.

    Question: What is the REAL deal with sugar? Does it really feed cancer? Do I need to cut it out ENTIRELY

  • beeline
    beeline Member Posts: 193
    edited September 2018
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    Fairchild, so glad you called and the nurse was helpful!

    JNKK - my onc said I can have 10 glasses of wine a week! He even wrote it in my chart according the nurse. I imagine I'd have to be doing pretty well to get through that. KK2018 - maybe I'm allowed so much wine because medical marijuana isn't legal here Happy

  • M-and-M37
    M-and-M37 Member Posts: 43
    edited September 2018
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    thanks for starting this. I don't usually go in for this kind of thing but my how things have changed in the last couple months. Three weeks out of my UMX starting chemo on the 20th.-AC- I am very frightened. They found some serious heart issues on my pet scan - i've always been pretty healthy And to be honest I still feel pretty Good.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited September 2018
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    heather psalm, here is the topic written by Oncologist- radiologist , please read #2 about sugars.

    I slashed it , but it was hard for me As a baker who loves to bake , but occasionally I d love to eat sometime not very sweet fruit pie like lemon blueberry pie or almond apple pie.

    Modesty and moderation is the Answer! Bake something and eat the whole by a piece rather than eat in one day !

    Good luck with a treatment and less SE , Heather

    https://s3-us-west-1.amazonaws.com/lisaschwartzmd.com/7+Myths+Quiz+answers.pdf

  • 70charger
    70charger Member Posts: 591
    edited September 2018
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    Hi Ladies! I'm from the Sept 2013 chemo group, yup 5 yrs out.. Sorry we are meeting like this. You are well on your way of muddling through this bumpy road & doing a really good job. I will continue to pop in to see if I can be of any assistance. For those of you having a queasy tummy, try keeping a small amount of something, anything in your tummy at all times like just a couple of tablespoons of jello or a couple of crackers. I found keeping something in the tummy quite helpful for that. For those of you who are soon to lose your hair, you will probably experience a runny, drippy nose. You are not coming down with a cold, you are losing your nose hair. Have Kleenex on hand. You may also experience hearing problems. The tiny hairs in your ear canal act as an escalator to move the wax out. When you lose them you can end up with a wax build up blocking your eardrum. You can have your Dr flush the wax out with water. Hair loss, I only lost half of one eyebrow, everyone is different. Take it day by day. Nail loss for me I lost my toenails 6 months after finishing my chemo. Nothing gross or painfull they just popped off with a very thin new nail underneath. It is mostly the unknown that is the scariest. This is very doable, I figured if little kids can do it so can I. Keep up the good work ladies, There is a lot of support here, you are never alone.

  • moderators
    moderators Posts: 7,918
    edited September 2018
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    Welcome M-and-M37, we are sorry you have had to join our community, but glad you found us. We understand how frightening it can all feel. You're not alone. As for the heart issues, have they cleared you then for starting chemotherapy?


  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018
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    Thanks pcranky....they are talking to me on Tuesday, my next TC day, about tapering the steroids and about how to handle the anti-nausea with the side effects I had. I imagine I'll be having that conversation with them. I keep saying that one of the hardest things about this situation is all the drugs. I'd never taken any of these drugs before so it's hard to know if the side effects are the chemo, the drugs, the combo, which one, etc. 

    Also, I live in a state with legal pot. I have never used it but was curious about whether I should consider it and/or CBD oil. I know a lot of people using CBD oil (which is more widely legal across states) instead of Advil and other pain killers, for a variety of reasons. I joined a great group on FaceBook called "Fighting Breast Cancer with Cannabis". I quickly learned that THC (the active ingredient) is not good for estrogen based cancers, there is research and studies that it can make it worse and grow tumors. There are also contradictions with tamoxifen and I believe other drugs. It was pretty eye opening, especially living in a state where legal recreational shops are about to open in addition to medical. Everyone here is in this "pot cures" all mode and it isn't true. So just putting that out there, it's obvious a personal choice and something that will vary for everyone because cancers are different and of course due to work, legal, and other issues. I believe there is now a group on this site too about cannabis. 

    Welcome Soozy, 70charger, and Fairchild - and I echo the call to call the doctors/nurses. It has been made really clear to me to call, when it doubt call, and don't worry about calling. We should not have to suffer more than we need to. 

  • M-and-M37
    M-and-M37 Member Posts: 43
    edited September 2018
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    Yes.I spoke with the a cardiac surgeon Tuesday. He suggested that I begin chemo and then have the valve replaced and the aneurysm before radiation as it could damage my heart further. Not sure my oncologist agrees. I am planning on getting a second opinion at one of the teaching hospitals -Loyola. In any case I’m just gonna break it down and take it one piece at a time.

    To me, the most difficult thing, is that I have never dealt with any kind of serious illness when it comes to myself. I’m a social worker and have been the primary caregiver for my 90-year-old mother for 10+ years. This is much different. And it’s hard to shift focus to myself . I’m also finding that some of the people around me, family, friends, coworkers, although they pay lip service to accommodations for the cancer, have the same expectations of me as before. I was super easy going and would always bend over backwards for most anyone. I’m now having expectations of them.


  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    @70charger, thank you for dropping in. I love to hear and see successful stories. It gives me hope that it could be me too. And you are absolutely right, if little kids can do it, so can I.

    @tigerlily, I live in Texas where marijuana is not legal. But I also read about CBD oil just out of curiosity. From my understand is that it is not good for estrogen positive patients (like you pointed out) and something about the acidity going against chemo regimen. I asked my pharmacist briefly about it, she said it hasn’t been approved and just like grape fruits with full of acidity, that I should stay away from it.

  • piksie
    piksie Member Posts: 132
    edited September 2018
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    Greetings, Worriors. I had my first infusion of AC yesterday. It went very well with no surprises. Blood work, met with MO, then off to the infusion room. I have to say, I love the port. This time, I got a local anesthetic before the stick, but picked up a prescription for the topical cream going forward. The nurse explained everything as it was happening. I received a couple of additional meds before A and C, but other than the anti-nausea, I don't remember the details. (whoops) The Red Devil definitely is red. My first to potty trips were reddish orange, but that's gone now. I had a foggy brain and headache last night, but I think that was the Lyrica I'm taking for nerve pain. I have to figure that one out, because I can't live and work like that. I had the same pain 2.5 years ago and used Gabapentin, but suffered through the side effects. This time we're trying an alternative with fingers crossed, but doesn't look promising. Or maybe it was a combo and I need to be more optimistic... :) I got a 20 minute leg massage toward the end. They're in the process of bringing on an acupuncturist so hopefully next time, that will be on the menu.

    A friend gave me CBD cookies as an option for the nerve pain, so I tried it Mon and Tues. Not sure if there is an effect but I hadn't heard of the THC effect on ER+ cancer, so I'll have to research. But I have to say, I went about 24 hours without night sweats or hot flashes after Monday's night time dose of CBD. That was awesome!!! Although I don't know if there is a direct connection.

    My white blood cells and red blood cells were at the very bottom of normal going into this, so that kinda sucks. I really hope Neulesta does it's job. I have kids and cats, and neither are clean creatures. Although, I have tons of friends lined up to keep the cat stuff clean. The boys are on task too, but of course, they suck at it.

    I got some conflicting info re pain management. MO says Ibuprofen, chemo nurse says Tylenol. Anyone have a strong preference for one or the other?

    I'm really happy to have finally begun this process. There is still cancer in my Level III lymph nodes (based on 18/18 in Level I and Level II). I don't know if a Level III dissection will be possible, but I'll certainly ask after chemo and radiation is complete. All the scans prior to surgery didn't detect the ugliness, so I'm not going to rely on them after treatment. Ugh!!!

    Next step is hair modeling today, then shaved by the boys in about a week and a half. Let's get this party started!

    Stay strong, ladies! xoxo

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    @piksie, I was told by all of the nurses (infusion room or my doctor's nurses) and my doctor that I should take Tylenol and Tylenol only.

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    @70charger first of all, let me just say, if you area named for the car, that was a beautiful car. Secondly, thank you for stopping in and giving us hope.

    @Tigerlilly - I hope you can get the steroids down, they are a PITA to be on, even when they keep the side effects at bay.

    I had not heard that THC was bad for ER+ cancer but now that i've heard it, my little self blame voice kicked in and wondered if the excessive consumption of said chemical in my youth could be contributing to my current issues. Probably no value in going down that road, but its hard not to sometimes.


    On the bright side. I took the plunge and went short today! will keep this until it starts to thin then buzzcut!

    image

  • Faith46
    Faith46 Member Posts: 5
    edited September 2018
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    Thanks, Wanderweg! Great to hear that there have been minimal side effects. Had my first treatment yesterday and receiving my Neulasta dose as I type. I hope my side effects are minimal as well

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    Fairchild - glad you called. Your crying isn't horrid, it's normal!

    Heather - Did you get the port in? Was it conscious sedation or full anesthesia? My understanding is that ALL cells feed on sugar, cancer and noncancer cells alike. But since cancer cells are so fast growing, it makes sense to limit sugars and simple carbs. That's true for good health in general. That said, during chemo I was told the main thing was that I keep my weight up. I'll go back to a healthier diet after I'm done, but right now I eat whatever seems most appealing, including white rice, white pastas and ice cream.

    I was not told not to drink. MY MO didn't address alcohol at all. I'm having a glass of red wine right now. For several days the thought of wine was a little repulsive to me, but I am not worried about a glass of wine or a beer in the evening. This is hard enough without giving up little pleasures!

    So, end of Day 14 and no sign of hair loss. My hair is totally buzzed down to 3/8 inch, but I can't see any of it coming out. Tomorrow, maybe?


  • 70charger
    70charger Member Posts: 591
    edited September 2018
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    pcranky lol I just changed my avatar to my pink car as pink October is soon coming. Here is a pic of my charger, enjoy.

    image

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    @70charger Hah.. I never even saw the pic, was just reacting to the name, but that is a gorgeous car now that i see it (both actually).