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November 2019 Chemo Club

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I couldn’t find a November Club started yet, so here goes my very first post (after lurking and absorbing info like a sponge for a month)!

I start AC-T on 11/21. Have a bunch of pre-tests this and next week: PET, DEXA, cardiology, my neurologist. I get my port Fr. 11/15. Have yet to go for that consult, but apparently my surgeon is a master at hidden scar technique so my port will likely be in my armpit. I’m a mix of terrified...and trying to push it out of my head until the day I have to sit in a chemo recliner.

Give a holla if you’re jumping into the fires of hell with me this month!



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Comments

  • RadQueen
    RadQueen Member Posts: 310
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    Hi Lisa, I am part of the Oct. group, but my treatments will carry over till Feb. If no one shows up feel free to come read some of the post from Oct. I got a lot of good information from other warriors who were going trough this.

    Just remember you are brave, strong and beautiful. You've got this, If you need to vent or just express your thoughts we are here.

    Keep the faith


  • WC3
    WC3 Member Posts: 658
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    LisaKPisa:

    I finished chemotherapy last year. While everyone responds a little differently to it, and I had TCHP instead of AC, it wasn't as bad or as scary as I thought it would be. It was just a real bummer trying to eat things.

  • Charliebug
    Charliebug Member Posts: 96
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    I am going to "chemo class" next Wednesday the 13th to get the lowdown on how chemo will go and how to administer my injections to increase my white blood cell count. My first round of chemo is November 18th. I am getting 8 rounds of chemo followed by 5 weeks of radiation. I expect to be feeling human again around May but hopefully I am one of those lucky people who breeze through everything (ha!). I'm here with you :)


    (This is my first post- I just joined yesterday)

  • moderators
    moderators Posts: 8,069
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    Dear Charliebug,

    Welcome to you. We are sorry for your diagnosis and treatment but so glad that you reached out and joined our community. We hope that you find support and helpful information here from our members. Please let us know if there is anything we can do to assist you with finding your way around, getting connected and staying active here.

    The Mods

  • lisakpisa
    lisakpisa Member Posts: 12
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    RadQueen - I have read through quite a bit of your October group’s posts (nod to the lurking I mentioned before) and have taken tons of info from it! My heart has been with you through all the ups and downs.

    WC3 - Thank you for being a voice of hope that maybe it won’t be as bad as I’m imagining it will! Not wanting to eat will be unusual for me. I think about food all darn day!

    Charliebug - Wow! Our treatment plan is nearly the same! You’ll just be a few days ahead of me. I’ll also have 8 rounds. Are yours spaced two weeks apart? Mine are, and from what I’ve read that may mean I’m getting dose dense. Not sure though. It’s on my list of questions. I’ll also be doing radiation right after chemo, then tamoxife. Are you getting a port?

  • butterfly620
    butterfly620 Member Posts: 8
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    Hello! I got my port today and I start chemo tomorrow. I'll have 4 rounds of DD-A/C for 8 weeks, then 12 weeks of weekly Taxol.

  • Charliebug
    Charliebug Member Posts: 96
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    Hi LisaKPisa!

    Yes, my rounds will also be spaced 2 weeks apart and I do believe it is dose dense as I am triple negative so they are attacking this hard. I don't know if I will be getting a port or not just yet. My veins have always been good but we shall see if they hold up during treatment. I will keep you updated for sure. It's so nice to find a place to talk about my experience with others going through the same or similar things.



  • Charliebug
    Charliebug Member Posts: 96
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    Thank you for the lovely welcome

    Happy

  • WC3
    WC3 Member Posts: 658
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    LisaKPisa:

    Oh I wanted to eat. It just didn't feel/taste good when I did.

  • Dixie02
    Dixie02 Member Posts: 74
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    I start on Monday. 4 rounds, three weeks apart. I'm also triple negative. Good luck, ladies.

  • lisakpisa
    lisakpisa Member Posts: 12
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    Butterfly - How did your first infusion go?

    Welcome, Dixie! Hope Monday is smooth sailing

    Charlie - I agree about having this place to talk real talk! I have a fabulous support system, but I think I overwhelm them sometimes with my technical talk of what type of BC I have or what chemo drugs I’m going to get. Like them, just three months ago I didn’t know there were different kinds of either of those things.

  • Dixie02
    Dixie02 Member Posts: 74
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    This is kind of a dumb question because I obviously have to check with my doctor, but I'll ask it just for the sake of discussion. I picked up three prescriptions from the pharmacy today. One is a steroid that I'm meant to take the day before, the day of, and the day after chemo. The other two are for nausea, take one every six hours, and take the other one every eight hours. The pharmacist made a point to give me a consultation, and told me that the two drugs together could cause a side effect of tremors in my arms and legs. Now, I'm wondering if I'm even meant to take both in one day. Why did he write both prescriptions? When he told me that he was sending them in, I didn't ask questions because I figured it would be self explanatory. Anyway, I'm going to call in the morning. I start chemo on Monday and I just want to be prepared. And, speaking of being prepared, now I'm wondering if I should take the nausea meds before I go in to chemo, or is that something I start taking after. It's funny, I was just there today for the chemo class, of course NOW I've got questions.

  • Karen2019
    Karen2019 Member Posts: 58
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    Hi ladies! Sign me up for the Club! I start my four rounds of TC on 11/20. I had my port put in this past Monday. I am somewhat worried about my first infusion as there is no formal "chemo class" at my hospital and my MO's office doesn't really give much advice about how to prepare unless you ask specific questions. Almost everything I know about preparation I learned on this forum, and I am so grateful to have found it. I am glad to have this "club" to share with and learn from

    To everyone who has already started their treatment this month, I am thinking of you! Please let us know how it is going.



  • Eigna
    Eigna Member Posts: 256
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    i will probably be following you every step of the way, just to learn what chemo is all about. Today I had my post op appointment and I found out I will be doing chemo 😭. Haven’t met my oncologist yet but it looks like it would be toearly December or late November.

  • MegOh
    MegOh Member Posts: 10
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    Hi Karen,

    Just curious if you did an oncotype test? It looks like you qualify to take one?

    Meg 😊

  • aterry
    aterry Member Posts: 142
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    I'm sending positive thoughts to you November ladies. Being part of a forum kept me sane and I learned so much I started AC-T 3 years ago for TNBC. That was followed by a lumpectomy and then radiation. The experience was more manageable that I thought it would be. There were side effects and I have some lingering issues--chemo brain. But in general my treatment center (Dubin Breast Center/Mt Sinai in NYC) was able to guide me along. There is every reason to believe that you will do well. When you are through treatment and in full recovery mode it may go slowly but it will be steady. I have not yet reached a plateau. Even this far out my health continues to improve.

  • butterfly620
    butterfly620 Member Posts: 8
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    Hi, Lisa, my first infusion went well! I had my port procedure Thursday morning and the medication they gave me for that kicked my butt! I slept and slept! It also made me feel sort of hungover Friday morning, so I actually felt better after my infusion, believe it or not! The only thing I noticed yesterday were a few bouts of nausea. I decided to take one of the pills they prescribed (Prochlorperazine) and felt so much better! That's been the only time I've needed that. Since I'm having A/C, I had the Neulasta on-body injector, and that started around 4:15 and finished at 5. I've been taking Claritin to hopefully stay ahead of the bone pain.

    Dixie02: I'm glad you are going to call your doctor regarding your questions. It can be so confusing when they give us a ton of new meds with varying directions. It also seems different places do things different ways. I was given a steroid with my infusion, and sent home with directions to take 2 steroid pills for the first three mornings after. I was given 2 types of nausea meds, one (Zofran) I shouldn't need for several days since I was given a long lasting one (5-7 days) with my infusion. I did take one of the other yesterday though (Prochlorperazine).

    I see a couple of you (Charliebug (Hi!) & Lisa) are also doing dose-dense A/C...Anyone else doing Taxol?

  • Dixie02
    Dixie02 Member Posts: 74
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    Butterfly: Those are the two nausea meds that I have, plus a home/oral steroid (dexamethasone). The infusion premeds are Aloxi and Decadron. It looks like Aloxi lasts for days, so I guess I'll take my prescription meds once I feel like I need it. I've just read so many people advising to take the nausea meds religiously, even if you don't feel sick, set your alarm in case you're sleeping, stay on top of it because if it gets ahead of you can't get past it... It made me afraid of the nausea side effect the most. Nobody ever mentioned when they started taking them. And, for that matter, when do you stop? My cycles are every 3 weeks, do you take the pills the entire time? How do you know the nausea went away if you're always on the pills? LOL

    Also, I had my port procedure on Wednesday. I felt the same as you after. How was your experience with the port injection for chemo so soon after surgery?

  • butterfly620
    butterfly620 Member Posts: 8
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    I feel like staying on top of the constipation meds are more important to me, lol! But that comes along with A/C...I don't like to take a bunch of medications I don't need, but I may feel differently in a few days. So far, I've only needed the nausea meds once.

    Those are the same steroids I am prescribed too. I haven't felt any side effects from those specifically...maybe gave me a bit more of an appetite than I normally would have? But I see that as a good thing, especially right now.

    They left my port accessed since I had my first infusion the following day. It was a little sore during, but not bad at all. I feel so much better without the needle and tubing!

  • OwlBeLovingYou
    OwlBeLovingYou Member Posts: 3
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    Hi Ladies,

    I am recently diagnosed and am starting chemo on Wednesday 11/13. I am having 6 rounds of TCHP followed by a probable lumpectomy. Got my port last week. Was feeling like it was all going to be okay, but now am feeling much more nervous about it as it draws closer. How is everyone else feeling?



  • Dixie02
    Dixie02 Member Posts: 74
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    Hey, Owl. I'm nervous about how my body will handle the meds. I love the internet, but people only ask questions, or vent, about side effects when they're having a hard time with them. I keep telling myself that there are just as many people, if not more, who are handling it as well as they can, and didn't feel the need to ask/vent. I also want to be prepared. I don't want to find out later on in the week that I could have been doing something simple to prevent something harsh. So, like I said, I'm only worried about side effects right now.

    I am looking forward to getting the process started. I've been eager for this, so that's good. I wish you the best. I'll check in on here with my progress.

  • Dixie02
    Dixie02 Member Posts: 74
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    Did my first round today. I feel better than expected, and the day was easy. So far so good. I'll keep updating as the week progresses, I'm sure I'll experience something. (Editing to mention) The steroids are doing a number on my sleep. I am experiencing fatigue due to the fact that I was up all night, and had an early appointment this morning. But, I don't know if I'll be able to sleep. I was an idiot and thought that taking them at 9am, and 9pm was a good idea. Plus, I got it in my premeds today. With the second cycle, I think I'll set my alarm to take them at 5am, and than 5pm at night. That seems like a better timeframe for, hopefully, sleeping at night.

    Butterfly, how are you feeling? I'm thinking about you.

  • butterfly620
    butterfly620 Member Posts: 8
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    Dixie02,

    I'm so happy that you are feeling well! 😊 I felt better than expected also. My instructions are to take the pill steroids the first three mornings after the infusions, so I haven't had too much trouble sleeping. Yesterday was the last of the extra steroid pills, so I'm hoping I'll improve even more (Dare I say I'm past the worst??).

    I ended up needing to take two of the Prochlorperazine total, so the nausea wasn't that bad with this round. I've tried really being in tune with my body, eating when I'm hungry and drinking when I'm thirsty (and still drinking even if I'm not!). I have drank a ton, and that has probably helped. My infusion center said to drink whatever I wanted, so I've had (mostly) water, powerade, lemonade, and sparkling water.

    How far apart are your infusions? Mine start out every two weeks for the first 4 rounds.

    Owl,

    How are you holding up? I see you start tomorrow...I am thinking about you!👊💪



  • mac5
    mac5 Member Posts: 85
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    Hello All,

    Had my first round of CMFon November 7. Next Round on November 14.

    A question for all...I'm on Medicare and Part B covers part of medications. MO prescribed Elma Cream to numb the port area. Pharmacy tells me Medicare has denied coverage and the cash price is $4,900 for a 90 day supply.

    $5,000 for three tubes of anesthetic cream! I asked her if she was out of her mind!!! Obviously I refused to pay that but has anyone else had this experience

  • RadQueen
    RadQueen Member Posts: 310
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    Hi Dixie I start taking the zo ad pregn. as soon as I get home from Chemo and take them every 6 hours for the first 3 days. I stop on day 4 just to see how I feel. So far haven't needed to take them for more than 3 days. I luckily have had no bad SE yet, but am only on AC #3 one more to go than 12 weeks of Taxol. Not looking forward to that. Yuck every week...

    Keep the faith and stay strong

  • RadQueen
    RadQueen Member Posts: 310
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    Mac5 you need to ask the pharmacy why Medicare denied you, your MD might have to appeal to them directly. Or you can call them.

    You can buy a OTC brand from Amazon it's a 5% lidocaine cream called

    Ebanel 5% Lidocaine Topical Numbing Cream

    there are also many other brands used mostly for tattoos but do.t see why it would hurt for a port, its about 20.00 a jar or tube but that's still a lot less than 5000.00.

    Since lidocaine is the main ingredient in ELMA cream it might work just as well the lidocaine in the ELMA is only 2.5% with another ingredient prilocaine also 2.5%.

    Dont know if this will help but if it does

    Stay strong


  • Dixie02
    Dixie02 Member Posts: 74
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    Rad, I'm in Louisiana too. The New Orleans area.

    Today, the day after my first round of chemo, went well. I'd get a flash of a very mild headache, or stomach upset, but it passed almost as soon as I felt it. I don't normally get headaches or nausea, so I'm sure it was the chemo, which is why I'm even bringing it up, but it was very mild. I might take one of the prescribed nausea medications before I go to sleep tonight, just because people have me paranoid about keeping on top of it. I'm wearing the Neulasta patch, and it's set to release the medication around 8pm tonight. That's the one that causes flu like aches. I've been taking Clartin every night since Saturday, when I bought it, to help with those side effects. I'll update tomorrow.

    I found a lady on YouTube who said that her nurse recommended coconut water to help with maintaining white blood cells. In her situation, she was told that her white blood cells were too low and had to postpone the chemo. That was a Friday, she drank the coconut water over the weekend, and was cleared for chemo that Monday. I've never been a big fan of the flavor of coconut water, but I figure one a day couldn't hurt. If anything it's good for hydration and potassium. I'm not a dramatic person, but this is uncharted territory for me, and all the warnings about not getting sick, or infections, is another thing that grabbed my attention. I'll see how it effects my white blood cells.

  • OwlBeLovingYou
    OwlBeLovingYou Member Posts: 3
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    Hi everyone. Just got back from my first chemo appointment. I feel ok right now. It was a long day and I feel pretty tired. I didn't know that they would give me the neulesta injector patch and haven't really been taking any Claritan for the bone pain yet. Going to pick some up tonight. Is it too late to help? I am possibly a little constipated already? Not sure if it's too early for this really to be the case or if it's all in my head.

    I completely forgot to put on the lidocaine cream this time and they accessed the port without my being numb at all and it wasn't bad at all. It hurt less than a normal IV stick, I think.

    Butterfly, thanks for the reminder about drinking fluids and how it helps. Been working on reminding myself that it will really help. Dixie's, the coconut water is a good tip an I will keep it in mind. Thanks for sharing where you are at.

  • Charliebug
    Charliebug Member Posts: 96
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    Went to chemo class today and I could only manage to stay for the first 10 minutes. The instructor handed out our information packages and started to talk about how cancer cells differentiate from normal cells. I was the lone one with 2 other couples in the class. There were 2 rows with 4 seats and the couples sat in those so I was by myself in the front. In school, I would have had no problem. I was outgoing and social and somewhat of a teacher's pet. In this case, it raised my anxiety level to the point I thought I was going to have a panic attack. The room was small and stuffy and I felt like every breath I took had to be measured so nobody would notice I was having trouble breathing and concentrating. I know this drill. If I can't get my mind off my level of anxiety then I can't concentrate on anything else and I need to get the heck out- which I did. Panic attacks are very hard for me to stop once they get started unless I am able to get to a place I can be alone and do some breathing exercises and self soothe.

    Luckily this was a general information session and not specific to me and I will get a much more thorough information session on Monday when I go for my first treatment. One of the instructors called me later on and was very understanding and offered me a private room for my first chemo treatment- I gratefully accepted.

    I have learned something about myself through this. I prefer to get the information I need through certain medias and a classroom environment is not one of the ones I prefer. I like to read and absorb and go back and read again. When it comes to my BC, I would prefer to get information a little at a time and not all at once. It is a lot to take in and there are so many tests and scans and then results and interpretations and it goes on seemingly forever. In my case, the cancer is basically gone and it just needs to stay gone. I can't imagine what it would be like if I had to deal with palliative care. I want to scream "shut up and give me the chemo and let me watch Netflix and go away!!".

    No more walking out of anything now though. This train is going straight ahead and I will be armed with Ativan and, hopefully, a quiet private space going forward.





  • Dixie02
    Dixie02 Member Posts: 74
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    Owl, I didn't put anything on my port area to prep it for the injection, and it was fine too. I wonder if it'll get itchy as it heals?

    Day 3 for me, and I felt fatigued. Not sleepy, but like I just needed to sit down more often. Must be the lack of steroids. I still feel a slight stomach upset, and a headache, but it's not significant. I keep expecting something bigger to be happen.

    Charlie, my first round was in a private room. It was nice.