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Starting Chemo February 2021

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Comments

  • Robin-S
    Robin-S Member Posts: 3
    edited February 2021

    Hi! I'm jumping in here because I just finished chemo - 4 AC and 4 taxol treatments. I had Stage 1 BC, but a high recurrence score (30), so got to experience the joys of chemo. I'm reaching out for a couple of reasons. I wasn't overjoyed at the idea of peripheral neuropathy so I bought cryotherapy gloves and booties and have yet to feel any pins and needles in my hands and feet. I can't say 100% it was the gear, but it was an easy decision to make to suffer with cold hands and feet for a few hours every two weeks on the off chance it would work. But now that I'm done, I'd like to donate them. I'm in the military, and the military hospital can't accept donations of any kind due to some ridiculous legal rationale. If anyone starting treatment (especially Taxol) would like them, gratis, please message me. I'd much rather pass them on than keep them in my closet. Also, I have a great short, blonde, wavy wig that I've never worn - Raquel Welch, courtesy of the military healthcare. Again, if anyone's interested, please let me know, I can send a picture if desired.

    And for everyone starting your journey, the best of luck! I have to say, although there were definitely hard times (especially the AC and nausea for me), it wasn't "quite" as horrible as I had imagined at the outset. And once I started Taxol, it was like night and day, no nausea, could actually taste food again. Now if only my hair, and eyelashes and eyebrows would grow back :).

    Robin


  • micdpowers
    micdpowers Member Posts: 83
    edited February 2021

    Hello. Like Maddy83f, I am here as someone who just went through what you're now starting and am looking for ways to help/offer advice and tips. I'm coming up on my 1-year diagnosis anniversary (Valentine's Day will forever be a reminder) and my last infusion is next week!

    The day I had my port placed was the day I really started to feel like a patient. Maybe it was the hospital gown. It was emotional and a bit of a reality check. I only felt some lightheadedness during my first chemo infusion and it was from the steroids.

    Some positive things I experienced that I hope you will too, or that you can look forward to.

    • I was lucky in regards to not having any significant nausea, but I did take the meds like clockwork for 2 days after infusions, regardless of whether I felt any nausea. Set a reminder system on your phone and take them.
    • I stayed very functional throughout chemo. Only had one (4th one) that knocked me down for a day. I was tired for sure - but prior to starting I had visions of myself laying sick on the couch for days at a time with my kids running wild and unattended, and that was not the case. :)
    • I felt only minor aches after the Neulasta, never took anything for it and was fine.
    • Hair. If you lose your hair, it will most likely start growing back by July/August. Get yourself a big floppy sunhat for summer. Sunhat plus sunglasses and I felt glamorous instead of bald. Everyone in the "starting chemo Feb 2020" group is now talking about their funky short hair which sticks straight up. Mine included. But winter is a good time for hats. My new hair is super-soft and I'm looking at this "clean slate" of hair as an opportunity to be better to it in regards to chemicals, quality products. If you were thinking of just letting your grey grow out naturally - here's your chance!

    My tips on side effects I wish someone had told me

    • the absolute worst side effect for me was constipation. It happened a few days after each infusion. Not so bad with the first, but very very bad after 2nd and 3rd. Like, real bad. So I started a regimen of water, stool softeners, Miralax, Colace before/after infusion days and it helped tremendously. I also had my Dr. dial back my infusion of Zofran (anti-nausea).
    • I have always been prone to canker sores and sure enough, I got about 15 after my first infusion, despite the special mouthwashes, etc. If you're prone to canker sores too, try sucking on ice during the chemo infusions. I was on TCHP and I sucked on ice just during the TC and it helped sooooo much. Even just ice water seemed to help when my teeth got tired of the ice.
    • I got a prescription for Ambien. I don't take it often but it's a nice option for when I just want to go to bed and know I'll fall asleep and not have my mind race. I also find I wake up easier the next morning.

    A year from where you are... I still tear up really easily but I don't go to the "dark place" like I did the first month or so. The first months were scary and full of so many questions, decisions, and anxiety. You'll make it through too.

    Oh... audiobooks... I got hooked on them with all the driving, sitting, waiting, etc. Great mental distration too.

  • pdcinti
    pdcinti Member Posts: 7
    edited February 2021

    HI everyone!

    I had my first infusion on Monday and so far, so good. I barely noticed the port being accessed (I also used the lidocaine cream before I got to the center - it really works!), and honestly, it went faster than I thought it would. I had ice packs on my feet and rest my hands on some during my Taxotere - and chewed/sucked on ice. I have been taking steroids yesterday and today and am keeping up with my nausea meds - also not had much nausea, but can tell when my stomach is completely empty (first thing in the morning, particularly), it causes a little bit of a nauseous feeling. But a couple of bites of something helps! Hopefully the next few days coming off the steroid go as smoothly! Also, I invested in a huge gallon sized water bottle with a straw to help me make sure I'm getting a good amount of water in, to help flush things out.

    I do have a slight bit of flushing on my face and chest - most likely from the steroid. but that's the only physical sign of the chemo!

    I am also goign without the cold cap. My sweet aunt is a barber and has desperately wanted to help, so I am going to have her come in the next week or so and shave my head. I have a few wigs - one fun pink one from thepinkwigproject.com I am guessing I will be using more hats and scarves wrapped - and going bald, but kinda fun to play with hair styles through wigs.

    For those getting their ports in, I hope it's all going smoothly! For me, it was worth it to just avoid the arm or hand stick - I'm an awful stick!!

  • mslo100
    mslo100 Member Posts: 6
    edited February 2021

    I got my port Feb 3. Starting chemo Feb 8. TCH+P every 3 weeks for 6 treatments. I am trying to be prepared so there are no surprises.

    Which of the drugs I'll be given can cause neuropathy? I want to ice my hands and feet during these drugs.

    Also, did most experience diahrrhea or constipation? What about nause? How canI stay ahead of these side effects.


    I appreciate your input and advice!

  • micdpowers
    micdpowers Member Posts: 83
    edited February 2021

    mslo100 - I did TCHP too. I believe it is the T&C that cause the most side effects, so I did ice in my mouth and held some ice packs on hands/feet during those two and for about 5 min before and 15 after them. I started icing my hands/feet at my 3rd infusion as it was at that point I had started to feel some tenderness (like worn skin) on my palms and soles. It helped... maybe... at least it never got worse. I just used ice packs from my fridge to set my feet on and to hold a bit. I gave myself breaks as its not comfortable. Same with ice in the mouth. Didn't seem to need to be constant - just keep that area cooler to constrict the vessels a bit.

    I experienced wicked constipation in the days right after the infusion. So bad that by the time the diarrhea came (and lasted for about 10 days) I welcomed it. See my post above about heading off constipation - if you want more detail, I can share. For diarrhea - I kept a healthy stock of Immodium. I was able to manage it ok by taking an Immodium every morning (and a 2nd on bad days) but some people have to get stronger drugs.

    They will give you anti-nausea meds. Don't wait to see if you get nauseous - take them on a schedule for at least the day of chemo and 1-2 days after. You'll likely alternate Zofran and Compazine. I eventually went to just Compazine as Zofran can cause constipation - but I was only able to do that because I didn't seem prone to nausea. You'll figure out what works for you.

  • ab45
    ab45 Member Posts: 153
    edited February 2021
    Lw22,I got my port today, surgery itself was a breeze with minimal pain. The kicker was asthesthia, where I am they give you deep sedation. Due to my anxiety, they gave me alot of anxiety meds, which has causes wooziness so been in bed all day, chemo starts 2/10 for me so I will be posting and reading tips
    Nothing but positive vibes 2 all of us!!
  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hi AB45. I'm glad your port surgery went smoothly. This is day 3 for me and my port seems to be healing nicely; most of the soreness is gone and the large bandage is off. Still have the "steri strips" on and I'm supposed to leave those there until they fall off.

    I'm dreading the start of chemo and I'm very hopeful that it will do its job. I want to get beyond this nightmare and get on with my life. Let me know how you're doing.

  • ab45
    ab45 Member Posts: 153
    edited February 2021

    lw22

    When did you start chemo?

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    I start on Tuesday, February 9.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited February 2021

    Hi There!!

    Starting TC regimen on the 17th for four rounds, followed by radiation after

    God Bless all of us!

    Julie

  • mslo100
    mslo100 Member Posts: 6
    edited February 2021

    List made for what to take to my first chemo Feb 8..

    I ordered mitts and socks with places to put ice packs to prevent neuropathy.

    I feel that I am both organized and at the same time all over the place. Will I be nauseous? Constipated? Diarrhea? I'm the type of person who wants to know what is coming and there is no way for me to know. Color me anxious

    My chemo cocktail is TCH+P.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    JVFireball--good luck, and thank you very much for the blessing. We can all use that for sure.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    mslo100--you sound like me; trying to cover all my bases without knowing what on earth is ahead. I've decided I'm not taking anything with me to my first session except a snack, my phone, and a notepad. After I get a feel for it, I'll know what I need to drag along and what can stay home. My best wishes to you; let us know how it goes.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    It just occurred to me that I have received absolutely NO instructions about what I should do on the first day of chemo on Tuesday... should I take my blood pressure medication, vitamin, etc??? Why on earth wouldn't MD Anderson send me any instructions prior to the day of treatment? I'm actually a bit annoyed about this, like I need something else to stress about.

    I just sent a message to my MO, asking if there are any instructions I need in advance. Why on earth do I need to ASK THEM for this? UGH. Is a cancer patient expected to be psychic? I feel another meltdown coming on... not sure MD Anderson is living up to its reputation at this point.

  • mightlybird01
    mightlybird01 Member Posts: 161
    edited February 2021

    LW422, I assume you will get AC+T, maybe with Carboplatin? If you start with AC, there really is nothing you have to bring, apart from water. Being well hydrated is key IMO, to quickly flush the cancer drugs. I decided to not eat anything during chemo and for some time after (had a light breakfast 4h before). Basically, just let my body "focus" on the drugs and not burden it with digestion etc.

    One thing that caught me a bit by surprise is the constipation that the steroids cause. I took Mg Citrate to help with that.

    During Taxol, you may want to ice your hands and feet. There are lots of threads on how to do this on here.


    Basically, I only took water to drink and ice during Taxol. Nothing else.

    You will do this. It is scary at first, but it is very doable and you will get through this just fine.


  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Thanks, MightyBird. I'm starting with Taxol tomorrow. I am more concerned about whether I should take my normal prescription medicine in the morning and stuff like that. I'm going to call MDA today and try to behave, but I'm quite irritated.

  • CAWR
    CAWR Member Posts: 13
    edited February 2021

    Hi LW422,

    I just wanted to hop on here for you because I start chemo tomorrow too (taxotere and cytoxan) . I was told to take my regular meds, but to hold off on vitamins (regular multivitamin) until I could bring them in for the doctor to look at and approve. Were you able to talk to your MDA yet? I'll fill in my dx, chemo, surgery info in a little to provide context on my treatment.

    I received a bunch of paper info from my oncologist and read suggestions from others here on the boards, but did feel a little lost as well on procedures and meds until I called them.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hello CAWR, and thanks so much for the info. Yes, I called the chemo nurse at MD Anderson and she was very helpful. Sorry we meet under these circumstances but it's nice that we can "share our experience!" Let us know how it goes for you tomorrow, and my very best wishes to you.

  • CAWR
    CAWR Member Posts: 13
    edited February 2021

    Great! I am so glad to hear that you got the info you needed. Well... Here's to a dexamethasone night with underlying angst for tomorrow for both of us. :)

  • ab45
    ab45 Member Posts: 153
    edited February 2021

    Good Luck Everyone starting chemo tomorrow! I start Wed :( 😞 you are in my thoughts!!

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Yep; angst has been my middle name for the past few weeks. I hope everyone having their treatment this week will do well. Be sure to check in and let us know how it goes. Good luck to all.

  • JN5000
    JN5000 Member Posts: 72
    edited February 2021

    Hi all! I'm going to have A/C for 2 months then T for 12 weeks in a couple weeks. Just waiting to get the port scheduled. Thank you, everyone, for posting suggestions and help, and questions. I went on a shopping spree yesterday and bought many items recommended. I feel somewhat prepared because of it. Thank you! It's nice to know you're all out there and that I'm part of this community.

  • Maddy83f
    Maddy83f Member Posts: 78
    edited February 2021

    JN5000 - welcome to the community that we all wish you didn't need to join. I did A/C T a year ago and want you to know that I am really feeling good and my hair is back and thick and somewhat curly. Don't know if you have shopped for hats but I found a lot of great hats at headcovers.com. I bought a bunch, tried them on at home and then returned the ones I didn't like - it was really easy. I found the cloche (sp?) to be great to wear without a wig. Ended up not wearing the wig/halo I bought - with the pandemic I wasn't going out much. Good luck with your treatment -

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hey JN5000! So glad you could join us, but hate the reason we're all here. Let us know how it goes as you move through the treatment.

    My first chemo was today and it went very well. The only pain I experienced was accessing my port; it hasn't fully healed and is very tender... but that was only for a few seconds. I didn't have any reactions to the drugs, so yay. I guess I expected it to burn or something. :-s I know that the chemo is cumulative and I will have lots of hard days, but today wasn't bad at all.

    I hope everyone's first day goes as smoothly as mine did!

  • JN5000
    JN5000 Member Posts: 72
    edited February 2021

    LW442: I'm so glad you had a smooth first treatment!!

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Thanks, JN! I'm sure yours will go smoothly, too. I think the anticipation is much greater than the event.

    I'd also like to happily report that I am feeling fine today; day 2. I have heard that day 3 and 4 can be rough, so I'm enjoying this day.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    AB45!!! Let us know how your first treatment went today. I hope it was an easy day for you.

  • ab45
    ab45 Member Posts: 153
    edited February 2021

    LW422

    Very rough night, up every two hours with naseau, could not keep my eyes open about 3 hours after chemo, this morning, I feel like I have been run over by a train, thinking I have 3 more AC chemo treatments and they are suppose 2 get worse each time,, so my emotions are affecting me a bit, to be honest...I knew this was the harsh treatment but the red devil is kicking my butt!! I wish I had better reports but it definitely was rough the first go around for me

  • AC602
    AC602 Member Posts: 5
    edited February 2021

    Dear All,

    Tuesday was my first chemo session. Everything went smoothly and my nurse is a gem! I happened to get a private room, because all of the other "chemo bays" with four "chemo chairs" per bay were full. I was there from 11:00-2:00. Was served lunch- chicken noodle soup, roast beef sandwich, apple and a cookie from a wonderful upscale grocery store nearby. I listened to music, decided not to watch the Impeachment trial and even took a nap. I came home and slept like a log for an hour and 1/2. Did have a whopper of a headache which persists a bit today, but am assured that it should pass by tomorrow. I did feel a little queasy yesterday- took the anti-nausea meds which seemed to help but all food tastes pretty weird. So am a bit humbled about the cumulative effect over time, but know I will get through it. Plan not to get a cooling cap and instead will get a buzz cut before my hair starts to fall out.

    Feeling a little queasy today, but headache is mostly gone. Went running around like others last weekend to stock up, so I wouldn't have to go out much, but realize I still need to get some hard candies to suck on to help with nausea and hunger that happens at the same time.

    I so appreciate everyone's posts-insights, advice, etc. Thank you to all of you for your well wishes love and support! I couldn't do this without you for sure. Best, AC602

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    AB45--aw, I'm sorry you had a rough day. My treatment plan is Taxol first, then the AC. I'm nervous about getting the AC, but so far I still feel OK with the Taxol. I slept like a log for 8 hours last night, and so far no nausea or tiredness. I have a slight flush on my cheeks this morning, kind of like too much blush, but no "rash."

    I hope you feel better today. Take it easy and remember that we will get through this!

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