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Starting Chemo May 2021

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STJA16
STJA16 Member Posts: 55

I am starting my chemo journey mid May 2021. My chemo port was put in yesterday and was much more painful than I expected. I am in less pain today and experiencing some discomfort. Hoping it will minimize soon. I am a bit nervous about starting chemo and managing the side effects. Anyone else nervous?

I could not find a topic already started for this month but point me in the right direction if this is a duplicate.

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  • STJA16
    STJA16 Member Posts: 55
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    I have been attending the recurring zoom session on Tuesdays: Going through Chemotherapy. Great exchange with others going through chemo and surgery. Join if you can.

    We're making this a recurring meeting!

    Going through Chemotherapy?

    Come be with others just starting or in the process of chemotherapy in a relaxing, confidential and supportive virtual environment. This will be a recurring meeting.

    To Register, download the Zoom app and click the link below.

    When: Every Tuesday 01:00 PM Eastern Time (US and Canada)

    https://us02web.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC

  • STJA16
    STJA16 Member Posts: 55
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    JavaJana, that's very kind of you. I did get the booties and mitts. Do you think they helped?

    Have not heard of the swap. Need to chexk that out.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Hi STJA16!

    I'm already in the April thread because I start this Thursday, April 29, but I'll most likely be more in sync as far as timing goes with May folks. Although, I've found everyone in every thread has been super helpful.

    The day my port was put in, I was partially sedated. It felt like the surgeon was stuffing it in and shoving it, which afterwards looked like he basically did. I had brusing that is just now turning yellowish and going away, a week later. There's still some discomfort, but I think it's my collarbone being a little sensitive since the tube passes through there. Day three felt so much better as far as soreness went.

    I'm two days until Go day, so I'm super anxious. But I am trying to stay positive. I want to get it over with and kill this sucker and it's little minions if any. I will be using the dignicap system since i'm doing Taxotere, and also icing hands and feet. I think my concern right now is having to pee in between and being really really cold. I hope it's not as bad as I think it will be. I feel silly wanting to bring all these prep items, but I also don't want to regret having not tried.

  • STJA16
    STJA16 Member Posts: 55
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    AlwaysMeC,

    I fell asleep during my procedure and recall very little. I do have minor bruising but it is bandaged so can't see it well. Thanks for the feedback on that.

    I feel the same way with taking all the stuff in with me but i would rather have them. They did recommend bringing a blanket, sweater and snacks or lunch. I sure expect a bathroom near by.

    Let me know how it goes for you.

  • STJA16
    STJA16 Member Posts: 55
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    Will get that power also. Someone else mentioned it to me but there are so many, i didn't know which to buy.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    JavaJana, it's good to hear your hair is growing back! I'm not too concerned about the actual hair loss, but I really don't want the follicles to die. My mom has alopecia, so permanent hair loss has always been on the back of my mind.

  • STJA16
    STJA16 Member Posts: 55
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    JavaJana,

    How do i locate the swap section?

  • txlorelei
    txlorelei Member Posts: 68
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    I'm scheduled to start Taxol on May 7, so I got my port installed yesterday. Today I'm experiencing discomfort and itching at the site though it's getting better.

    I ordered ice socks and mittens from Amazon but I decided not to cold cap because the success rate with AC is supposedly low. I have ordered some hats/beanies to try on, and I'm wondering if/when I should cut my hair short. Just the thought of wearing a wig in a Houston summer makes me sweat.

  • annsoptera
    annsoptera Member Posts: 27
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    Thanks so much for starting our group, STJA16!

    I’m starting TC one week from today (May 5) and plan to use the Paxman cold cap because of the Taxotere and risk of long term hair loss. Plus, I am planning to work throughout treatment. I’m definitely worried about neuropathy so I’m hoping the icing on my hands and feet will help. I know we’re also supposed to drink a lot of fluids throughout treatment but, like AlwaysMeC, I hope I don’t have to extricate myself too often from my various icing apparatuses to use the bathroom! And I hope all goes well for your first treatment tomorrow, AlwaysMeC. Sending you lots ofpositive thoughts!

  • STJA16
    STJA16 Member Posts: 55
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    AnnSOperta, My port definitely feels better today compared to Monday. Improving every day. Still taking Tylenol. The nutritionist told me to drink 80 to 100 ounces or fluid every day. She said it does not have to be water and suggested sugar free Gatorade, juice, no grapefruit juice, ensure protein max if needed and a specific brand of the L glutamine powder supplement. I did get a wig and the caps even with the warm summer, I think i will need them. Keep us updated on your treatment next week.

  • lw422
    lw422 Member Posts: 1,403
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    Hi everyone. I'm in the midst of chemo, having started back in February. I just thought I'd give a bit of advice based on my experience so far. I'm on weekly Taxol and I have not had any significant SEs. I don't drink a lot during the treatment, but while getting the Taxol (one hour infusion), I suck on ice chips, wear icing socks, and hold a regular ice bag in my hands, like this...

    Mueller Ice Bag, Blue, 9 Inch

    The nurses will fill the bag with ice for me and provide cups of ice chips. I find the ice bag much more convenient for my hands because I use my phone or tablet a lot, plus trying to keep ice chips in my mouth means that the icing "gloves" are a pain to deal with. This has been my experience after trying a few different things for keeping my hands cold... I started out taking two frozen bottled waters and holding one in each hand. :biggrin: That works well but the bottles are heavy to wag around.

    I don't drink much during the infusion because I don't like dragging the IV apparatus down the hall to the bathroom. As soon as I get home I chug water, and keep chugging until bedtime.

    After 10 Taxol treatments, I have had ZERO signs of neuropathy, my nails look great, and I haven't had issues with things tasting weird. Not sure if all the icing is working or if I'm just lucky... but I'll keep icing!

    Also, I find that having food in my stomach keeps nausea at bay, so I make sure to eat a sandwich or something light a little while before the treatment.

    Good luck to you all; I wish you the best. You can do it!

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Thanks for the positive thoughts AnnSOptera!

    I went in today for a patient education one on one session with one of the infusion nurses. The take away I got was that they are and will always try to be available for anything, which was really comforting. Well not everything, but she did keep reiterating not to hesitate calling on them.

    The first session will last 5 to 6 hours for me. I will get pre meds for an hour, which consists of two anti nausea solutions. Next, i'll get about two hours of the targeted stuff; Perjeta, then Herceptin, and last will be chemo; Taxotere then Carboplatin. It will be a long session because they have to do a slow drip to monitor my reaction. If everything checks out, it'll be 4 hours for the remaining 5 sessions.

    Today, I had to prep by taking Dexamethasone twice/day, and I am to take it for three days. I have to go back in on Friday for the bone marrow shot. She said I have to take it at least 24 to at the most 72 hours from the time I stopped the chemo part of the infusions. And the recommendation is 3 quarts (96 oz) of water a day. I may do like LW422 recommends and drink a whole 24 ounces before leaving the house and barely drinking while there, then chugging another flask after, and drinking the rest throughout the evening.

    Hopefully, I'll be well enough to follow up soon. Also, the nurse advised me to ask my oncologist's office to send my lab requests to a place close to my home, before the next session. They will always take blood at least 24 hours before the infusion, and she said it would be more convenient for me and lessen the time I have to spend at the infusion center.

    - C

  • STJA16
    STJA16 Member Posts: 55
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    LW422

    Great advise on drinking water before the treatment. I have one of those ice bags so i may also take that and see if i prefer that to the mitts

    Did you feel like you had too much things with you? Ice bag, blanket, water, snack, pillow , entertainment or book etc. Is that typically what people take?

  • lw422
    lw422 Member Posts: 1,403
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    STJA16--I don't take much with me at all. I carry a small lunch-sized cooler that my icing socks will fit in, along with a sandwich, a drink and the empty ice bag. Other than that I just have my purse and phone. The MD Anderson chemo facilities provide a light meal if I am there during lunch or dinner time, or provide a snack anytime. The nurses fill my ice bag for me and provide cups of ice chips, and also provide a pillow and those heavenly warmed blankets.

    I have the Kindle app on my iPhone, so I can read or surf the web on my phone; no books needed.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    I'm still here at the infusion center. Because of the Dignicap, I've had to stay after for another 90 minutes. In all, I will have been here from 9 to 5:30.

    I also brought way too much stuff. I only ended up eating two protein bars and a small two cups of lunch food. The warm blankets they had were good enough. They weren't as cozy as a fuzzy one, but they always provided a warm one. Also, the water tip was spot on. I only had to use the restroom twice, and chugging a flask of water before my appointment time made me feel hydrated enough. Next time around I will not be taking the big bag that I packed. I probably will only have the small cooler and a small bag for electronic items.


  • STJA16
    STJA16 Member Posts: 55
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    AlwaysMeC. Glad to hear it went ok. I will pack lighter than i planned. Are you feeling ok today?

  • STJA16
    STJA16 Member Posts: 55
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    LW422

    I will pack lighter. They did mention warm blankets so will leave mine at home. Also plan to carry my Kindle.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    I've held up okay so far. I still had to take steroids the day after, and I think that gave me enough energy to feel somewhat normal, until I got the bone marrow shot. They gave me Ziextenzo. That immediately made me feel tired, and I got some much needed rest. But I'm somewhat of an insomniac now. I can't seem to get more than three hours at a time. My mind today feels active and I tried to get up and maybe clean a little around the house. We have two little ones, 6 and 7. But my body was saying no the whole time. I think the worst of it is really any underlying issues you might have. I have a history of acid reflux and it's horrible right now. I can barely drink without having to stop and let my tummy settle between sips. I also have eczema behind my ear that has been pretty calm, but now it's flaring up. So really the underlying issues side effects seem to be worse than the fatigue and weird lack of taste that I've experienced. I'm going to ask my MO tomorrow if there's anything that will help with at least the reflux and lack of sleep.

  • moderators
    moderators Posts: 8,085
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    TODAY:

    Come be with others just starting or in the process of chemotherapy in a relaxing, confidential and supportive virtual environment. This will be a recurring meeting.

    To Register, download the Zoom app and click the link below.

    When: Every Tuesday 01:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting (if you register once you will not need to register for future meetings):

    https://us02web.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC

    After registering, you will receive a confirmation email containing information about joining the meeting.

    See you then!

  • blmike
    blmike Member Posts: 195
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    I hope you ladies don't mind if I join you. My wife, Polly, is starting Abraxane this month. She had her port put in today and as soon as she got home, she fainted. After she came to, we took her blood pressure which was 79/48. Yikes! Apparently this was dehydration. She rested some and feels better and her most recent BP was 125/66. She still in a fair amount of pain (which the surgeon told her nothing about but I see on breastcancer.org that it's not unusual).

    We got mittens and slipper for icing and she'll sip on ice chips. She's not going to cold cap. She was very nervous about the port and she's super nervous about the chemo. Fingers crossed it won't be too bad for Polly or the rest of you. Best of luck in the terrible journey.

  • STJA16
    STJA16 Member Posts: 55
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    BLMike,

    I had my chemo port put in last Monday. Yes, very painful. I decided not to take the pain meds and only took Tylenol even with the level of pain. It took until day 3 for me to feel less pain and discomfort. The doctors forgot to mention how painful it would be. Others on this site encouraged me on the process. Hope this helps you and your wife. I found that sleeping on a high wedge pillow helped get me in just the right position to reduce the pain. I am day 8 now and I am aware that something is there but I dont feel pain. If I move or twist my body in a certain way, i do feel pain. I start chemo in a week so that gives more time to heal. So sorry to hear this.

  • STJA16
    STJA16 Member Posts: 55
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    I have participated in this call for a few weeks. It is enlightening, positive and a great place for people to share experiences and gain knowledge. We are all at various stages of our journey and this is a safe place to talk. The conversations go way beyond chemo, and include surgery, radiation, food, family and mainly supporting each other through the journey. I encourage you to join the call next Tuesday. STJA16

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Welcome BLMike. I'm sorry the circumstances have you joining our group.

    I'm about three weeks out from my port placement and I have resigned to always having a tugging feeling in my shoulder. Also there's a sharp pain sometimes when I move a certain way, but that's all been checked out to be okay. Must be a sensitivity to the placement.

    The process of getting the infusion isn't scary at all. I was imagining mean nurses and feeling alone. But the nurses were gentle, informative, and generally nice people. My regimen included anti nausea meds by IV, so I didn't have any side effects during the process.

    I am trying to figure out if I had bad side effects from the dexamethasone steroid though. I think they were too strong for me and gave me really bad issues. I have asked my doctor if we could skip it next time, unless it helps the chemo in some way. If it's only for anti nausea, I am hoping skipping should be fine because they loaded me with two IV meds and wrote a script for pills.

    I hope your wife isn't too anxious about the actual infusion process.

  • pchyen
    pchyen Member Posts: 96
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    Hi STJA16, Nicole was on the Zoom call today, it was her second Zoom session. She really enjoyed the weekly session and found it very informative and will definitely continue to attend. There is great conversation to be had! (I sat with Nicole and eavesdropped).

    Hi BLMike, Hope Polly's pain will subside soon. My wife Nicole had her port put in almost 2 weeks ago, it was painful for a while but she managed with some Advil. Nicole couldn't take Tylenol as she wears a continued glucose sensor and Tylenol will mess with the sensor. There is still some pain but it gets a little bit better everyday.

  • blmike
    blmike Member Posts: 195
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    Thanks all. Polly's still in a fair amount of pain from the port, but it's good to know it's not just her. It looks OK so I assume everything is fine with it. Her MO office called today to scheduled an Introduction to Chemo meeting for Friday and then to start chemo a week from tomorrow. It's starting to get real now!

  • annsoptera
    annsoptera Member Posts: 27
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    Reporting in from TC 1 of 4 which I had today. I think all went well and I feel fine so far... I haven’t had side effects from the steroids or other ancillary drugs, but we’ll see how the next few days go. The nurses were great. The toughest part of the day was icing my hands and feel during the taxotere but it’s far better than having neuropathy!

    I hope everyone’s treatment gets off to a good start!

    BLMike- I found the chemo education meeting to be so helpful. I brought a long list of questions with me and they answered them all. I hope Polly gets relief from her pain soon!

  • txlorelei
    txlorelei Member Posts: 68
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    What kind of things did they cover in the chemo education? I’m scheduled for my first treatment on Friday and no one has mentioned anything like that to me. I do have an appointment with my MO earlier on the same day so maybe she’ll take care of that then.

  • annsoptera
    annsoptera Member Posts: 27
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    TXLoreli — My guess is that your MO will go over the same ground that my MO’s PA did with me. She covered the most common side effects, what to expect when, and how best to manage those. She explained what meds would be prescribed for use at home, which OTC things I should have on hand, and generally a description of how the treatment process, They also gave me a lot of written material to review which went into more detail, all very helpful but also overwhelming!

    Sending you good thoughts on Friday! I hope it all goes well

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    AnnSOptera, I'm hoping no negative side effects for you! One down. We got this.

    TX, my appt lasted an hour. It's a good time to write down any questions you might have about the actual infusion process and what to expect in the days after. I called in a couple of times after hours because I wasn't sure if what I was experiencing was average. Finally, after talking fo a few people, I got that I was experiencing worse than most because of the steroid "rage". Don't let me scare you. I'm just super sensitive to small amounts of meds! I'm hoping to be better prepared next time.

  • blmike
    blmike Member Posts: 195
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    Well, we got a shock this morning. Polly's MO called her to say that her liver enzymes are through the roof, she's "really concerned" about her, and wants to start chemo tomorrow rather than next Thursday. Our heads are spinning. Polly had been scheduled for some chemo training tomorrow but instead she'll be diving right in to chemo itself tomorrow. This has cause untold stress on her because she was really anxious about chemo anyway. Ladies, I'll report back on how tomorrow goes.