Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Chemo starting December 2018

145791023

Comments

  • lilliangish
    lilliangish Member Posts: 54

    Nanette, that was a beautiful story. You did it with style and grace. You are in my heart today honey, cheering me up.

  • Christine1975
    Christine1975 Member Posts: 23

    Got my new wig today! My husband and sons don't like it :( I think they think I look weird or 'not myself' or something, even though it's the same color and length as my real hair. I don't think I'll wear it much, but it is nice to have one for special events or whatever. Hope you're all doing great!!! Sending so many hugs and positive vibes to all!!!!image

  • BeckyJL
    BeckyJL Member Posts: 81

    Nanette - you are a bad ass bald warrior! I, too, find it more liberating to take some action, to feel like I have even a modicum of control. Today, I had to go to work for an inservice with my fellow faculty and administration (I teach in a community college). Many knew I'd had surgery, some knew I started chemo over break. No one had seen me without hair. I dreaded the questioning looks, the whispered questions, any non "normal" reaction to me. So, I picked out a tighter hat, one that clearly shows I have no hair under it, and it was VERY brightly multi colored. It is a hat that says "Look at me!" I figured they were going to look anyway, let's put it all right out there and get it out of the way. Did I get looks, jaws dropping and frowns of concern? Yep. But it wasn't that bad. At one point a friend asked if I really had lost all my hair, so I whipped the hat off and showed her my bald head! We laughed. Ultimately, it was no big deal. And I liked that I at least felt like I had some control over the situation. I approached it on MY terms, no one else's.

    As far as second round goes, tomorrow is one week from second infusion. I had a good day yesterday, though more tired, and today, more tired and some bone pain again. A soak in a warm bath and a tylenol seem to be relieving that. Bad news, a bit of thrush starting . . . ugh. As if having all my food taste like paste wasn't bad enough. Silver lining, I've lost all the weight I put on over Christmas when I could taste for a while. At this rate, I'll make my 100 lb mark in a week or less (I was dieting all year before chemo, so don't yell at me, lol).

    Christine, I think you look fabulous!!!!!!! That's a really good wig - I wouldn't have known it was a wig if you hadn't said so! I talked with a friend at work today who has had cancer and chemo and whose wife now has cancer. He honestly wasn't sure which role was more difficult. I found his perspective interesting and thought provoking. Not sure it changes my behavior any, but thought I'd put it out there for what it's worth. Stay strong and you do you!

  • Tsheresse
    Tsheresse Member Posts: 1

    Hello everyone, I started chemo on 12/31 and I have been having some rough days. I have been having side effects that are really uncomfortable. I am having 4 rounds of AC and 4 rounds of Taxol every 2 weeks. I started having nausea and headaches immediately following chemo. I am struggling to get control. I am trying to make sure I drink all of the water they want me to but it's hard. Food still tastes ok but drinks are off a little. Can anyone give any other advice on how to cope with the nausea? Are there any foods you should stay away from, or any food that can be helpful? I am praying for everyone on this board. We will beat cancers butt! I'm still new here so I'm trying to learn all the terms and how to work everything.

  • mcbaker
    mcbaker Member Posts: 1,787

    Did you receive prescriptions for prochlorper and ondansetron? did you call your MO?

  • lilliangish
    lilliangish Member Posts: 54

    Hi Tsheresse, welcome to the group. I'm sorry you're feeling so bad! Days 4 and 5 are the hardest for me.

    Did your doctor give you any pills for nausea, like maybe Zofran or Reglan? That's what they gave me to take in case I had nausea. If they didn't, be sure and call your doctor and ask for help with nausea. It's easier if you stay ahead of it. Have any ginger ale handy? Crackers, applesauce...stick to bland. Don't eat your favorite foods when you have nausea...they'll no longer be your favorite after this is over.

    If you can get out and walk for even a few minutes...fresh air helps too. And sleep. And yes, lots and lot of water.

    Hang tough, but ask for help from your doc if you need it ~ you can do this! Couple more days you'll start to feel better I hope.

  • nanette7fl
    nanette7fl Member Posts: 412

    Tsheresse

    I'm so sorry for feeling so bad. I remember my first weeks being really rough too! What Lillian said is correct. I lived on my nausea pills..both of them. I took 1 as directed and then about an hour after eating I had to take the other one. Some days I just slept to deal with it as nausea itself makes you tired. I bought bananas and would snack on them and they helped out a lot. Remember the BRAT diet...bananas rice applesauce and toast or plain crackers.
    We have to use our food to replace what these chemicals are robbing us of. I take a womens 50+ vitamin and extra zinc and vitamin D3 to help compensate my body overcome them chemo.
    Hang in there and listen to your body. Eat small meals... nap when you can oh and try getting some flavors for your water. I use them 1/2 strength and I love it. Florida has awful water... we're on a well with filters but its still gross. Oh one more thing...try using plastic ware instead of silverware...i had to switch because i had gotten "metal mouth" and now the nausea isn't so bad.
    Sending (((hugs)))
    ~Nanette
  • OCperegrina
    OCperegrina Member Posts: 10

    @Tsheresse - echoing what the other ladies said! Welcome and sorry you are feeling bad! Take a nausea med at the first sign of a flutter to stay ahead of it. Ask your oncologist if they aren’t working. My observation has been that they started with low levels, but have lots of tricks up their sleeves (stronger meds) in case they are needed, you just have to speak up. I ate a lot of crackers and cream cheese. (I know that sounds weird, but somehow the creamy offset the super salty persistent taste in my mouth. And once that seemed to work, I also threw some veggies / flavors in it to keep it interesting and appetizing - lemon zest, canned artichokes, powdered veggie dip, olives, whatever flavors you like.) And I’m usually not a sweet person, but ice cream also helped. I figured at least I was getting some dairy(?) and during chemo, anything goes as long as you find it appetizing!

    I also used queasy drops/pops. I’m not sure how they worked but it seemed to help. Three Lollies will send those currently in treatment (in the U.S. only) a FREE 6-piece box of their new Queasy Drops Plus with honey and pectin for both nausea and dry mouth that often come with chemo. Email [email protected] with your name and address. Mine came pretty quickly, and I also ordered the pops on amazon.

    For water, I drink mine out of a metal straw with a silicone tip in a resusable container. It’s washable, reusable, and goes seemed to go straight down without too much tasting. And I could carry it around the house with me, so it was always at my side. And I hear you, I got very tired of water, but kept reminding myself that the drugs are flushed out through the kidneys, so the water was helping them get OUT of my body. I tried powdered Gatorade to see if it worked, but ultimately went back to plain water. I also tracked how many refills of my water bottle so I knew how much progress I was making each day on the water. It was mentally good for me to see that I drank so so much more water than pre-chemo. I even added water consumption to the chemo symptom tracker from American cancer society so I could track it as an accomplishment for the day. Got to take the wins where we can get them!

    Good luck and you’ve got this! Keep us posted on how you are doing!

  • JCSLibrarian
    JCSLibrarian Member Posts: 548

    I was rejected from my third Abraxane infusion this morning. White blood cell count was too low even for the Neulasta to fix. Any thoughts on how I can make that better? MO is saying wait two weeks and start the next round with a slightly lower dose. I am disappointed as I wanted this process to go smoothly and hit all the right marks. Guess I will spend this rainy weekend inside avoiding any infections lurking around. Loopy

  • OCperegrina
    OCperegrina Member Posts: 10

    @Nanette - you hair story had such a lovely conclusion! And you look great! Thank you for sharing! It’s so hard, but in the end it sounds like your upbeat attitude and amazing support circle got you through with flying colors. It’s really the best outcome one can hope for in our current situations! (And the advice I got from my bald guy was actually to use the face lotion on my head. This is the first time it’s been exposed to so much so slather the good stuff on!)

    @christine your wig looks great! If I saw you at the grocery store, I would think you were very put together with a great blowout! :) I have wig appointment next week, and hope I can come out with as nice of an option!

    @becky way to own it!!! You are an inspiration! My daughter is still a bit sensitive about my big bald head (and to be honest so am I), but hopefully I can make the leap to embracing it with similar poise and confidence soon!

    I find it really uplifting to read the venting and stories and advice that are so very specific to our collective journey. I'm hoping a year from now this will all be a distant memory but at this moment in time it sure is nice to feel like there is a tribe that understands all the weird nuances and hard things we are going through on a daily basis! Wishing all a happy Friday and a low key weekend with tolerable SEs!

  • OCperegrina
    OCperegrina Member Posts: 10

    @JCS - so sorry things aren't going according to plan. While I don't have any specifics on a solution, I can completely understand the disappointment of drawing this thing out longer than you expected. I would only say if you like your MO, trust their opinions on next steps. While my MO is not necessarily the warm, friendly bedside manner guy (that's more his PA), I completely trust his recommendations and it's clear he knows the science and most effective next steps. They don't always align with what I want to happen (exhibit A - chemotherapy). But we all handle and process this kind of news differently, so listen to your gut, and curl up inside this weekend and make everyone around you wash their hands a lot. :) (I'm thinking of putting a sign on my door about this house is immunocompromised, and telling people to be prepared to catch their coughs and sneezes and wash their hands upon entry. Too much?)

    @LillianGish - a sincere thank you for mentioning your infection after round 2. I noticed some redness and a sore on my left breast (where I had surgery and the tumor was removed), and showed it to my PA while I was in the office for Neulasta. She thinks it is probably an early sign of infection, so she got me oral antibiotics ASAP, and hopes we can calm it down that way, and we took pictures and drew on my breast, so we knew where the redness was and could see if it expanded. I feel much more empowered since I know what it is, and under what specific circumstances to call the after hours / on call MO on the weekend. (For some reason, calling a doctor on the weekend is very intimidating to me. The whole idea of explaining my situation to a new doctor that doesn't know me makes me uncomfortable, especially if I'm not sure if it warrants a call.) So, needless to say, I feel empowered with knowledge, and would not have thought to bring this up to her had you not mentioned it in your post. Thank you!

  • lilliangish
    lilliangish Member Posts: 54

    JCSLibrarian ~ every single person is different and you're just getting started. You haven't missed a mark....sounds like they are just figuring out the right chemo dosage for you.


    I found this article which I thought was pretty good - healthy, well rounded diet of protein and vitamins sounds in order:

    https://www.oncologynutrition.org/erfc/eating-well-when-unwell/white-blood-count-diet/

  • JCSLibrarian
    JCSLibrarian Member Posts: 548

    Thanks LillianGish! Good article. I will definitely try adjusting my diet. I also read that B12 could help with low WBC. I do not want to add even otc items without checking with my MO.

    OCperegrina you are right about everyone being different. My MO and I are still in the “dating” phase of our relationship. I am working on trusting his decisions.

    Tomorrow is another day and the rain here is supposed to stop for a bit. I will think about something else and find a happy place to spend some time.

  • lilliangish
    lilliangish Member Posts: 54

    Christine, you are rocking that wig! It looks great on you.

    OCPeregrina, glad you noticed the infection. Sounds like you handled it perfectly. I feel funny calling after hours/weekend too. We shouldn't, but I understand. I suspect by the end of this Mr. Toads Wild Cancer Ride, calling will get easier.

    Had my bone scan today (because of my back ache). Before going, I studied up on bone scans...how they're done, what they diagnose, what to look for, what a normal scan looks like and what a cancerous one looks like. I did this just in case I got a peek. And I did get a 30 second peek from across the room. What I saw looked normal - lots of white bones. Total amateur opinion of course. Then I asked the guy who I know can't say too much, "so....are those my bones?" He said yes, and I said, "well they look like pretty good bones if I say so myself." Smile

    He then said, "this must just be a baseline bone scan for you. This is your first one, right? Yes, they use baselines to compare to later scans." To my hopeful, grasping at straws mind, that said the scan looked normal to him. All that information will keep me sane until Tuesday when the doctor gives me the results.

    We are Warriors, not Worriers. Keep fighting!!

  • Christine1975
    Christine1975 Member Posts: 23

    Good morning, beautiful warriors!!! Thank you so much for all the kind words about my new wig! I'm feeling a bit better about it, but probably won't wear it all that much. I'll stick with warm hats most of the time. How are you all feeling today?

    So, yesterday was my 2nd round and I had a scare! About 5 minutes after the Taxotere started, my chest tightened up, I got really hot, my face turned beet red and couldn't breathe! The nurses got on it SO fast and stopped the infusion, gave me Benedryl, then fluids for 25 minutes. Then, they re-started the Taxotere and I was absolutely fine. The Cytoxan went great, too. It was definitely scary....I wasn't expecting it because my first round was so uneventful! The nurse said it probably won't ever happen again and it's not uncommon. Glad it's over!

    Otherwise, I'm feeling good this morning. The steroids definitely help my energy level and the Aloxi works quite well for nausea. I don't even need Zofran or the other nausea med so far. I do get diarrhea (last time it started on Day 3) and so I'm expecting it to happen tomorrow. Luckily, Immodium works great and gets it right under control. I've been really blessed with how it's gone so far for me. My bloodwork was pretty good....white count was 4.0, but she said I'm a little anemic and need to get more red meat, spinach, and beans in my diet. If it doesn't improve, she's putting me on iron supplements. We shall see. All in all, I'm just glad to have Round 2 done! My Neulasta patch is on my tummy and will go off about 5:00 pm today. I take Claritin and haven't had a single bit of joint pain! Yay! Do the rest of you have a good experience with it?

    Hope you are all feeling strong and minimal SE's this weekend! I think of you all so often and send you all hugs, positive vibes, and prayers!!! I don't know what I'd do without this group! It's the best!!!

  • santabarbarian
    santabarbarian Member Posts: 2,310

    For nausea and weird tasting water/ drinks.... I found that spiking my water with a little sliced ginger, or about 1/5 ginger kombucha helped it taste much better. Bone broth is another good beverage with a flavor. I found strong flavors (wasabi!) cut through the weird taste and tasted good... but weak flavors were very metallic.

  • mcbaker
    mcbaker Member Posts: 1,787

    I enjoy frozen smoothies best. Except then they chill the rest of my body.

  • BeckyJL
    BeckyJL Member Posts: 81

    Just wondering, is anyone else working while going through this? Monday is my first day back in class since break and I'm a bit nervous about my energy and chemo brain.


  • mcbaker
    mcbaker Member Posts: 1,787

    try it, but remember that a highly qualified sub is better than a teacher struggling to make it through an hour at a time. Think of your students first.

  • Christine1975
    Christine1975 Member Posts: 23

    BeckyJL,

    Yes, I feel exactly the same! I am an education consultant and adjunct professor at a community college and head back on Tuesday (I've been on break since December 21). I work part-time, so it's been doable so far, but as the cumulative effects begin to add up, I'm nervous about keeping up at my usual level. I guess all we can do is the best we can, and not feel guilty if we need to call in sick (easier said than done, I realize.) Good luck on Monday!!! Try to rest up tomorrow as much as possible and reach out here for support. Thinking of you!

  • B74
    B74 Member Posts: 43

    Tsheresse - I'm from the Jan starters group (1st treatment on Jan 4) but having similar treatment to you - 4 x AC then 12 x Taxol. The side effects hit me about 4 hours after the infusion and I've felt much worse than I ever expected. Exhaustion (no dexamethasone-induced insomnia, just sleeping all night & half the day), terrible nausea (taking all my prescription meds but they don't do much), headaches, water makes me sick, and just can't do a thing except lie on the lounge. I'd been warned by others that AC is a really rough treatment. I'm definitely talking to my MO about changing the meds for next time. Hope you start feeling better soon - my friend who had AC said she was sick for about a week, so hopefully you are about to turn the corner.

    Ps I bought seasickness wrist bands & they have got me through a few waves of nausea when nothing else did

  • mcbaker
    mcbaker Member Posts: 1,787

    becky, Christine's statement highlighted a possibility. Maybe half-days would give your students consistency and the reassurance that you are doing well enough to keep contact. Plus an excellent training experience for a sub who may be a recent grad. Might be best to start it as soon as it can be set up.

  • BeckyJL
    BeckyJL Member Posts: 81

    I teach college - so subs aren't a thing really. I already backed off on my normal schedule - only two face to face classes both at the 10 am hour, then 3 online for this semester. So hoping an afternoon nap could help. (I'm a horrible napper). Still, nervous. I'm normally a fairly high energy professor, lots of discussion and interaction. I can still do that sitting down (not optimal, but doable) but worry about the chemo brain part of it. Actually, worried about all of it. It's a community college and we struggle to get qualified adjuncts to begin with. If I don't teach, my students don't get this class. I've tried to stay upbeat, but this weekend has been hard.

    Just curious, but what do you teach Christine? I'm Political Science, your basic gen ed survey course.


  • Flower216
    Flower216 Member Posts: 87

    Christine...I'm so sorry this happened to you! I had the same reaction to the taxotere two weeks ago on my second treatment. The only difference was I first got a pain in my stomach before my chest tightened up. For my next treatment, my doctor is changing the taxotere to abraxane. This a crazy adventure we are on!

  • Christine1975
    Christine1975 Member Posts: 23

    Becky: I'm so sorry you are having to worry about all this as you get ready to head back! It is definitely difficult to think about our previous energy levels and performance and compare trying to keep up with 'chemo brain' and the host of other SE's we are suffering! We will get through it, though! One day at a time! I am the director of our HiSET program (formerly the GED) and the ESL Consultant for our campus. I teach on Tuesday, Thursday, and Friday mornings and am done by 1:00. My other duties are 'consultant' tasks, which I can do from home. My work phone is always ringing and texting, so it can be a challenge, but I do enjoy part-time. I used to teach elementary and there is NO way I could be around all the hotbed of germs with little ones, so I am very thankful I switched careers before my diagnosis. Best of luck as you return to work this week. Keep us posted!

    Flower: I'm so sorry you had such a scary experience, too! My MO isn't going to change my chemo regime, I just think she is planning to give me more steroids prior to my infusion, and possibly Benedryl as a preventative. Isn't it weird how it happens to so many people on their second round? You would think it would happen on the first, but what do I know?? I've heard of many people having it happen on the 2nd, and then never having another problem again. I hope the new drug works well for you and you don't have any scary reactions! You are right: this is an adventure for sure!

    Sending everyone of you on this board big hugs and encouragement on this Sunday. For everyone heading back to jobs, school, etc. after break tomorrow, GOOD LUCK! Let's keep each other positive and updated....I LOVE hearing how everyone is doing!

  • nanette7fl
    nanette7fl Member Posts: 412

    I seem to be having some headaches this week but my blood pressure is just fine. Should I be concerned? Are headaches part of taxol or herceptin?

  • el7277
    el7277 Member Posts: 22

    Hi Becky. I had the week off between Christmas and the new Year and after my first day back on the 2nd I came home and napped! Listening to my body is something I am taking very seriously and that guides my decisions. I have had only one TCH treatment so far followed by 2 weeks Herceptin alone. TCH again thisThurs. The first round affected my digestive system so badly that I lost a week and sleeping was a nightmare. Herceptin leaves my with headaches 2 days after and the fatigue is something with me often. After speaking with my boss and HR I will be usining unpaid intermittent leave for work (12 weeks to be used as needed). My benefits will remain but I will not be paid on my days off for this battle. It seems best for my situation and my company is all about supporting me through this and have offered to allow me to work from home when I choose. I have port placement tomorrow and have already decided I will not work Thurs and Fri this week. I feel I rushed back after the first time and it worked against me. Good luck with your decision...we all need to do what is right for ourselves.

  • BeckyJL
    BeckyJL Member Posts: 81

    Thanks all!

    Nanette, I've been having frequent headaches too. I read that this is not uncommon. I found taking tylenol, which usually does nothing for me, knocks them down pretty effectively. I'm not one to usually take pills for anything, but during this, I'm taking whatever is recommended and not worrying about it. I hope it helps. My headaches were bad. Now, If I wake up with one, I immediately take a tylenol and I'm usually good for most of the day.

  • mcbaker
    mcbaker Member Posts: 1,787

    I just ordered a steamer to keep sinuses and nose hydrated. Nanette doesn't have to worry about that as a factor. Once I get up and have my coffee any morning headache tends to go away. Paying close attention to air filtration and clean sheets in bedroom is a strong factor for me, and I suspect my allergies are going to get worse during chemo. I am also starting to close the bedroom door while sleeping. My air filtration machine is very noisy, but I am half-deaf, so it does not bother me. Others might have to go higher-end.

  • nanette7fl
    nanette7fl Member Posts: 412

    Mary Maybe I need to hook up my cool air steam thing in the bedroom...my sinuses are all stuffy...it's really mildew outside this winter from all the rain....no nose bleeds yet but for me they signal spring lol

    Becky I'll try taking tylenol more... I tend to wait until it's pounding I need to learn to be more preventative

    Ok hope everyone is well