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...

Starting Chemo September 2019

Options
1101113151661

Comments

  • angieb92
    angieb92 Member Posts: 291
    Options

    Popping in to say “good night.” Had a good weekend. SEs are definitely manageable thus far. Next week is my day 7-11 “low WBC” time period. Hope the Neulesta did it’s job! My appetite comes and goes but I was able to scarf down a great burger today! Success!

    Good luck tomorrow, KV! You got this!!

    Hope everyone has a smooth week! Hugs!!

  • Brilee76
    Brilee76 Member Posts: 190
    Options

    Sorry I was awol for a few days. I had a little depression and didn't wanna post all negative stuff. Today makes day 5 since my first treatment. Here's the scoop:

    Positives:

    I never lost my appetite. As a matter of fact, never letting my stomach get empty seemed to have kept nausea away. I only took something for nausea twice and honestly, it was more to help me sleep than for nausea. The allergic reaction seems to have only made my skin red on my arms, face and chest. I never got a fever or any itch (other than my head). My worst days fell during the weekend where I at least had the option of staying home and taking it easy. The heartburn only lasted a couple of days and never got really bad. Don't drink ginger ale. I think it was the culprit.

    Negatives:

    Every time I eat I get upset stomach. My anus is really sore. I don't have runny diarrhea it's just soft and I go 3 or 4 times a day in small amounts. It seems hot for some reason like I ate something spicy but I haven't. I'm pretty tired and have a few aches in my shoulders,lower back, thighs and knees. My mouth feels dry and has a bad taste almost all the time regardless of the water I consume. My scalp itches. It's not out of control itching but I scratch my head at least once every half hour or so.I have trouble concentrating, focusing, thinking. I can be looking at an object but the name of it just won't come to mind.

    Overall, if I can get the upset stomach under control I'd feel alright. I was hoping the worst was over but this morning my stomach kicked into high gear. I've only been up for an hour and I've been to the potty 3 times. I have physical therapy this morning too! That should be interesting. lol I hope you ladies have a wonderful day!

  • SazzleD
    SazzleD Member Posts: 4
    Options

    Hi all!

    A bit of a late starter, my first treatment is due on Friday. After 2 surgeries, all arse backward - as is the Indonesian way - I'm disappointed to still be harbouring what feels like a sizable tumour.

    Had a mammogram today as my 'control' (no MRI available until Nov), not sure if that was worth it but it makes me feel a bit better to have something to compare after the chemo. Plan to visit the dentist for a filling I've been putting off tomorrow or Weds as well as sorting a bathroom mani/pedi. Moisturising profusely after showers and had a couple of head scarves delivered today which I have to practice tying. Is there anything else I should be thinking about sorting?

    I'm considering cutting my hair, but also clinging on to the hope that I might be lucky enough to hold on to it so don't want to rush in to anything!

    Staying positive so far, but secretly bricking it!

    Sarah 😁

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Welcome Sarah

    I've added you to our list. We'll all get through this together. When I was preparing for chemo, I shopped for things to help with Chemo side effects. Here's a list of what I got, and I keep most if it in a tote on my dresser so it's handy when I need it:

    • Biotene mouthwash - for dry mouth/mouth sores
    • ACT lozenges - for dry mouth/mouth sores
    • Claritin - For managing Neulasta bone aches/pains
    • Zyrtec - For managing Neulasta bone aches/pains
    • Colace - stool softener for constipation
    • Miralax - laxative for constipation
    • Senacot-S - laxative for constipation
    • Ginger Capsules - 500mg for nausea
    • Prevacid - for reflux/heartburn
    • Tylenol & Ibuprofen - for aches and pains
    • Germ/Surgical masks - in case I have to go to the ER, etc. where there are a lot of germs/sick people.
    • Hand sanitizer gel and wipes - I keep them around the house and office
    • Beanie caps for my head in various colors, soft cotton.
    • Wig

    I also bought small snack items to keep on my stomach to manage nausea, things like peanut butter crackers, instant potatoes, pudding, applesauce, soups, etc. Additionally, I bought some flavor packets to add to my water, because chemo makes water taste "off".

    Tracy

  • ange743
    ange743 Member Posts: 69
    Options

    Hey all, I hope everyone is doing well today. I thought my chemo was going to start October 3, but I got a call today and they had a cancellation so now it's September 26. 😳 Getting a PICC line in and meeting the Doctor tomorrow. As much as I want to get started, I'm terrified at the same time. Reading about everyone else's experiences has helped somewhat.

  • lms458412
    lms458412 Member Posts: 289
    Options

    I like that shirt, Tracy!

    AngieB92, so glad to hear the SE's are manageable for you!!!

    Thinking of you today, KV99.

    Maggie007 - Good luck tomorrow!!

    Bridget, I'm sorry to hear you're having a rough time. I had the upset stomach feeling, too. It lasted about 9 days, tapering off little by little, but it did go away. Hang in there a little longer and hopefully it will go away for you, too.

    Welcome, Sarah!

    All is well here. Had a follow-up with my surgeon today, physical therapy tomorrow, and trying to spend the rest of the time prepping the house before my next treatment, as well as spending quality time with my family. I had lunch at school with my little dude today. Taking him roller skating tomorrow. Trying to mentally prepare for the upcoming exhaustion and bone pain. UGH.

  • Monkey0299
    Monkey0299 Member Posts: 28
    Options

    Hello everyone,

    I have been reading all of your tips and posts, but this is my first post. This board has been amazingly helpful and informative through this awful process.

    My second chemo is this Wednesday. I am cold capping, but have already lost 50% of my hair. After contacting Paxman, they are recommending I continue even with complete hair loss to prevent the chance of permanent hair loss with taxotere. That has been a huge disappointment as the cold cap had given me some hope. I am wig shopping in Boston as I would like some semblance of returning to normal after my last chemo.

    Since you all have shared so much, I have a caution to share with you, which occurred after my first chemo Wednesday 9/5. On the Monday following my chemo, I got a tiny spider bite when my blood counts were apparently rock bottom (before neulasta kicked in.) By Tuesday, this was a full blown infection/sepsis requiring me to be admitted to the hospital in an isolation room for 2 nights. The doctors told me I could be in isolation up to 7 days. I was grateful to be released after two nights, My doctor and the chemo nurse had warned me to avoid crowds, etc during certain days in the cycle, but I don't think I truly understood the consequences of what could occur. I just thought you could get sicker than you ordinarily would have. Now I am taking the “avoid crowds" advice even more seriously than I did before. I understand what happened was incredibly random, but it was super scary.

    Thank you all again for all of the amazing tips. I had every single thing I needed when any SE arose.

  • angieb92
    angieb92 Member Posts: 291
    Options

    Welcome, Sarah!! TMH has a great list for you!

    ange743 - The quicker you start the quicker you finish! You can do this!!

    LMS - I would be fatigued with roller skating without chemo!! Have a great time!!

    Sazzle - Sorry about your cold-capping experience. I'm taking Taxotere too and my oncologist said he's never had an instance of someone's hair not growing back. I'm sure yours will! A chemo nurse told men it to shave my head as the stubble left over hurst. He said when it's time to cut my hair boy short and then let it fall out. My hair is really long so I'm hoping it will stay around a while

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Welcome Monkey0299

    Please feel free to jump in and post anytime, I’m sorry you had sepsis that’s terrible. My next treatment is also on Wednesday.

    Maggie

    Good luck with your first treatment tomorrow.


  • snaffle53
    snaffle53 Member Posts: 107
    Options

    I’m gearing up for labs tomorrow and MO appointment and 3rd AC treatment on Wednesday. I did not bounce back to a good energy level after the 2nd treatment. So, I hope my lab values are good and everything can go off on schedule Wednesday. I expect that I’ll just be tired for these last two AC treatments. I’m not putting much pressure on myself to do very much. I’m just trying to stay hydrated and eat enough.

    I so hope the 12 weekly Taxol treatments will be easier. But, I see that’s not the case for everyone. I am so thankful for my husband who is supporting me so much as we go through this. I don’t think I could face all this without him

  • lms458412
    lms458412 Member Posts: 289
    Options

    Ange743 - So you are with us in September after all! I was terrified, too, before I started. Take it one day at a time. You will power through this. Get lots of rest, lots of water, and get whatever help you can. We are here to help, too.

    AngieB92 - I'm not roller skating with my son! Just taking him there so he can hang out with his friends. I've skated with him in the past, but being extra cautious until my body bounces back after my final chemo.

    Hi Monkey0299! Glad you decided to join us. Thanks for the warning. I take my son to his soccer practice each week. I will make sure to wear long socks and pants and put on bug repellent. I don't see spiders there, but we have ants and mosquitoes.

    Snaffle, praying your numbers are good so you can stay on schedule!

  • ange743
    ange743 Member Posts: 69
    Options

    LMS458412



    I guess it was meant to be. 😜

    Thanks for the encouragement. I am totally terrified and don't feel ready, but when is anyone really ready for this?!? I also kind of feel a weird peace about just getting everything going.

  • snaffle53
    snaffle53 Member Posts: 107
    Options

    My hair, what was left of it after a buzz cut with clippers, was so painful, I had my husband shave it off with a razor tonight. Itchy???? OMG!!! But I can now rub my head without it hurting.

    I swear. The things we have to deal with

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Snaffle

    I seriously took a lint roller to the stubble on my head tonight. I want it all out, it's itchy....

    Tracy

  • angieb92
    angieb92 Member Posts: 291
    Options

    amge743 - hang on to that “weird peace”. It will take you through it! I had the same feeling and for the majority of my post treatment 1 time, I’ve kept it.

    Today, the dry mouth kicked into high gear! Complete reminder to stay hydrated! I love unsweetened iced tea (with stevia) and I have to remind myself that I cannot drink that all of the time! Water, water, water!

    LMS - I was giving you major props for roller skating but glad you are erring on the side of caution!

    Snaffle - praying that your numbers are good and you can be one treatment closer to finishing AC!

    I met with my surgeon today for a follow-up. If I stay on my current chemo schedule, my last treatment will be New Year’s Eve (although I will still have Herceptin after that) and I would be looking at mid-February for my double-mast. Just a small crack of light at the end of the chemo tunnel!

    I have lost a total of 23 pounds on the “Oh crap I have cancer” diet. I have about 60 more in “reserves” I can give. I always said I would lose weight and get in shape before I turn 50 (February 2020). I just didn’t think it would be like this.

  • Floridaliving18
    Floridaliving18 Member Posts: 52
    Options

    Hi

    Dairy Queen sounds so good. I am going tomorrow. I now have mouth sores. On first 6 days of AC +t. On Ac first. 2nd day they had me go for iv flush then nulasta shot that night. 2 very hot nights. Then just waking up couple of times not sleeping much and wake 4:00am last two mornings. Maybe too much sleep with the double mastectomy healing. Cabin fever today. Nauseagood today. Went to lunch on the water for relaxing today.

    I know I will loose my hair but it is a brittle mess. has anyone tried any good low ph shampoos?

    Thinking of you all praying for better days..

    2nd chemo on October 1st.


  • Floridaliving18
    Floridaliving18 Member Posts: 52
    Options

    Hi

    tmh and sniffle. I know I will have to shave my headsoon. Did you use clippers or just a razor.? Did not plan on itch head.



  • Floridaliving18
    Floridaliving18 Member Posts: 52
    Options

    Hi

    Brielee I hope your stomach feels better. They have me two different naseau meds. Mine was bothering me then I switched to zofron. Hope you feel better soon.



  • kv99
    kv99 Member Posts: 11
    Options

    Thank you all so much for the well wishes! They must have worked because yesterday, while insanely long, went well and I had no bad reactions to the drugs.

    Maggie, you can do this! You are on my same regimen. I'm doing treatments weekly for 18 weeks. I'm sure they went over it with you, but after accessing the port (went well with no pain, but I HATE where he put it right under my bra strap line - I think once it's totally healed it will be okay but right now annoying) I got 1) anti-nausea drugs, 2) anti-reaction drugs, 3) anti-stomach acid drugs, 4) Perjeta, 5) Herceptin, 6) Taxol, 7) Carboplatin. The cold cap killed 2 additional hours at the end and they dripped the Perjeta and Herceptin super slow so we were there from 9:15-6 pm. My chemo nurse was fantastic. The hand and foot icing with the Taxol was probably the most annoying part. Because the cold cap is so tight around my ears, and it doesn't go on til about 30-45 minutes before Taxol drip, I hadn't put in my ear buds first. So with my hands on ice and no ability to hear an ipad I couldn't do anything during the Taxol except close my eyes.

    I didn't mind the cold cap. I'm using the one provided at the hosptial - Dignicaps - so the nurse does all the placement for me which is great. For sure it got really cold - for the first hour you feel like you've pressed your head into the line of freezer frost freezers sometimes get, but no headaches and I got used to it pretty quickly. We'll see how it goes. My next-recliner neighbor at chemo is on same regimen and is on third treatment and doing well. I think it's after the fourth treatment that you see a first very heavy shed of hair. I have a lot of hair, so either it will work enough that you can't tell it's thinned too much, or it won't work and I'll move on to other options.

    Some stomach cramps last night but otherwise okay for SE so far. Nurse said they can be cumulative, ie by a month into this is when they all add up and really hit people hard.

    Brilee, hope you are feeling better. I have no appetite which is surprising bc I fasted Sunday and Monday, then very light meal Monday after chemo.

    Florida, I'm so sorry about the mouth sores. For shampoo, I just started Acure's simply smoothing coconut and marula oil shampoo bc I need a sulfate/everything free shampoo while cold capping. I really liked it and it actually lathered a bit despite being sulfate free. All their shampoos claim to have a pH of 4.5. My hair can get dry and frizzy easily, and since I can't condition it on cold capping days I was surprised it was pretty decent with just the shampoo.

    Angie, that is a crack of light to know your schedule for mastectomy. It will be nice to heal before summer starts. I'm sure this isn't the weight loss plan you envisioned! I've lost 5-6 pounds so far unintentionally. Pretty soon I'll be able to model for Wilhemena or Elite Model's division of cancer patients in the 49-51 age group. I'm sure they have that, right? Someone needs to show off beanie looks.

    Sazzle, I didn't realize you were in Indonesia, wow! I've always wanted to go to there :) but it sounds like the health care system is tough to navigate.

    Tracy and Snaffle, ugh on the itchy heads. Have you tried rubbing a little oil on your scalp? Not to shine you up but maybe a couple drops of marula or coconut oil would calm it down?

    Hi Monkey, welcome and so scary about your hospitalization. So glad you came out of it okay. That is seriously awful.

    hi and best wishes for a good week for all you amazing women.

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Floridaliving

    I used clippers, my MO didn't want me using a razor

  • Gamb
    Gamb Member Posts: 570
    Options

    Hi every one

    Looks like this is treatment week for most of us, my second a.c. is Thursday. Sounds like every one is doing good and that's great. I was told after my mastectomy to not get a bug bite on that side ever, good way to scare the crap out of you. Weather is still hot during the day, but the evenings are starting to could down. Somewhere in my house is a bottle of Biotene, but I can't find it so off to the store for another one. Hope all have a great day and every one does well on their treatments. God bless

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    yes a lot of us are having first, second, or 3rd treatments this week.

    Good luck to us all (((hugs))))

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Over the last week I've begun to retain water, and my ankles are swelling. I am elevating them at night, and have started increasing my water intake now that water tastes good again.

    I really hope this is a temporary chemo SE, I haven't had this issue since I was pregnant. :(

    Second TC is tomorrow, which means that my taste buds are going to abandon me again, I guess I'm just going to have to force water no matter how bad it tastes. I have flavor packets, but there's only so much of those I can deal with (don't like flavored water much).

    My BFF and her mom are taking me to chemo tomorrow, I hope we don't get run out of the chemo center for being too loud LOL

    Tracy


  • Floridaliving18
    Floridaliving18 Member Posts: 52
    Options

    🙏In my prayers for chemo repeaters. 💗

  • Floridaliving18
    Floridaliving18 Member Posts: 52
    Options

    Today mouth sores and now pumpkin pie gelato. Italian ice with ice cream 🍦 Sooo good.

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Floridaliving

    Ice Cream / Gelato - its a cure for a lot of things LOL

    In line with this, I think I'll treat myself to another Dairy Queen run tonight ahead of chemo tomorrow.

  • snaffle53
    snaffle53 Member Posts: 107
    Options

    I used clippers first. The 1/8” hair that was left became very painful. So, I had my husband shave my head with shave cream and a safety razor. He did a good job. No nicks or cuts at all

  • angieb92
    angieb92 Member Posts: 291
    Options

    Every day, I try to make a game out of what protein I am going to eat for lunch. It gets me hungry for whatever even though I can’t taste it really or I take four bites and get full. Today, the protein of the day was my favorite refried beans from a local restaurant. I couldn’t taste much but my digestive tract surely didn’t appreciate it! 😂 Oh well, at least I got some protein!

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Snaffle

    I love my husband, but I’m not sure I’m that brave

  • tmh0921
    tmh0921 Member Posts: 519
    Options

    Note to self, no re-fried beans 🤣

    Thanks AngieB