Starting chemo August 2017 - would love some moral support!

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  • VL22
    VL22 Member Posts: 851
    edited August 2017

    R - glad things went well! I actually just got fitted for a wig. Truth is, I never style my hair - people will think I look nicer with a wig! But if I can look as great as these other ladies without hair, I'll be very happy!

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    VL22 - I am in the same boat. In a way I bet I will look better than I normally do! I do my hair and put on makeup about once a week and even then, my hair always ends up looking wild. I am actually excited about the wig! I just don't want to be hot though. I will get a halo wig too, to wear with caps.

  • Walkingintheclouds
    Walkingintheclouds Member Posts: 52
    edited August 2017

    Willow , thanks for sharing the tips... feel really weak today. But hope D symptom is relieving as I suspected ..

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2017

    Hi all!

    We're sure others will be making chemo plans soon and joining you here. So, we wanted to provide some helpful links, starting with the main Breastcancer.org site's section on Chemotherapy, including info on what to expect with chemo, types of chemo meds, and side effect management. Also, the Treatment Side Effects section is a great resource for tips to help manage any side effects you may experience.

    There are some really helpful key threads here in the Chemo forum too! Great tips and practical advice on the following discussion board threads:

    Also, last month's Chemo thread might be informative!

    Hope you find this helpful!

    --Your Mods

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi Willow22,

    I really like this thread, you all got so close in just few weeks. Even though I wish no one of us ever gotto know each other under these circumstances but it helps a lot to be able to talk to people who are going through the same thing.

    I live in Stockholm, Sweden, I am treated in one of our largest clinics that also performs a lot of research. We have public health care similar to one they have in Canada, the treatments are the same you get in US the downside with the system is probably savings, nothing is performed until absolutely necessary but the overall standard is high. My chemo treatment will be Taxol x 12 weekly plus Herception and today I met the nurse to discuss the side effects and a piccline installation.

    This clinic is not doing cold caps, my oncologist told me that they decided it was not necessary and did not had any value add. Well, one can discuss it for sure, because the county subsides up to approx 650 USD for the wig and artificial eyebrows and eyelashes plus repair cost. If I knew I could save my hair I would have not ordered a wig that I do not even know if I will be going to use, felt a little odd when I tried them.

    They do have ice-socks and mittens but I was told that they were used for those who are doing more toxic treatments. When I asked him does it mean that my nails will not be damaged by Taxol he said yes they might but still they cannot guarantee those for me.

    For nausea I will be getting Zofrax and Primperan and they say that salt licorice candy usually help but I hate those, one can use ginger candy as well. Imodium for diarrehea, salt and baking soda for mouth sores alt a mouth spray with sunflower oil one can buy at the farmacy.

    Resorb rehydration solution to replace electrolytes.

    If I will experience neuropathy I have to contact my nurse.

    They do not want to give me any cortisone in advance the first two times, they want to see how I will react to Taxol, instead they will be giving me Betapred (crotisone) and Loratadin (antihystamine?)30 min before the infusion and then a nurse will sit besides me and observe. In case I will have any reaction like feeling itchy, redness in my face, having hard to breathe then they will stop and give me more Betapred, wait and continue. This is the protocol for the first two infusions, later they will give me the med the day before. Do not ask me why, I do not know.

    That is all,

    Cherry

  • Tmoultrup
    Tmoultrup Member Posts: 4
    edited August 2017

    Hello. This is my first post and wanted to chime in. I had my 4th round of DD AC a week ago Wednesday. My belly is really bothering me too. It just grumbles and I have a lot of acid reflux. I feel better when I eat regular small meals. I appreciate the support everyone is providing each other.

  • Clearpath
    Clearpath Member Posts: 38
    edited August 2017

    Hello everyone - I just want to wish everyone a good weekend - I really enjoy the posted pics and I think everyone looks great. I bought a Jon Renau wig as well but I suspect I will be wearing baseball caps most of the time. Feeling ok after my second AC treatment yesterday but not much appetite - waiting for Senekot to work. Also a little hyped up on steroids. All in all not bad though - fingers crossed


  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Just finished my 3rd infusion 75% done on AC 🙌🙌🙌🙌 it was a smooth ride for me so far and I still have energy so I went to Trader Joe.

    Finally I got some south sores on the edge of my tongue so I ordered the magic mouth wash and it costs me $87! I have to submit my own claim 🙄🙄🙄 oh well I have no choice

    My next decision is how to approach taxol. Should I order my ice mitts and foots ??? Anyone have any thoughts

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Tmoultrup Welcome!! Are you going to do taxol next round or you don't need to do anymore??

    Clearpath you did the right thing last infusion I waited too long it was a lesson I learned. Now everyone told me just wait one day next day you need to proactive. Good luck to both of us

  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Paulette- would you say the SEs get worse after each treatment? Was #2 just like #1? I'm going for #2 AC this week and I just want to be prepared. I've written everything thing down and spoke to my MO and have a plan in place to minimize the side effects I had after #1.


  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Hi tmoultrup - congrats on finishing AC! Are you moving on to Taxol next? Please share as much of your experience as possible with us - it really does help

  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Hi all

    The echo went well yesterday, I am sore today from the pressure the tech was applying.

    Now all that is left is port and chemo on Monday! yikes!

    Hope everyone has a lovely weekend <3

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    VL22 - infusion 2&3 are getting better because you know exactly what to get. On my infusion 2 my appetite changed a little and I have started to use ensure to keep up my energy. This time on infusion 3 the first day was fine. I'm trying not to nap much during the day so I can have better sleep. I able to sleep five hours.

    Makeup - good luck to your Monday infusion, enjoy your weekend and eat your heart out

  • SusanGA
    SusanGA Member Posts: 147
    edited August 2017

    Walking I hope you feel better today. Special hugs for you

    Leatherette...you look great.

    Reedesides.. it must be good to be started. The sooner you finish

    Your experience and tips are so helpful.

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2017

    Good morning all: I hope that you all get to rest up this weekend if that's the plan.

    I had a question for those of you who have taken Lomotil. Were you able to function (work, stay awake, etc)?

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Sweetp - in my past history once Lomotil kicked in I can work and go out, but not sure about dealing with chemo D.

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2017

    Thank you Paulette,

    About your Magic Mouthwash, depending upon the ingredients, I've seen that the costs could be over $100. also based on quantity of the compounds. I hope that they pay for yours once your claim goes through.

  • Angelica25
    Angelica25 Member Posts: 26
    edited August 2017

    hi everyone,

    Just checking in. Just finished 6 Taxol out of 12. 1/2way done with chemo. Had an allergic reaction again. They had to stop give me more steroids and an antihistamine wait twenty minutes and start again. So frustrating. This is the third time. It happens exactly 7 minutes after infusion. Hopefully next week goes smoother. Other than the reaction the se are manageable.


    I found that AC was ok for me to but the se were cumulative.


    Paulette

    Did the baking sofa rinse not work for you?


    Leatherette

    Your wig looks awesome but you look awesome without it too. My hair is growing in with Taxol. I look like a twig head. When brave enough will post a pic




  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Good morning ladies,

    Hope everyone have a good Saturday! Let's talk a little about hair not on our heads, my nasal hair disappeared 😱 And other area ..... I just hope I can keep some of my eyebrows. 😓😓

    Sweetp - I am hoping my insurance will pay, I have PPO you know we call the insurance almost weekly to clear up our medical bills. It is an on going battle.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Angelica - baking soda works wonderful but this time chemo got edge of my tongue a little, to be safe I get my magic mouth wash. What kind of reaction did you get? So sorry to hear this, doc always said taxol should be easier and a mild infusion

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi Tmoultrup, welcome, I am also new here, I am starting Taxol x 12 on Monday.

    Cherry

  • Angelica25
    Angelica25 Member Posts: 26
    edited August 2017

    Paulette

    I'm sorry to hear that the baking soda rinse didn't work. My reaction was the beginning of anaphylactic shock. Throats closing, hard to breathe etc. MyMOTold be Taxol would be easy.

  • VL22
    VL22 Member Posts: 851
    edited August 2017

    Paulette - my nose hair was gone a week after my first AC treatment! Such a strange feeling. And I am religiously rinsing my mouth with the salt/baking soda combo and even though I have no sores or pain, I noticed today that my tongue is white.

    My teenage boys find humor in everything, thankfully,so we do a lot of joking about these SEs.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Angelica - wow that's scary that throats was closing up, I guess we never know what kind of SE we are going to have. Hope you are dealing it better today.

    VL22- is your tongue turned white of having white spots? Make sure it isn't fungus. I'm using salin on my nose to make is moist, just wonder should I do that

  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    All, I'm on Day 3 of #1 infusion of AC. Day 1 and 2 were unremarkable. A little tummy rumbling a teensy tired. Today I feel very very tired and a little naseous. If SE's are cumulative not sure how I will get out of bes by #4. Maybe some Ensure will give me an energy boost?

    Rebekah

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    rdeeside - I found infusion #1 was my hardest infusion, 2-3 aren't bad. I had my infusion 3 yesterday I actually feel fine. I found Day 4-5 are the worse days. If you lost appetite drink your ensure I even add protein in my smoothie with ice cream and banana. You will make it!

  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    hi Cherry, glad you joined us! My hospital doesn't have cooling mits/booties yet, so I put my hands and feet on bags of ice during my taxotere infusions. I wear socks and gloves, and if it gets too cold, add a hand towel between my skin and ice. The taxane meds can cause peripheral neuropathy, so I figure I'd rather be proactive and not wait to see if tingling starts. I try to keep a smaller ice bag on my nails, but that just slides off... maybe I'll try the suggestion of bags of frozen peas....

    Welcome Tmoultrup! It really seems like folks have either rumbling & diarrhea or constipation right after chemo, no happy middle ground 🙁 Hope you feel better soon!

    Makeuplover, glad the echo went well and you are on track for Monday. My hubby will scan the info and send it to you as a private message tonight. I haven't tried that before, so let me know if it comes thru ok.

    Rebekah, I am also more tired (day 2 of 2nd chemo). I didn't get the same steroid rush of energy or appetite yesterday (which has probably helped my stomach because I didn't feel good enough to eat that ridiculous hamburger patty like I did the first round, and then have diarrhea with gas/cramping), but I realized I am also not drinking near enough fluids this time either. Do you think your energy level is low as the steroids are wearing off?

    Take care all!

    Willow

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2017

    Biotene Dry Mouth Oral Rinse is working for me. Can use it about every 4 hour hours after meals, not before. No thrush. Got a bunch of little dixie cups, 1 TBS. and rinse for 30 seconds the spit it out.

  • WorryWartSuzie
    WorryWartSuzie Member Posts: 29
    edited August 2017

    SummerRain - I had the same diagnosis and identical treatment that you had. I was actually diagnosed 09/28/2016, and you were diagnosed on 09/20/2016. You described my exact experience, especially the Taxol. I think my fingers are getting better, too. Apparently, up to 6 months after chemo you can get expect improvement. Fingers crossed (if you can feel them), we're both neuropathy-free in a few months.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi Angelica25,

    I am having my first infusion on Monday and they will give me cortisone 30 min before they start with Taxol and then they will observe whether I will have any reaction. Of what you have described it seems you had it during your infusions. I never experienced it and I wonder If you kan describe more in detail how it feels. There are maybe no details but in case there are I really would appreciate If you can share those with me, I want to be prepared, thank you in advance Cherry

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