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Cytoxan Taxotere Chemo Ladies- February/March 2013

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Comments

  • gakristi
    gakristi Member Posts: 21
    edited March 2016

    Hi gang. So, like Cathytoo, it's been a while since I posted. Treatments 3 and 4 brought some really tough fatigue. Basically, my focus each day was get to work, make it through the day, get home, collapse. And weekends, I barely moved from the recliner. I am happy to say my last treatment was 2/10 and, after a month, I am returning to normal. I started radiation on 3/7. I have a few scraggly, short hairs on my head, and I'm feeling better. Still a little tired from time to time, but I have days where I feel great!

    After treatment 4, I did develop some moderate lymphedema in my right arm / breast. It hasn't completely gone away and I'm going to check with my insurance to see if they cover the physical therapy from a lymphedema specialist. The swelling isn't awful, but the pain feels a lot like carpel tunnel and the muscles in my forearm and upper arm are pretty tight. Added to that, some of my fingernails are trying to separate. I've trimmed them very short so as to avoid any situation that might cause them to chip or break into the nail bed.

    I'm almost there!! Chugga chugga... keep moving forward!

  • kiks1
    kiks1 Member Posts: 118
    edited April 2016

    Biscuits, just wanted to report back about migraines. Thank you so much for your encouragement before I started chemo. I am finally DONE! My last infusion was about 10 days ago and yes, the migraines are GONE! They stopped during the entire chemo duration. Like you, I had weekly migraines and was scared silly about chemo because I was afraid it would make it worse. Anyways, I am keeping my fingers crossed and hoping never to see them again.

  • biscuits
    biscuits Member Posts: 2,158
    edited April 2016

    Kiks1 that is fantastic news! So glad that you are done with chemo and made it through without migraines. My last infusion was just before Christmas and I still have not had a migraine, myself. It's been seven months and I am thankful and I hope this continues for both of us.

  • Ella1
    Ella1 Member Posts: 7
    edited April 2016

    Hey everyone...just checking in...its been three years!  How are you doing?  As for me, doing ok, working, kids, family the whole bit, I am thinking of quitting the tamoxifen...currently weighing the pros/cons. Thoughts anyone? Anyone else having SE that are pretty life limiting??

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited May 2016

    Bump <3

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited August 2016

    Bump

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    HI all!

    I am starting CT on 8/31/16, anyone else out there with me?


  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited August 2016

    Annie-B-7-14---- keep posting here and ask whatever you want to ask. You are not traveling on this adventure alone. I will check on you while you are traveling through chemoland. You can do this!!!!!!

  • kechla
    kechla Member Posts: 181
    edited August 2016

    I'm starting 8/25. 4 rounds

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    Thank you Melrose! Hi Kechla! we are in it together, 4 rounds for me, too, I will start just after you. Hugs all around!

  • thinkingpositive
    thinkingpositive Member Posts: 564
    edited August 2016

    good luck to you! Hopefully you will get through this without many side effects. I had TC x4 and had very few side effects. It really wasn't that bad. Very doable.

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    Thank you, ThinkingPositive! good to hear! am am scared of permanent neuropathy and all the other issues, but hoping that only 4 rounds means no permanent SEs, not from chemo at least...

  • thinkingpositive
    thinkingpositive Member Posts: 564
    edited August 2016

    Annie-b-7-14...no nausea at all nor did I experience any neuropathy at all. My hair did fall out after 2 weeks of first treatment. I was tired, everything tasted bad, the only thing I could drink was lemonade and Pepsi. Weird. Take the drugs they give you and you will be okay. The Claritin they tell you to take for the neulasta shots work. I experienced very little bone pain. I had 4 rounds but I wanted 6. I was a grade 3 with a node positive so I was willing to try for the six since I didn't do ACT. My MO was not on board with six. best wishes to you and post any questions !!!

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    Thank you ThinkingPositive! I hope, like you I have no neuropathy, nice to hear you were spared that. I am going to try Penguin cold caps for my hair. I have 3 and 5 year old daughters and I hope to look "normal" for them. Why wasn't your MO on board with 6? Just curious how these decisions get made, I feel very ignorant.

    :)

  • kechla
    kechla Member Posts: 181
    edited August 2016

    Annie, I am going to cold cap too. Hoping to avoid any permanent hair loss. I will also try icing my hands and feet to prevent neuropathy. Starting Thursday. Hoping my radiation burns heal up before then..

  • thinkingpositive
    thinkingpositive Member Posts: 564
    edited August 2016

    Annie...he was concerned with the side effects of six vs 4. I guess it could lead to the possibility of the side effects you mentioned plus unknowns. Not really sure.

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited August 2016

    Annie---- I had 6 rounds and that was what the game plan from the beginning. I did ice my fingers and toes during the Taxotere infusion. I have been fortunate that my hair grew back ( a little wavy now) and have not had any significant neuropathy. I know my treatment plan was put before the hospital tumor board so I know there was discussion about what chemo I would have and how many rounds. If you want to know why 4 instead of 6, ask your MO. It is a good question to ask.

  • thinkingpositive
    thinkingpositive Member Posts: 564
    edited August 2016

    I agree. I wish I had pushed for six but my MO said that standard protocol was for 4 and not enough info about long term side efects. I wish I had talked more about it with him but it wasn't until I had my third treatment that I heard others had done had done six. melrosemelros ... What was the reason you did herceptin?

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    I learned my chemo plan is 4 infusions not 6 because my oncotype score was 5, no nodes, and grade 1. Original plan was no chemo, but after mastectomy, it was revealed that majority of my breast was DCIS with 2 huge IDC tumors- so docs are guessing I have had cancer growing undetected for years...I "earned" chemo because of big tumors, but I earned only 4 rounds instead of 6 because the cancer seems to be quite lazy (I pray it is not only lazy, but gone now, post mastectomy). Kechla- good luck with all the ice! I am right behind you, Icing all extremities and bringing popsicles too, to prevent mouth sores....maybe I should bring some heating pads for the rest of me :)


  • minustwo
    minustwo Member Posts: 13,389
    edited August 2016

    Annie - frozen peas in zip loc bags are easier to manage for fingers & toes. You just won't want to eat then after they've been back & forth 4 times. I had 6 rounds with Herceptin & Perjeta added,and the neuropathy started very mildly after round 4. If I'd quit then it probably wouldn't have been a permanent side effect. Although I did get neuropatny, I didn't lose any of my nails since I iced.

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    thx MinusTwo! frozen peas it is!

  • kechla
    kechla Member Posts: 181
    edited August 2016

    how many bags of peas will I need? Great idea

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited August 2016

    ThinkingPositive- I did the Herceptin under a clinical trial. Herceptin is part of a drug protocol only if the HER2 is +3. Currently those with HER2 +1 and +2 do not receive Herceptin.

  • minustwo
    minustwo Member Posts: 13,389
    edited August 2016

    Kechla - Its useful if your infusion center has a freezer they'll let you use, or if you have to take your own cooler. I bought 4 huge bags and separated them into 8 zip loc bags. You're supposed to ice 15 minutes before Taxotere, all during the infusion (which was 60 minutes in my case) and 15 minutes after. I needed to change out the bags 1/2 way through.

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited August 2016

    My treatment centre provided frozen mitts for my hands. I found I did need to change them during the infusion.

    They were also happy to make up little bags of ice cubes for my toes. Was great that they were supplied. One less thing for me to worry about. Good luck to everyone beginning the chemo phase.

  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 37
    edited August 2016

    Hi Smurfette26! do you happen to remember a brand name for the frozen mitts? just wondering if I could find them on amazon....

    thanx!

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited August 2016

    Sorry Annie-B-7-14 I don't. I really didn't look to be honest. I just held out my hands and a nurse put them on.

    I was given a pair of thin cotton gloves to wear under them too. Don't want frostbite I suppose.

    Your chemo centre doesn't have them?

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited August 2016

    Annie--- This is a reprint of what I wrote about icing on this thread. Hope it helps you...

    With the okay of your onco, one can ice their fingernails/ toe nails to help prevent nail damage and possibly help with neuorpathy. It is fairly simple. Attached below is info that I posted previously . I found out about the icing on the Chemo Discussion threads and asked my onco if I could do it. She said it would be fine and but said she didn't know if it would help or not. I did ice and fortunately have had minimal nail damage and neuorpathy. I know some gals don't ice and are just fine while others who didn't ice wished that they had. The first minutes of icing are not comfortable but one gets used to the coldness after a while. I usually wore the same outfit to every chemo--- leggings, a men's undershirt, a pullover hoodie sweater, socks and boots. When it was time to ice, I would put on some fleece running pants over my leggings, wear a fleece jacket and get a warm blanket for the infusion center warmer.

    Here are some tips to help you with icing.

    ( Sorry everyone--- this icing is a repost of info )
    FOR THOSE ICING NAILS : Always clear anything you want to do with your oncos. You will need to clear it with your onco about icing since not all oncos will allow icing during the infusions. The Taxotere icing time period is 1 1/2 hours ( 15 minutes before the infusion, 1 hour during the infusion and 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion). At the suggestion of my onco, I am using clear nail polish on my nails to help keep them strong and also icing the nails to help prevent nail damage which is a side effect of Taxotere. She suggested that use Sally Hansen Strong As Nails Clear Polish but I switched to Essie polish since it doesn't chip as much as the Sally Hansen brand. Essie polish costs more but for someone like me who never used nail polish before chemo, the fewer times I have to apply polish the better. I don't mani/pedis but some do. I'd rather avoid the germ issue at nail salons and taking of a chance of getting nicked.

    ICING :

    • Time period for icing- You will for 1/1/2 hours in total= 15 minutes before the Taxotere infusion + 1 hour during the infusion + 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion).
    • Ice- You can use frozen peas in quart size ziploc bags marked "Do no eat!!!" and reuse those bags of peas. Some have used small reusable/refreezable ice bags you can get at the drugstore in the first aid department. I opted to use ice. I have an ice tray that makes small rounded bottom circular ice. I tried the peas and decided I liked the ice better because I thought it stayed colder longer. My infusion center has ice available for me to use if I want to use it. I always bring an extra bag of ice just in case I need it.
    • Transporting ice to infusion center- I used a cooler with a freezer pack plus take extra infusion ice bags.
    • What to put the ice bags in- That is a personal preference. Some just put the ice bags on their feet and wrap a blanket around them so the bags don't fall off. Some use insulated lunch bags and put the ice bags in those. My hands and feet are small so I'm using some neoprene wine cooler bags that I bought at Target for $6.99 each. I figured I could use the wine bags later on. I'm still able to hold an insulated mug so I can drink really cold water and eat ice during the infusion. I have pretty small hands/feet which explains how I am able to use those Neoprene wine bags.
    • Hand & Feet Protection- I wear thin sports socks on my feet when I ice the toes. The socks keep the rest of my feet warm during the icing. On my hands, I wear a pair of knitted wristlets/fingerless gloves to keep the rest of my hands warm. If you don't have knitted wristlets, you can make some from men's socks by cutting holes in the toe area. Some people take their feet/hands out of the ice periodically; however, I don't do that.
    • Process- I let the infusion nurse know that i'm icing so we can coordinate when I should start the icing. Once I know when I'm going to start the infusion, I put the ice bags in the bottom of the Neoprene bags. I put the ones on my feet first and adjust the ice bags so my toes nails are covered. I then put the ones on my hands on and adjust the ice to cover my fingernails. My husband helped me with this process.

    Tips to Help Take Care of Your Nails

    • Keep them short
    • Use a polish with strengthener ( clear if your onco does a nail check at your appointments)
    • Learn to not use your fingernails as tools----- No more opening cardboard boxes/cartons with your thumbnail
    • Do not use your fingernails as staple pullers
    • Use garden gloves if working in the yard
    • Use rubber gloves when washing dishes or using cleaning products around the house
  • Ella1
    Ella1 Member Posts: 7
    edited August 2016

    For all those going thru chem now....thinking of you... a couple tips...if you get Nulasta ask for the injection to be done slowly, more comfortable that way,

    Claritin does help with aches and pains,

    hydration is a big deal (I had to go in for hydration for 3-4 days after each round)

    and if you don't feel right speak up and be insistent! 

    Enjoy the buzz of the dexamethasone but watch out for the come down...it can be an emotional ride.

    Keep a journal of how you are feeling so you can remember what to tell the doc ...

  • minustwo
    minustwo Member Posts: 13,389
    edited August 2016

    I was advised to put black or navy polish on my nails to block as much light as possible - then take it off the 2nd day. I only did that one time since it got into my pores & cuticles, etc. Ugh.

    As for Nulasta, I requested they give the shots in my stomach and avoided a sore arm.

    Melrose - good to "see" you.

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