Starting Chemo in October 2015

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  • Andraxo
    Andraxo Member Posts: 410
    edited December 2015

    Hooray Tshire!! I failed capping, but have been cheering for you as I see beautiful you and your posts on the capping blog!! Yay!!! :)

    Sounds like a lot of us had an ass kicking with round 3 of TC (or AC). I have 3 more to go and still feeling crappy from last one (and getting the weird SOB and prolonged nausea that jclc83 is getting), but you all know me by now...I will continue to exercise no matter how crappy I feel. It oddly seems to help which probably sounds counter intuitive to many people, but I used to train hard and exercise even more before chemo so it is just part of my lifestyle. Like LivingThis, I'm still working in between all my txs, but not seeing patients directly one-on-one since no neulasta and my white counts get scary low.

    So wish I only needed four rounds. It would nice to be done these dense doses next week.

    Hope you're starting to feel better Homeschool!

    Hope everyone still had a great weekend, despite any lingering side effects!

    xoxox

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited December 2015

    Hi ladies, I don't start chemo until January, but have been reading your posts for information.

    NCSue, your post about naming your white blood cells cracked me up! My WBC runs low due to lupus, so I'm concerned about that spect of treatment.

    Have a good day

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  • AmyBeader
    AmyBeader Member Posts: 90
    edited December 2015

    Welcome LoveMyVizsla!

    My 3rd round is kicking my butt. Symptoms started soon and are more intense. The good news is my counts have been really good, so I guess the Neulasta is working.

    I had heard from another lady going through this that the Chick-fil-a chocolate shakes were pretty palatable, so I tried one-definitely drinkable! I am finding dairy and potatoes to be the only palatable things this past week.

    Here's to minimizing the SEs this week. :)


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  • Jclc83
    Jclc83 Member Posts: 246
    edited December 2015

    Round 3 definitely kicked my butt. It's all I can do walking to the mailbox and back. I walk like a 90 yo sheesh. Round 4 later this week. Can't imagine being any more exhausted or out of breath. But somehow I manage to get things done around the house little by little.

    I've been craving spicy foods. The week after infusions Popsicles taste the best. Maybe that's why I haven't had mouth sores.

    Happy Chanukah to everyone that celebrates.

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  • PatRN10
    PatRN10 Member Posts: 332
    edited December 2015

    Jclc83, I am having 4 rounds of TC total. This Thursday will be my last. So glad no Neulasta this time.

    Living this, My white count was also elevated on the day of treatment but they explained the steroids we take before treatment will do this and still recommended Neulasta.

    I also had some shortness of breath and this weekend had swelling in my ankles and feet like I have never had before. Anyone else had swelling in the lower extremities? I did have some chinese food which probably didn't help but I have neser reacted this way before.

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  • ncsue927
    ncsue927 Member Posts: 57
    edited December 2015

    Happy Monday, everyone. I had my labs this morning...white cells are up and Hgb is falling, but still okay to get my sixth and final AC tomorrow. I will be cheering when that is over. For those of you behind me, number 4 AC I felt great. I couldn't even tell I had received an infusion. Number 5 was a whole different story. That one hit me hard and I am just now getting back to sort of normal; just in time for number 6. I'm hoping this one isn't as bad. We will all get through this and hopefully on to something not quite so difficult.

    You know, it's bad enough that we have to go through this crap, but you would think that the universe would have just a little bit of mercy and compassion on us in all the other aspects of our lives. But nooo.....I'm living in an old house that needs so much work and just when I get to the point in my life I have some money to do that, cancer. Now all the money goes to medical bills. And when I went out on disability, I lost my company car and my personal car is a 12 year old Jeep with 250,000 miles on it, which I just sunk over $700 into. And today on the way back from labs, the engine light came on again. So to the universe, I say, "Bite me! I will rise above this, too."


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  • igay1ord
    igay1ord Member Posts: 193
    edited December 2015

    Welcome LovesMyVizsla! Nice to meet you, but sorry it's under these circumstances! Jump in and feel free to ask any questions. We'll be glad to answer the best we can!

    AmyBeader...That's about the only things I can eat for the first 5-6 days after my chemo! Dairy and potatoes! The only drink which tastes normal is milk with ice in it! My husband laughed at me the first time I realized that milk and ice cream tasted normal! I was just as excited as a little kid! Another thing you may try is a Mocha Frappucino from Starbucks! It also tastes just like a chocolate shake (with a little coffee kick)! Oh, and I did find that salsa and chips taste pretty normal! So it's no wonder I've gained a few pounds in the last 6 weeks!

    I went to my Look Good Feel Better class today. Had a really good time with 3 other women. I don't usually wear a lot of makeup, but I'm taking my bag to work and letting my best friend raid it! It's a good thing I'm not a very vain woman! Between losing my hair and not wearing makeup, I've just about pushed my 80 year old very vain mother over the edge!

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited December 2015

    The cancer center called today to move my appts around for next Tuesday. Apparently, my MO decided to add perjeta to my upcoming combo of taxol and herceptin. I don't do well with changes in plans so I about had a panic attack. We had went over and over the side effects of taxol and herceptin and now I have no idea if adding perjeta in there will change how I feel. I researched the cleopatra trials and I am sure that is why I am going to get perjeta also, but I just think it is strange that it was never discussed before and out of the blue they are adding it. Apparently, this will also make my chemo infusion last about 6 hours. I'm really nervous.

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  • igay1ord
    igay1ord Member Posts: 193
    edited December 2015

    homeschool...did your MO make these changes and not discuss them with you beforehand? That would kind of upset me too! Why change things midstream? Don't have a panic attack until you can talk to him/her. As for the 6 hour treatment time, I'm usually at the center from 8:30 to around 3:30/4:00 so I can understand the frustration about the time. It's an all-day event for me, too. Hope your can get a better explanation from your MO tomorrow.

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  • ncsue927
    ncsue927 Member Posts: 57
    edited December 2015

    Last AC today!! WOO-HOOO!!!!! Now to get through the next two weeks of recovery.

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited December 2015

    Congrats ncsue927. Cheering for you


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  • homeschool4us
    homeschool4us Member Posts: 255
    edited December 2015

    igay1ord, Yes, my MO made the changes without even mentioning perjeta would be a possibility. I've researched it and it seems like the smart thing to do, it's just odd to have that thrown at you over the phone. I didn't call today he cause honestly, I didn't want to discuss it on my "good" week where I try to forget how bad my cancer is.


    Yay, ncsue! I am on day 7 post last AC and have a little fever, but otherwise have felt great today. Do you move on to another kind of chemo or are you done?

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  • ncsue927
    ncsue927 Member Posts: 57
    edited December 2015

    Homeschool...yes, I move on to Taxol. I think I will be starting the week after Christmas. I have an extra week before I start so that I can get a flu shot before I go back to work. Which works out really well as that is Christmas week. And my son and his fiancee are coming from NJ. Have you started Taxol yet? I talked to another lady at chemo today. She started Taxol three weeks ago and she said she is feeling so much better. She even looked like she felt better. It was encouraging.

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited December 2015

    hi ladies!

    Hope all of you are well this evening.

    Just wanted to update you on my recovery after first Taxol last Friday. No reactions in the chair or for the rest of the evening. I felt really good. Saturday felt good half the day, then fatigue set in, but nothing like AC. Sunday was probably my worst day, but still nothing like AC side effects. The only side effect i currently have that set in on Sunday morning was bone aches, in my hips - feels like when you have a fever. Advil works best on me after trying Tylenol all day Sunday. I havent taken Advil since 10:30 this morning, so maybe that side effect is gone? I am pretty happy with this lack of side effects, sort of makes me feel like I can see a faint light at the end of the tunnel, only 3 more Taxols to go!

    Kim

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  • Andraxo
    Andraxo Member Posts: 410
    edited December 2015

    Hooray ncSue - last AC!!

    Hooray Kim for little side effects on Taxol!!

    Woohoo! :)

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited December 2015

    ncsue, that s encouraging to hear! I start Taxol next Tuesday.

    Kim, thanks for the detailed update on how you have felt after taxol! I appreciate knowing what I might expect to feel.

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited December 2015

    all the best ncsue and homeschool on starting taxol, i do feel so much better! If you have specific questions, feel free to message me

    Has anyone else experienced crazy fast fingernail growth while on chemo? My nails have never grown this fast, and usually chip and break far before they get this length.

    I also still have my buzz, never did lose all my hair, looking forward to seeing if i am one of the lucky ones that starts growing back before finished taxol. One can hope right?

    Kim

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited December 2015

    Just wanted to jump on the bandwagon here...my 3rd chemo was a week ago and it pretty well kicked my butt this time, too. My counts are good, but I still ended up in the ER Friday night due to high fever. After assuring that I wasn't septic, they gave me some Rocephin IV and sent me home to recover from whatever it was.

    The biggest side effect this time is the fatigue. I mean, when it hits I could lie down right in the road, I'm so tired. But not sleepy! Oh, no. I'm revved up so much that even my Ativan and Xanax aren't making a dent in it. Some nights I'm up until after 2am. Thanks, chemo. At least the bone pain is bettr this time. I guess the Claritin is working. Last time my jaws and facial bones ached for 2 weeks. But this time, no pain other than normal arthritis pain. Manageable.

    Found out today that I won't need any radiation following chemo. Of course, I'll be having BMX and a hysterectomy, due to gene mutations. Grrr. But the doctor was willing to change my next (final) chemo from 2 days before Christmas (which would pretty much ruin Christmas) to the Monday following Christmas--win! So, New Years will be sucky, but I guess I'll just stay home, drink ginger ale, watch Les Mis and take my temp, LOL.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited December 2015

    Congrats to being done and moving on to the next phase of treatment!

    Do any of you know the dose of steroid they give you before your chemo? I had to take prednisone for another issue and want to know how much of a dose so I can know how I will feel on it. I can hack 20mg, but 40-60 makes me pretty jittery, not mention sleepless.

    Also, do you do the cold treatments for your hands and feet on.y for the taxol, or for AC too?

    Thanks ladies

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  • igay1ord
    igay1ord Member Posts: 193
    edited December 2015

    Kimmer...Yes, my nails are growing fast & furious! Both on my hands and feet! And my hair seems to be growing back too, even though I'm only on TCH #3 and have 3 treatments left!

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited December 2015

    hair growing back already igay1ord? Yay! And yes even my toenails are growing furiously fast. Kind of excited to wear nail polish on my fingers to my husband's work christmas party this weekend!

    Kim

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  • Andraxo
    Andraxo Member Posts: 410
    edited December 2015

    LoveMyVizsla - I get 10mg of dexamethasone via IV right before chemo starts. I also take 4mg of dex twice daily on the day before and after chemo. 10mg of dex feels like 60mg of prednisone to me (I've also taken prednisone for an allergic reaction - makes it hard to sleep well on either). Ok, so I just looked it up....and 10mg of prednisone is equivalent to 1.5mg of dex, so you can calculate it out. :) I am also using cold mittens and slippers starting with pre-chemo meds and until the end of chemo (approx. 3 hours) but I am on TC chemo, not AC or taxol.

    Kim and igay1ord - My hair oddly stopped growing this round and the stubble thins out more every round as expected (getting more and more bald). Planning to shave it after new years to get a henna design on my head - yay! I'm only half way through my 6 rounds though, but it still has me concerned about permanent hair loss. I haven't noticed my nails growing any faster or slower than before chemo.

    Mustlovepoodles - hooray no radiation!!! I had B mastectomies before chemo for a <1cm L tumor, but still need radiation for my axilla since I had several positive nodes. Will elect for hysterectomy and likely oophorectomy in the next year or two simply because I am higher risk for cancer since I didn't have children.

    Happy Wednesday everyone! :) love and hugs to you all! xoxo

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited December 2015

    What does the steroid do for chemo or those taking chemo

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  • Jclc83
    Jclc83 Member Posts: 246
    edited December 2015

    Some chemotherapy drugs cause excess fluids to be retained. Steroids are given to reduce swelling and weight gain. They also help with pain. They can cause jitteriness and palpitations in higher doses. But it's recommended to take them the day before, the day of and the day after chemo. Hope that helps

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    Thanks Jan.

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited December 2015

    Kimmer, I too have had fast nail growth. I assume.it will stop with taxol?

    Mustlovepoodles, I hope you are starting to feel better now?

    Lovemyvizsla, the icing hands and feet.is only for the taxenes. So you don't need to worry about that until taxol or taxotere. You can try suckimg.on ice during the Adriamycin part of AC to prevent mouth sores. I did it though and still get.awful mouth sores.

    Before AC chemo, they gave me 3 decadron to take (12mg), then I took 8mg the next 2 days, and then 4 the next 2. I only had the 4mg days and 5 because they thought stepping down may help since I felt so awful after round 1. I think I felt so awful because I had a miscarriage 2 days before chemo. It is a high dose and does make most people gave a hard time sleeping. Didn't make me jittery though. Really cleared my eczema up as a positive! My MO amd nurses said the steroid during AC is to control nausea. During taxol it is to control allergic reaction.

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  • homeschool4us
    homeschool4us Member Posts: 255
    edited December 2015

    Andraxo, I think everyone's body just responds differently, I don't think you'll experience any permanent hair loss. I admit that has crossed.my mind too though.

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  • AmyBeader
    AmyBeader Member Posts: 90
    edited December 2015

    I take 8mg of dexamethasone 2 times a day the day before, day of, and day after chemo.

    Andra-I would love to see your henna art! I was considering a tattoo before my hair grew back, but I don't really know what I would want or where I would go. :)

    I am finally starting to feel better after this round-day 9. Next one is Tuesday before Christmas. I considered asking to delay until the monday after, but I really want to get this over! It's really hard to plan things when you don't know how long you will feel yucky, but there is a wine tasting in February that we signed up for anyway. It is the week before my last round and my birthday. Hope I can actually taste it!

    I am doing cold mitts during the Taxotere, but I still have some neuropathy each time. This time it is lasting longer, and I'm kind of worried about it. Just a bit of numbing in the fingertips, but still....

    I have 2 links to share. First is the chorus in Italy. It was published publicly, so I can share!

    https://youtu.be/vwY9hJYTQew

    The second is new guidelines for breast cancer survivorship care:

    http://jco.ascopubs.org/content/early/2015/12/07/JCO.2015.64.3809.full

    Hope everyone is having good days :)


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  • Andraxo
    Andraxo Member Posts: 410
    edited December 2015

    I've read that there is a 6-8% chance of permanent hair loss with Taxotere....which is why I sometimes get a little concerned, but thankfully my concern doesn't last long. Don't want to waste energy worrying about something else right now that I have no control over.

    Excited I still have eyebrows and eyelashes! yay! the brows thin a little each round, but they are still reasonable.

    Round 4 is tomorrow (assuming my labs are OK) but I don't quite feel ready. Still having nausea from last round especially right after I eat something sweet, but it's not enough for me to be willing to take any meds for it. Everything still tastes weird too.

    Wow Amy - that choir performance was beautiful!! Thank you for sharing with us! :)

    Andra xo

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  • igay1ord
    igay1ord Member Posts: 193
    edited December 2015

    Amy...beautiful performance! Thanks for sharing!

    Andraxo...I have a HUGE sweet tooth, but I've noticed too that since I've started chemo that too much sugar can make me kind of queasy. Thought it was just all in my head! I also still have my brows/lashes, but the brows are finally starting to thin in some areas. Round 4 for me will be Dec. 21st...which means Christmas is going to be rather yucky.

    LoveMyVizsla...I see your surgery is today! Hope all goes well!

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