Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Chemo starting January 2019

11112131416

Comments

  • kaylajane
    kaylajane Member Posts: 39

    rrshannon,

    sorry to hear about your nails. I have some discoloration but none are loose....yet.

    Any dry eye sufferers (I think from taxotere or carboplatin??, hoping not Herceptin). I think mine is getting a little better??, but still hard to focus to read in the morning. I asked my MO how long that would take to go away, he said (typical MO remark), "it varies". So curious to hear about anyone else's experience.

    Is anyone else trying Rogaine for hair regrowth and hopefully head off thinning with anastrozole? My derm said OK, so I think I will try it.

    Enjoying my first weekday (except for memorial day) off in a month! And a beautiful June day it is.

    Anyone else (who's still here) on Herceptin for the rest of the year?

  • alden722
    alden722 Member Posts: 22

    I have 3 more rounds of Abraxane (i had an allergic reaction to Taxol), and am scheduled for a double mastectomy in July. Anyone here have a double mastectomy with reconstruction? Just curious how it went. I have a little foster son and I won't be able to carry him or pick him up for 6 weeks! He's not gonna like that....

    Praying you all weather these awful side effects and come through on the other side stronger and more beautiful than ever!

    Also my hair has started to regrow while on Abraxane, I joke that i look like a baby duck. So maybe I will have some actual hair by the fall!

  • Mncteach
    Mncteach Member Posts: 241

    Alden722, I had double mastectomy with reconstruction but prior to chemo. Everything went pretty well. Had an issue with healing and it was difficult as it was really my first major surgery! Ask any questions and I’ll try to answer the best I can

  • Jenkins00
    Jenkins00 Member Posts: 99

    Hello!

    Just checking in as its been almost 3 months since my last infusion. Feeling pretty good. My WBC and RBC are still low but doctor said those take a while to recover. All of my other blood work came back great. Back to walking 30 minutes 5 days a week which is nice. I'm going to be participating with PACES Research Team at UT Southwestern. The study is about interventions that will help breast cancer survivors learn how to better incorporate physical activity into their lifestyle. Otherwise life is crazy as usual for my family. My hubby tore his meniscus and will be having surgery. Once he is recovered then it will be time for my surgery. Plus we are dealing with major plumbing issues in our house. I started to get really stressed about it but then my husband reminded me why? We both have dealt with cancer and beat it what is stressing going to do NOTHING! I am so thankful for him. Anyway, I've been going topless at work and no not that topless. I haven't worn a hat, wig or scarf in a month. Feels good and everyone loves it! I do too. Hope everyone is doing well!!! Hugs!

    image

  • kaylajane
    kaylajane Member Posts: 39

    Jenkins,

    I love your topless look! 3 months, eh? I’m 2 months from last infusion, so hoping my hair looks that cool (and that long!) in another month.

    One week of Arimidex now, seems to be going OK. 🤞

  • piperkay
    piperkay Member Posts: 132

    I think we're at about the same time out from last chemo, Jenkins. Mine was March 21. I've been going topless too since the weather warmed up. One of the best things about this hairstyle is not having to check it before your picture is taken. Haha! Anne

    image

  • paloma1211
    paloma1211 Member Posts: 95

    Hello ladies! Hope you are all feeling well. I’m in the February chemo group, but have been checking in here from time to time as well. So excited to see you with hair! Looking forward to that for myself in a few months. You look terrific, Jenkins00 & PipkeeKay!

    I finished TCHP x6 just a week ago, and I am wondering if there are anymore “surprises” from chemo that I should be expecting. As in, things that happened a few weeks after you finished your last round. I’m glad this part is over, but I’m wondering what recovery looks like.

    Thank you in advance. Wishing us all good health and happiness!

  • Jenkins00
    Jenkins00 Member Posts: 99

    Paloma1211- The surprise for me was fluid retention and how bad it would be.

    Three months out and I caught some crud. Sore throat, cough and drainage so I sound awful. Home today resting. I know my immune system is still compromised so I hope I can kick this quickly.

  • paloma1211
    paloma1211 Member Posts: 95

    Thank you, Jenkins00. My MO did warn me about possible fluid retention. How long does it last? Hope you can kick that bug sooner than later. Get well soon

  • Jenkins00
    Jenkins00 Member Posts: 99

    Paloma1211 - My fluid retention lasted about 4 weeks.

    I finally kicked the crud . Anyone dealing with major fatigue off and on? Mine comes in waves. Plus it doesn't help that I have hot flashes at night. I would just love to sleep a straight 6 to 8 hours!

  • paloma1211
    paloma1211 Member Posts: 95

    Thanks Jenkins00! I’m about 4 weeks out and it has finally started to recede. I had gained about 19 pounds from my post chemo low. I’ve now lost 11 of that. I think I have about 4 or 5 to go before I’m back to a normal weight.

    The hot flashes are killing me. Someone on another thread mentioned acupuncture could help. I’m up twice a night anyway to pee, so I feel you about wanting 6-8 solid hours of sleep

  • rrshannon
    rrshannon Member Posts: 59

    Hi all, hope those with fatigue are getting better. I have been on steroids since my DMX April 15, finally got my energy back last week but had have another surgery(thyroid this time) so my energy dropped again. My weight had stayed the same throughout but I gained 5 lbs in a week a couple weeks ago and it has leveled again not sure what that was about but maybe the increased energy along with 4th of July celebrations :)

    My nails continue to be an issue losing two more toe nails. The fingernails I think have finally grown out that they have stopped breaking and falling off and all the new growth is healthy. My hair is finally just getting long enough to start to wave, the curls will be coming soon.

    Sorry for those with hot flashes especially now that it is heating up. Wishing everyone the best.

  • alden722
    alden722 Member Posts: 22

    Question, I finished my Taxol in June, but had hair start growing in May, but it's not coming in everywhere, and I look like a balding old man. Anyone have issues with the first downy fluff growth not coming in everywhere?

  • Jenkins00
    Jenkins00 Member Posts: 99

    I did. I had the peach fuzz growing and then it was patchy. I also lost my eyebrows and eyelashes a month after I finished chemo and that made me look even worse. Now I have hair growing like crazy! More peach fuzz than normal on my face. Not sure if its the hormones.

  • piperkay
    piperkay Member Posts: 132

    Alden722, I was actually surprised that my hair grew in pretty evenly. From everything I was reading and seeing on some other people, I thought it would grow in patchy. So I'm guessing it's just different for everyone. Plus, I had heard for years and years that for some people it's normal, meaning without any chemo, for hair on the head to grow unevenly.

    Paloma1211, I too am suffering from hot flashes! Ugh!! They are so awful. But I think they have decreased a little in frequency over the last few weeks despite the heat. A friend recommended the brand Soma for a sleepwear line called Cool Nights. I bought a bunch of tees and shorts and they are amazing! Luckily I caught their semi-annual sale and got them pretty cheap. And soooo comfy it's almost OK to be up half the night!

    Rrshannon, I was having a pedicure a couple of weeks ago, and one of my toenails just popped off when the nail tech was filing it! She didn't bat an eyelash and just went a little more gently for the rest of them and put a little polish on the hardened skin where the nail used to be. And it hasn't come off yet. Haha! Several of my fingernails disconnected from the skin underneath, but none has fallen off and they're mostly grown out now, but a little thin.

    Have wonderful weekend, all!

    Anne

  • rrshannon
    rrshannon Member Posts: 59

    PiperKay my whole family is grossed out by the falling off of nails :) I saw a podiatrist today because my big toes were so bad.I wish I would have gone sooner. They were only half on. He cut them for me and gave me some anti fungal.

    I got my pathology back today from my thyroid last surgery last week. My left thyroid was removed and had a 1.1 cm tumor as well as multiple micro lesions. :( going in Monday to have the right side removed and lymph nodes tested.


  • Jenkins00
    Jenkins00 Member Posts: 99

    Hello! Hope everyone is well. Just checking in. Almost three weeks out from DIEP/oophorectomy surgery. Still have one pesky drain. Overall doing well getting a little stir crazy. On another note looks like I’m getting chemo curls. Never had curls so not sure what to do. Right now not worried but when I go back to work will have to figure out how to style it.

    Take care! Hugs!

  • kaylajane
    kaylajane Member Posts: 39

    Jenkins,

    How long was your hair when you could see the curls? Mine is only 1/2 inch long, 4 month post last TC infusion, no sign of curls. Debating wether to try coloring it, since it is quite white, with a few darker gray streaks.

    Still trying to nurse my dry eyes, maybe they are improving a tad, or maybe I am imagining that?

    Hope everyone is doing well. I am still doing Herceptin every 3 weeks till December, but that is a breeze

  • piperkay
    piperkay Member Posts: 132

    image

    Hi Kaylajane,

    I started getting the chemo curls as soon as the hair was long enough to bend, which was about a month ago - 4 months out from last chemo. They are somewhat unruly in the sense that I can't just shake my wet hair dry (think how a dog does it lol!) and go. I've actually started using some hair product to give it some style, sort of a styling paste rather than a gel or mousse. Works really well and I have to say, it's kind of cute!

    Best to all,

    Anne




  • laurencl
    laurencl Member Posts: 203

    Piperkay

    You look amazing

  • piperkay
    piperkay Member Posts: 132

    Thank you, Laurencl!!

  • kaylajane
    kaylajane Member Posts: 39

    Piperkay, you are looking great! And amazing eyebrows

  • piperkay
    piperkay Member Posts: 132

    Kaylajane, thank you! The eybrows are a little enhanced with a brow product like eyeshadow. I've been using it throughout this whole process. Even before chemo took most of my eyebrow hairs away, I was using makeup to darken my eyebrows because I had a makeup consultation years ago where the consultant said darker or more prominent eyebrows were essential to a youthful appearance, even more so than eye shadow or other types of makeup. Seems to make a difference, so I'm sticking with it.

    Here's a website to just give you an idea of how many kinds of brow products there are out there now. https://www.elle.com/beauty/makeup-skin-care/tips/g8723/best-eyebrow-shaping-products/

    Have fun with it!

    Anne

  • rrshannon
    rrshannon Member Posts: 59

    I have been using some mouse to try and tame the curls. It is so grey which everyone likes but me. :(.

    Been fighting ear issues for a week, hearing is diminished and pressure is no fun plus dealing with getting my new thyroid meds in order. I made it 3 full days at work now for the last week I have been part time at home and part time in the office.

    My expander fills are done, now I have stretch marks :( and we are trying to schedule the exchange for the end of September.

  • piperkay
    piperkay Member Posts: 132

    Yay!! Port is OUT!!!!

  • kaylajane
    kaylajane Member Posts: 39

    PiperKay, good for you! My last Herceptin is December 3, surgeon says she can take port out that afternoon

  • Jenkins00
    Jenkins00 Member Posts: 99

    Hello! Hope everyone is well. Its been a little while since I've posted. I had my DIEP surgery July 24th along with port removal and right ovary removed. Recovery was tough especially since my ovary was removed the old fashioned way. I wasn't happy when I woke up in ICU and saw my new breasts. My nipple area has my stretch mark skin from my stomach. I guess I didn't realize that was the skin he would be using. I blame it on chemo fog and chemo brain. I have a pouch now where my belly button used to be. PS suggested surgery to take the fat from the pouch to fat graft where my port was and above my left breast. Tighten the skin in the nipple area to make nipples. Then I can get the tattoo's. I pushed this out to November as I needed a break.

    I started the Letrozole right after surgery and the hot flashes aren't as bad when I was on Tamoxifen. Its the fatigue that I'm struggling with. I am so tired in the morning I struggle to get up. I am taking my Letrozole at night and wonder if I should take it in the morning?

  • rrshannon
    rrshannon Member Posts: 59

    Jenkins00 hope your recovering well. I had my exchange surgery a week ago with fat grafting. I ave had major bruising from the fat grafting but thankfully there hasn't been much pain. My first ovary removal was 19 years ago and that was one of my worse surgery. They went through my c section scar :(

    I started the Letrozole back in May I haven't noticed a difference in fatigue probably because when i started it I was already fatigued. But I m also still on steroids due to my adrenal issues. I did feel about a month ago I started having some new aches in my bones But the last week I haven't had issues I guess I brain is to focused on the surgery recovery to worry about other issues :)

    I hope your fatigue is more surgery recovery related and not Letrozloe.

  • Jenkins00
    Jenkins00 Member Posts: 99

    rrshannon - I am doing okay. The doctor put me on Gabapentin last Friday for the hot flashes and to help me sleep. I see the doctor tomorrow to follow up. Last week was really bad. I was a walking zombie and so out of it. I couldn't focus, sleep, and my anxiety was crazy. I am not sure what her plan is but for right now she doesn't want me to stop to Letrozole.

  • rrshannon
    rrshannon Member Posts: 59

    I have take Gabapentin previously for never pain in my back it was the only thing that helped me sleep at the time. I have heard others say it helped wth hot flshes. Hope you get some relief.