Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Starting Chemo September 2015; join us!

1…3839414344…227

Comments

  • octogirl
    octogirl Member Posts: 2,434

    Just a few more more comments (sorry for any overly-chattiness, yep steroids...:-) :

    Grey: there is help for getting to and from appointments. If you look for Artista928 's posts, (another strong woman without a full support system nearby) she has mentioned (on another thread, I think) an organization that drives active cancer patients to and from doc apts. I think (?) she might have said she found it through the American Cancer Society? If you give us an idea of city and state, we really will try to help. We are here for you, you can do this!

    And finally, thanks to all for the hugs and support when the hair was hurting so bad. It is still coming out in clumps, but it no longer hurts, and honestly, given that, I might just give it a heavy dose of lint roller, shampoo it (it gives me big clumps that are then easy to take out) and go to work with a scarf, hat and whatever is left. I feel better about it today; honestly the amount of pain involved really threw me for a loop.

    Octogirl

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    octo, I had 6 pickles last night. And a bowl of olives. :)

  • teacherhikermom
    teacherhikermom Member Posts: 42

    Update from me: Chemo Round 2, Day 4 I ended up in the ER in excruciating pain and unrelenting nausea. They gave me dilaudid which made the pain better and nausea worse. I got hydrated (hadn't been able to keep anything down for 24 hours). Now back at home and still feeling like the walking dead.

  • octogirl
    octogirl Member Posts: 2,434

    so sorry to read teacherhikermom, hope you feel better soon!

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    ugh, so sorry teacher. :(

  • edwsmom
    edwsmom Member Posts: 270

    Ladies, a friend sent me a link to this website - a free headscarf to all who ask! :)

    http://www.goodwishesscarves.org

    For my port procedure I didn't have general anesthesia. They gave me propofol - it was delightful (not kidding, it really was). I was totally out, but woke up and was alert very quickly afterwards, felt very refreshed, like I'd had a great night's sleep. I was able to walk out of there on my own steam. General anesthesia isn't necessary for a port procedure and you'll feel yucky afterwards from it. Be your own advocate with your doctors!

    Grey - if you call your hospital, they will get you to someone who can arrange a ride for you. Can you ask the nurse in your MO's office who to contact for rides? That's who I'd go to first at my hospital. I doubt it would be the first time someone asked her.


  • edwsmom
    edwsmom Member Posts: 270

    (((Teacher))))

    Feel better!

    What chemo regimen are you on?

  • sailorgirl15
    sailorgirl15 Member Posts: 72

    Aga - as everyone said everyone is different but I have seen some trends of reported SE's based on the type of chemo each of us is getting. It seems there's a bit of a consistent difference between those of us on Dose Dense AC-T and the C-T gals. I was pretty wiped out Day 2&3and tried to go into school on Day 4 but was too shaky and didn't want to drive. Day 5 was better and I did a half day. I teach and am on my feet. This is week 2 and other than some unpleasant reminders here and there, my energy has returned and I am going in all week. I'm part time so I'm thinking I will hardly be there on chemo week and then do a lot the off week.

    We all seem to be working this out. I'm sorry to hear about some setbacks for some but cheering for good days for all.

    I head to get labs this morning and I think I will need that magic mouthwash. My tongue is swollen and hurts. If it isn't one thing, it's another.

    Have a great day!

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    the wait is the worst. I was nearly delayed because I was still draining after my bilateral msx and I was thinking, nooo I can't get geared up for this again.

  • Shopgal2
    Shopgal2 Member Posts: 594

    Teacher-feel better. Good to hear from you but not that you are feeling bad.

    edwsmom- the free scarf from good wishes is great. I got mine 3 weeks ago and it's nice.

    Cajun-love pickles too. Good snack

    Sailor-feel better, also I agree if it's not one thing it's another

    Ladies I see our sept group has more posts than the August group-wow we are an active group!

  • aggiemegs
    aggiemegs Member Posts: 86

    Ugh! My whole mouth feels like it's full of fuzz, my tongue feels too big for my mouth, and my throat/neck feels like my glands are swollen or like I'm really really thirsty (and I've been drinking a LOT of water, so I'm not thirsty. Guessing this is one of the AC SE's? I'm so not a fan! Other than this nonsense, I almost feel human again today.

  • tshire
    tshire Member Posts: 54

    I start chemo tomorrow. I'm scared. I feel fine! How can this be happening to me?

    I'm scared I waited too long to start chemo in favor of going to Alaska last week (but it was amazing).

    I'm scared I'm not doing the right chemo in not doing AC+T- 2/3 MOs told me to do TC, 1 said AC+T.

    I'm scared of all the horrible side effects everyone on this board talks about.

    I'm scared I'll get an infection.

    I'm scared I will need blood transfusions.

    I'm scared the cold capping won't work.

    I'm scared of getting frostbite from the cold capping.

    I'm scared that I'll be in too much pain from the cold capping and will quit and regret it.

    I'm scared that I'll be left with only gross thin hair if any at all, and that my hair will still be gross and thin for my wedding in March.

    I'm scared I won't be able to work. I can't really work from home with my job.

    I'm scared the chemo won't work and the cancer will come back.

    I'm scared that if we end up having a child it will cause the cancer to come back.

    I'm scared I don't actually need the chemo at all and all I'm doing is wasting my time and damaging my young "healthy" body.

    I'm scared because I heard that chemo ages your body 10 years.

    I'm scared of getting leukemia, permanent hair loss, and permanent neuropathy from the chemo.

    I'm scared that cancer is lurking in the other breast and just can't be seen on MRI.

    I'm so scared I might sign off again for awhile. The power of suggestion is pretty strong with me, so when I see people talking about all the terrible things I tend to experience them. Please pray for me.

    Here's a "before" picture from my bridal shoot. I wonder how I'll look after?

    image


  • Rosieo
    Rosieo Member Posts: 200

    tshire

    I will pray for you and all the other ladies on here. It is a scary thing. All the ladies on here that have shared their experiences have definately helpedme. Have faith in your doctor and think about the wonderful beautiful life you have before you.

    You look beautiful in your wedding dress. God Bless

    Rosieo

  • Skittlegirl
    Skittlegirl Member Posts: 138

    I am so sorry for all of your fears, tshire. I do think they tend to be pretty aggressive with treatment for us younger women. Trying to throw everything at it to prevent reoccurance. But I think you are in a good position. You have ER/PR receptors, so there are targets. You are early stage. But yes, no guarantees is scary. Hang in there.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    tshire, it is horrible having cancer in your 30s. It is horrible at any age. Last night, I broke down and cried and just begged God for more time with my children. But there is a lot of hope here too! I was petrified to start chemo but today, I got on the elliptical. Praying for peace for you.


  • DLcygnet
    DLcygnet Member Posts: 152

    Grey - I was totally able to work after getting chemo (at least round 1, so far). They pumped 2 bags of steroids and anti-nausea medications into me and gave me Dexamethasone (anti-nausea with steroids) for the 3 days after Chemo. I felt fine. I could eat. I could work. It was the 5th day after chemo where I felt like I had taken benedryl + nyquil and was fighting through this haze at work. Walking/hiking/anything that raised my heart rate seemed to clear any fog I was fighting through. In fact, the 4 mile waterfall hike/climb I did over the weekend seemed to clear my head completely. So yes, there are drugs out there for everything. If you walk or bike a lot, that may be to your benefit.

    Tshire - You're beautiful inside and out. Gorgeous photo! Cancer won't take that away. You might have some bad hair days for awhile, but we're all going to be working on our cute pixie hair cuts by Valentine's day. The holiday season is a busy time of year and this is going to fly by; it's a drop in the bucket in the grand scheme of things. I'm sorry you're so scared. It sucks being one of the 0.4% who get breast cancer in their 30s. On the other hand, the younger you are, the stronger you are and the easier it should be to get through it. After all the procedures and doctor's appointments, I just wanted to get it over with. How many weeks will you be on chemotherapy? Don't be afraid to pull the cancer card if you think you need to slide your wedding date.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    aggie, just wanted to say that I have a friend diagnosed triple neg at age 31 and she started AC+T and 3 mos later, they could no longer locate the once palpable tumor by MRI and she is doing great. Hugs!

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    It's the rally of the 30's club today!!! :)

    We are very selective and will consider the following factors for admission: bride to be, young children, demanding career, plate way too full already, and anything else that makes this the worst time to need treatment.


  • tshire
    tshire Member Posts: 54

    No kidding cajun!!

  • AnnieB43
    AnnieB43 Member Posts: 724

    Update...I am swinging from the chandeliers from the massive dose of steroids yesterday. I had 2 hours of sleep last night, maybe.

    I talked to the Nurse Practitioner about grumpy nurse and her sickness and her incompetence. Today my arm feels like she dug around in it with a fish knife. I told the NP that I don't want that nurse working on me again.

    The bad news is that I do have to switch meds from TC to AC. The quickness and severity of my reaction precludes trying again at a slower pace. She said if I reacted again it could be way worse and it wasn't worth it in her opinion. SO, port surgery on Friday. I read up on it and I'm more ok with it than I was. Its just UGH more hospital time!

    They are not extending my treatments. This will just pick up on Monday for round 2 just like yesterday never happened. SO I am only adding another week. Still 4 treatments total. 1 down 3 to go.

    The only thing this changes really is that I have to add regular echo cardiograms to the list for the next 10 years. SO all in all its not so bad. I'm getting better at accepting changes and rolling with it faster than is normal for me. Everything is a learning experience isn't it? You either change and grow or stand still and die!

    My kids are both getting sick. I have preemptively decided to keep them home from school the rest of the week to get them well so when I have chemo on Monday they might stay well for the next month and not infect me. I'm sure the school will bitch if they find out, but I'm going to lie and send in sick notes!

    I hope everyone is having a better SE day. Hugs to the sisters drugging it up today and lets all try and have a great rest of the week.

    Teacherhikermom I hope you get to feeling better quick!

    Finally, my wig is supposed to come in today. I am so EXCITED to get some long hair back. Will post pics when I get it! Woo HOO Steroid induced energy ROCKS!!!!!!!!!!!

  • edwsmom
    edwsmom Member Posts: 270

    tshire,

    I certainly understand being scared I was too. If it helps you feel any better, everything I've experienced so far along this journey has been way worse in my mind than in actuality when I went through it.

    My MO told me that according to the research there's no difference in outcomes for AC or TC. So don't worry about that.

    I also postponed my chemo start date a week because I wanted to go on a business trip. My MO said one week wouldn't make any difference.

    I'm doing the TCHP protocol and based on my experience with the first round, I'll likely be out for 3-4 days every three weeks tops to deal with the chemo - which is not bad at all and my company has been very flexible about this - I'm sure yours will be too.

    Anyway, I can't fix it for you, but you're not alone and we are all going to get through this!

  • AnnieB43
    AnnieB43 Member Posts: 724

    Ok Southerncharm is cute as a button buzzed or capped!

  • edwsmom
    edwsmom Member Posts: 270

    Southern! Where did you get your wiglet? I love it!!

    It looks fantastic on you!!

  • AnnieB43
    AnnieB43 Member Posts: 724

    Southerncharm where did you get the wiglet?

  • edwsmom
    edwsmom Member Posts: 270

    I really want a wiglet and hat, but I can't figure out how to pick one out.

    When I look online, I can't figure out what's what and what any of them would look like (they are always on a model). For some reason I can't visualize it.

    Any advice?

  • LindyC
    LindyC Member Posts: 210

    SouthernCharm.. WOW! you look great with or without :)

  • AnnieB43
    AnnieB43 Member Posts: 724

    I bought the hat hair from the tlc website. It's horrible and unusable. It sheds. It's lopsided. It's an ugly frosted mess of a color. So disappointed.

  • edwsmom
    edwsmom Member Posts: 270

    Ok - I think what I should have been looking for is a "halo." That might be where I was going wrong...

    Thanks for posting that, Southern!!

  • AnnieB43
    AnnieB43 Member Posts: 724

    Headcovers.com has some. Hats with hair has some too but they are part human hair and pricey.

  • Shopgal2
    Shopgal2 Member Posts: 594

    tshire I see you have already had 2 lumpectomies since your diagnosis in June. All that and planning a wedding? Wow. Know we will support you here thru it all and you will be beautiful at your wedding.

    Southern you rock for posting the buzz pic. I wish I were that brave. You look def are a hat gal in your wiglet. Where did you get it from? Is is wavy or curly? I am also jealous of your eyelashes.

    Aggiemegs I also get the fuzz mouth and tongue from AC. Rinsing with baking soda and water helps. The icky mouth gets better the week after.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.