Starting Chemo January 6, 2014

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  • Ciamarro66
    Ciamarro66 Member Posts: 11
    edited January 2014

    Hi Ladies - starting chemo tomorrow along with a lot of other ladies here. Good luck to everyone. Hoping no one has horrible side effects. Thanks to all those who've already started to let us know how it's going so far. Good to know what to expect. Got a human hair wig yesterday. It's ok but not loving it. Not sure how much I'll even wear it. Might just stick with scarves and hats mostly. 

    My port is never accessed except for chemo. They do blood draws from my arm and the MUGA scan was also done with my arm. 

    Carpevinum - Welcome and sorry you have to be here. My cancer was node negative too and I've never had any scans either. Think I'm going to have to insist on it.  

  • Sam2U
    Sam2U Member Posts: 233
    edited January 2014

    CarpeVinum sorry you need to be here, but hopefully we ca support each other.

    Palo--glad Tang and I can offer a moment of comic relief :lol.   I "farted" for the nurses putting in my port, one of them said "ooh gross" so it's not just the men--but my 12yo son had great awe & envy!

    1 more sleep to chemo---yay!---NOT, but we will get through this!

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited January 2014

    hi calmandstrong. Initially I thought I wouldn't be able to work (I'm a nursing unit manager in a surgical ward), but now I've started chemo I believe I will be able to work. You never know, you may find that you might be able to do a few shifts! 

    LIL

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    Tangandchris-OMG! You still have that drain. I remember when you were first on the thread for Nov. Surgeries and nervous about the MX. I'm so sorry you are still dealing with that!!!

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    Lisacm-if three of your friend made appointments then you obviously made an impression and may have saved one of them!! Good for you!! :)

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    Carpe Vinum- Sorry your here but welcome. Do ppl usually get ct scans with DX?  I had an MRI on my chest and that was it. Of course every pain I have, I wonder if it's some place else. How about everyone else, did you have scans?

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited January 2014

    hi again, I had scans prior to surgery 'cause we knew I had positive nodes. It all happened really quickly for me. I had a sore nipple for a few days after my period and was able to get a referral and appointment the same day. Within 1.5 hours I had a physical examination, mammogram, ultra sound and 4 fine needle biopsies......and a positive diagnosis of breast cancer with lymph involvement. The next day was ct's, the day after bone scans and a doctors appointment confirming diagnosis and no evidence of metastatic disease. 3 days of unbelievable stress but better than 3 weeks which some people endure. It is a hard call wether to insist on further investigations or not, I just know I felt a lot better when I knew there was not disease elsewhere.

    LIL

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Hi Everybody - 

    I am joining the club.  My first Cytoxan, Taxotere infusion was yesterday.  It feels like the quiet before the storm.  

  • paloverde
    paloverde Member Posts: 179
    edited January 2014

    In 45 minutes I'm off to get AC #1.  I slept 6+ hours last night, thank you Ativan - not sure I can repeat that feat tonight.  

    Best wishes for everyone else starting today, and who started yesterday or earlier this week.  Let's all pull together, as we women do so well!  Welcome CarpeVinum and others new to the thread, looking forward to getting to know you. 

    I had bone and CT scans in a big rush the day after they reported my 11 positive lymph nodes back to me, which was one week after surgery.  Walked in there with my 4 drains and hard to hold my arms close to my head.  VERY tough 4 days of waiting, but we got the good news of no evident mets and no apparent funny stuff in any other regional lymph nodes, 2 days before Christmas. 

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited January 2014

    good luck paloverde and all of our group!

    LIL

  • katiegrey
    katiegrey Member Posts: 79
    edited January 2014

    paloverde - I get my first AC in 2 hours. Hugs to you and best of luck. 

  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2014

    I had a PET scan after dx and then a PEM rather than an MRI after dx as well.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Paloverde - It's my quote of the day - "No apparent funny stuff!"

  • paloverde
    paloverde Member Posts: 179
    edited January 2014

    WW - glad you like!  The operative word being "apparent," of course.  

    I once had a prof who coined "coefficient of goofiness". 

    How was your first TC and the cold cap adventure?  

  • Warrior50
    Warrior50 Member Posts: 94
    edited January 2014

    I am in the chair for FAC #2 today.  2 more and then I am on to surgery and rads.  Will be very glad to get some hair back.

  • stephaniegee
    stephaniegee Member Posts: 81
    edited January 2014

    Quick hair question. I had my first AC almost 2 weeks ago but have not lost any hair yet. My doctors told me within 2 weeks. Anyone notice hair loss yet?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    I was where you all are a year ago. I started chemo on Dec. 7, 2012, but I bonded more with the January 2013 ladies than the December ones.

    I started chemo (AC) on Friday 12-7-12. Two weeks later on Sunday I noticed when I ran my fingers through my hair there would be strands clinging to my fingers. I considered day of chemo to be day #1, so I noticed hair loss on day #17. I had cut my long hair in a pixie the night before starting chemo. My treatments were every 3 weeks. On the day before chemo #2, I buzzed my hair off. I had woke up that morning to find hair all over my pillow. I was pleasantly surprised to find I had a nicely shaped head. If I had been younger & thinner. (I'm 63) I would have put on my makeup, big hoop earrings, and ROCKED the bald!

    Blessings

    Paula

  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    I just had my second treatment.  I see the occasional eyelash, hair in the toilet and sometimes hair from my head.  I cut mine to about 2 inches all over my head. I have curly so it cover a lot of sins with a bad hair cut.  I do expect to start losing more soon.  I will keep everyone posted.

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    my first chemo was dec 30th. Began noticing hair coming out about 3 nights ago. So it was about 14 days??  Anytime I ran my fingers through it I came up with a handful of hair. I buzzed it off yesterday. 

    2nd AC next week...

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    My understanding is that the hair loss depends upon the regime but typically hits around days 17-21 and sometimes earlier.  I am giving the cold caps a try.  It might work or it might not so I have a wig on reserve just in case.  I'm also using the Brian Joseph lash and brow conditioner with hope of not losing too much around my eyes.  I am terrible at drawing and I can just imagine the mess I'd make in my attempt to create my own brow line.  

    Paloverde - We were the Mad Cappers.  I think it served as a good distraction to all the other things I could have been worried about during chemo.  And trust me, I have a long list of things I'm good at worrying over.  

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited January 2014

    I lost my hair on day 15 of my clinical trial of Cytoxan and Taxotere last April. You'll know it will be soon when you start to feel a strange tingling or tenderness in your scalp. That's the day I had my kids chop of my long hair, style it into a sort of Mohawk and we all had a good laugh. The next night I couldn't stand it any more and had my hubby shave it down to 1/4". I would shampoo and rinse and rinse and rinse in the shower and the hairs just kept sticking to my hands, kind of like when you bathe a long-haired shedding dog. I was relieved when it was all out because that tender-scalp feeling makes it kind of hard to sleep. Oh I lost most of my eyebrows and all of my body hair too! Having no body hair was FANTASTIC and wow were my showers short ~ no shampoo/conditioning and no shaving. Anywhere.

    The last period I had was 21 days after my first infusion. Hasn't been back since. I can't say that I miss it AT ALL.

    I'll be thinking of all of you ladies who are doing your first chemo this week. Drink drink drink water, green tea, juice, Gatorade, whatever you can, even if you can't stand the thought of it. With my last chemo I had terrible constipation. That was hands down the very worst side effect. It's bad enough being bunged up, but you don't want that toxic $#itstorm  in you any longer than necessary. On infusion #2 I drank one cup of Smooth Move Tea (on day 1 before bed) and that solved that problem. I did get some wicked cramps but it was better than the alternative. Some wonderful friends gave me a care package and in it I found some Sea Bands. They really worked for nausea. REALLY. If you haven't got them I would strongly recommend them. Also Chimes Ginger Chews worked well.

    Here's hoping for lots of restful, healing days ahead ♥

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Warrior, I have a couple of friends who used cold caps. They were happy with the results. Hair still got a bit thin on top, but now 6 months pfc you can't tell they ever had chemo.

    Paula

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Soteria - If this works I expect 9 months of looking like Broom Hilda (only with thinner hair).  LOL  I like your byline.  I chose my name because this feels like the fight of my life and I need to win.  

  • otceb
    otceb Member Posts: 156
    edited January 2014

    Hi, so much catching up to do! I applaud the ones who have had their first treatment, and thanks for sharing your experiences.

    paloverde- I'm BRCA2+ also, I found this BC just from the supposedly "baseline" mammogram I had after finding our about the mutation. So good thing it was caught early! Yes, from what I hear, FEC-D is popular in Canada and maybe also UK/Australia. No idea why doctors in one country prefer one treatment over the other. We'll trust them, I guess!

    Calmandstrong - hi, fellow Torontonian! Are you getting treatment at PMH? We'll compare notes on our SEs! Yes, of course as an ICU RN, you would need the time off, for so many reasons. I'm an IT project manager, so I have the flexibility of working from home and don't have a physically demanding job. We'll see how it goes, though. I'm glad I proposed this work arrangement to my manager, though, since I found out that his mother did exactly the same thing during her chemo last year. I probably would have seemed weak to tell him I will be off for the full 5 months!  Anyway, it does not matter, who knows how my body will react and if I will have the physical and mental strength to work, we'll adjust as needed.

    Lisacm, nancyjeanne, carpevinum, Paula, and all - so nice to meet you. I have a 5 yr old son and will tell him about chemo this weekend. I have this book from a local support group to help explain BC to kids, hopefully it will help. I will be open and straightforward with him, but try not to scare him. He has been great with the BMx, but he has said things like "It's good that you look like you have breasts [with the fake boobs] so that kids don't laugh when you picl me up at daycare"... Kids are affected by appearances, but deep down, all they care about is that their mother is alive and well. Right? Smile

    lisacm - i think you did a great service to your friends inciting them to get mammograms. Why not? Some men are so concerned about what others think, and how this is private. But it's not, it's women's health!

    Paula, thanks for all your great advice for us, newbies.

    Warrior_Woman, I've seen you on some exercise thread. Unfortunately, I have not been able to run since an infection landed me in the hospital over the holidays. I miss it terribly and since this infection triggered some LE in one of my arms, I've been told not to run for another 2-3 weeks, to not take chances of getting fluid build-up again. Crap! How is it going for you?

    stephaniege - where are you in Canada?

    I'm going to a wig place this weekend, I hope I will be able to get one I like, looks like my hair (curly), and can wear.. Chemo will really test my pride, I guess it will have to go out the window! It's going to be like shock therapy... Anyway, I'll get a short hair cut a week later, then chemo starts... My head is spinning from all the things I should get, prepare, etc. I've been copying/pasting from all the tips/shopping list thread, etc., i'm at 16 pages! I'm such a loser!

    Reading some of the stories here, there are so many ladies who have been through so much. It's a real honour to spend the next few months with you!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    Otceb - The days I've been out on the trails running have done wonders for me both physically and mentally.  I did my 1st TC infusion on Tues and went for a 6 mile walk/run with my dog yesterday.  I went to the gym today and I'll try to run again tomorrow.  I'm a bit nervous because I don't yet know what to expect from the chemo.  I don't want to get far out and be stranded.  When I am running I feel like I'm giving cancer the big middle finger.  LE is scary stuff.  Stay on top of it.  That seems to be the trick.  When it gets bad it is disabling. 

  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    octeb no one here is a loser and neither are you we are in the fight of our lives and we need all the ammo we can store.  I say good for  you.

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited January 2014

    we'll I've just returned from oncologist appointment and everything is good. Bloods etc great, and we have reduced the dex dose for my next cycle so I'm not so wired. I suggested to her that I feel like a fraud 'cause I've been so well, she laughed and put it down to her good management! She said that in her experience this first cycle is pretty indicative of what's to come. I feel very lucky and hope she is right.  I have so much confidence in her and I hope you all feel the same way about  your teams. 

    LIL

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    I found AC 1 to be ok. During my nadir period of #2 I got a really bad cold that lasted 2 weeks. I've always been able to kick a cold in 4 days. AC #3 literally kicked my butt. The effects are all cumulative. I found my last AC to be the easiest, but alas, I developed a blood clot in my leg caused by the chemo. I had to give myself injections twice daily in the stomach for 4 months, but that's rare.

    You will be amazed at how quickly the time passes. I started to get stronger about 2 weeks after my final chemo and got stronger every day. My lashes and brows came back so quickly, I just looked in the mirror one day and said, "Wow! I have lashes." Some say theirs fell out again, but mine never did.

    My hat is off to all you ladies who have jobs and or kids. I've no idea how you do it, but I know many who handle it all with grace. God bless you all.

    Paula

  • paloverde
    paloverde Member Posts: 179
    edited January 2014

    Yikes, I hope this first cycle isn't indicative of the next - or at least the first 24 hours of it.  

    I suspect some of it is from not getting the Emend - thank you, freakin' Caremark - but also possible I tried so hard to do everything "right" that something I did was counterproductive.  An hour after I got home from treatment I felt fine and had plain yogurt with frozen blueberries and wheat germ - active bacteria to prevent thrush! Fiber for constipation! - but maybe it was too soon for food.  

    About an hour or two after that I started feeling a little queasy and headachy.  I decided I'd better take my Claritin then, just to make sure I wouldn't be in the position of not being able to keep it down later, and suffering from the Neulasta shot.  Then I napped for 2 hours.  When I got up I tried to drink a bunch of water and eat half a chicken thigh, and proceeded to vomit 3 times in the next 3 hours.  2 calls to the MO triage line, and worked in some Compazine (which I had to take a "replacement" dose of, shortly after episode #2) and then some Zofran and Ativan which finally worked.  Took another Claritin before bed.

    I had also really taken it to heart to drink as much liquid as I could stand - maybe that was overdone as well in those first few hours.  Anway, even with the vomiting, I was able to continue peeing last night and this morning so I don't think I'm dehydrated.  

    Will see if there's some avenue for the MO to go to bat for me with Caremark to get Emend covered going forward.  Or, maybe that wouldn't have worked much better, I don't know.  

    This morning I'm fine, so far - took a Tylenol for the foob pain and had my Zofran and Dex with a piece of white toast and a little Gatorade G2.  Not sure what to expect today.  Taking it easy.  Looking forward to seeing my friend who will take me downtown for my Neulasta.

    I hope everyone else is doing as well as can be expected!  

  • Diamond_lil
    Diamond_lil Member Posts: 76
    edited January 2014

    hi paloverde, sorry to hear you have had a rough start. I didn't try to overthink things too much, I just ate normally and luckily didn't need to take any extra medication at all, only dex as pre ordered. I hope the next few days are easier for you.

    I'm getting my hair cut very short tomorrow....I hope my head isn't too ugly or misshapen under there. I haven't had short hair since I was 12.

    Sending smiles

    LIL

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