January 2013 chemo group

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    I don't know, Bryona.  I've been pretty crack-monkeyish today - not physically but mentally.  

    (!!!!!) 

    Now I'm getting ready to go get that shot for the first time.  Neulasta.  

    When this week draws to an end I will have been at the cancer center every single day - Monday, Tuesday, Wednesday, Thursday, Friday.  Tomorrow is free acupuncture day!  Woo hoo.  I hope they avoid the triple junction on my left calf or I may go straight through the ceiling (ugh, the acupuncturist I went to last summer would hit that place and it was like an electrical shock - I ended up not going to her anymore - not just because of that but because here in California, acupuncture clinics can be thinly veiled covers for prostitution set-ups.  Yes, I googled her name.  Yes.  She had been disturbing the peace). 

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Sounds like you have a good plan Nikkiliz!

    Further thoughts on work:

    I know people work while on chemo, but I know I cannot.  I thought I was being a baby because another gal at work did work throughout chemo.  I'm not sure she had Adria, though, so I try to imagine she didn't and that is why she could work.  Or maybe she didn't have dose-intensive...or, you know it's about what I need, want and am able to do.  I know I cannot handle the stress or the emotional roller coaster.   If I am going to have a few good days between treatments,  I am not going to spend my limited energy on work.  I probably wouldn't be very effective anyhow, and I'd rather prepare a nice dinner, go to a movie, or even clean house!  (It's all about having some control over your life even if it is just cleaning!)

    I will re-evaluate things once I have completed AC and have an idea of how the Taxol is going to affect me. I've heard that it may be easier on the body, and hope that may allow me to return to work.  For now, my job is to stay as healthy as possible while absorbing bi-weekly dosages of poison. 

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  • honeybair
    honeybair Member Posts: 746
    edited January 2013

    Thanks for all the helpful suggestions. Iit is so good to connect with all of you.

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    Ladies!  Just met with the surgeon...the news is good!  I am staged as a IIa...woo hoo! with 2/25 nodes and clear margins.  MY warrior princess nodes did the job.  Superheros extraordinaire!  I love my now-defunct nodes...a formal thank you for doing your job beautifully...my eternal gratitude.  No receptor info back yet but my cat scan today came back with an all-clear so i am feeling cautiously optimistic (insert Snoopy's happy-dance here).  Only iffy note was the "possibility of a BRCA associated cancer" due to the high grade (3) and "medullary-like features and a very high mitotic count"...so i'm gonna get tested to rule it out.  That said, keep your fingies crossed- NO breast or ovarian cancer in my family so i'm hoping for a GIANT RESOUNDING NO on the BRCA.

    So overall...a damned good night...just what i was hoping for..yeah!  And if there are any cellualr insurgents out there...watch out...I'm coming for your asses...chemo starts mid-Feb.  Nowhere to run...nowhere to hide...just annihiliation.  Die cancerous bastards, die!  (I feel like G.I. Freaking Joe!!!  I am Canadian...this is so out of character...)

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  • Rhonda2
    Rhonda2 Member Posts: 133
    edited January 2013

    Hey everyone,



    First round of chemo today, and I didn't feel anything as it was being administered. I hope that means that my SE will be few or not too hard on me.



    Hope, I am still wearing the last cold cap and only have 20 more minutes to go. I am the first patient to use them in the Oncs office. The Pharamsict stopped by and she new what they were right away. She encouraged me and DH and said for every hair you save, it's worth it!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Lee, that may not be a crack monkey in your head. My husband insists that thinking involves a little mental gerbil running in a wheel in our brains (although he also claims to have a nice, chubby, sleepy hamster instead). I think maybe your brain-gerbil is on crack. And a gerbil should never be allowed crack, not even over long weekends.

    smethot, WAAAHOOOOOO!!!!!! Fantastic news! And don't sweat the BRCA test. They gave me one for similar reasons -- high grade, crazy mitotic rate, young (well, young by BC standards, anyway; I'm 43) -- but I have no family history, either, and the tests came back negative. You just keep on kicking cancer's ass, you crazy little Canadian ninja warrior!

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    smethot,

    OMG the picture of racing stripes all up my face if no eyebrows has me hysterically laughing. Gonna have to buy some prettier colors insteat of the muted browns. Thanks for the laugh.

    Sheryl

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Whoa. I need to go back to work. I've clearly got FAR too much time on my hands, and too much access to Google Images...

    Rhonda, glad it all went well. Remember to hydrate, hydrate, hydrate, and to write everything down, and to keep us posted. :)

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Zorina,

    I am struggling about going back to work for the reasons you describe. I even created a thread here on the discussion boards to get others opinions. While quality of life is a big reason, I work in an outpatient chronic dialysis clinic with pts. with Hep B and Hep C, HIV, shingles etc and every other virus you can name and I just don't want to risk my life to an infection after going through all this. I am fortunate that I get 60% of my salary so I can make it, barely. If I stay out past 12 weeks allowed for FMLA then I may not have my exact job back but as a nurse as long as they give me a job at a clinic that I can drive to, no biggie. I would prefer to go back to my clinic but I have to do what is best for me. I think you have the right attitude if you can stay home. Just don't turn into a couch potato that wouldn't be good at all. I just want to try and enjoy life now, I have worked for 43 years and don't mind a bit of a break right now.

    Sheryl

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    So I went to plastic surgeon today to make sure I am healed enough for chemo on Monday. When he took the steri strips off of my left breast there was another wound that had puss on it. He gave me some ointment and bandages and said to Change it daily and I have to go back Monday morning and he going to put a few stitches in it. He thinks I will still be able to start chemo on Monday. I hope so, I just want to get it over with. Has anyone else had any problems with wounds after their mastectamy? I don't know if having implants put in same time has anything to do with it.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    smethot - congratulations!  LOL @ "I'm Canadian...this is so out of character."  My best online friend who I've never met (and probably never will - despite the fact we've been buddies for 7 or 8 years) is Canadian as well and that sounds exactly like something she would say.  BTW, it looks like Bryona has posted a photo of a ninja wearing a TUQUE (I love that word and my friend and I were discussing it just yesterday). 

    Bryona - yes, a hamster on crack - and on a very squeaky wheel.  I'm good with that!

    Rhonda2 - congratulations on day 1 (and with cold caps).  Yours is a frosty tuque!

    SherylB - I cannot imagine subjecting yourself to so many opportunities for additional infections during your treatment/recovery.  It sounds like you're doing the absolute best thing possible for your health - which is to stay as far away as possible from that kind of exposure. 

    ---

    I just had a Neulasta shot.  I sure do wish the nurse hadn't plopped the package down next to me with the back facing up so I would have a chance to read all the so-called ingredients.  For the love of God and all that's holy . . . I want to erase those words from my mind!  Oh well.  I guess it's better than wiped out white blood cells.

    Onward and upward.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Colleenkelly - I have tissue expanders but I developed an infection and they had to go in and remove one of the tissue expanders and replace it which delayed my chemo somewhat.  I also had to go on intravenous antibiotics.  That said, if your PS isn't putting you on antibiotics of any kind it sounds like it's not that serious.  

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    Hey Bryona! I was doing great, healing well, feeling more energy, getting ready for chemo on Monday. Until today. Overnight, I started getting very short of breath and every breath hurt, like a stabbin pain. Had the stitches out yesterday morning, felt great in the afternoon. By dinnertime, it started sliding downhill.



    This morning, saw the surgeon, did an X-ray, and they can't find anything. If I'm sitting, I'm ok, mostly, though it also depends where I'm sitting. But if I try to do anything, even walk to the bathroom, the pain and shallow breathing are back.



    I have no idea what is going on. I'm scared and in pain and worried about chemo now. Maybe it's the anemia, maybe it's inflammation from either the tube or the fluid that's still there. No answers. And my husband works nights so I have the extra stress of caring for my babies with a handicap.



    If I'm already anemic, what is chemo going to do? Dr google only had answers for chemo induced anemia. Tonight i had ground beef with spinach, a kale smoothie, and an iron supplement. Hopefully it'll do something.



    Wow. Sorry for the rant. Just feeling scared and out of control when yesterday I was ready to fight.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Oh, Mandy, how awful for you! Don't you dare apologize for ranting, you crazy person. I'm just so, so sorry to hear this. Are they planning to do more tests? A CT or MRI or ... I don't know, something that will give you some answers. Big but gentle and totally pain-free ((((HUGS)))) to you, my dear. 

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  • tammi
    tammi Member Posts: 13
    edited January 2013

    Hello all. Got through my first round today. it was very smooth, felt nothing. relaxing took some nausea pill and Ativan to relax. don't know if I feel much of anything. my tongue feels fuzzy. we will see.



    anyone talk to their dentist. mine insisted that I get tooth impression trays and use fluoride treatments nightly for 30 minutes. he says that cam be such a help, so I'm doing that.



    have a good night all and nice reading on those who started day.



    tammi

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    I was thinking my chemo would start this month, which is why I joined this group.  Now because of some  complications, my port won't be put in until Feb 20 and I will be starting chemo in end of Feb or early March. I want to stay in the January chemo group though. 

    *****************************************************************************

    I went to my surgeon today. 

    All 4 drains were removed, yay. The surgical site on the left had a very big scab, and a hole under the scab, so that's why the left drain bulbs were not keeping the vacuum well. He put in a couple of nylon stitches and packing, so I will be coming back here several more weeks. Not too thrilled about that but that's what needs to be done. He said he can still schedule my port insertion, so even thought there is more stuff to be done, I am so glad the drains are out. He said the left doesn't look infected, so no abx needed, and said this shouldn't interfere with me starting chemo. He said I should see my primary for my complaint of being lightheaded and headachey for the last few days, and I will try to schedule for same day as surgeon's f/u. Waiting for them to come back into the room to do the stitches.

    Ok, stitches and packing are in. I have to come back once a week, and a home health nurse will come daily to repack. I got permission to go back to work Monday the 28th, so I will need to schedule the nurse for 4 or later, and take leave daily from 3:30 to 4:30. I will be able to conserve a lot of my leave that way, so it will last thru chemo (I hope).

    The port is scheduled for Feb 20th because of the wound packing. Thank God for my good friend Selma who is my taxi driver. May God abundantly bless her.

    Tomorrow I come back here to see the medical oncologist to see what chemo protocol he would use, for comparison with the onc I will see on Wednesday...The one I will most likely use.

    I am going back to work on Monday, hope to feel stronger than I do now.

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  • Jubby
    Jubby Member Posts: 85
    edited January 2013

    Hi Ladies,First treatment done and I am feeling surprisingly good. I was freaking out a bit when all of the nurses seemed baffled that I was having my first treatment as an outpatient (they thought a night's rest away from the kids would have been a good idea and they can give IV anti nausea meds) but the process was pretty smooth. They gave me an Atavan (Sp) which is something like a Vallium. It helped relax me but not sure I'll need it next time. I actually slept last night despite the steroids!



    Off for the Neulaster today. My 4 year old is home with me and I have my bubs in childcare today to allow for a nana nap when the urge arises.



    I have had a bit of nausea but it's been manageable with the meds and I'm drinking water like a fish which is a pain due to toilet stops but I think it's helping.



    I am eating really well and using lots of supplements - broccoli sprout powder capsules, Green barley capsules, turmeric, acidopholous, maitake mushroom capsules etc.. I have stopped booze and coffee (soooo hard for me) and am drinking green tea like crazy.



    Very interesting about the Vitamin D. I had low levels after my kids were born and had been very fickle about taking supplements. I am now on 2000 IU a day. I think there must be a link btwn BC and low levels as I have also read about this in a lot of places. Interestingly low D levels are also linked to depression and prior to getting BC, I had the most stressful 18 months of my life (illness and death of a close relative, a pregnancy, a tricky newborn (reflux), a child with toileting problems (had to be hospitalised), husband lost his job... the list goes on.....). I often wonder if the stress was my BC trigger. After my last child's birth, my D levels were very low too. I am also waiting on genetic test results. It takes months to get them here in Australia. My Mum and aunt had BC and we think my Grandma (too long ago to have been identified). This being said they were in their 60's and 70's so I feel like I had a few more free years up my sleeve and had been getting tests (last was 3 years before diagnosis). I am having the other breast off after chemo when I have my reconstruction regardless of BRCA results. My aunt had hers come back in the other breast which killed her so I am taking no chances with a young family.



    I am doing Lumigan on my eyebrows and eyelashes ladies so will let you know how I go. It's the eyedrops for glaucoma. It's available on script. Could be called something else over there. I am not putting it in my eyes but lightly brushing it at the base of the eyelashes and on my eyebrows. I had long blonde hair (dyed to cover greys) which I have had cut very short in anticipation for the loss. It looks good! Losing my head hair doesn't worry me but eyebrows I feel a little more vain about. They're a prominent feature on my face and I had visions of me drawing them on and ending up looking like a drag queen mixed with a 20's black and white film star :) I'll let you know how it goes. It was interesting hearing from people "Oh, you're so brave to chop off all your hair". Um, no, it's a bit of a no brainer really. Brave is chopping a breast off, having chemo and facing cancer at 40 with 2 small kids. It's funny how most of the superficial ceases to matter. Although this being said, I feel that making an effort (how I dress, make up, exercise) is a priority right now. It makes me feel better. I cannot wait to loose leg hair and the bikini line (or paragraph as I once heard a comedian call it!).



    Glad to have found this forum to rant and share experiences. Gotta love the internet. Many of you have 'ski' in your names. Here is Australia we are having one of the hottest summers on record. It was high 30's yesterday and we've been reaching 40+. Skiiing is the last thing I can imagine right now!



    Sorry for the long post. Off to walk the dog and enjoy some sunshine with my 4 year old on his bike along the beach before the neulaster injection!



    Take care ladies...



    Jubby x x x

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Skigirl72, 

    I just read your post about what you told your son. I think that's great. You gave him info, and told him that it's ok to feel whatever he is feeling. Excellent!!

    That got me  thinking back to November when I had the conversation with my boys (13 and 15) One of my youngest son's best friend's mom has stage 4 inopporable BC and it's in her bones and organs. It's wicked scary and I know my son has been really worried about his friend and his mom, so when I told the boys I tried to reassure them that I was only stage 1A and that after having the surgery I was going to be ok. Well..... I guess i must have done a good job down playing it for them, b/c the next day my youngest went to school and at lunch he was talking to his group of friends (Whom all know me) and he told them, "So my mom just told us she has BC and is going to have surgery. But don't worry she has the good kind of BC." Ha ha ha! The good kind? LOL! What he meant was that it was a beginning stage and that the prognosis was excellent. LOL! Boys. :) 

    Everytime I think of that it makes me laugh. LOL!

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    Thanks for the hugs, Bryona; I need them!



    I have a CT scan (which just reminded me to go drink the barium --thanks!!) and a bone scan scheduled tomorrow morning but ordered by my oncologist. The thoracic surgeon didnt want to radiate me unnecessarily without any additional signs of blood clot. He said he could always radiate me on the weekend.



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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Oh.... and I'm day 16 post 1st TC cocktail and my hair hasn't done anything yet, No thinning and no falling out. Fingers crossed that the cold caps are doing their thing and working. LOL! I am cautiously optimistic..... but....... sigh. Deb

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  • Jubby
    Jubby Member Posts: 85
    edited January 2013

    Good luck Mandy.

    Keep us posted on your tests.

    Will be thinking of you.

    x x x

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    Thanks Jubby. We have a little more in common. I too believe stress put me here. I'm typically a crunchy hippy health nut. But the last two years have been incredibly stressful. My daughter has multiple food allergies that took me 14 months (starting with severe colic around 2-3 weeks old) of fighting the medical community to identify. Work stress was atrocious.

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Jubby, I'm so glad you are feeling well after your first treatment!! Yay!! Hopefully you SE will be minimal and you'll breeze right through this! Hugs, Deb

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    Did anyone else "overreact" to the Neulasta?  It's supposed to prevent low WBC count.  I had mine the day after chemo, and by the following week my WBC was 56.0  (normal is 5-10). Sounds ridiculous.  I will ask my onc about it, but maybe not everyone needs it?  Or needs such a high dose?  Shoshana

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Mandy, I hope they can figure out what's going on as soon as possible!

    Jubby, a walk by the beach sounds great (all those negative ions).  Are you taking Claritin along with the Neulasta shot?  I had one today and took a Claritin yesterday, today and will take one for the next few days.  This was my first Neulasta shot so I'm not sure if the Claritin will work but I'm all for trying anything.  

    Amrdbit, I hope your hair stays put!  The cancer center where I get treatments has a Cold Caps freezer but I haven't seen anyone wearing them yet. 

    gd2shuz, Sorry to hear you've had a delay in your schedule.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    For you smethot:

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Mandy, so sorry you are feeling this way. I hope they have answers for you soon. As a person who suffers from anxiety I am the last one who should tell you to try not to stress about it, but if you worry to much the anxiety may add to your shortness of breath. I have ended up in the emergency room a few times in my life with chest pains, fast heart rate and shortness of breath and it was all due to anxiety. Food luck with your tests. I hope it is something with an easy fix. So my husband has a really bad stomach flu. Coming out both ends bad. I am praying I don't get it and if I do, it needs to happen really quick so I can still get my first chemo on Monday. Jubby - my hair was really long and I too had it cut short. But I must say I haven't had any say something so stupid. People are so weird. I agree about the eyebrow thing. It will suck if they fall out. Eyelashes too. Do they always fall out?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Mandy & Jubby...I too believe stress was a huge factor for me. The past few years have been so stressful.



    In 2008 my DH fell off the wagon after 12 years of sobriety. In March 2009 my 20 year old son was diagnosed HIV positive. He had been Type I Diabetic since age 6, taking 4 insulin injections daily. At age 11 he quit growing for 2 years and after many tests looking for a brain tumor, they determined he needed growth hormone injection at bedtime. When he was 17 they determined he has an enlarged liver.



    Two weeks after the HIV diagnosis my beloved Aunt June fell in her home and suffered a severe head injury, so after the hospital and rehab she came to live with me for 3 years. I did everything for her..cooking, laundry, cleaning, changing diapers, bill paying. For 3 years I only left home to go to church and he grocery store.



    She passed away in June 2012. One month later I was diagnosed with BC.



    Sorry, I guess I got carried away there. My point is, I was so busy stressing over everyone else, I forgot to take care of me. I was 3 years late getting my mammogram.



    Blessings

    Paula

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    ablydec, are you reading the test result for your WBC? Today the onc said when they determine whether you are in range for WBC they actually look at severl other things listed on the report and not just the WBC. So that figure can be very misleading. You should talk to your MO and see what it means and whether to be concerned.

    You gals are awfully chatty today. Are you sure you weren't at the bar getting hammered? I was, but this go round has been a little different from the first. First of all, I didn't get the steriod high last night. I was exhausted. Took an Ativan just in case and my husband said he has never heard me snore so loud. sleepy  Had acupuncture today, although he told me I should do it a day or two after chemo for the SE's. He was so amazing with the information he came out with. He felt some places on the back of my knee/leg and asked if the pressure hurt, which it did. He said that is where I hold stress, or it can also be effects of the chemo. Strange! I never noticed until he pinpointed it. He also said, just be feeling my pulse with his hand, that I aim to please everyone and hold the stress of worrying about everyone elses needs and happines. Along with a couple of other comments I was blown away. While I was relaxing to the music the wedding march song came on and I started bawling. I would picture my beautiful 18 yo grown up just a little more and having all that wonderful, blissful happiness of starting a family. I never think about this kind of stuff. The same think happened in my Reiki session last month, but it was my youngest that I imaged in my mind. I don't not think about the future becuase of what is going on and certainly don't fear not being here. I have just gotten away from a lot of future looking and goals and whatnot. Sorry to ramble. It has definetly been one of those days. I sobbed on the way home to my DGF trying to explain it to her as well.

    So, I'm belly up to the bar, all snuggled in with my blanket and some powerful dripping juice coursing through me when this sweet little older man sits in the chemo chair next to me. The charis are not super close, but close enough. Then he starts coughing and I immediately go to my selfish, germaphobe self and think this guy is sick and they better move him. Well he sat there for a couple of hours with nurses asking about his "cold" and what symptoms he has had, etc. etc. Then when I am finishing up with the juice for the day I heard the nurse come in and tell him his test results have confirmed he has the flu and would he please put on this mask. OH MY!! Now I'm scared!! I know it can happen anywhere, but really this was the one place I thought I wouldn't have to be so fearful of the germs (can't call them insurgents because that is on reserve for the big "c"). Checked my temp a while ago and it is at 99.1. Damn!! I'm going to keep checking and hope all is clear.

    Smethot the waiting is so stressful. Now that everything is underway I am so relieved. Now I only wait and worry over whether my eyebrows and lashes will fall out and how the he!! I can make those up. Also have to worry about germs and getting sick. I'm so afraid to eat popcorn to this day because of Nancy's reaction in the beginning (it was Nancy wasn't it). Oh, and I am so using the pet hair attachment to the vacuum cleaner tomorrow. To tired tonight to drag it out. And please don't leave us for the February group. Where would we be without your witting sayings.

    Nikki, I will keep you posted on how it works. I started using it a week before chemo, and use it at least once a day. Almost to the point of needing to order another, but I want to be sure it works before dishing out that kind of dough again for a lipgloss bottle.

    Oliverhog as you know, yes it is hard loosing a parent. Oddly enough, when I would go to chemo with her sometimes I would see a daughter doing her moms nails, or the conversations going on around us. And I would think, gee I hope my mom is here to provide this kind of support when/if I go through this.

    For those that have asked and don't know about it yet, Brian Joseph's is an all natural gel that you use on your eyebrows/lashes to help retain them.

    Hope49 thanks for the reminder about writing everything down. I did this during my first treatment, but this treatment seems like my brain has already fogged over for good. I can't remember what/when I'm suppose to do certain things. I'vre eally had to concentrate on when to take meds, becuase there are so many to take at different intervals.

    Yep LeeA, I didn't have the steriod high either. :( Was a little disappointed by that one.

    InspiredbyDolce thanks for the BE tip. Now I just have to remember what it was. I made a list of notes of interesting things on the posts, and now that I am through all my notes I can't even remember what BE meant. Oh geez! This is way too early for chemo brain onset.sillyI have a list a mile long of things I wanted to be armed with during chemo.

    NHmom thanks for the tip on the olive oil (that I remember because what else would EVOO stand for? All I hear is Racheal Ray's voice).

    Zo you have no 'splaining to do here about work. Everyone reacts different and have different circumstances. Believe me, if I could squeak it out I would have had them put me on STD right away. I carry the health insurance though and would have to foot the bill for the full insurance premiums, while only getting paid 60% of my already stretched salary. I so envy you all that can stay home and concentrate on getting better.

    Well, good night all. It has been a long and eventful day.

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Paula, that is so sad. I am sorry you went through all that. Hugs, Colleen

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