January 2012 chemo

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  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited January 2012

    Hey Char~I also had to start quarantining myself..I picked up something my second week after my first AC... they are unsure if it is a head cold or nasal inflammation which can happen with the "C" portion. My WBC was ok, but I'm on an antibiotic now..with a loose SE...Gonna have to be a LOT more careful now...sorta the wake up call, I needed.
    Nalasta~My shots are every other Friday at about 4:00pm. 1st time:  Saturday there was only a few aches here and there, I took NO Claritin that time....the pain started Sunday noon, and by 2pm it hit for me. Pain killers that didn't do anything but make me sleep off & on for 2 days.
    2nd time I started Saturday morning with the 12 hour Claritin, as my aches and a few pains started earlier around noon Saturday. Took a Perc. last nite and slept well other than four Pee sessions. This morning I am starting to get the larger Pain and will probably be drugged up soon.  This time I will take the better pain killers, and not wait too long like last time. My SE's have mainly been about pain,...almost no Nausea to mention, no fevers, no vomiting, everyone is different...I'm going to end up shaving my hair because the pain of moving a one root is agony..it has just started to fall out noticeably this morning and the tail practically pulled off last night in the shower.

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  • DianeNMil
    DianeNMil Member Posts: 130
    edited January 2012

    Janetanned and Michele -

    I totally agree about the work thing. In 2008, after a unilateral mast and recon.....I was afraid to go out.  I am very independent and outgoing and I was very surprised by my fear and insecurity!!  I felt much less anxious when I went back to work. I think it helps to get away from yourself.

    Not sure Jane if onc wants to know about vomitting.  It came and went so quick that it didn't really concern me.  Cramps getting better  (:

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  • JoyceNYC
    JoyceNYC Member Posts: 88
    edited January 2012

    How have you dealt with your employers?  I tried to be upfront at the beginning about my situation and agreed to go out on short term disability since my surgeon recommended 2 months out of work; my oncologist has asked me to stay out one additional month so far.  It is very hard financially since $170/week doesn't pay the bills, but at least I retain my health insurance.  I don't know if my employer would let me work part time (with health insurance) or whether I will have to stay on short term disability the entire time on chemo in order to retain my insurance. What has been your experience, ladies?

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  • Janetanned
    Janetanned Member Posts: 532
    edited January 2012

    Joyce - I work for the health system that is treating me.  I've been there for 20 years and accrued the max sick time allowed (960 hrs).  I went out on a medical leave of absence for 6 weeks under AFLA.  This guaranteed my job security, but I had to use up some of my sick time.  The job security is most important to me.  I love my job and the benefits are terrific.  I could take up to 6 months off with full benefits, but loose the guarantee of my job being held for me (I think that is how it works). Fortunately, my boss is being great about this.  Unfortunately for him, he just lost his mother to bc, so he has been very kind and understanding (not typical of him).  I teach in a very small school for teens who are struggling emotionally.  We don't have subs, so my co-workers covered my classes.  They did ok for the six weeks, but probably wouldn't appreciate six months.  So, I went back with the hope that I can hang in there.  If not, I'll take more time and hope my job remains secure.

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    Hi everyone,

    I really haven't updated much after my first chemo back on the 12th so thought I would.

    In regard the what did I tell work - I'm in Australia so it's probably a little differrent to most of you and I work for a cancer clinical trials unit so I told them straight up. They have been very good. My  direct boss did go into panic mode the first week - I think she looked online at all the triple positive stuff and pretty much put me in the "she's dying" basket. Once I calmed HER down  and got her to concentrate more on what I will be doing NOW she has been better with no more talk  of major project handovers etc.

    As my workplace is part of a university I am lucky because I have an extraordinary amount of annual sick leave that I can take as well as them having a flexible workplace policy that allows for working from home (I don't teach classes or anything). So I've filled out the working from home application and had it approved and now can work from home pretty much any day that I want after checking with my boss (who, as I said is good now).  So, I took 3 days sick leave after my first tx (Fri/Mon/Tue), worked from home Wed/Thu last week and then went into the office for the day on Friday. Next tx I'm planning on 1 day sick leave (Friday) and work from home Mon/Tue and then back in the office.

    Anyway, I think I'm doing OK after this first FEC... The first few days were pretty bad. The Friday I think I was more emotionally sick than physically sick. Then I wrenched my brand new port Friday night and had to take a trip to emergency Saturday  morning to have it x-rayed and re-accessed to make sure it was OK.

    After the Emend and Kytril ran out after day 2 (which was Sunday) I hit a bad patch of nausea as they'd only given me Maxolon to cover from then on. But on Monday morning I went to my PCP who gave me a different drug that worked and I"ve been good since then.

    I'm thinking that my mouth has reallly been the worst SE I've had. I did something stupid (had blue cheese) the first day as no-one had told me not to. Ended up with immediate thrush on my tongue that needed a visit to the PCP (again) and days of horrible tasting drops and rinses. It's all clear now and I've just got a dry mouth so am looking after that carefully.

    Went out to a party at a friends house on Friday night and had a couple of red wines which was great. Hubby and I worked out that "everything" still works in the intimacy dept that night too, so I'm a little relieved at that! (sorry if TMI...) ;-)

    Went out to the movies with hubby last night which was a bit scary in terms of being nervous of catching anything. But we went to the Gold Class session (small theatre with couples recliner seats far apart from the other people) and I used lots of anti-bacterial hand wipes after I touched anything.

    I've been walking pretty much everyday after tx which I'm really proud of. I'm determined to get this slack butt back into shape to fight this thing.

    Today is day 11 for me. I know that more hairs than usual are falling out each day, but nothing significant as yet and the other hairs in other places are still hanging in there too. I wish the underarm ones would hurry and go because I'm not supposed to use a razor and don't have an electric one - and it's summer here... I'm assuming I'm going to have to get hubby to buzz the head hair in the next few days...

    I've been reading everyone's stories - it's just hard to post usually because I'm on my iPad which is a pain to type on. It sounds like on the whole we are all going OK.

    Good luck to everyone this week.

    Lot of luv Jenn

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    Joyce - I told my manager and her boss (the dept Director, who used to be my boss) as soon as I found out. I work for a large Blue Cross/Blue Shield company, so I consider myself very lucky. I have great benefits (although they're NOT free - much to everyone's surprise). I've accrued 200 hours of vacation/sick time and 6 weeks of 100% disability pay (of which I've used 1 so far). I've been allowed to work from home a lot - again, I know I'm very, very lucky.

    I'm hoping my WBC went up over the weekend. I get another CBC tomorrow. If WBC is up, then I can un-quarantine myself and actually go in to work 2 days this week. I need to some human contact.

    Hope everyone does well this week.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012

    Janetanned - thank you for sharing your thoughts about your daughter.  Mine just left, after spending the afternoon with me snuggled on the sofa.  She's 24, just graduated with her MBA, owns her own home, works in corporate taxes, has all these dreams and plans...and I can't help but wonder what's coming for her down the line?  I can't help, at times, but feel like I have done something, even though I know intellectually that I haven't.  For her, she faces the unfortunate fact that her birth father's family is also rife with breast cancer:  two of his sisters, his mother, and his grandmother.  What have I done?  Sometimes, those bad days just feel so much worse...

    Shell-seeker - thank you, too, for sharing your hair story!  I have been saying all along that I won't care when my hair is gone, blah, blah, but now that the time is coming and almost upon me, I know that it won't be that easy.  Your story helped me know that I'm not alone in grieving the loss of something that will come back.  I tell myself that my hair has offered to give itself up so my body can focus all its energy on healing, instead of trying to produce non-grey hair for a while.  Smile

    I talk about my "new family" often, and feel as though I know so many of you personally.  Thank you all for being here, for sharing this journey, for being supportive, and for loving life enough to keep enduring, even when one more minute seems difficult.  I send blessings to each of you every day; you are never far from my thoughts, or my heart.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012

    Joyce:  I'm in an unusual position employment-wise.  I was laid off two years ago after 16 years at the same job (no, there was no compensation package, either).  I had been in school part-time so I decided to finish my degree full-time (I'm 48, not getting any younger, might was well take advantage of the situation, kids had all left the nest, etc.)  My DH has insurance, so we were lucky in that department.

    I graduated last April and immediately started grad school.  The University offered me a graduate assistant position, which pays a small stipend and all of my tuition, and I work for them roughly 15 hours a week.  I also had a part-time foster care job with my old employer, which after much thought I quit (this is going to be my last week - lots of physical driving and lifting young children, who are often quite sick).  The University is offering me flexibility in hours, and my instructors are kind and flexible, too.  Many people at the University have some personal or close experience with BC, and so far they've been very kind and generous. They heard I was leaving my other position and have offered me an additional few hours a week as a thesis editor, which I can do at home if I want.   

    Financially, it's been really tight for us, but we get by. Honestly, if I were still in the same job I was two years ago, I don't know that I'd be in such a good place - I don't think I'd have as much flexibility and time as I do now.  I'm not sure my employer would be able to be generous with disability or time off. 

    Sometimes I wish I was working full time because it would be nice not to be struggling every minute financially.  We made the decision to call a few creditors and explain what was going on, and so far they've been very accommodating and generous in trying to help us restructure a few things.  I don't know how long that'll go on, but every day is helpful.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012
    Jennt28 - thanks for the TMI!  My husband will be glad to hear that "life" goes on.  Right now, I can't stay awake past 8:30, let alone think about what I could be doing if I was awake.  :-)
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  • Janetanned
    Janetanned Member Posts: 532
    edited January 2012

    Nancy - Have you had any genetic testing done?  My NP who I met with before this last tx, asked about testing.  She thought that I should go through with it since it might make a difference in how I get followed and how I handle the my other gynecologic screenings.  Both my mom and sister were diagnosed with BC.  My mom's was caught too late in the 70's.  My sister was diagnosed 6 yrs ago and is doing great!  She had the testing done and came up negative. 

    However, testing has changed and the NP felt that I should try the newer tests.  So, I will.  I want to know so that my daughter can be screened earlier in life if it is a genetic possibility.  I know that guilty feeling!  However, having had a mom with BC, I never once thought it was her fault that I might/and did develop it.  Her experience did teach me many things in life though!  I watched her handle her illness with so much grace.  I also realized that I need to talk to my kids about what is happening.  I don't want their lives to be turned upside down with this!  I'm not certain that I can pull that off.  I can see the upset in their faces, each in his/her own way already.

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  • CJRT
    CJRT Member Posts: 524
    edited January 2012

    Nancy-  I know that your clients will be lucky to have you. Going through this also will give you a unique perspective as a social worker. At least that's what I tell myself because I'm in the mental health field, too! :)  I know how tough it is without full-time pay (I am working only very limited hours from home), but it is great that you have grad school covered plus the stipend.  I know how hard it is to come grad school financial assistance in the mental health field.  I'm also glad everyone in your program is being supportive and that your daughter is close by for support. 

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012
    Janetanned:  My doctor started the genetic counseling process, but because of my age (over 45) and lack of history of cancer in my family, my insurance company wouldn't pay for the testing.  The genetic testing company says there is between a 0.8% and 8% chance that my cancer is genetically linked.  However, this opens the door (very wide, too) for my daughter to be tested.  Hopefully, too, for my sister.  I encouraged my daughter to consider it today; she's not certain if she wants to.  I'll continue to suggest it when it seems appropriate.  
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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012

    CJRT - thank you!  I love being a social worker; I'm certainly not doing it for the money.  My parents were both seriously ill and had surgery earlier this year, and I thought briefly about medical social work.  Now that I'm involved in all of this, I've decided to switch concentrations from child welfare (where, after 18 years I've finally realized that things just aren't going to change, and I love macro work but can't be a bureacrat) to medical social work.  The more people I meet in this field, the more I realize it might be time for a change.  I believe in being open to possibilities, even when it's a strange, winding road that brings us here.

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited January 2012

    Hi ladies, I've been reading through your posts for several weeks as I've known chemo is next, but I'm still not sure if it will be Jan or Feb. I would love to be part of your group even if I slide into Feb. You've given me so much insight and I've come to know you through these pages I'd like to stick with you if you don't mind. I will have 4 DD of A/C and then 4 DD of taxol. 3 days before my lumpectomy I learned I'm BRAC2+, so I will have a BMX and ooph when treatment is over.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2012

    Well, I had to have surgery again because of an infection in my te and had to have it removed.d now have to postpone my chemo. Guess I will have find the Feb board, I still need my port placement, although I now have a picc iLine! class='post_sig'>Moonflwr912
    Diagnosis: 12/8/2011, 1cm, Stage I, ER+/PR+, HER2+

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  • Kite
    Kite Member Posts: 265
    edited January 2012

    Hi ladies!

    Hope everyone had a great weekend. \My step daughter broke down and started crying and telling me she was scared of me changing. I tried to tell her I would be back to myself soon and nothing was permentant except the new breasts. She just broke down sobbing and then so did I. I just held her a bawled like a baby. Mostly cause I can't make her understand that I am going to be OK and that she still has her Momma Katie. I will admit though, being sick from the Chemo doesn't make my coping skills very good. This is by far the hardest part of this experience. I miss my husband so much. He is hoping to be coming here for a week in Feb. My boys miss their dad and I miss my best friend.

    Anyways, Moving on! Off to a new week with hopfully a lot of good days. This is my last feel good week before my 2nd treatment. Head is getting shaved, have a quiz, readings to do, math homework, house to clean, and children to wrangle!

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    So I went to the store this afternoon to buy some new pretty underwear (we all need that sometimes huh?) and at the first counter I paid using EFTPOS without a problem. Then at the second counter the stupid machine told me three times my PIN number was wrong and then locked the card....



    So I put the purchase on credit ok and headed for the bank - thinking OMG I have chemo brain and I've forgotten my own PIN number :-(



    Got to the bank and the woman there tells me that the same thing has happened to a few other people today and it is a bank problem and showed me my card was actually ok.



    So all that panic that I'd lost my brain - and I haven't. But maybe I'd better write my PIN number down in case I really do forget it later....



    Jenn

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  • Judy67
    Judy67 Member Posts: 361
    edited January 2012

    Hey guys,

    Just checking in.  I'm now 13 days post 2nd tx and I feeling great again.  One bright side to this whole thing is how much I appreciate feeling good.  Now trying to think of things that might help with SE's next time.  At the women's health seminar I went to, the Dr. speaking mentioned that zinc L-carnosine can protect your sense of taste and your mouth tissues from the effects of chemo.  Ordered some from Amazon today as I couldn't find the combination needed in the health stores.  I'll let you guys know if it helps.  My taste is slowly returning again like it did last time but I'm worried at some point it might not return. 

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited January 2012

    Jenn28 I put my pin number in my cell phone as if it was a person.  I name it  Penny .  I make up the first 3 numbers and the last 3 are the pin. 

    Peggy 

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012

    I've discovered two distinct yet annoying SE's - chemo brain, and constipation (sorry for the TMI).

    I have had several conversations this weekend where words came out that didn't make sense (I told my daughter to drink her computer - I meant her tea), and I lose my train of thought.  My husband is being very patient.  I'm finding it hard to concentrate, which doesn't help when I have homework!  I know it'll get better; it's just frustrating.  And after reading previous posts, I have now stored my PIN number in my phone, too.  :-)

    As for the other SE, I'm debating between calling the doctor or simply buying a laxative.  Nothing has moved since Thursday evening (and it's now Monday morning).  I'm not eating as much as usual, but this long isn't usual, either.  I don't *feel* constipated, I just am.  I'm hydrated, eating fiber, avoiding cheesey stuff, etc. - nothing.  I have IBS and am worried about a laxative causing lots of pain or other problems, but I don't know what else to do.  Any ideas?

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    Nancy, I've been taking a Coloxyl/Senna tablet each night before bed and drinking about a third of a cup of prune juice each day since the day before my first tx.



    My MO recommended this as she said that it's easier to deal with diarrhoea than constipation during treatment...



    Jenn

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012
    Thanks, Jenn - great idea!  I've been taking Dulcolax all weekend, nothing.  I have prunes in the fridge but when I tried one I could not get it down - taste must be changing.  I hadn't thought about juice though - I'll buy some tonight.
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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    Oh for heavens sake...



    A blood blister (?) just popped up on the inside of my cheek this evening. Out of nowhere - it was just suddenly there. Just when I thought the SEs were over for this first cycle...



    I have been sooo good with brushing my teeth and using the mouth rinse :-(



    It doesn't hurt and I did a search on here and found several people on the boards who had posted they had this, so I'm not going to panic tonight - I'll wait till morning before I panic?



    Jenn

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  • Momof2inME
    Momof2inME Member Posts: 683
    edited January 2012

    Kite.... Hope this week is good for you and so glad that you were able to be there for your daughter.

    I have felt good for the past 4 days now off to my 2nd A/C treatment this morning....We shall see what this week brings for SE's.

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  • momof3boys
    momof3boys Member Posts: 896
    edited January 2012

    Hi Nancy

    I have 3 boys and a busy household, and have also found myself saying the wrong "word" at times, which makes my boys giggle and obviously makes me nervous. Ive also done things like: light a candle and put the match box away in the fridge... I think it's a combination of being so preoccupied mentally and chemo and all of the other medications that we're not used to taking.

    Please take something for the constipation! My MO suggested Senocot and Colase (although I did not have this SE, just the opposite, actually). And I'm sure you're drinking lots of water. Don't let it get to the point of needing a suppository. I went through that after child birth and I think I'd rather go through labor than that again.

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  • ely136839
    ely136839 Member Posts: 30
    edited January 2012

    Good morning! Today is day 13 and tomorrow I will go for my 2nd A/C treatment. I noticed today that my hair is starting to come out-ugh! I knew it was going to happen, but I kept hoping that it wouldn't be until a lot later. I'm hoping it will be ok for a few more days without being too noticeable so I can get through a few more appointments without needing the wig. In addition to the 2nd treatment tomorrow, on Wednesday I have an appointment with the plastic surgeon for a follow up with the reconstruction and then I will have the Neulasta shot. I really am not ready for the wig. I tried it on again and I don't like it. It is not my natural color-it is similar, but with highlights that I am not used to, it is also a bit shiny for me. I was told I could spray it with some dry shampoo to take away some of the shine. I do have some hats to wear that my 17 year old son picked out, but I'm just sitting here feeling sorry for myself. I know it could be worse and I thank God that it is not, but it just sucks! I don't know about shaving my head yet and I guess I will see as this progresses. I'm going out to lunch today with a friend I haven't seen in awhile so I'm hoping she will make me feel better.



    I hope everyone has a great day!

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  • AnnStAug
    AnnStAug Member Posts: 8
    edited January 2012

    Day 13 for me and hair starting in come out. I started to feel a little tingling last night and sure enough this morning a little came out. Not a lot just like when the stylist thins it out in one pass with the razor. Nothing to be afraid about ladies.

    I have had minimal SE's but have been resting up and following all the advise I read here in the discussion. Hope everyone has a good week.

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  • SleeplessIn
    SleeplessIn Member Posts: 114
    edited January 2012

    Happy Monday everyone!!! 

    Judy 67,
    Can you please elaborate a bit (in terms of dose) on the L-carnosine you are going to take. I love food, and the thought of potentially losing my sense of taste long-term scares me.

    NancyHB,
    I don't understand why your insurance company would deny to pay for the genetic testing. From a logical point, shouldn't it be exactly a "case" like yours, where there isnt an obvious family history, where testing should be covered?!

    Jenn28,
    Good for you, that it wasn't your memory, but the bank's fault.;-) I wasn't as lucky filling out an onlline order yesterday, I could not remember the last 2 (of 4) digits in my address. Total brain freeze and very scary.

    Janetanned,
    Hats off to you for not taking a leave from school. I have stopped volunteering in my older son's classroom, and have been keeping my younger son home from preschool since just before my surgery in December, because I am so scared of catching another bug. I cought the last one my son brought home from preschool, and it took me 3 weeks to recover, plus I also had to postpone my surgery. - I hate having to live like a hermit, and especially for depriving my children of some of their regular interactions, but I decided I can be selfish for once in my life, and to do what is best for me (although feeling guilty about it).

    Wishing all a good week, with few, if any, side effects and tears!!!

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  • Pat989
    Pat989 Member Posts: 4
    edited January 2012

    Hi Everyone.

    I'm on TC(carboplatin)H x 6 with hercepton for a year, rads, then 5 years of hormone therapy.

    I had my first cycle Jan 5th and exactly on day 14 the hair started coming out.  Not too much at first, though.  Day 15 was worse, and day 16 it decided to let loose so I kept it in a hat until I could go get it cut off.  I really wanted to save my ponytails.  I know it's just hair, but it so much a part of our identiy that it was rather tough to sit there and have it cut off.  I've got a rather ugly 1/2 inch to inch (depending on how closely they cut off the ponytails) which is just falling out everywhere.  I;ve decided to just let it fall out instead of shaving it off for now. At least I have my ponytails which I inend to hook onto a headband somehow so I can twiddle it.  I am an insessant hair twiddler and have been having a hard time not being able to do that while I read.  Sigh....At least now nobody can say it's bad for my hair :-)

    I cannot thank you all enough for sharing your journey.  It helps me to know I've got company and I'm learning so much from all of you.

    Cycle 2 is Thursday and I think I'm ready for the SE this time round.The Neulasta shot threw me for a doozie last cycle.  Just hoping it's not as bad this time round so I can get back to work on time.  

    Today was the first day at school with my new headcoverings and I had to field questions from students all day.  Let me tell you, small children have no problem asking the most interesting questions!  I'm hoping tomorrow will go smoother.

     Wishing everyone a day with no SEs!

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  • JoyceNYC
    JoyceNYC Member Posts: 88
    edited January 2012

    Welcome, Pat.  I have the same 1/2 of hair after I buzzed it on Friday (I'm now on day 18 looking ahead to tx on Friday).  Mine hurts - even as it's falling out!  I also had a bad reaction to the Neulasta but taking claritin really shut it down amazingly. 

    Hang it there -- we'll make it together!

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