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Cate64's avatar
Cate64
Member
10 years ago

VENTING

3rd AC Chemo cycle yesterday,  I have been relatively lucky not suffering any bothering side effects besides the hair loss as yet, my eyebrows & eyelashes are currently still intact, a little bit of fatigue around day 4/5 but that is it - so far!!...

They scheduled me for a chest port insertion 04/01/16, day 13 of my cycle when my Neutrophils would be at their lowest - how stupid, so it was rescheduled for Monday just gone 11/01, blood test Sat showed Neutrophils to be .8 not up enough for procedure so they retested me on the spot - lucky it came back at 1.2 so all went ahead.

Because of this was told I now qualify for 4 x injections to boost my white blood cells after each cycle & that it would start this cycle - only to get there & be advised by the registrar (or the ice queen as I refer to her) that she had spoken with my Oncologist who has said to reduce my treatment dosage by 15% as my levels were taking too long to come up. I was against this & made it known & requested it be recorded in my file.

Despite the poster announcing Outstanding Care re patient doctor discussions etc re treatment I was afforded non of it. No understandable explanation, no what do you think if we do this instead, this is how it will benefit you instead of the injections. NOTHING!! So annoyed & angry that concerns weren't addressed in any way..

Sorry for the long vent but had to get it out of my system, not that it is going to change anything.

 

 

 

7 Replies

  • Alsopt's avatar
    Alsopt
    Member
    10 years ago

    Another comment re port I've not had the balls to get mine out yet I'm glad I had one as my one vein they used for blood tests collapsed twice but my port line flicked into an artery with not as much blood flow so for the last 9 of my chemos it was an X-ray prior to chemo to check it was safe to go ahead I almost killed one nurse who suggested that I just go with canula or have port repositioned are they for real? I could hardly move some days I was also a pain in arse to them as my chemo was scheduled later in the day but took up to 4 hrs so they had to reschedule to earlier 

  • Alsopt's avatar
    Alsopt
    Member
    10 years ago

    Hi Cate yes it's very frustrating when the doctors/ nurses do not listen to you after all it's our lives.  I completed 4 ACs 2 of which I injected same drug you are referring to the day after I didn't like the bone pain I got and was relieved when I didn't have to do that as well.  I got through 9 out of 12 taxol chemo after that and lost feeling in my feet at that point I made them listen as I didn't want permanent nerve damage as well as all the other things I was told that they had given me enough I'm currently waiting to start radio.  I lost hair after 2nd AC hair started growing after 4th taxol but I lost my eyebrows eyelashes in the taxol time this week almost 3 weeks after last chemo lost a couple of toe nails but starting to feel a bit more like myself all the best my advice is to vent and also to question them I found some of my hospitals policies made us go through more pain then necessary I'm still all hunched with left breast expander just found that won't be replaced with saline boob for 6 months or so I tried to fight for film to cover breast for radio not policy at my hospital bla bla bla was told I could travel everyday for radio 130 odd km round trip urg I find when I can walking or re teaching myself to swim really help 

  • HIT's avatar
    HIT
    Member
    10 years ago

    Hi Cate  Vent away, sometimes I think we are just faceless lumps of flesh to some medicos.  I thought the injection was just normal after chemo, didn't know it was so expensive Brenda!!  So with all the drugs I have finally got something back from all the medicare I've paid over the years.  I wanted my chemo reduced (stopped would of been better) after the 6th dose, but they only would reduce it to correspond to my weight loss.. oh well .. done and dusted now.  It still amazes me that at first they were chemo can cause this and that, but now oh no chemo doesn't cause this, doesn't cause that ... ie they don't seem interested in listing the side effects apart from the well known ones.  And now I've ended up venting too!!

    Keep questioning Cate, the meek seem to just get trodden on.

    Pam

     

  • ChrissK's avatar
    ChrissK
    Member
    10 years ago

    Wow you have done well with 3AC chemos.... Ok my neutrophils fell to 0 after 1st AC chemo ended up in hospital due to infection etc. After veins collapsed ended up with picc line, the best thing ever!  I don't understand why they won't give you the injection? I had the injection after 2nd round of chemo and feeling ok but yes the bones do hurt after injection.  You know it's your body you jump up and down and ask questions and lots of them and go for 2nd opinion if not happy with first.

    Oh and ask for a picc line instead of port.

    Good luck, Chriss xx

  • Kim_R's avatar
    Kim_R
    Member
    10 years ago

    Hi Cate, you have every right to be annoyed. Luckily most nurses are great advocates for there patients. The injections work well to keep neutrophils up but they made my bones ache terribly. 

    Lucky you have kept your eyelashes so far so good, I did not loose mine, a bit thinner and lighter but hey still there, you have to be pleased by these small mercies.

    My last chemo was reduced my 15% to help my numb feet, I was told it was common practice and would not effect the affectivnes of the chemo. Still made me as sick as a dog.

    all the best kim

  • Cate64's avatar
    Cate64
    Member
    10 years ago

    Well that's what they told me after the first port insertion attempt, that I now qualify for it & I would be getting it the next cycle. That's partly why I am so annoyed...

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    Ahh skin flints don't want to spend the $3,000 each injection as that's what it costs. You should qualify for the government to pay  it if you haven't already got private cover.