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Higgsy's avatar
Higgsy
Member
22 days ago

Very confused

It is interesting reading everyone's journey's and trying to understand what's ahead. I tried going prepared to appointments with questions I found online but I'm always feeling pushed out the door and there is also an accent barrier so I'm still not clear. I have a bit better understanding in that it is the same cancer type er +, pr-and hre2- as last time,  when I had  lumpectomy,  radiation and oestrogen blockers. 2 years later it has recurred in the lymph nodes. I had 32 removed, 2 with cancer and 15 with cluster cells ( don't really comprehend that). The oncologist said that the odds for chemo stopping it coming back was low but as I haven't had chemo that is the only option to halt it. I couldn't understand the sort of chemo as I was reading all the info on types but now I'm more confused. I thought he said DC and the information sheet says TC but then the drug names as docataxel and cyclophosphamide. I'm having 4 cycles 3 weeks apart.  

Everyone mentions hair loss, eyebrows etc but is it useful in making leg hair go away? I'm in an admin role so don't know what to tell work as to what I can/can't do. 

Sorry,  lots of questions.  I don't personally know of anyone with cancer to quiz. 

3 Replies

  • Higgsy​ 

    It can all be very confusing, bit like learning a new language. Docataxel is often referred to as Taxol, which may explain the D/T mix. 

    Hair loss often affects the faster growing hair first - so, in my experience, leg hair went pretty quickly, along with underarm hair and hair on the head. Eyebrows and pubic hair later. Eyelashes were about the last to go and very fine hair on my arms wasn't affected.

    Unfortunately other symptoms are almost impossible to predict in advance. Nausea and fatigue are common and may make work difficult or impossible. I didn't have either and worked through six months of chemo. Depending on the type of work you do, it may be possible to negotiate a couple of weeks leave to see how you react to chemo - and then make a longer term decision. 

    Best wishes

  • If you haven't already been given contact details for a BCN at your treatment  clinic, You don't need a referal to speak to a mcgrath breast care nurse. You can find your local one  and the contact details on the website. They also have nurses on the McGrath  help line.  ( Also BCNA and Cancer council have free helplines too).

     I hope next appointment you can take a friend and list of questions, it is really hard. You can also ask permission to record it.

    there are so many chemos it is bizzare, differnt doses and combos, it will be tailored to your pathology , age, history etc. So trust  the doctor he is trying to give you the best outcome, and will monitor it, and things can change with chemo plans, so don't be surprised if that happens.

     

    Re work . Its up to you what you want to tell or not. Have a think who needs to know. Some people are fine and can work through, others need time off for the chemo and somethimes day 3 is worse than day 1 or two, but everyones body and treatment is different.

    I was told the  chemo  i had would definately make hair fall out, so BCNA had good advice to cut shorter  a few weeks before , and order a synthetic wig in advance,  so I had the colur highlights, fitting and style kind same as it was  was all ready fo rwhen it was time to do the head shave after second chemo. The chemo nurses gave me sheets with info and side effects  and go through it all with you. Its hard, but you want to have no regrets of trying to do whatever you can to kill  it and slow it down. Good luck hun.

  • HiHiggsy​ I am so sorry about the state of uncertainty you are experiencing- that’s unhelpful for you and your preparation for treatment. My breast cancer type was different to yours so the chemotherapy drugs and their side effects might vary. 
    Could you ask the doctor’s rooms and reception team to check and clarify for you, or possibly obtain a referral to a McGrath Foundation nurse to help you advocate (for absolute clarity)? 
    I was pleased with my GP’s foresight - he suggested I see him after my appointment with the surgeon and oncologist, in case I had questions that I was unsure about. Might you be able to chat with your GP so you can get clarity? 
    With side effects, it’s interesting how there’s a lot of variation in how different people experience side effects of chemo even if they’re getting the same results.

    Having said that my impression is most people who have side effects (maybe jet lag type tiredness, dehydration, loss of appetite, gastro or other conditions) experience it as a peak and trough  - with more heightened side effects coming upon us about 2-3 days after chemo (that might continue for five or six days) with these effects sometimes reducing by the middle week, and by the time you feel “normal” it’s usually time for the next dose. Work wise I decided to reduce my hours and worked part-time and worked my hours mid-morning to early afternoon. 
    Sending you all the best wishes for the information you need.