• nikki replied to the topic Stage 3c in the forum Say Hi Here! 1 year, 7 months ago

    Good luck with chemo on Monday. Try not to focus on counting down your treatments because if you have a delay due to low blood levels it can get you down a lot and you’re left angry and frustrated.  If you do end up having delays with treatment, treat it as an opportunity for your body to build itself back up and use the time off chemo to do so…[Read more]

  • nikki replied to the topic Unmoored in the forum Anything Recurrence 1 year, 7 months ago

    I’m platinum resistant too!!!  So frustrating when that is the frontline treatment.  I know how you feel about the constant hospital visits.  I’m always extatic when I manage to go somewhere without having to see someone with a medical degree.  My partner and our 2 boys and I just got home today after a week at the beach and my doctor was lovely…[Read more]

  • nikki replied to the topic Stage 3c in the forum Say Hi Here! 1 year, 7 months ago

    Hi Susan,

    ‘I’m a stage 3 I was diagnosed 2010 and I’ve had 4 surgeries, radiation and 5 rounds of chemo.  Each time I start a new round there is something new to give me.  Ask your doctor about trials. I’m waiting for test results to see if I’m eligible.  When you are going through this you realise how fast stuff happens in the medical worl…[Read more]

  • nikki replied to the topic Hi I am susan in the forum Say Hi Here! 1 year, 7 months ago

    I’m on Taxol at the moment. This is the 3rd time I’ve had it. This is the one that makes your hair go and you’ll know when it starts because your scalp might start to hurt. Other than that Taxol doesn’t affect me at all.  Carbo made me a bit tired. I never felt sick enough to vomit. If I did feel queasy I took maxolon or ondanzatron.  I did alway…[Read more]

  • nikki replied to the topic Hi I am susan in the forum Say Hi Here! 1 year, 7 months ago

    Hi Susan,

    ‘What chemo drugs are you having?  Let us know and there should be someone here who has had it and can let you know about the side effects.  I my experience the chemo infusion suite is probably the liveliest part of a hospital. They can get quite loud (in a good way). You get to know the nurses really well and they are a great sou…[Read more]

  • Yay you finished chemo!!!  It’s such a good feeling.  I feel the same way about the whole poor neglected sister to breast cancer thing.  Clearly ovaries aren’t attractive enough to worry about saving.  What you need to do now if find something just for you, a hobby, a place to go enjoy a coffee, something that is for you and makes you happy.…[Read more]

  • You feel a bit lost when it’s all over but you also feel almost human again. I think it’s time for you to speak up. If you’re not getting the support you need from family and friends tell them, you’ll feel better. I had a similar problem with my now ex-husband. He did nothing to help beyond driving me to treatment.   I’ve been doing this for 7…[Read more]

  • Hi Annette,

    Face time or Skype their first day at school!!!  Best tip for after surgery is walk, walk, walk.  As soon as you can get out of that bed get out and stay out, you can feel your body heal.  Do the coughing exercises, they hurt but hold a pillow over your stomach to hold everything together.  Somewhere on this forum is a post by me and…[Read more]

  • nikki replied to the topic 10 Chemos in the forum Round 5 1 year, 8 months ago

    The MOST trial takes samples from my tumours and tests it against different genetic mutations to find a more targeted therapy.  They’re also doing a complete genome mapping of my blood to see if there is anything they can target there.  Meanwhile while I’m waiting for the results I have to go back on Taxol 😤. Fortunately I’ve had it twice before…[Read more]

  • nikki replied to the topic Hi I’m Annette in the forum Say Hi Here! 1 year, 9 months ago

    Hi Annette,

    ‘You sound a lot like me!  You will feel like you have very little control over your life and when the side effects from the last treatment wear off you will be left wondering what just happened.  I’m 37 and I’ve been doing this since I was 30. When I had my 2nd recurrence I was feeling very sorry for myself and shut out everyon…[Read more]

  • nikki replied to the topic Cancer Reoccurred in the forum Say Hi Here! 1 year, 9 months ago

    Good luck with the trial. I’ve just sent off a mountain of paper work to try get on the MOST trial for unresponsive cancers.   Let us know how you go.


  • nikki replied to the topic 10 Chemos in the forum Round 5 1 year, 9 months ago

    Like you Healthy Now, I’ve had a bad scan report but my doctor has finally found me a trial!!!  It’s called the MOST trial and they’re testing my tumor samples to find different genetic markers and my entire genome is going to be tested and mapped.  It’s incredible how fast medical research can move sometimes. There is always something new to try.


  • nikki replied to the topic Lyn in the forum Say Hi Here! 1 year, 9 months ago

    Hi Lyn,

    Excellent news that everything is going well.  Do you have follow up appointments every 3 months?  I have emulate appointments with my doctor and every 6 months or so I have either a CT or PET scan.  They usually have a care plan in place for you.  If it feels like you haven’t had a tests or appointment for a while enjoy it!  It’s…[Read more]

  • I’ve done gemcite with cisplatin and it was an evil combination.  I’ve just finished 6 chemo cycles with the neulaster and i have a love hate relationship with that stuff.  It caused me a weeks worth of agony but I recovered from treatment faster and I didn’t get any of the bugs going around work.  I finished my last chemo 5 weeks ago and I’m stil…[Read more]

  • Hi Clare,

    ‘There are so many different chemo drugs they can try. I’ve had anaphylactic reactions and dose reductions because my blood levels were pushed right down. I’ve had 2 month breaks in the middle of treatment to allow my bloods to recover and been on 5 different chemo drugs. They have lots of options. I’ve been doing this for 7 years a…[Read more]

  • I never had a problem with that but at chemo I have seen people put on the ice pack gloves.  I have found when I get to half way with chemo I know what will happen and when so the side effects are a bit easier to handle.  Fantastic news that you have a good prognosis!


  • Hi Lucy,

    ‘Haven’t had that one but my doctors have co side red it for me.  As for recovery, the best thing you can do after surgery is stand up straight and walk.  As soon as you can get out of that bed.  You will feel human and when you go for a little walk you can feel yourself heal.  Somewhere on this forum are my top 10 tips for surgery…[Read more]

  • Hi Mary,

    Welcome to the forum!  Hair loss depends of the chemo drugs you are on.  If you are on taxol and carboplatin it will definitely go.  The first time I had this it took about a month to go.  The second time I had this treatment it took about 2 treatments and it was coming out in big handfuls.  My third chemo was cisplatin and gemcite.  I l…[Read more]

  • My first diagnosis was in 2010.  Since the. I’ve had 4 recurrences, 1 round of radiation, 4 rounds of chemo and about 8 surgeries.  I have a 7 year old son and he keeps me going.  I hate having treatment but if it keeps me alive then that’s what I need to do.  Since being diagnosed I have a very different outlook on life.  I don’t stress abo…[Read more]

  • nikki replied to the topic Hi. I’m Angela in the forum Say Hi Here! 1 year, 11 months ago

    Hi Angela,

    That’s fantastic that they caught yours so early.  I believe it has a lot to do with your doctor.  I had abdominal pain, saw a doctor and nothing was done.  Nine months later they found a tumour the size of my baby’s head when I was having a c-section.  Since then then health system has been fantastic, I just had problems with the ini…[Read more]

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