Newbie from New Zealand

Rowan47

Hi there, have recently found this site and it's amazing!! Can't believe so many women have this awful disease...I was Dx about 8 weeks ago, with papillary invasive carcinoma, 25mm, grade 3, SN negative. Onc has recommended chemo, ht and rads. Have just sent sample to US for Oncotype DX test. Really not keen on the whole chemo thing! My cancer is quite rare, I think, so maybe not as much info out there as more common types.

I live in Christchurch (NZ) and we have been damaged by 2 large quakes in last 5 months (M7.1 and M6.3 plus over 5,000 aftershocks since September 2010!!). I am married with 4 children (19, 17, 15, 11). Feeling very stressed at the mo between quakes and cancer..

Just wondering if anyone out there has similar tpe? Or from New Zealand??

Racy

Hi Rowan

Let me be the first to officially welcome you. You post caught my eye as I am in Brisbane, Australia and am interested in things NZ.  I visited there in 2009 including Christchurch.  The earthquake situation is heartbreaking.  I was reading in today's paper that you are still having quakes as recently as yesterday.  It must be very traumatising.  (We had an earthquake in Queensland on Saturday too - very unusual).

You are right that this is a great site.  There are a couple of other NZ ladies on here so hopefully they will say 'hi' soon.  All the ladies on the site are so nice, helpful and informed.

Good luck with the oncotype testing and your treatment.   Hope to see you around on the threads. 

suzieq60

Hi Rowan,

I'm a Kiwi living in Oz - been here for 48 years but have lots of family over there. Was your cancer micropapillary or just papillary? Actually - just saw you are HER2+ve - are you? or have you made a mistake. I didn't think the oncotype test applied to HER2 tumours. I've had 2 lots of bc. ILC which was HER2+ve - chemo/herceptin/rads/arimidex and a second one that was micropapillary IDC - rads only.

If you are HER2+ve, not sure what your situation over there is for getting herceptin. I know there has been a big fight over it. I couldn't believe that this Women's health spokesperson reckoned it was a waste of money.

Anway, enough of my raving - welcome!!! Kia Ora!!

Sue

KerryMac

Hi Rowan, another NZ'er here, although I have lived in Canada for the last 14 or so years. There are a few others floating around as well. Hope you are all faring OK in the quakes.

Hope all goes well wIth your treatment, once you get a plan in place you will feel a bit more in control of things, and try not to get too far ahead of yourself - just take each step as it comes.

I don't know too much about your type of cancer except I think it has a pretty good prognosis. If you do end up having to do Chemo, it is not so bad - it is not exactly the most fun you will have ever had, but you will get through it. And you will find loads of support on these boards.

Anyhow, welcome! 

Rowan47

Thank you all for your fast responses! So geat to know such a sisterhood exists. Very comforting...Sue, I could have the HER2+ wrong, but pretty sure that's what onc said. He also did say that he wasn't sure whether they did oncotype dx on that sort of tumour. It is papillary, not micropapillary. Have to wait and see! Anyway, after great thought last night, have decided to go ahead with chemo. Onc said it may have already "jumped the fence" via bloodstream, so need to hit it now, I think. God, what a nightmare!! Thank you, Racy and Kerry, also. How nice that kiwis come together in crisis! Poor Christchurch is not looking so flash at the mo. Many buildings down, looks like a war zone in places.Actually, I was about to go into my first surgery when M6.3 struck, so had to flee hospital with hookwire in boob! Couldn't get it removed until 30 hours later, so...yeah. Our house was also damaged, so have moved about 20 minutes out of ChCh to our Ohoka property. Everything upside down at the moment. Anyway, off to ring onc and confirm starting date for chemo. Is it really doable????????????

suzieq60

Hi Rowan - Ask your onc if you will have herceptin - if you are HER2+ve it's a must!! The oncotype test can confirm the HER2 reading. Chemo is really doable - the herceptin part is a breeze. Make sure your onc gives you prescriptions for any side effects you get. The first one was awful, but once we could see what other medication I needed and got it, the following treatments were better. I did 6 x TCH and then the remainder of the year on herceptin alone. If you are to have herceptin - get a porta cath in your chest for the treatments as you end up having 18 all up - it makes it a lot easier.

I was very upset when the earthquake happened. Glad you and your family weren't hurt. We could have actually been there on holiday that month but my 2nd diagnosis put paid to that. I've been wanting to tour the Sth Island for years - like lots of Nth Islanders I've never been.

Sue

Rowan47

Hey Sue, thanks for the advice. I start chemo next Tuesday, 4 courses of AC then 12 weeks of paclitaxel. 16 courses all up. Sounds a lot to me!! When did you start to feel ill? Did you lose all of your hair after about 14 days?? Sorry to be nosey, just really want to prepare. Found a great book, "The chemotherapy survival guide". Very interesting and well-written. Are you feeling good again?

suzieq60

Hi Rowan,

I finished chemo a year ago in March, so I am well over it. My hair grew back just as thick but extra curly. I never lost all of my hair but most of it ie it was never shiny bald - light fluff only. As soon as it started falling out I went and got a No2 buzz cut done. Once you start the Taxol part, your hair may start to grow again.

The worst time of not feeling good was a couple of days after treatment. They should give you steroids and anti nausea meds to take before chemo. When they wear off, then it hits you.

It's really strange he's giving you ACT - it's normally only for node positive patients. You also really need to find out if you are HER2+ve. Because you are node negative you may not get Herceptin automatically over there but you have to try. I do know about 180 early bc women fought for it and got it. It's essential for HER2 bc. It's standard treatment here and the government pays $75,000 for it.

Sue

chicknz

HI Rowan, Guess you're in the middle of that bubble where life just doesn't seem as though it's real-what with jolly earthquakes and the nasty chemo. I'm in Auckland but have loads of friends that have been through the horror of the shakes and devastation. I lived at the Wigram Airbase about 20 years ago and have visited several times since so know the city reasonably well. I had a triple negative grade 3 pesty 0/7 nodes and was given 3 FEC and 3 taxotere then 25 rads. I am an Reg nurse with x 2 boys (13 and 8). It's scary at first and sometimes is during and if I'm honest it is still two years out. I'm available to chat if you need a shoulder from a 'local' Member of the Club. Thinking of you. 

lucky-

hi Rowan Sorry you have to go through all this, but hey chemo is doable I was sick a little from the AC but they give you lots of medication that works I found Paclataxol was a breeze with very few side affects then Radiation then Herceptin  Had to stop Herceptin as it started to affect my heart but got 6 months of it. My Ocologist said he thinks I had enough as i had it with Paclataxol You have to believe in your Oncologist as he knows best my heart is now recovering and I am feeling great. I live in wellington I have been to Christchurch lots of times as I have family there and Heart Broken about what you  are going througth especially at a time like this You be strong and Believe Can Do This Because You Can

  PS I had Breast Cancer    

Rowan47

Hello lovely ladies. Thank you so much for your encouragement and positive thoughts. I am going for my 3rd round of AC on Tuesday. First time was quite bad; up all night vomiting, so spent next day in hospital...they tweaked my anti-sick meds for my 2nd round, and only vomited for an hour. Took longer to recover though and feel "normal" again. Hoping this time we may have the right concoction! Things in ChCh still quite grim. We lost our house in the February quake, so have moved out to North Canterbury. We have 10 acres out here and a small house, so husband (builder) will be building our "big house" over the next year or so. Told him it must be single storey!!!!!!!!!!!!! Anyway, thanks again for all your thoughts. Look forward to catching up again soon.

suzieq60

Hi Rowan - good to hear from you. Are they giving you Emend - now that prevents you from throwing up at all. Apparently it's quite expensive. They used to give it to me before the tx and I had 2 tabs to take home for the following 2 days.

Do you know if you are going to be getting herceptin yet?

 Hang in there - it will all be a distant memory a year from now.

(((((((((HUGS))))))))

Sue

Rowan47

Hey Susie, feeling ok after 3rd round. Yes, gave me Emend but I still vomited that night - but only once, so heaps better. Also having Cyclizine, Motilium(Domperidone) and Dexamethasone. After the AC then 12(or maybe only 9) rounds of Paclitaxel. I hear it is much easier to tolerate than awful AC?? Then 5 weeks of rads and 5 years of hormone therapy(not sure name of this drug). Lost my (almost) waistlenght hair after 1st round. My oldest daughter cut it short beforehand, and I had one good cry in the shower, then felt fine!! Quite liberating in an odd way...still, looking forward to it growing back. How are you doing?? Do you feel well etc??

suzieq60

Hi Rowan,

Yes, I feel really well now. It's 15 months since the end of chemo, so I'm well over it. I still think you should investigate if you can get herceptin - it's criminal they don't have it as standard over there. Push it with your onc, it's essential for HER2 tumours.

Your hair will come back. Mine is just as thick as it was before but way curlier. I keep getting it cut to try and get rid of the curls. You might end up with curls too You will probably find it will start growing a bit once you start the taxol part of the treatment. I know a few women who had this happen. 

If you are past menopause, you will probably get Arimidex. If you are premenopausal, they usually prescribe tamoxifen for 5 years. I'm on Arimidex and it's ok - just like taking the birth control pill everyday.

Stay strong!!!

Sue

lucky-

Hi Susieq58 and Rowan I recieved herceptin no problem for my bc unfortunately had to stop it after 5 months because of reduced heart funcion my onnc wont put me back on it even though my heart function is coming back He seems to think I have had enough because I had it along with pacltaxol anyone else had this happen.Great news you have finished your treatments Susieq.  and to Rowan I found taxol a breeze and my hair has grown back curly and I too feel great I finished treatment last July all the best to you both

                                                               Lucky       J c malthouse
Diagnosis: 7/26/2009, IDC, 3cm, Stage IIIa, Grade 3, 7/17 nodes, ER-/PR-, HER2+

suzieq60

Lucky - you were node positive, maybe that made a difference. I hope Rowan can get it. It's approved by the Government over here at a cost of 75,000 to them but I know there has been trouble in NZ. Some woman's health advocate over there said it was a waste of money - I couldn't believe her statement!!!!

Sue

Alyson

Hi Rowan and others from this part of the world. There are quite a few of us around this place.

I am now 4+ years out and not doing too badly - have had a couple of hiccups but life is good.

Hope chemo is going OK Rowan? Please PM at anytime as it is a strange journey you are on and sometimes very confusing.  Have you been able to link up to a chemo group? I found this really helpful.

Big hugs to all of you

lucky-

Hi Susie it was definitly approved over here october 2009 by John Key, so she wont have a problem, I was greatfull for the 8 nz women who took pharmac to court and won  thanks to them its available to us

                        Lucky

suzieq60

Lucky - That's great, but Rowan doesn't say she's going to have it.

Rowan - have they offered you herceptin? Are you definitely HER2+ve?

Sue

KiwiMum

Just saw this thread and wanted to say hi from another Kiwi.



It's a bummer we had to meet this way!



Ive just had my 4th AC today. Moving onto weekly Taxol next, followed by rads later in the year. 2011 won't go down as a good year ... but onwards and upwards.

suzieq60

Hi KiwiMum - I'm a Kiwi stuck in Oz for many many many years - longing for home. One day I'll get back there. Where are you? Nth or Sth Island?

Sue

KiwiMum

Hi Sue

I read in the today that Chch is experiencing a big exodus - mostly people moving to Oz. Can't say I blame them. It's been a long time and must be very tiring, especially if you have young children.



I'm originally from Wellington but have lived in Auckland for 20 years. I've got two lovely daughters aged 9 & 6.



I'll be happy to move on to 2012. Not sure what that will hold, I've not yet had reconstruction so that might be on the cards.

Rowan47

Hi ladies, yes, Oz is looking good to me too!! Had a M5.3 last night. Children jumped out of bed and we all sat in lounge together for a while. Quite unsettling. Another 10 smaller rattles throughout the night. I am feeling a bit jaded today....4th AC next Tuesday and I am hoping hospital will be standing! The cancer care clinic that I attend (St George's Hospital) has a slope in the floor, cracks in the walls  and uneven surfaces and will have to be re-built at some stage. Praying for quiet day today. Hope all well with everyone

suzieq60

Rowan - stay safe!!!

suzieq60

KiwiMum - I'm from Auckland, I was born in Devonport on the Nth Shore but we lived in Massey when it was all still farmland. Where are you? My uncle lives in Remuera and my cousin lives in Birkenhead. I have many fond childhood memories of Big Manly and Orewa.

KiwiMum

We are in Westmere which is between Ponsonby/Grey Lynn and Pt Chevalier. It's a great part of the world!  I have family in Wellington, Taupo and Perth (Australia) mostly.

suzieq60

That is a good place to live!!! I do love my uncle's place at Remuera - he's across the road from the Orakei Basin.

Good luck with the taxol!!!! I had taxotere - not nice. The weekly taxol is a bit kinder.

Sue

Rowan47

Hi ladies, had my 4th AC yesterday. Didn't go that well, had vomited 7 times before bedtime!! Feeling a bit better today, haven't been sick again. I just don't deal well with drugs....would make a hopeless junkie!! Double checked with my onc nurse and I am HER2- so won't be getting herceptin. I will be on tamoxifen, I think. Start 12 weeks taxol on 19th July. Hoping for less SE with this drug. Hope all well with everyone.

suzieq60

Rowan - glad you checked about the HER2. I was worried you were positive and weren't getting what you need. Hooray!!! Still not good to have chemo, but you're getting there.

(((((((((HUGS))))))))))

Sue

Rowan47

Thank you, Sue, for your lovely hugs. I am (((HUGGING))) you back!! They really help...xx

suzieq60

(((((((((((((((((((((((((((((((((ROWAN - MOREHUGS)))))))))))))))))))))))))))))