Kiwi ladies who need encouragment, but all welcome.
Comments
-
Fizzdon. I see you are ER+. Most ER+ cancers respond really well to hormonals. Both AIs or tamoxifen. I took tamoxifen and had Zolodex shots in the past but after 10 years of them my oncologist thinks I may have built up a resistance so I'm doing chemo now.I think though they helped keep on top of things for a number of years and I got 14 years between my first diagnosis and being Stage 4. I know a lot of Stage 4 girls have a great response to hormonals and I'm hoping I will be able to go back to them at some point.
0 -
Hi Shazzakelly, It looks like you only get chemo if you have nodes involved. Do you know if your cancer spreads, is it still hard to find, is it still Lobular cancer of where ever the new spread is to? I have so many questions. I am meeting with my Onco doctors on Tuesday so am going to write down all my questions. Unfortunately I don't like my Onco doctors very much, my Radiology doctor however is lovely and she explains things much better then the Onco doctors. So I will quiz them on Tuesday. They probably think to themselves, oh no, here comes that pain in the arse patient who wants to know everything hahaha!
0 -
Hi Ladies
Rads is going well, 15/20. At home for the weekend (yay) and last week coming up. From there I will go onto tamoxifen. Boob a bit pink, wearing the Mepitel Film so I'm hoping that's going to be helping, can't tell at the moment. Feeling the tiredness and still sore from the chemo but coping well. Seriously looking forward to the end of treatment!
KT - OMG I had a tear in my eye reading your recent news. Sorry this bastard thing has come back. Sending you positivity's and some spare strength to you for your upcoming treatments.
Kruise - great you had a wonderful holiday! (pics please)
Aylson - how nice you had the chance to meet up with the ladies you have met here. I have made some lovely online pals from the states here on BC.org, I'm hoping to meet them too one day.
Fizz - I had no nodal involvement but my cranky onc made me choose to do chemo. I'm happy I have endured this now - just makes me feel better in the long run knowing I did everything I could. My rads onc is much nicer to deal with too. Different DHB and in the big city, so it's a bit of a factory but I'm really happy with all the techs and the treatment I have had there so far.
Keep on keeping on! Nice to see some more kiwi ladies on here. It has been a godsend for me and has given me some strength when dealing with the stupid comments and ignorance from people around me.
Jo
0 -
Hi Jo, I think you will find the Mepitel Film amazing. I had no burns or blisters or any of the horrible things that I've heard radiotherapy can do to you. I had 15 normal treatment and 5 boosts. I think we are really lucky in New Zealand that they are using this. They've never heard of it in the US I don't think. Regarding the chemo, from what I've learned they do tend to do chemo more with Ductal, apparently Lobular doesn't repond well to Chemo. My Radiology doctor in Auckland is Dr Brooks, she is amazing and explains things so much better than the Onco Doctors I have. When I had my Radiotherapy I worked full time the whole way through, I was even getting up at 5am to start work at 6am so the hour and a half I had to take to go to Auckland Hospital from my job in East Tamaki didn't affect my hours. It was really hard going and I had to drink V just to be able to drive home at the end of the day. I got through it though, although I hadn't just been through Chemo like you. Good luck with your treatment. You are nearly through it now!!!
0 -
just realised it's exactly a year since my most recent diagnosis and exactly 15 since my first. Man how time flies
0 -
Hi everyone, I hope you're all having a good weekend.
The sun is peeking out here, prob won't last long, but its so nice to see after all the grey & rain. It sounds bad up in Northland...
I've got the fire going so its nice & cosy here.
I'm glad your getting thru the rads Jo. Nice to be home & only 1 week to go, yay!
Thanks for all your well wishes, I'm starting to get used to the stage iv thing, but still have moments...
Today DH & I went & told my parents- they took it quite well, I did preface the talk with 'I don't want you to overreact, but...' so they held it together
phew. Anyway they're great & will be there if I need them.Tomorrow we'll tell the kids. Today one's at work & the others at a friends till tomorrow. Not really looking forward to that, but I guess it needs to done...
It'll be good to have a plan in place on Monday. The surgeon said she'd talked to the onc & I would prob be put on an oral chemo with 'bean' somewhere in its name (she called it its proper name
& I'm sure its -bine not 'bean') I had a quick google & figure it might be xeloda.I recall you had an adverse reaction to xeloda, Shazza, but that that's really rare...I sure hope so! I'm glad the current treatment is better & is working well
Anyway- have a great weekend girls
kt
0 -
KT, Xeloda and capecitabine are the same drug and yes I did have a terrible reaction to it. But there have only been 5 people in the whole world ever who have had that reaction and millions of people take it. I wouldn't be to worried if I was you. From memory it's meant to be a very doable long term chemo with people taking it and staying stable for years. I wish it had worked for me. Good luck with telling your kids that's never easy.
0 -
Fizzdon - if your cancer spreads it is still breast cancer. No nodal involvement usually means no chemo, you're lucky there was none in your nodes. It's hard when you don't trust your onc. I'm on Tamoxifen but will be tested this week if I'm indeed in menopause, if so will go on Femara - which has better outcomes for ILC.
KT sounds if you are over the first shock of it all...it's amazing how stage IV can be managed, and shazza you're an example to us all how it's not the end of the world.
Jo nice that you're nearing the end of active treatment. I found it a funny time afterwards, it's sort of the end of that rollercoaster ride of treatment (for a while anyway).
0 -
Hi Woodyhollow, because I wasn't in menopause yet they put me on Zoladex injections every month and that allowed me to go on Femara.
0 -
KT good luck with your Onc appointment today. Xxx
0 -
Thanks Shazza.
All done, it was a long day.
So I am starting xeloda tomorrow. Apparently I definitely have lung mets, the thyroid may not be bc as it doesn't usually metastasize there, but they're not worrying about that just yet.
I have to have another core biopsy of the lymph node tomorrow as they didn't get enough to test for Her 2+, yay- I just love big needles, not.
Tomorrow night I'm going out for a girls night out- yay- just what I need
for real!So, now its on to 3 weekly check-ups & we'll see how it all goes.
I hope you all have had a good day! I bought some pretty socks & undies on the way home to cheer myself up
Doesn't take much does it...kt
0 -
hey KT it's good you have a plan and a girls night out to look forward. I to had my thyroid light up in my first scan as well as my kidney. My Onc decided not to have them biopsied and both were clear by the time I had my next scan.
Good luck starting the Xeloda tomorrow
0 -
Sorry you had to have a long day today, but at least you now have a plan. Have a fantastic girls night out and there is nothing wrong with getting excited over some pretty socks and undies. Hope your first Xeloda treatment goes smoothly and the big needle is only a little one. Take care and remember we are all thinking of you and wishing you only the best. Hugs
0 -
hi everyone
kt have been thinking about you the past few days - good to hear you are getting straight onto treatment so no mucking around for you. Hopefully you will feel ok after tomorrow - you are very brave doing the girls night out!! Have you had a chance to talk to your children yet - did that go ok if you have? Isn't it great how retail therapy can distract us for just a moment. Good luck with the big needle tomorrow - close your eyes and imagine you are on that tropical island next to the pool with gorgeous men waiting on you with cocktails and canapés :-)
welcome Fizzdon - nice to have another kiwi lady in our Group but not obviously for the reasons you are here.
Shazza - so your 'cancerversary' for both was the same date?? Just 14 years apart? That's freaky...
Jo - fantastic you are on the home straight with rads. Glad it's all been going ok for you so far.
Midnight, Alison & Woody (hope I haven't missed anyone) good to see you all on here too - it's been quiet for a while but just goes to show when kt needed us - we were there. Hope Ange is ok - haven't seen her on here for a while.
I have had a cold since being back and also a really constant lower back pain and leg pain for over a month now. I know I will need to get it checked out at some point as it doesn't seem to be going away but I will get through the school holidays and hope it gets better. I keep over thinking it - but I guess that's what us ladies do. It's like I'd like to pretend it didn't exist but the pain is always there to remind me. I have had back problems in the past and honestly these days my whole body seems to creak and ache - I feel old suddenly! I know chemo & rads has an effect but also menopause too perhaps? I haven't had a period since chemo and so I'm well and truly into that - and I wonder what effects not having those hormones in my body has - perhaps the aches? My legs used to ache before I got my period (and I think that's when estrogen naturally drops before a period starts) so perhaps it is linked. I know I will have to bite the bullet and see docs about it all - but I would love just to wake up and feel like I did a couple years ago. No chance eh??
0 -
Yay, core biopsy done & it went well
if anyone ever needs to have one done I can recommend a good Dr- not only good at the procedure but caring as well.I'm glad your thyroid was NED after treatment- hopefully mine will be too, Shazza.
Kruise, I hope you get peace of mind re your back/leg pain- good to follow it up just to know. Probably its ok, but you're right, when you have bc you need to know for sure just so you don't waste time stressing!
We did tell the kids- they didn't seem too concerned- I hope that is the case & they aren't secretly worried. I guess they're used to me having cancer & dealing with scans etc. Its hard to know how much to tell them. I pretty much said its treatable but not curable but I plan to be around for a few years yet (not in those exact words!)
Hope you've all had a good day
kt
0 -
KT I hope the Xeloda is going ok. I guess it may take awhile for any of the SEs to show up. I seem to remember diahreah was a big one the nurses went on about but I only took it for 5 days and threw up most of the tablets so I never experienced that.
How was the girls night?
0 -
Hi Shazza,
so far so good. I've had a bit of mild nausea about an hour after each dose- but just before I take anti-nausea meds it goes away. I know the effects may be cumulative tho- so we shall see. The hard part is remembering to take X at the right time, because my days are all different at the moment.
The girls night out was good, just what I needed. Only 2 knew I had started a new chemo, but not why & the other 2 didn't know at all- so good to talk about normal stuff
(even tho I had to take my xeloda during the evening...)
Hope you have a good day, isn't it great to see the sun again
kt
0 -
a beautiful sunny day here for a change, I'm off to Pilates and then work. KT I'm sure it's been mentioned to you by your team but don't forget to sign up for Sweet Louise. A organisation dedicated to us stage 4 girls. You get heaps of vouchers you can use with participating organisations mostly cancer related. That's how I pay for my Pilates class.
Hope everyone else is doing well
0 -
Hope pilates went well Shazza. I usually go to pilates too, but haven't been for a while.
The breast cancer nurse at the specialists has sent my name to Sweet Louise, so I guess I'll hear from them soon. It'll be nice to have something nice happening
0 -
this is
this is my new car that my mum is giving me, she got a new one and wanted to give her old one to me, we picking it up in Whangarei this weekend, i have not driven for years,its a auto, mitsy lancer.
0 -
Midnight - the 'new' car is great and good on you for driving again if it's been a while. Are you flying up to Whangarei and then driving back? It's a fair way away for you?
I am teaching my 16yo to drive at the moment. She's doing good so far but is getting a bit over confident and going far too fast up to round abouts etc - feels like she's formula one racing when in the passenger seat lol so I am going to get her a few professional lessons too so she can undo the bad habits :-)
0 -
Fantastic Annette- I hope you enjoy your new car. Its a long drive up to Whangarei! At least its an auto, so easy to drive, it won't take you long to get back into the swing of it
Kruise- don't you just love that overconfident stage- it can be quite hair raising, your brave to ride with them sometimes! My daughter's had her learners for a while & hasn't bothered going for her restricted yet- she also has her motorcycle learners, so if she needs to go out on her own she takes her bike...not so good for wet weather or long distances tho.
My son on the other hand has his learners licence but hasn't bothered with actually driving yet! I guess I'm too much on hand to be the taxi driver- I'll have to do something about that!
I'm really pleased thus far about how I feel on xeloda- no significant se's, maybe a bit more tired but that's it for now. Going to see rad onc on Monday, not sure if I actually need rads yet, but we shall see.
Hooray the sun is sticking around- a bit frosty this morning tho.
Have a good day
kt
0 -
No we leaving Palmy at 2 and driving with Bil and getting some trade me stuff and he will drop us in Whangarei and come back and stay in Hamilton and we will stay with my mum and drive next morning back, i am a little nervous, but will get the handle on it, mum would like me to take a defensive driving course as well to show me how to keep safe.
0 -
It will be fine Midnight, they are good cars, I have one but its red.
Have a good day evryone
Big hugs
0 -
Yours must be faster Alyson - it's red!! Lol
Great Xeloda going ok so far kt. Touch wood it continues that way for you! My girl got her learners on her 16th birthday in May she was that keen! We live in a quiet grove so she sneaks off in the car up and down the street. She collected the gates partially on the bumper though too!! Hehe
Yes you'll have to encourage your boy kt - got to be done at some stage aye.
Hope everyone is having a nice night.
0 -
Sun's out hooray- amazing how much better everything is with a little sunshine
Hope you've all had a good weekend/week. I'm still going really well on xeloda (touch wood!) no debilitating se's...
How's the new car, midnight? Have you driven it yet? Hope you have lots of fun with it.
Jo, you must be well & truly done with rads now
Catch you later,
kt
0 -
Not yet KT. drove very well back, very tiring though. very foggy on desert road and raining, hard to see. hope you ok. thanks. IOur farm helper was getting some feed for animals and the back wheel came off four wheel fell off in the middle of on the round about, the cops said, it looks like it was tampered with. very dangerous if some body had been driving it at 100 ks on an open road. Police took tyer and nuts for further testing by there mechanic.the tyers were all new. our mechanic had just replaced them last week, and had to put spare one on. if it a joke by some body, dangerous one. not funny at all.
update, police say, that it looks like that somebody trying to nick tyer and got disturbed. How many people check their tyers each time they get into their cars to go somewhere, not many, why would you, unless it stood out. farm boy said he went to the loo and car ws unattended for about 15 mins, he hit the island and noticed the tyer rolling down the road, in a straight line, cop said the it must of been well alligned, just missed parked cars. right in the middle of town. scarey.
0 -
Yep done with Rads, back at home now trying to fit in to daily life again. Boob is itchy, red and tender. I am achey and reaaallly tired.
Glad this thread is active again. Hope you are all keeping warm, and well over the winter months?
0 -
Well done, Jo. Now you can start healing
Midnight! What a drama, scary alright. Glad your farm hand was ok.
I'm still going good on the xeloda- a few more aches & pains, but no real se's to complain of. Only 4 more days after tonight & I can have a week off
I'd like a fire tonight- just have to get my DS to go chop some kindling. We need to get another load of firewood soon- only a night or 2 left in the carport.
Have a good night
kt
0 -
Last day of xeloda this cycle
Yesterday DH & I booked flights & motels for a South Island trip for the last weekend in Nov/ first week in Dec! So good to have something to look forward to
So far DS is coming as well, not sure about DD- hopefully she will. Of course there is a motorcycling theme with racing in Invercargill & Timaru- but that's ok, its a good excuse to go. Just got to talk nicely to my boss now to get time off!
I hope you've all had a good weekend, sh*te weather, but its looking good today
kt
0
