Kiwi ladies who need encouragment, but all welcome.
Comments
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Hi Koo. I was wondering how you were getting on.
I would have thought the report would be available by now. Can you ring your Dr to chase it up?
Sometimes it feels like you can't contact anyone directly, which is frustrating when you want answers
Fizzdon, I'm like you I prefer not to drive in rush hour, I find it frustrating being stuck in traffic. It does break the work day up a bit tho.... Hope you can work something out that suits, Kiwi.
Shazza & Twofer & Terre & anybody else who is stage IV, how often do you get scans? I'm having another CT in 4-5 weeks. My last one was Christmas Eve & I had a bone scan on 19/1 (& had a PET/CT & another CT since I was diagnosed st IV). So it seems at least 3 monthly I'm getting something. Seems a lot sometimes, but I guess it's good to keep an eye on things at least initially. Maybe they'll be bigger spaces as time goes on & if I remain stable?
Oh well, take care all
kt
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Thank you so much, kt1966. Have spoken with the doctor and they're going to chase it up tomorrow.
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Yay, Koo. It will be good to get that. I find not knowing is the worst.
Hope you get good results. Let us know how you go
kt
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KT I have had them every 12 weeks as well, which does seem a lot. I'm actually having one on Monday which will only be 9 weeks. Apparently they want to check that my new much lower taxol dose is working and tumour markers don't work for me. It has been the same very low this person doesn't have Cancer number since I was diagnosed, and I had wide spread mets. I actually feel fine so I think early is a bit of a waste of time. I would have thought that if someone had fairly reliable tumour markers and no symptoms they could push it out.
Now I have a question, actually 2. First is in regard to CTs as well. If you have them does the radiologist request creatine levels are tested a couple of days before? I've had several scans over the last 18 months but this is the first time I've recieved a lab test with it. I usually only have 3 weekly bloods which are always fine but the last couple have shown Pottasium etc a little high but only just. So this may be why. Can the contrast effect your kidneys?
2nd has anyone seen Dr Porter as their oncologist? It seems I've been moved too his team.
Edited because it helps if you post the right name
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Hi Koo, that seems very long! From memory it was immediately...they did a biopsy straigtaway when they found the suspisous bits, did have to wait about a week for the for the biopsy results I think.
Kiwi, I hated having a bald head...it made me feel like a victim. Just as well it's all temporary! Remember how weird is was to shave my legs again after such a long time
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Thank you so much, woodyhollow!
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Hi Shazza.
Good to know you're on a similar programme re scans. I haven't had any blood tests just for scans. I guess my 3 weekly tests are enough.
As far as I know all my blood results are ok, tumour markers still high but heading downwards.
I hope your scan still shows that the taxol is working. I guess the contrast does go thru you kidneys. My creatinine is checked before the pamidronate (part of that 3 weekly test).
I haven't had Dr Porter yet. Have you been moved or is it pot luck as to who's available. I never know who I'm going to get!
kt
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KT I don't know if I have changed teams or what the story is. Just that my appointment cards have always said Broom and now they say porter. I haven't seen Reuben for 6 months so I guess the name on the card is pretty meaningless. I'll probably just see Young Aaron again. Which is fine an I've enjoyed having a bit of continuity after 18 months of someone different each clinic
Koo hope you get your results soon. The waiting is definately the hardest part.
I'm off to Pilates and then work till 7 pm. Hope everyone has a great day
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Koo I was also thinking of you and wondered how you were getting on. I would be ringing everyday. The not knowing does your head in.
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Hi Koo, after my biopsy I had an appointment one week later to get the results. Waiting is extreme torture so remember what we said in an earlier post, kick up a fuss, cry, scream, get to know the receptionist haha!, do whatever you can to get results. Good luck and keep us posted.
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Hi KT,
I have a bone scan about twice a year and so far have had 3 CT scans in two years (one in January this year). I'm guessing that because I'm stable, they don't scan as often. Unfortunately, my original oncologist didn't do any tumour marker bloodwork, so we have no baseline data to work with. And my tumour markers have been identical every time. So we don't know if that means I'm stable or if my markers are just meaningless (as they are with some people). I see my MO about every four months.
And Koo....if I lived closer, I'd come do my Ugly American routine and get your scan results. I agree with fizz...
Hugs to all,
Terre
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Weird about changing teams,Shazza. You'd think they'd let you know...I guess it doesn't make that much difference tho. I was too tired to do my Pilates last week, and I'm working this week- so hopefully will get there next week.
Terre, it sounds like you are nice & stable. Keep it up!
I hope you get your results today Koo.
Hi everyone else
kt
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Paddle boarding again today. Week 4 of a 8 week course and so far the weather has been glorious each time. I'm really enjoying it although found it quite exhausting today as I think being back on chemo is finally catching up on me. I've enjoyed having little or no fatigue since my break but nothing lasts forever and this week I've felt like I've been hit by a bus. Still I'm enjoying having a sunny day off work.
Hope everyone gets to enjoy the sunshine at least for a little while today.
Koo, any news?
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Shazza I think you're so good doing paddle boarding. Where do you do it? Are they all ladies with BC?
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Fizz it's the pilot group for a program called Paddle On for Breast Cancer Paitents. I think they have groups in a few places but I'm doing it at Westhaven Marina. I think if it all goes well they will roll it out in a few places. Lou James who started Pink Pilates is behind it.
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Hi All. Just checking in to see how everyone is. We're having a slow, sleepy day at home today. Everyone is parked on a couch or bed with a book or device. I'm not sure when I'll muster some energy to think about dinner tonight ... might be takeaways for us!
My oophorectomy is scheduled for tomorrow. I think I'm last up at 4pm so I expect they will be running late. I stay in hospital for one night and then home to rest on the couch for a week. I must say I'm quite looking forward to a week of doing nothing!
Who else on the boards has been swapped from Tamoxifen to Examestane? I'm definitely noticing considerably more joint pain. My feet, legs, wrists all ache. When I stand up after sleeping, or sitting for too long, I feel like I'm 90 years old. It takes a while for the joints to warm up!
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KiwiMum can't help you with the Examestane question but Good luck for Tomorrow. I'll be thinking about you around 4 pm. Hope it all goes well and you recover quickly.
Lazy day here to. The 2 teenagers I have at home were both out till the wee hours and as a result didn't move till this afternoon. I went walking with friends this morning since then apart from 3 loads of laundry I've done nothing. Food bags arrived so I'd better unpack it and sort something for tea.
Hope everyone had a great weekend. I have a CT scan tomorrow so must remember my yummy chalky drink tonight.
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Good luck with the surgery Kiwimum, and good luck with the scan, Shazza. Nice day here today; good change from the violent storm yesterday! We needed the rain, but not that much that fast.
Hugs to all,
Terre
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Hi girls
We had a quietish day up here too. I did an hour or so of weeding & mulching, & helped my son de clutter his room (1 large rubbish bag & multiple bags of clothes & toys for hospice!)
We've just finished our takeaways, Kiwimum
I hope tomorrow's ooph goes well & you have a nice restful week off. (I haven't been on examestane either)Good luck with the scan Shazza. Hoping for good results too. (Do you get 'my food bag' delivered? my sister does that)
Hi Terre, next time send the rain up to me, my watertanks are still pretty low & the garden could do with a water!
Have a good week everyone
kt
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It's been dry here, too, KT, but decided to give us rain in bucketloads yesterday. It looked like someone was tossing huge buckets of water at the windows. Lasted about 20 minutes, then stopped for an hour, then went again, etc. Sounded like a freight train upstairs. And half the gravel driveway is on the main road now. Still dry here overall though.
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Good luck with your scan tomorrow Shazza.
Are you talking about My Food Bag? I was given a voucher for Christmas for a week of MFB. I've yet to schedule it but am keen to try it
That sounds like a lot of rain KiwiCatMom! We've had a bit of rain on and off but no where near enough.
Thanks for the good wishes for tomorrow
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Yep it's my Food Bag. We have been getting it on and off for since I was diagnosed Stage 4. I like it because I don't have to think about what we are having for tea and the kids can organise things seeing as I don't get home from work till after 7:30 pm 4 nights a week. We don't always follow the recipes but it's good to know there's always good quality protein and veggies in the fridge.
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Cool Shazza. Anything to make life easier I say. I wonder if you can get it up here? Or is it just an big city thing?
Thinking of you & Kiwimum tomorrow
kt
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PS funny how the weather seems to be all or nothing Terre. It would be so nice to have just enough of everything....
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I hope it goes well today KiwiMum and Shazza. I'll be thinking of you both.
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Good luck for today Shazza and Kiwimum. Thanks for the info about paddle boarding Shazza, you are really good doing that. I wouldn't mind trying something outside my comfort zone but I live so far out I could warrant it. I keep saying I am going to start walking but am so tired after work I usually just sit on the couch and watch TV. I am about to start another AI, and I'm pretty sure the Oncologist said they might try me on Examestane. I had alot of joint pain on Letrozole but tried to ignore it, definately felt like a 90 year old lady though and almost needed a walking stick when getting out of the car or off the couch. I haven't stopped Letrozole because of that however, it was the effects it was having on my heart and kidneys that was worrying and the terrible headaches. I have only stopped taking it for two weeks and can't believe how much better I feel already. I will find out next week when I have Onco visit at Auckland Hospital. Hope everyone has a nice week. There was a truck crash on the motorway at Alfriston this morning and it has just taken me 1 1/2 hours to get to work. Should only take 1/2 an hour. Happy Monday all
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hi ladies -
Shazza and Kiwimum - how did you get on with your hospital visits? Shazza I hope the scan results are good and Kiwimum that you are taking it easy and recovering well after the op.
I like the idea of My Food Bag too....I might need to investigate that further.
I need to have a big clean up like you did Kt in the kids room and get rid of stuff. I just keep putting it off as when I get the time to do that kind of thing - it's the last thing I feel like!
I feel for you Donna being stuck in traffic yesterday. It's no fun at all. There is a big accident on the motorway here today that's affecting all the traffic heading in and out of Welly. I wonder if that will affect you Terre going to work?
It's a beautiful day again today though and the first day I've had to myself for ages as the last two weekends I've been away in Palmerston North for St John training and last week up to Tauranga for sorting out the place for overseas guests etc staying. I like being busy but sometimes it's all a bit crazy.....
Have a good week everyone x
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Hi. I'm back home. Surgery went well. I spent last night in hospital and was let out this morning. It's always so nice to come home!
My ovaries, tubes and washings have gone to the lab for testing. The surgeon thought all looked fine but they test anyway.
I'm a bit sore and will spend the week resting and taking my painkillers.
How was your scan Shazza?
Kruise - you sound busy! I'm snowed at work and am going to enjoy this week on the couch!
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KiwiMum I'm glad your op went well. Scan went ok except for not being able to get a park anywhere near the hospital which meant a long walk and me being late for the scan and then work after. Guess I will get the results at clinic next Monday. I'm expecting they will be fine though.
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Hi Kiwimum, great your op went well. Have a speedy recovery- make sure you make the most of having time off & keep those feet up
Shazza, here's to good results for you. A bit of a pain re parking!
I've been naughty today. I bought my sister a lovely bracelet & matching earrings (light green beads & silver) for her birthday, but when I got home I decided I liked them too much & am keeping them for myself, & am wearing them right now! So, now I have to go back to the gallery & get another set for her!
Hi Kruise, sounds like you have been busy. Hard to find the energy for some of those boring jobs that get put off!
I'm really tired again this week. Saturday was a right off- no energy...but I bounced back for Sunday.
Hope everyone else is going well.
kt
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