Kiwi ladies who need encouragment, but all welcome.
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Awesome tattoo Helen! I hope you work is understanding of your situation and cuts you some slack. You've been through the wringer! Hey if you ever want to catch up for coffee (and show me the tattoo in person) let me know.
I finally got a response to my complaint re the MO. Addressed my concerns reasonably well, so I'm not going to take it further. Hopefully it's made him think a little about he approaches his patients.
I've been experiencing radiation-induced tightening on the left side, so got some Pinc & Steel funding for a couple of physio sessions. Definitely worthwhile.
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Hi guys, been very quiet in here, I suppose that is a good sign. I hope everyone is doing well. I don't really have anything exciting to report, just thought I would pop in and say hi, how is everyone
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Hi Donna, I've been meaning to ask that question myself! It's been a long time. I hope everyone is ok. I've been alright, noticing increasing side effects on letrozole unfortunately, more pain in wrists, my hair falling out, I keep finding it in the shower and on the floor, dry eyes and insomnia. Luckily I usually feel ok during the day after a sleepless night but it's a pain anyway. There's not much point changing to a different AI because it's 'the devil I know'. How are others finding these drugs?
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Hey hey Ladies - Yes it has been quiet. Not a lot going on around here, but a lot going on if you know what I mean.
Louise has a new job and started today. She was off work for a month in total, and that meant that I got zero time to myself, and was juggling her and a full time job. Thank goodness she's back into work. She's working in town, so I imagine that she'll be a tired young lady when she gets home tonight. She was up at 5.30am this morning, and left at 6.30.
Ben has 6 weeks to go before leaving on his Europe trip. Thankfully he's decided only to go for 7 weeks instead of staying there for 6 months (it was the cost of the working visa that changed his mind). He has been lucky enough to get leave from work so has a job to go back to which is awesome. I am much more comfortable with this option - He just didn't have enough money to wing it and support himself for an extended period if he couldn't find work.
I have been feeling pretty well - I am sick and tired of being tired though - these AL's certainly sap my energy. Good news though, now the zoladex is out of my system, my joints are so much better and I am moving without pain and that limp. I start my Uni of Auckland rehab clinic next month, which is 12 weeks with a personal trainer one on one to see if I can get some fitness back. I am looking forward to it but dreading it at the same time.
Love to everyone
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Hi Nikki, good news about Louise finding more work. That sounds like a better idea for Ben. My son Jeremy occasionally talks about travelling this year but has no concrete plans. He's good at saving money though and is working more hours, I would still prefer him to go back to studying. Maybe Semester 2. The Uni of Auckland rehab clinic sounds interesting, how wonderful to have a personal trainer! Is this through the Cancer Society?
How's everyone else doing?
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Michelle, I have the forms if you want me to email them to you. You just need to get them signed by your GP. Send me a PM if you want them.
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Hi, hope you're all ready for Cyclone Cook! Seems ok in Central Auckland now but the worst is yet to come. I wonder how everyone is, our thread used to be much more active! I'm looking forward to some cooler weather, it's still humid which isn't fun on an AI. Hope you all have a good Easter break despite the crazy weather.
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Hi Everyone. I hope that you all had a great Easter. I am loving this cooler weather. Since my ovaries came out I have been having some pretty intense hot flushes and so have been so looking forward to autumn and winter.
Not much going on here really. I had my medical evaluation for the Uni of Auckland rehab clinic, and I start there 3 times a week in a couple of weeks. I am not sure where I will find the time but it's so important for me to regain some fitness, so I will make it work.
Ben is really getting excited about this trip - only about 3 weeks to go before he leaves. Louise is loving her job.
I have my Oncology appointment in 2 weeks. Apparently they are not running clinics at Eastcare (just a minutes drive from home), I now have to go to the new infusion centre at Middlemore instead, so that will be interesting. I am seeing someone who I haven't seen before, a Dr Mesnage. I find that there is no continuity with one particular Doctor annoying, this will be the 4th one since I was diagnosed, but that's the public health system I suppose.
How are you all doing?
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Hi everyone - Easter has come and gone and tomorrow is the 1st of May - where has the year gone? We had a loverly Easter in Central Otago in the caravan. It was a tad chilly and got dark very early but on the whole the weather held out for us.
Im not doing too bad all in all - I have been having all those first anniversaries since my diagnosis and to be honest are having some pretty sad days. I am still with oncology as I am still having herceptin (5 more to go). So i guess they arent signing me off yet. I did contact the surgeon and have had my first mammography on my other lonely boob and am now waiting for those results.
I feel at a real standstill - am so wanting to make plans for the future yet cant while waiting for results and my every three weekly visits to the hospital. I have this pain in my neck that scares the heck out of me so I will be bring that up at my next visit this week.
Not sure if I am liking Letrozole but feel while I am on herceptin I cant rule it out as I dont know what side effects relate to which drug.
Optimist - Im the same dry eyes, absouluty exhausted but cant sleep at night. I have resorted to half a sleeping pill. I am like an old granny getting out of chairs but once I start moving I am OK. I am trying to have a walk each day and am trying tumeric capsules from the health shop. At this stage I have a grey afro going on so havent noticed any hair loss as yet. Very dry nether regions tooooo.
I did have a bit of a laugh though - with herceptin I get a horrible scabby nose that is actually really painful. I was reading that you can put vaseline on a cottonbud and put it on the scab in your nostrol. I didnt have any vaseline so used coconut oil - it worked so man is that stuff amazing.
Sorry for the moan.
Is was nice to run into you - Amusing Sorprano at the super market the other day - its a small world.
Take care everyone.
Helen
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I was thinking about our dear KT this morning and googled her to see if there had been anything in addition to the notice. I found this with a picture! I have always wondered what she looked like. See page 3
http://www.orama.org.nz/site/oramaoasis/files/pdf/...
You look great Helen. Hang in there, it does get easier I promise. The initial time after treatment was very difficult for me.
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Hi guys, sorry it's been so long. How is everyone going? It's getting cold again, thank goodness as it really helps with the hot flushes. I can finally sleep a bit better after not being able to sleep very well at all over summer. I don't really have anything exciting to report. I'm good, my kids are good, nothing exciting happening in my life at all but that's fine by me. Still waiting to meet my tall dark and handsome, although I wouldn't care if he was short, bald and ugly to be quite honest. I do have my 6 monthly oncology appointment at the Galbraith Building at Middlemore Hospital tomorrow, so that's different, I was going to the Botany Super Centre. I'm supposed to be seeing Sheridan Wilson and from what I can remember she is fabulous. Maybe we will bump into each other Nikki haha? Hope everyone is doing well, Donna xxx
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Hi everyone, so great to see the photo of KT Nikki. Thanks for finding it, she looks similar to how I imagined her. Nice to see your posts Helen and Donna. I hope your appointment goes well tomorrow Donna.
I went to the GP on Thursday where she promptly took my BP and found it was high, they had me lie down and took it three more times, still high. They sent me home with a BP monitor, and unfortunately it's still way too high. I go back at 2 tomorrow. I know high BP can be a side effect of letrozole. Is this what happened with you Donna? I've been taking it for nearly two years and have coped ok on it but if I have to take medication to control high BP because of being on it it's going to really piss me off. Does Tamoxifen have this potential side effect? Maybe I will have to switch to it.
Hope everyone else is doing well.
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Michelle. My BP went super high last August (during a premed for my ovary removal), I had had a really bad headache for a couple of weeks and my BP was the cause. It was 181/161. It stayed high and I was put on a beta blocker, 70mg at first then down to 47.5mg after a month or so. Previous to the high reading it had been stable for 18 months of monthly readings. I think it is a side affect of the AI medication (I am on Aromasin). My GP said that the hormone medication can do funny things to you. I feel a lot better on the beta blocker than I did before I took it. I felt like I was going to have a stroke.
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Hi ladies....I was feeling very bad that I hadn't logged in here for ages. I guess I just needed some 'Time Out' from a few things lately and every time I thought about you all and logging back in I envisioned having to catch up reading screeds of pages first. So good (and bad) to see it hasn't been very busy on here! I had been thinking about Kt too Nikki and when I clinked on your link and saw her picture I couldn't help but shed a few tears again. She was always soooo lovely and positive and our glue as we've all said. I feel she is now our page 'Angel' and giving me a big push to get my arse back on here and start writing!! Lol. I've missed you all too!!
I was so disheartened to read about Louise's job loss Nikki but awesome she now has something else. Relief!
Donna so sorry Mr Right hasn't fronted yet, or filled up all those water buckets with flowers you left out for Valentines, but hopefully he's in the process of winging his way towards you in the realms of fate!!
Michelle I hope your BP is coming down. At least you got it picked up before anything untoward might have happened with undiagnosed high BP. They will have to give you a drug to treat the hypertension or change your AI I guess. Let us know. Meantime hope you are feeling ok.
Helen - loving your tattoo! So awesome. Definitely plan the 2nd one if you want it. After all we've been through I think we're old enough to get as many as we want
. Hoping all your results are good. Hi Shazza - how are you doing?
Kat sorry I never got to see you when you were over but hope you enjoyed your holiday and plan to come back and see us again soon!
Hope everyone else is good. Hi to you all 👋
In March my hubby and I did a trip to Shanghai and enjoyed seeing some different parts of China too. On 10th May we are off to Las Vegas to celebrate my Dad's 80th birthday!! That's where he wants to go to celebrate or commiserate lol!! So have booked a helicopter trip out to the Grand Canyon, hired a convertible for 3 days and booked to see Celine Dion at Caesars Palace. I am really looking forward to it. Will be quite hot temperature wise now but maybe it'll make up for Wellington's non summer this year.
Like a few of you have mentioned I have been sooo tired and lethargic lately. I just feel very fat and lazy!! I am going to have to start some serious walking etc to get fit.
I have my bc checkups coming up in June again.
Today we are off to Palmerston North as my husbands Grandmother passed away last week- aged 94, and her funeral is today. Just a small private family affair. She'd been in a rest home for many years and had suffered dementia.
Anyway just wanted to check in and say Hi and I'll try and log in a lot more now that I'm back. Xx
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Hi Kruise, great to see your post, I was actually a bit worried about you. I didn't realise you were travelling, it sounds wonderful. And thanks Nikki for the info, I remember you saying that about your BP. It's not totally clear whether it's definitely the letrozole raising my BP (although I'm sure it doesn't help!). I've had some highish readings before I took it. Such a pain in the $&?!! I'm going to take the first tablet tonight, apparently the first one can make you dizzy, oh great . . .
Helen, hope you're slowly starting to get more energy and feel better. How is everyone else?
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Are you now on a betablocker Michelle? I have been since August last year. I have reduced the dose from 90mg to 47.5mg because I was feeling light headed. I am ok now.
I did my exercise endurance test yesterday at the Uni Clinic. OMG! Apparently I did quite well (not sure whether to believe those fit young things or not). I had to cycle 8km at 80rpm, with the intensity increasing every 2 minutes. I had ecg monitors on along with a face mask. They took my BP every 2 minutes. I won't go into the gory details but suffice to say the BP and pulse was getting up there towards the end! I start my programme on Monday.
Saw the lovely Sheridan on Tuesday at the 5 star infusion centre at Middlemore. I even got a private tour because I had some input into what we needed as patients (kind of proud of that tbh) . She wants a bone scan and a head CT (I have several episodes of confusion, along with nausea - could be the BP medication). I am not too worried, but I do know that I have been feeling quite crappy for a while now. Nothing like making sure that there is nothing going on.
Kruise - gorg to hear from you! Hope the rest of you are all good
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Hi Michelle...yep I'm still here and ok! Thanks for thinking about me. Hope the tablets are agreeing with you and you're not too dizzy etc.
Nikki it does sound like you did amazing with the biking. With how I'm feeling right now I don't think I'd cope with that. Best of luck with starting the programme on Monday!
Sorry to hear you haven't been feeling the best. I reckon the confusion and nausea is just hormone related! Now you've had your ovaries out too your body is adjusting again. Good to get it all checked out though. When are your scans scheduled for? Hopefully not too far away. Always a worry and horrible going back through the tests and stuff again. Amazing how we think we're ok but then either in the wee small hours of the morning or at the time our fear creeps in.
Hope you are all enjoying a lovely weekend x
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Hi everyone, nice to see what you are all up to. Nikki let us know when you've had those scans. This bloody disease, always making us worry. I went and saw Sheridan Wilson at Middlemore last week and she wants me to go back on Letrozole (even though it nearly killed me). She said basically I can take Letrozole for the next 2 years, or I will have to stay on Tamoxifen for another 7 years - so I decided to give Letrozole a try. I'm hoping it was the combo of Letrozole and Zoladex injections that made me feel so bad. Hope you travels go well Kruise, I must admit to being more than a little jealous. Hope everyone is good and not finding the weather too bad. Are you all ready for Cyclone Donna to hit, the boys at work are teasing me and saying Cyclone Donna is already here haha! Take care everyone, Donna xxx
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Does she want you to move back to letrozole because of having ILC Donna? So you won't need the zoladex? I must admit I feel so much better without the injection, and I am convinced that it played quite a big part in my overall side effects. Lots of hugs to you, I know you loathe the stuff and all it does to you, which I hope it is easy second time around.
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Hi again, yes Nikki. I think she's of the opinion that Letrozole is better for ILC which I already knew. So she called me last night to say my blood tests were in and I have very little estradiol/oestradiol, so I can stop taking Tamoxifen and start on Letrozole again. I knew it was working because I think I am turning into a man. I pulled a big black hair from under my chin the other day, I thought it was one of Jetts, our black labrador, but the bloody thing was attached and it hurt haha! It was about 2 inches long and I wonder who else saw it !!! I love that I am brave enough to tell you girls stuff I wouldn't tell my other friends
I am going to give my body a rest for 1 week and then start Letrozole. I am getting excited because I'm sure Tamoxifen makes me hungry, I'm just battling hunger all the time. So I am imaging that I am going to get skinny (not likely). Anyway take care everyone, Donna xxx0 -
Hi Donna, really hope letrozole is better for you this time. The problems you had before may well have been the combo with the other drug. Good luck with losing weight on it, everyone's different with how these drugs affect them. I started on my BP medication five days ago, Cilazapril, a low dose to start and then it will be doubled after two weeks. So far, no side effects! I don't think it's a beta blocker, it's a different type. Of course I'll have to keep going in and getting my BP checked, my GP suggested buying my own BP monitor. Don't know about that. My onc appt has been brought forward because of this, two weeks away. Nikki good on you with the exercise programme. When are you having the scans?
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The exercise is challenging, and to say that I am enjoying it would be a complete and utter lie. However, it takes 3 weeks to form a habit. I let you know if it becomes a "habit". Doubt it though.
Michelle, I have a really good blood pressure monitor that you are welcome to use for as long as you want. I don't use it anymore. PM me (I've forgotten your address) and I can get my hubby to drop it off in your letterbox. Don't buy one, they cost heaps - I used my flybuys for this one so 'd be happy if someone got the use out of it.
Brain CT is Friday 1.15 at Middlemore - I still haven't got an appt for the bone scan. That will take ages.
Ben is off in 11 days, yikes! Louise is still loving her job, so all in all, things are pretty good here :-)
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Hi All,
Catching up here... life has been super hectic as this year I will be in NZ 3 months and Pete 6 months, and we are getting our place ready for renters.
Michelle--sorry to hear of your issues on Letrozole. It's a tough drug. I'll report back if I have any side effects as I will be starting it soon. Seems like a lot of this group are on it. I hope you and Nikki are doing well on the beta blockers. Seems really unfortunate to have to take a drug to combat the side effects of a drug and then that drug has side effects too... I am currently still on Tamoxifen for now and have terrible dry eyes and insomnia... so I hope Letrozole will not be worse! Since you and Helen both have those symptoms, I wonder if it's lack of estrogens or the drugs. Probably both, I guess. The thing that scares me is joint pain. My hands were so crippled up when I was in NZ--had a really had time with the dampness. But I wonder if they would have been as bad had I not been on Tamoxifen?
Donna--I hope that this time around on Letrozole works well for you.
Nikkii--you are not alone... I hate exercise, too. I hope all your scans were clean and clear!
Kruise--your travels sound amazing. I was in Wellington a few days--got lucky with the weather, and other than the wind, the weather was pretty nice. Hope to meet you next time! and Helen as well.
Any news from Shazza? Hope she is doing well.
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Hi All, just thought I would let you know that the CT on my head is fine. Sheridan rang this morning. I love her and love that I didn't have to wait another 7 weeks for the results. I have had my appointment date for the bone scan. 26 June.
Nice to hear from you Kathleen. Are you still planning on getting your ovaries out?
Happy Monday everyone.
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Well that is the best news I've heard lately Nikki. I agree Sheridan is amazing, she is by far the best communicator and the most compassionate Onc I've ever had. so happy for your results! I am doing quite well on Letrozole so far, feel quite a bit better but I'm not being fooled as it could take a while for the real side effects to appear. Hope everyone had a nice mothers day. Take care, Donna xxx
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Excellent news Nikki!
I hope you are doing OK on the Letrozole Donna
Helen, it was lovely to see you too, you are looking very well despite ongoing treatment. Hopefully that pain in your neck is just a strained muscle.
I had my 3 month check up (2 months late as my surgeon is so busy and was also away at conference) and he says all good. My first mammo since diagnosis will be in three months - not looking forward to that! He will see what the mammo says and then decide if he wants me to have an MRI. He's also keen to look at fat grafting in about a year, to fill in the missing bit. I will if insurance will pay!
I also told him about the complaint I made about the RO who discharged me from oncology - and it was quite clear that he was not surprised. He said he was really glad that I made the complaint.
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Hey everyone - nearly 2 months without a post! I hope everyone is alright. All of my scan results came back clean, but I have been changed onto letrozole and had a change to my BP medication. Also, I am on the waiting list for a knee replacement - not too sure how long the wait is but at 50 years old, I might get bumped because they don't like doing them on "young people". However my knee is now bone on bone and it's getting very hard to do normal stuff like grocery shopping etc.
Ben is back from his travels next week. I can't wait for him to come home. Louise has just passed her 3 months at Grabone and is loving it, despite the 5am alarm going off.
I am still doing the uni gym thing, which is probably why I don't have as much time as I used to. 9 hours a week is spent getting there, home and doing the exercise. On top of a full time I have found it challenging. Having said that though, I definitely do feel a lot stronger and have more energy which is good. I just have to carry it on after week 12.....
Hope you are all well xoxo
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Hi Nikki, so lovely to see your post. What a relief your scan results must be. I hope you do well on letrozole, apparently it has a slight advantage in efficacy over the other two AIs. I have to be honest and say that the SEs for me have slightly increased over time (nearly two years on it) but the good news is I've found various supplements to help, e.g. cranberry for urinary frequency, Omega 3 for joint pain, magnesium at night for insomnia and possibly to help lower BP, and moroccan and argan oil mousse for my hair to make it look better and feel softer. I sometimes think it's a very expensive business having BC with all these 'extras' to pay for.
Of course I'm also taking cilazapril to lower BP. The only SE I've noted with this is a cough that comes and goes. I've used the BP monitor several times and it's really good though unfortunately my BP is still high. I've doubled the dose of medication now so I hope that will work.
It sounds like Ben's having an amazing time and has seen a lot in a short time. Good on you with your exercise programme. I saw my MO a few weeks ago, all was well. I'm having a clinical exam next month as an alternative to an MRI. I will push to have an ultrasound because I don't think clinical exam really can see much!
Hi to all the other NZers out there, how are you all doing? Michelle.
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Snap Michelle, i am starting on cilazapril in two weeks, after the letrozole settles, I was warned about the cough. I was on something else but it really didn't agree with me and I will be pleased to be off it. Thunder and lightning here right now, oh I love a bit of weather!
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How is everyone going? It's been very very quiet on here.
I have done a month on letrozole and the joint pain is much worse than on the exemestane. I will battle through, but it's a bit hard at the moment. Michelle, I couldn't tolerate the cilazapril, so I am back on metoprolol for my blood pressure. I have finished my 12 weeks rehab at Auckland Uni, and feel a lot stronger, so I have joined the GYM!!! Jeepers!
I am scheduled to have a total knee joint replacement on the 7 September. Counties Manukau are sending me to a private hospital to have it done, I guess they think I am worth it. Scary though, 6-8 weeks not driving and a lot of rehab afterwards. Hopefully I will be good in a year.
What's everyone else been up to?
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