Kiwi ladies who need encouragment, but all welcome.
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Hey Amber.
Good to see you. I had a difficult time with my very first chemo, my neutrophils were about 0.90 if I remember rightly (sores all over my mouth, couldn't even swallow water and an awful infection in my port site). They fixed it me with antibiotics and after that I was good - it never got that low again, and I never needed to go back to Acutes again. I am not special I just think that you need to listen to your body, it will tell you what you need. Rest when you need to - typically that was on about day 7 after chemo for me, but we're all different. I used to collapse on the couch for a while a couple of days after work but after that I was fine.
Yay, you've only 5 more FEC-T to go. Herceptin is not as hard (so I am told, more targeted than FEC-T). I took one chemo at a time and dealt with it without looking forward to the next one. You'll be good, just take care.
My employers were really good during my treatment, I guess it helped that I work from home and was invisible, but I still needed to be available between 8 and 5 for them to call me (Australian company). Are you able to do any work from home on your less than sparkly days?
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Glad to see you're well enough for work, Amber
Hopefully it won't happen again (low neutrophils that is). I'm lucky in that I work part time & my bosses are reasonably flexible. I hope yours are too...Hope Thursday's study appt goes well Donna looking forward to hearing about it. Had to laugh about forcing the red wine down, the things you have to do! (I prefer white too)
I'm flat out on the couch.... Worked Monday, went to Ak yesterday, then again today for chemo....housework tomorrow I guess (after a catch up with a friend first- priorities!)
Hope everyone else is good still hot here, but with a bit of an autumnal feel - quite nice
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Hi everyone - just checking in again. Weather has been a lot cooler this week down here. Windy too! Hope your week has gone well.
I'm looking forward to some receipes Donna! Hope you used up those eggplants. lol. i might need to try some red wine too. I don't mind Merlot as its smoother but some can be quite hard work
I'm working at an Event for St John tomorrow - NZ Pipe Band champs in Feilding of all places. Oh well - good job I don't mind the sound of the bagpipes.
Good to see you surfacing again Amber. I do think the first chemo is the worst as its such a shock for the system. Hopefully next time is better. You just need to tackle each time as it happens as its never the same so you never know what to expect.
I remember you going through your bad time of it Nikki. But you made it through. It's just weathering the storm and hanging out for that rainbow to shine again at the end.
Hope your catch up with your friend was good kt and you are feeling a bit better.
How's everyone else doing? Looking forward to the weekend I bet. Tonight is the first night Tim and I will be alone in our new house (no kids!) lol. They all at sleepovers, parties, friends etc. looking forward to that.
Have a nice weekend everyone x
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It's been quiet on here lately.
KT I hope you've had your CT results by now, and that today's chemo was ok.
Hi to everyone else, hopefully you're enjoying the start of autumn.
It's a really nice temperature now, I was so over the humidity we had a couple of weeks ago. I took my "pool" down yesterday. I reminded me of our Christmas tree ...... everyone totally into the putting up, but zero interest in the taking down.
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Hi
It is quiet here!
I had my assessment on Monday, saw Sheridan, and she said CT shows stable
But tumour markers continue to rise so she says it's likely I will have to change treatments soon. I'll talk it over with my regular onc when I see him....Worked yesterday & chemo today, so very tired at the mo. Also picked up my dd from her flat as she is unwell. Ds has been sick for over 2 weeks so I'm hoping they get better soon & I don't get it as well!
Autumn is def here- I love it, apart from the reminder that winter is not too far away. I'm not a fan of getting up in the dark (& cold) and early darkness in the evenings. (Smiled about the pool- typical)
Hope you enjoyed your weekend (or night) alone with Tim, Kruise.
Catch you all later
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Hi guys, yes it has been very quiet. Feel bad I haven't been in to post about my Mediterranean Diet. It's not going very well. I had pizza on Friday at the pub but technically that is Mediterranean. Then on Saturday night I went to a famliy BBQ and had pavlova, chocolate log and trifle - what's the bet everyone else on the trial will take weight off but I will put it on?
The red wine thing is going okay though hahaha!. I had my 2 year follow up appointment with my Surgeon on Tuesday at the Super Clinic and he said I am doing well and he only needs to see me annually now so that is a good thing. I think I have something going on with my uterus though and hope the Tamoxifen is not doing any damage. I will have to find out at my next Oncology appointment I guess. One thing I did learn at the meeting for the Mediterranean Diet group is most of us are on Tamoxifen and most of us (if not all) have had weight gain and lots of aches and pain. I laughed about the pool thing too Nicki, typical. Both my kids came home from camping recently and the little buggers just chucked their tents in the car without folding them up, I mean to say - what's with that??? Take care everyone, Donna xxx0 -
isn't the weather glorious guys. This is my favourite time of the year where it's usually pretty settled during the day and cooler at night which helps with my sleeping. I went to Waihi Beach with some girlfriends on the weekend and we had a fabulous time. I'm off to Tauranga this weekend for a party. It seems everything happens at once.
The new oral chemo is going ok. It's still a bit early to say whether it will be better or not than the IV version. The worst part is that you can't eat for 8 hours before and 4 hours after taking the chemo. I'm usually famished by the time I get to eat. I guess I will get used to it over time.
KT I hope your kids are getting better and not passing their bugs on to you.
Niki your pool situation sounds just what would happen at our house.
Fizz your Mediterranean diet sounds like fun. I love chocolate log. As there is currently only my daughter and I at home both pretty busy we have decided to get in Ladia Lims food bag to help us get sorted for meals. We are getting the vegetarian bag even though neither of us are. We just thought it would ensure we get 4 really healthy meals and we can have meat on the other nights if we wish. This is our 2nd week and so far so good. The meals have been beautiful and fresh and easy to put together. There is always enough for at least 1 of us to get a lunch the next day. Caitlin is home from uni before I get home from work and she usually has everything under control. I said I'd tackle the tofu tonight. That's not something either of us have cooked with.
Hope everyone is out enjoying the sunshine it will be winter before we know it
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Hi Shazza, you know one of the most astounding things I found out about this Mediterranean Diet I am doing is I am only allowed red meat one a month, yes that's right only once per month!!! Apparently they mainly eat fish and chicken. Just thought I would mention that as I was very surprised. Have a nice time in Tauranga
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wow fizz. I knew they recommended reducing red meat intake I didn't realise it was only once a month. How often are you allowed chicken & fish?
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Just popping by to say hi. Feel guilty about being MIA. I have had family return from overseas and had to provide a great deal of Granny day care while they got sorted. Them have friend here from UK. She is probably my best friend. We have had some time away with her and Will miss her when she goes home today.
Had good report from Breast surgeon and we are hoping for big celebrations next year when it will be ten years (not without hiccups) but we are getting there.
Big hugs to all.
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I guys, welcome back Alyson. I was wondering how you are. That's fabulous news that it's nearly your ten year anniversary
Shazza, yes I know I was quite shocked too that I am only allowed red meat once a month, I was sure they ate lamb but just shows you. I am allowed as much fish and chicken as I want as far as I understand. I'm really lucky that my 21 year old son is obsessed with fishing at the moment so I have a freezer full of snapper and smoked fish (yes I know I am very spoilt). I am also eating tinned sardines in olive oil and tuna. It suits me fine because I'm not a big read meat eater anyway. Take care everyone. Shazza your daughter sounds lovely, just like mine, aren't we so very lucky xxx0 -
Hi Alyson, good to see you.
Donna, you've inspired me to have fish for dinner (had to buy
no fishers in our family). Shazza, you're so lucky to have Caitlin! I need a chef here too, or just someone who can throw something together instead of me every night
I can't complain tho, cos I'm not working as much as you.... I don't know how you do it. I was saying to my onc how tired I was & she said it's no wonder becos I've had truckloads of chemo- but you've had way more than me!Have a good day everyone
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Hi Girls
I haven't been here for so long. I posted this in the 'worried' board but got no love there so thought I'd see if anyone over here had anything to help cheer me up?
I have had rib pain since just after my lumpectomy in 2012. It was much worse and very sore after my mastectomy in early 2013 and then eased back. It has been constant but not intense ever since. Now however, I am 13 weeks pregnant and here it is again. I have looked up chostochondritis in pregnancy and it is very common.
Here are the reasons I'm trying to convince myself it isn't cancer
- I had high wbc during a urine test last week (bone mets reduces wbc)
- I've had pain for 3.5 years and it hasn't gotten worse except when the area is aggravated (mastectomy and pregnancy)
- The pain is directly below where the pec muscle was cut from the rib/cartilage and reattached (maybe the next rib down but//)
- Chosto is common in pregnancy
- I am carrying a lot of extra 'weight' around my middle right now (pressure on the ribcage)
-I'm pretty sure that the pain is coming from the cartilage and not the bone (I have bruised the other side trying to poke around for symmetrical feelings!)
I'm hoping i can move past the anxiety (can't take my usual anxiety meds during pregnancy) and put this out of my mind for the next six months so I can enjoy my pregnancy. I am not prepared to cope with the whole testing regime. Can anyone help me off the ledge?
Thanks for your support
Holly xx
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Holly,
Such pain is very common after BC ops and it seems that in some people it goes on for years. It is often actually nerve pain. Post bc pain is very common. I have extreme pain in the rib area and in my shoulder which my BS says is from the operation. Have you talked to you doctor about it just to put your mind at ease so you can enjoy the next few months. Sending you big big hugs.
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Hey Holly.
Congratulations on your pregnancy! Now, get in off the ledge. I have an ongoing similar issue on my mastectomy side. I have spoken with the Lymphedema nurse about it and she said that pain was very common even years after surgery and radiation, something about the connective tissue being damaged by all the raking and cutting. It can wax and wane. My Oncologist didn't seem concerned either. I had breast surgery (fibroadenoma) when I was younger (19 years old), on my mastectomy side and it still hurt to prod years afterwards.
I hope I have helped. Nikki
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Hi Alyson and Nikki
Thank you both! Yes I know it's so common and it is sooooo good to be reminded of that!
I just have to remind myself of that, and the other points above which I have already listed on the non cancer argument, when I'm planning my funeral in the middle of the night!
xxx
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Night time is the worst isn't it? I do the same, think the worst at night, but the next day everything seems brighter & it's really ok!
Congrats on the pregnancy
It'll be wonderful to have a new wee baby! I just had lunch with some girlfriends and one brought her 2week old granddaughter along (her first) she was so gorgeous & slept right thru lunch!Hope you are well & truly off the ledge now & enjoying your pregnancy x
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https://www.fmhs.auckland.ac.nz/en/faculty/about/n...
I thought this looked interesting - I am considering going.
Happy Easter everyone
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Hi everyone. Nicki I could be interested too? I am so looking forward to having 4 days off. Rest, relaxation and chocolate - bugger the diet, do they even eat chocolate easter eggs in the Mediterrean? Happy Easter everyone, Donna xxx
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I just had an early choccy egg. Mum.
Conference sounds interesting. Might think about it....
Enjoy the long weekend
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Ha, so you know that shed that took ages to put up. The storm flattened it and it's a pile of rubbish now!
Hope you are all enjoying the long weekend. At least the weather is looking better now.
I'm off to drs soon as I have a pusy toenail (thanks taxol) and need antibiotics
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KT for all that effort the shed didn't last long. I remember when I had yucky taxol toes Rueben recommended I go to a podiatrist. I only had to see her once but she got everything under control. She suggested tea tree oil which I continued to use. I've had no toe trouble for ages but wonder if it will rear its head again now I'm on a much higher dose with the oral.
I'm off on Monday for my final three day stay for the trial. After that I'll be solely under the hospital and a lot of the current rules and restrictions will come off.
Well the weather has finally picked up again. Hope everyone is getting to enjoy the sunshine. Have a great Easter
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Hi everyone, I thought I should introduce myself because I've been on this website since last year. I live in Central Auckland and have had two bouts with ILC as you can see from my profile. I had regular annual mammograms and ultrasounds every year at a private clinic (not cheap though luckily we had medical insurance which pays half) and everything was fine but in fact it wasn't fine because I was growing a 4cm ILC tumour the whole time! What none of the doctors there told me was that lobular BC often doesn't show up on mammograms and I should have been getting MRIs as well. After my first diagnosis when I was 40, I sort of buried my head in the sand a bit and didn't really read much about BC because I kept getting told I was fine. Anyway you probably know what I'm talking about.
So here I am now on letrozole with loads of side effects. The nodes had isolated tumour cells but my MO didn't recommend chemo after my Oncotype DX score of 22. My mum kindly paid for this ($5000). She's had BC twice too, once DCIS and once IDC, lumpectomies both times. I'm going to have genetic testing later this year. I'm married with two sons aged 21 and 18, both students at home. Next month I'm supposed to see my BS and tell her whether I want prophylactic mastectomy, reconstruction or 6 month mammo/US/MRI which of course is stressful. This decision has been extremely hard but I'm leaning towards mastectomy with no reconstruction, mainly because I've been amazed at how difficult and prolonged the procedures are after reading posts on this website.
Anyway, just wanted to say hi and also that I'm in awe of what you ladies have been through over many years. Hope you're all having a great Easter weekend, Michelle.
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Hi Shazza, thanks, I'm hoping the ab's will do the trick- I'll use tea tree oil too & hopefully avoid a podiatrist.
Hope your Easter is going well too. Wow, another 3 day stay! Then do you just see the regular oncs & registrars etc?
Hi Michelle. Sorry you find yourself here. I had ILC too (& a bit of IDC mixed in)- good you've been proactive & kept on top of it. I started off with one mastectomy then got tired of being lop-sided (& worrying about ILC not showing on scans) and got the other breast off. I haven't had reconstruction and I'm very happy with the freedom of not wearing bras & fake boobs!
I have a daughter age 20 & a son who's 18. They are a good reason to keep on keeping on
I hope your appt with your BS goes well & you reach a decision you are happy with.
kt
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Hi everyone!
Happy Easter. It's so nice to have a longish break from the routine. Sorry about the shed KT, it was pretty wild with the wind here. How's the house business going?
Shazza good to hear that you'll be getting into the less restrictive end of the trial, does that mean that you can eat earlier? It will be nice for you not to have to go and get in infusions.
We're getting my son ready for the Carmel College ball next week, his girlfriend goes there. I though girl balls where stressful, but turns out boys are just as bad. He's got the Pakuranga College ball in May so we get to do it twice. Yay!
Michelle, nice to meet you. I have 2 kids, 19 (girl) and 17 (boy). I had a prophylactic mastectomy last August after having a mastectomy the previous year for a 13cm (!) "mammagraphically occult" ILC tumor. Like KT I hated being lopsided and haven't regretted my decision to get the other one removed for one second. I generally don't wear prosthesis, because I find them hot, heavy and uncomfortable - and I don't love the fit of my mastectomy bra's. A friend knitted me several pairs of cotton boobs which I adore. I stuff them into a normal wireless bra if I feel that I need to wear anything. I wish you well with your decision.
I am off to see Rosalie on Tuesday.
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Hi everyone. Hi Michelle nice to meet you but I'm sorry about the circumstances. Another ILC lady huh, maybe it's not as uncommon as we are told. Hey Nicki I have been scheduled an appointment at the Botany Superclinic today at 10:50 because of my bleeding and tummy pain, funny if we bumped in to each other. I thought I would be seeing Rita or one of her side kicks but maybe I will be seeing Rosalie. I am so worried they will take me off Tamoxifen, I hate being on it but am more worried about not being on it - if you know what I mean? It seems so unfair that we have all these horrible side effects but they won't do anything proactive (like give me a hysterectomy) to stop them. Anyway sorry for the rant. My Mediterranean diet isn't going fantastically well either, I was really good and didn't eat any easter eggs which is not like me but I did chow down on some mini mallow puffs and mini toffee pops. Have been kind of sticking to it though (except for the red wine) I'm finding that pretty hard going. Anyway take care everyone. I have the beach hop next weekend and it's my first time, very excited. Donna xxx
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I hope your appts go well today Nikki & Donna. I know what you mean about the tamoxifen Donna. I hope you get some good answers.
Hope everyone enjoyed Easter
It was nice having the family together for a few days. I better go ring oncology - I've decided to pike out of chemo tomorrow (& zometa inf) because I'm too tired & my toenails are not the best & apparently it may not be working anyway so what's the point!
I will hopefully see Reuben next Monday & discuss the plan of action....
Have a great day all
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I am seeing Rosalie at 11.30, so I might well see you on your way out since I am always early. I'll try anyway. How do you get an appointment to see them earlier than your usual 6 months? GP referral? I am thinking about changing my GP as she was fantastic until I went in the too hard basket. I think that she thinks I am mental ....... which I am, but that's a closely guarded secret.
Sorry you are so tired KT. Those toenails sound very painful. Did the antibiotics help at all?
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Hi Nicki, don't worry they think I am mental too and they are probably right. I phoned the Breast Cancer Nurse at Auckland Oncology and told her I was bleeding blah blah blah and she got me an emergency appointment. What I wanted was a referral to a Gyne, that's why I'm worried they will tell me I'm a hypochondriac and I need my head read, not my uterus hahaha! Gosh there are no secrets on here are there. I might see you on the way out. Take care everyone. PS they told me I should go to my doctor but I had an argument with her and said why should I have to $50.00 when it was them that put me on the Tamoxifen which is affecting my uterus. I'm sorry but I'm not nice anymore and have learned the hard way you have to be pushy!!! I'm sure they see me coming and all sigh!
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Hi everyone, thanks for your kind replies. Donna, I was on Tamoxifen for two years after my first BC, and found it extremely difficult. I went from having 'normal' periods to 'periods from hell' as I used to think of them. I developed a large fibroid and polyps which had to be removed, and became dizzy and light-headed every day, probably from anaemia. I also developed heart palpitations which were quite scary. I stopped taking it and my doctor didn't seem too concerned. It's different now, I couldn't just stop taking letrozole without switching to another one as my diagnosis is a lot worse than the first one. My ILC is pleomorphic, does anyone else have that? I only have a vague sense of what that is, but I know it isn't good. It's interesting so many of us are ILC. My MO is Karen Amies at Canopy Cancer Care. She told me that my type of ILC is extremely rare and there just isn't enough research on it. I find all the ILC threads on this site so interesting.
I chuckled at your comment Nicki about your GP thinking you're mental, my BS always writes in her letters: "Michelle is an intelligent woman . . .". I have come to realise it's a code word for "she asks annoying questions". These letters are copied to all the other doctors etc. and I used to be flattered by it but now really do think she's warning them!
Hope you all had a great Easter.
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