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Topic: Kiwi ladies who need encouragment, but all welcome.

Forum: Australians and New Zealanders Affected by Breast Cancer —

Australian health care, clinical trials, and life in general in the land down under.

Posted on: May 28, 2012 01:10AM - edited May 28, 2012 01:12AM by midnight1327

midnight1327 wrote:

I did start a thread for kiwi ladies, and another lady suggested we start one  in the community support. this is just  an encouraging and support thread for any kiwi and anybody who needs support, and bring kiwi women together, so  do feel free to join in.

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 17, 2012 08:36PM Musical wrote:

kt, for reco, I just went NOPE. Id heard soooo many horror stories it made me shudder. Even if I did want that route Id still have to consider that since chemo my veins have become extremely problematic. Both arms are out of bounds becasue of lymphoedema so its all now done from the foot. I can unequivocally state this is NOT fun, and can have its own set of risks. Obviously, then, the more needles I can avoid the better off my life will be. Others may be in a better position than I to accept these things, but Im sure glad to have avoided more and more and more surgery. PASS! 

Indeed there is no simple answer and its very much an individual womans choice. As I said, it needs a lot of thinking through and weighing up the pros and cons for what suits you.

Hils, ha, somewhere on this site ages ago I saw that it was still recommended to have mammos after mast!!! OUCH! Yell no thanks.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 17, 2012 09:46PM midnight1327 wrote:

Well i hope everybody had a good weekend, you enjoy your time with your DH,

My sister caregives a lady who is on arimadex and she don't like it and sister says, she thinks half the time she does not take it.  She is supposed to be going for another breast masectomy and reconstruction, but BS wants her to loose 10kgs before it happens as the reconstruction takes better if you on the slimmer side,  oh well, i thought with cancer weight would not be an issue, , but she has asthma and they could not do bmx as it would be too much for her. But she hates arimadex. I am on tamoxifen, i make sure i try and take it as its really going to help in the long run, i have missed about three times and thats  because i have forgotten or gone to sleep as i take them last thing, and don;t like to take it if i can't remember if i have or not incase of overdose, i just take next dose the next night. My poor old Body is still feeling the effects of those sheep. I think i go take some panadol. have a good day.

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 17, 2012 10:29PM kt1966 wrote:

I hear you re recon Musical...I don't want to take that risk either. I am 8 1/2 years out from my MX and have only had a brush with lymphoedema recently (Dec last year) when I did a bit of heavy lifting & my arm ached & ached & had pins & needles. I had MLD & wore my sleeve, but it took a month to resolve- what a pain- & I only had mild swelling.

I made the mistake of flying to Aus without my sleeve (I flew to Europe 7 years ago with no problems) and my arm started aching again- so while over there I bought a sports compression top (skins) with long sleeves which really helped- I tend to feel it in my back behind my breast too...so that should help with the truncal lympho as well.

It must be a pain having it in both arms. I got quite blase about it all before Dec, had BP & bloods taken from my MX side- never again I tell you!

Hope you feel better soon midnight Wink The things we do! 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 18, 2012 12:51AM Hils wrote:

Hope you are feeling less sore as the day progresses Midnight

I really can understand why everyone thinks real hard about recon, at one stage I was not going to bother then changed my mind at the last minute. On the forum out of the 30 of us that had a MX or BMX with recon, 4 -6 of the girls have had real problems with infection, cellulitis, LE, cording and poor surgery results. So it is not an easy trip and although I have been very lucky it is a long journey and quite sore at times. But it really is an idividuals choice as to whether to recon or not, there is certainly no right or wrong answer.

Hi Musical I think the mammo for MX and recon side is not quite correct. Because the only skin that the cancer could grow on is above the recon and can be examined easily either by yourself or a Dr. The mammo will not show any cancer that is growing elsewhere behind the implant. I think the only time you would have a mammo would be on a recon side that is still mostly your own breast and has been slightly shaped or added to with a small prosthesis.

Hils SNB and Partial MX 16th Dec 2011; UMX 6th Mar 2012 found <1cm IDC as well as the DCIS Dx 11/26/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 2/16/2012, IDC, <1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jun 18, 2012 03:32AM midnight1327 wrote:

starting to come right, another good sleep and should be back to  normal, i did such a big yawn today, my whols jaw clunked, ow and my ears popped lol, anyone ever done that.  but yea am coming right, hope everybody sleeps well tonight, cheers

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 18, 2012 06:34AM Musical wrote:

Hi Hils, I meant Mamms after Mast, with no recon.  Yes, there was mention of this somewhere but to find it would be like looking for a needle in a haystack.

kt, congrats on being over 8yrs out! Over at the lymphoedema forum, there are some ladies on there that really know their stuff.  They would tell you that no way should you let them take BP on your Mast side, I think even for no lymph node removal. Some threads I found to be extremely helpful. The fact they try to get across is that once youve had lymph nodes out you are at risk for the rest of your life. No scratches stings needles etc. or too much heat.  Indeed they mention about flying. Once it flares up it can take ages to get under control. It is NO picnic when you have to wrap. What a nightmare! Fortunately mine is not bad and I got onto it early but I do the massage and try to do what Im told to do. It is a real nuisance but it is what it is. Better that than wrapping. I only had that done once and I have NO wish to repeat that process..

Saw my physio today and she said my arms up a bit. Just got measured for new sleeves. My left (Prophy) side has had such a hiding from chemo and other stuff like BP and blood tests that it finally said ENOUGH! That said, on my prophy side the diagnosis is 'suspected lymphoedema' because without specific tests they said  they dont really  know but they reckon it is.

 midnite, big hugs to the lady your sis caregives. Arimidex is NO picnic and neither is Tamox.  I didnt do too bad on Tamox and the last couple of days I think Ive been a little bit better with the Arim. I'm hoping the SideFX will taper off. I know what you mean by forgetting in case you overdose. Sometimes I wonder just how much these drugs really do affect our short term memory. I know many woman have mentioned this. I find it quite alarming when I just dont know whether Ive taken it or not.Fortunately Arim has got the week days on the card of pills but  for Tamox my wonderful hubby would write it on.

Coming off a farm myself, Ive done lots of rounding up sheep and stuff. They can sure be block heads at times. We have a grand population of 4 hoggets at the moment. I find with sheep, you get really good results if you dont rush them and to corner them gently. Positions of gates and suchlike can be the difference between recurring  frustrating disasters to a one off easy peasy procedure.  Have you ever tried mustering ewes and lambs on a windy day? Ha ha Oh what 'fun' that is. 

Have a good evening ladies

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 18, 2012 08:31PM midnight1327 wrote:

Lol Misical, i guess we have, it gets pretty windy down  in the Manawatu, but yes you are right, hubby always signals me to stand back and let them settle til next move and watch their heads and man it only takes one stuborn one to upset the rest and then you are running for your life across the flaming paddock   AGAIN < LOL>. yes i have really noticed my memory is bad, sometimes i stand still for a moment to try and think of what  iwas going to do next, things enter and leave my head very quickly nowadays. I am almost tempted to get my pills into a medipak. so i can actually remember when i have taken them, as i am on iron and these statin pills for colestreol and my normal thyroid which can't take at same time as iron as it zaps the thyroid. and then my tamox at night., then sometimes i get very tired and wake up, oh shoot, have not taken my tamox or have I???. i think i will take that option with the medipack.

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 18, 2012 09:34PM Musical wrote:

Ha ha one stubborn one oh yes, and you can guaruntee each mob will have at least one. The type/breed can very much play a part too. Like, you wouldnt want to race around after a Borderliester (spelling?) Man they go like the clappers those things. Skittery as too. Wild as when you shear them. In my younger days I used to shear a bit and did my own ones. Romneys can be nice and quiet but they can also be as thick as 2 planks. Its actually quite amazing how quiet they get when they get used to you though. Our latest 4 were bought  'wild' and they are considerably quieter just by us over time passing through the paddock doing whatever.

Theres nothing worse than a gate mid fence line, ie, not in corner or at least near thereto.  Our neighbour has one like this and over the years Ive seen him have NO end of dramas aplenty trying to get stock through it.

Another thing Ive found for the most part, its as much use as an ashtray on a motorbike to try and round up sheep once theyve split up. You might as well spit into the wind.  When they do this I just let them regroup and start from square one again. In one of our little paddocks they love to play 'ring around the rosey' around a couple of trees, if you give them half a chance.... grrrrrrr. That can get VERY old VERY quick. LOL! I can laugh now but at the time it aint so funny.

Those med packs are a good idea for those people who have consistent daily meds. Arim is my only one and so its not so bad for me in that way, but what annoys me is I can take the jolly thing then not 5 minutes later I can still be at a loss as to whether Ive taken the darned thing.

If anyone else here is taking Arim at the moment, how do you find the 'intelligent' way theyve dated the card of 15 tabs? I reckon its silly or am I missing something?. Theyve got both rows with the arrows pointing the same way instead of in a logical circular fashion. (DUH) then one tablet on its own saying 'take this last' with no day on it. (DUH again)  The other day Id finished on a Sunday but couldnt remember whether I started on a Sunday as well as the 2 Sunday pills were gone. As such I thought Id overdosed. Rant over.

 Have a good day ladies.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 18, 2012 10:22PM kt1966 wrote:

Hi girls. We had a nice patch of sun after the rain so I've been out picking up horse poop. Fun.

I know what you mean about the sheep. We've got a couple of arapawa sheep at the mo & they're ok. Pretty quiet once they're in the pen. We had wiltshire before & they were mental, one went thru the top two wires of the fence instead of following the others thru the gate & got stuck hanging by a leg- I had to run & get the fencing pliers to release it! Tiny brains I reckon.

As for taking pills, I'm on letrozole now & somehow remember to take it. Before I was on tamoxifen & used to have to write on the card what date I started it & count how many days I was up to nearly every time!

Musical, typical me, I remember I should have worn my sleeve or at least my compression top for the poo pick up when I'm nearly done & feeling tired - I'm my own worst enemy.

As for being 8 1/2 years out- yes, its great, but the worry never quite goes away I've found. I had a scare last year with tumour marker going up (to 385, normal under 40) and vague symptoms- lots of scans later & NED, but changed onto zoladex & letrozole just in case. I found BCO in the midst of that & find myself here a lot. Which probably doesn't help me forget & move on! LOL...

Guess I should go & do some more work, now I've had a cuppa & a break... 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 18, 2012 11:47PM Musical wrote:

Hi kt, Yeah some sheep can be right knuckleheads alright, but their temperaments and such can be so different too. We had a real oddball  'pet', which we got after being weaned and we subsequently tried to get tame.   SHe was very unusual and somewhere along the line she must of come from wild stock somewhere. She was black with 2 white socks at the back, and a round white topnotch. CLean face and legs,  very wrinkly skin and wool very very fine. Real hard to shear because somewhere in the mix was a BIG dash of merino. In the end she got quite friendly but only to us. I figured she REALLY had more brains than any other sheep I came across. Just little things she did totalled up to quite a smart animal.

Re the tamox, yep that was me too and I was looking forward to that changing on Arimidex.  Apparently NOT.  Dang. 2 1/2 yrs to go of being a numb skull. Great. Oh gosh these sleeves can be a pain. I get SO sick of it but I remind myself the alternative could be worse. I dont even want to go there so you end up just boxing on, kicking yourself when you slacken off then pay for it.

Im with you on "never quite goes away" bit. I think we all tend to never quite stop looking over our shoulders. 

Well kt its nice to see other NZ ladies here, but of course not the reason though! What do you mean (excuse my ignorance please) by tumor markers going up, and what do those figures stand for? Its a phrase I hear on this board a lot and thought it was a 'US" thing. Obviously not. Is it to do with the BC type?

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 19, 2012 12:44AM kt1966 wrote:

Musical, I had never heard of tumour markers either until my GP told me mine were a little high (55 at the time). She was doing the Ca15-3 6 monthly.

She contacted the onc who said it was to be expected for my diagnosis, and not to do them. When I started feeling a little off, they were retested and they kept going up over 3 months or so- hence the scans & new regime. But now the latest test shows they are coming down- so now its back to not testing the marker again.

My onc doesn't do tumour markers generally, says they are too unreliable for some people & that theres no advantage knowing anythings going on till you're symptomatic. I don't know if I agree- I still find myself wondering where they're at! Need to let it go and trust that these new drugs are kicking any remaining BC cells butt.

The marker is a protein produced by the cancer cells , I think. But it can go up for other things like inflammation & benign disease (just usually not so high I think). 

Its cold again here the sun has disappeared & its showery. Need to go & feed beasties soon. Then time to snuggle inside & feed the two-legged beasties (kids!) 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 19, 2012 01:58AM Alyson wrote:

Evening all

I have real admiration for you ladies on farms - I don't know how you manage especially having had BC. 

My onc does tumour markers but that is because I have been on a trial for femara. Anyway mine have never been raised, evidently this is not unusual as they are not always a good indicator of thr presence of cancer. My calcium levels go up when I have an arthritic flare. It can be difficult following the tests some of the US folks have - according to my onc far to many and don't think that we are behind with treatment regimes. Our treatments are very similar to UK, Aus and Canada.

Femara - letrozole is an AI and does have SEs. Will be interesting when I finish soon. My rheumatoid arthritis and fibrmyelgia have been really bad at times, I often don't sleep and I think I still have chemo brain but I am nnever sure if it is the femara or just me and my other health issues. (I had polio as a child but thats another story).

Kt I belong to the 'swell sisters' as well. At times I will wear my sleeve all the time then other days I just don't want to but then usually I pay especially if I am doing something active. Have quite severe truncial lymphoedema which is more of a bother.

Must get something for us to eat tonight.

Hugs

Here we go again. Dx 12/19/2006, IDC, 3cm, Stage IIIC, Grade 2, 23/24 nodes, ER+/PR+, HER2- Surgery 1/19/2007 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/23/2007 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Hormonal Therapy 8/10/2007 Femara (letrozole) Radiation Therapy 8/10/2007
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Jun 19, 2012 03:39AM Hils wrote:

Cheers Musical for the clarrification you had me worried - really would not fancy having my recon squished

I always thought sheep looked quite chilled, but having read your posts Kt, Midnight and Musical I realize that was a very naive 'city' view. Have to say your stories make me laugh

Interesting discussion also re lymphodema and blood tests. I learn so much from you guys, thanks for sharing.

Hope you are all having a good week inbetween the downfalls

Hils SNB and Partial MX 16th Dec 2011; UMX 6th Mar 2012 found <1cm IDC as well as the DCIS Dx 11/26/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 2/16/2012, IDC, <1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jun 19, 2012 07:17PM kt1966 wrote:

Hi girls. Sorry to hear you have lymphoedema too Alyson. I hate wearing my sleeve or anything so I can't imagine having to do so all the time. Do you have to wear yours a lot too Musical? I seem to flare up if I've been doing heavy work or flying now. So I wear mine the bare minimum & try & do exercises to help with drainage if it does flare up.

Its so expensive to have MLD done! So need to keep on top of it- luckily my swelling has been minimal- but I hate when I can't get comfortable at night because my arm is sore...I should probably wear my sleeve more often.

Hils, we live on a 'lifestyle block' (or life sentence) so not quite a farm but we get the fun of the animals.

Well the sun is out- but I hear we have a possibilty of thunderstorms later so must go & do the outside stuff before that happens. My son has a hockey game this evening- hopefully it will be cancelled if the storms arrive! 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 19, 2012 07:46PM Musical wrote:

Hi Alyson, our 'farm' is very rural but just a wee 1 acre!  so theres not a lot to it. We used to have a couple of ewes which we got in lamb each year. Those generally went into the pot. You definitely didnt want to get too fond of them. Very hard.  Cry  Recently we just buy and fatten weaners for the pot. We utilize as much space as possible and each year can be so different with growth and such. When the tucker runs out you just put em in the freezer and that way its doable. The difference between home grown and supermarket/freezing works meat is night and day! Moreover, you never quite forget what homekill is like once youve been brought up on it....which reminds me... meat glue anybody???  Yukkkkk

So sorry to hear you have truncal Lymphoedema. That must be so awful. I'm also sorry to hear you have polio. My brother had it and polio is a shocker. ALL his life he has had to suffer because of it. I know some cases are waaay worse than others.

 THanks kt for explaining that. So what exactly do they do to test these markers? would it just be blood tests?  Indeed my med team including GenGP said US BC people are 'over diagnosed' 'over monitored' etc. I dont know either, I think I prefer to know, but also theres a balance to be had between trying to put it behind you and staying vigilant. I would NEVER want to malign anyone who is on the vigilant side, as sometimes the medical fraternity can subtley do. Anyway, who's got the right to minimize your life? BC is a shocking disease and the fact of the matter is we do look over our shoulder at times. 

 Hils, if I can make someone smile then that makes me feel happy. Sheep can be really dense alright but they can give you a lot of laughs. Especially if you just have a few. They can actually have their own unique temperaments and you'd never know unless you sorta watch them for a while. They also have a pecking order and thanyou very much, woe betide anyone who steps outta line LOL. Goats are not only intelligent but  naughty naughty naughty lol!. Man did we get some laughs out of our one. She lived to 14years old.

Cows are neat animals. Trust me, thay can be VERY funny at times too. Couple of years ago my neighbour had about 8 cows, some calved and others ready to. This day they decide they didnt want to be rounded up by any dog thankyou very much and so suddenly bolted into a full gallop in all directions, tails high, udders flying, one with its head down ready to have a go at the dog (yes at a full gallop) . Some were heading for the open gate out onto the road and others going in the other direction.The whole thing made me laugh so much I just about wet myself! The farmer wasnt impressed at the time but he mustve laughed afterwards surely!

Have a good day ladies

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 19, 2012 08:05PM Musical wrote:

Hi kt just saw your last post, after I posted mine.

Yes I do have to wear mine pretty much most of the day now. I also wear a fingerless gauntlet on the mast. side. To start with I only wore sleeves in the a.m or if I was doing something physical like gardeneing.  Sometimes they can get uncomfortable and I just get em off  because you can swell up or be a bit larger for whatever reason, and the darned things then feel too tight. Mostly I do find they help though.  Obviously summer is worse becasue you still have to wear them.

One thing Ive learnt is if you do things preventatively you can save yourself a LOT of dramas later. I know I know its a pain up the butt but as I said, that lymphoedema forum I found was really helpful, because you really DONT want this thing to get nasty on you, and those girls gave me good solid info to want to stay on top of this. Yes its a flippin syndrome, its a life sentence, but we just cant change that. It is what it is. I get sooo brassed off with having to strip off and do the massage when its a bit cold. I also get sick of washing the sleeves.

One thing I need to ask you. Why are you not funded seeing a physiotherapist or Lymphoedema person?

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 19, 2012 08:32PM kt1966 wrote:

Lunchtime & check on forum time!

Musical- I didn't know you could get funding for lymphodema therapists! Should have asked, I didn't go thru the GP but found one directly. Next time I'm at the drs I will ask about it. The L therapist did MLD and gave me a sheet with exercises which I do when I remember. I know I should be more disciplined but....

I hate wearing a bra in summer let alone a sleeve so I know where you're coming from.

We're on 6 acres & got our sheep & goats to clean up after the horse & alapcas since they're such fussy eaters. The kids like the goats because they are a bit more interactive than the sheep. They are mad, real characters. At first they used to get out from time to time & follow us into the house- but thankfully not for a while.

I'm afraid all our animals are pets, we don't eat them. Our daughter is a vegetarian- so we couldn't go there (hypocritical, but I like my meat to be anonymous!) We do eat the eggs from the chooks- when they are laying, slackers! 

The tumour marker test is just a blood test- which is why I didn't even know it was being done at first. 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 19, 2012 08:44PM Alyson wrote:

Hi all

About LE therapists. Here in Auckland they work out of Greenlane centre and yest its free. The cancer society also have therapists who charge a very minimal amount. With the hospital ones I see them twice a year and they organise new sleeves for me - free, even the coloured Juzo ones!!! And if I have a flare I will go daily then weekly. It is a great service so do inquire, ring the local hospital

Have DGS today and all is quiet, well I hope he is asleep. We have had a busy morning so Granny need a wee rest. He is almost 15 months and a real sweety but then I am biased.

Here we go again. Dx 12/19/2006, IDC, 3cm, Stage IIIC, Grade 2, 23/24 nodes, ER+/PR+, HER2- Surgery 1/19/2007 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/23/2007 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Hormonal Therapy 8/10/2007 Femara (letrozole) Radiation Therapy 8/10/2007
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Jun 19, 2012 08:56PM midnight1327 wrote:

When my mum came and stayed with us once last year, she said, the most animals that fasinated her werr the goats, we have lucy and and amy and they were climbing on things to eat the leaves on the trees and she could not get over how high they got.  but one other time she brought  her friend and Kath is English and a little niaeve about the animal world with farming stock, and we had about 50 rams in the paddock out from their room and Kath stood lol there with her mouth open and said, GOSH THOSE SHEEP HAVE HUGE UDDERS, lol well mum is from a farming back ground just about wet herself, she said, Kath, they are all male sheep, called rams. amd those thigs are not not udders. lol well we all disolved into fits of laughter, it was so funny, poor little kath, she is a little lady too, we call her little kath. but oh dear. she did not have much idea really what was what and we took her to a stock sale and she was quite entertained about how that went, whats norm for us was sheer entertainment for her  and mum knew what to expect, but enjoyed herself too.

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 19, 2012 10:10PM Musical wrote:

Thanks Alyson for chiming in here. Yes indeed kt, look into this, and we'd hope you havent had to buy your sleeves. You should be funded and that would be awful if you were not getting treatment because of this! 

As all ladies will tell you, when this BC things slams into you and turns your life upside down, you barely have it in you to think straight, let alone remember. Im just trying to remember exactly what I did to get onto my Physio/Lymphoedema lady, or what the procedure was. I'm pretty sure the hospital just sorted it out. For my left arm (Prophy) about 12months later, I think the Doctor referred me on, even though I have never been 'discharged' or whatever youd call it, from her treatments. Please keep us posted about this.

Haha midnite, sounded like a real laugh. My hubby just LOVES goats cuz theyre soooo naughty. I forgot to say our little black sheep with the white dome and 2 white boots also had HORNS! Well an excuse for horns anyway. LOL one was shorter than the other, but she sure knew how to use them and she'd do so tantalizing our goat. Usually we had to keep the goat on the chain coz she was such a stirrer and would get into the sheep. Too bossy. As for climbing on things, ha, that would be an understatement me thinx.  At the time when goats were a viable farming option., the neighbour had them in the woolshed over night only to find them IN THE RAFTERS and everywhere else they shouldnt be the next morning. Hehe they wernt in the pens thats for sure. :-) ....Now for my UDDER story.... (sorry, now Im being facetious)

We have our own chooks too. There is NOTHING like free range eggs. Once youve had these and/or been brought up on them, you shUDDER at the battery  version. Hubby built them their little house and he reckons theyve paid for themselves as well as paid their mortgage off lol. Yep, we are 'chart people' and when we got our chooks we definitley felt a chart coming on lol. Thing is, chooks and sheep really get on well together. In fact the sheep just moon over the chooks. Weird. We've found this time and time again. We got some hard case photos recently of chooks standing on the sheep while they are lying down. (too lazy to get up I suppose)

I think its neat when little kiddies get to experience farm life. I reckon it does them the world of good and it would be good if all kids were given that opportunity somewhere along the line. Quite often I get 'a poem coming on' with all the antics I see animals get up to lol.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 19, 2012 10:20PM - edited Jun 19, 2012 10:20PM by midnight1327

lol, we have a few chooks, not laying at moment, but man you have poached eggs on toast from free laid eggs, totally different taste, yum yum, i am partial to poached eggs more than any other way or in a egg cup where i can dip my toast lol soldiers.  that is quite facinating  about the chooks and sheep,  wow. how kool. i had poached eggs from shop brought and the yoiks were pale, where the other is a lovely deep yellow,  this morning and they were not a patch on the freee lay  eggs. so do know what you mean.

Dx 8/12/2011, IDC, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 8/30/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/9/2011 Breast Hormonal Therapy 11/22/2011
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Jun 20, 2012 02:56AM Hils wrote:

All of your posts are brilliant especially the ones re the animals. Unfortuantely or luckily for them I do not have any, but that does not mean that I do not love them. Love the story re the rams and the udders, that is classic........... Alpacahs Kt that would be fantastic I have always wanted one, but I believe thye can be quite testy at times and quite fickle. As for goats well ever since I was a kid (not literally) I got knocked over by some wild ones and nearly went over a cliff, so I have always been a little nervous around them - I know that is daft, but obviously there butting left an impression!

Interesting to know about the LE therapists - nice to know just in case.

I have just received my letter re my last recon surgery and the date could be anywhere from one month to six months away. At least it will happen at some stage, just wish I had a date. I am one of those annoying people that feels more in control if I have a date however distant that might be.

Hope the thunder storms stayed away and that your DGS Alyson was good and did not run you wragged. They can be quite a handful at time the little ones.

Hils SNB and Partial MX 16th Dec 2011; UMX 6th Mar 2012 found <1cm IDC as well as the DCIS Dx 11/26/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 2/16/2012, IDC, <1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jun 20, 2012 05:26AM Alyson wrote:

I haven't much to add about animals; would dearly love to have hens but as we live in town that's rather difficult. Do have two crazy cats who are extremely  pampered, well sort off. One is a miniture version of Garfield and goes by the name of Gus - he is small and tubby-and the other is a part Russian Blue who spent much of the day keeping out of reach of Sam who just wanted to hug him. Only saw Gus once until the littlies went home and that was taking off from the back of the house to some secret hideaway. Now both cats are enjoying the fact that we have had a fire on tonight.

We have some really heavy rain but not nearly as heavy as when we were in Wellington after Queens Birthday, driving up to Otaki was almost impossible as the rain was so heavy. Do hope we get some more clear days as there is so much to do in the garden.

Here we go again. Dx 12/19/2006, IDC, 3cm, Stage IIIC, Grade 2, 23/24 nodes, ER+/PR+, HER2- Surgery 1/19/2007 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/23/2007 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Hormonal Therapy 8/10/2007 Femara (letrozole) Radiation Therapy 8/10/2007
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Jun 20, 2012 05:53AM Musical wrote:

Hils it aint daft to be leary of goats. Our one was only a little feral nanny but as wiry as and as strong as. Id never turn my back on a a male (wether) perish the thought of even thinking about a buck. They are extremely strong and can certainly give you a nasty bunt if you dont watch it.

Midnite, our chooks have been laying coming up 16 months, but we sure spoil them. They love silver beet and I grow extra especially for them. They get scraps and I have a special mix made up of crushed barely and maize and wheat as I absolutely WONT give any animals of mine anything with soy in it as I believe its bad bad bad. Finding stuff without soy is no picnic either. Not sure how long they are going to keep laying coz theyre starting to wane a bit now. I love eggs done anyhow, but yeah poached are yum. Hey one day if you have your chooks out freeranging with the sheep, you wanna watch them for a bit. Once they get used to each other you'll see the sheep start mooning.  Ours just stand for ages with their heads hanging down looking into space and the chooks just cruz aound making that contented sound they make. 

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 20, 2012 06:25PM kt1966 wrote:

Hi. Nearly the weekend hooray. I count down the days these days because it means DH is back. The weather was pretty good for hockey last night- no thunderstorm, just a wet drive there & back.

My arm is bugging me today (& the last 2 nights)- I think I will make an appt with the GP & see if its possible to get a referral to Greenlane, don't know if its possible because I'm not in the auckland DHB area. Worth a try maybe? I may need a new sleeve as my current one falls down. Thanks for your help there Alyson and Musical. What do you wear for the truncal lymphoedema? 

Its cold here and I should probably be weeding etc...but I'll use my arm as an excuse (sp? I hate when a word looks weird) and take it easy today.

Hils, the alpacas are pretty gentle & curious. They mainly spit at each other if one of them is getting to pushy re food or something. They look so cuddly but don't really enjoy cuddles- having said that I sneak in a cudddle or stroke them when I'm feeding them pellets...  Sometimes we have wild pigs appear in a neighbouring paddock - we know they're there because the alpacas 'alarm'- they sound like demented pukekos when they do that. 

Our new kitten & our old cat are taking a while to adjust to each other. The kitten would love to be friends but the cat is used to having us & the house to himself, so its small doses of each other until they can cope. Soon I hope- I'm always shutting one somewhere so the other can have a break...(the old one doesnt scratch but growls and gets in a huff)

Hope you find out your date soon Hils, I agree its nice to know when, then you can get your head around it...

Have a good day all Smile 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 20, 2012 08:54PM Musical wrote:

kt, so sorry about your arm. Not good. I get one sleeve and gauntlet free each year, (per arm) and I dont see why it should be any different for you or anyone else in NZ. If you have truncal LE then Im sure it would apply to that garment as well. I dont have LE there so Im not sure about these garments but hopefully someone will chime in and be able to help you. For me though, my Lymphoedema Lady measures me up and I get everything through her that I need. I  know there are places around that stock people with specialized needs like bra's for BC patients, and I wonder if it extends to these types of garments as well, or whether you can only get them through the health system. If they are anywhere for sure there'd be something in Auckland.

Im not sure what the protocol is for each area and dont know exactly where you are situated (you dont have to say if you dont want to), but if there is no Lymphoedema person in your area Im sure you would be referred to somewhere close by your GP.

Oh that will be so nice to see hubby back! Had to laugh about your pussies. Isnt that so typical when you get 2 that havent grown up together ...  its like trying to force 2 magnets together! LOL. Alpacas are SOOOOOOOO gorgeous! Eyes to die for Cool. Isnt it amazing how animals can look haughty and get away with it .... humans try it and its totally obnoxious.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 20, 2012 09:13PM kt1966 wrote:

Hi Musical. When I got my prosthesis & bras years ago the sleeves weren't funded & I had to buy my own, they were around $100 then. (I think I bought for flying to Europe, then only used it for a few hours because I didn't like wearing it). I didn't know there were places to go for lymphodema thru the public health system, but I've only having probs over the last 6 months...

My swelling isn't much- but my arm does ache & tingle/prickle and I certainly don't want to get worse. Do you have to have full-blown swelling to see anyone thru the health system? (I looked and our DHB, Waitakere doesn't have this service, but maybe Ak will let me in?)

The sun has come out so I've been working a bit outside, the problem is I want to get stuck in to the weeding and I know I'll pay the price later!

Hope you are all well- and your sore muscles have recovered midnight! 

Age at Diagnosis: 37 Dx 12/11/2003, ILC, 4cm, Stage IIIA, Grade 2, 4/10 nodes, ER+/PR+, HER2- Surgery 12/15/2003 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 2/24/2004 AC Hormonal Therapy 5/19/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/25/2004 Hormonal Therapy 7/3/2011 Femara (letrozole), Zoladex (goserelin) Surgery 10/7/2013 Prophylactic mastectomy: Left Dx 7/9/2014, ILC, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+ Chemotherapy 7/14/2014 Xeloda (capecitabine) Chemotherapy 6/16/2015 Taxol (paclitaxel) Dx 7/8/2016, Stage IV, metastasized to brain/liver Radiation Therapy 7/18/2016 External: Brain Chemotherapy 8/29/2016 Navelbine (vinorelbine) Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex)
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Jun 20, 2012 09:13PM Musical wrote:

Hi Alyson. Mmmm  your post mustve crossed with mine. Anyway, everyones got neat little stories to tell about their animals, and I bet you get a heap of fun out of yours. LOL, our goat used to come inside, and 'push in' along with the cat to 'hog' the fire, or the general area thereof. In those days it was an open fire. When I first got the goat she almost died because she absolutely REFUSED to suckle. I had to force feed her for a month. All of a sudden she decided she would 'get it' and there was no turning back. She 'progressed' to tea with a tad of milk and suger in a bottle with a teat! LOL and that carried on until she died. We used to 'have her on' at bottle time  making suckling noises and stuff, and she would get bubbles around the mouth line haha. Used to make us laugh.

Im sure if you wanted hens, there are bylaws you could check out? I have a siss in Auckland and they have hens. Theres probably a limit to how many though. 

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jun 20, 2012 09:32PM Hils wrote:

My neighbour has two cats called Pikachoo and Sushi, and Pikachoo is often a visitor for a tickle or a cuddle. Whereas Sushi whos is a fluffy persian is just too posh and will not entertain the idea. Although saying that I was allowed to stroke her a few months ago, but I think she couldn't be bothered to move. They know the house is out of bounds but are often found wandering around our garage. I am amazed they have never got locked in. So I have cats without the responsibility or the vets bills.

I know that because I have only had a few nodes removed via a SNB that I am still at risk of lymphodema, but the risk is a lot lower. Should I worry about having blood taken from that arm etc? How would I know if I had a problem - would it just be swelling of the arm? I have tightness that runs along my tricep that just will not go, but it does not get any worse either. So am just stretching and massaging my arm and I just think that it is just me and nothing else.

Its a beautiful day here in Auckland and it should be a great weekend - lets hope for so.

Hils SNB and Partial MX 16th Dec 2011; UMX 6th Mar 2012 found <1cm IDC as well as the DCIS Dx 11/26/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 2/16/2012, IDC, <1cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Jun 20, 2012 09:47PM Alyson wrote:

Kt because I have a prosthesis - as my 3yr old DGD says, 'Granny has one boob cause the other one is broken' - I have to wear a very good wide sided bra which is very expensive but necessary. They are actually hard to come by. I need the support under my arm where I have what I call my handbag. Some days I can literally cup the area in my hand. The swelling is also in my back, this is as well as my arm which luckily I seem to be keeping under control.. So some days the pain is quite bad especially in the underarm area. I also have a frozen shoulder so do watch out for this, since getting it have discovered up to 60% of women who have full node clearance get shoulder problems, just another thing you aren't warned about.

What area of the country are you in as I know most have Lymphoedema services.

For any Kiwi that might need it have a look at this site www.lymphoedemanz.org.nz/Lymphoedema+Therapists.html#DHBLS. Not sure how to make a hyperlink but just copy it in. They have great info as well but thats the DHB link.

The house is quiet now as both DDs where here and the two little ones who I minded while their mum went to the doc for routine check up.  My sister also had a GPs appointment so went with her niece. My sister lives with us, not an ideal thing but something that we are finding very hard to change. Problem is she has absolutely no other means of support. So at times you will find I will be rather uptight about the situation.

Had better go and tidy up a few things. We are out to dinner tonight, that is DH and I.

DD1 has just arrived and is going again to see her cousin and her little girl.

Hope your day is going well.

Here we go again. Dx 12/19/2006, IDC, 3cm, Stage IIIC, Grade 2, 23/24 nodes, ER+/PR+, HER2- Surgery 1/19/2007 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/23/2007 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Hormonal Therapy 8/10/2007 Femara (letrozole) Radiation Therapy 8/10/2007

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