hiya all you lovley ladies
well its 1250am feeling low and really really p****D off with all this scummy c**p that we all need too put up with, and i just dont seem too get no luck, after all im not asking too win the lottery i just want things too be good again,ive always said and ill stand by this untill my last breath (skint and happy) go lucky anyday!!! .anyway ive been reading and reading and now i ask a question,has anybody heard of or tryed indole-3-carbinol ? well im telling you all now what ever you read it seems a bloody good capsule if any off you have any experience please i would love too know, been down the hospital most off the day and i think i said before but the fluid is around the right lung now the glue did not hold and now its come back needs too have this put in its place before they start chemo god its one bloody vicious circle!!! so i said too maryanne im off home for another trawl through the net and the above capsule came up and it looks dynamite too be honest, anyway enough about us,i hope you are all well and your having better luck than we are but then its got too change soon surely? anyway love and wishes too each and everyone of you.
wayne each day passed is one closer too a cure
Hi all,
I hope you don’t mind me gatecrashing here, I always read what you guys are up to but rarely post here. The title of the thread is deceiving as it always cheers me up to read such positive news. I have a question for anyone who has been on letrazole for a while - I was told that it should work for 1-2 years, what is your experience? I’ve been on it a year and it has worked wonders on my liver mets but with scan results coming up I am of course thinking it may stop working soon.
Wayne, hope you managed to get some sleep and are feeling better - I know it is a cliche but a good nights sleep does help us to feel better, I still remember the irrational steroid fueled lows I had on chemo last year. And I hope things start to improve for your lovely wife soon.
Its another beautiful morning here and I am watching the birds and squirrels in the garden.
Have a good day everyone
Louise
hi all you lovley ladies
first and formost yep had a good night sleep and feel a little better i guess just got too keep with it!!! now louise your right what you say i never thought i would have said it a year or so ago but you are bang on the mark we all take too much for granted and the simple things are the best i.e the views, birds ,sitting by the sea with the fish and chips going on you just cant beat it!!! also im a little worried with your last point about the letrozol femara, as they have just put my maryanne on it just a few weeks ago too help with the secondary bone and they also said it will help with the lung and now you mentioned after 2 years it may not work im thinking about PANIKING too be honest any thoughts? also anybody tryed indol-3-cordinel i think thats how you spell it drrrrr lol, anyway what ever you read about it ,its ment too be dynamite any thoughts?? anyway hope you are all doing well,im going too see my gorgeous maryanne later that cheer me up not sure what she will think when i walk in again lol. love and wishes too each and everyone.
wayne each day passed is one closer too a cure
Hi everyone,
I like Louise always read this thread but haven’t posted on here before. Louise I have been on letrozole for almost a year and CT scan and bloods on Wednesday and will get results on Wed 8th, so don’t know if its working, really hope it is such a scary time as you all know only too well. I have lung mets, I wondered how long it would be effective (If it is working) I thought maybe 2 years but that me guessing will ask my oncologist next week, so will let you know what he says.
Wayne pleased you got some sleep last night, so sorry Maryanne is having a bad time, lets all hope they get rid of the fluid soon and she can start her treatment, I am sorry I have not come across that capsule you mentioned, I know quite a few of them, I am sure someone will know and come up with some advise.
Hope everyone has a good day.
Love Marinax
hiya marina
just need too ask you when you got the lung metz, did you have chemo and were you getting played up with the fluid on the lungs ? sorry for the questions but you are the only person ive heard from really on the lung metz situation its just so sodding scary dont know what too do for the best,i hope you are wellnow and i hope and pray that all your tests are gooooooooooooooooooooooooood, thankyou allfor your time and help myself and maryanne really do aprieciate it, thankyou, anyway love and wishes too each and everyone of you,
wayne everyday passed is one closer too a cure
Hi Lovely Ladies,
Well Dianne is on her cruise leaving us all behind (unless someone managed to get into her suitcase) lets hope she has a great time.
Mary, Hope you had a lovely afternoon with your family, and lots of cuddles with the baby, I hope you are still feeling better. Hope the hip pain has stayed away. May the ‘God sign’ be with you.xx
Wayne, I dont know anything about indole-3-carbinol but had a trawl through the internet, I didnt realise that it was a herbal remadey but I have to say that it has got good right ups, although it doesnt seem to have been tested on humans which might be a bit of a worry.
Hope you had a nice visit with Maryanne after your good nights sleep.Are they going to try to glue the lung again before they start the chemo?? Love to you both.xx
m1yu, You must think me a right dizzy blonde (grey really) but I get it now, you see yours with ‘edit comment’ and I see mine with it. Anyway hope you are having a good day.
Louise, sorry dont know anything about Letrazole but I am sure one of the lovely ladies on this thread will be able to help.x
Its another lovely day in Lincs,just had a lazy one,couldnt even be bothered to cook tea so had egg on toast, love to you all.
Lots of love Roz xxxx
Hi Ladies,
Bon Voyage to Dianne…lucky lady!!!
Roz thank you I had a great time with the family,and the baby was gorgeous!!! I am not in pain,but am feeling knackered,as we have Auntie staying, and we were up to after midnight playing cards!! but it is a ‘nice’ tiredness!!
Anne, hope you are having a lovely time with the family,and hope the sun is shining up there in bonnie Scotland!!!
Wayne sorry Maryanne has to have the glue done again,I haven’t any knowledge of the capsule,but Roz has tracked it down,it’s hard to know how it is going to work, but before Maryanne starts taking anything,check with her medical team,that it won’t interfere with any of the drugs she will be taking!!!
When I was dx five years ago, I was given Letrazole,and it worked for over 3 years, before I had to change to Aromisin,that one didn’t work for me at all, and am now on Tamoxifen, which at the moment seems to be okay, so keeping everything crossed…it’s strange how these drugs work differently on each of us!! Wayne don’t start panicking…there will be alternatives if one drug doesn’t suit!!
M1yu, hope your day at work was good!! By the way when is your next counseling session…must be soon! Hope you are still feeling high!!!
Nicola and Julie thinking of you both and hoping all is well!
Take care everyone, and have a good evening,lots of love Mary xxx
Ps it is nice to see some new names on the thread…welcome!!!
Hi all,
Well, well, I’ve done it!!! Back to work and back home in 1 piece. It was lovely. A few new faces at work and all of them are so lovely and made me feel at home. Of course they’re all happy because I brought lots of cakes and sweets with me 
and they were all gone before I left! Only one down side: my boss was in a meeting and I didn’t managed to speak to him before I left. A few of them were in a hurry to get me back fulltime because there’s lots of work to do… but I didn’t make any promises… I can only do what I can.
Wayne, as Mary said, do check it with medical team so that it won’t interfere. My onc doesn’t give a 2nd thought to things like this, but just worth checking in case. Worth starting a new thread about the tablets, you might just have some others who don’t read this thread notice it, maybe under “Complementary therapies”.
Roz, glad you’ve got it now. Yap, that’s exactly what I mean. And good to know my chemo brain is still making sense.
Mary, good to know you’re having a nice time. Next counselling session is on Mon. Now having had such a boost with the results, not sure I really need it. And when there’s good news, mum don’t worry as much, so not causing too much stress. There’re always things to talk about though, good to know 1st what’s the best way to cope when difficulties arise. Looking back at those shaky periods I had, really glad all my friends - on here or in really life - dragged me across the finishing line. I’d give up long time ago if it wasn’t for all those supports and encouragements I’ve received.
Good to see new names and welcome to you all. Glad you find the thread turning more positive!
Take care & have a nice weekend xx
Hi all
Again a quick comment - I am still on ‘borrowed time’ - by that I mean laptop minutes, not life in general (I hope!)
I’m glad m1yu coped with being back at work, I certainly find it takes my mind off all the BC c**p and will hopefully carry on part time until I physically can’t!
Just needed to comment to Louise re the Letrozole, I didn’t even consider that it had a limited use time, I assumed that I would just keep on taking it while it worked, but I suppose bodies react in different ways and can become immune to things over time, I hadn’t considered this, I was still on a high to find it was working after Tamoxifen and Aromasin quite obviously didn’t. So I too would welcome some posts from ladies who have been taking it successfully for many years :o)…please?
Anyway take care all and I wish all of you (and your families) a lovely pain-free, worry-free weekend,
Nicola xx
Hi girls
M1yu what a lovely post. I totally understand what you mean about support and encouragement helping you along the way to the finishing post and I so pleased that you have found that love and encouragement along your journey. This thread has brought great comfort to me and I’m glad it has to all of us. Isn’t it strange how something negative has brought us all together and we can look back at our posts with inspiration. I’m so glad your visit to work went well but don’t overdo it!!! It must be tempting to get stuck in and they obviously are desperate for you to do so but remember – you are number one here and your needs come first! Take it easy and enjoy feeling relaxed and sharing that with your family and friends. Your mum must be so relieved as we all are.
On Mary that ‘nice tiredness’ is a wonderful feeling. How lovely to spend some time with the baby and getting cuddles – you lucky thing then playing cards till midnight – your hustler!! It is really good to hear you back on form and enjoy the rest of your aunt’s visit. Remember to rest too you have been through a lot this last week!!!
Wayne I’m sending you and Mayrann my love and wish I could do more. I do hope the present treatment sorts the problem out and things start to get easier, I must admit I’m a bit sceptical about herbal remedies that make grandiose claims. Wish I could answer your questions but as M1yu says perhaps start a threat and you will get better chance of more people knowing the answers. Wishing you both a better week to come.
Hi Louise and welcome – sorry I know nothing about Lentrazole. Like you when I look out of my window in the morning at the birds and squirrels – red ones here in the Highlands it fair lifts my spirits!! The young ones are coming to our feeders at the moment and they are so sweet – they have little scrawny tails and scrabble ungainly through the trees, so funny.
Roz I know Stonehaven beach – beautiful. Glad you enjoyed your fish and chips!!
Marina – welcome and good luck with your scan results on the 8th. We all know what the waiting is like – I do hope you have a positive results and please keep us posted.
Dianne – sailing tomorrow I think. Hope you get on board safe and sound and your clothes fit in somewhere. You must definitely be ready to relax in the sun – I am so jealous. But we had lovely sunshine up here in Inverness and I have spent my time lying in the garden chatting with my daughter and catching up on gossip instead of weeding, digging etc. M1yu – I slept on the grass and it was lovely.
Didn’t get any results on Thursday but I am not worried as I thought that was wrong – seeing onc before next chemo on Tues so expect to get them then. I’m feeling so good that I’m not worried about anything. Working tomorrow and Sun night but feel nice and rested and ready for it. Round two with chemo starts next week but this week has been so good. Remind me if I’m feeling crap during the next two weeks that it is only temporary!!
Hope you having good weekend Nicola, Alison and Julie and lots of love to you all my dear friends. As Nicole says here’s to a pain free, worry free weekend - I’ll drink to that. Love and hugs to you all.
Anne x x
Hi Wayne,
When I was first diagnosed with lung mets last November I did have some fluid which fortunately cleared with strong antibiotics, then my oncologist decided to put me letrozole and next week I will find out if it has been working, if not I think it will be chemo. I do know of other ladies who have had their fluid drained and then gone onto chemo. I know what you mean it is all so scary, I am sure Maryanne is in good hands and lets hope they sort this fluid out soon so she will feel better and then can proceed with treatment. She is lucky to have a loving, caring husband just as I have.
Hope you both have a good night and things are a little better tomorrow.
Thinking of you both
Love Marinax
Scared! Femera didn’t work and I begin chemo Monday 13th. I have taken a lot of comfort from the way M1Yu has responded to stuff. Please say that I am not the only one who has gone down a blind alley treatment wise. I feel very negative, sorry. Loads of tests to have done, all marked urgent… I am going to have 8 cycles of FEC-T whatever that means. The BC nurse will explain all before I begin. I really thought I was on my way to keep things in check for a while. I have just had my 3rd dose of iv zometa and hope that has done something.
Help please…
x sarah
Hi Sarah
Just re the chemo - 8 cycles of FCE-T will probably mean 4 cycles of FEC followed by 4 of one of the Taxanes (there are several all with similar names - I had Docetaxol), probably on a three weekly cycle. The FEC is actually three drugs(F,E and C - can’t remember what they stand for) and is the gold standard chemo for treating your primary breast tumour. The Tax chemo is the gold standard for treating mets - not just your bones but any stray cells that might be lurking elsewhere.
The Taxanes are relatively new and are considered a big improvement on the previous chemo - they are the so-called third generation drugs. So your treatment will be hitting your cancer hard. I try and take comfort from the fact that as the Tax drugs are quite new, they aren’t fully figured into survival rates yet - so I am hoping those of us that have had them will do better than the tables suggest.
Also, there seem to be some breast cancers that go to the bones and no further. They progress slowly and can be kept stable for long periods of time. Let’s hope we are both in this category. My onc at outset also explained that there are many treatments, some that will work better than others, and we may change course many times over the years.
Hope this has helped a little - you’re in a horrible limbo at the moment, but most of us feel better once chemo is underway.
Love Vanessa xx
You are a star, Finty! I suppose I have been frightening myself reading about SEs. My onc says not to expect any change after the first cycle, I suppose Zometa might have been doing its bit too. I have just been into my friend knitting shop and she has given me wool and a nice book so I can knit myself a hat! Will do this in the coming week, give me a bit of focus. It’s useless to ask about SEs I suppose cos we are all different.
thanks for your post x sarah
We certainly are all different - I found tax quite hard, but the FEC not too bad at all - certainly nowhere near as bad as my uninformed impression of chemo pre dx. My 77 year old father had 6 lots of Tax with very few se’s - go figure. One thing I regret is that I didn’t start all my diet changes until after chemo (apart from giving up dairy half way through). Reading some of the other threads here, some of the ladies doing all the fresh juicing etc seem to have had an easier time of it - so maybe that is worth researching and planning for.
I also remember Jane Plant claiming to have kept her hair through chemo by drinking a specific juice concoction - although it was probably a different chemo to the ones used today. Even so, might be worth a try?
How have your veins been with the Zometa? Given that you will likely be on Zometa for a long time, if they have any problems finding a vein you might want to ask them about having a port fitted. Although it means having a small op, it makes chemo much easier and less stressful. FEC is quite tough on the veins - mine still haven’t recovered.
Vanessa xxxx
I have skirted around the diet issue a bit. Eaten far to much sugar etc. But am now focussed on lots of fruit and veg, and limnited dairy. Still have meat though. Mainly fish, and chicken. Red meat once a week. I am hoping that the Penny centre will help me with this. I don’t do much dairy anyway, milk on cereals and in tea. I suppose I could give that up, what do you put on cereals?
My veins are fine so far. Had no probs at all so far. How has the port been for you? Do you have to have in cleaned out etc? Is it really visible?
X sarah
I use soya milk, but there is also rice and oat milk. The port has been great for me after a few teething problems - my veins were very shy and it was a bit of a nightmare trying (and usually failing) to find one. It’s quite common to have one if you are on long term IV treatment. It has to be flushed out every 3 weeks - but as I am on Zometa every 3 weeks indefinitely it’s no problem. It’s not really visible, but you can feel it under the skin. Anyway, just something to bear in mind.
hi my name is teresa i was diagnosed march 2009 with primary and some lung and bone mets i had five lots of fec and it worked well. i was put on arimedex but that doesnt seem to have worked as primary lump has come back.fec wasnt too bad at all only had a sore mouth.i had great results after only one round.they were going to operate but there has been so many delays the lump has got quite big.going to see surgeon on monday but have some fluid so am taking strong antibiotics at the moment. have been reading the threads for a few weeks and would really like to join in.am inspired by some of your storys. have especially been reading your story wayne, how lucky marianne is to have a man like you.have they had to drain her lung again poor thing i believe that isnt very pleasant.does anybody know if you can have the same chemo more than once i would certainly have fec again.
Hi Ladies,
Been a nice day in Lincs, so been in the garden pulling some weeds. Got an appointment with the breast surgeon on Thursday, see him every six months as the primary is still in place and he does a mammogram/ultrasound alternitivly, so its the mammogram this time, and dont the squeeze, hopeing the Arimidex is still working.
Mary, Remember to get some rest, as Anne says you have been through it with you hip pain and appointment, but its nice to have visitors, hope auntie isnt wearing you out to much.xx
m1yu, Well I think I would like to work with you if you bring cakes and sweets.I am so pleased that you had a good day, dont be presurised into doing to much untill you feel it is right. I agree with Nicola about the support and encouragement from family and friends helping us along this journey.I know I havnt been on this site for that long but it is good to come along each day and ‘talk’ to you all.xx
Nicola, Hope you didnt have to trade to much for your time on the laptop, knowing kids he got the most out of it.xx
Anne, Good luck with getting your results on Tuesday, and glad you are feeling good. Fingers crossed for chemo week, hope work is ok.xx
Wayne, Love to you and Maryann.
Sarah, Nice to see you on this thread, the ladies on here are lovely and are a wealth of information and support. As you knoe I havnt had chemo, but have had zometa, only se I had from that was the shivers but it only lasted a day or two, how often are you having it?? I know it must be really worrying when things dont go according to plan but your team do seem to be moving things along for you, Its the waiting that is the worst part, we are all with you. Vanessa is right in what she says about the differant treatments, my onc said the same when I started on this journey 4 1/2 years ago, my mets on the bones have been kept under controll for that time with the primary still in place. I only had 10 cycles of Zometa as my onc says it stays in your system for a long time. xx
Julie, Alison hope you are both well and having a nice weekend.
As Mary and m1yu said, welcome to the new ladies.xx
Lots of love and hugs Roz xxx
Hi girls
Beautiful day up here in the Highlands hope it is lovely where you all are and you got some sunshine.
I’ m sorry to hear you are having such a hard time Sarah, at least they seem to be doing your tests urgently so you should have answers soon. Love the idea of knitting your hat! I love knitting and plan to get something on the pins soon when I have finished off other projects I am half way through. I’m very good at starting things then getting distracted and start something else!! Good luck with your appointment on Monday. I did the FEC/Tax chemo and did not find it as hard as I expected, unlike Flinty I found FEC worse than Tax as she said we all respond differently. I do hope you have an easy time of it.
Hi Terri and welcome. Sorry to hear that Armidex is not working. I’m not sure how often they do the same chemo twice and they did think about putting me back on one I had previously done so it must be possible, I support it depends on situation. Good luck with your appointment on Monday, hope it brings some answers and a plan of action. It always feels better when there is a plan in place.
Hi Finty – I followed your trip to Penny Brohn centre it sounded amazing. Love your relaxation tips I am looking for a CD at the moment what would you recomment?
Mary hope you are having a fantastic weekend with your aunt. Have you been out at all to that beautiful beach by you? Hope it is not taking too much out of you.
Nicola, hilarious that you are buying laptop time. Perhaps you should withdraw ironing or cooking rent for room to bargain a cheap way of borrowing it lol.
My1u hoping you are having a wonderful celebratory weekend and you get a good plan for returning to work when you speak to your boss but make sure it’s slow and easy. You must be so excited – love it!!
Roz hope you enjoyed your weed pulling – isn’t it so relaxing or is it just me that’s mad! Good luck for Thursday, hope everything still working and mammogram not too uncomfortable. Brilliant that your bone mets have been under control all that time gives us all so much hope - thanks.
Hope our Dianne is having a wonderful relaxing time, missing her.
I do hope that things are getting better for you and Maryann Wayne, thinking of you both.
Julie & Alison hope you having good weekend. Goodness me this thread is getting so many lovely new people I’m struggling to keep up – hope I haven’t missed anyone and if I have apologies.
Lots of love and hugs to you all, have a lovely evening. Anne x x