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Hi everyone,

Nicola, think you need to get a laptop of your own!!!

Anne, will be thinking of you on Tue. Hope chemo won’t be too bad and good results. Hope work isn’t too busy.

Sarah, sorry that Femera didn’t work and hope FEC-T does a good job for you. I know what you mean about “bline alley”, a bit like when I found out Tamoxfien didn’t work for me. Just finished my FEC about 3 weeks ago and the se’s are still pretty fresh!! I’m a bit “unfortunate with FEC” (my onc’s words, not mine), so hope you’ll find it easier than me. Glad you find my experience comforting. As I said before, without the support I’ve got, I don’t think I can do it in my own strength.

Finty, I use goat milk, not everybody likes it.

Terri123te, sorry arimedex didn’t work. Glad you find this thread inspiring. All the best on Mon. Re: same chemo again. I’ve aksed my onc this before and the answer is it depends on how long the gap is. If we’re lucky, maybe after quite a few years, say 10 years, we can have the same chemo again and will have an equally good response. But if it’s only a short time, like a year or 2, then maybe it’s not so good and risks may outweigh the benefits.

Roz, all the best on Thur, will be thinking of you.

Take care xx

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Hi Anne

I haven’t been to Penny Brohn yet - I’m going in October, hopefully with cromercrab if her chemo is going well. I think it was scaryfox that had been and recently and had got a lot out of it.

finty x

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hiya you all you lovley ladies
ok im going too try my very best too get some facts on indole-3-cordinal when i have ill start a new thread on complimentry herbal meds so you are all more than welcome too jump in and out when you feel the times right your all very welcome reason ive had enough of feeling helpless with your hands tied so you know what they say ?
NOTHING VENTURED NOTHING GAINED, today maryanne had 3 liters drained but she was in quite a bit of pain when they were draining so they gave her morphine which then caused sickness and the chemo dont even start till monday or tues this week so christ knows what will happen there??? so thats the main reason for the new thread. anyway its now 1.15am and im tired out so bed now ,i hope you all have a good piecefull weekend, love and wishes too you all,
wayne each day passed is one closer too a cure,

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Hi Flinty

Sorry chemo brain of course it was Scaryfox I remember you saying you were going in October. It sounds fantastic I do hope you have a great time and tell us all about it and cromercrab is able to go.

Hope you got a good night’s sleep Wayne.

Lots of love to everyone, hope you all have a good day. Love Anne x x

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Hi lovely ladies,

Well it is a very very windy day in Lincolnshire, and I am going to light my fire when I have posted this message.

Mary, Hope auntie is behaving herself and not keeping you up have the night playing cards.xx

Ann, Hope work over the weekend hasnt been to tireing, will be thinking of you tomorrow. xx

Wayne, Good idea about the new thread, I am sure a lot of people will be interested, I think we all come to a point where we look at all the alternatives to conventional medicine. I hope Maryanne has been ok with her chemo today, I am so sorry she had such a bad time with the draining, this bloody disease is crap.Will be thinking of you both. xx

m1yu, Not sure when you are going into work again, but good luck with talking to your boss. xx

Nicola, Hows the bargaining going xx??

Marina,Good luck with your getting your results on Wed. Hope the Letrozole is working. The waiting is the worst part, the trouble is we are all differant in terms of what works and for how long, we just have to put our faith in the fact that they know what they are doing. xx

Vanessa, so pleased taht you have been able to give Sarah some lovely sound advice.xx

Terri, Hope you got on ok with your appointment today and have had some positive newa from your onc and your treatment can move forward.xx

Alison, Julie and Nicola hope you have all had a good weekend xx Hope I havnt missed anyone out if so I am sorry.
Off to light the fire now.

Lots of love Roz xxxx

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HI Ladies,

Goodness what a lot of posts since I last looked!!! It is lovely to see so many new people join us!!!

M1yu,it was so good to read your post,you sound so upbeat,it is wonderful!!! Glad the day back at work went so well,and you got the big welcome from your friends and colleagues!!! As others have said,don’t overdo it!! I think we all benefit from the love and support that we find on here, I certainly don’t know what I would do without you all!

I don’t think you should give up the counseling just yet,perhaps make the appts a bit further apart,there is always something that it is good to get off your chest! So pleased for your Mum, poor lady must’ve been so worried about you, that increased the tension between you, but now she can relax and you both ca enjoy some quality time together!!!

Nicola .don’t panic about the letrozole,because it doesn’t work for another people,it doesn’t mean that it won’t work for you, you seem to be doing really well at the mo,so hopefully that will continue…get the laptop sorted!!!

Sarah…sorry you are going through such a worrying time, but as you say M1yu’s news is so encouraging for all of us!!! Hope that the se’s from the chemo won’t be too bad!! Finty also had some encouraging facts about the chemo drugs,and although you are very scared now, once your treatment starts you will hopefully feel better!

Marina welcome, and good luck with the scans, and bloods on Wed!! always a scary time, everything crossed for you!!

Louise do hope that Letrazole is working for you,and you get good results from your scans…when do you go for them?

Terri welcome really ,hope you have had some positive news from your surgeon today,and a definite decision has be made about any further treatment!

Roz will be thinking of you on Thursday when you go for your mammo,and yes they do squeeze hard!!! Hope that Arimidex is still working! By the way Roz,have you only had 10 cycles of Zometa in the 4!/2 years!!!

Anne do hope you are having a good day, and be thinking of you tomorrow,lots of luck with the results…be holding your hand!!!

Wayne and Maryanne, sending lots of love, and hoping things are improving!

Julie and Alison hope you are both okay!!

Bet Dianne is having a fab time, can just see her at the Captain’s table tonight!!!

Well had a lovely time with Auntie, but I am worn out!!! We were playing cards until 2.30 am and she was still up before me!!! It was a job to keep up with her…she’s 78!!

Do hope I haven’t left anyone out, but I am thinking of you all, and sending lots of love, Mary xx

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Hello my lovelies!

Welcome to all the new names, hope you will find as much love and comfort here as I have - it’s a great family here!

Very mixed day here on the South Coast but mainly ok though wind and rain look to settle in for the night.Got builders in at the moment, having a balcony built and Frenchwindows put in so hope the weather doesn’t delay the project.

Glad you are feeling better Mary and enjoying the visit though it sounds like you’ll need a few early nights!!

M1yu, so glad you enjoyed going into work, hope you get to talk to your boss and get things sorted but don’t do too much too soon.I think Mary is right about counselling, I wouldn’t give it up completely.

Ann so pleasde the chemo hasn’t been too bad and hope the next session is as troublefree.Will be thinking of you with your appt.Hope the scan results will be there soon and we’ll have more good news to celebrate.

Roz hope mammo not too uncomfortable. I wish I still had a real fire,we had them in London but the house here in Sussex is just central heating, ther’s nothing so cosy and comforting as a real fire.

Nicola try not to worry, as the others have said, different treatments work differently and for different lengths of time for us all, the main thing is that we’re being kept an eye on and can be moved to other treatments. Hope you manage to get hold of the laptop tomorrow so I can see you on livechat.

Wish I’d climbed into a trunk and stowed away with Dianne! I bet she’ll have a great time and will look a picture in all her new gear!

Wayne, thinking of you and Maryanne hope things start to get easier.

Will have to get to know all of our new friends by name but till I’ve managed that I wish you all luck with appts, treatments etc, do keep us up-to-date on how you’re doing.

Wishing you all a peaceful painfree night, lots of love Julie xx

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Morning all,
Can’t possible comment on everyone but wanted to say to M1yu that I am so so impressed with your determination to go back to work. I’ve followed your trials over the past few months and am thrilled that you are able to do what you want to do. Don’t over do it though, I remember going back to work 9 years ago after my primary diagnosis, I had got a new job just prior to my diagnosis and was determined to start the new school year despite still having chemo. I only did 2 hours each morning and didn’t go full time till January. I got the most incredible support from new collegues and I think it helped my recovery by having a purpose and by feeling valued. I wish you all the best.

In comparision, this time round I took the decision to not go back at all and am enjoying spending time digging up lovely potatoes in my garden, reading heaps, and swimming most mornings. I hope everyone is well and has a good day.
Louise

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Hi Mary, yes I have only had the 10 cycles in the 41/2 years. Had my last one Nov 2006, had a year then went onto Bandronat tablet. I did ask my onc if I should stay on the zometa but he had had two ladies who had the problem with their jaw, so wasnt keen on me staying on it. He did say that the treatment does last for a long time in the bones, but I suppose the Bondronat takes the place of it. I see the orthopedic surgeon every six months who did my hip and he xrays the other one to see if it is deteriating, but it has been stable for all that time, I keep my fingers crossed every time I see him, its worked up to now. Hope you are having a good day.

Love to everyone Roz xxxxx

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hi all saw the surgeon and although the lump is large he could still operate but because i have some fluid on my lungs he cant at the moment. i am on antibiotics for the fluid but think its cancer cells again as i had them at origanal diagnosis. so back to the onc but not until two weeks than it will probobly be more waiting for scans and things. the time waiting scares me . surgeon says stay on arimidex as it could still be helping until onc decides what to do. when i first had a local reoccurrance i couldnt understand why they didnt change hormone staight away, i realise that arimedex is the top drug but now i am ill again because they didnt change it. my bcn says the hormones are the same but i have read that some of you have had more success with changing to different ones.i really like my onc and want to trust him but am not sure now. sorry to go on but as my last scans have all been clear my onc was convinced i would be ok.

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Hi all,

Wayne, hope Maryanne is feeling more comfortable. Have been thinking of you both. Hoping chemo was OK to go ahead so that you both can feel that you are getting somewhere.

Julie, a balcony sounds lovely, my mum always wants something like that if I ever get round to buy my own house/flat. Hope your building project won’t be delayed too much by the weather.

Louise, thanks for the compliment re work. I feel a bit guilty for receive full salary for doing next to nothing, so try to do what I can. I’m also missing it quite a bit because really enjoy it. My psychologist agrees with all of you that I should take it easy. I suppose if I was near retirement age (maybe in my 40s), I’d have considered early retirement. However, being only in my 20s, I feel that I’ve only just started my life, career… and bc isn’t going to bring my life to an end just like this… it may put it on hold for a while, or slow it down, or change course.

Mary, hope you’re having some needed rest.

Terri, hope you find something to do to keep you busy while waiting, it’s horrible. I can relate so much about wanting to trust your onc but not sure. I chased him lots when I realized that Tamoxifen wasn’t working for me and it took him 1 more month to send me for the scans and the rest is history. But then again, he made the right decision on the chemo I’ve just finished and he was one of the persons insisted me carrying on with it when I felt like that I’ve hit a brick wall. The argument was that they don’t want to keep on changing drugs because once we’ve used it, there’s the possibility that we’ll develop resistance to the drug in the future, so they want to use it for as long as poss. However, I just hope the doctor would listen to us patients a bit more. They’re the professionals indeed, but nobody knows our own body better than ourselves.

Oh, well, no news about PET scan (yes, haven’t even got an appt for the scan yet, let alone and the scan results)! So, appt with my onc tomorrow is now cancelled. So, having Zometa and starting Zoladex and Arimidex - some new drugs tomorrow but no new nasty surprises please!! Honestly, who cares about PET scan? As long as I’m on some sort of treatment for BC, I’m fine with it. However, it’s good to know what’s exactly going on inside my body and if radio or op is indeed required, I’d rather they get on with it. I knew it was a bit ambitious to get PET scan results tomorrow when I was told that BUPA hasn’t been informed yet last week.

Seen psychologist on Monday and we’re seeing each other again in about 2 weeks time. Will make that one an open ended appt. - It will be the last one for now and I’ll be free to contact him by email/phone call when things get difficult again and when I feel the need to talk to him again to unload. A perfect agreement I think! Thanks for your concerns in this area.

Oh dear, this has turned out to be a marathon post!! I’d better stop before you all fall asleep.

I’ll love you and leave you for now xx

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Hi Girls,

Terri so sorry you are going through such a worrying time, as M1yu says we all want to think that we can trust or oncs, but I agree that we are the best monitors of what is going on in our body. I had a similar experience I kept saying my ribs were sore, but he didn’t give me a bone scan, but I had two CT scans in three months. It wasn’t until I was in a lot of pain that he finally did a bone scan!! I do hope that the time passes quickly,and the antibiotics do their stuff,and you are more comfortable!

Roz…it’s fantastic that you have been stable for all that time…long may it continue, hope that everything goes well tomorrow!!

Julie hope the balcony job is going well, it was an awful day here today, hope it was better were you are!!

M1yu so pleased you are back at work, and enjoying it…but pace yourself!! Good idea to keep the psychologist on board,and as you say if things get difficult you know where he is!!!

Wayne, hope things are settling down.and Maryanne is more comfortable,stay strong!!!

Anne, hope that you are not having too many problems with the se’s,take it easy, rest as much as you can!!

Hope all you others ladies are okay, thinking of you all!!!

We have bought a new TV, so spent the day,setting it up etc. really pleased with it, what a difference to our steam operated one!!!

Take care, lots of love, Mary xx

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hiya you lovley ladies
ok update, after 8 days maryannes out of hospital with a wheel chair ,im hoping its nothing too do with the bone metz,doc said its needed where shes weak, which too be honest she really looks tired and weak which i would say is too be expected!!! while in hospital they draind 4 liters of right lung got a chest infection and urine infection, im not bloody joking you could not make it up!!!, anyway she starts chemo on the 22nd sept chemo is called capecitabine (xeloda) now its tablet form and they say theres hardly no side affects ? well ive never heard of that so has anybody had any experience of this one and also tell me if im wrong but tablets twice a day instead of fluid is it as good? just got so many questions anyway i hope each and everyone of you are feeling good ,love and wishes too all,
wayne each day passed is one closer too a cure

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Hi all,

Mary, a new TV, how exciting! Well, I’m not officially back to work yet, still doing things at home. I don’t really want to go back to the office when I might still need radio and op. So, will have to wait for the PET scan results to fully inform them.

What a day it has been!! Not a lot has gone to plan today.

Been shopping this morning, didn’t realize that I’ve brought neither cash nor card until I arrived at the shop!!! Had to walk all the way home and back again. That’s not a very good start, thank goodness it wasn’t raining.

A bit of a messy day at the clinic, too. No news about PET scan because there’re some prob at the hospital in Cardiff and they won’t take any new patients (except emergency) until mid of Oct. So, my onc is in the process of getting authorization from BUPA to get an exception to do it at Bristol (not really banking on this), otherwise have to travel to Watford. I think I’m just going to go straight to Watford if I can get a lift from friends.

Zoladex and Arimidex are still in the progress of being authorized by BUPA - what have they been doing in the last week?? And I was told that if I’m lucky, BUPA will only pay for it for the first 3 months and I’ll need to have the rest of it through my GP. Thanks for telling me, I’d gone to my GP earlier and got it underway last week. But they told me BUPA will get back to me on this next week, so I’d better wait. Talking about feeling insecure with no treatment!!!

All that info was obtained because I bumped into my onc when he was on his way out. God knows why he cancelled today’s appt and withholding all that info from me! Not the first time I said this: lack of communication. He never tells me anything until I ask him.

Zometa went ahead as planed… or was it?? The substitute chemo nurse managed to spill some saline all over me after the Zometa was finished and said “sorry about that, but don’t worry, it was ONLY saline!!!” Thanks, if it was chemo, where would I be???

Sorry about the big moan today. Thank goodness I’ve got the good news from last week to dwell on and have my sense of humour to laugh at the saline spill and the nurses claim of a “free shower“. Otherwise, I might be crumbling to pieces!! It was one of those days. Tomorrow is a better day.

Hope you’re all having a better day than me.

xx

P.S. Wayne, was typing at the same time. Glad maryanne is out of hospital!!! I’ve never used capecitabine before, but have heard it before and it was my next one in line (hope never need to get there). It’s been mentioned on here many time. You can do a search in the forum. Or I’m sure a lot will reply after seeing your post. Take care xx

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Hi wayne1965

Here is the link to the BCC fact sheet on capecitabine (xeloda). It has information on how it works, when it is prescribed, the benefits and possible side effects.

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/116/

I hope you find this helpful.

Best wishes Sam, BCC Facilitator

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Hi M1yu,

Sorry I have read your posts again, and realised I got the wrong end of the stick!!! I thought it was a bit soon to go back to work! Hope you get the scan and the drugs sorted soon!! They have messed you about a lot, I wonder do they really realise how much anxiety we go through!!

What a day you have had!! I think you will be glad to go to bed!!! The only thing you can do, is have a laugh!! Tomorrow will be better!!!

Wayne glad Maryanne is out of hospital, she has been through a rough time, it has been horrible for both of you, but lets hope that things are going to change for the better! I don’t know anything about this chemo, but there are a lot of ladies on it, so I am sure they will be along with information.

Lots of love,take care, Mary xx

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Hi girls

Beautiful day up here in the Highlands, birds singing, sun shinning, butterflies soaking up the sun and enjoy the flower nectar and baby squirrely gambling all over the garage. Sometimes you just have to soak it all up and get things in perspective.
I do hope it is a nice day where everyone is and you get a chance to smell the roses.

My scan on Tues showed no progression in my neck mets so that is very good news, thanks for everyone’s best wishes and being there with me. Onc also thinks skin mets are settling and tumour under arm down from 3cm to 2.5. I feel strange that I should be celebrating but she wants to do more scans which is freaking me out a bit. I would have been happy to stop with the good news!! No dates yet so will let you know. I did think it was mistake that they just did neck scan, anyway will try to put to back of mind but it keeps popping up – know the feeling!!

Ros – I do love a good fire. My hubbie has us all stocked up with enough sticks to last at least a couple of years and there is nothing quite like sitting in front of the fire on the chilly evenings. Pity we need it so early this year!!! Thinking of you tomorrow x

M1yu – Sorry you had such a rubbish day yesterday – I know what you mean about feeling vulnerable when not on treatment!!! Glad you saw the funny side of your ‘shower’ although I wouldn’t blame you if you didn’t after the day you had – sometimes it just goes like that one thing after another. Hope today is better and you have your wonderful good news to keep you going. It is complicated with BUPA and who pays for what. I do hope you get your PET scan over and done with soon – like you I would do whatever is quickest. You must feel a bit in limbo at the moment but try and take it easy and everything should fall into place. Enjoy the se’s receding.

Julie your balcony and French windows sounds lovely. Hope the weather hasn’t delayed work and things going smoothly. I’m with you on climbing into Dianne’s trunk – lying in the sun with good book sounds lovely.

We are missing you Dianne!!!

Hi Teresa sorry you are having such a hard time. I’m afraid I know nothing about hormone treatment being a tnbc girl but I do hope they get things sorted out quickly for you. I do hope the antibiotics are doing their job and fluid in lungs in diminishing so you can start treatment. I was telling my surgeon, onc, and GP for 11 weeks about the pain in my neck before they finally diagnosed bone mets (GP told me to go for a massage!!!) . By that time a lot of damage had been done – I agree with m1yu we know our bodies and should be listened too. I do hope you get answers soon, sending hugs xx

Sarah hope things are getting better for you and the knitting is going well. I do hope you make the Penny Brohn centre with Finty in October, it sounds amazing.

Wayne so good to hear that Maryann is out of hospital. I know that Capecitabine works well for many of the lovely women on this forum and side effects are often gentler than other chemo’s. I do hope this is the one for Maryann, how lovely to have her home.

Mary I hope you are enjoying your new TV and have worked out how it works!!! I have to leave these things to my oh as totally useless at anything technical. I used to have to get one of my girls out of bed to change a video for me!!! Love it – steam operated one LOL.

Well I hope I haven’t missed anyone out but sending lots of love and hugs to you all. Here’s to a pain free day with lots of sunshine.

Love Anne x x x x

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Hi all,

Mary, don’t worry about the misunderstanding. Lots of my workmates thought I was starting back fulltime when they saw me!!! While a few odd ones didn’t even realize I’ve been away for over a year!!!

Anne, enjoy the lovely weather. I knew what you mean about doing more scans. I felt a bit like that. We were all expecting to base the decision on the CT + MRI scans I had, but they ended up deciding to do an extra PET scan and now look what has happened!!! Anyway, good to know your good news and will be with you for your scans. Hope you’ll have a less “entertaining” experience!

Better news today. BUPA has agreed to pay for the first 6 months of Zoladex and Arimidex. Just need my onc to write a prescription so that I can start having them next Wed. Still nothing about the PET scan, but at least I won’t be in limbo for long and that‘s going to make the waiting a bit easier.

xx

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Hi Girls,

Anne glad you are enjoying nature, it does cheer you up,and it’s lovely to have all those squirrels!! That is the one thing I wish we had, we see the odd one but very rarely!!! Take it easy tonight,do hope it’s a quiet one!!!

We all know how you feel about having more scans.but go on the results of the others, it was good news!! Hope you get a date soon,and get it over and done with!!

Missing Diane, hope she is having a brilliant time!!

Well I have had a lazy day, worked out the telly, wasn’t too bad, and really pleased with it!

Well hope everyone is having a good day.thinking of you all and sending lots of love, Maryxx

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Hi Lovely Ladies,

Well been to see the breast surgeon today and had my yearly mammo, only the file with the last mammo cd was at Lincoln with the onc and I see the surgeon and he is at Grimsby so he couldnt compare it, but he did say it was still 15mm which it was last time and there was nothing else in the breast, and he would let me know when he had seen the other one but he was almost certain that all was ok and Arimidex is doing its job, I see the onc in three weeks. So came home feeling ok.

Mary, Love the thought od Dianne being on the captains table, its where she belongs nothings to good for our girl. So has auntie fleeced you of all your worldly goods or were you playing for matchsticks?? Pleased you have sussed out your new tell and had a lazy day, Im sure you need it after the late nights.

Wayne, So pleased that Maryann is at home, Im sure you will take good care of her, but my goodness she does seem to have to put up with such a lot and now the infections. Love to you both.

Marina, Hope all went well yesterday.

Julie, Your balcony and frenchdoors sound very posh. Will you have a good view from the balcony???

Louise, Im with you, I didnt go back to work either, so spend lovely mornings in bed, late breakfasts {when OH is having his lunch}, or lunch with friends, and going shopping and buying things I dont need.

Terri123te, Yes the waiting is the worst part in all this, I do hope the antibiotics work on the fluid. I also agree with m1yu we do know our bodies best. If you dont see your onc for two weeks and are worried about the Arimidex why dont you ring him and ask him about it, he should be able to talk to you on the phone, I know mine has in the past.

m1yu, Hope you eventually got your shopping done after a disasterous start to your day. What a messing about to get your scan, I thought BUPA were supposed to be the best at private medicine according to their telly adverts, but they seem to be treating you bad. Do you think the oncs think we are mind readers?
It seems you have had a better day as you have had the go ahead for your meds, at last.

Ann, It sounds so lovely up there in Inverness, birds, squirrels and butterflies BLISS!! So pleased your results were good, and its wonderfull that the tumour has shrunk. Same here with the sticks, also we have logs drying out for next year and ones ready to use this year, heaven forbid if you use the wrong ones!! Think our OH’s would make a good pair.

Missing Diannes words of wisdom, bet she is having a great time.

Sarah, Hope you are ok, not heard anything from you, hows the knitting??

Marina

Well its been a lovely day in Lincolnshire, but poured with rain while in the hospital and the sun came out when I had finished, wonder if thats an omen!
This post is turning into a book.

Love to Nicola, Alison and anyone else if Iv missed you,
Lots of love and hugs my friends Roz xxxx