This is turning into a mega thread now - but its great isnt it? You are all so lovely
I dont know where to start!!
Congratulations to Allie on your decreasing tumour markers and also the possession of your new mini!!! Hope that you’ve had a good razz in it by now. Was interested to read that you get a local with your Zoladex. I used to years ago when I had it last time but they dont do it now - its straight in for the kill of the giant needle. I am that tense that I tell them to do that one before the Zometa so that I can relax a little. It stings for a few seconds but then I forget about it. (I had a mole removed from my lower stomach the other week - the local really hurt, so I am glad that I dont get one with Zoladex!!!)
Congratulations to KatherineM for keeping liver tumour on a level key. Interesting and positive news to hear about bone mets. Where are yours? And what treatment do you have?
Ferber - Good Luck with liver scan and chest x-rays next week
Jacksy - Good Luck for your scan results tomorrow
Manon, JaneRA and Pink Dove - Hello
Dawn - hope you are having a brill time in Scotland and that little ones are behaving!!
Kay - I really do hope that you have tried to push your nerves out of the window and had a relaxing weekend. I really will be thinking of you on Tuesday - and, look forward to your updates.
I had appointment with Onc Reg on Wednesday. Bone scan had showed spread!!! I am bothered but it isnt as drastic as I thought it could be iykwim. Original dx was left hip/lumbar region and spot on rib. Now I also have right hip, a spot on my spine (about 4" down from nape of neck) and some possibilites a little lower down. My cyst on liver couldnt be seen on ultrasound but 2 fatty bits of tissue on good boob have shown on CT! So, an oophorectomy is being arranged and a mammogram. My fingers are crossed about being in and out for oophorectomy - following that, it will be a change from Tamoxifen to Arimidex. So, although my original concerns were over my enlarged liver (which its not now), it seems that other bits have been brought to the fore.
My love and best wishes are sent to all of you - especially to Kay this week! x
Your bone mets sound similar to mine, tiny spots on hip, bigger on sternum, spine just as you say and the joker in the pack right arm about halfway down. I had absolutely no idea about this just two months ago, maybe had some aches but really its with hindsight.
I am having zometa every 3 weeks with taxotere and then my understanding is that I then switch to four to five weeks. Are they offering you bispophonates ? I don’t think its not chemo that is healing my bones, its the zometa. Anne, you know you can get emla cream, put it on a dollop over the injection site, cover it with a plaster and then wait 30-40 minutes, you wont feel a thing. I get the emla from the GP, and used it on friday when the accessed the port, and then used to do it when I had zoladex before, no way could I do a zoladex needle without it…tense wouldn’t cover it !
Jacquie- thinking of you tomorrow, let us know when you can.
kay - keeping you in my thoughts as well.
Dawn - hope you get back in one piece, I may be commuting to and fro, but I havent been brave enough to go through an airport!
Hello you darling girls,
I’m missing you all and have only been away 48 hours!
Kay – It must have been a bit of a gulp moment seeing HDU, but like you say, better to have seen it before you wake up there! I’m thinking about you so much, I really hope you can feel strengthened from all our feelings of support coming your way. I’d give you a big hug if I could, and we’d all come in with you if we could, to hold your hand. (Not sure how your OH would feel!). Just don’t feel alone, whatever you do. We’re all rooting for you.
Manon – Good to meet you, but sorry to hear you’re ‘one of us’. I’m glad you feel so well – it’s true for me too, no cancer symptoms, just masses of problematic side-effects from the drugs. You’re doing the 5k race for life? Good for you. I’m feeling terribly pudgy too – managed to lose a couple of pounds the other week when I was fluey – now I’ve put more on! Trouble is every time I exercise I feel wiped out the next day. This wasn’t happening during chemo (except the first week) so it’s a bit depressing. Must be the Tamoxifen I think. Good luck with your ‘training regime’, whatever form that takes…
Cathy – Do I understand right – you’re at work on a Sunday morning, catching up cos of chemo this week??!! Are you mad??! Wild horses wouldn’t drag me into work on a Sunday, especially when I have the perfect excuse for being behind.
Pinkdove – that’s good news that you’re better physically now than a year ago. I love getting out for a good walk – clears your head and earns you a treat when you get back (preferably chocolate cake). When you say you’ve lived with it since 2004, do you mean bone mets or liver mets?
Dawn – What a shame about the rain - typical. It must be great catching up with your family though, and having them spend time with the children. At least tomorrow it’s a quick flight back – they’ll probably be a bit shocked that all the attention’s suddenly gone away. Hope they’re good on the plane for you.
Sixpen – you said: ‘you are all so lovely’. Well thank you very much, what a lovely thing to say. Made me feel all pathetic and squidgy inside. I think I said this on another thread but I’m sorry to hear about the spread in your bones. It all sounds pretty disappointing but you don’t sound devastated/shocked, would that be a true reflection? Hang in there girl.
Well, better sign off and get organised for tomorrow. I’m dreading my results but soon I will know the best or worst.
Have a good week one and all
Lots of love
Jacquie xx
I am gutted about my bone spread - but after all the aches/pains and funny feelings, it wasnt as bad a spread as I thought it would be iykwim??? (Please dont worry, I’m not offended)
I dont like the fact that its spread - Tamoxifen, Zoladex and Zometa dont seem to be doing their job??? So, I am relieved to be having oophorectomy - hopefully stop that bloody oestrogen!!! (Blood tests had shown that I was still pre-menopausal after giving the Zoladex a couple of months to work - though last period was in October last year).
I am so glad that I took up my concerns about my liver otherwise who knows…
(They dont do routine scans at my hospital - just seems to be if you have concerns)
Once again, Good Luck Everybody for the week ahead - please let us know how you get on
Had my original b.c. diagnosis in 1995 then diagnosed in September 2004 with bone mets (in every vertabrae in my spine plus a fracture to finish it off as the light bulb didn’t go on with my surgery) and then 3 weeks later found out it was in my liver quite extensively so had paxitaxol at that time. Had emergency radiotherapy at that time as well for my fracture but my spine feels so much stronger now (I’ve also got it in my pelvis, rib and femur) and am on no painkillers at all.
Have been on Xeloda since September 2006 when my liver started to play up again but really seriously this time and was told I only had 3 months to live but could try the chemo although they didn’t think it would work given the state of my liver and here I am still going strong and desperately hope it continues! Had a scan on Thursday for my liver and saw my oncologist the next day with the results and my tumours have continued to shrink over the past 9 months rather than ‘no change’ so am really relieved about that! I’m also on pamidronate for my bones and have been since 2004.
You all sound a really upbeat group! There are 5 of us secondary ladies in our support group and we’ve decided to meet separately (by invitation only) and our first meeting (over dinner!) is tomorrow and we are all similar in our outlook so really looking forward to that.
Had intended just to log in quickly and write a short post …but so many people have posted since my last one on Friday!!! Thank you all so much for all your good wishes and support - it makes a huge difference to me. I had this image Jacquie (from your post) of you all surrounding my bed in HDU holding onto a finger each - just room for David too!! I’ll hold onto that image I think but I’m actually feeling less apprehensive as it gets closer. I think my greatest worry last week was over the scans and maybe them showing the tumour had grown back close to the vein and the op therefore being a non-starter. So I’m still pretty scared but nothing like as panicky (in fact quite calm - just want to get it over and done with now).
Have had a lovely weekend and the weather has been fantastic. Decided not to go to Box Hill but stayed more local and walked about 2 1/2 miles along the North Downs Way from Newlands Corner near Guildford to St Marthas Hill and back. Really pleased - it’s the furthest I’ve walked for a couple of months and included a (little) bit of “up”. Also went and chose Catherine’s 21st birthday present - some jewellery - as it’s her birthday in a couple of weeks. Working tomorrow (lots of people have told me I’m mad to do that but definitely not as mad as you, Cathy, if you’ve been in at work on a Sunday) because it will take my mind off things and also I have this great desire to leave things pretty well sorted for the therapist who is covering for me.
HI Manon! Glad you see us as “cheery” and want to join us - you are more than welcome though I’m sorry to hear you’re “eligible” to join this group. Would love to join you in the Race for Life but think I’ll still be recovering. That’s my excuse anyway! Plus I’ve never been any good at running distances. Used to sprint quite well many years ago (when I was a fraction of the size I am now!) but anything of any length has always been a nightmare for me. So I definitely would have to walk it! My aim is to recover from the chemo and op and then take up long distance walking again (we’ve walked Hadrians Wall which is 84 miles and over 100 miles of the North Downs Way) - would love to do the Coast to Coast (Cumbria to Yorkshire) which is 190 miles. Hope that’s not just a pipe dream.
Sorry to hear, Sixpen, that your results weren’t too good, despite the good news about the liver. SOunds as if you are hoping the oophorectomy will be soon. Fingers crossed that that works well and the lack of oestrogen as a result will work better than the drugs. Let us know how things are going.
Sorry the weather has not been kind to you Dawn. Sophie and Jack must have had a wonderful time though being spoilt rotten by their Gran and Auntie. Hopefully it’s given you a bit of a break even if you’ve not slept well. Will email you about Friday - think it will depend on how I am whether they’ll let you in or not but hopefully all will be well - should then be coming out of HDU that afternoon anyway. But as I said, you need to focus on your appointment etc and do what you feel is right for you - I’ll understand completely if you decide you’d rather not visit.
Good luck tomorrow Jacquie with your appointment - and to everyone else who is having scans/results/check ups etc
Thanks for your good wishes about our get together today.
I think the main reason why I did say what I said is to show even when our diagnosis is pretty dire (and mine was at the time) we’re not statistics and sometimes we do prove them wrong and I hope it continues for us all for a long time to come.
Hi all,
Crumbs I’m having trouble keeping up with everybody.
Welcome Manon to our club, I cannot believe you are thinking of doing the Race for Life! Are you mad? I’m with Kay and one of the walking brigade, hoping to tackle Snowdon in the summer when the new cafe is open.
Dawn, have you recovered from your trip up North, sounds like the little ones were spoilt rotten.
Sixpen- sorry about the spread to your bones, but at least the old liver is ok, it must have been the tamoxifen that was making it play up.
Pinkdove have a lovely meal tonight, I’m sure you’ll enjoy it. You certainly give me hope to keep going.
Kay hope the nerves aren’t to bad and you are looking forward to your “high, hot & helluva lot”! Only joking!
Cathy- I had to work yesterday too- I did a Wedding Fair, which was nice as it was free and we were fed too. Had some good leads for wedding favours- don’t like doing them as they can be rather fiddly but as Tesco says “every little helps”
Jacksy, Ferber I hope appointments, scans etc went ok, forgive me if I have forgot anybody I’m having a typical blonde moment.
Take care
Allie
Just back from rainy Scotland, babies in bed asleep, and we are stretching on the sofa with glass of wine.
Sorry but this is a message for Kay to say, goodluck honey, not that you need it and am thinking about you all the time and hoping that everything goes smoothly with your op and hopefully will stick my head round your door Friday, as long as your hubby emails me to say OK. And of course, will post the email on here to let everyone know how you are.
Hope you are not stressed too much though and are all ready and packed for tomorrow. You are so brave and I so want to follow you on this route (I think!).
Take care Kay and look after yourself and remember, we are all there holding a finger each and not letting David have much of you on his own LOL.
Just another quickie mainly to wish you all the best again Kay, I will be thinking of you along with everyone else. This time next week it will all be over and you will be on the way to your recovery – good luck lots of xxxxxxxs
Cathie – I am glad to hear you have some shrinkage in the liver. If I remember right, I think you are just ahead of me with the bone infusion, my 3rd treatment is on the 8th (every 4wks) and I am only now taking the odd pain killer, so the Zometa seems to be working for us both. I must get off my fat b*m and do some walking to get rid of my excesses.
Dawn – sorry you didn’t have good weather, but it will have been a nice change for you all. Is it this Friday you have your meeting with Kay’s prof? If so, hope you get the news you want to hear.
Jackie – I hope you got good results today!
Allie – sounds like you’re busy with the choccies, when are you going to get round to the Italian Job?
A big hello to you new girls.
Anne - I asked my hubby if he knew what iykwim was, he said I would probably find it in a medical dictionary! I googled it and found the answer.
Must close now, but as usual, I wish everyone well and sorry for not mentioning everyone individually.
Hi everyone,
Been living with primary and secondary bc since 1999 when diagnoised in bones at the time of primary. Meds have been hormonal and i have had tamoxifen, megastat,letrozole (got 4 years out of that one). Recent bone and ct scan show further spread to the bones and also the liver. Meds changed to aromasin, the thought being that I have gone well previously so wanted to try this first. Have been heartend to read how you all seem to be just getting on with life and that is what I am trying to aim for, for myself. So if you guys don’t mind a kiwi on the otherside of the world tagging along and asking questions I’m here for others as well.
Am about to have my lunch and then go off to the hospital. Wanted though to post quickly to say again how much I appreciate all your support and good wishes. Jacquie - really hope that the news yesterday was ok. Good luck, Dawn, on Friday - will hopefully be “with it” enough to be thinking of you and willing you good news.
And welcome to you kiwi - great to have someone from so far away though it’s a long way to come for any “meet”! Or perhaps we could claim we had to have a get together down under - would love to travel round NZ. (My son has just got back from a few months there (and in Fiji) and really loved it, particularly South Island) What do you think, folks??!!
You have done so well, Kiwi, on previous treatments but you must now be feeling somewhat disheartened by the spread. Hopefully the aromasin will work equally well as the earlier hormonal treatments. Fingers crossed for you - when will they scan you again to see how it is going?
Right - lunch, car, hospital…
Lots of love to you all and I’ll be back in about 10 days with lots of news about liver surgery and high dependency units…
Allie - you are probably right and I must be mad. God knows if I’ll be able to do it as i am all aches and pains from the Arimidex at present but I plan to have a go. I don’t have any bone mets so it’s really just the fatigue and the aches and pains from the treatment that slow me down - and the aches are more in my shoulders than in my legs. I’ve signed up for the ‘Start up’ fitness programme in cambridge. It’s designed for people who are getting back in shape after illness so they go very gently. I have until early June to get myself up to scratch!
Hi jennywren - I live in Newton, about 5 miles south of Cambridge but I work in Cambridge itself. I’m getting most of my treatment at the Nuffield as i’m lucky enough to have health insurance through work but I go to addenbrookes for the occasional hi-tech test or for really important things like the ‘look Good Feel Better’ make-up session.
best wishes to all and i’ll keep you posted on progress
Hi Everyone,
What a lot to catch up on!
Sixpen (Anne), of course you would be gutted about your spread. Thanks for not being offended - I was just trying to read between the lines. Let’s hope you can nail that oestrogen once and for all really soon. My reg said yesterday that they’ll wait a year with no periods before they consider me to be safely menopausal (stopped in July with chemo).
Pinkdove, thanks for sharing your story with us. Mets in every vertebra? - u going for a world record or something! Blimey, I can only begin to imagine being given 3 months to live. Well done you. So glad you’re still keeping on and your liver’s responding so well. I hope you had a brilliant night last night, and really enjoyed meeting up. Do tell us a bit about it.
Kay, glad to hear you filled your weekend with productive and enjoyable stuff, and were feeling calmer. Thinking of you tomorrow…
Good to hear from all of you Allie, Dawn, Jen, and Kiwigirl - thanks for your encouraging story and welcome. I think a NZ visit would be great!
Well, I went yesterday for my results.
The end of chemo CT scan shows the tumour’s 1.5cm. (Previously 3.5, 2.8, 2.1) The last scan was halfway through chemotherapy.
The registrar said that it may continue to shrink a little more if we’re lucky, with the residual effects of the chemo
and the Herceptin working on it.
My MUGA heart scan was fine so I can continue to have the Herceptin, and my blood tests showed that my white blood count is still abnormally low - my poor bone marrow hasn’t recovered yet.
Although the news is all good, I found it really difficult to accept or be pleased about. In fact I got really pigged off at people who tried to tell me how good it was.
It’s one hell of an ordeal waiting as the day draws closer, and then whatever the results, it just brings you face-to-face with the reality, which is that the rest of my life will be measured out in 3-month chunks, as I wait for each scan to confirm or deny my worst fears.
There will never be any truly good news, only the absence of bad news ‘for the time being’. I’m sure you know what I mean.
She said that even if the tumour were to shrink to nothing visible, they would still expect there to be a few viable cells there wanting to grow at the earliest opportunity.
I just felt so disappointed. I think somewhere in the back of my mind, not even consciously, I was expecting it to be smaller or almost gone. My brain tells me it’s good news and I’m being ungrateful as there are plenty of women who’d give their right arm for such ‘success’. But I just felt really gutted and like I had no more energy to keep on going.
I went out into the woods on my own and kicked a few tree stumps, cried a lot and then had a long bath. OH was brilliant and sorted the kids and their tea and just left me alone.
Today I’ve been at work and had a couple of quiet weepy chats with colleagues, who have been so kind. I don’t think I did a stroke of work.
We talked in clinic about resection or ablation, and she said that while I’m on a regime that’s working they’d be unlikely to change it. To have surgery I’d have to stop Herceptin and Tamoxifen for 6 weeks beforehand, and that’s a risk I just can’t take at the moment. I’m quite relieved that I won’t have to face that decision for a while yet.
So, that’s me. Hope I haven’t depressed you, but I needed to tell you how I’m feeling.
Love to you all
Jacquie x
You haven’t depressed me at all. I know exactly what you mean , actually I find it a bit of a relief to read what you say because its very true and puts into words alot of what I am dealing with relatives etc. I have been getting really fed up with relatives congratulating me, as they dont seem to understand exactly what you have said above,
But having said that- you results are good, they are way, way better than the alternative so thats fantastic.I am really pleased to hear that the current regime is working and its worth continuing.
I think its really really hard waiting for these results and then having to deal with them…after I had my results I cried as well, and I didn’t have to wait as well.
Have to go now as OH has just put pasta and casserole in front of me,
Hi guys,
Really interesting to read your treatments and whats going on, it just gives me so much hope and also bits of info and things that I can go back to the onco with. Am due to see him on the 20/2 so am not expecting big things from just a month on the aromasin but would be so happy to see some small sign of improvement. As to when they will rescan, not sure I expect it will depend on blood tests and how they are going.
Would love a get together down under, so start saving girls. However you never know I could win Lotto and come over to you.
I hope you don’t mind me writing on this thread because I don’t have bc myself; my Mum does. She has infected nodes in the chest & a liver met & had an op to remove all the nodes (which were infected) from under one arm.
She is due to have her final chemo tomorrow (she had 3xFEC+Epirubic & then 3xEpirubicin). Yesterday, she went for her appointment with her oncologist, to find that he wasn’t in that day & she had to see a different onc, somebody she has never dealt with before. She asked what would happen when her chemos were finished. He said it took 3 months for the effects of chemo to wear off, during which, she wouldn’t get any other kind of treatment because he said, she is hormone receptor negative & the only treatment she can have is chemotherapy.
We are all confused (& scared) because I’ve seen some of your posts & know that people are being given all sorts of drugs, most of which I don’t understand. I know that because she is HER-, she can’t have herceptin or tamoxifen for example, but isn’t there anything else she can have??
Would be very interested in hearing anybody’s comments on this.
Sorry you are here to find out things for your mum,.
There does seem to be such a variety of treatment options even for people with same profiles, its hard to make sense of it and to work out why they are doing things.
Can I suggest you search the site using the function above - Triple Negative- I tied that and lots of e mails come up. looks to me like plenty of people in this situation move on to Xeloda fairly quickly which I understand is an oral chemotherapy. Anyway have a look using that, it will certainky give you some thoughts. You can ask the doctor what plans they have to monitor the situation in the three month gap they have mentioned.
I hope this is is some help, I am sure one of the ladies who knows more will come in and add something,