I have been having pains in my ribs and back which was why I had the bone scan and ct and would you believe on Thursday I started to feel a wheeze in my chest and thought if this doesn’t go away I will have to see my doctor thinking it might be a chest infection. The doctor said thats where some of the clots are and she could hear the rattle unfortunately it might not repair itself but it has been caught quite quickly so shouldn’t cause me any problems.
The reason could be I have been on chemo for so long or the cancer its a combination.
Well I have given myself two injections so far and not to bad the answer is to be quick and grab lots of fat so the doctor said although I’m getting bruising so I will be like a pincushion might have to get some arnica.
Still enjoying the weather its great.
Hope you are well Kay and Cathy and I am feeling happier today down in the dumps on Friday and couldn’t sleep thinking the worst but it has passed, just something else to get on with.
Glad you are feeling a bit more “upbeat” about it all - it never really allows us to relax for very long does it! And always new things that it throws at us, with no easy answers ever. As you say, just something else to get on with…
Good to hear that you are managing the injections ok - arnica sounds sensible though to help with the bruising. ANd must be a relief to know that it has been caught early and shouldn’t cause problems.
Weather is great isn’t it? And such a boost. Am about to go out in the garden to dig up the geraniums, fuschias and dahlias and put in some bulbs. Might end up just sitting by our little pond though and enjoying the sunshine…
Hi Beli
Will you have to have another scan to see if the clots are dispersing, it really is a case of what next isn’t it. I am very impressed that you can inject yoursely, I’m far too much of a wuss! Did you plant your bulbs, Kay, I just sat in the sun with a book and the cat!
Best Wishes
Kathryn
Hello darling girls,
Just catching up with this thread. Great news from Kate and Gill, and Beli, but don’t like the sound of your clots! I’m glad they got you in for some treatment pdq.
Sorry to hear you’ve been lying awake at night Beli, I have too. I went to my appointment with the psychiatrist! and he’s given me some anti-depressants, and I’m seeing a psychologist for a course of sessions (I think it’ll be CBT - quite proactive, to look at ways of managing day-to-day life so i don’t keep getting overwhelmed and crashing in a tearful heap). I’m glad, I think it will help.
The sun has ceratinly helped this weekend, and my son came home for the weekend, so it was wonderful to see him (although his girlfriend saw more of him than we did, of course!).
Hope you’ve all had a bit of sunshine or happiness over the weekend,
love Jacquie xx
Good news as everyone has said from Kate and Gill. Beli, good news for you too, but also the sound of the clots is not that good, but as the others have said least you got some treatment quickly.
We have been enjoying the weather too, taking the muppets out and about and tidying the garden up for winter. It is so nice to have some lovely weather, as I think it does have an affect on us, and makes us happier.
Jacquie sorry to hear you struggling at the mo - know how you feel, as I am there quite often, but doing OK right now. I hope that your psychologist helps you sort things out more. You will have to pass any tips on.
Well hope that everyone has had a fab weekend. Thanks for sending me the pictures Jacquie, looks like you had a great time and am sorry I missed it.
Hi Everyone
I have just been diagnosed as having secondary breat cancer in my bones and liver (original breast cancer 2000)
Starting weekly Taxel, and three weekly Pamidronate and Herceptain
Feeling very isolated and a bit “frozen” in this whole new world
Just wanted to join in a bit - no idea of what to expect -
I was feeling OK until diagnosis but have felt literallly sick and tired since - not sure if this is physical or emotional!
Juat wanted to say that I read some of your experiences and didn’t feel quite so alone …so thanks for that…Jayne x
Whilst you await replies from other forum members, you may find the BCC publications on secondary breast cancer helpful to read, they can be found at :-
Also, if you would like to talk through your fears and concerns please give our helpline a call. Here you can talk with a trained member of staff who can offer you a listening ear as well as support and information if needed. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I am going to write you a very quick reply for the moment as I am at work and have a few things to do before I go home. First - I am sorry you are here with us. I can well remember the shock even though I haad 4 years clear not seven, i was still utterly devastated and shocked as I felt reasonably well, it was only with hindsight I could see that there had been some clues. How did you find out ? For me it was a rise in the blood markers leading to scans.
There are a lot of marvellous women here on this site who are really well informed and supportive, we chat alot on the site and also have had some meetings in person that are helpful, There is always someone here who can answer a question about a treatment or just understand what it is like to be in our shoes. Do you have a partner and family supporting you ?
I hope the weekly taxol gos OK- I am about to start number 5 tomorrow, it reasonably OK, tiring but not too bad,dawn and Jacquie are on herceptin and they have had really good results with it to date. It sounds like your Onc is on the ball as they have put you straight on bone strengtheners. Anyway sending you a cyber hug for moment-
Dear Cathy
Thank you so much for replying! Wasn’t quite sure I had got the hang of sending a message! but lovely to get a response
I found a lumpy hard area on my collar bone which turned out to be a lymph gland with breast cancer and I thought it was an injury due to cutting mosaic tiles so I had gone to an osteopath! My daughter is with me - she’s being really strong - probably too strong
I hope your taxol goes Ok tomorrow - you sound really busy still being at work this evening - how many do you have to have? Is it weekly or every 3 weeks - not sure why I’m on weekly…I think I have a lot of catching up to do with getting to know about all these treatments…so thanks again - let me know how you are doing …Jayne x
Back again! Its weekly taxol - alot of people are having this now …weekly is a pain, but apparently its better tolerated than three weekly, I think thats true. I manage to work, but only because I can manage my hours as I see fit,its very tiring the whole business but really not that bad, its not liked the three weekly where you are really knocked for 6.
Jane - Sorry that you’ve joined this club but as Cathy said we are very supportive and people will try to answer any question you ask.
It is such a shock when secondaries are diagnosed and I’m not surprised you feel ‘f
rozen’.
I now have weekly taxol (due number 10 this week) and it is working really well even though they have cut the dose down from the original. I have secondaries in my bones, liver and lungs and skin mets again and a lump under my armpit but opposite to affected side. I also have zaledronic acid/zometa monthly and herceptin 3 weekly and have done since sept 06. I’ve not had any problems apart from my hair falling out due to the taxol. My oncologist feels herceptin and a chemo work really well together so hopefully it will do the same for you and sorts out your
My liver caused me to feel sick so once I’d had a few doses of taxol, that improved as well as hopefully the taxol will suit you and will work well for you.
Keep in touch and remember there is live secondary chat ona tuesday evening although I won’t be there tonight but om second thoughts it might be best to wait a week or so till you have come to terms with your diagnosis as sometimes we can talk about tough subjects but usually manage a bit of fun as well and you get the instant reply. There is a nurse facilitator there so often she can answer the ‘nedical’ type of question.
hope all goes well and maybe see you in the chat room later on.
Woke up and couldn’t get back to sleep so thought I’d come own quickly to use the computer and have just realised I’ve been asleep on and off for the last hour whilst typing this so please excuse any typos etc. Will edit it tomorrow if it doesn’t make sense!!
All the best, jayne
Kate
Kate and cathy
Thank you so much for your replies - I really appreciate them… and to hear how you are doing on the treatments…you both sound so strong…and fiesty! I will do a bit more reading on the site today - although supposed to be working from home this week - finding it a bit difficult to concentrate at times…but I’ll make the time up
Hope you have a good day today…Jayne
Just wanted to welcome you - hope you find lots of support here and feel less isolated. I had weekly taxol last year for liver mets (and am now on xeloda which is working well). Managed with the taxol not too badly (though the last month or so was quite hard going) - worked throughout and did quite a lot of other (fun) things as well!
Not surprised you are finding it hard to concentrate on work at the moment though - it takes time to get your head aroun all this stuff and even then, there are good days and bad days. If you need time off, then do take it (rather than worrying about making the time up). I find it very hard to get the right balance between work and home but I do know it is what I need to do!
And talking about that - what are you doing working at that time, Cathy?!! As bad as me - I spent yesterday evening writing a presentation for a meeting today!! Not good.
It’s difficult to say welcome because you don’t want to be here. However we’ve all been through that frozen incredulous place and all I can say is that it passes. We all have bad times but we support one another really well. When I was diagnosed (lungs and liver) I was all set to turn up my toes but the treatments have worked well and though the prognosis is pretty much the same I am enjoying life, working full time and generally getting on with things.
I know what you mean about your daughter being too strong though - I have 3 grown up kids and it breaks my heart to see them being strong for me. On the positive side , although no-one says it out loud, they are making a lot of time for visits. holidays together and generally being together.
Hi Jayne, and welcome to the forums, but i’m sorry you need to be here.
I was diagnosed last year and had taxol with herceptin (some weekly, some 3-weekly) to good effect. Now I’m on herceptin and tamoxifen and keeping stable so far. As you can see we’re a friendly bunch, and it is so heartening to read of other people thinking the same thoughts and having the same worries as you. There’s loads of accumulated wisdom and experience too, so you will get an answer to almost anything.
I hope you are being well supported by your daughter and the people around you - shock is such a strange thing, and you fel you’re not able to function properly. It will pass after a time.
Good luck with your treatment
Love Jacquie x
Really sorry you have had to join us here, but welcome anyway.
I too was dx last July with bc and liver mets at the same time, had 3 x FEC and 3 x Taxotere and am now solely on Herceptin at present. Things are stable too at the moment.
The shock of being told that we have cancer is catastrophic, well was in my case, took my 3 weeks to start to live my life again and try to get my head around it. Once my treatment had started I did start to live again, carry on with normal life etc, but I still have good and bad days, as does everyone. I hope that you manage to sort yourself out a little and start to get some kind of normality back into your life. It takes time, but u do learn to live with the prognosis of mets.
Take care and let u know how u go with your treatment.
Sending lots of love
Dawn
xxx
Hi Jayne
I have mets in lungs liver and "spots " in bones. I’m really sorry you have to join us but as everyone else has said the support is wonderful and really gives me encouragement especially at times when things are not good. Let us know how you get on
Best Wishes Kathryn
to Cathy, Katherine.Kate.Kay Manon,Jacquie,Dawn and Kathryn
Wow! thank you all for your welcome…and your time and lovely replies…now although its a club I didn’t want to join…I can’t complain about the warmth of its members! Have taken on board what you say - especially about the shock bit and being able to live with it in time …in fact went to see a friend for lunch today and I told her - she reacted really well and we had a lovely glass of wine - made me feel as if I had stepped outside my little world…so thats a good start.
If I can tap into your “pool of knowledge” I have a couple of questions…firstly I was told my tumour markers were around 153 and a normal reading was between one and five - when I asked the oncologist she said not to pay much attention to them…just how significant are they and should I ask a bit more? and … I asked about how many / how big were the bits of cancer in my liver and they were very vague - they said there were several but it was hard to guage what was cancer / inflamation - should I probe a bit more on this … are they keeping something from me since I have read others on this site talk quite specifically about size…??? I know my treatment has only just started so maybe these questions are for assessing whats happening - still if anyone thinks I should be asking more questions please let me know - I was very dieect about prognosis and they said on average ( If I respond to treatment ) average would be 18 months - 2 years - worse if I didn’t respond and could be better - so I was being very direct myself… well Hope you have all had a good day today … and a big thank you , Jayne x
Glad to hear you had a good lunch today - and a glass of wine always helps as well.
There are a number of tumour markers measured though (I think) the usual one is CA15-3. I’m wondering whether they have tested a different one for you though because the normal range for CA 15-3 is below 26. Mine have been up to over 400 and there are others whose tumour markers have been higher. Mine have always been quite a good guide to what is happening but that isn’t true of all people and as a result oncs tend to have mixed views about them. Some oncs don’t loo at them at all and those that do look at trends rather than one result in isolation - ie whether they are going up or down over a period of time.
I have multiple tumours in my liver and in fact have never dared ask how many (and indeed now they don’t show up on scan so not sure what counts!). Have worried that they would tell me there were too many to count! I think when it is just a couple they tend to tell you (and in theory at least there may be other treatment options such as surgery or ablation). When you have your next scan, there should be a report comparing that to your last scan - again more important in many ways what is happening rather than the actual size and number I think.
The 18m-2years seems to be the standard prognosis given but there is a huge variation, the stats are always several years behind and there has been a lot of progress in the last 5 years in terms of drugs etc. I tend to picture it as a bell graph and (on my better days) imagine myself on the right hand side, with a much longer life expectancy. I know the odds are against me but some people are there, so why not me?? The drug I am on (xeloda) can work for some people for several years, for instance. Nobody can really tell how long any particular drug will work for you.
Sorry - longer post than I intended. Hope it helps.
Sorry to hear you have joined our club the support here is brilliant.
I was dx with secondaries in liver and bones in May 2006 I have been on Xeloda since then and my tumour markers have come down although they are changing slightly at the moment my last reading was 34 and hospital said it was ok. My Onc has always said mutliple tumours on my liver and would never give a direct number maybe she thinks I don’t need to know.
We all have good and bad days and its only natural but once you get your head round this hopefully you will be able to have some more positive days.