'Anomalies'

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After a routine scan showed (as the doctor in the MRI suite so charmingly put it) ‘anomalies’ in the liver, I’ve just finished a course of Taxol + Avastin. No-one (including myself) is of the opinion that they are anything other than cancerous.

I am disappointed, but not surprised. I knew I had a poor prognosis five-odd years ago when a second primary was diagnosed with node involvement and vascular invasion and this latest turn of events has always been on the cards. I did all my weeping and railing against Fate back in 2004.

What else can I say? I feel well, was and so far remain symptomless. Side effects from this regime have been minimal; vaguely fatigued, a fair bit of hair loss, nails a little sore, mildly aggravated lymphoedema. Other than that, nothing. I feel a bit of a fraud at the moment. I’ve continued working at the part-time job I’d secured the week of the scan.

I’ve always read the secondaries forum a lot, altho’ I’ve seldom posted unless it’s clear that posts from those without a secondary diagnosis would not be unwelcome.

I am also not very good at posting where I feel I can offer neither a practical suggestion nor an informed opinion. I read many posts and my heart aches and I still do not know what I could write that would be of help and so even tho’ I care deeply about what I read here, I write nothing, all the time aware that even a ineptly worded sympathetic line or two can be of comfort and would probably be better than nothing at all.

The posts have been, and are a source of reassurance and information for me; even more so now. I live in France and whilst my French is good enough to talk to the oncologists et al, this forum is frequently a valuable extra ‘check’ on what I think I’ve been told.

That’s about it for now. If any ‘mets vets’, especially with liver involvement, would like to reply, well, I’d love to read your comments, observations, suggestions, anything, really.

X to all

S

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Really pleased that taxol and avastin were not too debilitating I think if given early enough they can keep symptoms at bay for longer.
As you know I have liver and bones secs and have only really felt poorly this year mind you I have had secs for 5 years so it was going to make it presence felt at some point. Started vinerolbine 3 weeks ago feel abit more optimistic but just wish energy would return.
I have followed your posts on the other threads, just sorry you have had to join us on secs but welcome and I am sure we will ‘speak’ lots.
Love Debsxxx

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Bahons - so sorry to hear this news… I’m another primary person who reads the secondary threads alot knowing the chances are high i will be here someday but rarely posts… I hope that the treatment continues to work well and that you have many years of minimal symptoms…

Take care

Theresa x

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Hi Bahons

Your comments about reading posts/threads and not knowing what to write in response so saying nothing really resonated with me! I quite often cannot think of anything helpful/insightful/funny to say but would dearly love to. Oh well.

So sorry about your news and long may you be symptomless.

Best wishes.
Alison

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Bahrons - I am so upset for you. I feel like I know you, having shared so many of our thoughts on here and so this feels very personal. I am really, really sad. Sending you much love and hoping that you stay symptomless and well for a very, very long time.

Love
Janex

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Hi Bahons,

I am upset to hear your news and i just felt i had to say something. You are so helpful to all of us lymphoedema sufferers on here when you have problems of your own.

I hope your treatment is successful in keeping the cancer at bay for a long time.

All the best

Linda

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Hi Bahons

I too seldom write if I feel I have nothing to add, but on this occasion just wanted you to know I am thinking of you. I have been aware from your profile that you are having other treatment. I too read the messages from those with secondaries and feel deeply for each and every one knowing that I also will probably join them eventually. Thank you for all the help and support you have given to us all.
Starfish x

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Oh Bahons I am so so sorry to read this. It’s a sh** disease, am not a liver mets person so cannot help I am afraid, but I am sending you a virtual hug.

I hope you remain symptomles for as long as possible.

Nikki

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Hey Bahons,

I haven’t been on the site much lately, but I just saw your post & wanted to wish you well. I’m sorry to hear your news and that you’ve had to spend your summer doing chemo, but glad to hear that you have got through it now.

I’ve said this before, but you have been such a great help to me and others on this site. I always read your posts because they are so well informed and I do like your sense of humour.

I hope that you continue to feel well for a long time to come…

Lomalinda xxxx

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Hi S
So sorry to welcome you to the group none of us wanted to join, but glad to hear the taxol/avastin hasn’t been too onerous for you, and hope your next scans show they’ve worked well. I’ve been living with liver (and bone) mets for almost six years – never had any liver symptoms/pain, and my liver function tests & other bloods have always been “normal”. Guess that shows how (un)reliable those tests can be for some of us. So far, a combination of (low-dose) Xeloda, Aromasin & Bondronat is keeping me relatively stable.

Like others posting here, I’m hugely indebted to you, in your role as “Lymphoedema Queen”, for all the information & support you’ve given me and others on these boards – please let us reciprocate with you, as and when you need us.
Marilyn x

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Hi Bahons

Sorry to hear your news. I like you have liver mets - dx over 2yrs ago- and like you too felt (hugely!) disappointed but not altogether surprised when I got that dx (had had 5 years since my primary dx). The biggest shock has always been that primary dx. But then I was always very aware that developing secondaries was a very real possibility.

I have been lucky and never really had any symptoms from the cancer (just side effects from the various treatments) and have nearly always looked pretty well too. I’ve also worked throughout (sometimes on reduced hours) except for 6 weeks after an attempted liver resection and recently after SIRT.

I also frequently feel a fraud despite knowing that I am actually very seriously ill - even had the “6 month conversation” with my consultant when chemo failed in April/May - and will die at a much much younger age than I should. But I do feel well(ish) and can still lead a pretty normal life, albeit interspersed with rather too many hospital appointments. The difficult thing is knowing/acknowledging that that might change tomorrow as (over my time on the forum) I have seen happen to so many women. For me it is important to have hope but not false hope - it has to be well founded in reality, if that makes sense.

Not sure whether any of my ramblings are any help, Bahons. Do feel free to ask any questions if you have them - or pm me if you prefer.

Thinking of you Kay xx

PS Fingers crossed for the vinorelbine, Debs - and the return of some energy!

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Oh Bahons I’m really sorry to read your news…this is a very supportive place…I’m so sorry you are here but you will find all the friendship and support you need at this difficult time…Take Care…x.x.x

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Hi Bahons

I would say welcome but that would be the wrong word to use - sorry you’ve had to join us here, where no-one wants to be. Belinda is right, you’ll get loads and loads of help and support. I’m not a liver mets girl myself but just wanted to say hello.

I hope you stay asymptomatic for a very, very long time - I know exactly what Kay means, I feel a bit of a fraud most of the time too as I am pretty much pain free 99% of the time (bone mets) but I also know that could change at any time. Luckily everything is well under control for me at the moment, so really hope this will apply to you too - sounds as though you’ve coped really well with the Taxol/Avastin combo.

Lesley xx

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Bahons,
I could not read your post and not comment.I wish there was something I could say or do.I enjoy your posts and you are our resident Lymphoedema expert!
I am sending hugs and best wishes.
Love
Dot
x

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Bahons, I think Marilyn has got it so right in what she says. Sometimes I think there are those who bring something specific to forums where their experience and advice is invaluable. You have a well earned title of Lymphoedema Queen!! Then there are times when we need to sit back and draw on the help of others who have been in a particular situation before us. We are not all giving & receiving at the same time. I am really sorry to read that you have this dx to take on board now. It takes a fair bit to get your mind round it but I just feel so saddened each time I read of another one having to face secondaries.

Sending love and thoughts,

Dawn
xx

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Bahons, I’m so sorry to read about the latest turn of events. As for feeling speechless sometimes, I agree - I, too, frequent the secondary forums (suspecting that the chances that it will return/spread are high) and feel unqualified to comment - but I have always found your posts to be entirely appropriate as well as symathetic and understanding.

I hope that you remain symptomless for as long as possible and that the medics are able to manage any symptoms that might materialise.

Best wishes

Naz

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Oh Bahons, I am so sorry that this has happened to you. I have nothing insightful or sage to offer, just some cyber hugs and to join my wishes with those of others who hope that you remain symptom free for a long time, and that you get the support that you need through this new phase for you.
Hugs

Kinden
x

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Hi Bahons,
I had not realised that things had moved on for you and so this was quite a shock to read. As usual your grace and eloquence shine through in your post. However, I can’t help feeling this must be such a hard thing to come to terms with after fighting your way through so much treatment already. You deserve better. I am glad that you were able to have avastin and hope that this will prove effective for you. I would also like to say I am very sorry that I was not there to speak to you at an earlier point, as you helped me a great deal in our communications for the many months when we were travelling the chemo/ rads path together before.
Big hugs and thinking of you
Lily x x x x x x x x x

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Oh Bahons,

I am so sorry, words fail me, I just wish I had that magic wand!

I was diagnosed with lung mets and possible liver mets in March, I can only presume that my “possible liver mets” are what you have.
However I have had two scans since diagnosis and there is no change in my liver so they now think that they are cysts.

I pray that this is what yours are.

Take care, I am just off to the lymphodema clinic!

Love,
Janx

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hi bahons ,im also a liver secs girl ,have had spots on liver since diognosed in 2006 ,at the moment they are stable and havnt changed a great deal since my last chemo,i know the shock after being told the news of further spread ,and im so sorry its happend to you ,we have had some comunications on the lymphodemia threads .hope you continue to be stable ,i too feel ok bit tired all the time but relativly ok ,been 3 yrs now since diognosed so im really hoping mine stay ok for a while as yet ,wishing you strength for this latest battle .take carexxxxx