Had my screening today before I start the Abiraterone trial. Stupidly I asked for the results of my ct and bone scans which were done earlier this week. First the good news. The two lymph nodes that had appeared on my last scan and that were taken to be evidence of progression while on Avastin have shrunk. The largest is down from 2.5 cm x 1.7cm to 2cm x 1cm. And that is without me being on any treatment apart from Zometa because it was thought the Avastin had failed!!! Explain that. There is no mention at all now of the original nodes that were picked up this time last year.
The bone scans show no new areas of disease and that all is stable - despite me feeling a bit more bony pain recently.
But, but, but… there are now signs of multiple lesions on my liver. Doesn’t say how many and none of the measurements are over 2cm. I think the biggest is 1.8cm. And there are enlarged nodes in my stomach. The scan report says “highly suspicious of metastatic disease” for the liver stuff. But because I had an unenhanced scan (ie without the contrast dye) they want to repeat the CT scan so that they have more information and can make a more informed diagnosis.
I hate that contrast dye. It makes me feel so sick. And frankly, I have reached a point where I want to say “don’t bother finding out any more. Just give me the drugs”. But I think they really do want to know what is going on so that they can accurately measure what happens to these lesions on Abirateron, so they are trying to book me in for another CT scan next Tuesday - the same day that I am supposed to start the trial.
The doctor says that this latest development will not exclude me from the trial. But I am significantly more nervous now about the trial knowing that there is no data at all to show whether Abiraterone will have any effect at all in women. Somehow I felt OK about it when it was “just” bones and nodes. I fear that these lesions have come on so fast (my last CT scan was only five weeks ago and there was no sign of them then) that the prospect of going onto a drug only to find it has no effect and then finding that I get ill really quickly is so frightening.
And I am so depressed tonight reading about Sixpen and others who are going through rough times…
Deirdre
AS an afterthought… has anybody here ever had suspicious lesions that turned out not to be liver involvement?
So sorry to hear this news and would just love to be able to give you a big hug (sending one through cyber space though). I just hate the way this disease can so suddenly turn around and “get” you just when you begin to dare hope that things might be going ok.
I am also not at all surprised that you are scared. However from what you have said, they will be monitoring you very very closely as part of the trial - after all if it wasn’t for this 2nd scan, this would still be unknown. And I am sure that they will switch you to some other treatment pdq if need be. Can’t remember I’m afraid which chemos you have had - taxotere and taxol & avastin?? There are, as I know you know, other options.
I too am very depressed tonight about SIxpen and you and others - not sure Christmas helps at all either. It seems to have a very false and shallow sense of cheer this year.
I will however continuing to hope - initially for your next CT to show that it is in fact not liver secondaries.
Take care - hope you have something fun/indulgent planned for over the weekend.
This really is a night for crap news isn’t it? Its hard to know what to make of your scans to be honest - how can nodes be shrinking , bones stable, but then suddenly you have multiple lesions on your liver? I am sorry to hear this and I can certainly understand why it unnerved you.
I think the one thing to keep in mind is that a trial has to offer you at least the optimum treatment available at the time - so you will be incredibly closely monitored and taken straight off the trial if they think there is a better option. You can confirm all this with your onc but I am pretty sure that it is the standard medical ethics, Personally I would jump at the opportunity to take part in a trial.
I really hope this doesnt turn out to be liver mets - i think it is still possible and that there are alot more errors on scans an interpretation of scans that is generally thought.
I am sorry to read you’re having such a difficult time at the moment. If you need some extra support or the chance to talk through your fears and concerns please give the BCC helpline a call, as our trained members of staff will be able to offer you a ‘listening ear’. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
Deirdre
Am stuck what to say. Was going to text you today to see how things were but think it best I didn’t judging by your news. Please feel free to text/ring me if I can be of help
Am shocked by your news about your liver - I’m so sorry. It was always the part of my body apart from the brain that I was so scared it would spread to so can imagine how you feel.
I’m so sorry that they want/need to rescan you with the dye. Although I’m fine with the contrast dye, I can understand why if it makes you that sick you don’t want it. What anti sickness things have they tried? Are there others you could try?
At least it doesn’t stop you going on the trial which is the thing I think you need to cling onto or is there another chemo you wish to try first? What ddoes your onc think is the best option for you?
What a horrible day newswise - am so shocked by sixpen as i used to chat to her a lot on secondary chat. (I tried to log in last night to live chat and it kept telling me the room was closed so was very upset as wanted to use live chat).
Deirdre - I can’t tell you good news about your Ct scan as my experiences of rapid liver secondaries is the same as yours.
As you probably remember in the summer, my liver was clear apart from the 2cm one that is tucked away and caused no problems for 2 years. Then I had a CT scan in June and the liver one was still under 2cm and still not in a place causing me problems but 3 weeks later I was yellow and a small tumour had grown through my common bile duct so I know how it feels to suddenly have something that wasn’t there a few weeks ago. I hope it turns out to be innocent and the stomach ones as well
I suppose as my cancer has spread so rapidly since sept 06, I have sort of got used to how aggressive my disease is as in that time I’ve never managed more than 6 - 12 weeks off chemo so my head is in a different place to most people which is why I feel so useless in helping you.
I’ve also had mixed CT scans which have shown that some tumours have shrunk and others have grown - I think that is why in other countries they biopsy the new secondaries to see if they have changed from hormonal to non-hormonal or herceptin neg to pos as that could be an explanation why the chemo has had an effect on some tumours and not others. We seem so backwards in this country but at least you are at the marsden so have a better chance of getting on trials etc. I’d also cling onto that new trials are starting all the time so hopefully that will buy time for you and others.
I think I may have crap news tomorrow to share - I can hardly move my left arm as my left shoulder blade is so painful and have so much pain across my ribs in my back that I can’t take a deep breath, I think my bony secondaries have really flared up and the pain is so bad I’m wondering if I have a fracture - sorry now hijacking your thread. Really hope I’ve still got that bed tomorrow which was booked last week - mum coming with me so have got support. Now - really hijacked your thread -sorry.
Deirdre - you’ve had so much to contend with in such a short space of time and you’re always there for us and especially for me. Really hope others can support you here and can give you better outcomes of ct results than my experience. It is just so scary how fast these secondaries can just turn - the unpredictability is so hard to live with and I think difficult for others to understand as it seems other types of cancers don’t do this sneaky quick progression thing as often as it feels with bc but you don’t know how your cancer will respond and this new drug may well be the one for you.
Thinking of you
Love Kate
Wish I was nearer to you.
Kate - you are always of help, and don’t worry about hijacking the thread. It is useful to hear others’ experiences. Yes, I remember your sudden yellow experience.
I am clinging to the trial thing - with the men in the prostate cancer study it seemed to start working very quickly - their PSA levels came down almost immediately. But they just don’t know about breast cancer and women. I do wish I could have started the trial sooner, but because I had had a few days of Femara they had to take me off it and then give me a four week wash out period.
I think I am so upset because I always remember my father (who died of pancreatic cancer) telling me that when cancer went to your liver you were done for. He was a nurse. But of course, it was many years ago and I know there are people with liver mets who have managed to plough on for years. But it is the unpredictability that is so horrible. I have had times when things just seemed to take a massive leap forward almost overnight and that is scary.
I thought my bone scan would show progression today too. Certainly I have been getting more bony pain. But it shows stable disease. So I guess I should be happy about that. The back of my calf still feels as if I have pulled a muscle but so far no sign of redness or tenderness. I have started wearing flight socks, though. So sexy.
Hoping you don’t have a fracture. Please do share your news tomorrow.
Deirdre,
sorry to hear of your latest scan results, all I can say is that my liver tumours have grown and shrunk for the past 41/2 years one has got as big as 7cm and there were several other clusters really big at the same time I really did think it would finish me off, I have been amazed at how strong my liver is and how it has coped. My liver function has only ever been poor once and that was Feb this year. I think it is like Kate says we all have fears of where we dont want to hear it has spread to.
I have only been on one trial and as it was not working they pulled the plug on it pretty quickly so I am sure you will be monitored really efficiently. Have you been taken off the avastin? Sorry if that is a silly question.
Take care.
Hi Debs, thanks for the response. Interesting how your tumours have grown and shrunk.
I was taken off avastin about five weeks ago when they spotted two new nodes that suggested progression. I took Femara for a few days before they decided I was a candidate for the Abiraterone trial. So I had to come off Femara too and have a wash out period of four weeks before I could start the Abiraterone. That wash out period ends next Tuesday when hopefully I take my first Abiraterone tablet.
It is so ironic, though, that the two new nodes seem to have shrunk over the last five weeks even though I haven’t had any treatment apart from a few days of Femara and my usual zometa. I do wonder whether I came off the Avastin too soon - maybe it would have held any liver spread off for longer. Maybe the enlarged nodes weren’t progression at all but they were raised because I have had a virus. Who knows? But the rules of the Avastin trial are that once there is evidence of progression you come off the trial. Plus the Marsden has recently started to collate the results of their Avastin trial and have found very disappointing results - my consultant told me that in a head to head between Taxotere on its own and Taxotere and Avastin combined, the combination only gave three more weeks progression free survival versus TAxotere on its own. So I think they may have decided, after my eight and a half months progression free on Avastin (the average, accodring to their research) it really had done all it was going to do for me.
I am trying to be philosphical about this possible spread. I have told myself that if the Abiraterone works against the nodes and bone stuff it will also work against the liver stuff. But I am still frightened.
Do you do anything to look after your liver? I know that diet, supplements aren’t going to cure me and I know also that I need to be careful about supplements on the Abiraterone trial (I think most of them are banned) but I am wondering whether I should be looking after my liver a bit more through better nutrition (my diet is pretty rubbish!).
my last bone scan also showed stable disease,but Ct scan showed tumours in liver and lungs had grown. They told me I had liver mets at the same time as I was told about my BC. When I asked my onc and the nurses what I was could do to help my liver cope they answered that the liver is an amazing organ. It can handle a lot. But if I really wanted to do something I should cut out alcohol, which is the worst or at least not have more than one glass a day (was thinking of starting to drink my wine from a vase, but think that wasn’t what they meant, lol) I should cut out fatty foods and don’t eat spicy foods. That’s about it. Also, they mentioned I should take notice of what makes me feel ill after eating it and try to cut that out. As nausea has not bothered me with any of the chemos that might be an indication that my liver doesn’t like it. Hope this helps you a bit,
I am sorry to hear about your suspect liver - and I really hope the hormonal trial is successful for you though I do understand it must be so difficult to try something unknown at this stage. My own experience of multiple liver mets is that I have had great QOL (yuk phrase) for nearly three and a half years now. I understand your fears, given that my brother in law and several others I have known died from liver cancer within a matter of weeks. However, I think this is more often the case with a primary cancer and unless the tumours are in particularly dangerous locations, they are as controllable as any other kind of mets. Mine have progressed rapidly after EC chemo, tamoxifen, taxol, femara… but have been stable on xeloda for two years. (This stability may not continue as my last scan showed a difference in appearance, though still the same size, so am hoping it is necrosis of cells and not progression.) Anyway, just wanted to add my experience of liver mets being liveable with. The only thing I do to look after my liver, is cut down on the wine - a few glasses at weekends only, and I take milk thistle on my week off medication - though I doubt you will be able to do this on the trial but it may be worth asking about if you are interested in supplements.
When I was first diagnosed, I wondered if my liver lesions may not be BC related as I had previously been scanned after having a cancerous appendix, to make sure that it had not spread to my liver. If this were the case, I was told they would be very slow growing and not need chemo for about 10 years. The fact that they responded to chemo for BC meant that the oncs went along with BC prognosis and did not biopsy them.
Sorry you have this new worry to contend with and wish you luck on the trial.
Hi Dierdre
So sorry to hear your news. I always dreaded the spread to the Liver and when I had something suspicious just over a year ago panicked and wanted PET scans etc. My scan in May did show a small tumuor on the liver which had increased on the September scan. I had ascites as well and just couldn’t believe how rapidly and aggressively it had spread. To be honest the scan report is still a bit of a blur. I have now had 6 taxol and 4 avastin and the markers are coming down and I do feel better so I am keeping my fingers and toes crossed!
I do hope that the trial gives you good results , at least you are in the best possible place at the Marsden. Thinking of you
Love Kathryn
Kindred S - don’t worry - I used to read all the threads on these forums all the way through. NOw I am much more of a pick and mix girl - so don’t worry that you didn’t spot the news.
Yes, I think they will pick up quickly if the drug is working. In the men, the PSAs (the thing they measure with prostate cancer) came down within a couple of weeks. I think they will use my tumour markers since these have now become more reliable for me. That is good news about the spots on your liver disappearing. Having seen a new lump grow and then shrink in the course of just a few weeks it really is baffling. There is a bit of me that hopes I have had some nasty viral thing that has caused all this. We can but hope!
I am getting my head around the possible liver stuff. If the drug works, it works. It doesn’t really matter where the cancer is, does it, as long as the drug shuts it up.
I have been on Xeloda for two and half years, secondaries to liver and bones, I must admit I don’t drink much just the occasional glass and try to keep to an organic diet but just my views I have never been given any advice from the hospital. I have heard fantastic things about the Marsden so you are obviously in the best place.