Hi All,
Yes, it’s a combination of a poorly planned ‘system’ for chemo, and then masses of human error and general couldn’t-care-less attitude on the particular ward I’ve been on. My onc has asked for a case meeting with the managers as he’s so outraged, which is great - to feel someone is on my side!
We talked at length about needle ablation or surgery, as i’m nearly at the end of my chemo. He said the problem is there is no evidence either way, that it is better to do these things or to leave it. He acknowledged that it is a natural instinct, and seems logical, to want to get out every last bit of liver tumour, especially if there’s no evidence of any tumours elsewhere. But he said in fact there’s no evidence that the final outcome is any better. He said if he refers me to a surgeon they’ll probably agree to do something, as that’s what they like doing (surgery!). And he could refer me to a needle ablation person who would probably be willing to have a try, as that’s their area of special interest, but he couldn’t honestly say it would increase my chances of survival. I brought up the fact that the chances are there are other ‘seeds’ in other parts of my body, which will start to grow one day, and he said yes, that’s the view really, that it’s very likely.
So, nothing definite to pin things on there. He’s left it up to us to think about it. He won’t pursue it unless we come back and say we want him to, in which case he’ll refer me. It probably depends a bit on the final scan after chemo, too.
I hope this hasn’t disappointed anyone too much. Please let us know what your oncs say when you discuss it, as there’s bound to be a range of medical opinion.
Love to you all
Jacquie xx
Hi all
I think this is much my onc’s view as well, Jacquie - he certainly isn’t as keen on the surgery as the surgeon is! But then that’s hardly surprising. I know the liver surgeon I have spoken to will only do the operation though if it is a single secondary and he also likes to do it in combination with chemo. So the scans are all important really.
The statistics I think are also quite confusing. My understanding of it all though is that if you drew a graph of how long people survived after diagnosis of a liver secondary, there would obviously be a peak (don’t know how many years and not sure I want to) and that this would be not be very different whether you have had surgery or not. However as the graph comes down again on the right side showing the number of people surviving longer, there may well be some difference between the two in that there are some surviving longer with the surgery than without. Sorry - would be good to draw the graph but can’t do that, so hope you can draw it in your heads!!
For me, I do remain convinced that the liver resection is my best chance of surviving longer term even though I accept there are probably many other ‘seeds’ (as you put it Jacquie) waiting to grow and that the surgery may indeed not make any difference at all. I just feel I’ve got to give it a go if it’s offered. I’ve probably also been swayed by the liver surgeon who I really liked - he also didn’t portray the resection as a cure by any means but was very honest about what it might or might not offer.
It’s so hard isn’t it? We all want to believe there is some hope but don’t want to be given false hope. Will keep you all updated as I find out more over the next few weeks (assuming my scans are ok when I get the results!).
Lots of love Kay x
PS Wisdens - are you ok? Not heard from you for a while. Hope you haven’t hit any more problems.
Hi everyone.
This is the second timeI have typed this and I don’t know what happened to the first one (lost in space!)
Thankyou very much for your support. I am feeling much better this week and i’m more focused. i see my oncologist on friday so we will see what she has to say. I am very interested in the liver surgery but I think I have multiple deposits in the liver so not sure if i am a candidate but I will ask and see.
Having my hair cut short in atisipation of requiring more chemo. Used the cold cap with great effect last time but not sure if i’ll cope this time. will have to did my wig out of the attic!!
Family and friends have been great. not sure how my husband is coping. He was very strong last time throughout my surgery and treatment but then fell completeley apart about a year later.
Maddison xx
Hi all,
Hope everyone is doing well. Got back from Amsterdam safely but very tired today. Great fun going through security at the airport, they weren’t bothered that I had 150ml of chemo attached to my arm but did felt my head to check I didn’t have anything under my bandana! Didn’t realize my head was such a funny shape!
You girls have a long time when having chemo. I am usually on the unit for about 2-4 hours, having bloods, see onc/nurse then wait around for chemo to be ordered. The chemo itself takes about 15 mins as only having small dose of Epi and reattached to pump for 5FU.
Maddison, I have had multiple deposits in my liver and was told not suitable for resection or ablation. Do you know what chemo you are having yet?
Not much else going on business is brisk, had an order for 1200 chocolate truffles for next week! My girls are going to be busy!
Allie
Hi, I just joined yesterday to make a comment on another thread. Originally dx 1966, 6+ years NED, dx metastatic end 2002. Mets now in stomach, liver, pancreas, pelvis, skin, bone, on my 4th lot of chemo (vinorelbine). I’ve just chimed in here to say that I have had two radio-frequency ablations of a liver met - the same one, it was close up under my diaphragm/heart so he wasn’t (he said!) bold enough the first time around. At the time it was the single large met, so it was probably worth doing. Anyhow, the point I wanted to make is that it wasn’t, for me, too much of a big deal; both times, I was only an inpatient one night after the procedure and I flew back to Scotland (where I live) from London next day the first time.
Given the sort of evidence you’ve been talking about above (ie no strong evidence for improved survival), I’m not sure I would have gone with surgery which is likely to take longer to recover from. But the RFA (for me) was not so bad. I didn’t really even get any pain except immediately when I came round from the general anaesthetic, and that was soon dealt with by morphine.
Hi All,
Kay, yes, i perfectly understood your bell diagram description, but why do you think more people on the right hand end do better? What have you heard?
Thanks potentilla, it’s good to hear the RFA isn’t too bad, if we do go for that.
Allie - made me laugh about the airport. What’s this about chocolate truffles? Sounds like my dream job, to be surrounded by 1200 choc truffles all day! Is it your own business?
Strength and health to you all
love Jacquie x
Hi all
Glad you understood the graph shape Jacquie (wish I’d thought to describe it as a bell!) - I think I’m a really visual person and so desperately wanted to draw it and wasn’t sure how to describe it!! I haven’t hard evidence to support that people can do better if they have the op rather than not but based it really on what the liver surgeon said to me (and of course surgeons do like surgery!) and some research on the net. The surgeon has some (probably not many out of all those he’s operated on) who have done very well. So he was for instance able to tell me of a lady who was still cancer-free 10 years after the liver resection. I’ve also seen an American study that gives a figure of 31% disease-free 5 years after resection - think liver resection is more commonly offered in the US. The website giving this info is annalssurgicaloncology.org/cgi/content/full/11/9/869 but be warned that it is full of statistics (some positive/some more depressing) - I know some people prefer not to look at such things.
My feeling (and clearly it has to be a personal decision for each of us) is that if I am offered the operation, I will go ahead because, however small that chance that I can similarly be cancer-free for a long time and be way down on the right hand side of the graph, at least it offers me that chance. I’m intending though to ask far more questions (assuming my scan shows that the op is an option) when I see the liver surgeon and am happy to let you know what he says.
Good to hear from you Potentilla and to learn that liver ablation is relatively straightforward. Hope you don’t mind me asking but what were the benefits of having it done? DId it shrink the met or get rid of it altogether? Or was it done to improve liver function?
You made me laugh too Allie about the airport - this image of your head being frisked!! And like Jacquie, I’m puzzled (but also envious) by these 1200 chocolate truffles - what a great job! Or does it put you off chocolate altogether? - what a thought!
Maddison - glad you are feeling a little better. I treated myself to a new wig this time round because when I dug mine out of the back of the cupboard where it had been living, it looked really more like a dead rat! ANd yes, I do know I could have probably washed and reset it etc - I just felt I deserved a new one and needed only the smallest excuse!
WIsdens - still worried that we haven’t heard from you recently. Really hope that you are ok and just having a break from all this for a while.
Lots of love Kay
I think I am emotionally scared after having my head frisked, thankfully most of the other passengers on my plane were stoned Scousers so don’t think they took much notice!! Yes its my own businees, thankfully I have wonderful staff who have helped me whilst I’ve been poorly. Been taking a back seat up until now but now have to get out and about to fairs etc during the busy season. I’m afraid we only have to make 800 truffles now as the customer changed their minds, but working with chocolate doesn’t put me off it at all, I still love it.
Hope everyone is keeping well, at the mo I’m just tired all the time…
Take care
Allie
Kay, if it’s done right and they can get all of it, it basically kills the met by burning it. You can’t see the effects on a CT until some time afterwards, because the ‘dead’ met (necrotic tissue, basicaly burn scar) looks the same on a scan as a met; in fact, immediately after the procedure it will look larger, because they take a margin around the edge. I think that sometimes, but not always, you can see the scar get smaller on CT over time.
I had it because at the time I had a single liver met visible on CT (about 4cm, IIRC), so it was a good thing to stop it growing because it had a head start on any other microscopic liver mets (which as it turned out, I had). The only problems I have had with liver function to date were to do with a blockage of my bilary tree (first by a pancreatic met and then by a non-patent stent), not to do with the liver disease per se. It seems plausible that if I hadn’t had the RFA, that big met would have grown further and now be encroaching on my liver function (which right now is fine).
Thanks for that info, Kay and Potentilla. I’ll have a look at the website when I’m feeling strong. Been a bit weepy-for-no-particular-reason today, so don’t want to open the floodgates again now the kids are home!
Allie, do you ever go to fairs at Hatfield House? They have lots of wonderful foodie stands. I would look out for you if so…
Have a great weekend everyone - hope you have some nice plans.
Love Jacquie
Hi everyone
Seen my oncologist today who was very upbeat and said because my blood picture is good and I feel well that there are lots of drugs we can try. So we are starting with Paclitaxel (Taxol) weekly for 18 weeks. She said smaller dose weekly has less side effects than larger dose 3 weekly but same effect on cancer. asked about trials but said non at moment suitable for me and that I havn’t yet sctatched the surface of the drugs they can use. Can’t wear cold cap as infusion only takes 45 minutes. Pleased in a way that that decsion has been made for me as wasn’t looking forward to trying it again.
I asked about liver resection and ablation but was told it id generally for livers with 4 to 5 deposits where mine has more but very small but she didn’t dismiss it all together.
Feel more focused now that I know what is going to happen.
Alli sounds like fun at the airport. Did you manage to get insurance for your trip to cover your chemo? As for the truffles they sound wonderfull. I have been on a dairy free diet (i’ll try anything) for 2 years so havn’t had any chocolate for ages.
Maddison xxxx
Hi Maddison,
I have been having Epi & 5FU little & often and it does lessen the side effects you get with 3 weekly doses, I’m sure you’ll be fine. I think they used the smaller doses with me as my LFTs were up the spout when I started chemo, I was also a lovely shade of lemon! My hair fell out after week 4. After 6 weeks the Ct scan showed that the liver mets had been nuked.
I’m afraid I travelled without insurance, naughty me!! I have the European Medical Card, which would get me a certain amount of treatment and I was only going to Amsterdam for two days so I took a chance.
Jacquie- No don’t go as far as Hatfield House, I am based in North Wales so usually don’t go too far, Builth Wells is the furthest I venture out to. We have some dairy free chocs, my mad OH is vegan so have to keep him happy, not truffles though as we use fresh cream in them unfortunately.
Well had a long day at a craft fair so am off to the pub for a well deserved glass of vino!
Have a good weekend
Allie
Hi all
Thanks Potentilla for the info re ablation - it sort of fits with my views of it being best to get rid of this largish (but single) met I have. Do you know why they opted for RFA rather than surgery? And (showing my ignorance here and too chemo-ed to try and work it out) what does IIRC stand for?
Maddison, I’ve had earlier today my 15th Taxol chemo (only 3 to go - hurray!). I’m having it in combination with Avastin rather than by itself but have found the weekly dose relatively tolerable - more problems recently particularly with my nails and with tiredness but initially it really didn’t affect me too badly at all. Have managed to get into work every Monday (except one) for 4-5 hours. So hopefully you will also find it not too bad. Also really glad to hear your onc has many more drugs up her sleeve - that gives me real hope too whatever happens about the liver resection option.
Sorry you’re feeling tearful today Jacquie. I often find I get more emotional at times when “the plan” isn’t particularly clear - just seems to add to all the uncertainty that I find so difficult to deal with. So give yourself some pampering is my advice and come back to the thinking about treatments when you’re feeling a bit better. Hopefully the sun will be shining this weekend and you can do something good with the children (I’ve forgotten how old they are??).
And talking of children, how did the birthday go Dawn? Hopefully all those 4 year olds didn’t tire you out too much.
Good luck with the truffle making and with the fairs etc, Allie. And an enjoyable weekend to everybody
Lots of love Kay x
Kay - RFA rather than surgery specifically because it is a less invasive procedure and easier to get over. At the time, I was a private patient at the Royal Marsden and so lucky enough to have the full range of London specialists that I could be referred to. I was almost symptom-free at the time, so my onc was really focussed treating me in a way which maintained my qualty of life as much as possible. RFA is a relatively new procedure, although getting more common, so it is not easily available everywhere.
IIRC = “if I recall correctly” - sorry, internet-speak!
I’ve had weekly Taxol too, and the side-effects were limited to tiredness and losing my hair.
Thanks for the info Potentilla - will ask about RFA rather than surgery once I get the scan results. And thanks also for IIRC - probably showing my age and lack of internet-speak experience!
Taxol definitely does seem to be easier to take in weekly doses doesn’t it (having seen some of the other postings about the 3 weekly cycle)? My major problem has been the nails which over the last few weeks have been detaching from the nail beds - quite sore & have had to cut them really short, so can’t pick up bits of paper etc anymore!!
Raining here so am having a quiet peaceful afternoon doing nothing!
Love to all Kay
Hi All,
I had weekly Taxol too, because of dodgy blood counts, and my hair started to grow back! I had the treatment on a Monday, felt OK until Thurs when felt quite washed out , took things a bit gently on Fri then was OK again. Other than that not too bad. For the last two months I’ve been back on a three-weekly cycle so the hair’s fallen out again. Feeling more tired as time goes on, and joints and bones ache, but that could be the bone marrow straining to make more cells after the neutrophil (G-CSF) injections. Only one more chemo to go.
I’ve been out shopping with my younger daughter (9) this morning. (The other two are 17 (boy) and 15(girl)). I think she’s going to be a fashion victim - begged me to buy her a particular kind of top to wear over leggings and even put her pocket money towards it when I said I’d only be prepared to spend a fiver. Now she’s walking around in layers of different clothes and a bakerboy hat. This never happened with the other two! Then we went to a family drumming workshop this afternoon. Busy busy.
Enjoy your quiet afternoon Kay,
love to all
Jacquie
Funny how different children can be, isn’t it Jacquie? Even when they are brought up in the same way. Family drumming workshop sounds great fun!
Interested your hair started to grow back during your weekly Taxol - have recently noticed mine has. Still very short and baby-soft but definitely growing. Was very surprised!
Hope everyone is enjoying their weekend.
Love K
Hi all,
My hair is also growing back on weekly Epi & continuous 5FU but its very fluffy. I have a very fashion conscious neice who is 15 and drags me around shops looking for the perfect outfit!! When she had braces fitted she had to have co-ordinating elastics on them!
Take care
Allie
Ha ha, now that’s a new one! I like to be co-ordinated but that’s ridiculous…
Jacquie
Thanks for all your positive comments about weekly Taxol. First one this afternoon. Hopefully I won’t be there too long. My blood count is fine but Oncologist still wanting to give it to me weekly. Anyway will see how it goes. Have stopped my arimidex as she said it obviously isn’t doing anything.
Not planning to go back to work though until it’s all finished. In the health profession so I don’t think I could cope with listening to other people’s worries and complaints (sometimes trivial) when I’ve got enough of my own. sounds a bit selfish when it’s written down.
Allie your dairy free choclates sound nice. the only one’s I’ve been able to find are very strong and I was always a fan of dairy not plain choclate. Are you having your chemo in continuous infusion?
Kay Why are you having Avastin?
May try and go on live chat tonight if feeling ok.
maddison