Treatment suggestions for primary liver cancer w lung mets

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hi guys,

I am 30 years old and have recurrent primary liver cancer with lung mets. Below is my medical history. I don't seem to be repsonding to my latest clinical trial chemo treatment. Anyone with any treatment suggestions (chemo / clinical trials / alternative) please advise.

BTW, I am in Malaysia (small southeast asian country) so hope you don't suggest doctors/hospitals but rather the treatment itself, thanks!

My cancer history:
- hepatitis B carrier from childhood
- single HCC tumor found in liver's left lobe in May 2004
- underwent resection at Stanford Hospital in June 2004
- recurrence detected in May 2005 - another tumor in liver AND several more in lungs
- underwent Avastin + Xeloda clinical trial in Singapore
- After cycle 2, CT shows tumor stopped growing although AFP is still climbing
- After cycle 4, CT shows tumors grown by 10% - but still considered as stable disease
- Still on the trial but not optimistic that I will respond, hence looking for other types of treatment

Regards,
seage

cjago · Regular Joined: 14 Jan 2006 Posts: 42

Hi seage

I just mentioned radiofrequency ablation to stones in a separate thread and then I saw your post. I didn't know if anyone is using RFA for lung tumours, so I've done some research and it looks like they are in the States. This is a pretty good site:-

http://www.geocities.com/rfacancer/

Not a cure, but buys you time, and is minimally invasive. Also can be repeated. I just had it done in London. Let me know if I can research it in the UK any more for you if it's not available in Malaysia yet. (I found an article from medics at the Singapore General Hospital).
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello cjago,

Thanks for the reply. Have been kinda disappointed that no one's posting on my discussion. Not that I think everyone's unfriendly but more of a, "don't say anything if you can't say anything nice" sort of thing... 8p

Yes, I have done my research on the RFA option and even better, there is a radiologist in Malaysia who was confident of performing it on me (this was a while back and my tumors have grown* since so I'm not sure if he can still do the procedure).

While most Malaysian and Singaporean doctors has a "at this point in time, no one really knows the best solution so why don't you decide, chemo or RFA, up to you" sort of attitude, an oncologist here in Singapore was dead against RFA because:
a) she is not confident that the radiologist can zap all the tumors in my lungs (some of them, she thinks are inaccessible and will risk puncturing the lungs)
b) she firmly thinks that by zapping the tumors, i'm merely "treating the scan results and not treating the disease". she is convinced more tumors are emerging
c) RFA requires the burning of a margin of healthy liver/lung tissue that in my situation is a very valuable resource. the liver especially since it would be responsible to handle any future chemo drugs

She basically yelled and pleaded for me not to go for RFA and to go on a clinical trial (of Avastin+Xeloda). And get this, she is not benefiting a bit from this because she is not treating me (the trial is in the state hospital) and she doesn't charge me when i go consult her (and she does have lots of patients). Among all the doctors I've seen, she is among the 2 I place a lot of trust in (but I am aware that she, being human, can still be wrong even though she is sincere to help me).

So in the end, after considering various factors, I've decided to give the clinical trial a shot and as in my first post, I don't seem to be responding. I have 2 more cycles to go and if it's really confirmed that it's not working, I really don't know what to do next, try another chemo cocktail or attempt an RFA before the tumors grow larger?

More suggestions/advice anyone???

Meanwhile, cjago, which part of your body did you do your RFA? Lungs or liver? And gawd, ten years already? That's quite an inspiration for me considering that my prognosis from my previous oncologist was 6 months (although that was 8 months ago). So are you on any special diets? Any alternative therapy, that sort of thing?

*And my, they all grow up so fast, don't they? 8D

cjago · Regular Joined: 14 Jan 2006 Posts: 42

Hi seage

I only found these forums last week - but I notice that I am already reading posts and not answering unless I can think of anything possibly helpful to say (I mean, more helpful than "good luck") - I guess others are the same.

I'm really sorry to disappoint you, but I have primary breast cancer, not liver cancer, but with mets to liver and stomach (etc), so the fact I've survived 10 years is a bit less encouraging for you than it might be.

I understand the Singapore oncologist's reasons (a) and (c), but not (b). For anyone like you and me with mets already, there is basically no chance of a cure. What we after is ways to slow down the disease, both further growth of old mets which are large enough to cause symptoms, and the appearance of new mets. RFA won't do anything about the latter (except I supose reducing the number of sources of disease), but it can definitely help the former. Sure, it's a "buying time" option - but then, that's what both of us need.

On (c), it's true that this is the way they do it, but not sure why to be honest, for patients with mets already. For us, there are already plenty of sources of new disease. Having a large symptomatic tumour replaced by necrotic tissue (which will likely gradually get cleared up and maybe regenerate) plus maybe a small bit of residual tumour seems to me like (possibly) a baby step in the right direction.

And if they can't safely go for all of it, might it still not be worth zapping the biggest bits? After all, you probably already have microscopic mets all over the shop anyhow, so zapping all the visible stuff is not going to make you disease-free.

The other thing to take into account is the side-effects. Last time I had chemo, it knocked me sideways - in fact, I gave it up halfway through because it was not having any measurable effect on the scans and it was making me fell so bad that I had no quality of life (it was mostly the Xeloda, I think). The RFA, on the other hand, gave me little problem - I took no pain relief at all, even paracetemol, apart from one initial shot of pethidine, and I had about a week of feeling a bit pathetic because of being under anaesthetic for (I think) about 2 hours. It was RFA to the liver for a tumour which was about 2cm (ie not that big); they had to go in twice at different angles.

Why is RFA or chemo an either/or choice?

I'm not menaing to proselytize for RFA - there may be perfectly good medical answers to all the points above - but at least maybe the questions are useful to your thinking. I suppose what I'm saying is, nothing will cure you, including chemo. Your aim must be to keep hitting existing tumours (a) to reduce the sources of new disease (b) to give your liver as much chance as possible to regenerate bits of itself and (c) to remove any tumours big enough to be symptomatic (painful, whatever). RFA could help with this.

I don't do alternative medicine unless either there is some scientific proof or it is something I don't think can be scientifically assessed. Which at the moment means nothing. The only thing I think may be contributing to my state outside conventional medicine (in my case hormone therapy because my cancer lives on oestrogen) is the fact that I have a very very unstressful life now; I'm retired (at 42) and I live in a beautiful peaceful place (whereas I used to have a very busy international job). I think if I had serious liver disease (which I don't yet) I would probably give up alcohol and also look for other things I could change in my lifestyle to reduce the burden on the liver I had left, without turning my remaining life into a complicated chase after a difficult diet.

(Do you have any chance of a liver transplant?)
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello cjago,

Thanks for the reply. Not sure if it's becoz of your posting but I'm getting more and more inclined towards RFA the past week. I am not sure if it can still be done (the tumors have grown since I last met with the oncologist a few months ago) but if it is possible, I will seriously consider it.

Will wait for the results of my next scan (due in 2 weeks) and decide by then.

Meanwhile, anyone with any advice are welcomed. Cool

(Nope, liver transplant won't help since the cancer has already metastasized. Don't think the subsequent immuno-suppresive drugs would be good for me either. A big risk for no benefit.)

- ch.

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

I'm sorry to hear about your serious situation. Unfortunately, your options are limited with liver cancer. Unless you are experiencing symptoms from the lung lesions or other sites, RFA would only be palliative. As you noted, there are risks and if won't change how you feel nor your overall survival, maybe of limited benefit. A more systemic approach could be of more benefit. Are there other clinical trials available? I noticed you had some treatment in the US. Also consider other Asian countries such as Japan which deal with a lot of liver cancer and have a decent medical system. As a last resort complementary and alternative medicines (CAM) exist but remember these should be treated like any other chemotherapy, ie they can have serious side effects. Some clinical trials involving may exist in China/HK but the medical system has variable quality.

RLee, MD
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

seage · Regular Joined: 19 Jan 2006 Posts: 20

Thanks for your advice RLee.

My rationale for trying RFA is this:
1) There are no clinical trials available in Singapore/Malaysia. Undergoing trials in other countries is not an option due to financial constraints.
2) Standard chemo are palliative too - with <20% response rates, mostly stable disease or partial response. Complete response are rare.
3) RFA is palliative too but at least it has a much higher success rate at shrinking tumours. It won't cure me but then, neither will chemo. By undergoing RFA, I have a very good chance in shrinking the tumours and buying some time - time to try chemo and clinical trials when available.

This is UNLESS there are higher risks with RFA such as:
a) RFA destroys a portion of healthy liver/lung tissue together with the tumours. At this point, I should conserve liver tissue (to withstand future chemo) and lung tissue
b) RFA actually ends up spreading the cancer cells

I will of course be seeking various medical opinions on this but feel free to comment if you disagree or have any additional comments.

Thanks!

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

I generally agree with you comments. Let me add a few more points about RFA. Its use is limited with tumors of a certain size, generally smaller lesions. In addition it is most useful with only a few lesions. If there are quite a few or large lesions, it's use is limited and will probably not provide increased survival. When a patient has significant discomfort/pain from a lesion, usually large, then RFA plays a palliative role. RFA to increase life is limited to when the cancer is small and few in number. Your medical team should be able to help you sort out these issues.

RLee, MD
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

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