geoff
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Jeff
Thanks for your comments. Yes I see where you are coming from and I do agree that CC patients may ultimately benefit from drugs being developed for other cancer types. I get a bit frustrated sometimes that CC is generally neglected/ignored by cancer drug developers but I guess that’s the way market forces work. Sorry if my previous comments were a bit negative.
Geoff
Like everyone on this site I’m desperate for good news regarding new breakthroughs and trials. But I saw my UK oncologist last week, after his return from the ASCO conference, and he told me there was nothing new in relation to cholangiocarcinoma. And I must admit I can’t see anything after a brief look at Jeff’s link. Am I missing something ?
Geoff
Latest scan results (last week) continue to show stable disease which is really excellent news for me. Still undergoing the dendritic cell immunotherapy treatment in Duderstadt Germany however Dr Nesselhut wants me to have a short (8 week) break from the treatment because there is apparently a risk that patients bodies build up a resistance to the DCs.
I’m suffering from 2 complications at present:
(1) Since a few weeks now my abdomen has become swollen. UK oncologist who examines my scans etc says that it must be ascites but scan does not seem to show this. If it gets worse I will have it drained. This does worry me but on the other hand the scan shows stable disease (oncologist measures the size of enlarged lymph glands using a scaling device in the software, he did this whilst I was watching the screen and it seems to be true!). But I worry that ascites normally indicates progressive disease.
(2) A few months ago my haemaglobin level fell below 9 and I felt very lethargic. After investigations I’m getting EPO which I have to self-inject (subcutaneous) weekly. In fact they have to give me double dose and that keeps my haemaglobin above 10.
Does anyone else have experience of (1) or (2) ?
Geoff
ak
Sorry I can’t add much to what has already been said. What is his bilirubin level ? Mine went up to about 400 and I was advised that the surgery would be more of a risk at such a high level, fortunately after a few attempts with stents they were able to insert an external drain and the bilirubin level came down to about 40 in 3 weeks, at which point the surgery went ahead.
In any case I’m sure that being under Prof Lodge’s team at Leeds your uncle is in very good hands – Prof Lodge did my resection and I reckon he’s the best in the UK. Just be aware that this is very major surgery and there is a risk that your uncle might not survive it – the 10% figure you have been quoted. In fact this is the statistical non-survival rate, I suspect that patients who are in a weak state pre-op are more likely to be in this 10% group. So you are absolutely right to look for ways of stacking the odds in your uncle’s favour. I forced myself to walk every day (my family used to really push me into this), not sure how much that helped but I felt I was doing something positive. Maybe the herbal supplements recommended by others will help, it’s probably worth a try.
But like your uncle says – do I have a choice ? My own prognosis without surgery was 3 months, 6 if I was lucky (my tumour was quite advanced). I decided I had no choice and wqs willing to take the risk. That was 18 months ago and I enjoy every day of being alive with my family – that’s the prize for having a resection. But it’s a very personal decision, not to be taken lightly. I wish him well.
Geoff
Peter
Sorry to hear about your current problems. You have such a positive attitude that if anyone can get through these issues then you certainly will. Anyway, your survival and active life since surgery in 2003 is an inspiration to us all and we need you to continue showing us a CC success story !
I’d be interested to hear what symptoms are presented by the Portal Hypertension.
Also I note that you are adding organic meat to your diet – is this better than fish in terms of putting on weight ? The reason I ask is that I avoid meat (but eat lots of fish), and like you I seem unable to put on weight.
Best wishes
Geoff
Kate
Thanks for your good wishes. As far as I understand it hyperthermia involves applying deep heat to the area(s) of the body which contains the cancer in order to sensitise the cancer to subsequent treatment (the latter typically comprises radiation and/or chemotherapy but in my case it is immunotherapy). The aim is to make the subsequent treatment more effective. Hyperthermia is an experimental approach and its effectiveness is unproven.
There is a brief summary of hyperthermia here:
http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia
In Duderstadt they have a machine which uses (I think) some kind of radiofrequency energy tuned to the cancer – not really sure how this works but I guess I’ll find out more when I get the treatment in April. I believe their hyperthermia machine is manufacured by Oncotherm, there is some information here:
Regards
Geoff
Marion
Having been in Germany last week, I only just saw your post about your husband. I am terribly saddened to hear about your loss, you and your children have my deepest sympathy and are in my thoughts. This really is a viscious desease, it just tears families apart. My anger helps to give me the motivation to fight it however I can.
I have always appreciated your words of encouragement on this website – it means so much to me and I’m sure to other sufferers too. You have contributed so much to this forum.
With kindest regards
Geoff
Marion
Many thanks for your good wishes. I look forward to hearing about your visit to Germany, I’ll be very interested in the new insights which you will have gained at Dr Gorter’s clinic in Cologne.
Geoff
Back from Germany after my latest treatment. Dr Nesselhut believes that the DC therapy is responsible for holding my metastases stable and is very pleased with this level of success. Regarding possible residual benefits from the chemotherapy (terminated last August) he argues that these would have lasted maybe a few months only. Now he wants to increase the effectiveness of my DC treatment, in order to achieve shrinkage, by adding hyperthermia. This will start on my next session in April.
Geoff
Alison, Stacie and Peter,
Many thanks for your good wishes. Certainly my immune sytem does seem very strong at the moment, I didn’t even catch the influenza which has been hitting a lot of people here in UK, even after my wife had it.
Peter, you raise a very good point regarding weight. I went from my usual 82kg (before I was diagnosed with cancer) down to 67kg (after surgery) then I was putting weight back on and went to 74kg before switching diet. Now I’m around 70kg ie about 12kg (equals 26lbs) below my pre-cancer weight. Although I eat quite well I just cannot seem to put weight back on – let’s face it this type of diet is ideal for slimmers ! I do eat lots of fish for protein (and for Omega-3) but I’m still very skinny. Thinking of taking some nutritional advice about this but I wouldn’t want to compromise the anti-cancer benefits of my regime. In what way did you modify your diet ?
By the way I’m not on a macrobiotic diet as such. I’ve developed a diet which I find appetising. I eat no meat, no dairy products, no sugar, and no added salt. I eat brown rice, wholegrain pasta, wholemeal bread, vegetables, oily fish and fruit for desert and snacks (of course the fruit has sugar but I can’t do anything about that). I do enjoy meso soup with seaweed and shitake mushrooms etc. All strictly organic. The diet is socially very restrictive – we can’t eat in restaurants and when I’m in Duderstadt we have to buy organic produce from the local health shop and give this to the hotel kitchen to cook for me (they’ve got used to this quirky english guy !).
Geoff
Just to let you know that I had my latest scan results this week and my secondary tumours are still stable. Shrinkage would have been great but stable is fine.
My UK oncologist doesn’t know why they are stable, he says that occasionally he does see this but (he cautions) eventually growth would be expected to re-start. He’s seen unexplained stability lasting for years.
He accepts that my immunotherapy treatment in Germany may be responsible but says (quite rightly) that it’s not proven. He does not attach much credibility to my diet and supplement regime (which I commenced last August after my chemotherapy was terminated).
I shall be discussing the scan results with Dr Nesselhut in Duderstadt next week. I imagine that I will continue with the immunotherapy. Something is responsible for holding my tumours stable and it may well be the immunotherapy. The only way I could be sure would be to stop the immunotherapy and see what happens but I don’t have the courage to conduct such an experiment on myself.
In the meantime everyone who sees me nowadays says how well I’m looking – I’ve completely lost that pale cancer look. And it’s really great not having to face the side effects of chemotherapy.
Geoff
Mary
You mentioned that your husband’s alkaline phophatase (ALP) levels were high and that you are treating this with milk thistle. My own ALP is 173 u/L (don’t knoiw whether these european units make any sense compared with US measurements) which on my blood results is labelled as high but my doctor says it’s nothing to worry about. I’d appreciate your comments on the implications of high ALP.
Geoff
That’s excellent news, I’m so happy for you. I also had the Gem-Carbo combination and it did seem to be working for me (slight shrinkage of about 10% which in fact counts as “stable”) but after just 3 months they had to suspend the chemotherapy due me not tolerating it very well – what happened was that my platelets fell to a dangerously low level and didn’t recover very much after the chemo was stopped. Seems like some people tolerate chemo better than others, but obviously it’s quite an effective combo.
Hoping that your next MRI is good, best of luck
Geoff
I came accross “The DCA Site” which includes a chat room dedicated to DCA, you may be interested:
http://www.thedcasite.com/index.html
By the way it seems like the Alberta team is going straight into stage 3 clinical trials (I guess the previous useage of this drug for metabolic disorders means that Stages 1 and 2 aren’t necessary).
Geoff
Sara
Many thanks for bringing this to our attention. It looks like a very promising development. It’s interesting that there have been a couple of other potential “silver bullet” therapies hitting the news in the past 2 months (I’m thinking of the P53 gene therapy in China and the genetically modified virus therapy in Oxford UK). And there is DC immunotherapy (which is still experimental but which I’m currently having). I get the feeling that in a few years time there really will be that silver bullet, the only question is whether existing sufferers can survive long enough to benefit.
Coming back to DCA, did you watch the CNN interview ? I came accross this link from another poster on this site but I can’t find the post any more – anyway here’s the link:
http://www.depmed.ualberta.ca/dca/videos/cnn_interview.wmv
Geoff
