geoff
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Rhonda
Obviously the Gemzar is largely responsible for his nausea but in my own experience a high bilirubin won’t help. My own eating didn’t recover until they got the bilirubin down below about 40 (I had an external drain and later a metal stent). Are they making any efforts in this direction ?
Geoff
I don’t want to start a political point but as a UK resident I have to say that the UK NHS is dreadful. A few months ago I came accross an independent report by a university in Sweden which examined cancer care throughout the European Union and concluded that Gernany was at the top of the list ie best and UK was at the bottom of the list (alongside Poland).
In July 2005 I had jaundice and was feeling very poorly but was told that I’d have to wait 6 weeks to get a CT scan under the NHS. I paid to get one privately and 2 days later CC was diagnosed. In September 2005 a surgeon offered to carry out a resection but under the NHS I was again faced with a 6-week wait. Knowing that the tumour was growing, and after 6 weeks may not be resectable, I paid for the surgery privately (and had a succesful resection 1 week later).
Many of the drugs mentioned by US participants to this website are simply not available to CC patients under the NHS – eg Avastin, Erbitux, Sorafenib. But, if you can afford it, they are available in the UK privately. Such drugs are routinely used in other EU countries eg France, Germany, Spain.
I have paid National Insurance contributions all of my working life but the NHS has let me down badly and continues to let me down.
Geoff
Stacie
I’ve just been looking at your family blog and hadn’t realised just how young Mark was. This is an incredibly cruel disease which deprives such a person of a reasonable life span and deprives a young family of their husband and father. I am so very sad to hear that Mark passed away and to contemplate the loss which you, his wife and children must be feeling. You have my deepest sympathy.
Geoff
Marion
Thanks for your good wishes. Of course I’ll report the outcome of my DC treatment in terms of scan results (good or bad) but I wouldn’t want anyone else to base their own decisions on my actions and results.
Unless I achieve shrinkage (which would be great but is statistically unlikely) my DC therapy results (whatever they are) could be argued as inconclusive. I personally believe in the DC approach but I know others (eg my UK oncologist) who don’t and I also recognise the statistics. Anyway we’ll see.
Whatever you and your husband decide to do, I wish him the best.
Geoff
Marion
That’s a fantastic post covering your discussion with Dr Gorter. Many thanks for providing us with those insights. I note that Dr Gorter states he has treated 200 CC patients with DC therapy, I find that number higher than I’d expect. I’m not aware of anything on that scale being reported – he refers to the ASCO conference of “2 years ago” and I guess that’s the 2004 conference at which (from memory) the total numbers reported were 17 (comprising CC, pancreatic, and gall-bladder).
Anyway I’m not trying to pull holes in your post, it’s really excellent and highly informative, many thanks.
Geoff
PS I’ve now had 3 monthly DC vaccinations at Duderstadt, the 3rd included NDV, I have a 4th in early Feb, then I’ll have a scan early March. Each time I’m getting a fairly strong reaction with quite high temperatures.
Marion
Thanks for your very kind words. I’ll certainly report on this site about my experience with DC therapy when I have something useful to say, at the moment it’s very early days. How is your husband getting on ? – it must be over a year since his resection isn’t it (about the same time as mine in October 2005) ?
GeoffYes I’ll report on this site when I have something worthwhile to say, at the moment it’s very early days in my treatment. All I can say for the moment is that I had no side-effects other than fever in the evening after vaccination.
I have met a few other patients also staying at the nearby hotel, mainly from the US, but none with CC or related cancers. Dr Nesselhut does offer hypothermia. I don’t know about Mistletoe, I got the impression that he is not convinced about its value. He also offers chemo for some patients but not in my case.
I want to stress that I am not recommending either DC therapy nor Dr Nesselhut’s clinic, this is really a research type of approach and everyone needs to weigh up the pros and cons for themselves. I’m willing to give it a try because the approach seems logical to me, and in any case I don’t seem to have many options to choose from. My oncologist in the UK is totally unconvinced.
Geoff
Well, I have now embarked upon a course of DC therapy at Dr Nesselhut’s clinic in Duderstadt (near to Goettingen) Germany:
http://immuntherapie.org/cms/98/?i=1.10..22.98..dJzj698IB3Tgwn6E790ZoOZENI0TGdWj.de
I will keep you informed of any results. In the meantime my secondary tumours are stable (despite having terminated chemo 4 months ago) and I put that down to my radical change in diet which I implement when my chemo stopped.
Geoff
Peter
If you are considering going to Germany for DC treatment I suggest that you also consider the clinic in Duderstadt (close to Goettingen) which is run by Dr Nesselhut:
http://immuntherapie.org/cms/98/?i=1.10..22.98..dJzj698IB3Tgwn6E790ZoOZENI0TGdWj.de
I’m not suggesting that it’s better or worse than Dr Gorter’s clinic in Cologne but it’s another option. By the way I recently embarked upon a course of DC treatment under Dr Nesselhut (I live in UK so flights to Germany are relatively short).
Geoff
Dear Alison
Thanks for those words. I didn’t suffer paranoia such as you describe but I did have some wierd thoughts. eg for the first couple of days post-op I believed that Prof Lodge was lying to me when he said that the op had been successful. Eventually my wife was able to convince me that he was telling the truth. A few days post-op I went into a severe depression which was tough for my wife because I hardly talked to her – that lasted for a couple of weeks and I had councelling to help me through it.
It really is very major surgery (Prof Lodge removed 75% of my liver so quite similar to Jon) and I guess we just don’t understand how the mind reacts to the severe anxiety pre-op (I’ll never forget saying goodbye to my wife the night before my op) and to all of the painkilling drugs etc.
Best wishes to you and your family
Geoff
Dear Alison
I’m extremely sad to hear about Jon, and I feel the deepest sympathy for you and your family. As many others on this site have said, it’s a very cruel disease, and Jon’s passing brings that home to us all.
I believe that you and Jon were investigating surgery by Prof Lodge at Leeds and you may recollect that I had similar surgery by him. He also warned me of a 10% chance that I wouldn’t survive such extensive surgery but what other options are there ? – like Jon, I decided to take that risk.
I’m convinced that Prof Lodge is the best liver surgeon in the UK but in hindsight I feel that in recommending him to you I might have unwittingly encouraged you to proceed, and I’m deeply sorry for that.
Geoff
hi Stacie
I’m interested to understand better the diet and supplement regime which Mark is on, in case you feel able to share that information. For example, when you say “his naturopath does not believe that you need the specific juice press” are you saying that he doesn’t have (say) carrot juice daily (which I thought was part of Gerson) ?
The reason I ask is that I have developed a diet and supplement regime loosely based on what I’ve read (eg about Gerson, Quiller and macrobiotic) but adapted (by me) to suit what I feel I’m happy to eat – it’s important to me that I enjoy my food.
What this means is my diet comprises:
no meat
no dairy products
no added salt or sugar in cooking
no foods with salt or sugar (except of course fruit generally contains sugar)
no coffee or black tea
fish (especially oily fish) 2-3 times/week
whole-wheat based cereal, oats, brown (wild) rice and bread
soya products
vegetables of all types esp cabbage, brocolli, kale, squash, carrots, tomatoes etc
fruit of all types – after every meal as desert
mineral not tap water
green tea
home-made carrot juice
all of the above strictly organichere are some example meals:
whole-wheat cereal with unsweetened soya milk and sliced banana
meso soup with seaweed and shitaki mushrooms
vegetable curry with brown rice
steamed fish with steamed kale and brown rice
whole-wheat pasta with tomato sauce incl garlic etc
salad with dressing of olive oil and lemon juiceand for snacks between meals I have fruit, dried apricots, brazil nuts with raisins, etc
Would appreciate your comments in the light of Mark’s regime
Best wishes
Geoff
My daughter Jules managed to find a blog of someone who has been having treatment under Dr Gorter at Cologne. She suffers from a brain tumour however her general experience of why she went to Cologne and what therapy she’s had and how she is feeling makes interesting reading. There are some good attachemnts covering monthly “Blogs from Germany” and – especially good – some “Questions and Answers”
In case you are interested here’s the link:
http://www.healingfocus.org/germany.html
Geoff
Hi Stacie
Thanks for a very informative and interesting post as usual. I note the following from your text : “Poly-MVA Outcome Based Investigation Conclusions …… Colorectal cancers were the least responsive” I gues this would possibly apply also to CC ? I will investigate by emailing Dr Forsythe but before doing so I wonder whether you aleady did that ?
Regards
Geoff
My daughter Jules is trying to get some data from the Duderstadt clinic about numbers of patients treated, response rates, etc. In the meantime, I felt it’s worth posting a couple of paragrahs referring to DC therapy from their website
http://immuntherapie.net/cms/98/?i=1.0.0.0.98..483c1c7e3c266f7f881680081e051289.de
“in Germany, Switzerland and the USA it has already shown some success in clinical trials. However, this form of tumor treatment is still in various phases of research which are supposed to test if this method really helps to achieve a regression of tumors”
and
“At best the immune system of the patient will fight the tumor. Published studies to date present only singular cases of successful immunotherapy treatments”
I’m still very enthusiastic to explore the DC vaccine approach but it’s not (yet) the silver bullet we all seek – but I feel that this must be the future for cancer treatment. In the meantime I agree fully with Marion when she says that DC treatment may build the immune system to help it resist cancer growth. And in any case, unlike chemotherapy, the side effects appear minimal.
Geoff
