October 25, 2010 at 7:51 am #14804nailMember
Thanks for share very informative detail…..May 21, 2008 at 3:33 pm #14803iris-aMember
Today I posted my introduction to this forum. You can read there about my husband Peter. I think you are going through a hectic time again. I hope the doctor can provide you with another stent, so your direct complaints can disappear. I would like to wish you all the best and hope you will be on this forum again soon. Thinking of you,
Iris.April 30, 2008 at 9:35 pm #14802
I don’t check in on this site very often now. Mainly because it just hurts too much.
I just wanted to respond to you. I feel very emotional having just read your posting. It is very likely that my Dad is the donor. I feel very comforted knowing that you are the recipient and I know that my Dad would feel the same way. My Dad gained strength from this online community and it helped him to not feel alone in his fight. If he could do anything to help gain insight into this disease and progress towards a cure then I know that he would have wanted to be in there.
Thankyou for sharing this information and I want you to know that I am thinking of you (and all my other friends on this site). Lets beat this beast.
love to you all,
JulesApril 24, 2008 at 9:46 pm #14801devoncatMember
I got little chills when you said you wondered if it could be Geoffs. Wouldnt that be wonderful? It would be like a part of him is still here with us, being forthright and slightly optimistic and always fearless and practical. Thanks for a small trip down memory lane.
Anyway, I hope they get the cells they need to load the treatment properly. Keep us posted.
KrisApril 23, 2008 at 7:16 pm #14800
It is wonderful hearing from you. Are you planning on continuing with Dr. Nesselhut’s Dendritic Cell Therapy, or are you considering other forms of treatment? Again, so glad to have you back on the site.
MarionsApril 23, 2008 at 5:41 pm #14799
Celebrated my 1 year survival last month! But soon found out that the cancer had grown over the top of my permanent metal stent in the bile duct, and was choking off the flow of bile again.
I’ve been seeing Dr. Nesselhut since Sept. 2007, and had 5 treatments, with NDV and dendritic cells. Can’t do hyperthermia because of the metal stent.
My local doctors will try to get some tumor tissue when they put in a permanent extension of the stent that they placed a year ago. But Dr. Nesselhut would like 1 cubic centimeter of tumor tissue to get the stuff they need to load the dendritic cells.
Dr. Nesselhut also said he now has a bile duct tumor cell line, which can be used if I can’t get enough of my own tumor tissue. I can’t help but wonder if Geoff is the donor. Whoever donated it, I am infinitely grateful. I don’t have much hope for the dendritic therapy to work on me without loading the cells, given that the tumor has been growing while I’ve been doing the treatment (unloaded).
I’m sorry to hear that Geoff died. He was my inspiration to try this therapy. Dr. Nesselhut’s son, who is a doctor at the clinic, said that cholangiocarcinoma is a hard one to treat.
Sara CampbellNovember 9, 2007 at 9:33 am #14798
thankyou Helen for posting a link to the charity you have set up in memory of Alan here in the UK – I noticed that you have a link to DC therapy and I thought it might be helpful to post it here under the DC thread as it explains clearly how the treatment works. It is also very encouraging to hear that this treatment is being taken seriously at a respected cancer research institute here (we travelled to Germany to get this treatment for my Dad and I believe that it prolonged his life significantly without having to suffer harsh side effects). Anyone interested in this treatment may also be interested to investigate the immunotherapy research unit at St Georges Hospital, London.
Here is the link:
ps – Sara, wishing you every success with your treatment
very best wishes, JulesOctober 17, 2007 at 8:14 pm #14797
Happy for you having started the Dendritic Cell Therapy. Wishing for success all the way.
MarionsOctober 16, 2007 at 11:52 pm #14796
I went to Dr. Nesselhut’s clinic for treatment last month & this month. I have it from a very good source that they no longer have a working relationship with Dr. Gorter. I gathered that part of the problem was that Dr. Gorter was too busy with other stuff and wasn’t giving his patients regular treatment.
At any rate, Dr. Nesselhut’s lab in Duderstadt does all the dendritic cell work for Dr. Peters in Gottingen, as well as Dr. Gorter. Also, Dr. Nesselhut has treated far more patients with dendritic cell therapy than have the other two doctors. If you’re going dendritic, Nesselhut is your man.
From Gottingen train station there is a bus that takes you to Duderstadt in 1 hour. For 60 Euros or so, you can stay at a very nice b&b that gets a lot of Dr. Nesselhut’s patients: Ziehr ! Stuck: http://www.ziehrstueck.de/
Sara C.August 20, 2007 at 7:53 am #14795
Sara and Marion,
thankyou for your good wishes, the new protocol that my dad had this time contained DC cells primed with tumor cells (taken from the analysis of the ascitic fluid), therefore this treatment is aimed specifically at the eradication of the tumor. Dr Nesslehut uses his initiative and is always refining and improving on the technique.
Sara, I am sorry the oxy trial does not appear to have been successful, I can understand your interest in the DC treatment, please bear in mind that it is an experimental treatment, we cannot directly attribute the stability of my dad’s disease to this – he has also radically altered his diet and takes various supplements.
If you are interested in Duderstadt clinic then I can tell you that it is not too hard to find – we fly to Hanover and take a taxi to the clinic, it is about a 1 1/2 hour drive south from the airport.
JulesAugust 20, 2007 at 2:50 am #14794
It sounds like Dr. Nesselhut is doing a great job with your Dad. I’ve been trying to decide which clinic to go to. Dr. Nesselhut sounds like the most remote of the three clinics I know of – the others are Dr. Gorter in Cologne, and Dr. Martin in Gottingen. I would fly into Frankfurt. I’m guessing your Dad heard something good about Dr. Nesselhut, because Duderstadt seems to be off the beaten track.
I think I committed something of a gaffe in asking Dr. Chang in New York how he is able to administer the injection – whether it is approved for use in the U.S. He said:
“… We rather not discuss the details or legal logistics
of dendritic treatment as might be performed in the US
and would rather discuss this with our patients who
are seriously interested in person. … “
Sara CAugust 19, 2007 at 9:16 pm #14793
I am so very relieved to hear such good news about your Dad, Geoff. He has chosen a treatment widely overlooked and not recognized in the medical community, and yet the side effects are tolerable. Hoping for everything else to be falling in to place, also.
MarionsAugust 19, 2007 at 7:08 pm #14792
we went this week to Duderstadt for another treatment. The last 2 treatments have been a different protocol – Dr Nesslehut has devised a superior technique – although the side effects last a little longer (fever on and off for about a week following treatment). My dad has been moved onto ‘more experimental’ protocol following the development of ascities which indicated disease progression. The ascities has stabilised – there has been no more fluid accumulation since the last drainage (carried out in Germany). Dr Nesslehut was very pleased to see this and indicated that the new protocol appears to have been effective. My Dad will soon be having a scan which we hope will confirm this. Unfortuantly my dad continues to suffer with a persistant cough which has become very debilitating for him, disrupting his sleep and even ability to eat at times. We suspect that this is caused by an infection, we are going to obtain cultures for analysis to determine the right antibiotic to treat this. My Dad also uses a portable nebuliser at home which provides short term relief.
Just thought I would update you all – so far the DC therapy seems to be keeping things stable, I know how much all of us are waiting for a breakthrough in the fight against this dreadful disease.
JulesAugust 14, 2007 at 11:24 am #14791kate-gMember
Yes, I also hope he is feeling better soon Jules!August 13, 2007 at 4:49 pm #14790ukmemberMember
My best wishes to you and your father and hope he is feeling better soon.
- You must be logged in to reply to this topic.