August 13, 2007 at 4:49 pm #14790ukmemberMember
My best wishes to you and your father and hope he is feeling better soon.
PatriciaAugust 8, 2007 at 7:32 pm #14789julesParticipant
I will reply to you on behalf of my dad as he is not feeling too good right now. My Dad (Geoff) has DC treatment as a clinic in Germany under the care of Dr Nesslehut (if you search back on my dad’s previous posts you will find further info, he has been communting to Germany about once a month since the end of last year).
My Dad has not been on chemo with the treatment, the side effects are minimal – fever and flu like symptoms on the evening of treatment. The treatment is experimental and my Dad’s disease has been classified as stable, he has also modified his diet and takes various different supplements. We do not know whether it is the treatment or diet – or some other factor that has kept the disease dormant. Overall I would say that the treatment has provided my Dad with a reasonable quality of life, the commuting has been tiring though. Dr Nesslehut always gives my father alot of time and is very knowledgeable and respectful, recently he was able to assist with drainage of ascities, in clean surroundings (a far cry from the filthy wards in an NHS hospital in the UK). I personally believe that immunotherapy offers alot of promise in the fight against cancer, it is an exciting treatment that can be modified to seek out individual tumor markers and most importantly, long term side effects are nil.
Hope this helps – please see our other posts for further info. I hope that the OX-40 trial goes well for you.
JulesAugust 8, 2007 at 5:38 pm #14788
Thanks for your reply. I am in full support of fighting this disease (maintaining good health in general) with lifestyle, diet and natural products. I attribute at least part of my current success to diet, Chinese medicine, and the mushrooms.
In my case I lost so much weight on what was essentially a macrobiotic diet that a few months ago I modified it to increase (organic) fats and protiens. In conjunction with the chemo and mushroom extract my markers have returned to the normal range and I’ve been able to gain back 20 lbs. I recognize this is likely a grace period for me and also try to remember how blessed I am.
What I may have learned in this process is the need to listen closely to what our health and bodies are telling us and to consider all the possible resources available to us world wide. We have much to learn about this disease as so little research has been done to date.
The CholangioCarcinoma Foundation of which this board is only one piece is working hard with all volunteer labor to bring research efforts to CC. (a blatant plug for anyone reading this post who hasn’t investigated what these good folks are doing beyond this message board.)
May Patty’s program bring great results. My thoughts and prayers are with you all.
-PeterAugust 8, 2007 at 3:25 pm #14787tedpattyMember
I could not hep but reply to your questions about AHCC. I am sure the you have read some of our posts where we have mentioned AHCC. Patty and I can only use our own experiences with AHCC as a source of comments. I have researched all I can read on the subject and it all sounds good as the research says that there are at least “700 hospitals overseas, (mostly in Japan)” that are using AHCC with a good success record. I can assure you that we are not promoting it. We just would also like to hear of others that might be using it. Patty is taking 3 grams daily taken morning noon and night. The amount taken will be increased if the CA19-9 does not come down. Patty is also taking 16 grams of IP-6 daily. She also takes Shitaki and Reishi mushroom extract. As you probably know from our recent posts, Patty has had no chemo or radiation since her diagnosis and we are relying completely on supplements and lots of carrot juice. This puts her in a unique category as most everyone on this site resorts to chemo and raditaion. She feels good and has a good quality of life. She is in her seventh month since diagnosis. You mentioned the high cost of the supplement. We get ours from Vitacost. We would also love to hear from others that are taking these supplements.
TedAugust 8, 2007 at 12:17 pm #14786
I’m guessing that is your name and my apologies if I have it wrong.
I’m curious about who you are, your interest/relationship with AHCC, and your reasons for posting here. As this is your first post we know little about you and, to be blunt, have had situations with vendors promoting a product they have an interest in.
This is also not a idle question for me as I have researched and considered AHCC.
I am currently taking what I strongly suspect is a similiar pharmacutical grade mushroom extract called Lentinan that I import from Japan under a compassionate use permit I had to get from the FDA. It is quite expensive and I am interested to learn if AHCC might give me a similiar value at less cost.
If you have personal experience with AHCC I’d like to hear it but I also have a healthy skepticism of folks promoting a product they have a financial interest in.
-PeterAugust 6, 2007 at 3:51 am #14785aronhogParticipant
AHCC without Bioperine – AHCC (Active Hexose Correlated Compound) is a proprietary compound produced by cultivation and enzymatic modification of several species of mushroom mycelia, including shiitake, grown in rice bran extract. Considered a superfood supplement in Japan, AHCC (Active Hexose Correlated Compound) has been researched extensively for its immune-enhancement properties. According to human and animal research, AHCC may significantly increase Natural Killer (NK) Cell activity. AHCC (Active Hexose Correlated Compound) may also increase macrophage activity, enhance cytokine production, and support the healthy functioning of the liver as well as act as an antioxidant.August 3, 2007 at 3:06 am #14784saracMember
I would really like to hear some conclusions from anyone who’s done dendritic cell vaccine therapy … knows someone who did it … etc. Is Geoff the only one? I’m just finishing an OX-40 trial (described in separate post), and I’m looking for what to do if the OX-40 didn’t help.
Some questions I have:
Where did you go for treatment?
What was the outcome of the therapy for you?
Did you have chemo before this therapy? What other treatment?
When did you start the dendritic therapy?
How many treatments did you have?
How long do you have to be there for treatment (e.g. 10 days, go home for 2 wks., 10 days, etc.)?
Would you make the same choice, knowing what you know now?
What would you do differently?
Any other observations?
thanks! Sara CJune 8, 2007 at 3:12 pm #14783
Ted & Patty,
I agree that the descriptions of Lentinen and AHCC sound quite the same. I don’t know if it’s the same thing. I had to get (with the help of a NY Chineese doctor) a compassionate use permit from the FDA to be allowed to import it and AHCC is available over the internet in this country so there may be some difference.
I had seriously considered AHCC and it has the advantage of being much cheaper since no US medical insurance will pay for either. This is not just unfortunate but just plain wrong. (I’ll stay off my soapbox……..)
-PeterJune 8, 2007 at 2:27 pm #14782tedpattyMember
Is the Lentinen injections the same as AHCC ( Active Hectose corrilated compound)? Patty will be starting on that today. (3gms/day). She has had no chemo or radiation since her diagnosis and Feb 07. Her tumor was unresectable. She has been on IP-6 and lots of carrot juice and shitake and reishi mushroom extract. She feels well and has energy and has gained 25 lbs since her surgery. Her appetite is really good. You are one of our “hero’s” here on the cc website. Everyone has become our “family” . Best to you all.
Ted and PattyJune 8, 2007 at 1:19 pm #14781
Wonderful news. It’s gratifying to hear of success stories always and encouraging to know that the future of immunotherapies to beat this dread disease shows hope.
I also am experiencing some success. My marker numbers are down to near normal and I look and feel the best I have in 6 months. I am currently on a very low dose of Xeloda, continuing wtith lentinan injections which I import from Japan, and have increased/ both animal protinen and good fats back into my diet in an attempt to gain much needed weight back. I’m making progress on the weight (I’d dropped into the 130’s (lbs) which is too little for my 6′ 1″ frame). Something is keeping the beast at bay for the moment at least.
One thought on Ascities. My understanding is that it can be caused by the cancer but another potential cause is liver disease. In my case the scaring from surgery and build up of bile has probably caused a secondary sclerosis of the liver and I’ve been told it’s possible my ascities comes from that. Having said this my ascities is also down considerably, possibly the immune enhancing effect of the mushroom extract or perhaps the Xeloda. If they do drain your ascities they can make an educated guess as to the source by the color of the liquid and also send the fulid for pathology to test for cancer cells although this can apparently return false negatives.
Keep up the good news!
-PeterJune 8, 2007 at 8:48 am #14780geoffMember
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) ?
GeoffMarch 29, 2007 at 12:45 am #14779geoffMember
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:
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:
GeoffMarch 25, 2007 at 9:47 pm #14778kate-gMember
Geoff, I am so glad that things are going well for you.
For those of us who are ignorant/bamboozled, could you explain the HYPERTHERMIA thing please?
You are not far away from me, and I think of you often!March 18, 2007 at 5:37 pm #14777marionsModerator
I am still in the process of compiling my information in re: to hyperthermia but I will certainly post before your return visit for treatment in April.
So glad to hear about your positive response.
MarionMarch 18, 2007 at 2:09 pm #14776
Geoff, That’s the news we love to hear! May they shrink to nothing.
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