peter
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Jules, I find this news encouraging.
I’m surmising that the Dr Chang you refer to is likely the same Dr Chang who runs Meridian Medical which is the link I posted in this chain on Dec 18.
Best wishes for your Dad’s success with this therapy.
-PeterSome additional links for Dendritic Cell information.
I got to them by drilling down from a link Geoff posted earlier so many of you may have already seen this.The Meridian group in NYC appears to possibly do some interesting work. I have some TCM and other sources I use in NY checking them out and I will post any pro or con feedback that I get.
http://www.meridianmedical.org/programs.htmlBe sure to go to the second page on this link:
http://www.dendritic.info/-Peter
Geoff,
I know a lot of us will be very interested in any details of your DC experience you can share and of course your results when the time comes.Does Dr Nesselhut have any experience/results with other Cholangio patients? Does he combine the DC with other treatments like herbs (mistletoe) or hypothermia?
Good luck and all the best results with your treatment.
-Peter
Thanks Stacy.
I’ve written to Dr Gorter asking direct questions including the name of a patient he has worked with that I can contact but so far no reply. I’ll likely need to try to get him by phone.
Did you notice that Jeannine Walston, the young woman with the brain tumor whose blog documents her DC treatment, did not experience a reduction in the size of her tumor? Interestingly she went into the treatment with stable disease and it remains stable, hopefully with a strengthened immune system.-Peter
Jmoneypenny,
What a great logname! Are you British?I have to assume that with no jaundice that none of the tumors are blocking the flow of bile. The jaundice many of us have is because the bile is restricted as a secondary symptom of the cancer.
The bloating sounds like it could be ascites and even a simple ultrasound can determine this. You may want to ask for one although the Doctors must have done some kind of scan (CAT or MRI) to give you the information you now have. If the scan covered the abdomen at all they can tell you if Ascities was present.I’m sorry you have had to find your way to this board but there is a lot of god information here. Best wishes to you Mom and your entire family.
Time for an update. Pasted in below is a copy of message I sent to famiy and friends this week.
Courage all – Peter
My scans and appointments at the Lahey clinic yesterday, Dec 5th, got off to a bumpy start when I had a bout with Cholangitis (big word for an infection in the bile duct) on Monday night. Chills and fever kept Amy and I up much of the night but I was stable although a bit tired for the CAT scan early the next morning. The infamous Murphy Law esq came along to help with the tests as well and we were delayed for 2 hours by bureaucratic screw ups. This made us late for the remaining appointments with Dr Jenkins (surgeon) and Dr Stuart (oncologist) but at the end of the day good folks prevailed and we got all the time we needed with everyone after the results were in.Simply put my cancer is progressing. While the clinical evidence of recurrence has been pretty clear since July the scans have now evolved to show small but identifiable tumors especially in my abdomin. The other key risk factor is mass at the surgical sites of my portal vein and bile tube. This can never be clearly defined by scans but is almost certainly a combination of scarring and cancerous growth. Not great news but frankly not a surprise. Even with our pretty extensive understanding of what can be known of this rare cancer, and where I am in the process, it still has a bit of the effect of a cast iron frying pan whack in the face.
So what does this all mean right now. Well guess what, a bit more confusion but there are things we must now consider.
Charlene,
Who does your Dad have overseeing the Amino acid treatments. Is it a naturopath perhaps or a progressive oncologist who is administering this in conjunction with the chemo?
Thanks for posting your Dad’s great results. May he stay ‘stable’ for many years.
-PeterStacie,
Is Mark following the full Gerson regime with the coffee enemas as well as the diet?
It’s a difficult protocol to follow w/o the support of a spa or living center where there is help with much of the work required but they do have some positive results that interest me.
-PeterHi Kate,
Try a search on Cholangitis. This is a billary tract infection that is common in those of us with resections.
I carry a CIPRO perscription with me all the time although I haven’t had to use it in a year now. In my casse it has helped to limit the foods that I eat that are mucus producing. This includes dairy products and coffee which has been the most difficult for me to give up. It does make some logical sense as you can imagine mucus contributing to gumming up your system and therefore contributing to a site for infection to grow.
Hope this helps.
-PeterIt isn’t the juicing the gets to me. It’s cleaning the @#$% juicer afterwards.
: )
I’m now juicing twice a day but only cleaning the juicer at night. Seems to work OK.I’d like to offer more support on Stacie’s suggestion of the geron diet.
It is quite strict but he did his first work in the 1940’s and does have some solid documented success.Mary Anne,
I do believe diet is a key to our health and well being. It’s most effective in staying healthy of course but at the very least I believe it can be beneficial when used in concert with other therapies. One very simple example to understand is that a diet that aids our liver can help the liver in the work it must do to filter other toxins (like Chemo) from our bodies.
I’m going to list two books I’ve found especially helpful and will put in the Amazon links so anyone interested can check the comments and reviews. This is not an endorsement of Amazon, it’s just easy.The first “How to Prevent and Treat Cancer with Natural Medicine” has a lot of good information on using diet while taking Chemo as well as some supplements that can be used with Chemo.
http://www.amazon.com/gp/product/1573222224/102-1551144-1868104?ie=UTF8I also use “Healing with Whole Foods; Asian Tradition and Modern Nutrition” by: Paul Pitchford.
ttp://www.amazon.com/gp/product/1556434308/102-1551144-1868104?ie=UTF8I also see, and work with, a TCM (Traditional Chinese Medicine) practitioner. Great guy and human being who I also talk with about diet as well as other things. One thing I respect about TCM is that it doesn’t make the exorbitant claims of success that some of the herbs, remedies and centers (mexico comes to mind) make these days. TCM has just quietly worked with people for thousands of years. Not always with a cure but also without inflated claims. Something I’ve always remembered that this man told me early on in my cancer was “If the cancer is going 100mph and the natural remedies may be able to help at 20 mph you need to do the things that may work to slow the cancer down so diet, TCM, or whatever have a chance of helping you.”
My 2 cents.
-PeterThankyou Evan. One complexity seems to be radiologist with no CC experience, nor understanding of my very unique plumbing after surgery, reading scans with often different interpretations then the Doctors who are familiar with BDC. Essentially this new information refutes the read other radiologists had on my earlier scans. The Docs with BDC experience don’t see cancer on those scans either.
My best to you and Dawn. I understand about her appetite, I feel the same way probably from the ascities.
A note to all of us that CA125 may be a helpful marker for either abdominal mets or liver disease. This protein can apparently result from either of the above or just from Ascities whatever it’s cause even though it is most often considered for cervical cancer.An update copied from email to my friends and family.
-Peter
I have had 3 primary tests over the last 2 weeks.
New blood work, a draw of the ascities (fluid) in my abdomen, and a 700 image/2 hour MRI of my liver and abdomen.
The blood work continues to show elevated (but not off the charts) liver distress, an increasingly rapid rise in a tumor marker (CA19-9),
and a new tumor marker (CA125) also elevated. The Ascities was
negative showing no tumor cells and the MRI also did not show any specific tumors or identifiable cancer.If you’re now confused, join the club! Amy and I met with Dr. Stuart, a Boston oncologist with BDC experience, and looked over his shoulder as he explained what he saw in the MRI. His advice was:
– There is no identifiable cancer where we’re looking right now and therefore nothing for oncology to treat.
– Possibilities for my symptoms may include cancer that is microscopic or not showing up, liver disease which can sometimes result from the kind of extreme surgery I had, maybe an infection.
– Repeat all the tests in 2 to 3 months and look again.There is some disagreement among the Doctors who are helping me about what the results, and my symptoms, may mean. I’m still waiting for the ‘official’ radiologist report on the MRI and will likely have that scan read by a second radiologist, perhaps in Boston.
Quite an emotional roller coaster ride so far. My thoughts this
morning………..
I’ll just ‘be’ with he confusion and questions, this where I am right
now. At the same time we’ll continue to look for what’s going on.
Perhaps talk to my GI doc again.
Focus even more on diet, TCM and perhaps some supplements aimed at liver health.
Exercise and look into getting this foolish hernia repaired before all that great powder I’m expecting this winter arrives.Always remember the Chinese symbol for Crisis is the combination of characters for danger and opportunity.
Maneesh,
There is quite a bit of information on this board about Chemo agents that have been tried with BDC. Unfortunately there are no sivler bullets.
I also had a Klatskins tumor and some bouts with Cholangitis. I have been reasonably successfull limiting the Choangitis with diet. In part you want to minimize mucus as much as possible. This means restricting mucus forming foods like coffee and dairy products. Fresh fruits and dark green vegatables. Restrict or eliminate red meat. I am not a nutritionist but you may wanto to seek advice in this area.
It’s important to try to limit the Cholagitis so she doesn’t build up scar tissue which can restrict the small bile tubes.
Best of luck to your Mom and all your family,
Peter
