My history

Time for another update, again copied from a mail message to my friends and family. It came at the end of an unexpected hospital stay last week. It’s written for folks who often have less knowledge of this disease then many of us here.

Since getting home the medicine has caused some issues I’m working on, I’m trying to get back to a microbiotic diet with a good hit of protein thrown in to try to stabilize, if not increase, my weight. This means some organic meats and fish.

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1. The blood and vomiting that brought me in here appear to be the result of some pretty minor symptoms that are easily fixed. The test
this AM will help confirm this.
2. I do have some very consequential issues that are not new and that
we have been tracking and are now getting worse.
One is a restriction of blood flow through a vein that was part of my
original surgery. This causes what is called Portal Hypertension and
produces some of the symptoms and problems I am dealing with.
The second is a restriction of the flow of bile from my liver which
causes the bile to backup into the liver contributing to liver damage
as well as other symptoms.
Both of these restrictions are the result of the inevitable scarring
that occurs with the kind of surgery I had. The scar tissue, likely
mixed with tumor cells, continues to accumulate creating problems.
3. The 5 weeks of Chemo ( Two 2 week cycles with a week off in
between) appears not to have been effective in fighting the cancer as
measured by a continued increase in the tumor marker in my blood.

So, what’s to do now? While we had hoped that both of the
restrictions could be eased with the insertion of stents to enhance
the flow this does not appear to be possible in my case. The Doctors
here, in consultation with Dr Jenkins who is my Boston surgeon and
for whom I have the utmost respect and trust, have agreed that the best
course is to treat my symptoms with a variety of drugs. I started
most of them last night, so far so good.

I also have now had a viewing of my stomach which showed an area of restriction. We’re waiting for the pathology report on a biopsy of the restriction.

Jules,
The recommended off label drugs are:
Avandia – Used for Diabeties
Celebrex – Used for arthritis
Zocor – cholesterol- lowering drug

The pharmacutical grade mushroom extract is called Lentinan.

PubMed search will yield results on all the above.

I should have been more specific however. I’m not certain I will take all of these. In particular a couple contain warnings that they should not be taken by patients with liver problems. Most of us would qualify for this and I need to do more research.

The research you mention sounds like oncolotic virus work I have seen elsewhere. My understanding is that the success in this area is working with solid tumors and not a systemic matastisis. I’d be interested in the link.

Your Dad seems very knowledgable and I learn a lot from his posts. Reminds me again how fortunate we are to have this resource and my thoughts and prayers go to Mark and his family who made this possible.

Another update copied from a mail message to my family and friends.
Geoff, I saw on another thread that you have completed 3 DC treatments and, I think, have a scan in Feb. We’re all praying for you and for news of break thrus in these new technologies which will hopefully become available here.

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I’m about to embark on the next step in this journey with cancer and
it seems a good time for an update.

The disease is progressing. I am more aware of changes in my body,
the most obvious of which is increased bloating which is called
ascities. I remain very fortunate that I am not in pain and most
days my energy level is pretty good although I usually don’t sustain
that for a full days activity. Fortunately I was never much of a
‘work all day and dance all night’ kind of guy so the extra naps fit
in pretty well. I am walking a couple of miles most days before work
and I skied (dust on crust is the closest we get to skiing in VT this
year) over the weekend.

I will be in Colorado next week visiting my daughter (Carolyn, I’ll wave in your direction) and will be starting chemotherapy the first week in February when I return. In conjunction
with the chemo I’ll also be talking some off label drugs that are
available in this country but are not normally used against cancer as
well as some pharmaceutical grade mushroom extracts that must be
imported from Japan and require special compassionate use approval
from our government. We’re being helped in this are by Dr Chang in
NY city who combines 3 areas I am interested in. Dr Chang was trained
as a Doctor in China, came to the US for a medical degree from Brown
and has worked at places like Sloan Kettering and the National Cancer
Institute. He also has connections with the immunotherapy work
being done in Germany that I feel holds promise.

This all gives us renewed hope that I’ll be one of the lucky ones
where the bulk of the cancer is reduced by the therapies and I gain
extra time for miracles to happen or new treatments to emerge.

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