Re: My history

Peter,

Your attitude sounds very similar to my Dads (Geoff) - despite the fact that his recurrance was diagnosed April 06 his scans show no change.  We have been told that at present research in the cancer immunotherapy field is moving very fast, if we can just keep things stable then the techniques are improving all the time.  You may or may not be aware of some recent research carried out at Oxford University here in the UK which incoporated work injecting cancer with viruses including the common cold virus with impressive preliminary results - I think my Dad understands it better then me so he may be able to post and explain it better.. (I will look for a link and post it meanwhile).  what are the 'off label' drugs you are planning on taking?

I wish you all the best with the chemo regime,  meanwhile I hope you have a great break and respite from it all in Colorado..

Jules

Re: My history

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.

Re: My history

PETER,
YOU HAVE BEEN MY INSPIRATION IN MY SEARCH TO FIND A WAY TO HELP MY DAD THANK YOU SO MUCH!
Please read my post titled "Confused"
You will understand why I am thanking you!
God Bless
Michelle and the whole Mack Family

Re: 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.
-----------------------

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.

Re: My history

Peter, I am sorry to hear of your most recent difficulties. We will pray for good results from your treatment adjustments. Dawn had surgery this last Monday to remove two lymph nodes that had recently grown in size. We will get the pathology report sometime next week.

May God give you strength in your battle Peter.


Richard

Re: My history

Peter

Sorry to hear about your current problems.  You have such a positive attitude that if anyone can get through these issues then you certainly will.  Anyway, your survival and active life since surgery in 2003 is an inspiration to us all and we need you to continue showing us a CC success story !

I'd be interested to hear what symptoms are presented by the Portal Hypertension.

Also I note that you are adding organic meat to your diet - is this better than fish in terms of putting on weight ?  The reason I ask is that I avoid meat (but eat lots of fish), and like you I seem unable to put on weight.

Best wishes

Geoff

Re: My history

Geoff,
I have not been working and some how missed your last message.  My apologies.
It's hard to distinguish the portal hypertension symptoms from the cancer.  Tired, some weakness etc.....stuff we're all familiar with.
If you get varicies as a result of the PHT, which I do not yet have, they can cause dramatic symptoms.  They are fragile, tend to burst and there is then internal bleeding which can be intense and high risk.
The increased protien from the organic meat does seem to be helping both how I feel and my weight.  My weight stabilized at first and I now have managed to add a few pounds.  I believe we're all different and must listen closely to our bodies to find our best path.
Things go well for me right now, see my next message, as I hope they do for you.

-Peter

Re: My history

Hi Peter,  Sorry to hear of your current situation.  A blast of support is coming your way.  Have your ever heard of URSODEOXYCHOLIC ?   I haven't looked that far in to it ,but in short Iv'e read it has been used for Billary chirosis and also to treat ascites, juandice etc.  It is also been used to dissolve kidney stones.  I don't know Peter, just shooting in the dark on this infor.  Hopefully you will feel better after gaining some weight and increasing your protien. Best to You!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My history

Another update copied from an email on May 8th to my family & friends.
================
I'm writing this time with good news.

I'm am doing and feeling well.  Today is the last day of the current
Chemo cycle and, while I have some of the side effects which are
manageable with care and naps, I feel better then I have in quite a
while.  A recent blood test showed another decrease in the tumor
marker so something in the combination of Chemo/mushrooms/life that
I'm doing is currently helping.

To add to this good fortune I had the  ascities (fluid build up in my
abdomen) drained a couple of weeks ago and with help from the
diuretics I am taking it has not come back as it did last time.   This
gives me both a semblance of a reasonable body shape and a marked
increase in comfort.  I can even bend over to tie my shoes again.

I'll see the Oncologist in Boston again in a couple of weeks and
decide on the next step after that consultation.  In the meantime I
celebrate my good fortune.

I will be away from email and computers for an extended Mothers day trip until about May 17.