Tues night update

[Guest guest]

(I began the following post last night (Tues), but could not finish

before getting really tired and going to bed !)

Dear Friends,

Wow! just got online tonight & read thru today's posts...I wish I

could write to each of you and thank every person so much for your

kind words of love and support. Not only for your great e-mails, but

also for the beautiful notebook my good friend Amie recently sent me

filled with even more letters from members of this group. She and

Priscilla had apparently " conspired " ;o) to create a wonderful " Book

of Honor " with all the letters, you have no idea how much it means to

me in these difficult times. I know it probably sounds trite, but,

all I can think of to say is " thank you so much from the bottom of my

heart " !

I wish I could answer each e-mail and each letter, but there are so

many I could never finish! Please know that even if I

didn't/couldn't give a personal response, your message was read and

will be saved forever for my family (and especially for my beautiful

8 year old daughter).

Baylee, I do feel your " cyber-hug " and I send you another great big

one back!

a wrote:

<<This is not just another posting board... this is a family and its

all thanks

to you>>

You are right – there is something very different and special about

cancer forums. They represent the very best of the Internet, to

allow people to come together like this is an incredible thing. The

friendships and bonds created across the world by boards like CCS are

absolutely amazing!

a wrote:

<<I am getting the sense that you have decided against any chemo, is

that true?>>

Maybe. At present I'm not sure if they would even give it to me.

I have started to develop jaundice (liver function tests must be way

off) and have not really been able to leave the house for a few weeks

now. I would have a pretty hard time actually attending any chemo

sessions regardless of how close to me they were. I have not been

eating well, and anything which would interfere with what little I

can eat would probably be very harmful (weight has already dropped

considerably). However, I have a " phone appointment " with the

oncologist Wed. afternoon, during which I will ask a few questions.

Looking back, however, the " optimal " time for me to have begun any

chemo would have been earlier in the year (Feb/March), when it was

becoming increasingly clear that the surgeons would no longer go

along with " my " idea of " cherry picking " (as another poster put it!)

mets off as they arose. Perhaps I should have tried that.

My " surgical strategy " worked quite well for 2 two years, two VERY

high quality of life years. But unfortunately it could not work

forever.

As you may recall, any of the " big guns " chemos (Camptosar, Oxal),

would have had to be given to me as part of an NCI sponsored clinical

trial (due to my poor insurance coverage which will not pay for chemo–

I am self employed). There are no NCI trial locations near me. The

typical clinical trial for chemo-naive stage IV would involve adding

a new drug to one of the FDA approved chemos Oxal/Camptosar, but the

trial sponsor would cover only the cost of the experimental drug, NOT

the Oxal/Camptosar ($10,000/chemo session, or $20,000/month for Oxal

according to my onc). Only NCI sponsored trials cover ALL costs. To

enroll in one of these, I would have to travel to land or

Washington DC, etc. every week for treatment (not easy). But as

noted before, I don't think at present I would even satisfy the

inclusion criteria for any of these trials and fear currently they

would do more harm than good.

UPDATE: Wed afternoon. I talked to the oncologist, and he wants me to

be admitted to the hospital tomorrow morning for some bloodwork,

chest X-ray, and CT scans. Says depending on the cause of the

jaundice, there may be some options to relieve symptoms such as

insertion of biliary stent. The extreme shortness of breath may be

caused by fluid on the lungs which may be drainable, or it might be

caused by cancer nodules (in which case nothing of immediate help

can be done). I suspect it is fluid just because of the way it feels,

guess I will find out soon. Will be able to further evaluate the

possibility of any sort of chemo after the tests. Didn't really learn

anything new here, I've just been dragging on nailing it all down for

sure 'cause I'm kinda scared what the scans will show. Will let you

know what happens as I am able.

Kris – thanks for your note. . . and thanks for all the great posts

you've made, especially about your experience with Dr. Sugarbaker. I

know these have been of tremendous help to everyone, and probably

will result in lives being saved by more patients looking into and

undergoing his surgery. I wish you ongoing success in your own

treatments!

Lea wrote:

<<I found myself wondering about the before cc who obviously

has so many computer and search skills. I now know there is a search

box and if that info is there I can find it. If it isn't there and

you are willing, I'm sure I am not alone in being interested in the

real who is so much more than his diagnosis and disease>>

Sigh. Yes, so much more to all of us than the technical details of

this horrible disease.

I was/am a Statistician/Consultant in the pharmaceutical industry,

mainly in the area of designing and analyzing data from clinical

trials. I spent a year working with a small Biotech company in

California which developed one of the first monoclonal antibodies

against a type of lymphoma (blood cancer), helping them to prepare

the statistical parts of their BLA (Biologics License Application)

prior to FDA approval of their drug. My academic background is solely

in the areas of Mathematics/Statistics, I have never had any type of

formal training in Medicine although I have worked very closely with

many physicians on a professional level. Guess somewhere in the

middle of all that I had to pick up a few " research skills " here and

there to be effective ;o)

Cliff wrote:

<<I used to post a lot at another group, but the powers there

did not like the books and tapes that I wrote that I liked that helped

me. Didn't care much about my attitude and some didn't think too

highly

of my treatment ... which they never heard of that saved my life>>

To be honest with you, I never really understood the intense feelings

which some have regarding stage IV treatment. There are clearly

some " conventional " things which can help, but the number of these is

very limited. The Stereotactic Radiation you had would probably be

classed as an " unconventional, mainstream approach " rather than

an " alternative approach " – it is based on accepted principles

(radiation) for cancer therapy. Various forms of SR do seem to be

becoming more widely known/used, which is a good thing. BTW,

before I heard you talking about SR, I hadn't heard of it myself! I

had SR for a liver tumor over a year ago (which did not recur), so I

KNOW from first hand experience that it can work!

As for the other things you've done for treatment, seems to me the

fact you have done so well compared to many stage IV's who chose a

completely conventional path would make it a bit difficult for anyone

to say much ;o) You have always been very careful to point out that

the things that " work " for you may not " work " for others because each

person essentially has a " different " cancer. Seems to me if you're

so lucky as to have " stable disease " , there's no problem and you

should just keep doing whatever it is you're doing! It might

be " really working " or it might be " just a placebo " , but what

difference does it really make LOL!

Whew! Anyone I have inadvertently left out please forgive me. . . I

have learned that I had better go ahead and post an " imperfect " e-

mail than one which has been gone over with a fine tooth comb. . .and

I have learned that I had better post while I am feeling ok, because

never sure how things will be tomorrow!

Best Wishes, Love, and Hugs to All,