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Jerry,

It was from this email that went down.

Perhaps this is another avenue for you to try.

w/ Prostate Cancer

> Greetings!

> Diagnosed w/ PCa in Jan '99. Gleason 7. PSA of 1720 in January, 2.9 in

> April, 1.6 in August and 2.6 now (Oct '99). Hormone therapy (Zoladex

> and Casodex) begun in Feb '99.

>

> Question? Does anynone have any first hand knowledge of someone(s)

> doing Hulda 's cancer treatment (parasite) program?

>

> Thanks

>

>

> ------------------------------------------------------------------------

> Visit http://cures for cancer.evangelist.net for cancer info or to unsubscribe

>

>

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  • 1 year later...
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Jerry, Thanks for your prayers and support. You have been a blessing to so

many folks, especially those in this group. You know that it is a wonderful

circle of love that keeps us supporting each other.

Oh, btw, Genny is right about me not being a good patient...I've been an RN

for 25 years and it is hard being on the other side of caregiving...I'll try

to stay in line!

God bless you,

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Hi Jerry,

Now I'll need you to tell me all about Prograf (side effects, how you really feel, etc.). It looks as though my candidacy for transplant has become positive. I'm worried and anxious about it...tell me how you felt during the process and just after surgery. Thanks, Jerry.

God bless,

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...... when I was transplanted I was extremely ill. I honestly

was very close to complete liver shutdown..I was being treated for every

complication that attends end-stage cirrhosis and when I went to surgery

I had no fear and was glad it was finally happening. The procedure was

supposed to take 10-12 hrs but actually was done in about 7 . they told

me the most difficult part was opening me back up to repair a

" bleeder " they discovered

when I got to ICU vut I don`t rmember them takng me back to surgery. I

was pretty doped up in ICU but I was transferred to floor in a day. I

was up that day and walking.The difference was like night and day. I

immediately had 100% more energy. My color was good my yellow went away

and I was more alert even with the meds. in me. Every complication I had

had disappared quickly. No more ascites, encephalopathy, jaundice,

gynomastia (?), portal hypertension and varices.Iregained my muscle mass

and body hair in a few short weeks and gained weight quickly. I weighed

only 128 post-op. My appetite came back. They even had repaired my

herniated belly button. I was anxious to be released but they had to

wait to remove two of my 3 drainagetubes. They released me after 9 days

and though I wasn`t supposed to driveI drove myself to an AA meeting

that night. People were astouned at the change. I had personally very

little post-op pain and threw ay the percocet theysent home with me. I

returned in bout 10 days to have staples remved but a lot had fallen out

on their own. I had to keep a T-tube (to drain bile) in for about 3

weeks but it too fell out by itself the day before I was to go get it

removed. at first I took maybe 6-7 diferent meds. and I don`t remember

them all but prednisone was one. ouldnt tolerate the one anti-biotic

and had to go up evey week or so for 6 weeks and inhale some by inhaler.

I was supposed to take Bactrim 3 times a week since then but noone tld

me so I never have. I was weaned from every thing but Prograf in about 6

mos. and now take it only 2mgs twice a day and have for the last 41/2

years. I have had no side effects fom it other than he aformentioned

multiple-myeloma which evidently is possible with every one but is

fairly rare.

The most likely cancer is evidently melanoma but it is a rare occurence

also and all in all a pretty good trade off.Each person is different but

these are my experiences . I know some people who still take a lot of

meds even some years after Tx. I felt really well for about a year then

I lost my energy and some other complaints . My LFTs were always fairly

good but were checked weekly for a year. Now i get them every month.

Mygasto noted my protins elevated and sent me to a hematologist where a

marrow biopsy rvealed smoldering myeloma evidently

allowed to develop because of my weak immune system . My hemoglobin

counts were low forever until strangely aft I`ve been on pred. My Mg is

alawys low and from time to time I take Slo-Mag. Prograf leaches your

magnesium evidently. my monthly LFT showed a sharp increase this last

`Sept. and the Tx. team feard rejection but a quick biopsy Dx`d AIH. It

doesn`t seem to be directly related to the Tx, but perhaps developed

through one of many, many transfusions I used to get when I had bleeding

varices. I wished you hadn`t asked me these questions because I can

ramble on about my expeiences forever... this has been a quick overview.

I am sorry for the length of this.

I hope God is as good to you as he has been to me. Take care.

Love and serenity

Jerry

Hi Jerry,

Now I'll need you to tell me all about Prograf (side effects, how you really feel, etc.). It looks as though my candidacy for transplant has become positive. I'm worried and anxious about it...tell me how you felt during the process and just after surgery. Thanks, Jerry.

God bless,

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Harper,

DOM = Dirty Old Man...LOL) I oughta know..I am married to one! Course

I could be about Jerry's reference. Jerry???

nne

> Jer -- I think we all look maaahvelous! We're alive! Even if it's

just for

> today, we're alive! It seems funny now that a year or so ago a

single little

> spider vein on one cheek seemed a problem that I really ought to

deal with.

>

> What's a DOM?

> Harper

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MOI ?....... a dirty old man? Heaven forbid !!

Harper,

DOM = Dirty Old Man...LOL) I oughta know..I am married to one! Course

I could be about Jerry's reference. Jerry???

nne

> Jer -- I think we all look maaahvelous! We're alive! Even if it's

just for

> today, we're alive! It seems funny now that a year or so ago a

single little

> spider vein on one cheek seemed a problem that I really ought to

deal with.

>

> What's a DOM?

> Harper

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Jerry,

(Desperately trying to keep a straight face here) If I was wrong, I am

so sorry ..... (holding back the laughter) I am sure you would admit

if you were....LOLOLOLOLOLOLOL

nne

> > Jer -- I think we all look maaahvelous! We're alive! Even if it's

> just for

> > today, we're alive! It seems funny now that a year or so ago a

> single little

> > spider vein on one cheek seemed a problem that I really ought to

> deal with.

> >

> > What's a DOM?

> > Harper

>

>

>

>

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nne...... actually I rather like being refered to as that " COG " *

and I`m promoting its usage to my many women friends.

Jerry

(*cute older guy)

( MYOB, Joan !)

Jerry,

(Desperately trying to keep a straight face here) If I was wrong, I am

so sorry ..... (holding back the laughter) I am sure you would admit

if you were....LOLOLOLOLOLOLOL

nne

> > Jer -- I think we all look maaahvelous! We're alive! Even if it's

> just for

> > today, we're alive! It seems funny now that a year or so ago a

> single little

> > spider vein on one cheek seemed a problem that I really ought to

> deal with.

> >

> > What's a DOM?

> > Harper

>

>

>

>

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.... re: encephalopathy.... you mean it goes away post-transplant?

Now i`ll have to use anoher excuse.

nothng but the best to you.....

Jerry :)

Oh Jerry, thank you so much for the note...it is written with such encouragement to hear of how well you felt after the tx. Now I am end stage and the hepatic encephalopathy often gets the best of me...I do look forward to being able to think again (LOL). I understand how you still have complications and must take care of yourself. I keep you in my prayers always. And I pray for the resolution of your multiple myeloma. You obviously still have a lot of work to do as you see how much we all need you and appreciate you!

God bless you Jerry,

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Harper..... DOM? Damn OK Man...

no??

HURUMMPHH...What does nne know??

Jer -- I think we all look maaahvelous! We're alive! Even if it's just for today, we're alive! It seems funny now that a year or so ago a single little spider vein on one cheek seemed a problem that I really ought to deal with.

What's a DOM?

Harper

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Jerry...

I have no argument with the designation COG....ya do look, as

Harper said, MAHHHVELOUS!

nne

> > > Jer -- I think we all look maaahvelous! We're alive! Even if

it's

> > just for

> > > today, we're alive! It seems funny now that a year or so ago a

> > single little

> > > spider vein on one cheek seemed a problem that I really ought to

> > deal with.

> > >

> > > What's a DOM?

> > > Harper

> >

> >

> >

> >

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  • 3 months later...
Guest guest

Jerry,your note was an excellence response to increase the

information base of many people who read this board. Just informing

people of the various immunosuppressants that are in common use, and

not so common use, was worth the price of admission.

Although your explanation of varicies was excellent, in my particular

case, both my Gastroenterlogist [who preformed the procedure], and my

Hepatologist gave me a different explanation why I needed the

procedure.

Before I had the Endoscopy, my Hepatologist wanted the procedure as

preventive maintence. My Gastroenterologist wanted to use drug

therapy [beta blocker rather than an ACE inhibitor]. After the

Endoscopy, my Gastroenterologist wasn't in any hurry to perform the

banding procedure, but my Hepatologist saw an urgent need, and wrote

a letter to state that urgency.

Personally, I would rather not have the procedure because they use a

narcotic to put me to sleep, and my experience is that after ever

shot of a narcotic, I lose a few more memory cells. I have yet to

come out of a medical procedure feeling smarter with an improved

memory.

With respects to your comments about Milk thistle, all the medical

studies are German in origin. Is it a cure? No, and I have never

read a statement that it was. The leading practioner of Homopathic

Medicine is Dr. Weil, MD [Harvard Medical School]. In his

book, Natural Health, Natural Medicine, page 306, he makes this

statement:

" Take extracts of the seeds of milk thistle (Silybum marianum. This

herbal remedy is nontoxic, and European research shows that it

stimulates regeneration of liver cells and protects them from toxic

injury. "

Although I agree with a lot that he says, he does recommend ginkgo

biloba for memory improvement. I can not agree with that

recommendation, since ginkgo biloba will reduce your platelet count,

as will ginger, and garlic.

As I was taking out the indents in your note, and reading about the

various immunosuppressants, one other thought had occurred to me.

With respects to my own Autoimmune condition, I know that it is

caused by Myasthenia Gravis. There is no known specific cause for the

disease, or, which organ is producing the excessive antibodies.

Since the medical profession doesn't know the origin of the excessive

antibodies, there can be no cure.

My doctors have told me that the antibodies have eaten away 2/3 of my

liver, where I have only 1/3 left [it's buried under my right breast

bone, and is very difficult to observe by ultrasound].

I take Prograf to control my Myasthenia Gavis, but at the same time,

it has proven to be an excellent immunosuppressant for my liver

problems. With respects to Prograf, there are published medical

studies that in a partial liver transplant, that Prograf has been

effective in the regeneration of the donor's liver.

In another published medical study, Prograf has been shown to be

effective in supressing Natural Killer cells. I believe that the

good and the bad about Natural Killer cells, is that Natural Killer

cells may be the reason why my autoimmune system is running wild.

The bad is that if you have cancer, you need Natural Killer cells to

fight the cancer cells.

With respects to Prograf causing Renal damage, that statement is

probably true especially where the patients has prior history of

renal problems. I've had a consultation with a Nephrologist [Kidney

specialist] this year, and after 18 months on Prograf, the doctor saw

no indication of renal problems. But he did give me a lot of very

good advice on eating habits. For example, the kidney needs protein

to function normally. Too much protein will overwork the liver.

Therefore, the ideal amount of protein is 90 grams a day. [i don't

know what 90 grams looks like. I think that you have to read the

label.] Keep drinking the 64 oz of filtered water.

I know that post transplant patients are taking a whole lot more

Prograf than I am [i take 2 mg a day]. I think that a post

transplant patient can be taking as much as 10 mg a day. My

Nephrologist did agree that at a 2 mg dose of Prograf, there was low

risk of renal damage.

Jerry, you have a lot of good information, and I certainly hope that

everyone is reading what you are saying, and asking questions if they

have any.

My regards to you, too.

Ed

====================================================================

> Ed...... I`m not really sure what point you are making by sending

me a refresher course on certain liver conditions that I`m already

very familiar with... The purpose of my note was to answer the

question you posed on why we continue to let doctors prescribe us

prednisone instead of other immunosupressants because you think there

may be a greater risk (HBP, incrased glucose levels, etc) ....

1st... to reitterate.. medicine is practiced on a risk vs. benefit

program.....

2nd the prednisone is not given as a immuno per se but rather to

control the inflammation that has resulted once the inflammation has

abated then an immuno is started, particularly Imuran, and the

prednisone is slowly weaned from ones system (because of undesirable

side effects) The immunosuppresant (imuran) tries to supress the

development of attacking cells antibodies) that are manufactured in

the bone marrow..... hence we see lower wbc and higher prothombin

times (lower platelets) in our cbcs.

Other immunos such as cyclosporine and Prograf (tacrolimus) work

differently, have thier own side effects, (gingivitis, kidney failure

and so on) and are seen mainly as experimental to some respect except

by certain advocates.

6MP is basically the same structurally as imuran (azathioprine),

Cytoxan is another immuno that has been tried. The idea of the

immunos is to get you off prednisone but in some if not most cases

one must take prednisone in some dosage for the rest of ones life

or the result maybe a flare-up.

(esophageal or gastric) varices occur when the liver becomes so

damaged that portal vein blood (bringing blood to the liver so it can

do its stuff) is blocked sufficiently as to cause a back up with the

blood going into the small vessels in your esophagus or stomach. The

build up causes these fragile vessels to swell and perhaps start

leaking or burst.... so the " trigger " is known. Standard treatment

depends a lot on the doctors choice.... you may be given beta-

blockers to slow down the flow of systemic blood, ... some opt for

sclerotherapy and others for banding... a more serious approach is

installation of a shunt or the newer TIPS procedure.... each has

their own level of danger as you pointed out mortality can be high.

High blood pressure comes in many forms and the mere presence of HBP

doesn`t mean that you will develop varices.... varices are a

complication of " portal hypertension " which is caused by a severly

damaged liver.... that`s why many of those with AIH may never develop

varices as long as it is maintained by pred and imuran even though

the pred may give rise to high blood pressure.......benefit-risk.

I`ll stand by my statement that the benefit of herbal medicine is

touted by herbalists interested in selling herbs and is not endorsed

by the medical profession. If you carefully read the resulting

conclusion ...those benefitting most were those with alcoholic

cirrhosis and Childs A.

Cirrhosis itself is untreatable.... and what happens is that the

CAUSE of the cirrhosis is treated. Childs A is a relatively minor

form of cirrhosis and if the underlying cause is treated then it may

not progress past Childs A. The treatment for alcoholic cirrhosis is

the abstinence from alcohol... hence the progression is stopped.

Alcoholic cirrhosis takes a long time to develop into end stage. I

guarantee if one continues to drink it doesn`t matter how much

silymarin he ingests his liver will eventually fail. Those in the

childs A group also had their causes treated by other things than

just milkthistle. The researchers themselves state in thier

conclusion that... " as the effect was more pronounced in alcohoic

cirrhosis, the interrelation of patterns of alcohol consumption and

of drug treatment affecting survival must be addressed by FUTURE

STUDIES. "

I repeat there has been no conclusive evidence as to milkthistle as a

cure for liver diseases... I`ve been aware of milkthistle for more

than 20 yrs. and I`ve never had an MD prescribe it or suggest it and

I`ve asked about it. It seems to me that if it were all that

herbalists say it is ,..then the medical profession would be using it

in place of other scientifically researched drugs. Most herbs seem to

work best on people who are already healthy and some herbs are

definitly bad for you.

>

> respectfully,

> Jerry

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  • 1 year later...

,Ruth, H. et al...... I've posted a couple times this week but

I think they we all web sites pertaining to somethings someone asked

about.....

Last week my mother got extremely ill with a stomach virus, then my

sister who was in town for thanksgiving got it then my brother and his 2

boys, but Friday nite saturday a.m. I got it. The others except mom were

over it in 18 hrs. but mine hung on. I was as sick as I'd been in

years.....I eliminated so much stuf I lost 10 pounds or more. My ribs

hurt from retching so much and the diarhea was intense. Late mom asked

why she and I had been so sick and I told because she was old and I'm

imunosuppresed. We were really a sorry pair.Didn't eat for 3 days and

then soup. Later my youngest daughter said eveyone else here for

thanksgiving got it too, except her. My other 3 daughters, their

husbands and my grand kids but it only lasted 12-18 hours. Soooo I was

off the compute for a while, my mail box was jamed and I tried to read

them al but had little time to write. Then didn't read the mail

yesterday because I was too tired and tonite my box was crammed again

and I'm trying to read them all now.

I really appreciate your concern but I'm too mean to die and I very

rarely complain about my health cause it doesn't make me better. I like

to stay positive....worrying is counter productive cause I have no

control over the future.....that's God's business.

Anyway I'm still here and Harper can take up my slack, she's a hell of a

lot smarter than I, anyway. So I'll start bugging youse all again soon

with my internet finds.

Sylvia...you are old. tsk, tsk. I won't be 60 till March if I live that

long.

I love all you guys.. :)

jerry

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Hi Jerry - Good to have you back on-line!Although I'm a bit of a lurker, I

really appreciate your wit & humour. Gld your recovering, one hell of a

thing to go thru.

Regards Jan

Re: [ ] Re: To Jerry

> ,Ruth, H. et al...... I've posted a couple times this week but

> I think they we all web sites pertaining to somethings someone asked

> about.....

> Last week my mother got extremely ill with a stomach virus, then my

> sister who was in town for thanksgiving got it then my brother and his 2

> boys, but Friday nite saturday a.m. I got it. The others except mom were

> over it in 18 hrs. but mine hung on. I was as sick as I'd been in

> years.....I eliminated so much stuf I lost 10 pounds or more. My ribs

> hurt from retching so much and the diarhea was intense. Late mom asked

> why she and I had been so sick and I told because she was old and I'm

> imunosuppresed. We were really a sorry pair.Didn't eat for 3 days and

> then soup. Later my youngest daughter said eveyone else here for

> thanksgiving got it too, except her. My other 3 daughters, their

> husbands and my grand kids but it only lasted 12-18 hours. Soooo I was

> off the compute for a while, my mail box was jamed and I tried to read

> them al but had little time to write. Then didn't read the mail

> yesterday because I was too tired and tonite my box was crammed again

> and I'm trying to read them all now.

> I really appreciate your concern but I'm too mean to die and I very

> rarely complain about my health cause it doesn't make me better. I like

> to stay positive....worrying is counter productive cause I have no

> control over the future.....that's God's business.

> Anyway I'm still here and Harper can take up my slack, she's a hell of a

> lot smarter than I, anyway. So I'll start bugging youse all again soon

> with my internet finds.

> Sylvia...you are old. tsk, tsk. I won't be 60 till March if I live that

> long.

> I love all you guys.. :)

> jerry

>

>

>

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Worrying about others is truly a Godly trait and all should share it.

I was kidding about that Norfolk?? virus today and was complaing I got

it and didn't even get to go on a cruise.

jerry

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Jerry, First of all, I am glad you are too mean to die! I am too stubborn to die...so my kids will just have to put up with me!! I am really glad you are feeling better and sorry all of your family were sick. Not fun!:(

Debbie, I hope you had a wonderful birthday!!!! (my daughters was yesterday the 7th)..Debbie I would sing HAPPY BIRTHDAY to you like Cheryl did; BUT my dogs would start howling!! May you have many, many more!!

Love, Beckie

Dave <teamcourage@...> wrote:

there is auper nasty flue going around that the flue viruss wont touchgefox@... wrote:> ,Ruth, H. et al...... I've posted a couple times this week> but> I think they we all web sites pertaining to somethings someone asked> about.....> Last week my mother got extremely ill with a stomach virus, then my> sister who was in town for thanksgiving got it then my brother and his> 2> boys, but Friday nite saturday a.m. I got it. The others except mom> were> over it in 18 hrs. but mine hung on. I was as sick as I'd been in> years.....I eliminated so much stuf I lost 10 pounds or more. My ribs> hurt from retching so much and the diarhea was intense. Late mom asked>> why she and I had been so sick and I told because she was old and I'm> imunosuppresed. We were really a sorry pair.Didn't eat for 3 days and> then soup. Later my youngest daughter said eveyone else here for> thanksgiving got it too, except her. My other 3 daughters, their> husbands and my grand kids but it only lasted 12-18 hours. Soooo I was>> off the compute for a while, my mail box was jamed and I tried to read>> them al but had little time to write. Then didn't read the mail> yesterday because I was too tired and tonite my box was crammed again> and I'm trying to read them all now.> I really appreciate your concern but I'm too mean to die and I very> rarely complain about my health cause it doesn't make me better. I> like> to stay positive....worrying is counter productive cause I have no> control over the future.....that's God's business.> Anyway I'm still here and Harper can take up my slack, she's a hell of> a> lot smarter than I, anyway. So I'll start bugging youse all again soon>> with my internet finds.> Sylvia...you are old. tsk, tsk. I won't be 60 till March if I live> that> long.> I love all you guys.. :)> jerry>>>

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  • 2 months later...

Jerry - I want to thank you for giving me the boot in the butt that I needed to get back to reality. I am sorry that I spoiled your night, for some reason everyone seems to vent to you. I hope you have big shoulders, you are a great guy and understand

people more than anyone I know. Yes, I had my pity party but then I realized I had

better shake it if for no one but myself. My adult and marriaed children don't seem to understand what liver disease is all about, if your not pukeing, running a fever or on the john 24/7 your not sick, they have to see something, if they don't it's all in your

head. My husband is very good to me and takes care of me but is not an emotional or shower of feelings, I don't know how we have been married 40 years last Dec. lst.

Because I come from a large family that is always there for everyone, your Irish how

would you like italian/polish? You know the huggy kissy kind? He has mellowed

through the years but I never thought how much this silently affects him because he dosen't want me to be scared or afraid. Thank you foor the reality check Jerry it took me a few day's to dwell on it I still have a very bloated stomach and you know what the hell with it put on sweats and a baggy tee shirt and go on with my life. The pain

is still there but tolerable but I started to do things that I didn't think I had the strength for sure I get tired but I get it done. Jerry, you are agreat friend and I

love you to pieces, thank you ever so much. Love & Hug's,

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...there is absolutely no way you could ruin my evening, unless you

got very deathly sick or something.You can rant and rave and vent all

you want. I'll listen and help if I can. Sorry about you kids and huby

not understanding thats why we are all here. As you know I belong to

A.A..It is thee that I am surrounded by people who understand, because

they,ve all been there. Sometimes we refer to those who don't have our

disease as " earth people " and we don't expect them to understand (nor do

we care anymor) We have each other and that keeps us sober. That is what

we have here in this group..sometimes i come off heavy, but it is from

my othe support group that I get tis. Our disease there was predicated

on slf pity so sometimes we kick someones ass when they start to fall

into it, because it will lead us back to te bottle. I guess I forget

sometimes which group I'm talking to and my tactics intermingle. In A.A.

I have learne tat the best way to stay out of that trap is to turn my

energy towards helping another....when you help another, your own

problems disappear and you feel good bout yourself. We call it getting

out of your self. Ina prayer we say as we take our 3rd step we ask God

to " relieve us from bondage of self " I love those word and ask Him

eveyday to do this for me.

In this group here we do the same by supporting one another. When I said

what other people think of us is none of our business..that to is an

A.A. saying...it means once we start doing things just to be liked or to

please others we are slipping back into that bondage of self. We have

stoppeed doing Gods will....which is to take care of others above

ourself ( I include all God's creatures, personally, we are , after

all, His caretakers for this earth) Since I'm on the subject... I am of

the firm belief that anyone... not just drunks...can lead a much

better.healthier life by reading the book of Alcoholics Anonymous

(the " big book " ) and practice the principlews it lays down. It is more

than a guide to sobriety but a guide to better way of life.

Thank you so much for your very kind words...know that I love you too.

God has told me this is His will for me and I find it an easy task.

Human beings are among His greatest creations. and each of us has a

little of Him in us and little of each other.

Keep on keeping on ...everything is going to be just alright.

my love jerry

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  • 4 weeks later...
Guest guest

Jerry = Sorry I missed your birthday by a day, but Happy Birthday Sweetheart!!!! you

are such a good man to all of us woman, don"t feel bad turning 60 I will catch up with you in two years!!! Love & Hug's, H.

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....you only missed me by an hour or less... The fact that you sent

me greetings and are my friend is all that one can ask . Thank you . I

don't feel too bad turning 60 at least not twice as bad as I did turning

30. You will be 60 too soon so try lying about your age now and maybe

you can put it off. I hope this evening finds you well and comforable. I

am sending you this with my love and thanks.

love jerry

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Happy Birthday Jerry!

Are you legal yet? Hope you had a great one!

Love,

Re: [ ] To Jerry

....you only missed me by an hour or less... The fact that you sent

me greetings and are my friend is all that one can ask . Thank you . I

don't feel too bad turning 60 at least not twice as bad as I did turning

30. You will be 60 too soon so try lying about your age now and maybe

you can put it off. I hope this evening finds you well and comforable. I

am sending you this with my love and thanks.

love jerry

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Jerry, Leave those 16 yo alone, I may be retired but I still have my handcuffs. oohh kinky. terri

gefox@... wrote:

Thanks ...... I'm legal as long as I don't hit on 16 yr. oldgirls...love jerry

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