Re: I feel like I'm a ping pong ball..................

[Guest guest]

CJ,Sorry to hear about your treatment. The best place to be treated for CCA is the Mayo Clinic. I think it's just very recently that other facilities have started following the Mayo Clinic protocol for CCA. You can probably expect some big hiccups at other locations besides the Mayo Clinic.As to the ultrasound, it's a good thing if that looks good. I think it's an indication that the CCA was found early, and is thus subject to treatment. Most people with CCA are not candidates for treatment. I know it's hard to think of yourself as lucky with the diagnosis you have and what you are about to go through, but you are indeed lucky if you can be treated for CCA. Most people aren't that lucky.Please continue to keep us posted with what is going on with you.Marie

To: From: clackie@...Date: Sat, 27 Sep 2008 05:35:00 +0000Subject: I feel like I'm a ping pong ball..................

Here I am again asking for your opinions on my case again....

I was told 3 wks ago that I had CCA and had to go on Chemo and

Radiation for 6 weeks and then have surgery to be sure no cancer

outside the liver or in the lymph glands.....

Well, I went to UW Madison hospital and clinics yesterday and first

off saw the Radiologist oncologist, he came in the room about an hour

after I was put in the room and he acts like he has no idea who I am

or what I am there for....then his student gives him a piece of paper

and he starts talking in circles...I finally looked at him and

said "are you telling me you are not going to do radiation on me?"

and he says Yes based on the results of this test I have in my hand

you do not have cancer and not saying in a few weeks or months that

you may have it....but right now you do not.....I was

dumbfounded.....so I left him and went on to my oncologist and he

say "Based on this paper which I just read for the time today, I

can't give you Chemo" I was so happy and suprised I could not

believe my luck....I thought, boy the power of prayers are really

working for me today.....

I was to see a surgeon next and was told to go to the tx department

and see him and the oncologist would call and talk with him....so off

I go and I'm sitting in the room and my Hepatologist walks by and

stops in to say hi and says how are you feeling and I told him I was

confussed, then he asked why and I told him what the radiologist &

oncologist told me so he starts to look at my file on the

computer...I said I think this is what you are looking for and showed

him my results of the test that came back from Mayo's...he said he

was looking at the cytology part and that was telling him we needed

to do this tx with the radiation and chemo and get me transplanted

ASAP......well, he leaves and in comes the surgeon and he tells me he

goes along with my hep and thinks we should get going ASAP while I

still had a window to cure this......

Then I had a ultrasound down my throat and they checked my organs and

lymph nodes and all was great there.....they could see the PSC and

the strictures but lymph glands were fine and all the organs were

fine....GOOD NEWs. I leave the hospital kinda in a state of

shock......then tonight I get a call from my cordinator and he says

that the oncologist said he would go against his training and do the

Chemo as they had a meeting today and my Hepatologist convinced him

why this should be done now.....Radiologist did not show up for the

meeting so the surgeon, hepatologist and the oncologist are all going

to go to him next week and convince him this needs to be done

now......

All I can say is I am drained and don't know what to think or feel....

Anyone ever go through anything like this.....

CJ

psc 2008

Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now

[Guest guest]

I feel for you, Please hang in there and keep us posted.

Dawn

In , " cjlackie " wrote:

>

> Here I am again asking for your opinions on my case again....

>

> I was told 3 wks ago that I had CCA and had to go on Chemo and

> Radiation for 6 weeks and then have surgery to be sure no cancer

> outside the liver or in the lymph glands.....

>

> Well, I went to UW Madison hospital and clinics yesterday and first

> off saw the Radiologist oncologist, he came in the room about an

hour

> after I was put in the room and he acts like he has no idea who I

am

> or what I am there for....then his student gives him a piece of

paper

> and he starts talking in circles...I finally looked at him and

> said " are you telling me you are not going to do radiation on me? "

> and he says Yes based on the results of this test I have in my hand

> you do not have cancer and not saying in a few weeks or months that

> you may have it....but right now you do not.....I was

> dumbfounded.....so I left him and went on to my oncologist and he

> say " Based on this paper which I just read for the time today, I

> can't give you Chemo " I was so happy and suprised I could not

> believe my luck....I thought, boy the power of prayers are really

> working for me today.....

>

> I was to see a surgeon next and was told to go to the tx department

> and see him and the oncologist would call and talk with him....so

off

> I go and I'm sitting in the room and my Hepatologist walks by and

> stops in to say hi and says how are you feeling and I told him I

was

> confussed, then he asked why and I told him what the radiologist &

> oncologist told me so he starts to look at my file on the

> computer...I said I think this is what you are looking for and

showed

> him my results of the test that came back from Mayo's...he said he

> was looking at the cytology part and that was telling him we needed

> to do this tx with the radiation and chemo and get me transplanted

> ASAP......well, he leaves and in comes the surgeon and he tells me

he

> goes along with my hep and thinks we should get going ASAP while I

> still had a window to cure this......

>

> Then I had a ultrasound down my throat and they checked my organs

and

> lymph nodes and all was great there.....they could see the PSC and

> the strictures but lymph glands were fine and all the organs were

> fine....GOOD NEWs. I leave the hospital kinda in a state of

> shock......then tonight I get a call from my cordinator and he says

> that the oncologist said he would go against his training and do

the

> Chemo as they had a meeting today and my Hepatologist convinced him

> why this should be done now.....Radiologist did not show up for the

> meeting so the surgeon, hepatologist and the oncologist are all

going

> to go to him next week and convince him this needs to be done

> now......

>

> All I can say is I am drained and don't know what to think or

feel....

> Anyone ever go through anything like this.....

>

> CJ

> psc 2008

>

[Guest guest]

This is bizarre to say the least. Since testing was done at Mayo,

could someone familiar with your case weigh in on this? This is

serious and it seems that your doctors are not in agreement so I would

ask for another opinion before doing anything and I think that Mayo

should be asked.

Penny

>

> Here I am again asking for your opinions on my case again....

>

> I was told 3 wks ago that I had CCA and had to go on Chemo and

> Radiation for 6 weeks and then have surgery to be sure no cancer

> outside the liver or in the lymph glands.....

..then tonight I get a call from my cordinator and he says

> that the oncologist said he would go against his training and do the

> Chemo as they had a meeting today and my Hepatologist convinced him

> why this should be done now.....Radiologist did not show up for the

> meeting so the surgeon, hepatologist and the oncologist are all going

> to go to him next week and convince him this needs to be done

> now......

>

> All I can say is I am drained and don't know what to think or feel....

> Anyone ever go through anything like this.....

>

> CJ

> psc 2008

>

[Guest guest]

Thank you Penny for your response.....I think I have decided to go to

Mayo but it is going to depend on the new CA19-9 and how soon I can

get into Mayo...Don't want to waste to much time.....been just about

a month now since the test was taken....this scares me...

CJ

> >

> > Here I am again asking for your opinions on my case again....

> >

> > I was told 3 wks ago that I had CCA and had to go on Chemo and

> > Radiation for 6 weeks and then have surgery to be sure no cancer

> > outside the liver or in the lymph glands.....

> .then tonight I get a call from my cordinator and he says

> > that the oncologist said he would go against his training and do

the

> > Chemo as they had a meeting today and my Hepatologist convinced

him

> > why this should be done now.....Radiologist did not show up for

the

> > meeting so the surgeon, hepatologist and the oncologist are all

going

> > to go to him next week and convince him this needs to be done

> > now......

> >

> > All I can say is I am drained and don't know what to think or

feel....

> > Anyone ever go through anything like this.....

> >

> > CJ

> > psc 2008

> >

>

[Guest guest]

Thank you Penny for your response.....I think I have decided to go to

Mayo but it is going to depend on the new CA19-9 and how soon I can

get into Mayo...Don't want to waste to much time.....been just about

a month now since the test was taken....this scares me...

CJ

> >

> > Here I am again asking for your opinions on my case again....

> >

> > I was told 3 wks ago that I had CCA and had to go on Chemo and

> > Radiation for 6 weeks and then have surgery to be sure no cancer

> > outside the liver or in the lymph glands.....

> .then tonight I get a call from my cordinator and he says

> > that the oncologist said he would go against his training and do

the

> > Chemo as they had a meeting today and my Hepatologist convinced

him

> > why this should be done now.....Radiologist did not show up for

the

> > meeting so the surgeon, hepatologist and the oncologist are all

going

> > to go to him next week and convince him this needs to be done

> > now......

> >

> > All I can say is I am drained and don't know what to think or

feel....

> > Anyone ever go through anything like this.....

> >

> > CJ

> > psc 2008

> >

>

[Guest guest]

Thank you, Dawn

CJ

..com, " mdwblaze " wrote:

>

>

> I feel for you, Please hang in there and keep us posted.

>

> Dawn

>

> In , " cjlackie " wrote:

> >

> > Here I am again asking for your opinions on my case again....

> >

> > I was told 3 wks ago that I had CCA and had to go on Chemo and

> > Radiation for 6 weeks and then have surgery to be sure no cancer

> > outside the liver or in the lymph glands.....

> >

> > Well, I went to UW Madison hospital and clinics yesterday and

first

> > off saw the Radiologist oncologist, he came in the room about an

> hour

> > after I was put in the room and he acts like he has no idea who I

> am

> > or what I am there for....then his student gives him a piece of

> paper

> > and he starts talking in circles...I finally looked at him and

> > said " are you telling me you are not going to do radiation on

me? "

> > and he says Yes based on the results of this test I have in my

hand

> > you do not have cancer and not saying in a few weeks or months

that

> > you may have it....but right now you do not.....I was

> > dumbfounded.....so I left him and went on to my oncologist and he

> > say " Based on this paper which I just read for the time today, I

> > can't give you Chemo " I was so happy and suprised I could not

> > believe my luck....I thought, boy the power of prayers are really

> > working for me today.....

> >

> > I was to see a surgeon next and was told to go to the tx

department

> > and see him and the oncologist would call and talk with him....so

> off

> > I go and I'm sitting in the room and my Hepatologist walks by and

> > stops in to say hi and says how are you feeling and I told him I

> was

> > confussed, then he asked why and I told him what the radiologist

&

> > oncologist told me so he starts to look at my file on the

> > computer...I said I think this is what you are looking for and

> showed

> > him my results of the test that came back from Mayo's...he said

he

> > was looking at the cytology part and that was telling him we

needed

> > to do this tx with the radiation and chemo and get me

transplanted

> > ASAP......well, he leaves and in comes the surgeon and he tells

me

> he

> > goes along with my hep and thinks we should get going ASAP while

I

> > still had a window to cure this......

> >

> > Then I had a ultrasound down my throat and they checked my organs

> and

> > lymph nodes and all was great there.....they could see the PSC

and

> > the strictures but lymph glands were fine and all the organs were

> > fine....GOOD NEWs. I leave the hospital kinda in a state of

> > shock......then tonight I get a call from my cordinator and he

says

> > that the oncologist said he would go against his training and do

> the

> > Chemo as they had a meeting today and my Hepatologist convinced

him

> > why this should be done now.....Radiologist did not show up for

the

> > meeting so the surgeon, hepatologist and the oncologist are all

> going

> > to go to him next week and convince him this needs to be done

> > now......

> >

> > All I can say is I am drained and don't know what to think or

> feel....

> > Anyone ever go through anything like this.....

> >

> > CJ

> > psc 2008

> >

>

[Guest guest]

Thank you Marie for your response....think I am going to try to go to

Mayo's but going to depend on how soon I can get in and what the new

CA19-9 reads...this is scary

CJ

>

>

> CJ,

>

> Sorry to hear about your treatment. The best place to be treated

for CCA is the Mayo Clinic. I think it's just very recently that

other facilities have started following the Mayo Clinic protocol for

CCA. You can probably expect some big hiccups at other locations

besides the Mayo Clinic.

>

> As to the ultrasound, it's a good thing if that looks good. I

think it's an indication that the CCA was found early, and is thus

subject to treatment. Most people with CCA are not candidates for

treatment. I know it's hard to think of yourself as lucky with the

diagnosis you have and what you are about to go through, but you are

indeed lucky if you can be treated for CCA. Most people aren't that

lucky.

>

> Please continue to keep us posted with what is going on with you.

>

> Marie

>

>

>

>

>

> To:

> From: clackie@...

> Date: Sat, 27 Sep 2008 05:35:00 +0000

> Subject: I feel like I'm a ping pong

ball..................

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Here I am again asking for your opinions on my case

again....

>

>

>

> I was told 3 wks ago that I had CCA and had to go on Chemo and

>

> Radiation for 6 weeks and then have surgery to be sure no cancer

>

> outside the liver or in the lymph glands.....

>

>

>

> Well, I went to UW Madison hospital and clinics yesterday and first

>

> off saw the Radiologist oncologist, he came in the room about an

hour

>

> after I was put in the room and he acts like he has no idea who I

am

>

> or what I am there for....then his student gives him a piece of

paper

>

> and he starts talking in circles...I finally looked at him and

>

> said " are you telling me you are not going to do radiation on me? "

>

> and he says Yes based on the results of this test I have in my hand

>

> you do not have cancer and not saying in a few weeks or months that

>

> you may have it....but right now you do not.....I was

>

> dumbfounded.....so I left him and went on to my oncologist and he

>

> say " Based on this paper which I just read for the time today, I

>

> can't give you Chemo " I was so happy and suprised I could not

>

> believe my luck....I thought, boy the power of prayers are really

>

> working for me today.....

>

>

>

> I was to see a surgeon next and was told to go to the tx department

>

> and see him and the oncologist would call and talk with him....so

off

>

> I go and I'm sitting in the room and my Hepatologist walks by and

>

> stops in to say hi and says how are you feeling and I told him I

was

>

> confussed, then he asked why and I told him what the radiologist &

>

> oncologist told me so he starts to look at my file on the

>

> computer...I said I think this is what you are looking for and

showed

>

> him my results of the test that came back from Mayo's...he said he

>

> was looking at the cytology part and that was telling him we needed

>

> to do this tx with the radiation and chemo and get me transplanted

>

> ASAP......well, he leaves and in comes the surgeon and he tells me

he

>

> goes along with my hep and thinks we should get going ASAP while I

>

> still had a window to cure this......

>

>

>

> Then I had a ultrasound down my throat and they checked my organs

and

>

> lymph nodes and all was great there.....they could see the PSC and

>

> the strictures but lymph glands were fine and all the organs were

>

> fine....GOOD NEWs. I leave the hospital kinda in a state of

>

> shock......then tonight I get a call from my cordinator and he says

>

> that the oncologist said he would go against his training and do

the

>

> Chemo as they had a meeting today and my Hepatologist convinced him

>

> why this should be done now.....Radiologist did not show up for the

>

> meeting so the surgeon, hepatologist and the oncologist are all

going

>

> to go to him next week and convince him this needs to be done

>

> now......

>

>

>

> All I can say is I am drained and don't know what to think or

feel....

>

> Anyone ever go through anything like this.....

>

>

>

> CJ

>

> psc 2008

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Want to do more with Windows Live? Learn " 10 hidden secrets " from

.

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