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

[Guest guest]

CJ,Dr. Gores at the Rochester Mayo Clinic is the one to see. He is THE leading doctor in CCA in the world. With a new diagnosis of CCA, you should get in quickly. http://mayoresearch.mayo.edu/mayo/research/staff/gores_gj.cfmHe spoke at the last PSC Conference in ville, FL, which was at the new Mayo Clinic hospital there. He seems very approachable.Marie

To: From: clackie@...Date: Sun, 28 Sep 2008 19:42:17 +0000Subject: Re: I feel like I'm a ping pong ball..................

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

.

> http://windowslive.com/connect/post/jamiethomson.spaces.live.com-

Blog-cns!550F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

>

See how Windows Mobile brings your life together—at home, work, or on the go. See Now

[Guest guest]

CJ,Dr. Gores at the Rochester Mayo Clinic is the one to see. He is THE leading doctor in CCA in the world. With a new diagnosis of CCA, you should get in quickly. http://mayoresearch.mayo.edu/mayo/research/staff/gores_gj.cfmHe spoke at the last PSC Conference in ville, FL, which was at the new Mayo Clinic hospital there. He seems very approachable.Marie

To: From: clackie@...Date: Sun, 28 Sep 2008 19:42:17 +0000Subject: Re: I feel like I'm a ping pong ball..................

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

.

> http://windowslive.com/connect/post/jamiethomson.spaces.live.com-

Blog-cns!550F681DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

>

See how Windows Mobile brings your life together—at home, work, or on the go. See Now

[Guest guest]

CJ,

I do feel sorry that you have to go thru all that. But the most important thing is that you do have a good hepatologist and that they will start your treament, very soon.

I do agree with Marie about suggesting the Mayo for CCA. Specially, doctor Gore. He is the best. I have heard that Mayo has their own unique methods and tests when it comes to CCA, that no other hospital have come to know, yet. And the earlier, the better. CA19-9, is not always an accurate measurement indication for the pesence of CCA.

W/my prayers.

Subject: Re: I feel like I'm a ping pong ball..................To: Date: Sunday, September 28, 2008, 7:42 PM

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 scaryCJ>> > 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: @ yahoogroups. com> 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 .> http://windowslive. com/connect/ post/jamiethomso n.spaces. live.com-Blog-cns!550F681DAD 532637!5295. entry?ocid= TXT_TAGLM_ WL_domore_ 092008>