RE: **Genevieve** Upsetting Update

[Guest guest]

>>

and your hands to hold as I go through this

Genevieve,

I have arthritis in both

of my hands, but they can still do a good day of hard work. And…..they are all yours for the

next year. They can hold your hands

whenever you need them and during the times you don’t – they will

be folded in prayer for you. You

will never be alone! For we are - together

in the fight, whatever it takes.

Barb two hands in Texas for Genevieve

,___

[Guest guest]

Genevieve,

I do add my hands to all the other extended hands of our group, for your firm support. It is too much to take, in such a brief of time, but it is good that you are being very realistic about it. Do try your best to take one day by faith at a time, and not to think too much about how the year is going to go. You have got some very good team of specialists, around you.

Prayers and hopeful wishes, i do send your way.

Subject: Upsetting Update on MeTo: Date: Thursday, October 23, 2008, 3:19 AM

Dear Friends,Yesterday afternoon we got the test results back of a genetic test called the `FISH' test that was sent out after my September appointment and stent removal. The test is a biopsy and was sent to Mayo by one of my doctors, and wires got crossed; somehow my hepatologist never got the message that this test was completed and sent out. He ordered this test again this Monday, after my most recent ERCP and stent placement, and got a call today asking if he really wanted to do this test over. At this point he was made aware that a `FISH' test had already been completed on me, and the results were abnormal.Now this part I may be wrong about, so bear with me, it's just my understanding: This test shows the morphology of chromosomal abnormalities, as cells turn from benign to cancerous. My cells in this stubborn strictured area that have been a pain in my side (HA) for the last

year, are on their way to becoming cancerous. One could say this is similar to when I had my colon removed; high-grade dysplasia throughout the colon indicated that cells were in the last stages of turning from `abnormal' to `cancerous'; that's what is happening in this strictured area in my bile duct right now. This has been slightly suspected for some time, but none of my doctors—even until 2 p.m. yesterday—truly thought that my situation was indicative of cholangiocarcinoma; but we've caught it before it became full-blown CCa.My hospital, Washington University Medical Center and -Jewish Hospital in St. Louis is one of three hospitals that participates in an extremely strict protocol for this exact type of situation—Mayo Clinic and University of Pittsburgh Medical Center being the other two—and given lots of confounding factors, I am a perfect candidate to participate in this

protocol. We already have a plan in place, as we must move quickly with CCa.Within the next two to three weeks I will go in for an exploratory laproscopic surgery to be certain that there is no visible cancer anywhere in my abdomen, except for the strictured area. We will also biopsy the surrounding lymph nodes, and expect these studies to come back clean. I will then see a fertility specialist to harvest and freeze my eggs to preserve future fertility. As soon as this is completed I will undergo chemotherapy and radiation treatments that are very specialized and somewhat localized to the bile ducts. When these are completed, another exploratory surgery will take place to again confirm that there is no other cancer.When all of this has been completed, I will be listed for liver transplant with top priority (automatic additional points to give me a high MELD score, based on the results of

the FISH test and the procedures I will be going through). We expect that a liver will then become available to me within three to six months time, and I will undergo a full traditional liver transplantation with arterial reconstruction.The risks are many, the benefit is life. As you all know, cholangiocarcinoma can be very deadly—it is a boogeyman, as my hepatologist says. It jumps out of nowhere for most people, and those of us with PSC have the `benefit' of knowing that we need to watch for this boogeyman. Well, we've found him, in my case.I want to tell you more, but I don't know more at this point. I didn't come home with any paperwork explaining anything to me, I am just expecting `a call' from `someone at WashU' `sometime soon' to get this process started. This all happened at 4 o'clock yesterday afternoon. My hepatologist and surgeon sat down with my husband , myself, and

my Dad (an M.D.) and explained it all—mostly to my Dad, in very technical terms, and then dumbed it down a little bit for and myself—but then my hep had to leave around 5:30 to pick up his daughter so we had to cut the session short. They had already added my name as to the program for this protocol before talking to me about it, knowing the answer would be yes. I hope to know more very soon.For now, I am scared shitless. I have only been processing this since about three o'clock yesterday afternoon, and I'm already way out of tears. I'm on lots of drugs right now to even me out, or I might be having a nervous breakdown; for now I'm just numb. I need your support. Please, anyone who has been through this: I need your comments and advice about this process, and your hands to hold as I go through this. My doctors said this will be a horrible year for me, and to remember that my health,

family, and friends are ALL that matter right now; I can pick everything else back up in a year, when this is all just a very bad dream.Thank you for your support,GenevieveUC 1983, J-Pouch 1999, PSC 12/07

[Guest guest]

Genevieve,

I do add my hands to all the other extended hands of our group, for your firm support. It is too much to take, in such a brief of time, but it is good that you are being very realistic about it. Do try your best to take one day by faith at a time, and not to think too much about how the year is going to go. You have got some very good team of specialists, around you.

Prayers and hopeful wishes, i do send your way.

Subject: Upsetting Update on MeTo: Date: Thursday, October 23, 2008, 3:19 AM

Dear Friends,Yesterday afternoon we got the test results back of a genetic test called the `FISH' test that was sent out after my September appointment and stent removal. The test is a biopsy and was sent to Mayo by one of my doctors, and wires got crossed; somehow my hepatologist never got the message that this test was completed and sent out. He ordered this test again this Monday, after my most recent ERCP and stent placement, and got a call today asking if he really wanted to do this test over. At this point he was made aware that a `FISH' test had already been completed on me, and the results were abnormal.Now this part I may be wrong about, so bear with me, it's just my understanding: This test shows the morphology of chromosomal abnormalities, as cells turn from benign to cancerous. My cells in this stubborn strictured area that have been a pain in my side (HA) for the last

year, are on their way to becoming cancerous. One could say this is similar to when I had my colon removed; high-grade dysplasia throughout the colon indicated that cells were in the last stages of turning from `abnormal' to `cancerous'; that's what is happening in this strictured area in my bile duct right now. This has been slightly suspected for some time, but none of my doctors—even until 2 p.m. yesterday—truly thought that my situation was indicative of cholangiocarcinoma; but we've caught it before it became full-blown CCa.My hospital, Washington University Medical Center and -Jewish Hospital in St. Louis is one of three hospitals that participates in an extremely strict protocol for this exact type of situation—Mayo Clinic and University of Pittsburgh Medical Center being the other two—and given lots of confounding factors, I am a perfect candidate to participate in this

protocol. We already have a plan in place, as we must move quickly with CCa.Within the next two to three weeks I will go in for an exploratory laproscopic surgery to be certain that there is no visible cancer anywhere in my abdomen, except for the strictured area. We will also biopsy the surrounding lymph nodes, and expect these studies to come back clean. I will then see a fertility specialist to harvest and freeze my eggs to preserve future fertility. As soon as this is completed I will undergo chemotherapy and radiation treatments that are very specialized and somewhat localized to the bile ducts. When these are completed, another exploratory surgery will take place to again confirm that there is no other cancer.When all of this has been completed, I will be listed for liver transplant with top priority (automatic additional points to give me a high MELD score, based on the results of

the FISH test and the procedures I will be going through). We expect that a liver will then become available to me within three to six months time, and I will undergo a full traditional liver transplantation with arterial reconstruction.The risks are many, the benefit is life. As you all know, cholangiocarcinoma can be very deadly—it is a boogeyman, as my hepatologist says. It jumps out of nowhere for most people, and those of us with PSC have the `benefit' of knowing that we need to watch for this boogeyman. Well, we've found him, in my case.I want to tell you more, but I don't know more at this point. I didn't come home with any paperwork explaining anything to me, I am just expecting `a call' from `someone at WashU' `sometime soon' to get this process started. This all happened at 4 o'clock yesterday afternoon. My hepatologist and surgeon sat down with my husband , myself, and

my Dad (an M.D.) and explained it all—mostly to my Dad, in very technical terms, and then dumbed it down a little bit for and myself—but then my hep had to leave around 5:30 to pick up his daughter so we had to cut the session short. They had already added my name as to the program for this protocol before talking to me about it, knowing the answer would be yes. I hope to know more very soon.For now, I am scared shitless. I have only been processing this since about three o'clock yesterday afternoon, and I'm already way out of tears. I'm on lots of drugs right now to even me out, or I might be having a nervous breakdown; for now I'm just numb. I need your support. Please, anyone who has been through this: I need your comments and advice about this process, and your hands to hold as I go through this. My doctors said this will be a horrible year for me, and to remember that my health,

family, and friends are ALL that matter right now; I can pick everything else back up in a year, when this is all just a very bad dream.Thank you for your support,GenevieveUC 1983, J-Pouch 1999, PSC 12/07