Cholangio Cell Carcinoma

Hi Janie

I'll contact you in the morning...need to leave, taking Karen out to dinner. No I'm not Irish, I'm Italian, but what the heck. My last name is Vinci

 

In the meantime go to http://www.mskcc.org/mskcc/html/44.cfm

This is the Sloan Kettering Memorial Cancer Center web site.

By the way Karen was on the same antibiotics.

Talk to you in the morning

Good Night

Leonard

 

 

 

 

Good morning Janie,

I sent you a message last night, but I don't know if it went through.

This message is in response to your latest message on 3.17.09

Thank you for your kind remarks. 

I'm very pleased to to hear what your dad's oncologist had to say. This waoul be great if the chemo and the radiation shrinks the tumor.  They should wait for the tumor to shrink, they should do something to allow the bile to flow through the common bile duct...maybe when he gets to SLK they can help.

It's a real battle getting them to eat, Karen did the same, said she ate but I know she didn't...hated the drink the ensure. Her doctor layed the law down on her and told if she didn't eat he was going to force feed her through a tube...she ate and drank ensure. It really is hard for them to eat, they're hurting, there scared, nothing taste good and their mad...all of that just doesn't give them an appetite.

Karen had the same antibiotic's plus about 10 others. They want him on antibiotoc's to control bile infections. 

Janie, SLK is a very large hospital I sent you their web site last night. The site is http://www.mskcc.org/mskcc/html/44.cfm

This is the Sloan Kettering Momorial Cancer Center web site. I almost sure they have doctor's that can handle your dad's issue...not just Oncologist and Radiologist...By the way, If your dad needs any procedures in the Interventional Radiology department, There's a doctor there that helped Karen at UCSF...Doctor Ray Thornton.

I'm also sure they have a Gastroenterology Department, check out the web site.

Well, I hope everything moves in a positive direction...

You take care...

Leonard 

 

Hello, I have the same thing as your father. They put a plastic stent in me and shortly after they took out my gallbadder it plugged up, then they put in 2 metal stents [which are still in there]. I've had 9 chemo treatments [Gemzar], started those Dec, 1st once a week for 3 weeks and then 1 week off, finished them in Feb. and am now doing radiation treatments. along with chemo, this is for 6 weeks, 5 days a week. They couldn't operate on my tumor, so decide on this course. They can't make the tumor  go away but they hope to shrink it and give me some more time on this earth. If you want more information on my experience let me know. Hope things go well for your day. God Bless.

HI,

It maybe too late for my dad. He still doesnt have the stent. Now, his bilirubin is too high for them to even attempt to make another attempt. Chemo and radiation are out now. Just don't know now.

I do wish you all the best. The stent was a very important part.

 

Jane 

 

 

On 3/18/2009 Solutions wrote:

Good morning Janie,

I sent you a message last night, but I don't know if it went through.

This message is in response to your latest message on 3.17.09

Thank you for your kind remarks. 

I'm very pleased to to hear what your dad's oncologist had to say. This waoul be great if the chemo and the radiation shrinks the tumor.  They should wait for the tumor to shrink, they should do something to allow the bile to flow through the common bile duct...maybe when he gets to SLK they can help.

It's a real battle getting them to eat, Karen did the same, said she ate but I know she didn't...hated the drink the ensure. Her doctor layed the law down on her and told if she didn't eat he was going to force feed her through a tube...she ate and drank ensure. It really is hard for them to eat, they're hurting, there scared, nothing taste good and their mad...all of that just doesn't give them an appetite.

Karen had the same antibiotic's plus about 10 others. They want him on antibiotoc's to control bile infections. 

Janie, SLK is a very large hospital I sent you their web site last night. The site is http://www.mskcc.org/mskcc/html/44.cfm

This is the Sloan Kettering Momorial Cancer Center web site. I almost sure they have doctor's that can handle your dad's issue...not just Oncologist and Radiologist...By the way, If your dad needs any procedures in the Interventional Radiology department, There's a doctor there that helped Karen at UCSF...Doctor Ray Thornton.

I'm also sure they have a Gastroenterology Department, check out the web site.

Well, I hope everything moves in a positive direction...

You take care...

Leonard 

 

 

Hi Leonard,

I am sorry that I havent been around. While my dad was home, we were monitoring him and making sure that he took his meds. Anyways, we made it to the appointment. He was in pain. The doctors at Sloan went over his charts, and wondered why they gave him chemo and radiation. They said his bilirubin was very high. Anyways, he was readmitted to the hospital near Sloan. Before that he looked like he was going to pass out at anytime.  After his admittance,  he looked much better because he had been hooked up to an IV. They said that he was very dehydrated. They couldnt believe that they let him leave the other hospital like that.

Anyways, spoke with my mom today. He told her that my dad's bilirubin was too high. They can't do the stent with his levels so high, if they did, he would suffocate and die. So, the best thing they could do right now is keep him comfortable if and when his levels drop. I didnt get to talk with the doctor otherwise, I would have asked questions. My mom asked nothing, she just cried. He was asking us if we had a paper DNR or something. I was at school. I had to rush home, and we went to pick up my father's sister from the nursing home again. My father looked good though. He looked like he was improving overnight, but some say he looks peaceful and maybe prepared to make the transition. I like that he looks peaceful but I tod not want to hear about a transition except to come home.

I am very sad, but still hopeful.

Bless all of you in this fight.I hope your dad gets better.

 

On 3/20/2009 Janesi wrote:

HI,

It maybe too late for my dad. He still doesnt have the stent. Now, his bilirubin is too high for them to even attempt to make another attempt. Chemo and radiation are out now. Just don't know now.

I do wish you all the best. The stent was a very important part.

 

Jane 

 

 

Hello again. I don't know how they put your Fathers' stent in but mine was put in when they did an ERCP on me and I'm sure that's how your Dads' was put in too. The first one they put in [the plastic one] was done at St Marys Hospital in Madison, Wi. They said it would only last 4 to 6 weeks, and then the second ones were put in at Mayo Clinic in Rochester, Mn. I just finished my second week of radiation along with chemo [5-fu] which I have a picc and a pump that I have to wear 24/7 I hope and pray that your Father receives the medical attention that he deserves. God Bless.  Larry

Hi Janie,

No need to be sorry about anything...I completely understand the situation, I've been doing this for 6 years going on 20.

Yes, I was wondering why the chemo and radiation also...remember I told you chemo and radiation is not the best way to deal with bile duct cancer.

The reason the biliruban is high is because it's not flowing out of the liver, it's backing up into your dads body. remenber what I said about the color of his urine and the whites of his eyes. The urine will turn very dark yellow and the whites of your dads eyes will be yellowish. 

What do you mean near Sloan...not the Sloan Kettering Cancer Medical Center?

Yes, they don't eat or want to drink much...dehydration will set in ASAP. I remember I always had to tell Karen to drink water, drink water. The IV usually kicks in right away and you can see a difference.

I never did like the things you were saying about the other doctors, that's way I was pushing you to have your dad see a specialist.  

I don't fully understand the stent issue with regard if they insert a stent your dad will suffacate and die...are these the words form your mom or the doctor? If anything, if the biliruban count is too high, again that means your dad has a bile back, maybe they should insert a drain catheter into the restricted area and drain the backed up bile.

Janie, your dads bilirubin level will not drop until they drain out the bile...it won't drop by it self.

Go easy on your mom...she is overwhelmed with all this crap...it's not easy, she see on love hurting and she damn scared. The doctor should have better bedside manners and put question into the mom's mouth. They did just that for Karen and I when we were at UCSF. We didn't know anything...today's a different story. I have become very involved, even to a point that when the director of Interventional Radiology finishes removing and inserting the three drain catheter's in Karen, he allows me to finish the procedure...nothing big, just clean up his mess and secure the catheters with medical stat-locks and apply the dressing pads. 

I don't no what a DNR is...maybe he means AMD which is an Advanced Medical Directive.

What do you mean looked peaceful...maybe he was just very tired and drained. The transition to what??? hey Janie , don't give up...hey Janie it doesn't sound like your dad is coming home soon...he need s to be cared for. 

It's okay to be sad, it's your father, he loves you and you love him. Janie, it's all in the Attitude...Stay positive even when sometimes it does not look good...let you dad see you dealing with this matter in a positive way...believe me it means a lot. Your mom crying only puts your dad in a depressed mood...that's not good. the your mom it's to cry, but try not to do it in front of your dad...he will only think you know something he doesn't. 

Stay cool Janie...and stay hopeful. It sound like your family needs a strong person. I don't know how old you are , I'm guessing 23 to 25...no matter...be the strong one and keep the family thinking positive, I know it hard, real hard, but if you give in...they will see it.

Take care of yourself...talk to you later.

Your friend Leonard

   

   

 

On 3/20/2009 Solutions wrote:

Hi Janie,

No need to be sorry about anything...I completely understand the situation, I've been doing this for 6 years going on 20.

Yes, I was wondering why the chemo and radiation also...remember I told you chemo and radiation is not the best way to deal with bile duct cancer.

The reason the biliruban is high is because it's not flowing out of the liver, it's backing up into your dads body. remenber what I said about the color of his urine and the whites of his eyes. The urine will turn very dark yellow and the whites of your dads eyes will be yellowish. 

What do you mean near Sloan...not the Sloan Kettering Cancer Medical Center?

Yes, they don't eat or want to drink much...dehydration will set in ASAP. I remember I always had to tell Karen to drink water, drink water. The IV usually kicks in right away and you can see a difference.

I never did like the things you were saying about the other doctors, that's way I was pushing you to have your dad see a specialist.  

I don't fully understand the stent issue with regard if they insert a stent your dad will suffacate and die...are these the words form your mom or the doctor? If anything, if the biliruban count is too high, again that means your dad has a bile back, maybe they should insert a drain catheter into the restricted area and drain the backed up bile.

Janie, your dads bilirubin level will not drop until they drain out the bile...it won't drop by it self.

Go easy on your mom...she is overwhelmed with all this crap...it's not easy, she see on love hurting and she damn scared. The doctor should have better bedside manners and put question into the mom's mouth. They did just that for Karen and I when we were at UCSF. We didn't know anything...today's a different story. I have become very involved, even to a point that when the director of Interventional Radiology finishes removing and inserting the three drain catheter's in Karen, he allows me to finish the procedure...nothing big, just clean up his mess and secure the catheters with medical stat-locks and apply the dressing pads. 

I don't no what a DNR is...maybe he means AMD which is an Advanced Medical Directive.

What do you mean looked peaceful...maybe he was just very tired and drained. The transition to what??? hey Janie , don't give up...hey Janie it doesn't sound like your dad is coming home soon...he need s to be cared for. 

It's okay to be sad, it's your father, he loves you and you love him. Janie, it's all in the Attitude...Stay positive even when sometimes it does not look good...let you dad see you dealing with this matter in a positive way...believe me it means a lot. Your mom crying only puts your dad in a depressed mood...that's not good. the your mom it's to cry, but try not to do it in front of your dad...he will only think you know something he doesn't. 

Stay cool Janie...and stay hopeful. It sound like your family needs a strong person. I don't know how old you are , I'm guessing 23 to 25...no matter...be the strong one and keep the family thinking positive, I know it hard, real hard, but if you give in...they will see it.

Take care of yourself...talk to you later.

Your friend Leonard

   

   

Thanks Leonard,

Unfortunately, sometimes my mom does not relay the complete story or message. I will have to talk to the doctor myself. Sloan Kettering is an outpaitent center. They use the hospitals nearby to their clinics. Their doctors go in and see their patients at the hospital. This doctor was a partner of the doctor that attended my father at Sloan clinic. They also have a nurse that monitors the patients that are admitted the hospital.

Yes, my mom did cry in front of him, and he told her not to do that and he told he will be fine. If she is going to cry, please leave the room. So, I don't do that anymore, and I wont do it again if I can help it.

 

Janie

Hello Janie,

Hey your mom is going through some rough times...they sometimes only hear the worst...It's a lot of information to soak in and most of the time it's not good news.

Hey lets talk about your comment that Sloan Kettering is an outpatient center. We may not be talking about the same campus...click or go to these links  

http://www.mskcc.org/mskcc/htm/5664.cfm 

This link will take you to the Memorial Sloan Kettering Cancer Center's main campus and inpatient hospital located on the upper East Side of Manhattan.

Also go to http://www.mskcc.org/mskcc/htm/657.cfm

This link will give you the address to the Sloan Kettering I've been talking about.

Inpatient Hospital and Main Campus

1275 York Avenue

Between 67th and 68th Streets

New York, New York 10065

212-639-2000

Yes, your dad doesn't want to see your mom crying and hurting inside, plus he's has enough on his mind.

Hey Janie, it sounds like you are being very strong, you're doing great.

I hope they get that backed up bile out of your dads system, that will help him stay away from fever and infections, plus make him feel a hell of a lot better.

By the way...what are their next plans?

Take care,

Leonard