Cholangio Cell Carcinoma

 

On 3/21/2009 Solutions wrote:

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

 

 

 

Hi Leonard,

Sloan Kettering has several outpatient clinics. The main one is in Manhattan. My colleague went over there to find out info for me. They do not have a hospital. They use hospitals close to them, but they send their doctors to check on the patients. Columbia  Presbyterian is one of the hospitals that they use which is right across the street from Sloan kettering.

I spoke with my dad's doctor today. He didnt sound too hopeful. He told us to prepare for the worst even if we continue to be hopeful. My dad's bilirubin has been increasing instead of decreasing. The doctor said that they will make attempt to do the stent on Monday provided he is stable enough, but there are not guarantees. His bilirubin is about cause liver/kidney failure. His bilirubin is 31 was 24. I know the norm should be about 5 or below.  It doesnt look good for my dad, but I am keeping the faith. It could be month or more left. I have been crying all day, and my mom too.

 

Janie

 

Oh my...damn, I was hoping like you and your mom everything was going to be much better...I feel so bad for you and your mom.

This is a real killer cancer...it grows slow and by the time it puts it's ugly head up...it's too late.

Janie, a 31.0 count in bilirubin is to me way, way off the chart. Yes you're right the normal count for a bilirubin is 5.0 and below more like 2.0...when Karen had surgery she had a 5.2 bilirubin and they felt that was very high, I can't imagine 31.0.

As you know I usually have a lot to say...but right now I just have a very sad emotional feeling entering my body and forgive me for not chatting so much.

Please take care of yourself and tell you mom I truly understand her feelings. Karen and I have been married for 25 years when a doctor told me my wife had 6 weeks to live...to be honest with you, I don't know what I did that day. My mind was a total blank. I felt so sad. The only thing I remember was that I had to get her to UCSF and hopefully they would save Karen.  I didn't know how I was going to go home and tell Nick and Stephanie our children there mom wouldn't be with us very long...it was killing me. Karen was 53 at the time and I was 63.. the children were 18 and 20.

I don't have much more to say. Maybe ask you mom to go out for a light dinner ...share a glass or two of red wine and talk... 

Please keep me updated...and please take care of youeself.

Leonard 

 

Hi Leonard,

My dad fought a strong fight, but he died this past Saturday.

 

On 3/30/2009 Janesi wrote:

Hi Leonard,

My dad fought a strong fight, but he died this past Saturday.

Dear Janie,

I am so sorry to hear this news. You were very strong through all this and I'm sure your dad and mom knew it. 

Your dad isn't suffering anymore and if anything good comes out of this damn illness it's that.

Thank you for being my friend through all these ups and downs, you and I  chatting has also helped me through the latest problems with Karen.

Karen has been in and out of the hospital these past few months. Just last night she had to be rushed to ER for heavy internal bleeding in the liver area. She is currently at UCSF, they think there's a problem with getting blood supplied to her liver. They believe they can correct the problem, we don't know.

Janie, you take care.

Leonard

 

     

 

 

On 3/31/2009 Solutions wrote:

 

On 3/30/2009 Janesi wrote:

Hi Leonard,

My dad fought a strong fight, but he died this past Saturday.

Dear Janie,

I am so sorry to hear this news. You were very strong through all this and I'm sure your dad and mom knew it. 

Your dad isn't suffering anymore and if anything good comes out of this damn illness it's that.

Thank you for being my friend through all these ups and downs, you and I  chatting has also helped me through the latest problems with Karen.

Karen has been in and out of the hospital these past few months. Just last night she had to be rushed to ER for heavy internal bleeding in the liver area. She is currently at UCSF, they think there's a problem with getting blood supplied to her liver. They believe they can correct the problem, we don't know.

Janie, you take care.

Leonard

 

     

 

 

Leonard,

Thanks also for your friendship and advice. It was really helpful. I hope that they will be able to help Karen.  It really is a nasty cancer. I think more awareness about it should be brought to the attention of the public.

Janie 

 

 

I'm no doctor but have become a little more knowledgeable about Bile Duct cancer since my wife was diagnosed with it 1st march 2008. She was jaundiced, they put in a plastic stent via the throat but because the tumor was in the upper end of the bile duct (intra hepatic) inside the liver it didn't work. Ten days later they did a PTC (inserting a metal stent through the stomach wall into the bile duct from the top of the bile duct down into the blocked area) and this allowed the bile to drain away. They went in to see if an operation could be done but saw small seeds of the tumor had spread to the other side of the liver and onto the stomach wall so no further surgery was performed and she was sent home with the comment from the surgeon that the tumor would double in size every 6 weeks, she would have 6-12 months to live. No chemo was offered and it was suggested she go and book into the local hospice. We felt that the medical fraternity simply dumped us.

We went on a vegetarian diet, went to several alternative healers, gave up on coffee, sugar, dairy and lots of things we used to eat & drink. Feb this year we finally got to an oncologist for an opinion, had a cat scan and was told that there was no evidence of any spread in the lymphatic system, the seeds now looked like cysts and there was no sign of growth from the last scan 10 months earlier. Apart needing to have a rest nearly every afternoon my wife feels reasonably good and generally leads a normal life. We have another scan in 4 weeks to check further progress but generally feel positive that she has out lived what the expert told us and truly food has been our medicine. 

At this point I don't believe she is cured but against all the odds something has happened to extend that 6 months and give the results we have. Yes, we were told this is incurable if you do not get an operation and if it is intrahepatic it is worse but there is hope. De-stress, mediate, eat the right food, where possible keep away from any material that is toxic to the body and life can be more bearable. I know what you are going through, my thoughts and best wishes to you and your family,

Lewis 

 

 

On 4/3/2009 Lewis wrote:

I'm no doctor but have become a little more knowledgeable about Bile Duct cancer since my wife was diagnosed with it 1st march 2008. She was jaundiced, they put in a plastic stent via the throat but because the tumor was in the upper end of the bile duct (intra hepatic) inside the liver it didn't work. Ten days later they did a PTC (inserting a metal stent through the stomach wall into the bile duct from the top of the bile duct down into the blocked area) and this allowed the bile to drain away. They went in to see if an operation could be done but saw small seeds of the tumor had spread to the other side of the liver and onto the stomach wall so no further surgery was performed and she was sent home with the comment from the surgeon that the tumor would double in size every 6 weeks, she would have 6-12 months to live. No chemo was offered and it was suggested she go and book into the local hospice. We felt that the medical fraternity simply dumped us.

We went on a vegetarian diet, went to several alternative healers, gave up on coffee, sugar, dairy and lots of things we used to eat & drink. Feb this year we finally got to an oncologist for an opinion, had a cat scan and was told that there was no evidence of any spread in the lymphatic system, the seeds now looked like cysts and there was no sign of growth from the last scan 10 months earlier. Apart needing to have a rest nearly every afternoon my wife feels reasonably good and generally leads a normal life. We have another scan in 4 weeks to check further progress but generally feel positive that she has out lived what the expert told us and truly food has been our medicine. 

At this point I don't believe she is cured but against all the odds something has happened to extend that 6 months and give the results we have. Yes, we were told this is incurable if you do not get an operation and if it is intrahepatic it is worse but there is hope. De-stress, mediate, eat the right food, where possible keep away from any material that is toxic to the body and life can be more bearable. I know what you are going through, my thoughts and best wishes to you and your family,

Lewis 

 

Thanks Lewis,

I wish my dad had had more time. He died. I am just now getting back from a mini vacation in order to try to get my mind off of his passing. It didn't reall work, but it did help a little.

I wish your wife and your family all the best with with this. I just wish I could have gotten my dad a second opinion earlier, but we didnt have much time to work with.

 

Janie

 

On 3/31/2009 Solutions wrote:

 

On 3/30/2009 Janesi wrote:

Hi Leonard,

My dad fought a strong fight, but he died this past Saturday.

Dear Janie,

I am so sorry to hear this news. You were very strong through all this and I'm sure your dad and mom knew it. 

Your dad isn't suffering anymore and if anything good comes out of this damn illness it's that.

Thank you for being my friend through all these ups and downs, you and I  chatting has also helped me through the latest problems with Karen.

Karen has been in and out of the hospital these past few months. Just last night she had to be rushed to ER for heavy internal bleeding in the liver area. She is currently at UCSF, they think there's a problem with getting blood supplied to her liver. They believe they can correct the problem, we don't know.

Janie, you take care.

Leonard

 

     

 

Hi Leonard,

 

How is Karen? Is everything alright? I had been thinking about you guys since my dad's passing.

 

janie

 

I have not been on this site for some time. I have been treated for
bile duct cancer and have survived since being given 3-6 months to live
at IU hospital in Indiana in 2000. YOU NEED TO GET A SECOND OPINION The only
way that I am still alive in MAYO in MN. You should contact Dr. Gregory
Gores. If the cancer has not spread to other areas of the body it may
be possible to remove the cancer and get a liver transplant. Dr Gores,
Dr Charles Rosen have saved my life.I made a one page website in their
honor. www.bileductcancer.org. email me at another email that I check
more often. --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--if I can be of further assistance.

Hi Janie, I know exactly how you are feeling. My wife was diagnosed with intrahepatic bile duct cancer feb 08. The first plastic stent they tried to put in via the throat (ERCP) didn't work as the bile duct blockage was too far into the liver. They then did a PCT (a wire in the side to the liver and down the bile duct that way) which put in a metal stent which has been working fine since. At the time I also had the job of emptying the bag of surplus bile for a week while the liver was depresurised. Then in April 08 they looked to remove part of the liver but the cancer seeds had spread so no operation. We changed our diet to that of a vegetarian and up until beginning may 09 my wife has been generally fine. 

Regretably this is a nasty cancer that has a mind of it's own. It has been a hard past 12 month as the doctor here told us it would double every 6 weeks and my wife might have 6-12 month. She has survived 12 months and whilst it has come back, we are very appreciative of the time we have had and are working on lots of positive thinking, meditation and prayers for more time. Radiation treatment for us was not sucessful because of the location of this cancer. She has been in hospital for the last 10 days and then transferred to the local hospice. She was very scared at going to the hospice due to the thought of what a hospice is all about but with the care she has had there she looks way better than the day she went in and comes home on monday, something we didn't believe would happen. All we can do is to show the patient all the postive support we can, feed them small meals as they desire bearing in mind that this cancer closes down the appetite desire.

My heart goes out to those with this cancer as it has us in its grip before we know it is there but with love, compassion and good care, we can help the afflicted through what is a very difficult and scary time for the afflicted. I still hope for a good outcome for my wife who is only 56 but also have to accept that some one else might get the miricule. I am sorry but whilst it is hard for you, you need to try and be positive all the time even though it is dreadfully hard. Everyone is different in their response to this cancer, it's treatment and it's timing.

All the best, Lewis