1

(43 replies, posted in General Discussion)

Dear all,

Although it has taken some time, here we are, my sister and I, writing to you in search for your support at this horrible time.   Our hearts still ake with pain and we are still finding it difficult to open up and write about it. Our father passed away on the 29th of November after battling very hard against this monster and for 15 days post surgery. His surgery was major, it lasted close to 13 hours and it involved removing 50 percent of his liver and pancreas, gall bladder, part of his stomach and intestines. Unfortunately his body and in particular his liver was already very weakened by the disease and he didn

2

(28 replies, posted in Good News / What's Working)

Dear Truth4u,

I appreciate you telling me your dad's history. My dad is 71 he has cancer of the gallbladder and bile ducts which is spreading to the middle of his liver. At the moment he has it nowhere else that can be seen. He had an unsuccessful operation on the 4th of September and he has had no chemio or radio. I understand that the operation has enormous risks. We have been explained the risks but  the other prospect is bleak.

The problem that Dr Canady has is that a lot of the people that come to him (I include us) have been turned down from anywhere else for surgery and have stage 4 cancer or very advanced or in various locations. The operations that he conducts are therefore very risky.  I expect his mortality rate to be higher than other surgeon's. However, I do agree with you that it is important to go in in full knowledge of the risks and concious of the probability of success and Dr Canady is a very confident man which can be interpreted as nothing wrong can happen. I don't know what the answer to all this is and we are very scared about my dad but we just have to hope and trust our instincts.

Best regards.

Katia

3

(28 replies, posted in Good News / What's Working)

Dear Truth4u,

I appreciate your honesty and you coming forward. I have a few questions for you if that's OK:
- did your dad have an MRI before the surgery?
- did Dr Canady explained exactly where the tumors where from the MRI? Was he truthful about it and did it correspond with the report from the radiologist?
- how many surgeries did your dad have prior and with Dr Canady?
and - did he have chemio or radiation therapy before the surgery?

You answering these questions is important to us and sorry if they are very personal.

Thanks again for your honesty.

Best regards.

Katia

4

(28 replies, posted in Good News / What's Working)

Dear Truth4u,

What type of cancer did your dad have and how far was it extended? My dad is scheduled to have surgery with Dr Canady on the 14th and I take your accusations very seriously.

Best regards.

Katia

Wonderful news JeffG, I have two boys and nothing could be more precious. Very relieved too that all is well.

Katia

6

(17 replies, posted in Introductions!)

Hi Kap and Sara,

Well it turns out we too have contacted Dr Canady regarding my dad and he has told us that he wants to see him. We have booked our tickets for this Saturday all the way from Spain to see him on Monday. My dad is quite tired and on antibiotics so it will be a difficult trip for him but we feel that we need a second opinion (following JeffG

7

(3 replies, posted in General Discussion)

Dear Tam,

Sorry to hear about your uncle's recurrence. My dad was diagnosed with CC in September and his was also unresectable we are going to try getting a second opinion from Jerome Cannady from the Monongahela Valley Hospital in Pittsburgh. He seems very knowleageable about this type of cancer. His name is mentioned by other people in this site if you do a search.

All the best to you and your family.

Best regards.

Katia

Dear all,

Is anyone taking P53 protein as a tumor compressor? If yes where can you buy it? Is it incompatible with other treatments?

Best wishes,
Katia

9

(16 replies, posted in General Discussion)

Dear Jules,

I am so sorry about your loss. I have read the research pages and what your dad wrote and he was such a great person to share all his advice and experience with everyone. This disease is so horrible. My dad was diagnosed in September and we are so scared. It is so great for people like you to be around and help. Thank you so much about the info on the DC treatment. I have sent an e-mail to the Institute your dad went to to see what they say. My dad lives in Spain and I live in London. Will keep you posted.

My warmest wishes for you and your family.

Katia

10

(7 replies, posted in Introductions!)

Hi Nicole,

So sorry to hear about your dad. My dad was diagnosed in September and we are still getting to grips with the whole thing. It is so hard though.
I have never heard of SIRT-Y90. Could you give a little bit more detail as to whether it is chemo, radio, immunotherapy? Would like to look into it.
All the best to you, your family and your dad.

Katia

11

(16 replies, posted in General Discussion)

Hi Jeff,

Well I have had a look for info on Escozul and it looks like it is blue scorpion venom that has had some success according to Cubans in treating cancer. Unfortunately, it looks like it is not widely available, the only apparently reliable source of this is Labiofam S.A in Cuba, and also it has not been approved for wide distribution (apparently Labiofam is in the process of getting it approved). Apparently other providers of Escozul don't really sell the real product and some might sell it but in unsafe quantity. It sounds like a dead end to me unless travelling to Cuba but will let you know if I find out more.

Currently looking into the Davanat-5FU clinical trial but our European insurance doesn't cover the costs so not sure we qualify for it.

All the best and keep it up!

12

(16 replies, posted in General Discussion)

Dear Jeff,

Great news about your scan!!!!!! It's so inspiring to hear your story and how brave you are. Just had a few questions that I wanted to ask you if that's OK. In the time you have been fighting this disease did you try radiotherapy and did you ever combine Davanat with any of the chemo treatments? Also, have you heard of Escozul, blue scorpion venom in Cuba being used to treat cancer?


Dear Jules,

What does the treatment that your dad started to have consist of? What is it called?

Hope this message finds you both Ok.

Best regards.

Katia

Hello everyone,

It has been so great to have all your feedback over the last month or so. Thanks all of you. We need one more piece of advice. As I mentioned in a previous posting the latest on my dad ia that he was taken back into hospital because he had a liquid in his right lung. It turns out it was probably inflammatory and infectious (cna't confirm which) rather than tumoral. He also had another scan done which shows that the tumor is mainly in the bile ducts. He is now recovering from that and awaiting to start his chemo/radio treatment. The onchologist wanted to go for the radiotherapy in combination with 5FU that some of you have recommended but she now sudenly said that because the latest scn shows some liquid around the abdomen that radiotherapy is now not an option. I know that it is not good to doubt experts opinion but wanted to check with all of you as this is so important to us. Is this true? When there is liquid in the abdomen no type of radiotherapy can be given? How many types bu the way of radiotherapy there is? Has any of you had this happen? I just find it difficult to believe as some liquid in the abdomen must be something that happens with tumors. Anyway, your advice is invaluable.

All the best to all and thanks a lot again.

Katia

14

(17 replies, posted in Introductions!)

Hi Kap,

I just had a look at the video. It gives so much hope. However, which hospital is Dr Canady attached to? Is he working independently? I wonder whether we should contact him too to send him my dad's info. I was also wondering, was your best friend in a clinical trial with the Anderson clinic with Herceptin? This is something they might offer my dad as he is being treated by the Anderson in Madrid. I hope all the best for your best friend and wish you all the best of luck. We send as many positive vibes from here (London in the UK and Madrid in Spain) as we can.

Katia

Hi Jeff,

It's so inspiring to hear your story and how brave you are. All the best and I hope that the taxodere works for long and you don't feel too bad. In your time you have been fighting this disease did you try radiotherapy and did you ever combine Davanat with any of the chemo treatments. Also, have you heard of Escozul, blue scorpion venom in Cuba being used to treat cancer.

Hope tis message finds you Ok.

So great to have you around, specially for newcomers like me. I am off to Spain tomorrow to see my dad (he lives in Spain and I live in London which makes it really hard).

Best regards.

Katia

Hi there, I have never heard of it. Have you found out more about it? I would be interested in finding out more. Cubans have a great healthcare system. All the best to you and your brother. My dad has suspected CC (the biopsy came out negative but the scanner shows it's there!)

Dear all,

Thank you so much for all your replies and information. Sorry I haven't been in contact lately but was in Spain with my dad and it was all a bit busy with no easy access to the internet. My dad has had the stent put in in hospital but I was a bit upset when they told us that the only one they could do was a pemanent metal one. They didn't know of any other methodologies. Dear Mary, is your husband's stent made of plastic or metal? What happens if my dad's clogs? We are now starting the process of going with the Anderson clinic to start the radio and chemio treatment and will let you know all of the progress. We keep our fingers crossed. I am just a bit worried that a month has gone by since the operation and he hasn't started the treatment yet. How fast does this thing grow? Dear Mary, it sounds like your husband's operation was very efficient. Unfortunately, both of my dad's bile ducts are taken at the moment so they couldn't do that. Anyways we keep our fingers crossed and thanks again for all your precious advice.

Best regards.

Dear Mary,

Thank you so much for your prompt and so detailed reply. I am so happy that your husband's tumor is dead. There is no reason why it shouldn't stay like that. We will be thinking of him. We are currently considering the Anderson clinic in Madrid which is a branch of the Andersin clinic in Houston. We are trying to schedule an appointment. Fingers crossed they will have this treatment for him as the hospital where he is now doesn't. Just to let you know Dr Gregory Gores from the Mayo clinic also agrees with this combination (radiation beam therapy with the oral form of 5-FU) as the best option at this satge. Just a couple more questions (sorry for having so many questions) if that's OK. Did your husband have initial surgery like my dad to try to remove the tumor surgically? Did your husband have a stent put in like my dad is scheduled to have put in on Thursday? Is that stent compatible with the treatment? Finally, did your husband have the brachytherapy at the same centre?

Thanks again for all your precious help.

All the best.

Katia.

Thanks Mary. This gives us some hope. If you don't mind me asking, was your husband's Klatskin tumor unresectable too , what stage was it? My dad's apparently is stage 4 although the lymph glands don't seem to be affected yet. Sorry one more question is Xeloda the same as 5-FU? and finally where was your husband treated.

Apologies for the avalanche of questions. I guess not two individuals are the same but just want to get as much feedback as possible.

Thanks very much for everything.

Katia

20

(4 replies, posted in General Discussion)

Hi there,

I hope all is better and was actually wondering about how did the procedure go. Is it something that is worth considering? What does it involve?
All the best.

Katia

Thank you very much to all for the every useful advise. Once we have my dad's biopsy results I will contact other consultants for a second opinion (they all ask for a copy of the report which we don't have yet). I have also spoken with Dr Andrew Kennedy at the Wake Radiology Onchology department in NC under Wayne's advice and he told me that in his opinion the best first treatment for cholangiocarcinoma is a combination of: Extrenal beam radiation and chemotherapy (5-FU with Davanat) both for 5-6 weeks and both done at the same time. Has anybody experienced this particular treatment?

Thanks to you all and best wishes.

Thank you for the advise. We trust those that did the surgery as they are one of the best teams in Spain and they do the liver transplants in Spain (surgeon's name is Dr Moreno) but you are right we should get a second opinion. Not sure where though. Mayo clinic?

Thanks again.

Hi Wayne,

I have found your story extremely useful and also an eye opener of what possibly it is to come.

My sister and I found out 3 weeks ago that our dad,71 years old, and best friend has cancer of the gall bladder and bile ducts. This has been devastating for us. He had an operation 1 week ago but unfortunately it was unresectable (I understand that means that they couldn't take it all out). I understand that they have cleaned a bit around the area but have left everything including the gall bladder. It appears for the moment that the liver is only affected in the area adjacent to the bile ducts and that the nodes around are not affected. We are wondering what to do next.

We have heard of the Mayo and MD Anderson clinics. But now through your story we are now wondering whether we should contact Dr Andrew Kennedy of the Wake Radiology onchology centre in the US first. Could you tell us a bit more about your experience with him? Do you think my dad would be a candidate for the treatment Valerie had?

We are also wondering what treatment is best to follow aside from procedures. What treatment is Valerie following now? We are confused because there are so many Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial conducted with this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise!

Thank you so much and all the best for your next step in the battle.

My sister and I found out 3 weeks ago that our dad ,71 years old, and best friend has cancer of the gall bladder and bile ducts. This has been devastating for us. He had an operation 1 week ago but unfortunately it was unresectable (I understand that means that they couldn't take it all out). I understand that they have cleaned a bit around the area but have left everything including the gall bladder. It appears for the moment that the liver is only affected in the area adjacent to the bile ducts and that the nodes around are not affected. We are wondering what to do next. We have heard of the Mayo and MD Anderson clinics as well as through your website of the Wake Radiology onchology centre in the US. Which one should we go to first? What treatment should he be put on? Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial about this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise! We are also really happy to have found your website.