hi everyone

hi, my farther has just been back too see the liver surgeon and been told they cant do the liver resection as the cancer has rapped itself round the portal vain and has spread too most of his liver, we were praying that the op would help but its not too be. he has been offered chemo so we should be goin too see an oncologist soon, can anyone give advice on what too expect with the chemo as its more for palliative care than anything. god bless too you all aliox

 

On 10/2/2009 alio1 wrote:

hi, my farther has just been back too see the liver surgeon and been told they cant do the liver resection as the cancer has rapped itself round the portal vain and has spread too most of his liver, we were praying that the op would help but its not too be. he has been offered chemo so we should be goin too see an oncologist soon, can anyone give advice on what too expect with the chemo as its more for palliative care than anything. god bless too you all aliox

Hi Alio1,

This is Leonard from Alamo...I am very sorry to hear the latest news. Having the tumor around the Portal vein is not good at all. My wife's tumor wrapped around the (HA) hepatic artery. Her surgeon did not try and cut away the tumor from the artery for fear of doing more damage so he removed part of her HA. The portal vein is the main supply of blood to the liver without it, you have a trouble.

This is a very sad situation...if you have read my other messages to folks on CancerCompass you know I am a very positive person. Your dad has a serious issue. Well, Chemotherapy is not the first choice of doctor's to handle this matter. I'm sure your dad's oncologist will tell him this fact. Be careful going with chemo, the side effects of chemo is hell...and just maybe your dad doesn't want to compound the pain and suffering. This is a real ugly situation. 

If I may ask Alio1...How old is your dad? Did you dad do any traveling in Southeast Asia is the past 20 to 25 years?  Did the doctor happen to say what stage your dad's bile duct cancer was in when he was diagnosed? 

Alio1, Stay strong and supportive of your dad, he is going to need it. 

Again, I am so sorry to hear this latest news, bless you and take care

Leonard, From Alamo   

 

hi leonard, my farther turned 60 on thursday, and he s never travelled outside uk in his life. the consultant told him that light theraphy might of helped but his liver is now covered in small tumours and we had too wait 4 weeks too be told this, while he sat at home trying too recover from the stents that had become infected but they sorted that problem out so we started been very positive and then this news, its totally knocked us for six. My mum finds it hard too hear anything regarding the fact that she will lose my dad, so im the one who,s been taking him too see consultant and im a proper daddys girl, but i have never cried in front of my dad even though my heart is broken and will keep the positive face as long as he needs me. I thank you very much for your support as its been good honest advice and very much appreciated and will keep you updated as and when i can.   alio

 

On 10/3/2009 alio1 wrote:

hi leonard, my farther turned 60 on thursday, and he s never travelled outside uk in his life. the consultant told him that light theraphy might of helped but his liver is now covered in small tumours and we had too wait 4 weeks too be told this, while he sat at home trying too recover from the stents that had become infected but they sorted that problem out so we started been very positive and then this news, its totally knocked us for six. My mum finds it hard too hear anything regarding the fact that she will lose my dad, so im the one who,s been taking him too see consultant and im a proper daddys girl, but i have never cried in front of my dad even though my heart is broken and will keep the positive face as long as he needs me. I thank you very much for your support as its been good honest advice and very much appreciated and will keep you updated as and when i can.   alio

Good Morning Alio,

It's around 8:45am on Saturday morning here in California. Thank you for the information. The reason I asked is because 80% of the cause of bile duct cancer is a parasite in drinking water and/or on vegetables and fruit. Southeast Asia in the core problem area. There are other causes but the largest cause is the parasite. This cancer is very rare as you must know by know. To find a doctor that will handle these cases is also rare... 

It's hard to understand why the 4 week wait to find liver tumor's. At UCSF in San Francisco my wife has a PET/CTscan and within 2 hours her Oncologist is sitting down with us and showing us the results. I guess socialized medicine isn't the greatest. 

I understand how your mom must feel, she knows she may lose her life long partner...I was a basket case when they told me Karen had 6 week to live unless she had surgery. Lucky for us, UCSF handles over 200 bile cancer cases each year and many more liver cancer cases...they knew what and how to attack the situation. 

It sounds like you are carrying the load. I'm sorry to hear that, but better you than your mom...this is a very sad situation. Spend as much time with your dad as possible...tell him things that sometimes children forget to say to their parents...simple things like "I love you". One little hint, don't ask him how he's feeling all the time and don't be hurt if he gets angry at you or you mom...it's just his way to expressing anger about the entire situation. 

Well, Alio it's not the first time I'm heard of a situation like this...I've been on CancerCompass for many years now and I don't hear many survivor stories.

Yes, please keep me updated, I feel a small but strong attachment to you and your family. Comfort your mom and be patient is going to get harder.

Take care...I wish I could have been more helpful.

Leonard

Alamo, California     

 

hi everyone, well were still waiting for the oncologist too get back too us our local gp said we should hear this week but i wont hold my breath, it seems too me and im probably been cynical but do these people care when they tell you there s no hope but you will see someone too help with care and then they take so long in getting back, do they know that all these patients have is hope and at the moment my farther feels that all hope is lost. i have too keep smiling and gritting my teeth and tell him too be positive when i feel like my heart has already brokenand im angry. but never the less my lovely dad is still with us even though he s gettin a little frail and weak. good days and bad but not a lot of pain, god bless you all, will write again soon. and thanks leonard from alamo for all your good wishes. alio

Good Morning Alio1,

This is Leonard...I totally agree with you. It's bad enough knowing how serious this situation is and to have the doctor that knows for sure what's going on, sit on his/her butt and not contact you is by far an expression of total arrogance. They all like to be in control and play God..they are never taught compassion. Alio1, you are not being cynical, you are expressing what all of us feel at these times.

You are doing the right thing...keep your father as positive as possible no matter how difficult it becomes and I know how hard that is at times.

I really wish I could offer more, but Alio1 you've come a long way since your first message...you're doing great, keep your spirit up and stay calm, it is what it is and we can't change it.

Take care yourself, you sound like a young lady...you have a long life ahead of you. There will be other heartbreaking issues in your life...the way you are currently handling this matter will help when the next bump in the road appears.

God Bless you and your entire family.

Until I hear from you...take care Alio1...Leonard     

 

Hi leonard, hi everyone. Well were still waiting too see the oncologist and i went round too my parents today and my dads left leg has swollen up like a balloon, got in touch with gp and he said it could be his meds and just too keep it elevated as id allready done this,i felt as though he was just goin through the motions with me. Its funny what you talk about when you run out of things too say, my dad mentioned me havin my gallbladder removed 2 yrs ago and how strange that was as i was in excruciating pain but when they went in there was no gall stones or anything unusual and my dad now thinks this was his omen, dont ask why i dont know. But he seems ok today just getting fed up of waiting but as he says he hasnt got anything better too do at moment because of his leg, but if this waiting goes on much longer i will loose it and start getting angry.    love too you all, will write again soon.   Alio                    

Good morning Alio,

Get angry, sometimes they need to hear your frustration. I'll chat more later..taking Karen into UCSF for her Chemotherapy session.

Back home around 4 hours.

Take care...BTY the med's can do that to the body. Karen had a reaction very similar. 

 

Later...Leonard 

 

hi all, hi leonard hows karen today, still no word from oncologist, i even spoke too his secretary and she told me he would be in touch asap, and then i lost it. I didnt swear or cuss i was just angry but she put the phone down so am still waitin in hope, my dads leg has swollen more and he complaining of pain in his calf , i think it could be a dvt but gp says its part of the illness now, but if the pain doesnt go soon will take him too hospital myself and get him checked out then feathers will start flying. Sorry bout that but am annoyed, any way hows karen doin with the chemo, have they said how long she has too have it for this time and how is she in herself.    love too you all.  aliox

 

On 10/13/2009 alio1 wrote:

hi all, hi leonard hows karen today, still no word from oncologist, i even spoke too his secretary and she told me he would be in touch asap, and then i lost it. I didnt swear or cuss i was just angry but she put the phone down so am still waitin in hope, my dads leg has swollen more and he complaining of pain in his calf , i think it could be a dvt but gp says its part of the illness now, but if the pain doesnt go soon will take him too hospital myself and get him checked out then feathers will start flying. Sorry bout that but am annoyed, any way hows karen doin with the chemo, have they said how long she has too have it for this time and how is she in herself.    love too you all.  aliox

Hi alio1,

I am new to this web site and read your story with interest. My close friend developed symptoms in July of this year and was initially diagnosed with Liver cancer a couple of weeks later. Like you we have had delay after delay and have been passed from hospital to hospital.I'm not sure what region of the UK you are based but we founf that by complaining to PAL which is the patient body that eventually things started to move. Unfortunately the news was not good. She has inoperable bile cancer with the tumours in the liver surrounding the portal vein. We have just started chemo at Christies - a combination of cisplatin and gemcitabine as part of her palliative care programme. This chemo is for 3 months which was the initial estimate of survival. We have been given so many mixed messages it's untrue, just try to stay positive and cherish all the time you have left

Investigate private appointments as it may spped your consultant meeting along and pressure your GP as he can get things moving if he really wants to. McMillan nurses are really useful too

Hope this helps