Sammi79
03-20-13, 06:55 AM
My father passed away on Friday. He died in my arms after holding on to get home. It is not easy to watch someone you love die, the feeling of helplessness is profound. His troubles are over now, for which I am grateful. The final victory of entropy over the order and forms of life will overwhelm us all eventually.
I am relating this story now to share the things I have learned, because it may help someone avoid the illness that killed him. One of his closest friends has already been helped in this way.
3 years ago my father went to his GP with pain in his right shoulder which he suspected to be arthritic. After X-rays showed no uric acid build up nor the damage normally caused by Arthritis he had a blood test. The bloods showed slightly lower levels of certain liver enzymes than average. After a second blood test he was diagnosed with HCV (Hepatitis C Virus)
https://en.wikipedia.org/wiki/Hepatitis_C#Virology
As viruses go, this one is truly impressive, immaculately evolved. Some people get symptoms but most do not. It may take half a life time for the liver damage to become symptomatic. There is no vaccine, but standard anti-viral medications can control it completely, most people are certified clear after a 6 month chemo program. Not very nice but tolerable. The obvious trouble is if you don't know you're ill, you won't seek treatment. The not so obvious trouble is that the liver itself is an organ that is singularly complex, with an array of functions ranging from the invisibly subtle (like processing a particular chemical) to the global over arching (like regulating body temperature) so any manifest symptoms are easily misinterpreted. You can have this disease your entire adult life and not know.
In the 1980s here in UK, there was a large and expensive media campaign to educate people about the risks of HIV (Human Immunodeficiency Virus) and the advanced stage of the disease AIDS (Acquired Immune Deficiency Syndrome) Now HIV can be completely controlled by drugs. There has never been to my knowledge a similar campaign regarding HCV, even though the transmission types for each are practically identical.
Anyway, my father was prescribed a course of chemo for his HCV and sent for an ultrasound scan to establish how much damage had been done to his liver. At this scan the physician found a lump, and ordered a CT scan to get a better look. After the CT was ordered an MRI scan. From this scan he was diagnosed with advanced Hepatocellular Carcinoma. A tumor roughly the size of a duck egg. He was also informed that judging by the damage to his liver he had unknowingly had HCV for several decades at least. Strangely, the pain in his shoulder had been a result of the tumor pressing on the hepatic nerve which, runs up through your right shoulder.
Now here is the bind.
The treatment for HCV conflicts with the cancer treatment. This cancer is caused by yet another virus that is common inside the body yet when the liver is damaged in this way it gains a foothold in the damaged liver tissue and causes aggressive metastatic tumors. The cancer will kill you quicker than the liver damage, so the cancer treatment trumps the HCV treatment. Even at this stage, you may (like my father) experience no symptoms.
For this type of cancer, the best chance for cure is surgical resection. Factors negating this treatment are tumor size, location near to major blood vessels etc. By these criteria resection was an option. However, the background chronic HCV and the resultant damage to his liver was extensive. The whole liver contained scar tissue which was leading to widespread cirrhosis. Resection in this case would very likely result in immediate and complete liver failure. The reality is when the cirrhosis sets in, you absolutely need a liver transplant. There is no other hope.
The criteria for liver transplant regarding patients with cancer are pretty strict, and with good reason. Tumors above a certain size indicate either chronic or very fast growing disease. Both of these are big negative factors when deciding about a transplant. Basically due to the immune suppression permanently required for transplant patients, cancers with tumors above a certain size will almost certainly develop another cancer in the new liver, which will be untreatable and will grow much quicker due to the immune suppression. Metastases (the embolisation and spread of tumor cells to separate locations within the body) is another big no no for the same reason.
So, what is left then? can't have resection (die on the table) can't have transplant (waste of a good liver) Don't get me wrong, the cruel reality of his condition was not lost on the physicians. A consultant oncologist (real high flyer) put him through a series of aggressive TACE procedures https://en.wikipedia.org/wiki/TACE with the goal of shrinking the tumor enough to fit the transplant criteria. While the goal was not achieved, the progression of the cancer was certainly inhibited. After that he took the opportunity to be involved in clinical trials in which he got a new Kinase Inhibitor drug for 9 months. From diagnosis he had overall 2.5 years of relatively normal life. He was only really ill for the last couple of months. This was a good deal. 80% of people presenting his exact cancer are dead inside 6 months. 100% of people with cirrhosis of the liver will die painfully without transplant. https://en.wikipedia.org/wiki/Cirrhosis_of_the_liver it is not pretty. Morphine is truly the most important pharmaceutical ever utilised.
So, for your information. HCV transmission method is blood to blood. Obviously (ex) IV drug users are at high risk. I believe this is the way my father contracted it, as a teenager in the 60s. Other more mundane but no less obvious methods are sharing razors/toothbrushes and one for anyone who might have at some point used a shared tube or rolled up banknote to sniff anything - the blood vessels in your nose are incredibly fine and delicate, and it is quite possible to mix blood without any being visible. Don't take offense, I am not advocating nor implying anything. I mention only as a conscientious addition to the listed transmission types that can be found on the wiki page linked above.
The crucial point I should make here is; In the UK if you go to the GUM clinic and ask for a blood test, you MUST ask SPECIFICALLY that you want to be tested for HCV otherwise it will not be done. HIV is automatic, but HCV is not. If you have anything in your past your can not be sure about, casual partners, drug use, tatoos etc.. get tested now. If you're unlucky, you'll get a 6 month chemo course and avoid all the complications above. My fathers expressed wish was that as many people as possible might benefit from his experience as possible, so is my motivation for my story to you, from my point of view as his full time carer. It has taken 3 years from the middle of my life, and filled them with mind bending stress. I had to fight tooth and nail to get him home to die with dignity. He got home 7 hrs before he died.
Regards,
Sam.
I am relating this story now to share the things I have learned, because it may help someone avoid the illness that killed him. One of his closest friends has already been helped in this way.
3 years ago my father went to his GP with pain in his right shoulder which he suspected to be arthritic. After X-rays showed no uric acid build up nor the damage normally caused by Arthritis he had a blood test. The bloods showed slightly lower levels of certain liver enzymes than average. After a second blood test he was diagnosed with HCV (Hepatitis C Virus)
https://en.wikipedia.org/wiki/Hepatitis_C#Virology
As viruses go, this one is truly impressive, immaculately evolved. Some people get symptoms but most do not. It may take half a life time for the liver damage to become symptomatic. There is no vaccine, but standard anti-viral medications can control it completely, most people are certified clear after a 6 month chemo program. Not very nice but tolerable. The obvious trouble is if you don't know you're ill, you won't seek treatment. The not so obvious trouble is that the liver itself is an organ that is singularly complex, with an array of functions ranging from the invisibly subtle (like processing a particular chemical) to the global over arching (like regulating body temperature) so any manifest symptoms are easily misinterpreted. You can have this disease your entire adult life and not know.
In the 1980s here in UK, there was a large and expensive media campaign to educate people about the risks of HIV (Human Immunodeficiency Virus) and the advanced stage of the disease AIDS (Acquired Immune Deficiency Syndrome) Now HIV can be completely controlled by drugs. There has never been to my knowledge a similar campaign regarding HCV, even though the transmission types for each are practically identical.
Anyway, my father was prescribed a course of chemo for his HCV and sent for an ultrasound scan to establish how much damage had been done to his liver. At this scan the physician found a lump, and ordered a CT scan to get a better look. After the CT was ordered an MRI scan. From this scan he was diagnosed with advanced Hepatocellular Carcinoma. A tumor roughly the size of a duck egg. He was also informed that judging by the damage to his liver he had unknowingly had HCV for several decades at least. Strangely, the pain in his shoulder had been a result of the tumor pressing on the hepatic nerve which, runs up through your right shoulder.
Now here is the bind.
The treatment for HCV conflicts with the cancer treatment. This cancer is caused by yet another virus that is common inside the body yet when the liver is damaged in this way it gains a foothold in the damaged liver tissue and causes aggressive metastatic tumors. The cancer will kill you quicker than the liver damage, so the cancer treatment trumps the HCV treatment. Even at this stage, you may (like my father) experience no symptoms.
For this type of cancer, the best chance for cure is surgical resection. Factors negating this treatment are tumor size, location near to major blood vessels etc. By these criteria resection was an option. However, the background chronic HCV and the resultant damage to his liver was extensive. The whole liver contained scar tissue which was leading to widespread cirrhosis. Resection in this case would very likely result in immediate and complete liver failure. The reality is when the cirrhosis sets in, you absolutely need a liver transplant. There is no other hope.
The criteria for liver transplant regarding patients with cancer are pretty strict, and with good reason. Tumors above a certain size indicate either chronic or very fast growing disease. Both of these are big negative factors when deciding about a transplant. Basically due to the immune suppression permanently required for transplant patients, cancers with tumors above a certain size will almost certainly develop another cancer in the new liver, which will be untreatable and will grow much quicker due to the immune suppression. Metastases (the embolisation and spread of tumor cells to separate locations within the body) is another big no no for the same reason.
So, what is left then? can't have resection (die on the table) can't have transplant (waste of a good liver) Don't get me wrong, the cruel reality of his condition was not lost on the physicians. A consultant oncologist (real high flyer) put him through a series of aggressive TACE procedures https://en.wikipedia.org/wiki/TACE with the goal of shrinking the tumor enough to fit the transplant criteria. While the goal was not achieved, the progression of the cancer was certainly inhibited. After that he took the opportunity to be involved in clinical trials in which he got a new Kinase Inhibitor drug for 9 months. From diagnosis he had overall 2.5 years of relatively normal life. He was only really ill for the last couple of months. This was a good deal. 80% of people presenting his exact cancer are dead inside 6 months. 100% of people with cirrhosis of the liver will die painfully without transplant. https://en.wikipedia.org/wiki/Cirrhosis_of_the_liver it is not pretty. Morphine is truly the most important pharmaceutical ever utilised.
So, for your information. HCV transmission method is blood to blood. Obviously (ex) IV drug users are at high risk. I believe this is the way my father contracted it, as a teenager in the 60s. Other more mundane but no less obvious methods are sharing razors/toothbrushes and one for anyone who might have at some point used a shared tube or rolled up banknote to sniff anything - the blood vessels in your nose are incredibly fine and delicate, and it is quite possible to mix blood without any being visible. Don't take offense, I am not advocating nor implying anything. I mention only as a conscientious addition to the listed transmission types that can be found on the wiki page linked above.
The crucial point I should make here is; In the UK if you go to the GUM clinic and ask for a blood test, you MUST ask SPECIFICALLY that you want to be tested for HCV otherwise it will not be done. HIV is automatic, but HCV is not. If you have anything in your past your can not be sure about, casual partners, drug use, tatoos etc.. get tested now. If you're unlucky, you'll get a 6 month chemo course and avoid all the complications above. My fathers expressed wish was that as many people as possible might benefit from his experience as possible, so is my motivation for my story to you, from my point of view as his full time carer. It has taken 3 years from the middle of my life, and filled them with mind bending stress. I had to fight tooth and nail to get him home to die with dignity. He got home 7 hrs before he died.
Regards,
Sam.