Chronic HCV - sharing my education.

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.

bertieck476 · 03-20-13, 07:52 AM

A very sad and moving post, I cannot begin to think what it must be like to go through this, Im sorry for your loss, but Im glad you got him home to be with his family at the end.
Hopefully the time you have taken to write this will help others in the future and may save lives.

Bert.

AVGWarhawk · 03-20-13, 08:17 AM

Sorry to hear the passing of your dad. It is not a easy thing to comprehend. Pass along what you know. If the information saves one life of a thousand you tell, it was well worth it!

Herr-Berbunch · 03-20-13, 11:12 AM

Sam, you and your family have my sincerest condolances, and my thanks for sharing. Everyone deserves the right to die with dignity and I'm glad he made it home.

Takeda Shingen · 03-20-13, 11:14 AM

This is utterly tragic to hear, Sammi. You have my deepest sympathy and condolences.

CaptainHaplo · 03-20-13, 11:46 AM

May his soul find rest in the hand of the Creator.

Know you have honored his wish. My condolences to you and your family.

Penguin · 03-20-13, 11:54 AM

A really sad event, my condolences. Glad that your father could at least die in his own home in the arms of someone who loved him.

Good that you honor your father by raising awareness for this illness. During the 80s here in Germany we also learned much about AIDS, not too much about other deseases. I had an affair with a gitl who had hep c some years ago, this was the first time it really became aware to me. I think they test for it when you make an HIV test, but after reading what you wrote, it is certainly better to ask when you take such a test. (had my blood checked on several occasions, glad I never caught anything)

May happier times shine on you in the future, Sam!

August · 03-20-13, 12:03 PM

I can sympathize.

A good friend of mine passed away from the effects of Hep C many years ago. He didn't even know he had it until it had already destroyed his liver. He was a great guy and I still miss him as do the many hundreds of people who counted themselves as his friends.

My father also died from liver cancer although that was caused by Agent Orange exposure.

My sincere condolences for your loss.

u crank · 03-20-13, 04:46 PM

So sorry for your loss Sammi.

Thanks for sharing some valuable information that may help others.

eddie · 03-20-13, 05:43 PM

Very sorry to hear of your Fathers passing. Will keep a good thought for you and your family.

Feuer Frei! · 03-20-13, 05:45 PM

M thoughts go out to you, my condolences to you and your family.
Thanks for sharing your experiences and insight into this terrible disease.

magic452 · 03-21-13, 02:56 AM

Very sorry to here of your father's death but a very informative post.
May help someone avoid the same condition.

My prayers and condolences to you and your family.

Magic

frau kaleun · 03-21-13, 03:51 PM

I'm so sorry to hear of your loss, Sammi. My thoughts and best wishes will be with you and yours.

Cybermat47 · 03-21-13, 03:53 PM

I'm so sorry for your loss. Remember the good times you had with your Father.

Mork_417 · 03-22-13, 02:13 AM

Sorry for your loss. My thoughts go out to your family.

03-20-13, 06:55 AM	#1
Sammi79 XO Join Date: Jan 2010 Location: Penzance Posts: 428 Downloads: 272 Uploads: 0	Chronic HCV - sharing my education. 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. __________________ Gadewais fy beic nghadwyno i'r rhai a rheiliau, pan wnes i ddychwelyd, yno mae'n roedd... Wedi mynd.

03-20-13, 11:12 AM	#4
Herr-Berbunch Kaiser Bill's batman Join Date: May 2010 Location: AN72 Posts: 13,203 Downloads: 76 Uploads: 0	Sam, you and your family have my sincerest condolances, and my thanks for sharing. Everyone deserves the right to die with dignity and I'm glad he made it home. __________________

03-20-13, 11:46 AM	#6
CaptainHaplo Silent Hunter Join Date: Apr 2007 Posts: 4,404 Downloads: 29 Uploads: 0	May his soul find rest in the hand of the Creator. Know you have honored his wish. My condolences to you and your family. __________________ Good Hunting! Captain Haplo

03-20-13, 12:03 PM	#8
August Wayfaring Stranger Join Date: Apr 2005 Location: Massachusetts Posts: 23,197 Downloads: 0 Uploads: 0	I can sympathize. A good friend of mine passed away from the effects of Hep C many years ago. He didn't even know he had it until it had already destroyed his liver. He was a great guy and I still miss him as do the many hundreds of people who counted themselves as his friends. My father also died from liver cancer although that was caused by Agent Orange exposure. My sincere condolences for your loss. __________________ Flanked by life and the funeral pyre. Putting on a show for you to see. Last edited by August; 03-20-13 at 02:14 PM.

03-20-13, 04:46 PM	#9
u crank Old enough to know better Join Date: Dec 2011 Location: Prince Edward Island Posts: 11,744 Downloads: 136 Uploads: 0	So sorry for your loss Sammi. Thanks for sharing some valuable information that may help others. __________________ “Two possibilities exist: either we are alone in the Universe or we are not. Both are equally terrifying.” ― Arthur C. Clarke

03-20-13, 07:52 AM	#2
bertieck476 Chief Join Date: Mar 2010 Posts: 327 Downloads: 33 Uploads: 0	A very sad and moving post, I cannot begin to think what it must be like to go through this, Im sorry for your loss, but Im glad you got him home to be with his family at the end. Hopefully the time you have taken to write this will help others in the future and may save lives. Bert.

03-20-13, 08:17 AM	#3
AVGWarhawk Lucky Jack Join Date: Jun 2005 Location: In a 1954 Buick. Posts: 28,253 Downloads: 90 Uploads: 0	Sorry to hear the passing of your dad. It is not a easy thing to comprehend. Pass along what you know. If the information saves one life of a thousand you tell, it was well worth it!

03-20-13, 11:14 AM	#5
Takeda Shingen Navy Seal Join Date: Mar 2000 Posts: 8,643 Downloads: 19 Uploads: 0	This is utterly tragic to hear, Sammi. You have my deepest sympathy and condolences.

03-20-13, 11:54 AM	#7
Penguin Ocean Warrior Join Date: Mar 2010 Location: Rheinische Republik Posts: 3,322 Downloads: 92 Uploads: 0	A really sad event, my condolences. Glad that your father could at least die in his own home in the arms of someone who loved him. Good that you honor your father by raising awareness for this illness. During the 80s here in Germany we also learned much about AIDS, not too much about other deseases. I had an affair with a gitl who had hep c some years ago, this was the first time it really became aware to me. I think they test for it when you make an HIV test, but after reading what you wrote, it is certainly better to ask when you take such a test. (had my blood checked on several occasions, glad I never caught anything) May happier times shine on you in the future, Sam!

03-20-13, 05:43 PM	#10
eddie Ocean Warrior Join Date: Jan 2005 Location: Minnesota Posts: 3,023 Downloads: 99 Uploads: 0	Very sorry to hear of your Fathers passing. Will keep a good thought for you and your family.

03-20-13, 05:45 PM	#11
Feuer Frei! Navy Seal Join Date: Sep 2009 Location: Valhalla Posts: 5,295 Downloads: 141 Uploads: 17	M thoughts go out to you, my condolences to you and your family. Thanks for sharing your experiences and insight into this terrible disease. __________________ "History is the lies that the victors agree on"- Napoleon LINK TO MY SH 3 MODS

03-21-13, 02:56 AM	#12
magic452 Sea Lord Join Date: Sep 2007 Location: Reno Nevada USA Posts: 1,860 Downloads: 85 Uploads: 0	Very sorry to here of your father's death but a very informative post. May help someone avoid the same condition. My prayers and condolences to you and your family. Magic __________________ Reported lost 11 Feb. 1942 Signature by depthtok33l

03-21-13, 03:51 PM	#13
frau kaleun Rear Admiral Join Date: Nov 2009 Location: Skyri--oh who are we kidding, I'm probably at Lowe's. Again. Posts: 12,706 Downloads: 168 Uploads: 0	I'm so sorry to hear of your loss, Sammi. My thoughts and best wishes will be with you and yours.

03-21-13, 03:53 PM	#14
Cybermat47 Willing Webfooted Beast Join Date: Aug 2012 Location: Australia Posts: 5,408 Downloads: 300 Uploads: 23	I'm so sorry for your loss. Remember the good times you had with your Father. __________________ Historical TWoS Gameplay Guide: http://www.subsim.com/radioroom/showthread.php?p=2572620 Historical FotRSU Gameplay Guide: https://www.subsim.com/radioroom/sho....php?p=2713394

03-22-13, 02:13 AM	#15
Mork_417 Lieutenant Commander Join Date: Nov 2002 Location: DB-15 Posts: 851 Downloads: 263 Uploads: 0	Sorry for your loss. My thoughts go out to your family. __________________ Heading to AM49.(U-553)