Father just told first line chemotherapy has not worked

Alex2104

Hi,

My name is Alex and my 68 y/o father has secondary liver cancer resulting from colorectal cancer. He was first diagnosed with the colorectal cancer (small tumour in bowel) around 2 years ago. In December 2010 he had the tumour removed and it had returned as several Mets to the liver and small nodules on the lining next to the liver December 2011. He was put on chemotherapy. He has been on chemo now for around 3 months, and has completed one course. Today we have just returned from the NHS uk dr who advised the ct scan he just had shows the tumours have grown slightly (but not spread to any other areas) showing the chemo has not worked. They then said there is nothing more that can be done for him other than making him as comfortable as possible.
My father has suffered quite badly in the last few weeks of chemo which really started to take its toll. He maintains though that he feels okay within himself and now just wants to concentrate on building his strength up and exploring other options.
My mother and I are devastated by the condemning nature of the prognosis. We feel that although this chemo hasn't worked there are surely other options to try before giving up.
The dr's said they feel this was the best treatment for him, and given it didn't work and the tumours has increased slightly in size, nothing more is worth trying!!
I appreciate I haven't given you any details of his treatment regime, but I just want to know if anyone out there has also received such a condemning prognosis which turned out to be premature?
We don't want to give up yet and neither does my father. Surely failure of 1st line chemotherapy isn't the final stop on the treatment journey??
Is it worth getting more opinions? Will we just be giving ourselves false hope??

Any advice is most, most welcome.

Thanks. Alex

westie66

Your Father
Hi Alex: That is a familiar story on this website! Similar to my story. I was diagnosed with gallbladder cancer in late 2009 and had the gallbladder, its tumour, and some of the iver removed during surgery in April 2010. The surgeon noted mets to the peritoneum (abdomen lining which I think is what you describe). Because gallbladder cancer is so "lethal" I was given 2-3 months. But that didn't happen. I started chemo (cisplatin + gemcitibine) September 2010 and had 12 treatments (tolerated very well even though I am 68). One set of scans showed no evidence of cancer so we stopped chemo in joy! But the surgeon ordered a CT scan for incisional hernia surgery and that scan showed the peritoneum tumours were still there. So back on chemo. But this time my oncologist tried a chemo regime used in colon cancer - oxaliplatin + irenotecan + 5Fu + leucovin (called folfoxfiri). I had 12 treatments of that (and had to pay as it isn't covered in Canada if you don't have colon cancer). Last one was Nov 4. It did result in stabilization and even a bit of shrinkage. But then in January 2012, I had a CT scan that showed a met to the liver (which had been detected in January 2010!!!!!!! but never identified). So, now the situation is I can't have surgery to remove the peritoneum nodules (done in Alberta) with the liver met there and I can't have liver surgery with the peritoneum mets! However, I did meet with a liver surgeon today who may do the liver surgery as long as the peritoneum surgeon will do the peritoneum. Both surgeries are long and difficult. I am not sure they do the peritoneum surgery in England as several women on this website who have peritoneum cancer have not been able to get it.

Anyways, sorry to be so long winded but I would recommend another opinion. If surgery is still not possible, to try the folfoxfiri chemo regime as it seemed to work on mine. I had to pay for it but may have to go back on it if surgery isn't possible.

Keep me posted!

Cheryl

Lizystar

Do not give up
Alex,

Do not give up! In December of this year we were told that my dad's cancer had returned and that his only option for treatment was Nexavar (oral chemotherapy). His primary oncologist let us know that there were no additional treatments or surgeries because of some additional medical issues and a previous battle with Head and Neck Cancer. Our family was devastated, and I started looking for alternatives. I called every hospital in our state to find out who specialized in liver treatments and was directed to this website:http://www.clinicaltrials.gov/

I probably emailed 100 or so clinical trials before finding out about Therasphere. Believe me when I say there are many advanced stage cancer trials. They many not be in your area and they are probably not FDA approved, but there is still hope. I will let you know that I did receive a lot of rejections, so do not get discouraged. You may also not get into a stage 3 or 4 trial, but you never know when they will find the next working therapy!

I am also going to recommend that you read the book "Anti-Cancer" It was written by a Dr. who discovered his own brain tumor. He provides a lot of research and studies done on food, vitamins and toxins that we expose ourselves too. He lived 20 years with an aggressive tumor (13 years passed his life expectancy) The book gave me a new perspective, hope and a sense of empowerment. My dad is reading it now. I also find the whole foods website very helpful. It has a food search that will tell you the anti cancer/disease properties in what you are eating.

I know this is an incredibly difficult time in your life, and words truly cannot explain the multitude of emotions. I am/have been there too. The best thing anyone has ever said to me is this "The doctors are not God". Its hard to remember that, but they do not have the final say! They can only give you the statistics on those who passed after 1 day and those who lived 20 years. How much time he has is out of your control. Live each day at a time!

You are in my prayers!

Lizy

Alex2104

westie66 said:

Your Father
Hi Alex: That is a familiar story on this website! Similar to my story. I was diagnosed with gallbladder cancer in late 2009 and had the gallbladder, its tumour, and some of the iver removed during surgery in April 2010. The surgeon noted mets to the peritoneum (abdomen lining which I think is what you describe). Because gallbladder cancer is so "lethal" I was given 2-3 months. But that didn't happen. I started chemo (cisplatin + gemcitibine) September 2010 and had 12 treatments (tolerated very well even though I am 68). One set of scans showed no evidence of cancer so we stopped chemo in joy! But the surgeon ordered a CT scan for incisional hernia surgery and that scan showed the peritoneum tumours were still there. So back on chemo. But this time my oncologist tried a chemo regime used in colon cancer - oxaliplatin + irenotecan + 5Fu + leucovin (called folfoxfiri). I had 12 treatments of that (and had to pay as it isn't covered in Canada if you don't have colon cancer). Last one was Nov 4. It did result in stabilization and even a bit of shrinkage. But then in January 2012, I had a CT scan that showed a met to the liver (which had been detected in January 2010!!!!!!! but never identified). So, now the situation is I can't have surgery to remove the peritoneum nodules (done in Alberta) with the liver met there and I can't have liver surgery with the peritoneum mets! However, I did meet with a liver surgeon today who may do the liver surgery as long as the peritoneum surgeon will do the peritoneum. Both surgeries are long and difficult. I am not sure they do the peritoneum surgery in England as several women on this website who have peritoneum cancer have not been able to get it.

Anyways, sorry to be so long winded but I would recommend another opinion. If surgery is still not possible, to try the folfoxfiri chemo regime as it seemed to work on mine. I had to pay for it but may have to go back on it if surgery isn't possible.

Keep me posted!

Cheryl

Thanks Cheryl & Lizzy
Thanks for your kind words an support guys. It means a lot. My mum and I have now made contact with several oncologists for more opinions on my dads condition and various options open to us. We are still thinking positively. Having thought about it and rationalised it, although one professional has given up on us, if there is one thing I have learnt from CSN is that it is never too late and not stop fighting until the very end. There is just no point! If my dad is willing to keep fighting then so are we! Sure, the prognosis is now worse, but i have read inspiring stories about many people in far worse situations than we find ourselves in (as hard as it is to believe) and they have pulled through. I will definitely look into your suggestions, thank you. Are either of you familiar with immunology?
I wish you guys all the best on your journeys. If there is anything I can do, please let me know.

All the best.

Alex

MrsTigger

Lizystar said:

Do not give up
Alex,

Do not give up! In December of this year we were told that my dad's cancer had returned and that his only option for treatment was Nexavar (oral chemotherapy). His primary oncologist let us know that there were no additional treatments or surgeries because of some additional medical issues and a previous battle with Head and Neck Cancer. Our family was devastated, and I started looking for alternatives. I called every hospital in our state to find out who specialized in liver treatments and was directed to this website:http://www.clinicaltrials.gov/

I probably emailed 100 or so clinical trials before finding out about Therasphere. Believe me when I say there are many advanced stage cancer trials. They many not be in your area and they are probably not FDA approved, but there is still hope. I will let you know that I did receive a lot of rejections, so do not get discouraged. You may also not get into a stage 3 or 4 trial, but you never know when they will find the next working therapy!

I am also going to recommend that you read the book "Anti-Cancer" It was written by a Dr. who discovered his own brain tumor. He provides a lot of research and studies done on food, vitamins and toxins that we expose ourselves too. He lived 20 years with an aggressive tumor (13 years passed his life expectancy) The book gave me a new perspective, hope and a sense of empowerment. My dad is reading it now. I also find the whole foods website very helpful. It has a food search that will tell you the anti cancer/disease properties in what you are eating.

I know this is an incredibly difficult time in your life, and words truly cannot explain the multitude of emotions. I am/have been there too. The best thing anyone has ever said to me is this "The doctors are not God". Its hard to remember that, but they do not have the final say! They can only give you the statistics on those who passed after 1 day and those who lived 20 years. How much time he has is out of your control. Live each day at a time!

You are in my prayers!

Lizy

how is he doin wit nexavar
Hey Lizzy my name is Shay. How is your dad doing with the nexavar? The reason I am asking is because my dad is on it but cant take the full dose of it. He is 71 and has hcc with out the hepatitis nor is he a drinker. They have found several tumors through out his body. We are trying to do what we can to get him healthy again. He has lost a lot of weight. Any suggestions?

Shay

Lizystar

MrsTigger said:

how is he doin wit nexavar
Hey Lizzy my name is Shay. How is your dad doing with the nexavar? The reason I am asking is because my dad is on it but cant take the full dose of it. He is 71 and has hcc with out the hepatitis nor is he a drinker. They have found several tumors through out his body. We are trying to do what we can to get him healthy again. He has lost a lot of weight. Any suggestions?

Shay

Nexavar
Hi Shay,

My dad is 69 also HCC with no Hep. Unfortunately the Nexavar was not found effective and my Dad is about to start a new treatment called Therasphere.Do not get discouraged by this. There are many people being treated with Nexavar every day. My best advice is to purchase a lot of Ensure shakes and look up foods that will help support his immune system and that have anti-inflammatory properties. My Dad says the Butter Pecan flavor of Ensure is the best. He drinks them when he does not feel like eating a meal. They have been really helpful in keeping him healthy. Weight loss is a major concern so finding healthy foods he likes is essential.

In case you are interested there have been many published studies on the effects of Nexavar treatment with Vitamin K. Patients who consumed them together saw higher percentages of tumor shrinkage. Best sources of vitamin k in food are 1. cooked kale 2. cooked spinach (* Note Vitamin K is only released when cooked, eaten raw you primarily getting fiber). I hope this information helps!

Lizy

Lizystar

Alex2104 said:

Thanks Cheryl & Lizzy
Thanks for your kind words an support guys. It means a lot. My mum and I have now made contact with several oncologists for more opinions on my dads condition and various options open to us. We are still thinking positively. Having thought about it and rationalised it, although one professional has given up on us, if there is one thing I have learnt from CSN is that it is never too late and not stop fighting until the very end. There is just no point! If my dad is willing to keep fighting then so are we! Sure, the prognosis is now worse, but i have read inspiring stories about many people in far worse situations than we find ourselves in (as hard as it is to believe) and they have pulled through. I will definitely look into your suggestions, thank you. Are either of you familiar with immunology?
I wish you guys all the best on your journeys. If there is anything I can do, please let me know.

All the best.

Alex

immunology
HI Alex,

I have read about immunology but have not found any trials experimenting with treatment. From what I have read there is a lot of research being done on the development of vaccines and transplanting of T-cells to help fight off cancer. For lack of a better analogy your body's own immune system could win a cancer battle it just does not have the manpower to win the war. So by transplanting more T-cells to help combat the rapidly growing cells you are increasing your body's odds of curing itself. There was a really good article in Newsweek (Dec 19th, 2011 issue) if you want to read more. Not to get really nerdy on you, but the HPV vaccine to prevent cervical cancer in women is a result of immunology. Learning about this is what prompted my interest about nutrition and how to strengthen the immune system through diet & exercise.

Thank you for offering your support to me as well. This site has really helped me and I am happy we can help each other!

All my best to you too!
Lizy

Lizystar

Alex2104 said:

Thanks Cheryl & Lizzy
Thanks for your kind words an support guys. It means a lot. My mum and I have now made contact with several oncologists for more opinions on my dads condition and various options open to us. We are still thinking positively. Having thought about it and rationalised it, although one professional has given up on us, if there is one thing I have learnt from CSN is that it is never too late and not stop fighting until the very end. There is just no point! If my dad is willing to keep fighting then so are we! Sure, the prognosis is now worse, but i have read inspiring stories about many people in far worse situations than we find ourselves in (as hard as it is to believe) and they have pulled through. I will definitely look into your suggestions, thank you. Are either of you familiar with immunology?
I wish you guys all the best on your journeys. If there is anything I can do, please let me know.

All the best.

Alex

immunology
HI Alex,

I have read about immunology but have not found any trials experimenting with treatment. From what I have read there is a lot of research being done on the development of vaccines and transplanting of T-cells to help fight off cancer. For lack of a better analogy your body's own immune system could win a cancer battle it just does not have the manpower to win the war. So by transplanting more T-cells to help combat the rapidly growing cells you are increasing your body's odds of curing itself. There was a really good article in Newsweek (Dec 19th, 2011 issue) if you want to read more. Not to get really nerdy on you, but the HPV vaccine to prevent cervical cancer in women is a result of immunology. Learning about this is what prompted my interest about nutrition and how to strengthen the immune system through diet & exercise.

Thank you for offering your support to me as well. This site has really helped me and I am happy we can help each other!

All my best to you too!
Lizy

MrsTigger

Lizystar said:

Nexavar
Hi Shay,

My dad is 69 also HCC with no Hep. Unfortunately the Nexavar was not found effective and my Dad is about to start a new treatment called Therasphere.Do not get discouraged by this. There are many people being treated with Nexavar every day. My best advice is to purchase a lot of Ensure shakes and look up foods that will help support his immune system and that have anti-inflammatory properties. My Dad says the Butter Pecan flavor of Ensure is the best. He drinks them when he does not feel like eating a meal. They have been really helpful in keeping him healthy. Weight loss is a major concern so finding healthy foods he likes is essential.

In case you are interested there have been many published studies on the effects of Nexavar treatment with Vitamin K. Patients who consumed them together saw higher percentages of tumor shrinkage. Best sources of vitamin k in food are 1. cooked kale 2. cooked spinach (* Note Vitamin K is only released when cooked, eaten raw you primarily getting fiber). I hope this information helps!

Lizy

thanks Lizy
Thanks for the info. I try fixing him anything and everything he will eat. Did not know that about vit K. I will let him know for sure. Let me know please how that other works out for your dad please. I'm trying to find out all I can. Not to sure where to all look
For information on it all. Thanks again. I wish your dad the best of luck. Blessings to you and your family!

Shay