Aggressive stage 4 liver cancer-ideas for help

Cjka

Received dad's diagnosis last month. Given no treatment options due to tumor size, clotting in veins. Discouraged nexavar due to it's side effects. Dad not wanting to give up, but accepting this one doctors diagnosis. Dad still eating, visiting, but legs swollen so can't do much. I want to help at least with symptoms of swelling so that he could have more quality of life. Need help with any ideas for any of this...it is all very new and overwhelming!

vatsabhishek

Sorry about your Dad
Even my father is suffering from aggressive bile duct cancer with metastaic tumor (8 cm) in his liver. You can consult some other doctor as well who might give him some medication but i think so doctors discourage nexavar if the pateint is suffering from other things as the patients don't respond to the medication..

Cjka

vatsabhishek said:

Sorry about your Dad
Even my father is suffering from aggressive bile duct cancer with metastaic tumor (8 cm) in his liver. You can consult some other doctor as well who might give him some medication but i think so doctors discourage nexavar if the pateint is suffering from other things as the patients don't respond to the medication..

Thank-you for response. Is
Thank-you for response. Is your dad getting any treatments? Are you doing any alternative treatments. I feel so helpless doing nothing. I appreciate your kindness.

northa914

Second Opinion
So sorry to hear about your dad. Was his diagnosis and the decision to not administer any treatment from his general practitioner or his oncologist? And if it was from his oncologist, have you explored getting a second opinion? Were the reasons to forgo treatment based on other health issues? If nothing can be done regarding the cancer, can something can be done to make him more comfortable? Don't hesitate to ask a lot of questions. I was diagnosed last June with stage IV cholangiocarcinoma, mets to my liver (one 11 cm, one 5 cm, and numerous smaller lesions) and bones (bone masses). As hopeless as it seemed, I was immediately given a chemo combination of Gemzar/cisplatin and had two chemoembolizations, one last November and one this March. The liver lesions have been controlled by the systemic chemo, and have begun to shrink due to the embolizations. My sister - who acts as my advocate and is my angel - asked a lot of questions and is always exploring other options for my situation should my oncologists decide there is nothing more they can do for me. It's important to exhaust all avenues, especially if your dad does not want to give up.

Take care. I hope you find someone who can help your dad. Lots of hugs for the two of you!

Cjka

northa914 said:

Second Opinion
So sorry to hear about your dad. Was his diagnosis and the decision to not administer any treatment from his general practitioner or his oncologist? And if it was from his oncologist, have you explored getting a second opinion? Were the reasons to forgo treatment based on other health issues? If nothing can be done regarding the cancer, can something can be done to make him more comfortable? Don't hesitate to ask a lot of questions. I was diagnosed last June with stage IV cholangiocarcinoma, mets to my liver (one 11 cm, one 5 cm, and numerous smaller lesions) and bones (bone masses). As hopeless as it seemed, I was immediately given a chemo combination of Gemzar/cisplatin and had two chemoembolizations, one last November and one this March. The liver lesions have been controlled by the systemic chemo, and have begun to shrink due to the embolizations. My sister - who acts as my advocate and is my angel - asked a lot of questions and is always exploring other options for my situation should my oncologists decide there is nothing more they can do for me. It's important to exhaust all avenues, especially if your dad does not want to give up.

Take care. I hope you find someone who can help your dad. Lots of hugs for the two of you!

First, thank- you for some
First, thank- you for some hope! Second I wish you all of the best in your treatment, and third I thank you for caring and responding. General practitioner diagnosed type of cancer wrong; told us to go home and do Hospice. We called one oncologist from a smaller hospital; he said no treatment options except possibly nexavar but discouraged that. We were in such shock because my dad had been healthy up to the liver symptoms, had no predisposing conditions for liver cancer. Only had GERD history, which confused the symptoms for awhile. gERD getting worse must have been the cancer. Now it is one month later, dad is not giving up but the cancer symptoms are worse. I look everywhere for ideas on treatment but I am so afraid to discourage him again by offering hope and then nothing. I want to be like your wonderful sister, but (again) am so afraid of falsely getting his hopes up. I was with him most of the week-end and it is just agonizing to me to see him trying so hard and doing nothing with treatment. He has liver lesions, and it seems the reason oncologist said no treatment was in part due to clotting in the veins caused by the cancer. Also the cancer was said to be aggressive. I look into options late into every night or very early in am so that I can have a somewhat 'normal' day, but this never ever leaves my mind. I would do anything for him. Your reply has encouraged me. Thank-you, it sounds as if you tolerated the chemo and the embolizations well? It is great that you have an angel on your side.....again I thank-you and wish you the best, and for continued positive results from the embolization; and I wish your sister continued energy for her advocacy.

northa914

Cjka said:

First, thank- you for some
First, thank- you for some hope! Second I wish you all of the best in your treatment, and third I thank you for caring and responding. General practitioner diagnosed type of cancer wrong; told us to go home and do Hospice. We called one oncologist from a smaller hospital; he said no treatment options except possibly nexavar but discouraged that. We were in such shock because my dad had been healthy up to the liver symptoms, had no predisposing conditions for liver cancer. Only had GERD history, which confused the symptoms for awhile. gERD getting worse must have been the cancer. Now it is one month later, dad is not giving up but the cancer symptoms are worse. I look everywhere for ideas on treatment but I am so afraid to discourage him again by offering hope and then nothing. I want to be like your wonderful sister, but (again) am so afraid of falsely getting his hopes up. I was with him most of the week-end and it is just agonizing to me to see him trying so hard and doing nothing with treatment. He has liver lesions, and it seems the reason oncologist said no treatment was in part due to clotting in the veins caused by the cancer. Also the cancer was said to be aggressive. I look into options late into every night or very early in am so that I can have a somewhat 'normal' day, but this never ever leaves my mind. I would do anything for him. Your reply has encouraged me. Thank-you, it sounds as if you tolerated the chemo and the embolizations well? It is great that you have an angel on your side.....again I thank-you and wish you the best, and for continued positive results from the embolization; and I wish your sister continued energy for her advocacy.

Second Opinion
Please hang in there. I know it's daunting, and there are times when we want to give up but we keep pushing through. I'm not sure what facilities you have available to you, but here is what my sister did for me. As soon as I was diagnosed, my sister contacted my insurance company to find out what their rules were regarding a second opinion. They (Blue Shield) informed her that I could go to any facility including out-of-network. We chose City of Hope (I'm in Southern California). The liver cancer specialist looked at my scans, biopsy slides, and original diagnosis and concurred with what my original diagnosis and what was to be my administered treatment. My original diagnosis was on June 15, 2010; on July 7th I started my first cycle of chemo. I would have started earlier, but a case of pancreatitis kept me in the hospital for five days. Part of the reason I was able to receive referrals, treatments, etc. stat was my primary care physician that first diagnosed my cancer. Though he didn't stage it, he knew it was serious and pushed my insurance company to authorize everything necessary. I actually went to him for a chronic cough I had since a bad cold about a year prior, and asked about a swelling in my upper-right abdomen. He immediately ordered a scan, ordered a biopsy, and referred me to an oncologist within one week. I have fared well with my both my systemic chemo and embolizations. The side effects have so far been mild, I have developed neuropathy from the cisplatin (numbing in my hands and feet) and chemo-brain (can't think clearly or focus sometimes). One of the drugs I received during my embolizations did cause me to lose my hair, but hey, you can't have a bad hair day when you ain't got none!

Along with my chemo I do take a lot of supplements as complementary therapy. Mainly mushroom extracts and other immune system boosters, and of course a good multivitamin. Push for that second opinion. You may even be able to get one from a facilty of your choosing out of your area that will review his scans, etc. before scheduling an appointment to see what can be done. City of Hope asked for all of my info before they had me speak to their specialist so they could have all of their ducks in order at the time of my consultation.

Please let us know what happens. Unfortunately what ties us together is cancer, but we're here for each other!

Cjka

northa914 said:

Second Opinion
Please hang in there. I know it's daunting, and there are times when we want to give up but we keep pushing through. I'm not sure what facilities you have available to you, but here is what my sister did for me. As soon as I was diagnosed, my sister contacted my insurance company to find out what their rules were regarding a second opinion. They (Blue Shield) informed her that I could go to any facility including out-of-network. We chose City of Hope (I'm in Southern California). The liver cancer specialist looked at my scans, biopsy slides, and original diagnosis and concurred with what my original diagnosis and what was to be my administered treatment. My original diagnosis was on June 15, 2010; on July 7th I started my first cycle of chemo. I would have started earlier, but a case of pancreatitis kept me in the hospital for five days. Part of the reason I was able to receive referrals, treatments, etc. stat was my primary care physician that first diagnosed my cancer. Though he didn't stage it, he knew it was serious and pushed my insurance company to authorize everything necessary. I actually went to him for a chronic cough I had since a bad cold about a year prior, and asked about a swelling in my upper-right abdomen. He immediately ordered a scan, ordered a biopsy, and referred me to an oncologist within one week. I have fared well with my both my systemic chemo and embolizations. The side effects have so far been mild, I have developed neuropathy from the cisplatin (numbing in my hands and feet) and chemo-brain (can't think clearly or focus sometimes). One of the drugs I received during my embolizations did cause me to lose my hair, but hey, you can't have a bad hair day when you ain't got none!

Along with my chemo I do take a lot of supplements as complementary therapy. Mainly mushroom extracts and other immune system boosters, and of course a good multivitamin. Push for that second opinion. You may even be able to get one from a facilty of your choosing out of your area that will review his scans, etc. before scheduling an appointment to see what can be done. City of Hope asked for all of my info before they had me speak to their specialist so they could have all of their ducks in order at the time of my consultation.

Please let us know what happens. Unfortunately what ties us together is cancer, but we're here for each other!

I will call today to see
I will call today to see about coverage of the second opinion. I had not thought about doing that. Just assumed it would be covered. He also has a blue cross plan and medicare. Also, do you use the e-tea that I read about? (I believe it is called Essiac tea). How did you know which supplements to choose for complementary? I have read about many; wasn't sure how to narrow it all down.

I will certainly let you know what happens; you are so kind. Will the chemo brain get better as time goes on?....I'm glad the side effects of the chemo have been mild for you...and most importantly that you are survivor. It sounds like you have a very positive attitude....and here you are helping others also. Thanks again and I wish you a good day!

northa914

Cjka said:

I will call today to see
I will call today to see about coverage of the second opinion. I had not thought about doing that. Just assumed it would be covered. He also has a blue cross plan and medicare. Also, do you use the e-tea that I read about? (I believe it is called Essiac tea). How did you know which supplements to choose for complementary? I have read about many; wasn't sure how to narrow it all down.

I will certainly let you know what happens; you are so kind. Will the chemo brain get better as time goes on?....I'm glad the side effects of the chemo have been mild for you...and most importantly that you are survivor. It sounds like you have a very positive attitude....and here you are helping others also. Thanks again and I wish you a good day!

E-tea
I haven't tried the E-tea (Essiac tea) yet, though I'm considering adding it to my arsenal of supplements. My primary oncologist recommended Essiac and shiitake mushroom extract and I took it from there. I chose the mushroom extracts after doing some research about the ones that would boost my immune system and/or benefit my liver. I asked my oncologist about each one before I started using each to make sure I wouldn't compromise the effectiveness of my chemo. I'd be happy to give you the list of all the supplements I take if you'd like. The site where I purchase my mushroom extracts is cordycepsreishiextracts.com. The site has a chart of each extract's reputed benefits which helped make my decision.

The chemo-brain may or may not get better once I'm off chemo-therapy. Some days are better than others, and it does get worse when I'm tired. I've found that if I write everything down it helps tremendously. And my friends and family are very understanding, we get a good laugh at some of the stuff that comes out of my mouth and how I misinterpret what's being said! It's like having auto-correct in my brain where the wrong words are thrown in and I get to figure out what was said..if I can focus It's really not that bad, more annoying than anything. And I'll do whatever I have to to beat this disease!

Hope you get good news about a second opinion and are able to go to a premiere facility. It would make my day to know you are making progress! Lots of hugs to you and your dad!!!

Cjka

northa914 said:

E-tea
I haven't tried the E-tea (Essiac tea) yet, though I'm considering adding it to my arsenal of supplements. My primary oncologist recommended Essiac and shiitake mushroom extract and I took it from there. I chose the mushroom extracts after doing some research about the ones that would boost my immune system and/or benefit my liver. I asked my oncologist about each one before I started using each to make sure I wouldn't compromise the effectiveness of my chemo. I'd be happy to give you the list of all the supplements I take if you'd like. The site where I purchase my mushroom extracts is cordycepsreishiextracts.com. The site has a chart of each extract's reputed benefits which helped make my decision.

The chemo-brain may or may not get better once I'm off chemo-therapy. Some days are better than others, and it does get worse when I'm tired. I've found that if I write everything down it helps tremendously. And my friends and family are very understanding, we get a good laugh at some of the stuff that comes out of my mouth and how I misinterpret what's being said! It's like having auto-correct in my brain where the wrong words are thrown in and I get to figure out what was said..if I can focus It's really not that bad, more annoying than anything. And I'll do whatever I have to to beat this disease!

Hope you get good news about a second opinion and are able to go to a premiere facility. It would make my day to know you are making progress! Lots of hugs to you and your dad!!!

I called today for a second
I called today for a second opinion; have not yet heard back but moving in the right direction. Really worried about what we will hear, so I wanted to have some other ideas such as the e-tea and milk thistle to both ask about and/or fall back on. I live in the Midwest where most physicians are very conservative and don't often mention alternatives. I read much about nutrition also, but right now we are happy that my dad is eating. We make sure he gets fruits and vegetables of course. It's great that your oncologist recommends and provides help on this. I will be checking out the site you offered.

How great that you and your family can laugh about the annoying effects of the chemo on the brain. And your strength and desire to fight are admirable (as is the willingness to help here).


I'll be checking with insurance tomorrow. I wish you a good night and a good day tomorrow...and of course continued healing!!

Cjka

vatsabhishek said:

Sorry about your Dad
Even my father is suffering from aggressive bile duct cancer with metastaic tumor (8 cm) in his liver. You can consult some other doctor as well who might give him some medication but i think so doctors discourage nexavar if the pateint is suffering from other things as the patients don't respond to the medication..

Thanks for your response. I
Thanks for your response. I am sorry for you and your dad also. Is he receiving any treatment? I wish you the best as I know how very hard this is.

northa914

Cjka said:

I called today for a second
I called today for a second opinion; have not yet heard back but moving in the right direction. Really worried about what we will hear, so I wanted to have some other ideas such as the e-tea and milk thistle to both ask about and/or fall back on. I live in the Midwest where most physicians are very conservative and don't often mention alternatives. I read much about nutrition also, but right now we are happy that my dad is eating. We make sure he gets fruits and vegetables of course. It's great that your oncologist recommends and provides help on this. I will be checking out the site you offered.

How great that you and your family can laugh about the annoying effects of the chemo on the brain. And your strength and desire to fight are admirable (as is the willingness to help here).


I'll be checking with insurance tomorrow. I wish you a good night and a good day tomorrow...and of course continued healing!!

Milk Thistle and Essiac
Don't fear what may be said during a second opinion. It will give you a point to start from as far as treatments for your dad. You can always get more opinions, although insurance may not pay for them. The Interventional Radiology team at USC Norris Cancer Hospital who administered my embolizations let me know that my oncologist who directed the procedure often takes patients who have been declined by other oncologists for treatment if he feels the individual is a viable candidate.

It's great that your dad is not only eating, but eating a healthy diet as well. I'm on the see-food diet as I have a hard time keeping weight on naturally, but I eat the healthy stuff as well as the not-so-healthy junk. Milk thistle is one of the supplements I take, 250mg(one capsule) twice per day. The recommended dosage per the bottle is one capsule three times per day, which I do on occasion. I tend to take a lesser dose of some of my supplements as I'm 5'0" tall and 95 lbs. Artichokes, which are related to milk thistle, contain silymarin (the substance in milk thistle supplements) and cynarin which are supposed to benefit the liver. Good thing I love them, and they're in season right now! I haven't tried Essiac tea yet, but will add that to my arsenal soon. There's a posting regarding the success of E-tea under "Any hepatocellular liver cancer survivors out there?". It's posted by laurieliete and is dated June 9, 2011. You'll find it close to the bottom of the page. When discussing the use of supplements with your oncologist(s), ask about complementary therapies which is the category their use falls under. Alternative therapies are ones that fall outside of the standard therapies (ie surgery, chemotherapy), and are usually used by those who don't want or are not able to tolerate standard therapies.

Hope this helps!

Cjka

northa914 said:

Milk Thistle and Essiac
Don't fear what may be said during a second opinion. It will give you a point to start from as far as treatments for your dad. You can always get more opinions, although insurance may not pay for them. The Interventional Radiology team at USC Norris Cancer Hospital who administered my embolizations let me know that my oncologist who directed the procedure often takes patients who have been declined by other oncologists for treatment if he feels the individual is a viable candidate.

It's great that your dad is not only eating, but eating a healthy diet as well. I'm on the see-food diet as I have a hard time keeping weight on naturally, but I eat the healthy stuff as well as the not-so-healthy junk. Milk thistle is one of the supplements I take, 250mg(one capsule) twice per day. The recommended dosage per the bottle is one capsule three times per day, which I do on occasion. I tend to take a lesser dose of some of my supplements as I'm 5'0" tall and 95 lbs. Artichokes, which are related to milk thistle, contain silymarin (the substance in milk thistle supplements) and cynarin which are supposed to benefit the liver. Good thing I love them, and they're in season right now! I haven't tried Essiac tea yet, but will add that to my arsenal soon. There's a posting regarding the success of E-tea under "Any hepatocellular liver cancer survivors out there?". It's posted by laurieliete and is dated June 9, 2011. You'll find it close to the bottom of the page. When discussing the use of supplements with your oncologist(s), ask about complementary therapies which is the category their use falls under. Alternative therapies are ones that fall outside of the standard therapies (ie surgery, chemotherapy), and are usually used by those who don't want or are not able to tolerate standard therapies.

Hope this helps!

Thanks; just read that post
Thanks; just read that post and then lost it! I was going to post a couple of questions there. I did recently buy milk thistle-have to get everything together to get a start. I will remember complementary vs. Alternative. Happy to see you eat both healthy and sometimes a bit less than healthy as he sometimes wants sweet things or fried things and we don't want to restrict those.

Once again, I appreciate your information. You are so knowledgeable and willing to share the knowledge! It has taken me some time to recover from hearing the diagnosis and my 'numbness' made me incapable of even thinking for awhile. Now I want to do something, and my dad wants the options and info so thanks again so much. Have a good and restful night.

SarahD

Cjka said:

Thanks; just read that post
Thanks; just read that post and then lost it! I was going to post a couple of questions there. I did recently buy milk thistle-have to get everything together to get a start. I will remember complementary vs. Alternative. Happy to see you eat both healthy and sometimes a bit less than healthy as he sometimes wants sweet things or fried things and we don't want to restrict those.

Once again, I appreciate your information. You are so knowledgeable and willing to share the knowledge! It has taken me some time to recover from hearing the diagnosis and my 'numbness' made me incapable of even thinking for awhile. Now I want to do something, and my dad wants the options and info so thanks again so much. Have a good and restful night.

Hi CJKA how old is your dad?
Hi CJKA how old is your dad? My dad was diagnosed in march 2010 same thing as yours no risk factors and very healthy he was 54 at the time! it reallyy stinks and im still numb and in disbelief, just try to take one day at a time