Liver cancer question....Mom diagnosed stage 4 hcc 4/2015 given 3-6 months

[RudyRuetigger]

Great link!

MD Anderson in Texas is amazing! But being in NY, the travel may cause more harm than good.

Sloan Kettering in NYC #2 is about 6.5 hrs away by car, and being from NJ for 30+ years before getting relocated, there is plenty of friends/family to stay with.

#'s 4,6,8 i am not heard of but are doable. #12, 25, I just got the ok for the out of network insurance bs cleared, sent her med records and waiting for a response. That #43 Roswell is a research center and just want guinea pigs for clinical trials. The medicine's they gave my mom (which failed in 3 other clinical trials for 3 different cancers, i found out after she started it and with out my knowing within 5 min of researching the web). They just keep trying the same failed Meds, Say they saw some bs in a petri dish so they get more funding and make empty promises of hope, with not 1 completed trial much past phase 1 with there pills of bs. So if anyone is ranked below those lying crooks its a fade.
TY Rudy, i am going to look into the Boston woman's facility for sure.
BH

Good to hear

Good luck chief

[Broke Homey]

I dont understand why a GP or Specialist wont suggest somewhere.
sure if its out of state or whatever, then they should still help to find the relevant people. You should never feel you are on your own with cancer.
Amercia is crazy, they just brush you off???

They recommended Roswell Institute. I was not at all happy with anything they did or lack of. Her Oncologist suggested MD anderson in Texas, Cleveland Clinic, UPMC Pittsburgh, and Sloan Kettering in NYC. MD & Sloan are ranked #1 and #2 in the country, but what i am trying to find out is if anyone knows a facility that specializes in the liver. Gall bladder, brain, skin, colon etc i can find specialists all day long, but liver specialists who treat HCC seems to be a issue.
BH

[Broke Homey]

well you should really look into why our healthcare system DO NOT CURE patients... did you know ronald reagan had colon cancer while he was our president but went to germany to get his treatment? but he had to keep the info hush hush. you say you're not a conspiracy theorist but it's all planned this way by design. whatever you do hope she gets better but stage 4 can be very tricky... gl

Ghengis,

I can show you some evidence that would blow your mind brother! But thats another thread all together. I dont want to lose focus on what i am looking for, a cancer treatment center which specializes in the liver.
I will peek at this video also tonight!
BH

[Broke Homey]

do not mention alternative medicine to your oncologist. they are part of the problem like the alleged physician posting in this thread. they will shut you down quicker than a hot chick at a club. trust me on this. i've been doing a lot of research on alternative cancer cures. cures are out there. it's being purposely suppressed. but it's not their fault, they were taught to follow the protocol.

There is a lot of truth in what you said. But i will not stay quiet, when they say there is no treatments, and i know there is. Or at the very least a more humane treatment than poisons fighting a poison. Her first visit to Roswell, The script pad came out and she was handed a months supply of methadone! Are you penetrating kidding me? She didnt even complain about any pain at all! But if they get ya hooked on the script, youll keep coming back or the trial like a lab rat. Pure pharmaceutical grade fire, no cut, no cost.....They are legalized dealers some of them, i swear...
BH

[Broke Homey]

Kahn, you are a fool sir. This guy's mother has stage 4 liver cancer and you're talking shit about alternative shit that doesn't work. What a joke. Western medicine works. None of the shit you promoted does. You've probably never been sick yourself or had someone around you sick. The last thing you wanna hear is someone promoting magical thinking and miracle cures.

LordV,
There is truths to what he says, but i do not want this to be a pissing match. I am looking for experience from others that have battled this journey.
I have witnessed MMJ and CO do amazing things. Getting either is not the problem, as a matter of fact i help soldiers with ptsd, and people with no insurance and no money get some sort of treatment. But again, i am not here to argue this. I just want a solid recommendation to a treatment center who specializes in liver cancer HCC.
BH

[Broke Homey]

Broke, Sorry to read that your Mother is not well.

I have nothing to add, other than that your Mom raised a good man that loves her - and it shows.

PittPlayer,
TY for the kind words!
BH

[Broke Homey]

i'm not advocating these will cure stage 4 liver cancer but people have been cured using alternative medicine. chemo on the other hand, 5 year survival rate is just ridiculously low.

There is no guarantees with anything, but CO is a much more humane and has shown tumors shrink or at least not grow. It helps with pain, the nausea, regulates blood pressure, stimulates appetite, slows down or stops seizures all together, and the list goes on and on. If you dont believe it, that is fine. A lot of people do not, then when there are no options left with traditional medicine, insurance is dried up and your loved one is a merely existing, becoming a person you almost dont recognize from all the weight loss, and so weak from the chemo that didnt work, only robbing them and you from quality time together. I usually get tracked down for help. I am not advocating "weed", this isnt about bong rips in the 7/11 parking lot in front of the police kind of reasons for legalization at all. Its about quality of life and options. Look at this https://sites.google.com/site/6630507/ or this http://www.google.com/patents/US5676977 or this http://www.google.com/patents/CA2741523A1?cl=en , no matter if you put any stock into it at all is your business, but you cant patent a plant, so Big Pharma can not monopolize the market and it would cut into so many of there "treatment medicines" that it would probably devastate their juggarnaut hold on everything. Treatment = big profit, a cure = minimal profits.
BH

[LordVodka]

also if western medicine works why did ronald reagan get treated in germany? answer that asshole.

Not familiar with Reagan's case but Western medicine is the best thing we have. Are you an oncologist? I've never heard a real scientist and cancer researcher talk about hidden cures and taking B17 to get cured. You sound like a nutcase who believes in conspiracies.

[Ralphie Halves]

Not familiar with Reagan's case but Western medicine is the best thing we have. Are you an oncologist? I've never heard a real scientist and cancer researcher talk about hidden cures and taking B17 to get cured. You sound like a nutcase who believes in conspiracies.

If you've only been in the USA, where they dismiss every other kind of treatment (because it's in their best interest to), of course you're going to think this way. And why is it "the best"? Because Westerners told you it was?

And what a great job the US has done, no? They have their own citizens calling others conspiracy theorists the minute they show other ways of doing things. I mean nobody is as good as North Korea when it comes to things like that, but we sure do a great job of it considering.

[Broke Homey]

i have a degree in mimg, what is your background? why don't you look up 5 year survival rate after chemo and comeback to me. chemo isn't the answer. yes, stage 4 is terminal. do you really think going to a doctor is gonna cure her? give me a fukking break pal. do some research on cancer and how our healthcare system works. watch the videos i posted and educate yourself. and i've had several family members go through chemo so stfu.

The 5 yr survival rate is very skewed and is based on patients who are in early stage 1/2 and were lucky enough to have a shot at life, and that is only less than a 3% success rate. Also, "Success rate does not equal = cured" 9/10 times it is just in remission and pops up somewhere else. I do want to say, "Dont get any of this twisted. Some people do have true success with traditional treatments and live long, cancer free, healthy lives. But truth be told, it is the lucky few who get diagnosed very, very early stage 1 and usually it is the more common cancer's like some skin cancers and breast cancer. I am not comparing 1 to another, they all are terrible, but a 8cm tumor is easier to remove from a breast than a brain tumor.

It does not matter what side of the fence you are on. There are believers and haters on every subject in life. Check out this video Kahn.. and get to know who he is.
BH

[chipper]

Sorry for both you and your Mom, cancer sucks....

[Broke Homey]

Sorry for both you and your Mom, cancer sucks....

Yes it does Chipper. Absolutely the most amazing thing i have ever witnessed, hands down. My Moms diagnoses and her fight evolved me as a human and look at things way different now.
BH

[Ghenghis Kahn]

The 5 yr survival rate is very skewed and is based on patients who are in early stage 1/2 and were lucky enough to have a shot at life, and that is only less than a 3% success rate. Also, "Success rate does not equal = cured" 9/10 times it is just in remission and pops up somewhere else. I do want to say, "Dont get any of this twisted. Some people do have true success with traditional treatments and live long, cancer free, healthy lives. But truth be told, it is the lucky few who get diagnosed very, very early stage 1 and usually it is the more common cancer's like some skin cancers and breast cancer. I am not comparing 1 to another, they all are terrible, but a 8cm tumor is easier to remove from a breast than a brain tumor.

It does not matter what side of the fence you are on. There are believers and haters on every subject in life. Check out this video Kahn.. and get to know who he is.
BH

you're correct. you've probably done a lot of research but at this state, don't let your mom go through chemo.

http://www.usatoday.com/story/news/2015/07/22/chemo-terminal-cancer/30535513/

yes i've known about dr. burzynski, he's been fighting the fda for two decades now.

[Ghenghis Kahn]

Not familiar with Reagan's case but Western medicine is the best thing we have. Are you an oncologist? I've never heard a real scientist and cancer researcher talk about hidden cures and taking B17 to get cured. You sound like a nutcase who believes in conspiracies.

say what you will, ronald reagan got treated with b17 and lived a cancer free life for 19 years after his treatment.

i've seen my family members go through hell from chemo. chemo isn't the way. even if i get cancer, i certainly won't go through chemo.

also, you've watched none of the videos i've posted. you're a mentally indolent brainwashed fool. i don't post conspiracies, i post real histories and truths.

[Ghenghis Kahn]

our school system will inculcate you with nonsense and lorvodka is the prime example of the outcome.

most of you have heard of tesla by now. royal raymond rife is tesla in the medical world... you certainly won't learn about this true genius in our incompetent school system.

[Broke Homey]

you're correct. you've probably done a lot of research but at this state, don't let your mom go through chemo.

http://www.usatoday.com/story/news/2015/07/22/chemo-terminal-cancer/30535513/

yes i've known about dr. burzynski, he's been fighting the fda for two decades now.

No, absolutely not. Chemo should just be called killya. Although they have been finding C/O and certain low dose types of chemo, having some positive results. But, no funding will be given for any clinical trials unless it is privately given i am sure on that.
BH

[Broke Homey]

you're correct. you've probably done a lot of research but at this state, don't let your mom go through chemo.

http://www.usatoday.com/story/news/2015/07/22/chemo-terminal-cancer/30535513/

yes i've known about dr. burzynski, he's been fighting the fda for two decades now.

It was his patients, who funded his legal defense after they seized all his assets, "oh shit, he might have something here! Better get a indictment going......
BH

[Ghenghis Kahn]

do you know if dr. burzynski is treating people or is he banned by the fda? i know fda stole some of his patents.

[StackinGreen]

If you've only been in the USA, where they dismiss every other kind of treatment (because it's in their best interest to), of course you're going to think this way. And why is it "the best"? Because Westerners told you it was?

And what a great job the US has done, no? They have their own citizens calling others conspiracy theorists the minute they show other ways of doing things. I mean nobody is as good as North Korea when it comes to things like that, but we sure do a great job of it considering.

Ralphie,

There's a big difference between having evidence and not having evidence. Any open minded scientist (radiation oncologist or medical oncologist) will tell you that we have particular, well studied data on survival rates for particular TNM staging. They don't recommend other things because ... there is no science behind them.

Not because "they don't work." We don't know if they do or not.

People with cancer live MUCH longer in the USA than in Europe. FACT. And it's not even close.

[Ghenghis Kahn]

Ralphie,

There's a big difference between having evidence and not having evidence. Any open minded scientist (radiation oncologist or medical oncologist) will tell you that we have particular, well studied data on survival rates for particular TNM staging. They don't recommend other things because ... there is no science behind them.

Not because "they don't work." We don't know if they do or not.

People with cancer live MUCH longer in the USA than in Europe. FACT. And it's not even close.

stackinggreen, you probably mean well but watch the royal rife documentary i posted. it might be too advanced for you but if you truly understand science, you wouldn't be spewing this nonsense. watch it this weekend when you have time. seriously...

you're just a product of the environment, it's not your fault.

[PittsburghPlayer]

Hey BrokeBrother, If there is anything that I can do for you, please, let me know. I am downwind of you on I-90 and have a lot of free time, and enough $ that I would not accept yours for my offer.
I know what it is like to watch a loved one, Mother hurt/suffer - you suffer with her.
Call me, especially if you are lacking a strong enough support system.
I can be where you are at in a matter of hours...
oh, like you - not fukking queer...
though have been taking advantage of the "new" shit wherever you need to shit laws!!
god damn it, what is wrong with this nation?
sorry, like you I tend to think/give a got damn about what matters to me, what is important...
if a man given the chance does not love his Mother, children, family...


p.s. Might you consider asking the administrators to alter the thread title some? Something without the word cancer maybe... keep Mother in thread title, please...
something about coming to the saloon and seeing that word, crushes my marijuana/beer buzz.
Cool...

[trobin31]

well you should really look into why our healthcare system DO NOT CURE patients... did you know ronald reagan had colon cancer while he was our president but went to germany to get his treatment? but he had to keep the info hush hush. you say you're not a conspiracy theorist but it's all planned this way by design. whatever you do hope she gets better but stage 4 can be very tricky... gl

What are you talking about, I worked personally with the colorectal surgeon who operated on Regans colon cancer at Bethesda naval center. It was localized and only required curative surgery. Never required chemo or some secret german medicine.

Homey, sorry to hear about your mother. It is great your mother has exceeded expectations thus far and it is likely a credit to the tremendous support network she has with you and your siblings.

After hearing about your story I took a look at the most recent guidelines for treatment for HCC, and also spoke with a collegue hepatologist. Not much has changed in the way of treatment for advanced HCC for a really long time. It looked like maybe sorafineb might extend some mortality but recent data shows it just increases morbidity and hospitalizations. Liver cells are highly regenerative and we really still don't have a clear understanding of the molecular biology driving the tumor genes. Add to this there are so many causes between hepatitis B and C, etoh, and various other toxins that there are likely numerous genes affected which make it even more difficult. Most cancers that can be cured are accomplished because we know the exactsequence of dna causing the cancer and can develop drugs to target the gene or the products it is able to produce. In liver cancer, we don't know the specific genes and there appear to be too many. Really the only cures are if the cancer has remained localized and not metastasized. I know you mentioned embolization was not initially offered but this is actually adherent with these guidelines as there are side effects to chemoembolization and not worth the risk unless clear evidence of vascular invasion leaves no option as it did when your mother bled.

I can't tell you what to do but I can only tell you what I would do if this were my mother. There are no more clinically proven options for this type of cancer. Facing this is hard but a necessary truth. Do you really want to drag your mother across country to be enrolled in another trial just to risk getting sick quicker and possibly passing away in some strange city in an unfamiliar hospital. I am not saying you have to give up living or trying to fight this but there comes a time when facing the truth and preparing for the inevitable will relieve a terrible burden for all of you. The thing that will keep her alive longer is getting rid of this stress of finding a solution that doesn't exist and allow you to start livin and enjoying time with each other. Pick a doctor you feel the most comfortable with and get the routine monitoring to prevent complications before they occur the best you can. You should ask your mother how she wants to pass away, at home? Hospice? Hospital? And start preparing for that day as best you can. Most ppl prefer to pass at home with their family and this takes planning. I hope my message is not getting misconstrued in any way but I see families struggle with this daily and it is the best advise that I can give.

[Broke Homey]

do you know if dr. burzynski is treating people or is he banned by the fda? i know fda stole some of his patents.

https://clinicaltrials.gov/ct2/show/NCT02742883?term=Burzynski&rank=1

You want the truth on how he got funded just ask.

[Broke Homey]

Hey BrokeBrother, If there is anything that I can do for you, please, let me know. I am downwind of you on I-90 and have a lot of free time, and enough $ that I would not accept yours for my offer.
I know what it is like to watch a loved one, Mother hurt/suffer - you suffer with her.
Call me, especially if you are lacking a strong enough support system.
I can be where you are at in a matter of hours...
oh, like you - not fukking queer...
though have been taking advantage of the "new" shit wherever you need to shit laws!!
god damn it, what is wrong with this nation?
sorry, like you I tend to think/give a got damn about what matters to me, what is important...
if a man given the chance does not love his Mother, children, family...


p.s. Might you consider asking the administrators to alter the thread title some? Something without the word cancer maybe... keep Mother in thread title, please...
something about coming to the saloon and seeing that word, crushes my marijuana/beer buzz.
Thank you...

Wow Brother thanks for the support! LOL I90 what a boring ride, east or west.

I made the thread hoping someone, somewhere had some true experience here. It was worth the finger pecking to take a shot. I am also on Cancer.org forum, Drug.com forum, Involved with Compassionate Care NY and other alternative movements, and Liver cancer HCC seems to be a tough find for a true "specialist". But i will keep asking and looking around, sooner or later i will find the right connection.

The thread name is probably a buzz kill, but its reality and maybe the words will catch the right eyes some day. I may be going to Pittsburgh in the next few weeks. If the travel is to much for her, i will just rent a home suite or hotel room near UPMC. We will see, Thanks for the kind words and support!
BH

[Broke Homey]

What are you talking about, I worked personally with the colorectal surgeon who operated on Regans colon cancer at Bethesda naval center. It was localized and only required curative surgery. Never required chemo or some secret german medicine.

Homey, sorry to hear about your mother. It is great your mother has exceeded expectations thus far and it is likely a credit to the tremendous support network she has with you and your siblings.

After hearing about your story I took a look at the most recent guidelines for treatment for HCC, and also spoke with a collegue hepatologist. Not much has changed in the way of treatment for advanced HCC for a really long time. It looked like maybe sorafineb might extend some mortality but recent data shows it just increases morbidity and hospitalizations. Liver cells are highly regenerative and we really still don't have a clear understanding of the molecular biology driving the tumor genes. Add to this there are so many causes between hepatitis B and C, etoh, and various other toxins that there are likely numerous genes affected which make it even more difficult. Most cancers that can be cured are accomplished because we know the exactsequence of dna causing the cancer and can develop drugs to target the gene or the products it is able to produce. In liver cancer, we don't know the specific genes and there appear to be too many. Really the only cures are if the cancer has remained localized and not metastasized. I know you mentioned embolization was not initially offered but this is actually adherent with these guidelines as there are side effects to chemoembolization and not worth the risk unless clear evidence of vascular invasion leaves no option as it did when your mother bled.

I can't tell you what to do but I can only tell you what I would do if this were my mother. There are no more clinically proven options for this type of cancer. Facing this is hard but a necessary truth. Do you really want to drag your mother across country to be enrolled in another trial just to risk getting sick quicker and possibly passing away in some strange city in an unfamiliar hospital. I am not saying you have to give up living or trying to fight this but there comes a time when facing the truth and preparing for the inevitable will relieve a terrible burden for all of you. The thing that will keep her alive longer is getting rid of this stress of finding a solution that doesn't exist and allow you to start livin and enjoying time with each other. Pick a doctor you feel the most comfortable with and get the routine monitoring to prevent complications before they occur the best you can. You should ask your mother how she wants to pass away, at home? Hospice? Hospital? And start preparing for that day as best you can. Most ppl prefer to pass at home with their family and this takes planning. I hope my message is not getting misconstrued in any way but I see families struggle with this daily and it is the best advise that I can give.

Trobin,

You sound like the real deal.
I have no false hope, I am a realist and know its all borrowed time now. She was offered sorafineb (chemo) but the side effects out way any chance of going that route.
Clinical Trials are not an option either, I wont let her be a lab rat, for a medicine or treatment that they are collecting data on to get more funding for a possible 2nd phase. She went down that road and we almost lost her.....
I have been slowly asking and finding out what and how she would like to things handled when she may no longer be lucid, to make any decisions at all. I also asked her "how she will let me know, she is still around after she passes", she said "look for pennies". Some real tough and emotional conversations that i do not wish anyone to go through.
What you said, is kind of what i expected. I think if there were anything available i would of heard something, but it doesnt hurt to keep trying. At least i can truly say, i looked every where and never gave up trying. Small constellation for what i will lose, but she will be out of pain then, so it is a wave of emotions.
TY, for your unedited, and non sugar coated truth. That goes miles with me, instead of false hope. Be well!
BH

[StackinGreen]

stackinggreen, you probably mean well but watch the royal rife documentary i posted. it might be too advanced for you but if you truly understand science, you wouldn't be spewing this nonsense. watch it this weekend when you have time. seriously...

you're just a product of the environment, it's not your fault.

Too advanced for me?

I'm a subspecialist physician

Do you know how many years I trained AFTER medical school? I really say that for no other reason except for unintentional, but blatant ignorance. It has nothing to do with ego, but rather with reality.

Please tell me one thing that I said that was "nonsense."

---
I'm only here because I want people to be educated about what we do and the scientific method, not myths.

TRobin appears similar in that regard.

[PittsburghPlayer]

Wow Brother thanks for the support! LOL I90 what a boring ride, east or west.

I-90 is not so bad. I know many bitch about the "toll", but if that is what it takes for a well-maintained Interstate...

Best to you and your Mom Bro`...

[Broke Homey]

I-90 is not so bad. I know many bitch about the "toll", but if that is what it takes for a well-maintained Interstate...

Best to you and your Mom Bro`...

Actually, i confused I-86 with I-90, when i replied. I-90 is not bad at all, I-86 is the pitts.

[PittsburghPlayer]

Actually, i confused I-86 with I-90, when i replied. I-90 is not bad at all, I-86 is the pitts.

I-86, bumpy ride and loaded with troopers...

Still, the scenery is pretty and ride is smooth enough in a big truck.

I sometimes like to take the back roads to the `burgh,
and will use 86 for 30 miles or so, bounce down into Penn through the forest...