Woman refuses child chemo due to side effects

Stheno

Linky

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects, some of those that she claims (like loss of IQ sound a big OTT?)

El Guapo!

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Sir Digby Chicken Caesar

other medical treatments or crystals and diluted water?

El Guapo!

Sir Digby Chicken Caesar wrote: »

other medical treatments or crystals and diluted water?

Other medical treatments. None of that hippy crap.

Stheno

Sir Digby Chicken Caesar wrote: »

other medical treatments or crystals and diluted water?

Hyperbaric chamber seems to be one.

having had family members survive chemo and radio therapy I'd be in favour of those treatments.

areyawell

Dean09 wrote: »

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Really? What other treatments? Chemo is bad but it will save your life depending on the type of cancer or slow down the growth if cant be cured.
It is bad but it depends on the dosage. High dosage means you'll be sick and bed ridden, medium or low dosage you'll just be tired with moderate sickness.

dxhound2005

Stheno wrote: »

Linky

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects, some of those that she claims (like loss of IQ sound a big OTT?)

I think your headline may be wrong if what I heard on the BBC radio news is correct. She agreed to chemotherapy treatment but refused to agree to radiotherapy treatment.

professore

Depending on the cancer chemo can be completely useless but the hospital will still offer it, and I am speaking from personal experience.

El Guapo!

areyawell wrote: »

Really? What other treatments? Chemo is bad but it will save your life depending on the type of cancer or slow down the growth if cant be cured.
It is bad but it depends on the dosage. High dosage means you'll be sick and bed ridden, medium or low dosage you'll just be tired with moderate sickness.

Yeah but if you had an aggressive form of cancer and needed a relatively high dosage for a long period of time, the chemo can do more damage than the cancer itself.
I've seen the effects of chemo on a family member and it ain't pretty.
I've also read a few cases where a patients cancer was cured but they subsequently died as a result of chemotherapy. I just think I'd rather find a safer alternative rether than rot away in a hospital bed, too sick to lift my own head while waiting to die.

Seaneh

Stheno wrote: »

Linky

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects, some of those that she claims (like loss of IQ sound a big OTT?)

That child should be taken out of her care.
This is no different than some gob****e Jehova's Wittness refusing a blood transfusion of organ transplant.

The child has a cancer, and if left untreated, will die. Her idiocy, which is probably fuelled by gob****es on message boards saying things like "chemo is poison" or "Chemo just makes you sicker", who have no clue what the actual mechanism involved with chemotherapy or how it works or why it works, is risking her child's life.


She's probably one of the idiots who read Rick Simpson's book.


The world is full of muppets.



The child needs Radiotherapy, not chemo, they are different, same rant applies though.

professore

Ok so its a brain tumor. Radiotherapy is the only useful treatment.

Dean09

Dean09 wrote: »

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Cancer is a damn sight more poisonous to your life than chemo is.

If I had cancer and I was told a combination of heroin, nuclear fallout and arsenic would get me my life to live, I'd take it in a heartbeat.

Stheno

dxhound2005 wrote: »

I think your headline may be wrong if what I heard on the BBC radio news is correct. She agreed to chemotherapy treatment but refused to agree to radiotherapy treatment.

I read she refused all treatment that was not natural and kidnapped the child t avoid it, child ended up in foster care and with his father.

She wants natural treatment and is objecting to the agressive treatment suggested.

El Guapo!

Seaneh wrote: »

Her idiocy, which is probably fuelled by gob****es on message boards saying things like "chemo is poison" or "Chemo just makes you sicker", who have no clue what the actual mechanism involved with chemotherapy or how it works or why it works, is risking her child's life.
.

Is that aimed at me??
Because if it is, I never said she shouldn't do it. I can't comment on that situation.
All I said was that I wouldn't avail of the treatment for myself.

Stheno

Dean09 wrote: »

Yeah but if you had an aggressive form of cancer and needed a relatively high dosage for a long period of time, the chemo can do more damage than the cancer itself.
If seen the effects of chemo on a family member and it ain't pretty.
I've also read a few cases where a patients cancer was cured but they subsequently died as a result of chemotherapy. I just think I'd rather find a safer alternative rether than rot away in a hospital bed, too sick to lift my own head while waiting to die.

I've seen the effects of chemo and radiotherapy on a family member and gotten to enjoy their company for five more years as a result?

Mickey H

Seems like an odd thing to do if you ask me.

Seaneh

Dean09 wrote: »

Is that aimed at me??
Because if it is, I never said she shouldn't do it. I can't comment on that situation.
All I said was that I wouldn't avail of the treatment for myself.

No, seriously, no, it's not. Didn't see your post until after I posted it.

It's aimed at the self appointed "experts" all over the internet who propagate nonsense like RickSimpsonOil (snake oil) as a cure all for cancer and say stuff like Chemo kills people and radiation therapy doesn't work, etc...


The internet is swimming in them.

Dingle_berry

The article in the link only refers to the radiotherapy? No mention of the chemotherapy being contested?
She is absolutely right to question the treatment and weigh any side effects resulting from it. No doctor I know would just sit back and blindly accept the first treatment offered to them without research and/or a second opinion so why should this mother?
If she allows her son to receive this therapy, what is the risk of him having a stroke that causes him to lose one or more of his senses? Or control of his muscles? How does that risk compare to the risk of no radio after the tumour has been surgically excised?
Are there other therapies out there that aren't being offered because they're not available in the UK or his doctors don't have experience with them or they are only in clinical trials? What are the risks with other therapies?
None of that is mentioned in the article. She's a good mother for taking such an interest in her child's treatment. I hope she gets to make a more informed decision with the father that helps their son.

El Guapo!

Stheno wrote: »

I've seen the effects of chemo and radiotherapy on a family member and gotten to enjoy their company for five more years as a result?

Yeah I've seen it too. And it did lengthen their life. But their quality of life was seriously lowered for that extra time.
Just my experience and opinion.
I may be wrong. And I know it has worked wonders and cured other people so its not all bad. It's different for everyone I guess.

DEFTLEFTHAND

Chemo is an awful experience for anyone to have to go through but its the only proven chance of recovery with cancer. I'm worried about these alternative treatments people seem to be going for, the late Robin Gibb of the Bee Gees thought sitting in a sauna sweating out the impurities could cure him.

DonLimon

Social services should have stepped in the moment she called her child Neon.

El Guapo!

DEFTLEFTHAND wrote: »

Chemo is an awful experience for anyone to have to go through but its the only proven chance of recovery with cancer. I'm worried about these alternative treatments people seem to be going for, the late Robin Gibb of the Bee Gees thought sitting in a sauna sweating out the impurities could cure him.

The people who suggest "cures" like that should be arrested. Like that guy on YouTube who says he can cure cancer with bananas! That guy should be locked up.

Seaneh

Dean09 wrote: »

Yeah I've seen it too. And it did lengthen their life. But their quality of life was seriously lowered for that extra time.
Just my experience and opinion.
I may be wrong. And I know it has worked wonders and cured other people so its not all bad. It's different for everyone I guess.

It really depends on what form of cancer you have, what stage it is at, and a few other factors as to whether or not it will save you or just give you a little longer.


I know if I had stage 2 testicular cancer I'd be getting Chemo, radiationtherapy and Laparoscopic surgery to remove any affected lymph nodes ASAP.

El Guapo!

Slightly off topic but has anyone seen the documentary "Burzynski"? Really interesting documentary. It may be s bit one sided but its well worth a watch. http://m.imdb.com/title/tt1632703/

MUSEIST

I would imagine the issue she has is with the radiotherapy which can cause long term brain damage to growing children and have a profound impact on the quality of life. On the other hand he will die within months without treatment, it's a nightmare decision to have to make so I have a certain sympathy.

TheFisherKing

Stheno wrote: »

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects..

No she doesn't. Maybe read a few news sources and not just cherry pick from one:

Every parent’s worst nightmare began for the pair last August, when Neon started suffering from severe headaches. Sally also noticed that his neck was swollen.

After going back and forth to the doctor, they finally got a hospital appointment on October 23.

The following day, Neon was given an MRI brain scan and at 4pm Mrs Roberts and her mother, Lilian, were given the news they dreaded. Neon had a medulloblastoma, an aggressive, malignant brain tumour in his cerebellum, above the neck.

Your whole world collapses in front of you,’ says Mrs Roberts. ‘I think I said: “I can’t cope.” I nearly crumbled on to the floor. But you have to cope.’

With no time to be lost, the very next day Neon was taken to the operating theatre, where he spent nine hours in surgery. His mother attempts to describe what those nine hours were like, but breaks down in tears before she can complete the story.

‘It was horrific,’ she says. ‘The emotion, the fear, it’s totally overwhelming. Words can’t explain it.’

Thankfully, the operation was a success and doctors managed to remove the entire tumour.

‘It was the best we could have hoped for,’ she says. ‘But we didn’t know for sure until another scan three weeks later that none of the tumour had been left behind. We were incredibly anxious.

‘Neon was so poorly. He was struggling to get his words out and to move about. I spent the next three weeks with him in hospital, and Ben was there, too.

‘The amazing thing was how well Neon recovered. When he left hospital he was almost back to normal.

‘The way it’s been presented, you would think Neon is desperately sick. But he is running around, really bouncy, it’s incredible.’

A few days after Neon was discharged, Mrs Roberts met a consultant at the hospital to discuss the next stage of his care. This was to be a turning point.
‘We were talking about lots of things to do with Neon’s treatment. The doctor said he would need radiotherapy across all his brain.

‘When I questioned why they couldn’t target only the area where the tumour was, he replied: “You have to fry the whole brain.”

‘He immediately said: “Oh, I shouldn’t have put it like that.” But I was horrified.’

The prospect of radiotherapy would be horrifying for any parent. Among the numerous side-effects are limb weakness, poor balance and uncontrollable shaking.

Mrs Roberts began frantically researching options for treatment and says she discovered that not all hospitals automatically give follow-up radiotherapy to patients who have had brain tumours removed.

‘Giving radiation therapy is the standard protocol following the removal of a brain tumour,’ says Mrs Roberts.

‘But the scan had shown Neon to be cancer-free and his cerebral spinal fluid was clear, which was another strong indicator that the cancer was gone.
'The way it's been presented, you would think Neon is desperately sick. But he is running around, really bouncy, it's incredible.'

‘I felt we should consider the options before we ploughed ahead with radiotherapy.

‘I didn’t feel Neon was being treated as an individual, but that the medical advice I was getting was based on a blanket policy.

‘I wanted to monitor Neon, and if there was any sign that the cancer had come back then, of course, there would be no option but to go ahead with the radiotherapy.’

Over the next two weeks, Mrs Roberts and her son’s doctors argued over his treatment. The boy’s father was sympathetic to her concerns, but on balance felt that radiotherapy was the best way to proceed.

By last week, Mrs Roberts was in a state of near panic and could not bring herself to take Neon to two scheduled hospital appointments.

In response, two NHS trusts sought an emergency order last Saturday to compel Mrs Roberts to allow Neon to undergo treatment.

Already stressed and fearful, the High Court action planted another terrifying thought in Mrs Roberts’ mind — that the authorities were going to try to take Neon away from her.

‘They wanted to take him away so they could give him the radiotherapy. I was convinced the police were going to knock on my door looking for Neon and I wasn’t going to let that happen,’ she says.

On Sunday night, Mrs Roberts packed a small bag and she and Neon left home. While he has been recovering from his treatment, Elektra has been staying with her father in London.

Mrs Roberts drove to the house of a friend in East Grinstead, who runs a centre offering a form of oxygen therapy for people who have suffered brain injuries.

‘It made sense to do something that would help Neon — oxygen therapy has been shown to help the brain heal. It’s not quackery,’ she says.

She had not told anyone where she had taken Neon — not even his father.
On Tuesday, Mrs Roberts failed to turn up at a High Court hearing set to decide Neon’s cancer treatment.

When she failed to appear at the High Court again the following day, the judge took the unusual decision of lifting reporting restrictions to improve the chances of locating the boy.

Doctors speaking at the hearing said Neon’s chances of surviving would be ‘dramatically reduced’ if he did not begin radiotherapy soon. The judge said she was ‘deeply concerned’ for the boy’s welfare.

The hunt for Neon and his mother began. By the early hours of Thursday morning — it is not known how — the police had located her at East Grinstead.

Mrs Roberts was awoken by the sound of police banging loudly on the front door, and then running upstairs and thumping on her bedroom door.

‘There were about four officers outside, shining a torch in my face. Neon was asleep, but I had to wake him and leave,’ she says.

Mrs Roberts and Neon were taken to a local hospital, where he was examined by doctors.

‘They had no idea what was going on, they were saying: “What’s wrong with him? He seems fine.” A few hours later he was discharged.’

But Mrs Roberts was not permitted to remain with her son. She was stunned to be told he was being placed in foster care. She watched powerless as two social workers, a woman and a man, left the hospital with her son.

‘The last words he said to me were: “Am I ever going to see you again, Mummy?”

‘Having him taken away was like losing my arm. I’d rather have lost a limb than go through that.

‘After everything Neon has been through, was it really necessary to put him through that as well?

‘The police wouldn’t tell me where he was being taken. The way they did all this was unbelievable. I was allowed to return to my friend’s house in East Grinstead and got straight on the phone to Ben.’

After hours of frantic calls, Mr Roberts was informed that afternoon that Neon was going to be returned to him at his home in Knightsbridge, central London.

‘Neon got back to Ben’s house at 9pm, which is far too late for a seven-year-old,’ says Mrs Roberts.

‘You have to ask whether they really have his welfare at heart. I had a short chat with him. He was OK, thankfully. But he should have been back home with his mother.’

'After everything Neon has been through, was it really necessary to put him through that as well?'

It wasn’t just Mrs Roberts who was subjected to heavy-handed police tactics.

She had spent a few days staying with a friend, Kevin Wright, whose son was treated successfully for the same type of brain tumour as Neon several years ago. His house was raided in the hunt for the missing boy.

Naturally, I was keen to get advice from Kevin, because he also refused radiotherapy for his son and the boy has recovered.

‘The police found out I’d gone to stay with him. Fifteen armed officers turned up and searched his house as a police helicopter circled overhead. That is ridiculous.’

Yesterday, Mrs Roberts spent the day at the High Court, determined, as Neon’s mother, to research all treatment options for him before making a final decision about radiotherapy.

Explaining why she went on the run, she told the court: ‘I was forced into that situation. That was the very worst thing I could possibly have done.

‘I was given no choice. I thought if I brought him to the hospital they would not let me take him home, but would proceed with the treatment.

‘I feel that if you go ahead with the radiotherapy, we are depriving him of his talents. He is more likely to be infertile — no grandchildren.’

Afterwards, she said: ‘I’m exhausted — it’s a rollercoaster, but it went as well as it could and I am hoping for the best.

‘I can’t wait to see Neon — he is everything to me. He and Elektra are my world. I want to be able to say to them that I’ve done everything in my power to do the right thing for Neon.’

crackers and cheese

Regardless of her looking up information herself and looking at all the options available,she is not a doctor...major problem in the last few years is
people seeking alternative therapies online and researching illnesses themselves...while I would have no problem doing this for myself if I had a child I certainly would not risk their life based on my own beliefs and conclusions.
Extremely sensitive issue but I believe that any parent would do whatever possible to safe their child. This woman called her child Neon.....says a lot

syklops

Dean09 wrote: »

The people who suggest "cures" like that should be arrested. Like that guy on YouTube who says he can cure cancer with bananas! That guy should be locked up.

You were the second poster on this thread and you said:

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Whats the difference between some guy on youtube offering 'cures' and some guy on boards offering his 'advice'?

My cousin had very intense chemo at age two. It almost killed him but the cancer would certainly have done so if left untreated. He's now 14 and doing fine - by and large he's living a normal life.

El Guapo!

syklops wrote: »

You were the second poster on this thread and you said:



Whats the difference between some guy on youtube offering 'cures' and some guy on boards offering his 'advice'?

The difference is I didn't offer anyone advice. I said what I'd do if I was diagnosed with it.
I didn't offer any "cures" like the ones I referenced on YouTube.
In fact, if you chose to just look two posts below the one you quoted you would see that I said I'd look for other medical treatments. Not hippy stuff or anything like that. There's nothing wrong with getting second opinions or looking around for alternative and possibly more suitable treatments. In fact, you'd be a fool not to.

Chuck Stone

TheFisherKing wrote: »

‘The police found out I’d gone to stay with him. Fifteen armed officers turned up and searched his house as a police helicopter circled overhead. That is ridiculous.’

Really?

Seaneh

Dean09 wrote: »

Slightly off topic but has anyone seen the documentary "Burzynski"? Really interesting documentary. It may be s bit one sided but its well worth a watch. http://m.imdb.com/title/tt1632703/

"Henry Friedman, a neuro-oncologist at the Duke University Medical Center, was one of the independent doctors who reviewed (Burzynski's) data..."Despite thousands of patients treated with the antineoplastons, no one has yet shown in a convincing fashion, [through] the rigorous requirements for peer review, that the therapy works," he says, adding later, "You have to understand how incredible that is. Because normally, you can do a cancer study of as few as 30 [or] 40 patients...and begin to get an idea of whether there is activity or not. And then you can do larger studies, and you can really prove the merits or the lack of merit of the therapeutic strategy."...

Moreover, he says, Burzynski "has been making a fortune...on patients he's treated with antineoplastons. I find that of questionable ethics."



Basically, despite thousands of people being treated with his method, there is still no statistical evidence that it has any benefit...

All the while, he is making a fortune...

Dingle_berry

Seaneh wrote: »

It really depends on what form of cancer you have, what stage it is at, and a few other factors as to whether or not it will save you or just give you a little longer.

So do you blindly trust the course of treatment discussed by a group of strangers in a meeting that you're not included in? Hoping that these people are the best in their field and will make the best choice for you? I've been to MDTs, they can discuss everything from your diet to your attitude/spirit/motivation. Not every decision is based solely on radiological or pathological data.

Seaneh wrote: »

I know if I had stage 2 testicular cancer I'd be getting Chemo, radiationtherapy and Laparoscopic surgery to remove any affected lymph nodes ASAP.

You wouldn't look into immunological therapies first? You wouldn't research the different chemo cocktails or regimens used? You would just sign away to whatever they suggest?
Look at the difference herceptin has made in the treatment of HER2 positive breast cancers. Herceptin wasn't always available, even when licensed.
I heard of a trial for hodgkins where one of the chemo drugs would be left out (because of its close association with lung cancer later on) and substituted with monitoring by PET scans. The trial was pulled due to lack of funding but if it were my lymphoma I'd go for the PET scans instead of lung cancer.

El Guapo!

Seaneh wrote: »

"Henry Friedman, a neuro-oncologist at the Duke University Medical Center, was one of the independent doctors who reviewed (Burzynski's) data..."Despite thousands of patients treated with the antineoplastons, no one has yet shown in a convincing fashion, [through] the rigorous requirements for peer review, that the therapy works," he says, adding later, "You have to understand how incredible that is. Because normally, you can do a cancer study of as few as 30 [or] 40 patients...and begin to get an idea of whether there is activity or not. And then you can do larger studies, and you can really prove the merits or the lack of merit of the therapeutic strategy."...

Moreover, he says, Burzynski "has been making a fortune...on patients he's treated with antineoplastons. I find that of questionable ethics."



Basically, despite thousands of people being treated with his method, there is still no statistical evidence that it has any benefit...

All the while, he is making a fortune...

Like I said, the documentary is one sided. But it does make for interesting viewing.

Dude111

Dean09 wrote:

Chemo is basically poison.

Indeed and it destroys your immune system!!!!

She is trying to help her son (Which was found the other day i read)


God bless him!!

MUSEIST

Dean09 wrote: »

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Everything is a poison, literally everything. It's the dose thats important. Chemotherapy is highly cytotoxic so it has many side effects but in reality it's extremely effective for certain types of cancer. Do you refuse all medical help like antibiotics and pain medication which are also poisons?

Scruffles

professore wrote: »

Depending on the cancer chemo can be completely useless but the hospital will still offer it, and I am speaking from personal experience.

not sure on the situation in ireland,but over here its offered to pets to as they offered it to a beloved cat of mine;sam,unfortuately after the tests they did it was found she was to far gone and it woudnt have made much difference at that stage,plus she also had dementia and it affected her quality of life greatly.

this woman needs a smack into reality,using iq as a reason to avoid it is piss poor..all of us living here have varying levels of learning [intelectual] disability from moderate to profound, doesnt stop us from having a quality of life or stopping us doing the things we want to do,might stop us from doing the things others want us to do of course,which it sounds like the case with this woman; projecting her own wishes and definition of what a 'life' is on to the boy.

Jimoslimos

Dingle_berry wrote: »

You wouldn't look into immunological therapies first? You wouldn't research the different chemo cocktails or regimens used? You would just sign away to whatever they suggest?

It's not always an either/or choice. Some immunological therapies are designed to enhance the effects of chemo or radiotherapy by preventing various repair mechanisms that are triggered by treatment. They can also be used for targeted delivery of the chemotherapy drug or radioactive isotope.

Dingle_berry wrote: »

Look at the difference herceptin has made in the treatment of HER2 positive breast cancers. Herceptin wasn't always available, even when licensed.
I heard of a trial for hodgkins where one of the chemo drugs would be left out (because of its close association with lung cancer later on) and substituted with monitoring by PET scans. The trial was pulled due to lack of funding but if it were my lymphoma I'd go for the PET scans instead of lung cancer.

You do know Herceptin is cardiotoxic, so not completely risk free. Plus does the extra radiation dose from PET (especially PET-CT) not concern you? There's is a balance between risk and efficacy for all treatments, the best person to present and judge on those is the physician - not an (understandably) hysterical mother.

Jumboman

crackers and cheese wrote: »

Regardless of her looking up information herself and looking at all the options available,she is not a doctor...

Doctors are in the pockets of the drug companies you have to take what they say with a large grain of salt. The reason many of these alternative cancer treatments have not taken off is because there is not much money to be made off them.

I find it very strange people have so much respect for doctors people dont seem to realise how corrupt they can be.

Jimoslimos

Jumboman wrote: »

I find it very strange people have so much respect for doctors people dont seem to realise how corrupt they can be.

Dunno, maybe cos they don't engage in scaremongering and downright lies.

El Guapo!

MUSEIST wrote: »

Do you refuse all medical help like antibiotics and pain medication which are also poisons?

No of course not. I'm not the conspiracy theory/hippy type at all. I'm being taken up wrong.
I was merely highlighting the fact that chemo can be dangerous and it isn't always the "go to" treatment. Personally I wouldn't jump straight in and get chemo. I'd look for other treatments and a second and third and fourth opinion.
That's not to say that it doesn't have benefits. It clearly does. It has without a doubt saved countless lives. But maybe my judgement is a bit clouded by my personal experience having seen what chemo and radiation therapy did to a family member.

petersburg2002

I would rather have my child alive and take the risk of partial brain damage than have no child at all. Brain cancer is very aggressive. I would love to know how extensive the mother's research was. Her parents also seem to be supporting her decision.

Dingle_berry

Jimoslimos wrote: »

It's not always an either/or choice. Some immunological therapies are designed to enhance the effects of chemo or radiotherapy by preventing various repair mechanisms that are triggered by treatment. They can also be used for targeted delivery of the chemotherapy drug or radioactive isotope.

Yes, some cancers only have the one defined treatment regimen so the choice, in that case, is reduced to treat or not. But what about when it is an either/or choice? Using the immunological therapies means you can use less chemo because the effect is enhanced. Doctors are humans too. They have emotions and preferences and personal experience to bias them as well as support them.

Jimoslimos wrote: »

You do know Herceptin is cardiotoxic, so not completely risk free. Plus does the extra radiation dose from PET (especially PET-CT) not concern you? There's is a balance between risk and efficacy for all treatments, the best person to present and judge on those is the physician - not an (understandably) hysterical mother.

Yes I know herceptin isn't risk free. But look at how it has changed the stats for HER2 positive breast cancers. Yes there is extra risk with a PET scan but how does that compare with a chemo drug that's a carcinogen itself?
Physicians are trained to make these decisions and make them weekly and people survive thanks to them. I do not deny that. Thankfully the Irish system has followed others and is making use of multi disciplinary meetings to discuss therapies.
But physicians are humans. All humans are vulnerable to bias and error from time to time. I wouldn't do major work on my car or house based on one professionals opinion without reading up on it myself. My body gets the same respect.

le la rat

I had chemo when younger ( i was 10) 18 years ago. I was goosed for 8 months basically couldn't get out of bed, sick, throat infections low blood count platlets ect. Out of the 6 who had my type of cancer an osteo sar coma in femur 3 died 3 of us didn't. It was brutal but it worked for me. Its a ****ty spot but for me if it happens again (touch wood ect) I would be putting my faith in doctors and whatever course of action they deem neccessary. Gl to them whatever way they go

partyatmygaff

MUSEIST wrote: »

Everything is a poison, literally everything. It's the dose thats important. Chemotherapy is highly cytotoxic so it has many side effects but in reality it's extremely effective for certain types of cancer. Do you refuse all medical help like antibiotics and pain medication which are also poisons?

They're not the same kind of poison. Antibiotics/Painkillers are usually only poisons when they're used incorrectly. Cytotoxic drugs on the other hand are designed to be poisonous. That's key to their activity. Their objective is to kill cells and preferably (But not essentially) only the right kind of cells. It's very understandable that people would be apprehensive about ingesting poison or having someone inject them with poison.

Jumboman wrote: »

Doctors are in the pockets of the drug companies you have to take what they say with a large grain of salt.

Unlike the experts on Youtube who are always right.

While we're at it. Instead of spouting random nonsense, please explain how exactly doctors benefit from prescribing expensive medicines? Real examples please.

Somehow, just somehow, I don't think doctors working in the public healthcare system would want the HSE spending even more money than they are. The more money they spend on drugs, the less money they'll have to spend on staff and other resources.

The reason many of these alternative cancer treatments have not taken off is because there is not much money to be made off them.

I think the actual reason they haven't taken off is because they're no better than placebo and divert the patient away from treatments that have proven and substantiable efficacy.

I find it very strange people have so much respect for doctors people dont seem to realise how corrupt they can be.

And I find it very strange that you put all your trust in ridiculous and nonsensical Youtube videos with titles like "Why doctors are more dangerous than guns".

Jimoslimos

Dingle_berry wrote: »

Yes, some cancers only have the one defined treatment regimen so the choice, in that case, is reduced to treat or not. But what about when it is an either/or choice? Using the immunological therapies means you can use less chemo because the effect is enhanced.

The use of various immunological techniques, including antibodies, isn't as simple as you might like to make out. First of all is the difficulty in targeting cell surface receptors that are unique to the cancer, since many of these will also be expressed on normal non-cancerous cells. Delivery to the correct location is also a problem, as is clearance time. Don't get me wrong, immunotherapy has great potential but people shouldn't assume that it is inherently safer or more effective than current treatments. If you have any doubt look up TGN1412, a monoclonal antibody developed for the treatment of B-cell leukaemia.

Dingle_berry wrote: »

Yes I know herceptin isn't risk free. But look at how it has changed the stats for HER2 positive breast cancers. Yes there is extra risk with a PET scan but how does that compare with a chemo drug that's a carcinogen itself?

Oh I agree Herceptin has been a great success, and PET too. PET has enormous potential - not simply as a diagnostic tool but in predicting efficacy and potential toxicity issues related to the biodistribution of the treatment. There are a number of immunoPET trials ongoing with various radiolabelled antibodies, including Herceptin.

However just because one type of cancer responds well to immunotherapy doesn't mean all will, even those affecting the same tissue/organs.

Dingle_berry wrote: »

Physicians are trained to make these decisions and make them weekly and people survive thanks to them. I do not deny that. Thankfully the Irish system has followed others and is making use of multi disciplinary meetings to discuss therapies.
But physicians are humans. All humans are vulnerable to bias and error from time to time. I wouldn't do major work on my car or house based on one professionals opinion without reading up on it myself. My body gets the same respect.

As are you, and probably more biased considering the treatment will directly affect you. The doctor has the advantage of years of training, experience and professional regulations. They are often in a far better position to judge risk than yourself, since most people are incapable of that. By all means educate yourself and ask questions, which any proper doctor should answer honestly - even if they aren't answers you want to hear.

Dingle_berry

Jimoslimos wrote: »

The use of various immunological techniques, including antibodies, isn't as simple as you might like to make out. First of all is the difficulty in targeting cell surface receptors that are unique to the cancer, since many of these will also be expressed on normal non-cancerous cells. Delivery to the correct location is also a problem, as is clearance time. Don't get me wrong, immunotherapy has great potential but people shouldn't assume that it is inherently safer or more effective than current treatments. If you have any doubt look up TGN1412, a monoclonal antibody developed for the treatment of B-cell leukaemia.

all those difficulties are true. But they wouldn't be an issue for a doctor and patient discussing therapies. Any therapy available would at least be in the human testing phase. They are issues for pharmaceutical companies and is why they cost a fortune. There is a window after a new therapy has been licensed where the drug companies are trying to convince clinicians to try their new therapy. Possibly also while the clinicians beg for the therapy to be made available on drug payment schemes. By researching different therapy options I would hope to find something possibly better (improved survival, less sequelae) but the power to prescribe rests solely with the clinician, not me.

Jimoslimos wrote: »

Oh I agree Herceptin has been a great success, and PET too. PET has enormous potential - not simply as a diagnostic tool but in predicting efficacy and potential toxicity issues related to the biodistribution of the treatment. There are a number of immunoPET trials ongoing with various radiolabelled antibodies, including Herceptin.

However just because one type of cancer responds well to immunotherapy doesn't mean all will, even those affecting the same tissue/organs.

Yes - immuno therapies are very very specific. One of the reasons hospitals do a labour intensive, expensive, additional test before prescribing herceptin. It will only work if the tumour is over expressing the HER2 protein. But what do you do when the diagnostic biopsy was her2 negative but the sentinel node metastes are her2 positive? Or vice versa? Were your positive nodes even re tested?
What if a hospital in Dublin is doing a clinical trial for a new melanoma drug but your doctor in limerick doesn't get on with the guy in Dublin or assumes you'd have no interest in the trial or that the trial isn't worth it?

Jimoslimos wrote: »

As are you, and probably more biased considering the treatment will directly affect you. The doctor has the advantage of years of training, experience and professional regulations. They are often in a far better position to judge risk than yourself, since most people are incapable of that. By all means educate yourself and ask questions, which any proper doctor should answer honestly - even if they aren't answers you want to hear.

Of course I'd be biased. That's obvious. But what about the bias of the clinician? They are not computers who calculate odds based purely on stats, they are human too. Too much trust in clinicians doing what is best for the patient is not good. It allowed "dr" neary to do what he did. It allowed a man to die from melanoma that had been diagnosed but not fully excised. Look at psychiatry in Ireland!

The point I'm trying to make is that the mother in the news story is right to question the therapy offered. That resulted in her having fears that evidently weren't addressed by the clinicians. she found that not every consultant automatically irradiates their patients brains. She found someone who had survived a similar situation without the radiation. Would you really just say ok, you know what you're talking about those other doctors must be wrong to do that, give me the radio?

Jimoslimos

Dingle_berry wrote: »

all those difficulties are true. But they wouldn't be an issue for a doctor and patient discussing therapies. Any therapy available would at least be in the human testing phase. They are issues for pharmaceutical companies and is why they cost a fortune. There is a window after a new therapy has been licensed where the drug companies are trying to convince clinicians to try their new therapy. Possibly also while the clinicians beg for the therapy to be made available on drug payment schemes. By researching different therapy options I would hope to find something possibly better (improved survival, less sequelae) but the power to prescribe rests solely with the clinician, not me.

One of the advantages of our health system is that pharmaceutical companies cannot market directly to the public. For good reason too. You might believe you've found a promising new treatment but the doctor is far far better qualified to see past misleading clinical trial data.

Dingle_berry wrote: »

Yes - immuno therapies are very very specific. One of the reasons hospitals do a labour intensive, expensive, additional test before prescribing herceptin. It will only work if the tumour is over expressing the HER2 protein. But what do you do when the diagnostic biopsy was her2 negative but the sentinel node metastes are her2 positive? Or vice versa? Were your positive nodes even re tested?
What if a hospital in Dublin is doing a clinical trial for a new melanoma drug but your doctor in limerick doesn't get on with the guy in Dublin or assumes you'd have no interest in the trial or that the trial isn't worth it?

For good reason too, Herceptin isn't something you prescribe on a hunch
1) It has side effects
2) It is expensive (yep, cost does play a role, like or not)

Yes, it would be wonderful if countless biopsies could be taken but our health system is limited. Administering Herceptin to a patient with marginal benefits effectively deprives someone who might need it more.

Funny you mentioned clinical trials, since if you were enrolled it would most likely be double-blind and neither you nor your doctor would know what treatment you were receiving.

Dingle_berry wrote: »

Of course I'd be biased. That's obvious. But what about the bias of the clinician? They are not computers who calculate odds based purely on stats, they are human too. Too much trust in clinicians doing what is best for the patient is not good. It allowed "dr" neary to do what he did. It allowed a man to die from melanoma that had been diagnosed but not fully excised. Look at psychiatry in Ireland!

I'm not saying clinicians are incapable of bias, mistakes or downright misconduct - they are. However the vast majority are far better placed than you or I to make critical medical decisions. Your window of experience for a particular illness is usually a few months, whereas a consultant has several years - they've seen therapies come and go, they have the relevant data. They are ar more likely to be a better judge than someone newly diagnosed with cancer.

I'm all for patients being informed on their treatments, however the internet is not the place to obtain that information.

Dingle_berry wrote: »

The point I'm trying to make is that the mother in the news story is right to question the therapy offered. That resulted in her having fears that evidently weren't addressed by the clinicians. she found that not every consultant automatically irradiates their patients brains. She found someone who had survived a similar situation without the radiation. Would you really just say ok, you know what you're talking about those other doctors must be wrong to do that, give me the radio?

She's right to question and demand a reasonable justification for the treatment. I'd also argue she is entitled to a second opinion. She was not, however justified in her over-the-top hysterical reaction. She put her own prejudices above the safety of her child - even if she thought the opposite.

Dingle_berry

Jimoslimos wrote: »

For good reason too, Herceptin isn't something you prescribe on a hunch
1) It has side effects
2) It is expensive (yep, cost does play a role, like or not)

Yes, it would be wonderful if countless biopsies could be taken but our health system is limited. Administering Herceptin to a patient with marginal benefits effectively deprives someone who might need it more.

I wasn't advocating prescribing herceptin on a hunch. I was trying to use it to illustrate a point.

Jimoslimos wrote: »

Funny you mentioned clinical trials, since if you were enrolled it would most likely be double-blind and neither you nor your doctor would know what treatment you were receiving.

Unless its an advanced clinical trial where the therapy is known to be effective and the placebo group is cancelled or people are put in a known treatment group parallel to the blind trial. I've seen it happen.

Jimoslimos wrote: »

I'm not saying clinicians are incapable of bias, mistakes or downright misconduct - they are. However the vast majority are far better placed than you or I to make critical medical decisions. Your window of experience for a particular illness is usually a few months, whereas a consultant has several years - they've seen therapies come and go, they have the relevant data. They are ar more likely to be a better judge than someone newly diagnosed with cancer.

I'm all for patients being informed on their treatments, however the internet is not the place to obtain that information.

Yes the do have experience on their side, but that experience can impact negatively on an individual patient just as it can be positive.
How would you decide wether your clinician is one of the few not offering the best treatment or not? If you said you wanted to discuss the treatment but were instead hit with a court summons what would you do?

Jimoslimos wrote: »

She's right to question and demand a reasonable justification for the treatment. I'd also argue she is entitled to a second opinion. She was not, however justified in her over-the-top hysterical reaction. She put her own prejudices above the safety of her child - even if she thought the opposite.

Again, if you were told to present your child for treatment before a second opinion could be provided or discussed what would you do? Let it happen and investigate after? I'm all for the doctors being more pro active and intervening to save a child. But it's their job to provide fully informed consent through a discussion with the patient and/or next of Kin. They shouldn't go to the courts to have the child placed in care and treated before the patient feels fully informed. Even in cases of neo natal transfusions for children of Jehovah's witnesses second opinions are sought and presented

Kidchameleon

It should be noted that the mom is hot

Wibbs

partyatmygaff wrote: »

While we're at it. Instead of spouting random nonsense, please explain how exactly doctors benefit from prescribing expensive medicines? Real examples please.

Somehow, just somehow, I don't think doctors working in the public healthcare system would want the HSE spending even more money than they are. The more money they spend on drugs, the less money they'll have to spend on staff and other resources.

+1 More to the point pretty much every doctor out there has had someone close to them die of cancer, if there was some super sekrit cure they'd be among the first to sing it's praises.