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dilligaf

Relay for life

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4 minutes ago, manxman1980 said:

The below posts are not discussing the disease or even alternative treatments they are putting forward a conspiracy theory that "big pharma" have a cure but won't share it.  I have every sympathy for everyone who has lost a friend or family member to cancer but I fail to see how spreading or even suggesting this nonsense helps anyone.  It's as bad as anti-vacine conspiracy theories. 

 

 

 

Quite right. 

Some very ignorant and cynical twats on here, who for whatever reason are trying to upset some very fragile people. 

I only wish I knew who they are and why they are acting like idiots

I can only assume they are people who think canabis will save them

Such a sad group really 

If they were not just idiots one might just start to feel sorry for them

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Everyone  reading this thread will have had some  experience of  cancer.

Either   first hand, or they will  have  seen it and felt  it its effects in  someone very close to them.

So, a  plea:

If you enter this   very sensitive area , please tread with care .Give others the respect you would expect for yourself and   for those  in your thoughts when you think of this disease.

Don’t be too ready to give your dogmatic  views on what should  or should not be done in the way of treating it - whether you are a  Nobel laureate oncologist or have  developed a  strong  belief in a particular remedy  or have views on  how you personally could direct   research to solve it.Resist the tempation to  denigrate and mock the views of other people , no matter how absurd and daft they may seem to you.

For society, this disease in all its variants, is not unique but is vastly complex.

For the individual , and those  close to them, it is unique, complex , very special 

-and  invariably frightening.

 

Edited by hampsterkahn
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I relayed a personal experience of cancer, isn’t this what this thread is all about? 

Just because my story differs from others does that make it any less valid? 

We’ve turned into a pretty pathetic bunch if we get offended because other people approach topics in a different way . If cancer happened to me I may take a different view than my father. He rolled the dice and won, up to now. 

Some people need to get a grip..

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12 minutes ago, Lxxx said:

I relayed a personal experience of cancer, isn’t this what this thread is all about? 

Just because my story differs from others does that make it any less valid? 

We’ve turned into a pretty pathetic bunch if we get offended because other people approach topics in a different way . If cancer happened to me I may take a different view than my father. He rolled the dice and won, up to now. 

Some people need to get a grip..

Care to explain your "ain't no money in during people" comment then?

As hampsterkahn says we will all have known at least someone who has suffered from cancer.  I lost a friend at a young age to cancer plus close members of my family.  I know I potentially carry a gene that could mean any daughter of mine would be susceptible to ovarian cancer.  Should I ever have a daughter then it's something she would need to be tested for. 

I am all for finding a cure and methods to help alleviate the suffering caused by not only the disease but also by our current treatments.  If tree hugging, CBD oil or praying to god help people then that's great but let's not pretend that any of these are more effective than the treatments developed by medical science through years of research.

Can improvements be made?  Of course, that's why we should support events like relay for life.  It's why I donate money to Cancer Research on a regular basis and it's why I have raised money for Hospice Isle of Man (even if my experience with them has been mixed).  It's not going to happen overnight though.

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10 hours ago, dilligaf said:

Quite right. 

Some very ignorant and cynical twats on here, who for whatever reason are trying to upset some very fragile people. 

I only wish I knew who they are and why they are acting like idiots

I can only assume they are people who think canabis will save them

Such a sad group really 

If they were not just idiots one might just start to feel sorry for them

I'm putting forward my personal experiences, you know watching a loved one die in front of you when there was alternatives out there.

I pray to whatever god there is no one in your family is ever effected by this and you don't have to watch them slip away and watch take there last breath and wish you'd done more.

I genuinely feel sorry for you, you sometimes come across as a ok person but most of the time you're pretty much a bell end.

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4 hours ago, manxman1980 said:

Care to explain your "ain't no money in during people" comment then?

As hampsterkahn says we will all have known at least someone who has suffered from cancer.  I lost a friend at a young age to cancer plus close members of my family.  I know I potentially carry a gene that could mean any daughter of mine would be susceptible to ovarian cancer.  Should I ever have a daughter then it's something she would need to be tested for. 

I am all for finding a cure and methods to help alleviate the suffering caused by not only the disease but also by our current treatments.  If tree hugging, CBD oil or praying to god help people then that's great but let's not pretend that any of these are more effective than the treatments developed by medical science through years of research.

Can improvements be made?  Of course, that's why we should support events like relay for life.  It's why I donate money to Cancer Research on a regular basis and it's why I have raised money for Hospice Isle of Man (even if my experience with them has been mixed).  It's not going to happen overnight though.

Great. Keep doing what you're doing if it makes you feel better. Others might choose to live and think differently. It's all part of the rich tapestry of life.  

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There’s very good reason for the restriction on selling “substances” ( whether diets, chemicals, potions, natural or man made ) and claiming cancer cure.

The justification is that snake oil salesmen prey on the weak and vulnerable and cancer patients, especially those with poor prognosis, often fall into that category.

Its no different to the laying on of hands and prayer. I had a relative who the doctors declared terminal. She and her husband went to many healing missions in a last, but futile, attempt to seek a cure. Somewhere I’ve still got the leaflets, and books of testimony, from when I cleared their house.

Terrible exploitation.

There may be something in cannabis extracts, or macrobiotic diets,  but the idea that they are going to cause mutated genes in cancerous cells to mutate back is not sustained by any research. 

There is likewise no scientically supported evidence that they will slow down cancer cell division, tumour growth or the formation of secondaries.

As alternative pain relief to morphine, or to improve quality of life, there’s plenty of evidence. But not as a cure.

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John, as you've received treatment what has been your personal experience of it all?

Would you consider looking at another therapy type, such as trying CBD etc?

Genuine questions, I know online it look like trolling, in case its coming across that way.

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1 hour ago, Knoxville said:

John, as you've received treatment what has been your personal experience of it all?

Would you consider looking at another therapy type, such as trying CBD etc?

Genuine questions, I know online it look like trolling, in case its coming across that way.

I’ve read the abstracts, research papers, academic articles. I had 3 months in hospital with time on my hands. I wanted to understand what I had, what it caused, and what the cures were.

First, what I had was fatal and untreatable 40 years ago. Diagnosis to death average was 3 weeks. Quite often diagnosis was post mortem.

Taking nothing was not an option.

Second, the cancer is caused by a very specific mutation in the bone marrow stem cells which produce red and white blood cells and platelets. Parts of chromosomes 15 and 17 get swapped. That means the blood cells they produce are affected, they never mature, they don’t carry oxygen, can’t fight infection, and the blood doesn’t clot. So you become increasingly breathless, suffer more and more infections and you bleed and bruise.

I was very ill, needed oxygen, had multiple infections, and bruises everywhere, and was bleeding from my gums, nose and suffered haemhorages in the vitreous matter in my eyes.

There are two standard treatments. Apart from transfusions, gallons of them, and massive doses of antibiotics and steroids. 

Both involve ATRA, a vitamin A complex. It has side effects of its own, nausea, headaches, skin eruptions, dry skin, all sorts. It’s not a chemo, but it’s not pleasant. 12 pills a day for 8 weeks, then two weeks on, 2 weeks off, for 6 months. ATRA binds with receptors in the Leukaemic blood cells, enabling them to mature and carry some oxygen, fight some infection and clot a bit.

Then there’s a choice between Idarubicin, a chemo drug, and Arsenic Trioxide (ATO) , which isn’t chemo, but is cytotoxic. Both work by slowing down, eventually stopping, the division of the blood producing stem cellls in the bone marrow. ATO As2O3 is the more recent and is just being introduced in UK. Ida is still used in most centres, but if you have ATO, and it doesn’t work, or you achieve remission and then relapse you can go onto Ida.

I had the ATO for an introductory 8 weeks, daily infusions. Over 2 hours. Then in 4 week cycles, week 1 was 5 doses, weeks 2, 3 and 4 was twice a week. Repeated 4 times.

Im really reducing to noddy terms here. The one mutated cell, perhaps 10 years ago, divided into 2, 4, 8, 16, 32, 64, and so one, over the years, faster than the millions of normal ones, eventually pushing out the normal ones. To the extent that at diagnosis I had 90%+ affected blood stem cells and virtually no good blood cells. There are millions of these stem cells, so for the cancerous ones to take over takes a long time.

Id experienced increasing breathlessness, repeated infections and minor bleeds and bruise, getting worse over the last 5 years. 

Diagnosis, when it came, was dramatic, couple of weeks. From ill to dying.

At that stage the risk is that you suffer a brain haemorrhage, and die.

Both treatments are highly effective, as I’ve said above, high remission and cure rates.

Side effects are unpleasant. I’ve got fatigue and muscle cramps and severe peripheral neuropathy ( constant pins and needles and numbness in my hands and feet ). I can’t feel my toes or the soles of my feet. That makes balance an issue.

Initially Nobles couldn’t deliver the Arsenic, but sent nurses for training. I had most of the final two cycles at Nobles. 

I don’t think any of the complementary therapies would have saved me.

Ive been in remission, no mutated blood cells or stem cells ( from Bone Marrow Biopsy) since December. But treatment continues continued for the full 9 months. Small samples being clear doesn’t mean there aren’t one or two rogue cells lurking, so the idea is to over treat to make sure.

Im now on three monthly bone marrow biopsies, and three weekly blood sampling, for at least three years, so if it does reappear I can be put back on treatment immediately.

The effect of the ATO is cumulative. By the end I was so poisoned that I had to miss  a week of treatment and have the last few doses at half strength.

I’ve one other side effect. I didn’t lose hair, but I’ve now got baby curls in white, something I had in my baby photos. Hair going curly after chemo is common .

Would I have tried alternatives? No. What I had was eminently treatable, and I never for one moment doubted I’d survive. If I’d had something else, with poor prognosis, I might. If the neurologist can’t sort the pins and needles then cannabis products are an option I’ll explore.

Edited by John Wright
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I think there's a little over-reaction and here. If faced with a life-threatening situation you take whatever decisions you think best to keep you alive. This thread seems to have taken on the typical mud slinging you always get on here.

It isn't an either/or scenario with regards to treatment, you opt for whatever you think is best based on research and proven efficacy. Some people would only consider 'western medicine', others would only consider 'complimentary'. Another person might take the best and proven aspects of all options and not confine their thinking to a 'one or the other' mentality. 

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That is all well and good Lxxx but say someone opts to have conventional treatments and to take alternative therapies as well.  Could they be putting themselves at further risk by not understanding how the two treatments may interact?

A drug administered by a medical professional will have been through rigorous testing and various studies to confirm its effectiveness.  They will also be strictly quality controlled at the point of manufacture. 

Could the same be said for alternative treatments?

There is a risk that people will shun professional medical advice if comments such as those I quoted in my post earlier are allowed to go unchallenged.  I will not apologise for that.

I have an issue with anti-vaccers for the same reason.  I am sure you understand the importance of "herd immunity" for people receiving treatment for cancer.

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11 hours ago, Knoxville said:

I'm putting forward my personal experiences, you know watching a loved one die in front of you when there was alternatives out there.

I pray to whatever god there is no one in your family is ever effected by this and you don't have to watch them slip away and watch take there last breath and wish you'd done more.

I genuinely feel sorry for you, you sometimes come across as a ok person but most of the time you're pretty much a bell end.

and you very ignorant. Simple as that

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5 hours ago, manxman1980 said:

That is all well and good Lxxx but say someone opts to have conventional treatments and to take alternative therapies as well.  Could they be putting themselves at further risk by not understanding how the two treatments may interact?

A drug administered by a medical professional will have been through rigorous testing and various studies to confirm its effectiveness.  They will also be strictly quality controlled at the point of manufacture. 

Could the same be said for alternative treatments?

There is a risk that people will shun professional medical advice if comments such as those I quoted in my post earlier are allowed to go unchallenged.  I will not apologise for that.

I have an issue with anti-vaccers for the same reason.  I am sure you understand the importance of "herd immunity" for people receiving treatment for cancer.

Calm down dear. Let adults be adults.

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