Mrs Diana

[Oxygenlover]

I live in the UK I don’t have CLL but have a family member with this condition. We are all different but my therapist once said to me we all need lifeboats in life and for me and my family our lifeboat is using functional medicine. Through the use of prescribed natural health medicine I believe my family member has remained stable in his health. It’s all about taking control of your health wherever you can. It helps just knowing you are doing this. Metabolic health ranks the highest in my opinion for longevity of life for us all. The pandemic proved how poor most individuals metabolic health was. Research and come to your own opinions. But I would say, why wouldn’t you. It’s not a cure but if it keeps your blood in good shape and you feel you are doing something rather than watch and wait which is an NHS mantra. We need proactive medicine make people as well as they possibly can be. Hope my thoughts help.

[RosettaClapp]

You believe what you like but I think you are wrong and will be continuing to put my health in the hands of the experts in the NHS

[LeoPa in reply to RosettaClapp]

She isn't wrong and if you have facts proving that good metabolic health is not something everyone including CLL patients should strive for then I would be glad to hear them. Nowhere did she say not to trust your doctors. Come treatment time that's what we all do. But until then, do your best to stay healthy and fit. If functional medicine can help to attain that goal then cool, let's use it. No need to discount what healthy food choices and exercise regimes can do for us.

[Blue-bird_ in reply to LeoPa]

I agree. Ultimately, cancer is caused by prolonged, untreated inflammation in the body, whatever the cause. Ensuring you are giving your body everything it needs to operate as intended is always going to be beneficial to one's health. An ounce of prevention is worth a pound of cure.

I wish more people understood that natural medicine can work in tandem with pharmaceuticals. Especially when we consider that medicines only undergo scientific research if the government deem them financially profitable. Personally, I don't trust politicians with anything, least of all my wellbeing or life. Seeing a nutritionist on the NHS is pretty much impossible unless you have a diagnosed eating disorder, but really you should be given the option to see one whenever you are undergoing treatment, just in case there are dietary improvements you can make to improve the efficacy of your treatment and avoid recurrence/progression.

We should all be wary of snake oil salesmen, but we shouldn't pretend that traditional medicine is entirely flawless, either.

[Oxygenlover in reply to Blue-bird_]

Thank you I totally agree. There is a place for natural health alongside conventional medicine.

[LeoPa in reply to Blue-bird_]

"medicines only undergo scientific research if the government deem them financially profitable" - governments aren't involved. Pharma companies do the research. Other than that I agree.

[Blue-bird_ in reply to LeoPa]

In the UK, the government and pharmaceuticals are intertwined because the funding made available to universities and hospitals comes from the government. In the US and other private medical markets, it's useful to consider how many of the research decision makers are also government decision makers in some capacity, whether they work in federal or local offices. It is all quite convoluted, but many government officials are able to work unpaid because their income comes from the companies they legislate for.

For example, only recently did the UK government sell their majority shares from a global bank, which they bought after the housing crisis in the early 2000s. The shares were bought by a private company, which many public officials also have shares in. This was a bank which provides funding and loans to countless conglomerates, so naturally the government will have an influence on those funding decisions.

The money stays in the same hands, regardless of whether its held by a goverment official or private individual on paper, and legislation is enacted to ensure their interests are protected. This practice leads to many medications only gaining FDA approval if the drug benefits government officials, and trials will be declined if the drug is unlikely to gain approval down the line.

I am not a conspiracy theorist, anyone can look into the processes for approving medications. We just don't because we trust that governments are regulated and will only act on behalf of the public, but this is far from the reality. The truth is that we only have access to medications that are financially profitable to the state. Which is why I at least look into treatments that haven't undergone clinical trials, because these trials are actually quite politcally biased, despite their scientific rationale.

[Oxygenlover in reply to LeoPa]

Thank you for the back up support. I’m not writing this for any other reason just to help people going through dark times to find their little lifeboat and I fully believe natural health is a lifeboat. Agreed I’m not talking cure just support. I know this so my family are benefitting from my knowledge I just want others to at least consider alternatives as part of a regime.

[Oxygenlover in reply to RosettaClapp]

This is your choice. I wish you good luck and good health. I have nothing to gain from giving you my beliefs. I don’t want to upset people just educate.

[pigeonCl-HU]

Oxygenlover, you have some valid arguments. Doctors, in general, concentrate on dealing with the symptoms, rather then delving a little deeper into the cause of the symptoms.

For example, complain of acid reflux? GP prescribes a PPI, rather then talk to you for 5 minutes, giving you some pointers to improve your diet.

I wholeheartedly believe and am immensely grateful to modern medicine for saving lives. Especially in cancer cases. I also believe that there is a place to improve our health, our immunity, and especially our tolerance of the toxic cancer drugs, thru healthy living.

This healthy living? the usual mantra: check what you put in your mouth-avoid processed foods as much as you can, move more, and be grateful for the little things....

[Oxygenlover in reply to pigeonCl-HU]

Our daughter 25 years old has been in hospital with spinal issues for 2 years! Which is another story. But I wanted to tell everyone on this group that had I not insisted she take's vitamin c,db, magnesium etc she would have been in hospital with rubbish food and no nutrition . We cook meals for her and she takes regular supplements had we not done so she would be very poorly by now. Nutrition and metabolic health are rarely considered. When she gets out we will see a functional medical doctor and get her hormone levels as well as vitamin levels checked and tweaked. She then will have a course of hyperbaric oxygen in a chamber. It’s all about optimum health.

[Supersurfer1]

I only posted my first post a week ago ..it may be helpful to you and the fantastic replies I got ..We are all different and for 10 of the 14 years of my husband having CLL we " managed " the 2 years that followed were utter hell with his spleen the largest they have ever seen he was bed ridden thin and near death twice his blood count was in the hundreds of thousands how he survived I will never know we are in year 15 now..

It was so bad for me that I wanted to die first

The fear of opening the bedroom door was so great I would sit and cry outside before I went in ... and yet the inhibitors had been released to the market for use for CLL ..I respect his decisions but I remember crying and begging him to please try them..and yes you have some ups and downs but he's still here ... spleen has reduced blood count is normal ..its not perfect but he's ill he has CLL

Of course keeping your immune system strong is good and healthy eating is great but don't discount the help that can be offered for the things you cant look after

Do your research talk to several specialists

Ultimately its up to the person with the illness as I know.. .

[Mijoed]

No doubt some people gain comfort from a therapist and prescribed natural medicine and it is great to hear that you feel your family has benefited from it. However, it is really a separate and potentially broad topic that people can investigate elsewhere if they feel it may benefit them.

[CycleWonder]

I agree that staying healthy in as many ways as you can is a good rule to follow. However, some substances are available that may appear to be helping but because CLL is an odd duck as far as cancer goes, it is wise to be careful.

For example, many people swear by taking CBD for anxiety. For most people, this is fine. For people with CLL, it is harmful. It causes lymphocytes to retreat to lymph nodes and the spleen, which makes it appear that the CLL is improving, when in fact the opposite is occurring.

Fish Oil should only be ingested from eating fish, not pills.

As Aussie Neal has said many times, many natural substances that kill leukemia cells in a test tube fail to have any effect in a human body, require too much to have any positive effect without harming one or more organs, and supplements don’t always have what you think (or have something you don’t want).

So, if a CLL patient is interested in augmenting their health, it’s important to alert the medical team following the patient’s care, with what the patient is doing. I’ve been impressed with how complex our bodies are.

CLL is often not treated right away. It may be five years before treatment is recommended. Some never need treatment. But, for many of us, despite our exercising faithfully, eating a healthy diet, sleeping well, the time for treatment arrived. And then the option for treatment is welcomed as a godsend.