Sleep for NHL survivors: l picked up... - Non Hodgkin's Lym...

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Sleep for NHL survivors

R16728 profile image
15 Replies

l picked up this quote from the following website and thought it might merit discussion.

lymphomasurvival.com

"Sleep is so important in managing lymphoma that it gets a “pillar” of its own (shared with stress) in our 4P-GRS program. In this regard we most often mention the benefits derived from quality sleep. But like all things, the other part of the story is what happens when we don’t get enough quality sleep."

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R16728 profile image
R16728
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15 Replies
Tinkerbellcgy profile image
Tinkerbellcgy

Indeed, what happens when we don't get enough or any quality sleep? For me, I honestly cannot remember when I have had either enough sleep or a quality sleep and I know it affects how my body and mind functions. I have always been one that requires a lot of sleep and when I am deprived of it, it's not a pretty sight.

Felix_2010 profile image
Felix_2010

Sleep is something I'm struggling with. I'm in that limbo land at the moment - finished my chemo but not yet back at work, so I have days where I have little to do, and days where I have no energy to do anything anyway. My sleep pattern is up and down, especially thanks to the hot flushes most nights. On the nights I do sleep properly I feel so much better the next day, physically and mentally.

Hi everyone, please read what Lymphmation.org says about the inventor and promoter of this approach (Robert G Miller) and then come to your own conclusions about the 4P GRS programme. I can't copy the URL to the article.

R16728 profile image
R16728 in reply to

Thanks for the comment and the link. To be honest, I had no idea what 4P GRS was until I read your comment and checked into it. I was more interested in the role of sleep which intuitively feels important to my every day dealing with NHL. The issue with our man, Robert Miller, comes down to the usual argument that emerges between established medical practitioners and alternative med types. It's worth keeping in mind that causes and cures for cancer are still a wild west and many medical practices that have been thought viable in the past, are long gone and forgotten. Mr. Miller has some good material on life style and diet that are worth exploring. It's an area that is seldom touched on by the medical profession. I've also been studying Dr. Ken Crawford. Know anything?

in reply to R16728

Thanks for the info about Dr Ken Crawford. I tend to be sceptical about theories that certain diets can prevent/kill cancer. Not because I don't think that food has a part to play - I do! However, I don't trust anything that hasn't been subject to proper scientific scrutiny. I have been trained in research and will always look to the most authoritative source on any subject and therefore will never take on the advice of a book, even if it is written by a doctor. I will look at latest research papers provided by reputable sources instead and also check who is funding the research.

I agree with you that a lot isn't known about cancer but there are new developments every day that are built on previous findings. Cancer research is a methodical beast but it is now moving at a rapid rate with breakthroughs happening every week. The important thing is to keep healthy in mind and body in the meantime. You are correct that sleep must be important and it is worth exploring.

I would use texts like those produced by Robert G. Miller and Dr Crawford only as a starting point and then go onto to research their theories but never take those theories at face value. My health is too important no to do that.

R16728 profile image
R16728 in reply to

I'm with you re. research. It's very important and is my bottom line. What I like about both Miller and Crawford is they spend a lot of time following studies and reporting and synthesizing findings. They also "think outside the box" which often isn't easy for the medical establishment. Crawford is especially good with the chemistry and geographical information. He "stirs the pot" a little and I'm sure feeds ideas back into the research stream. I'm fascinated by the geographical studies that pick out the world regions with low incidence of cancer and try to explain the difference in terms of our own pathetic record. It's easy to conclude there are problems with diet, exercise and environment! The problem with these gentlemen is they both push conclusions too far without substantive proof. That's OK with me. There is no complete answer. I just like examining the thinking. As my oncologist says when I bring up issues, "It can't do any harm to look at it."

On a whole different topic: are you familiar with "immunotherapy"? We have a new lab here in Victoria that does this technique. I'm wondering if it's applicable for NHL.

1800 profile image
1800 in reply to R16728

Yes it definitely is. I have CLL/ SLL. I am on IBRUTINIB. It is a new immunotherapy drug. I go to The City of Hope. Been on it 3 months with very minor side affects and excellent progress being made in my case. First c.t. scan after 3 months 50% reduction in Lymphoma. The company that makes this is IMBRUVICA. It has been on the market 1 year.

in reply to R16728

Agree with your comment that these guys push conclusions too far without substantive proof. I also think that some of these guys do this because they know they can cash in on others vulnerability and paranoia that if they don't buy into the 'plans' and 'programmes' then they aren't doing everything they can to get themselves better.

Immunotherapy - I am currently being treated with a targeted immunotherapy drug called Rituximab (a monoclonal antibody). It is keeping me in remission and I will take it for 2 years via injection every two months.

R16728 profile image
R16728 in reply to

I was on Rituximab for a couple of my final chemos. My body didn't like it much. This "monoclonal antibody" isn't the same as having cells removed, re-engineered and replaced as "fixed". Very different I think?

cbc.ca/news/canada/british-...

The lab’s initial focus will be on Adoptive T Cell Therapy. This is a specific form of immunotherapy that amplifies the power of T cells—immune cells responsible for destroying viruses and tumors—extracted from an individual cancer patient. In a highly selective process, scientists identify the T cells already attempting to destroy the cancer and multiply them by the thousands in the lab. The end product is a supercharged batch of a patient’s own T cells that can be delivered through an IV infusion.

You're right about quacks taking advantage of desperate cancer or other patients. It's a world of unending deceptions and scams.

in reply to R16728

Yes, I've heard about T-cell therapy. It sounds promising but needs more work. I have read it plays havoc with your immune system. But I think it's something that may help us down the line.

oncloudnine profile image
oncloudnine

Four months of remission now for NHL. I take melatonin just about every night, and it really works for me. Makes me very sleepy.

Reem-ayoub profile image
Reem-ayoub

What happens after we get treatment and or transplant? Then what?? Do we go back to the old habits of mindless eating and cell destroying lifestyle? I would never opt for alternative med to replace conventional treatments but I cannot help but wonder 'what if they are right?!'. I am currently reading Never Fear Cancer Again by Dr Raymond Francis and it all makes sense. So my husband is in remission and will be getting his transplant in about 10 days. Once he is back and fully recovered should we will live with the fear of the cancer relapsing? Why not give those theories a try? Detoxification and relaxation techniques, an alkalizing diet, healthy eating habits and guided consumption of supplements sounds about right, no?

in reply to Reem-ayoub

Reem-ayoub, the very best of luck with your husband's transplant. Don't live in fear, just live. What will be, will be. I know that it is easier said than done.

I have had a recent scan which has shown me that the Rituximab I am taking is working. My treatment ends in Jan 2019, then I'm on watch and wait.

I am not going to waste my time waiting. I am planning on taking a year out to go travelling with my husband on a shoe-string - just like I did in my twenties.

Try mindfulness. It has certainly help me think differently about my life and focusses on living in the moment.

R16728 profile image
R16728 in reply to Reem-ayoub

"mindless eating and cell destroying lifestyle" So true for so many! I'm glad you're actively doing something that will give you great benefit regardless of the cancer. I'm adopting a whole new approach to diet and loving it. Only time will tell.

Reem-ayoub profile image
Reem-ayoub in reply to R16728

Please stay in touch and let me know how it goes along! I'm eager to delve into a cell-reviving lifestyle too! Best of luck!

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