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takeadeepbreath
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since
05-05-2015
70
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22-08-2016
10:48
that's how I feel, in limbo, it's like being a glass floor with an abyss beneath. I can never feel safe again, even in bed under the duvet I feel threatened. What you're feeling is quite normal. We're told to get on with it but it's not easy.
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08-06-2016
04:59
I can also access research online at a university and I found several papers on how L carnitine can reduce fatigue and boost mood among cancer patients. Most cancer patients are deficient in L carnitine and the research listed below all say that supplementation reduces fatigue – and improves mood. Safety, Tolerability and Symptom Outcomes Associated with l-Carnitine Supplementation in Patients with Cancer, Fatigue, and Carnitine Deficiency: A Phase I/II Study in the Journal of Pain and Symptom Management. http://www.sciencedirect.com/science/article/pii/S0885392406005549 The conclusion said “Most of the patients who received l-carnitine experienced improved fatigue, mood, and sleep.” l-carnitine supplementation for the treatment of fatigue and depressed mood in cancer patients with carnitine deficiency Ann NY Acad Sci, 1033 (2004), pp. 168–176 http://onlinelibrary.wiley.com/doi/10.1196/annals.1320.016/abstract This showed that supplementation did reduce fatigue – and also depression. Potential role of levocarnitine supplementation for the treatment of chemotherapy-induced fatigue in non-anaemic patients Br J Cancer, 86 (2002), pp. 1854–1857 http://www.nature.com/bjc/journal/v86/n12/full/6600413a.html This paper looked at whether L-carnitine improved fatigue among chemotherapy patients and concluded it did – after one week, fatigue lessened among 45 out of 50 patients . Efficacy of l-carnitine administration on fatigue, nutritional status, oxidative stress, and related quality of life in 12 advanced cancer patients undergoing anticancer therapy – This concluded that L-carnitine did reduce fatigue. http://www.sciencedirect.com/science/article/pii/S0899900705002613 I also found a systematic review (the highest standard of research) into how L acetyl carnitine can reduce nerve pain/neuropathy with acceptable safety. Acetyl-L-Carnitine in the Treatment of Peripheral Neuropathic Pain: A Systematic Review and Meta-Analysis of Randomized Controlled Trials http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0119479 I accept you can find evidence to the contrary but there is always contradictory evidence in medicine and it’s up to you to decide. However, this supplement is non-toxic and it worked for me so if you try it for a few weeks (when you should see an improvement), you haven’t got much to lose.
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08-06-2016
11:57
Bettypoppit let me know how it goes, I'm keen for as many others as poss to benefit. Gill xxx
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08-06-2016
11:57
I mentioned it when I signed up to a clinical trial at the Care Oncology Clinic in London and they said it was fine. hope that helps and let me know how it goes gill xxx
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08-06-2016
11:55
I only take one tablet a day and I feel great. I still have to watch my weight though! If you have a poor appetite sounds like you could do with an energy boost, it may pep you up! Feeling better will improve your appetite. Let me know how it goes gill xx
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08-06-2016
11:53
I mentioned this to the doctor when i signed up for a clinical trial at the Care Oncology Centre (see my post on this) and it was fine
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08-06-2016
11:48
Lexilou this trial doesn't have exacting criteria - and you can have telephone consultations so it doesn't matter if you don't live in London.
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27-05-2016
04:43
I live in Lancaster so would be good to meet up with anyone in a similar situation. I was diagnosed a year ago but could do with a chat with someone who knows what this is like.
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27-05-2016
04:39
This will get rid of your fatigue - research shows 90% of cancer patients showed an improvement after just one week. It's a food supplement called Acetyl - L- carnitine wtih alphalipoic acid and you can get it on Amazon. It boosts the energy producing part of your cells called mitochondria and also improves your cognitive function. I've been on it for weeks and it's totally banished all cancer fatigue - in fact, I have more energy than before and my mind is sharp.
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17-05-2016
04:29
You know when you're tired and your temperature control goes - you start getting hot and sweaty? There is a definite connection between tiredness and hot flushes. This will lessen your hot flushes AND improve your energy levels - it's a dietary supplment called Acetyl LCarnitine and Alpha Lipoic Acid which you can buy on Amazon. It boosts the energy producing part of every cell in your body and it is amazing. There have already been clinical trials of this with cancer sufferers and it improved energy levels in 90% after one week. With more energy, your body can control its temperature better, lessening the intensity of the flushes. It's made the difference between walking up at night and getting a good night's sleep. NB I have no financial interest in this product and just want to share this so it can help others.
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17-05-2016
04:21
Diana I agree. The key here is cutting out carbohydrates and sugar. Even slow release carbs like porridge raise the glucose level in the blood - and cancer cells feed off glucose. Read Tripping over the Truth which you can get on Amazon for a full explanation. To avoid carbs/sugar, some cancer sufferers have tried a ketogenic diet which is high protein, high fat but nil carbs. This is because cancer cells can't feed off the ketones which are the body's alternative energy supply if you do not eat glucose in the form of sugar/carbohydrates. Some patients have already tried this eg Andrew Scarborough was diagnosed with brain cancer in 2013 but, when traditional medical treatments failed to work, he put to the test Ketogenic diet’s reputed anticancer credentials. His tumours disappeared. Scientists are now looking at the DIY therapy. Article in new Scientist Feb 27 1016. Posted here (print off to read) http://davestockphoto.blogspot.co.uk/2016/02/published-work-andrew-scarborough-new.html or go to New Scientists website and register for free to read it. https://www.newscientist.com/article/2078558-ketogenic-diets-reputed-anticancer-credentials-put-to-test/ Here is Andrew’s personal blog which includes treatments/nutrition http://mybraincancerstory.blogspot.co.uk/search?updated-min=2013-01-01T00:00:00-08:00&updated-max=2014-01-01T00:00:00-08:00&max-results=1
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12-05-2016
05:03
I've joined a clinical trial at the Care Oncology Clinic in London which is recruiting now - it basically gives cancer patients a cocktail of existing medicines which together have a much stronger effect. Note existing - not some multi-million pound wonder drug which takes 10 years to develop (making fat profits) but drugs we already have eg metformin prescribed for diabetes but which also has anti-cancer properties. It's run by Prof Stebbings who's a leading oncologist based at Imperial College London. They want the NHS to offer a combination of these existing drugs to cancer patients as the new standard of care, since these drugs individually have already been shown to have anti-cancer effects but combining them it's hoped will intensify the effect. Read this and see what you think.http://www.dailymail.co.uk/health/article-3115964/Could-simple-antibiotic-help-fight-cancer-Experts-London-clinic-believe-cheap-everyday-drugs-starve-deadly-tumours.html Also check out their website - you can join yourself, you don't need to be referred by your GP. Results are promising as they have seen tumours shrink and even disappear in patients with metastatic cancer. http://www.pharmaceutical-technology.com/features/featurebetter-together-combining-therapies-to-slow-down-cancer-growth-4454747/
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12-05-2016
04:48
dobbo, you don't have to suffer years of tiredness. See my thread on cure for cancer fatigue.
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12-05-2016
04:32
2 Hugs
I want to spread the word on how to combat the dreaded cancer fatigue. I felt like **bleep** and couldn't even walk up a hill without resting every 12 paces like an 80 year old which was depressing. I knew the GP would fob me off with the usual rest/good diet advice (I was already doing all this with no obvious difference) so I reseached cancer fatigue online- good old Google. After reading several research papers, the cause seems to lie in the energy producing part of our cells, the mitochondria, which were not generating enough ATP, a chemical which supplies energy to the muscles. Radiotheraphy and chemo both damage the mitochondria and taking tamoxifen reduces the ability of the liver to generate ATP by half. (Ageing also means you can't produce enough ATP and feel lacking in energy - that's why I felt 80!). Dr Thomas Ames of the University of Berkely in California found a remedy for this when he was looking at ageing in rats. He gave them dietary supplements acetyl-L carnitive with alpha-lipoic acid which revitalised them and gave them energy. Here is the link to the studyhttp://www.berkeley.edu/news/media/releases/2002/02/19_diet.html Feeling like a knackered old rat, I tried it ( you can get it on Amazon) and the results are incredible. After 3 weeks I could had so much energy I could run up that hill. It's such a simple solution so I feel obliged to spread the word (I have no interest in this, I don't sell this supplement!) Try it and tell me how you feel after a few weeks. I've been on it for 6 weeks now and I have more energy than before I got cancer!!!
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12-05-2016
04:09
snap, I have a mammogram on 26th too and it brings it all back. I feel like I'm walking on a glass floor suspended above an abyss. I dread walking back into the breast care unit and like you I find walking the dog helps. Other people assume I'm back to normal but I never will be. It's **bleep** feeling like this and quite normal. The stress of this is un-f@@@@ing- believable.
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10-01-2016
11:03
Kate make sure you don't end up with a 21year old counsellor sent on a crash cognitive behavioural therapy course with no experience of life. Try your local cancer charity for counselling, I had hypnotherapy where I relaxed and chatted about my feelings with someone who deals with cancer patients. It did help, but the best thing is meeting other sufferers. I met a woman by chance at work who shook my hand and said snap when I told her why I'd been off work. She said she's still screwed up 3 years after treatment as it"cabbages" your brain. It was such a relief speaking to her as she understood. It's the difference between tasting pecan pie and reading about what it tastes like. We've all tasted pecan pie for real.
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09-01-2016
06:02
Kate make sure you don't end up with a 21year old counsellor sent on a crash cognitive behavioural therapy course with no experience of life. Try your local cancer charity for counselling, I had hypnotherapy where I relaxed and chatted about my feelings with someone who deals with cancer patients. It did help, but the best thing is meeting other sufferers. I met a woman by chance at work who shook my hand and said snap when I told her why I'd been off work. She said she's still screwed up 3 years after treatment as it"cabbages" your brain. It was such a relief speaking to her as she understood. It's the difference between tasting pecan pie and reading about what it tastes like. We've all tasted pecan pie for real.
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08-01-2016
10:00
1 Hug
Sorry I meant Tandy not tuna!
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08-01-2016
09:59
Tuna you're not weak, cut yourself some slack. The lymphodoema nurse I saw this week says it takes at least a year to get over it mentally. It's traumatic and the psychological strain is hidden. I want to scream too, in fact I've had tamoxifen rages where I felt murderous. I feel angry that this happened to me, bloody furious in fact but who do I complain to,? There is no outlet. You're going through hell so be kind to yourself. Losing your hair is a trauma in itself without the possibility of losing your life. The treatment leaves you worse off..I've got lymphodoema, chills, sweats and exhaustion but that's normal. I would love to wipe the smile off the face of my doctor by putting him through this sh@t.
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08-01-2016
08:14
I am just the same. I go to work and people say how well I look and i feel a fraud. I'm not well, I think about how I can't take anymore. You're strong says my sister who has never had cancer. I feel like I am walking on a glass floor with a chasm beneath. I don't feel safe. I feel so distressed I cry when I get home. I feel condemned for something I didn't do, like Josef k. I feel afraid and alone amidst family and friends because nobody can understand unless they have sat in that hospital room and been told they have cancer. No one. How can I live the rest of my life like this? I've read the research, I know there are no guarantees and the rest of my life under this shadow seems like no life. I also have large breasts with a high density and know this increases the risk of recurrence. I feel cursed. Thank God I had no idea when I was younger and assumed life would turn out fine.
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