UK CLL Forum, UKCLLFORUM

vitamins or supplements

Topic Made On: Sep 04, 2014 08:04am
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Hi All
Could anyone please recommend any vitamins or supplements to take for CLL? I was diagnosed 18 months ago and am on WW no symptoms currently except I don't sleep as well as I used to ( anxiety? and never wake up refreshed. Feel dreadful first thing in the morning no matter how much sleep I have . Really struggle with energy levels as mum to 3 little children . Any suggestions most appreciated
Many thanks
Suzanne Stratford upon Avon




Replied On: Sep 05, 2014 09:42am


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Hi Suzanne,
So sorry to hear you have been diagnosed with cll at such an early age.
Personally I use the natural supplement Fluradix, but I would advise consulting your consultant first,especially if you are breastfeeding any of your small children.
I think , regretfully, like myself and others here, fatigue and tiredness is something we get used to.
My advice, rather than supplements would be to have people/ family around you to help when needed.
Take regular naps when you can and make sure your Family and friends realise the difference between this "clinical tiredness"and just being tired.
I had to recently explain and educate my boss as he continued to ask me to make long car journeys as part of my job, I found a good internet article on the type of fatigue I was experiencing and gave it him to read, needless to say I am not asked to do long road trios now.
I find that most people do not fully understand the type of fatigue we feel.
I also feel a good healthy diet is a help longterm, plenty of vegetables.
I am lucky enough to have a supportive partner who often joins me for an afternoon nap, which probably benefit the both of us.
So, healthy diet, supportive friends and family and naps when you can.
Lastly. perhaps for the anxiety, the ability to have someone ti talk things through with.
Stay positive Suzanne, having a healthy and stress free mind is going to help you in the future.

I am on my second of 6 rounds of chemo, having been diagnosed last October, I don't always feel well but I do set myself up small treats after my rounds of treatment, which also helps.
Next weeks treat us a weekend away.
Hope this helps in some small way.

Kind Regards
Steve
Coventry



Replied On: Sep 05, 2014 09:19pm


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Hi Suzanne,
You have my full sympathy, a diagnosis of CLL is never good news but at such an early age as yourself and with young children must be so much harder to cope with. I am 59 and have had CLL for six years and had one six month cycle of FCR chemo three years ago. Whilst on watch and wait like yourself I tried all sorts of vitamins and supplements after researching the web for information. I too suffered with severe sleep problems and very bad fatigue (and still do to some extent). A few years back green tea was supposed to be very good for CLL and I took that each day but I can't claim it made any difference. My CLL specialist said there was no evidence green tea helped with the CLL but I continued to take it because it was partly beneficial to my arthritis. I also take multivitamins because I am over fifty. I was told by my doctor that a lack of vitamin D3 could be causing me some of my symptoms and he did some blood tests to check my levels but they were normal as were most of the other results. I would suggest you go to your doctor and get some bloods done just to see if you have anaemia or lack of any other essential vitamins or minerals. I think it is best to see your doctor rather than just start taking things you read about just to make sure that you need them and that the dosage is correct. Also more blood tests further down the line will enable the doctor to find the correct dosage for you. I hope things will improve for you.

Kind regards
Kevin - Harlow, Essex, UK



Replied On: Sep 05, 2014 09:20pm
Kevin

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Hi Suzanne,

You have my full sympathy, a diagnosis of CLL is never good news but at such an early age as yourself and with young children must be so much harder to cope with. I am 59 and have had CLL for six years and had one six month cycle of FCR chemo three years ago. Whilst on watch and wait like yourself I tried all sorts of vitamins and supplements after researching the web for information. I too suffered with severe sleep problems and very bad fatigue (and still do to some extent). A few years back green tea was supposed to be very good for CLL and I took that each day but I can't claim it made any difference. My CLL specialist said there was no evidence green tea helped with the CLL but I continued to take it because it was partly beneficial to my arthritis. I also take multivitamins because I am over fifty. I was told by my doctor that a lack of vitamin D3 could be causing me some of my symptoms and he did some blood tests to check my levels but they were normal as were most of the other results. I would suggest you go to your doctor and get some bloods done just to see if you have anaemia or lack of any other essential vitamins or minerals. I think it is best to see your doctor rather than just start taking things you read about just to make sure that you need them and that the dosage is correct. Also more blood tests further down the line will enable the doctor to find the correct dosage for you. I hope things improve for you.

Kind regards
Kevin - Harlow, Essex, UK



Replied On: Sep 05, 2014 11:59pm


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Suzanne,
I was diagnosed with asymptomatic, Watch and Wait CLL four years ago. It seems ridiculous now - but I walked out of the hospital that day like I was looking at everything for the last time, it was a beautiful blue skied day, and I was in a state of shock. For about a year I was completely and utterly convinced that I knew exactly was going to kill me, now I'm thankfully not so sure, as I'm still on Watch and Wait; my bloods are stable, and I'm feeling really healthy and fit.
Following a four month hospitalisation in 2009 [Pulmonary Embolism, Pneumonia, Surgical Tracheostomy] and my diagnosis for CLL, which was just ten months after my discharge! I totally 180'd my lifestyle, including my diet, and by god it's working!
Based solidly on my own experience, you don't need any vitamin pills/supplements, you need a proper, balanced diet that you enjoy. I've personally become a vegan in the past five years and I feel terrific. I strongly recommend that you get refined carbohydrates out of your life. Regardless of what type of dietary changes you decide to make, not consuming refined carbohydrates is half the battle won.
To digress just a bit, in 2013 I was diagnosed with an under-active thyroid with a TSH count of 14. I've now got that count down to the safe level of 4, by increasing the amount of iodine that I consume as part of my vegan diet. So for a lay person, I seriously know my onions (no pun intended) when it comes to diet.
If you do decide to go down the vegetarian/vegan path, I could advise you how to navigate down that path, in the healthiest most enjoyable way, and in all the detail that you need.
Keep well and positive.

Regards
Alan



Replied On: Sep 06, 2014 07:24am
Sarah

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Hi Alan! I was diagnosed with CLL last year, on watch and wait and asymptomatic at the time. I now show some small swollen lymph nodes in neck and groin. I am very interested in using a change of diet and other alternatives to help my body heal. Could you help me to "navigate down that path" please?

Regards
Jen



Replied On: Sep 07, 2014 06:37am
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Thanks Alan, Kevin and Steve for all you kind and supportive replies. Very informative . It's good to be part of a community who understand . I wish you all the best on your journeys and will take advice on trying to get more rest, repeat bloods and changing my diet. Thanks



Replied On: Sep 08, 2014 04:10am


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Hi Jen,
My pleasure to be your navigator, buckle-up.
Get yourself a copy of The China Study by Dr Colin Campbell. The principle premise of The China Study, is that animal protein, is effectively the adhesive for many chronic diseases/cancers. This book has changed my life.
At home I'm a vegan; however, out of necessity and a bit of pleasure, I'll go vegetarian when I'm out.
What should be avoided if you wish to walk down the vegan path with me, is unfermented soya products, which include: soya milk/yogurt/margarine. To totally nail this down use the net. In a nutshell, there is fermented and unfermented soya; unfermented soya is potentially toxic. You may recall in my previous post, that my thyroid condition has now normalised. The two most important dietary changes that I made between the two blood tests, were to stop consuming unfermented soya products, and I increased my iodine consumption, by eating more baked potatoes, and eating organic berries. Once again use the net, to find out how to naturally consume iodine through what you eat. When I was diagnosed with an underactive thyroid last year, my GP wanted to prescribe a drug for me but I said no - because I believed that I could sort the problem out by changing my diet, and in this case its worked.
As you can imagine, I'll always be grateful to my local hospital for saving my life exactly five years ago; however, it may well be partly the case, that I get my post-2009 thinking on my health and dietary issues because I experienced total vulnerability in a medical environment, which included 23 days in ICU, and two and a half months on my back...
I'll tell you what I had to eat yesterday: for breakfast, I had an orange, a glass of coconut milk [calcium], a mug of green tea and a banana. This was followed with a bowl of organic porridge [Flahavans] with flaxseeds, organic raspberries and coconut milk. For dinner: I had three baked potatoes filled with humus and sunflower margarine, broccoli, onions and tomato. My rock&roll lifestyle, I know, but it works.
One of the misconceptions about a vegan diet, is that you can't get enough protein, vitamins and minerals; you can in spades. A flaxseed contains 21% protein, and has Omegas 3,6 and 9. A chickpea contains 19% protein. There are some nuts that are in the twenties...I've actually made my diet tasty and enjoyable, as well as healthy.
There is a lot more. Feel free to ask me any specific questions that you may have, we can go back and forth as often as you need.

Best Regards
Alan



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