Introduction: Hi, I’ve just been diagnosed with... - CLL Support

CLL Support

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Introduction

Trev1 profile image
28 Replies

Hi, I’ve just been diagnosed with CLL and I intend to immediately change my lifestyle and diet by reducing alcohol, loosing weight and doing more exercise. Can anyone please help me by sharing suitable juice recipes and other herbal options that may help me fight the illness?

Best Regards,

Trevor

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Trev1 profile image
Trev1
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28 Replies
cllady01 profile image
cllady01Former Volunteer

Trev1, welcome to our forum. Sorry you have a reason to join, but if you are truly interested in learning about CLL/SLL, you have come to the right place.

That you are changing your diet to one that now to be healthier, is a good thing. There is no "CLL diet" however to be recommended. It is best to eat as healthily as possible and to exercise to keep your body strong while you are in watch and wait.

Alcohol is not something you "have" to give up, but it is best to make it a habit of moderation. When you/if you are in treatment, depending on the specific treatment, alcohol consumption may be something you need to stop entirely.

The best thing you can do for your health is to eat of the food groups and begin to think of fitness as your lifestyle. Enjoy your life and know that you may have a long time until treatment for CLL.

You will need to keep your vaccinations up-to-date, as CLL has an auto-immune factor and that can precipitate infections and viruses.

Here's hoping your begin Health and Fitness as your focus rather than try to take on any diet of any brand that calls for anything other than what the DASH diet proposes.

Trev1 profile image
Trev1 in reply tocllady01

Thank you. I’m confused as I was informed outside the group to consider vegetable juice recipes and finally what is a Dash diet, can not say I’ve ever heard of same?

cajunjeff profile image
cajunjeff in reply toTrev1

Trev, the DASH diet is a reduced sodium diet primarily recommended for people with hypertension. I have never heard it recommended for Cll, but it could be a good plan. Any healthy diet is good. Personally I just think that means eating sensibly and in moderation. For me that’s more vegetables and less junk food, but I don’t eliminate any food group.

On any cancer forum, this one included, there will be many conversations about natural remedies and herbal treatment for cancer. I am not aware of any proven herb or supplement or diet that actually reduces or cures our Cll.

Fortunately we do have a number of very good scientifically proven treatment options when the time comes to treat.

Trev1 profile image
Trev1 in reply tocajunjeff

Jeff, thank you. Obviously I need to read up as much as possible and educate myself better on this topic of interest on both alternative and conventional medication etc. It’s certainly reassuring to know there are scientifically proven treatments. My fingers are crossed that my local NHS will supply same when required.

PaulaS profile image
PaulaSVolunteer

Hi Trev,

Welcome to the group.

I can’t help you with juice recipes, but as you’re wanting to be pro-active in dealing with this illness, you might like to read the following article – “29 Things we can Do to help our journey with CLL".

It’s a collection of points that have been made on this forum over several years, so is very much a joint effort from everyone here.

healthunlocked.com/cllsuppo...

These are not complicated medical things – they are relatively simple things that we can do ourselves. Not everything will be relevant to you, as we’re all very different, but I hope you'll find some useful points there.

Wishing you all the best for your CLL journey,

Paula (in Yorkshire, UK).

cajunjeff profile image
cajunjeff in reply toPaulaS

Paula I have never seen that, thanks for posting the link. I am a big fan of common sense advice. Everything in that article sounds sensible and rings true.

PaulaS profile image
PaulaSVolunteer in reply tocajunjeff

Thanks Jeff :-)

Trev1 profile image
Trev1 in reply toPaulaS

PaulaS, thank you (River Humber UK)

PaulaS profile image
PaulaSVolunteer in reply toTrev1

Looks like you're not too far away from me, Trev! :-) I'm actually in Sheffield, edge of Peak District.

DMary profile image
DMary

Hi and welcome Trevor.

The nutritionist as the cancer center where I receive care suggested The Cancer Fighting Cookbook by Rebecca Katz if you're looking for general, healthy recipes that supply good nutrition. Should be available in your local library as it's pretty popular.

The move to get in shape and take good care ourselves is a pretty common early response to diagnosis. Hanging onto the goal is harder... But we're here to support each other.

Trev1 profile image
Trev1 in reply toDMary

Smart, thank you

lankisterguy profile image
lankisterguyVolunteer

Hi Trev1,

-

If you look on this page for a box labeled "Pinned Posts" you will find several that may be helpful.

-

Pinned Posts

12 TIPS to get more out of the forum - and help others do the same

Good article on navigating complementary cancer treatments

THINGS WE CAN DO to improve our CLL journey (an update of "Coping Strategies")

Please ask your friends and family to give blood this holiday season

When will I need treatment? Is Watch and Wait still the best option with newer treatments?

-

The second article on the list is very useful:

healthunlocked.com/cllsuppo...

Please read all the replies, especially those by AussieNeil.

-

Also please read: oicc.ca/en/blog/post/103

-

Len

Trev1 profile image
Trev1 in reply tolankisterguy

Len, thank you

Lauriesue4 profile image
Lauriesue4

Get the book N of 1 by Glenn Sabin, it will open your eyes to many alternatives and preventative type modalities. There is always hope and things you can do! Blessings

Trev1 profile image
Trev1 in reply toLauriesue4

Thank you

Oleboyredw-uk profile image
Oleboyredw-uk

Hi Trevor,

Welcome to our little corner of the interweb and to our community.

You say you have just been diagnosed so I suggest you take it steadily and try not to worry too much (we all have been there and know it is difficult). Personally, I think rushing into making many changes is probably not the best approach, however gradually make improvements and look for the benefits. All things in moderation would be my view, you need to be happy and not add unnecessary stress, life needs to go on

There is a lot to take on but be careful of Dr. Google, there are a lot of far out and even bad ideas out there, many supposedly ‘certainties’ but not checked.

Neil, Paula and others have already given some excellent pointers. The key thing, in my opinion, is to work to keep yourself in good shape (not athlete type good shape) which is a combination of eating sensibly and some exercise. This will all help in the long run.

The community has a wealth of experience, over 10,000 members, some with twenty years (plus) first hand experience. Welcome and ask questions.

Please consider adding a bit more into your profile, if you are concerned about privacy just your country would be good. We can give guidance if need be. You will discover that the protocols used and drugs on offer will vary from country to country so when responding with our experience it is valuable to see where someone is, as it may affect the answer.

best to all, rob

Trev1 profile image
Trev1 in reply toOleboyredw-uk

Hi Rob, thank you for the welcome. I've already uploaded my profile including UK country, I also ticked the boxes private, is that why you can not see my profile? No drama I will untick the private boxes if it gives my profile a better visibility?

Oleboyredw-uk profile image
Oleboyredw-uk in reply toTrev1

Hi Trevor, part of that might be because I use the HU app rather than web browser. I’ll check later once home from desktop browser. I’ll check my profile rather than you waste time. Check here for update.

BTW, the CLLSA run a number of meetings a year around the country. Check for one near you and drop in if interested. Typically 20-40 members, nice relaxed atmosphere and good expert speakers.

rob

***Update*** In profile there is a field titled something like ‘About Me’. Putting a short intro in there would be cool. The default is something like ‘Hi, I am xxxxx’. Pretty useless, but we all start there. Maybe just put country in there (you can always add more later if you feel inclined).

eric72 profile image
eric72

Hi Trev1, Welcome to the site. I was diagnosed almost 12 years ago and was on W&W for 10 of those years before starting treatment. After 6 months of Chemo I'm officially in remission. The people on this site have helped me through those 12 years with advice, and support and I cannot thank them enough. I have change my lifestyle somewhat in that time, but still like a drink, though I do eat more vegetables and fruit these days. The main thing to do is be very careful around infections and do everything to stay away from them. Have your flu and pneumonia jabs and generally just take care with your health. I wish you the very best of luck in your journey, Regards Eric.

Trev1 profile image
Trev1 in reply toeric72

Hi Eric, thank you for your input and input appreciated.

JustAGuy profile image
JustAGuy

Hi, I'm not impressed by the aggressive marketing of Glen Sabin and his book, even though I haven't read it. People who commercialize and capitalize on our disease do not attract me.

But I am in favor of healthy lifestyle. After my diagnosis 3 years ago I cut out sugar and sweets, white refined flour and rice and things made with it, caffeine (except for green tea), alcohol (except for occasional red wine). I also run and have an active life. My fatigue which I was initially experiencing has greatly reduced. I also make vegetable juices, choosing things to include or exclude strategically. For example I am currently using beets and spinach or chard in order to help with hemoglobin production. I avoid too many sweet fruits in the juices so for blood sugar considerations. I do take turmeric added to a flax seed and flax oil concoction. You can look up recommendations on turmeric and green tea on this site.

We don't expect diet to cure us but it will contribute to staying healthier and feeling better. That is relative, of course, a persons level of CLL progression.

So do your own research. Develop your plan. This helps me to feel like I am fighting back!

Trev1 profile image
Trev1 in reply toJustAGuy

That was my initial thoughts and still is to fight it rather than surrender.........

Mwagner profile image
Mwagner

Hi Trev, and welcome to a great site. You will find many knowledgeable and caring folks hear to help with YOUR journey. As a previous member posted there is no magic pill, diet, or injection that can cure us at this stage of CLL. There is little incentive for the drug companies to invest. Personally, I have been going the tumeric and green tea route. My blood counts have come down slightly but have no idea if it due to these herbs or just normal fluctuations in CLL. Take care and hope to chat with you soon.

lexie profile image
lexie

If juicing, smoothies, green tea and a high fitness level worked I would not have CLL, but for many years I did all those things and still got CLL. Now I just eat balanced, dropped the juicing for whole foods and continue activities for fitness. I agree with using the pinned posts on here for guidance.

120940 profile image
120940

Hi, yes stay way from alcohol, sugar, white flour, white rice, I used moringa tea and cbd oil, and my wbc dropped drastically that the doctor said we can stop 🛑 treatment. I am doing the plant based diet and dancing twice a week

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to120940

Make certain to have your B12 and folate monitored... supplements are sometimes not enough...

vegansociety.com/resources/...

~chris

Anastasia1 profile image
Anastasia1

Hi Trev1, I was diagnosed in Sept, 2017 and am on watch and wait and like you and many of us immediately wanted to change my diet. I am slender woman already and due to the initial surprise of my condition and change in diet I lost too much weight!

In addition to the help from the amazing people on this site, I was fortunate to live in an area that had a monthly support group sponsored by Dr Brian Koffman @ CLL Society.

You might find their website very informative @ CLLSociety.org.

Dr Koffman has some skin in the game as he is a physicians turned CLL patient.

Best wishes to you, Anastasia

marcyh profile image
marcyh

I've done something really simple since diagnosis: starting the day with a smoothie of fruit and greens. Hubby and I try to eat healthier as we get older, but I find that not doing anything too drastic helps us stay consistent. We have never had weight problems, we just try to be sensible, all things in moderation, taking meds or supplements as per doctor's orders.

marcyh

Dx 2006, observation only

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