i am new here / my name is ben

[sidney-1934-7-25-b]

what can i do to contain cll

[Jacksc06]

Hello Ben, welcome to the family. I cannot answer your question. but wanted to say hello & you are not alone. Best advice i can give you is ask your medical team, seek advice here, eat sensibly, exercise where possible & try to stay positive. Best regards

[lankisterguy Volunteer]

Hi Ben / sidney-1934-7-25-b

We have lots of resources and knowledgeable people here, but in order to answer your question we prefer to know much more about you and the specifics of what you are asking.

I would suggest you read some of the "Pinned Posts" - especially

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo....

healthunlocked.com/cllsuppo...

Then ask again and we can try to help.

Len

[closh]

Hi Ben. The simple recipe is that you need to eat well (normal healthy diet - plenty of fruit and veg), exercise, get enough sleep and keep a positive mental outlook. Your CLL will probably still progress but your body will be in the best shape to cope with that and when it's time for treatment, it will go much easier. There's no special diet or supplement that's going to contain your CLL, although some people never need treatment (that said, some don't need treatment because they get it at an old age and die of something else first).

The good news is that it's usually years until a person needs treatment and the new treatments available are very good and lots of people have no serious side effects.

It is essential to see a CLL specialist (not just a haematologist or oncologist) before you get treatment, as there's lots of new developments with CLL. I also suggest that people avoid CT scans unless there's a really good reason, as they're not usually needed unless you have some unusual symptoms. Drs seem to like to order scans just to check, and they do give you a fair dose or radiation.

You've done the right thing by joining this forum - there's a lot of information and you can keep right up to date very easily. This gave me the knowledge and confidence to question my first haematologist and avoid treatment that was likely to be ineffective and damaging. My current specialist knows his stuff though (and chuckles about what a pain us patients on the forum must be to other Drs).

We all worry a lot about CLL and whether our life is over when we get the bad news. Realistically, it isn't good news but it isn't terrible. You can expect to live a long and fairly healthy life with CLL so long as you look after yourself. I'm in treatment on a combination of 2 of the newer drugs (Ibrutinib and Venetoclax) and feel fine. I just have to remember to pop my pills in the morning and then the only notable change to my lifestyle is that I'll get a hangover after 3 wines, rather than 6

Graham

[olyocl in reply to closh]

Hi Graham,

I liked your remark (what a pain us patients on the forum must be to other Drs.)

One day I was talking to my consultant and specialist nurse and I was asking them some questions that I had seen on this site he looked puzzled that I knew to ask these questions and the nurse says ' she is on a forum and that is how she knows'. I certainly felt he thought I was a pain and also felt he was impressed. Well done to this site for all the amazing information we receive. Olive

[Psmithuk]

Hi Ben

Welcome to this very helpful site. Can I suggest you lock your post (use the down arrow at the bottom of your post) as it looks like you have posted your d.o.b.

[MsLockYourPosts Passed Volunteer in reply to Psmithuk]

Arrow, then edit, scroll to the bottom and change to community only to "lock" your post. It controls you, and anyone who responds, from having the wrong people find you / responders when googling.

[pollyg2016]

Hello Sidney,

Please check out the following article, it might be very helpful.

bbc.com/news/stories-42920045

[Big_Dee]

Hi Ben, as stated before me, healthy diet and exercise. Cut the processed sugars out, exercise to prepare your body to deal with any treatments. Enjoy your life, family and follow this internet community for support.

[Hoffy]

Get the book N of 1.

I personally know some one who brought her white count down from 150,000 to 50,000 on a vegan raw food low sugar diet over 6 months . Raw is hard though .

The n of 1 guy is vegan mostly.

I am vegan.

Green tea can sometimes work.

Read all the details and work with a doctor for your ALT and AST if you take high does of green tea ECGC.

Be well,

Hoffy

[MsLockYourPosts Passed Volunteer]

N of 1 is just that - about one person. Talk to your doctor, a nutricianist, or an MD of integrative / complementary medicine if you feel the need to make big changes in your diet or supplements. Having your B vitamins and vitamin D level checked is a good idea. If you are deficient work with your doctor on dosing to get into a healthy range. Exercise - walking if other forms are difficult, and common sense changes in diet to maintain a healthy weight will do as much as anything.