Watch And Wait

[annabelle63]

Has anyone had CLL for a few years without any treatments. Anne

[Kwenda]

What is your definition of a few years..?

From reading various forums for now 11 years I have read about 15 and 25 years on watch and wait..

It just depends upon your flavour of CLL which is likely to come down to the genetics and epigenetics

Dick

[annabelle63 in reply to Kwenda]

. I was diagnosed 6 months ago so I guess there is hope to go through this without any treatment

[AussieNeil Partner Administrator]

Many of us have, with about 30% never needing treatment. I was diagnosed at stage IV 7 years ago and lately keep thinking treatment must be imminent due to falling platelet counts, but keep getting reprieves. There are statistics available for the average time to treatment given various prognostic factors if you want some guidance on the likely time to treatment.

Neil

[dotty2dot]

Yes, 18 years now and still have very good quality of life.

[annabelle63]

Great news. Have you been on any vitamins special diet

[Kwenda]

It is unlikely that there is any magic pill or magic food additive or supplement, because otherwise we would most likely not be reading these pages.!

A very few people claim benefit from some herbs, but for the majority of people the IMPORTANT thing is a sensible diet and lots of EXERCISE. From all my readings the exercise has been proven to have the most benefit of all. Human beings were just not designed for sitting and over eating, we were designed for a hunter gatherer life, and thus need regular exercise. Almost impossible to have too much exercise, and if you can, I would recommend a walking or jogging routine or to join a gym group. Though I myself prefer the open fresh air unless it is the depth of winter.!!

[annabelle63 in reply to Kwenda]

I work out 5 days a week and have acupuncture and Chinese medicine which has greatly helped me. My GP told me that CLL is like arthritis comes and goes. I feel amazing . I guess being a newbee you wonder if what you're doing is the right thing, but I guess after reading your post, I'm doing what I can.. Thanks so much

[ygtgo]

Hi Anne

I'm in my 11th year and still on watch and wait.

Your health is good ... let your Consultant Watch and Wait, meanwhile you and your GP can keep an eye on your general health.

Best of all keep that positive attitude ...' I'm doing what I can '.

ygtgo

[cllady01 Former Volunteer]

Annabelle,

In my 16th year on watch and wait.

Your general health and well-being are what you are in charge of.

If you are interested in knowing what your particular CLL profile is, please ask your Oncologist to give you copies of the initial work up done to establish the diagnosis.

There is a lot of information you can find out on the internet if you have the numbers and terms from your profile.

Glad to know you are doing well. May you continue to do so.

[Carpenters52]

Hello there, welk i am 52 & was on Watch & wait

For 22 months before treatment!

Still felt great before treatnent!

But Red blood work wasn't good, so time to treat.....

Just Completed my first round of Chemo 2 days, on the Flair clinical trial Rituximab & inbrutinib instead of FCR today, pleased to report no side effects yet, feel great!

Its Early Days,of course,

But i found that after a while you understand your blood work, you get to know which way its going, and that prepares and makes things easier, keep up the exercise!

All the best to you!

[sun_flower]

Hello annabelle63 apparently I have had CLL for 10 years but only diagnosed in 2014,no treatment and quite well apart from the usual viris,s and fatigue,I was given the usual jabs too recommended by the oncologist ,I have six monthly blood tests.I take a green tea supplement and multi vit each day,I play bowls 3/4 times a week and love my gardening plus I often have my 2 small grandchildren stay over at weekends[but they

do exhaust me],I eat lots of fruit,salad and veg,I try and that's all we can do,goodluck and take care Maggie

[TheFlyer]

Hi Annabelle63 - 6 years and counting and I am Cycling one end of the Uk to the tip of Scotland a week on Saturday the 25th for charity and no treatment.

Jules the flyer

[Loves2walk]

My husband is newly diagnosed and we are so encouraged reading all these posts!

Thank you all for sharing.

[Elizabetha]

Hi Annabelle, Diagnosed 3 1/2 yearsago and no treatment so far. Like many others I have been advised to exercise and eat healthily. Most importantly advised to enjoy my life and not waste it worrying about "what the future holds" (easier said than done !)

[peas50]

Hi Annabelle...I'm 47 - diagnosed two years ago with combination CLL/SLL. I think it is as much a private, emotional and psychological challenge, as it is a physical struggle - hence the importance this site! So far, I've had no treatment. I love my job (teacher) and my outdoor, busy lifestyle. However, I just can't seem to keep up with things quite as well lately. When I 'over-do' life (too busy at work and walking 5 klms instead of 3 klms on my treadmill), I crash with flu-type symptoms. Then I have no option but to rest at least for a day...at which point I morph into Eeyore himself, trying not to succumb to the anguish and dark imaginings that the leukaemia is on a rampage. So, I'm in the process of learning how to 'rest' graciously. Best advice from my doc: 'There are those who operate at 110% - they are the Olympic athletes of this world. Then there's the rest of us who can't do 110%. You're one of us. Aim for 90% all of the time and you'll be fine."

Hope this info helps.

Wishing you all the best,

Jules from Oz x

[annabelle63 in reply to peas50]

Thanks I needed that!

[Michaeljohn50]

Hi Annabelle,

diagnosed in 2002 and still on W&W, I exercise almost every day and try to maintain a healthy diet. Above all I enjoy life; we have travelled to many amazing places and done many of the things that we want to and can do.But there is more to come. It sounds trite but help yourself by keeping physically fit and maintain a positive attitude. Best wishes

Michael

[frenchman in reply to Michaeljohn50]

hi annabelle,

i was diagnosed in 1996. still on w& w. feeling okay. do a lot of walking and gardening. take green tea and curcumine.

I hope you will be doing okay, stay fit.

[ava1967ir]

Hi Annabelle

I'm 49 ،diagnosed four years ago and still on W&W....

[Donegal]

Hi annabelle. I was diagnosed about 20 years ago and didn't need treatment until 5 years ago. Hope you get as long!!

[kathyg]

Hi annabelle. I was diagnosed in 2007 and I am still w&w. I walk my dogs and keep active.

[403Greenfield]

I have CLL, and went without treatment for 5 years. I was fine, or so I thought. When I started having swollen glands about 2 years ago, we decided to go ahead and treat with chemo. I'm not going to tell you that chemo was a walk in the park, I almost died from what my dr called the perfect storm. My immune system crashed, and I stopped breathing. I'm better now. In fact I'm more that better, I'm great. I didn't know how badly I felt until after the chemo stopped. I have more energy than ever. I'm all for watch and wait, but when it's needed. Do it. Best decision of my life.

[annabelle63]

So glad to hear you're better!!

[sallylou]

Yes, I was diagnosed 3 years ago and so far no treatment.

[Hidden]

Hi Annabelle

Likewise 6 months on w & w. Still optimistic can delay treatment much longer. Joffre

[Florence123]

Yes in my 13th year on W & W

[annabelle63 in reply to Florence123]

Great news ! Thanks Glorence

[annabelle63 in reply to Florence123]

Oops sorry Florence for the name mistake