12th Anniversary at Untreated

[DirkTengg]

Just started my 13th year as "untreated" and am healthier and feel better now than I did then. I hope this encourages at least a few of you

[Foggymind]

That's excellent news and will give folk a nice boost. It's always encouraging to hear when folk are beating the odds as it were and proving that watch and wait can go on for a very long time.

Take care and may your good health continue.

Kevin - Essex, UK

[DirkTengg in reply to Foggymind]

Thanks for your kind words.

[jazzy-annie]

That's just wonderful. Did you make changes to help you feel healthier and better? Any tips would be appreciated. I've been in w &aw for a year and a half now with wbc currently at 128,000 and feeling great so far. I imagine you are one of the slow growing indolent types with low wbc, but maybe I'm wrong? :))

[DirkTengg in reply to jazzy-annie]

PM me. Am happy to help.

[Beargrove75 in reply to DirkTengg]

I was diagnosed over 4 years ago but figured I had CLL for about 5 years before that due to severe reaction to insect bites. Please share, if you can, DirkTengg, any secrets you may have discovered!! Please?

[UK-Sparky]

Good news Dirktengg! I am only 6 years untreated and only made aware last Feb! Also feel good if only prone to slow clotting of wounds. Trying green tea and Tumeric at the moment. will see if it impacts on bloods in April. Also kick started me on diet, lost 24 kg so far in 5 months, slow and steady!

keep well all

Marc

[Kathp in reply to UK-Sparky]

HibSparky1086 - interested to hear you are taking turmeric - I have just started on this. Have you noticed any benefits so far? I too am on green tea but very occasional cups! Was diagnosed Oct 2016 W&W - as you say next blood results will be interesting for - my next apt is in June.

Best wishes

Kath

[UK-Sparky in reply to Kathp]

As you may suspect it is hard to know without blood results. Have been taking for 3 months now. One improvement is itching has stopped! I take green tea supplement as one I cant stand taste of green tea and two as I understand you need to take so much if you tried it in normal for you would have to drink a gallon a day!

Marc

[Kathp in reply to UK-Sparky]

Thanks for your super speedy response Marc! Am on train to work - never had a reply so quickly before lol

Glad you have noticed some benefits - and I agree re green tea. It's not really a favourite of mine so I may go down the supplement route. Good luck with your next results 😊

[UK-Sparky in reply to Kathp]

benefits of retirement! I used to get 5.50 train from Milton Keynes into London everyday so my sympathy!

[Saska-Jul31 in reply to UK-Sparky]

Good to hear of a fellow CLL er not far from me. My postcode is MK and I live in Beds just a few miles from M1 junctions 12 or 13. All the very best to you.

[UK-Sparky in reply to Saska-Jul31]

Hi saska, are you treated at MK hospital by dr Dungarwalla? He is my specialist, quite an expert in the field.

[Saska-Jul31 in reply to Saska-Jul31]

I was given my dx a year ago last April at Bedford by a haematologist who told me I was on W and W and sent me away with a book to read on CLL. I'd thought my nearest CLL specialist when needed would be at Addenbrookes so it's good to hear of a good specialist at MK.

All the best to you,

Sue

[sandybeaches in reply to Kathp]

I drink an organic jasmine flower tea - green tea with jasmine flowers as I find it more flavourful. Remember that green tea becomes bitter in flavour if the water is too hot and steeped for longer than 4 minutes. Green tea, if had before food in the morning, may help with weight loss as it stimulates your metabolic rate.

I've tried to ease into a supplement dosage that is supposed to cause apoptosis, but gave me such nausea that I stopped taking it. Hope it helps you,Kath. Just remember to get your liver enzymes checked on a regular basis.

Sandy Beaches

[Kathp in reply to sandybeaches]

Hi Sandybeaches that is really helpful - I now know where I've been going wrong - leaving the tea bag in (yikes) and using hot water, letting it cool.

I just love this forum - you are all so caring and helpful. I'd certainly be out of my depth without you all 🙃

I do like the sound of your jasmine tea too ☕️ x

[annmcgowan in reply to UK-Sparky]

Hi I take green tea supplements too. I buy them in tablet form from Holland and barratt and take 1 tablet per day as recommended. What supplement do you take and how much?

[UK-Sparky in reply to annmcgowan]

I use simply supplements, 5 x 1000 mg for five days

[annmcgowan in reply to UK-Sparky]

Thank you sparky 1086

[jchays1 in reply to UK-Sparky]

I read an article a while ago suggesting that alternating green tea and turmeric is much more effective than taking them together. Perhaps doing green tea one week - then turmeric the next week (the study suggested longer periods one before switching to the other and vice versa). I am doing two weeks on one - then two weeks on the other. I just started the supplements last month - and have not had any tests since starting.

[jchays1 in reply to jchays1]

Forgot to mention - I am seeing two nutritionists. Both of them - as well as both my doctors - have told me to stay away from processed carbohydrates, sugar, and alcohol. My one nutritionist told me the 'bad' lymphocytes do a 'happy dance' if they come into contact with sugar - it helps them to multiply. So, I am trying to keep my carbohydrate count down.

[UK-Sparky in reply to jchays1]

That's right I take green tea five days a week then two days of turmeric

Marc

[Loves2walk]

Thank you for sharing this wonderful anniversary!

When my husband was diagnosed a year ago, we thought the end was near. Thanks to people like you in this forum, we feel life just began then!

Keep up the good work!!!

[Peggy4]

Good to hear.

Peggy

[Kathp]

Great to hear good news- lol good may it continue for you! Thanks for sharing.

[Safta]

WONDERFUL post

[colincll10]

yes it realy does. did yoy do anything in particular to your self. diet. vitamins no alchohol etc would love to know

[PaulaS Volunteer]

Great news, Dirk. It would be nice to hear from other people like you, who have also gone for so many years not needing treatment.

Seeing as a third of people diagnosed with CLL never need treatment at all, there will be many who go over 12 years on "watch and wait" but such folk don't come to this site so often. They tend to come when first diagnosed, then if their disease is the "indolent" variety, they go away and live their lives almost forgetting about CLL. Which is great, but can give us rather an unbalanced view of things.

So, thanks Dirk for redressing the balance.

Wishing you well,

Paula

[Susiecarer]

Well done you. That's fantastic....my hubby has only just been diagnosed, 4 weeks to be exact. He is also suffering from Iron Deficiency Anaemia. Did you suffer with this at all and if so how long did it take for your HB levels to come back to normal. He was 85 then up to 93, last blood test remained static.

Just hoping they will allow us to go away in May to the USA for 3 weeks to celebrate his 70th.

BIG HUG

Susiecarer

[ygtgo]

I'm hoping to be taking the family out for a meal on Saturday for my 'cancerversery' as I am exactly one year behind you ... that's me just finished 11 years ... untreated as yet.

Of course, it's not me but the family who will be 'treated' on Sat ... I'm footing the bill.

Stay well

ygtgo

[jchays1]

Wonderful inspiration

[Ozziebee]

Good for you Dirk! I love positive posts! I was diagnosed 2 years ago, am feeling great and have "good" markers (mutated, 13q14)....I hope I am lucky enough to follow in your footsteps. Someone here mentioned that those with indolent CLL tend not to stay on the forum....not necessarily a bad thing...I certainly get it. But I like to read this forum because it is a wealth of information (who knows what I will need in the future)....makes my journey a tad less scary and it is so uplifting to know there is support out there when needed!