Introducing myself

[Skyfli]

Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My last blood test in November 2018 showed that my MBL had crossed the line, and I am now diagnosed with CLL. It's initially quite difficult psychologically to come to terms with the diagnosis, but I feel that I have. Fortunately for me at the moment the CLL is at a very low level with no symptoms, and my oncologist has advised a watch and wait approach. I already have a healthy lifestyle, I'm fairly fit and eat well. I have started taking some supplements as I figured they can't hurt. I'm a pilot and luckily my medical was approved to continue flying at this stage which makes me very happy as I love flying My next blood test is due in November 2019 and I am hoping that my blood may have improved or at least remain stable. The oncologist told me that I may not need treatment for at least 5 to 10 years, or possibly not ever. Impossible to say. The CLL is at a low level and seems to be very slow progressing, so I have my fingers crossed that I may be able to stabilise or reverse it with supplements and lifestyle. Great resource here, and I'm happy to be a part of it. Thanks.

[DriedSeaweed]

Welcome! Fingers crossed!

[PlanetaryKim]

Hi Skyfli! And welcome.

[AussieNeil Partner Founder Admin]

Welcome Skyfli!

With annual blood tests, your specialist certainly sees your CLL as stable and keeping fit should certainly help you in your CLL journey. Other useful tips to help you live well with CLL have been collated in this pinned post:

healthunlocked.com/cllsuppo...

With respect to supplements, hard evidence regarding their effectiveness compared to obtaining what our bodies need from a good diet is becoming more and more difficult to find. There's also the issue of potential interference with prescribed drugs. At least in Australia, the Therapeutic Goods Administration requires supplements to be registered and maintains a list of banned from importation natural ingredients known to be dangerous. Funding for independent monitoring is inadequate however. I'd recommend only taking supplements where you have a medical requirement not met by diet. With CLL, the supplements that appear to be most commonly useful are vitamin D3 (low vitamin D serum levels are not unusual in CLL), vitamin B12 if anaemia can't be explained by CLL related factors and magnesium if severe cramps are an issue. Work with your doctor and specialist with regard to taking supplements and keep them informed so that they can advise of potential interactions and monitor your liver and kidney function appropriately.

With regard to the supplements suggested to be active against CLL, read this post:

healthunlocked.com/cllsuppo...

Neil

[seelel]

Welcome Skyfli,

I was also diagnosed in my late 50's here in Oz and I'm still on W&W 13 years later.

Your oncologist is right that some may never need treatment. The figure is about 1/3 of patients.

Knowing the local scene, if you are using the public health system, you have probably only had a Flow Cytometery test to establish a diagnosis of CLL. But the next question is, 'What flavour of CLL?' For that you require a FISH test and an IgVH gene mutation test.

But the other question is, 'Do you want prognostic information, or would you prefer to wait and see - cross the bridge when you come to it?' Some of us like to be fully informed and others don't.

You say that you live a healthy lifestyle and are fit and eat well. That's good. But then you mention taking supplements. You are right, they probably won't hurt, but a person who 'eats well' doesn't need supplements. All our nutritional requirements are met by a healthy diet provided that we properly understand nutrition. My opinion is that supplements won't do anything to help manage your CLL, but there are many who believe to the contrary. Supplements are only of use to those whose nutritional requirements are not being met by the food they eat.

Anyway, there is a journey out ahead. It can be a pleasant one.

[Kokobean]

Welcome! I do hope everything moves at a snails pace for you.

[very]

Hi Skifli my husband was diagnosed 1999 when he was 54, he required no treatment until

2016 when he 6 rounds of chemo, he is now in remission. During the time he was on watch and wait he was very lucky and required no treatment had very few infections and carried on working. Keep flying those plains.

jenny uk

[Skyfli]

Thanks for the welcome, the feedback, and the great articles. The one positive for me is that the diagnosis really prompted me to spend time reviewing everything that I'm doing in my life, and what I want to be doing with the time I have left. I think everyone should do that, we all have limited time and the clock is always ticking! As much as possible I've identified and focused on this things I really love doing, and the people I want to be with. Also I remind myself everyday to be thankful for my health and good fortune, not sweat the small stuff, and endeavour to look always look at the bright side of every situation.