Some questions from a Newbie in Limbo

[fugazi]

Diagnosed 2 weeks ago, waiting in Chromosome analysis for my sub type, just had a few questions for fellow sufferers.

1. Ive just had night sweats for the first time? I had a pretty nasty cold so maybe its to be expected. Should I call my haemotologist? He gave me the impression we needed to wait til the latest tests were in and there was no urgency...but not so sure.

2. He told me there are no real risk factors. I wonder if Stress is one. Have you guys found that to be true? I am taking measures to reduce mine.

3. Any correlation to Lyme disease. Got it 5 years ago?

Thanks guys, appreciate this forum so much.

[Peggy4]

I think ‘in limbo’ pretty much hits the mark, the waiting is so hard but you do get used to it. Have you been given a specialist nurse who you can ring for advice?

De stress your life? Fab idea!

Peggy 😀

[Oleboyredw-uk]

Hi Fugazi,

Welcome to our community. I appreciate you’d prefer no to have the need to be here, but welcome anyway.

My personal approach following discussion with my consultant is ‘if in doubt - call him’. Colds certainly can result in overnight sweats so it could be that, but better safe than sorry.

As you are new can I suggest you mention what country you are from, treatments vary significantly from country to country depending mainly on drug approvals so it helps when responding.

I think de stressing is a good idea if possible. It makes for a happier life and that can only be good. As to whether it is a CLL factor I’ll leave others to reply to.

I’ve never heard of Lyme disease being implicated although I could imagine with a weaker immune system it could be more problematic.

Sorry I can’t help more on these questions.

best, rob

[fugazi in reply to Oleboyredw-uk]

Thanks folks, I'm from Melbourne where I am told they have been quite active in drug trials for CLL.

[closh in reply to fugazi]

Hi Fugazi

It's unlikely stress caused your CLL but it certainly won't help it. Not worrying is an impossible task when we're first diagnosed. After a while you get used to not dying though and the anxiety goes away. It's time now to focus on the Big 4 basics - exercise, eat well, get enough quality sleep and keep a positive attitude. These will keep you going much better and make any treatment in the future easier to tolerate and more successful. You don't need to go overboard though - go out for dinner, drink good wine, holiday, enjoy yourself.

Everyone on this forum will tell you to make sure you see a CLL specialist (not just a haematology/oncology) specialist before you get treatment. This is essential advice. A normal haematologist is OK for general monitoring during the watch and wait phase though. Just make sure you Google and read the iwCLL Guidelines 2018 so you know what sort of testing etc is good practice (eg you don't need regular CT scans). The best CLL expert in Australia is in your home town - Dr Con Tam (St Vincents and Petermac). He runs a lot of trials and is world class.

Now for the good news - there's lots of good treatment options being developed and experts like Dr Tam can help you access them when needed. I joined one of his trials about 18 months ago (Ibrutinib + Venetoclax) and my last 2 blood and bone marrow tests have been "CLL not detected". This was from just popping a few pills each day - I had no real side effects and am active and feel fine. There were 14 of us in the first trial group. All responded well to treatment and 12 reached MRD- after 15 months. You should expect to lead a long and good life if you look after yourself.

I hope you keep us updated and keep informing yourself of developments/options. Info from these forums has definitely improved my health!

Graham

[fugazi in reply to closh]

Wow, that is good news Graham.

Congratulations on those results.

Very inspiring.

Thanks for the advice around a CLL specialist, I go for my second appointment with my haemotologist Dr He, in about 10 days. I will ask him about those trials.

Thank God for this forum and tge good folk on it.

[closh in reply to fugazi]

There's another really interesting trial in the US of a vaccine therapy INVAC-1. That's been excellent at curing mice of all sorts of cancers with a simple injection or two. Hopefully it works well on humans too - if not, they'll probably learn things to guide the next option.

As you've just been diagnosed, any trial you look at is likely to be 2-10 years away. It probably hasn't been seriously thought of yet. That's if a trial is the right option for you - one of the treatments currently in development might be out then as your best option. Either way - plenty of reasons for optimism (doesn't mean we can slack off on our good eating and exercise though

Graham

[AussieNeil Partner Administrator in reply to fugazi]

You are definitely in the right city in Australia for access to world class treatment. This pinned post provides a helpful explanation of why (watching) and waiting is nearly always the best option after diagnosis:

healthunlocked.com/cllsuppo...

You'll find a link to the iwCLL Guidelines 2018 mentioned by closh in that post too. John Seymour is the Australian representative on that international collaborative work.

With respect to your question about Lyme disease, we really don't know why we get CLL. There's a degree of inherited risk - about 10 to 15% of us have relatives that have CLL or closely related blood disorders. Agent Orange exposure is legally accepted as a risk factor and an increased risk has been found in those having high radiation exposure from the Chernobyl nuclear reactor failure, but beyond that, there really isn't any definitive evidence of causal factors, just lots of suspicions from various causes, such as some viral infections.

Neil

[fugazi in reply to AussieNeil]

Cheers Neil, really appreciate the advice and info.

Cheers John