New to the group (not at all new to CLL!). Thought I'd say hello...

Hi everybody!

I was diagnosed a few days after my 34th birthday in December 2002, although the first signs of the disease appeared some years earlier when I was thirty. I got a wart on my finger, which was unusual as I'd already had them as a child and my immune system had dealt with them back then (like measles & chicken pox, they're something you're only supposed to get once). They gradually spread and got worse and then I got all the usual lumps and night sweats - you know. I suspected that there was something seriously wrong, but I guess I buried my head in the sand - hence the delay between first symptoms and diagnosis.

I read the booklet that they gave me at diagnosis, but aside from that, I didn't really do any in-depth research. I figured that whatever was gonna happen was gonna happen, and getting into it would probably only make me worry about things that I could do little about. I made my mind up to get on with life, leave the clinical stuff to the doctors and just take things as they come.

One thing I did read about though was that although CLL was one of the most common forms of cancer in the west, in Asia, it was rare. I scratched my head about that for a while but just assumed it was down to genetics...

I went for two years before I told my consultant that I couldn't cope with work and the disease anymore at which point I was given six cycles of FCR, starting in February 2005.

As this is a public forum, I don't want to go into specifics about how I did it (you can PM me if you wanna know), but I took steps to reduce the side effects of the chemo (I didn't know very much about Rituximab or Fludarabine but I'd heard about Cyclophosphamide and I knew enough to know that it was a nasty piece of work). My 'strategy' was extremely effective and I had very little in the way of adverse effects. I had maximum response, I didn't lose any hair and I gained 20lbs (mainly as a result of spending all day, every day laying on the couch eating sugar puffs and chocolate bars!). The warts disappeared after the first cycle which was one of the most wonderful things that has ever happened to me. I had in excess of 70 of them before I went into treatment, on my hands, my face, my lips and even my neck where I shaved. They used to make me so miserable, so to see them go all at once made me so happy.

It took a while to get my life back on track after treatment. On completion of my final cycle my consultant said to me, straight out of the blue 'Jonathan, you know, it WILL come back again'. I didn't appreciate that at all. I didn't ask him the question, because like I said earlier, that's information that's of no practical use to me, and would only serve to play on my mind, which it did for a couple of years afterwards.

In 2007 an Asian guy started at my workplace, a Chinese Malaysian guy, and like most Chinese people that I've met (I married a beautiful Chinese lady a couple of years ago, so I've met quite a few inlaws now!) he was very enthusiastic about Chinese medicine. One night, out of the blue he left an article in the staff room that he'd printed off the BBC news website, and log and behold it was about CLL. It said that a clinic in the US, the Mayo Clinic, had carried out a study and found that drinking green tea combats CLL. I remembered reading about the rarity of CLL in Asia and I remember thinking that there was maybe something to it, and since then, for the past ten years I've regularly drank it. It's become quite popular in recent years and their are lots of nice flavours now so I usually make ice tea out of it. I guess I average about 1/2 a litre a day.

That's about it really. I'm 48 now and I've been in full remission for twelve years, with no sign of the disease. I still have to go and see the doctors every year, and once or twice my consultant has given me the 'it will come back line' but it doesn't faze me now. One thing about having CLL has taught me is that life is about living, not worrying about things - especially things that you have no control over.

I hope my story has been helpful to some of you. If you're new to all of this, then try not to get too worried. It's not that bad, and life does go on. Stay strong, stay positive and tell yourself every day that you're a winner!

Jonny

[Peggy4]

Hi Jonny. Thanks for the positive post. I'm sure that your optimistic attitude has gone a long way towards keeping you in remission. I think that keeping as stress free (as possible) and a having a 'glass half full' approach must be a winning combination. I strive for these although don't always manage them.

Thanks for posting and long may your remission last 😀

Peggy (watch and wait 22 months)

[Newdawn Administrator]

Hi Jonny and a very warm welcome to a CLL 'veteran' who was far too young at 34 to be diagnosed with this CLL nonsense!

You've done brilliantly thus far and your story will certainly inspire many including the much younger members. I can almost feel the relief getting rid of all those irksome warts and it's brilliant to hear of your long and durable remission.

If you wish your post to be less publicly available on the net, please restrict it to the community which makes your post and responses private to here. This is how you do that;

If you wish to lock your post, select the downward arrow at the bottom of your post and click on 'Edit'. You will see an option called 'Who can see my post'? It is currently set to 'Everyone'. Just click on the 'Only followers in my community' to lock it.

Great to hear your optimistic story and delighted to hear all is going well. I hope it continues that way for a very long time if not forever!

Best wishes,

Newdawn (dx and still on W&W 5 yrs in May)

[Hidden in reply to Newdawn]

Ah!

Thanks Newdawn. That's definitely made things less cluttered too..

What does that colour mean on my smiley face. I've noticed that some are different.

[Newdawn Administrator in reply to Hidden]

I'm not sure the colour has any significance Jonny. The different coloured faces seem random and are there until you set your own avatar by going into your profile.

Regards,

Newdawn

[lukejensen27]

Great post Jonny I too was DX at 34 and am now in a clinical trial with the new targeted drugs. I love your attitude and there is something to say about your mindset and being in remission for over 10 years. Having a positive mindset is more than half the battle in CLL. Thanks for reaching out and giving us all the good news!

[Hidden]

Hey Johnny-Thanks for your positive note. Wishing continued good health and spirit.

[ballyhoo]

Love your story, worry and stress don't help, but if you can minimize them Thats a big plus. Great Results ON FCR.

Best Wishes

[CLLCalifornia-USA]

Congratulations and welcome. I love your positive energy and outlook. It is what it is, so just enjoy every day. Kind regards, Sally (USA)

[annabelle63]

Thanks so much for that story! Glad you're better

[pkpayne]

Your story is inspiring! Thanks for sharing it.

[ladyprescott]

Jonathan; I was mesmerized reading your letter. You are so positive in your thinking and I really like that you are taking life a day at a time and not letting this funky disease get the best of you. Congrats on that! I have heard of the green tea regime and do drink it, but not as much as you. Will begin doing that. Can't hurt. Thanks for uplifting my day. Carole

[Corin850]

We are winners Jonny!!!

[bwcw]

Thank you for the encouragement. I'm close to treatment and fear has taken over along with nausea and hard to eat. Would like to know how to deal with the nausea if anyone has any thoughts on it.

[Cllcanada Top Poster CURE Hero in reply to bwcw]

Ask you specialist for a nausia med, ondansetron is common. The trick with all antinausea anti-emetics meds is anticipation, you want to stay ahead of the nausea, once it comes on it is harder to control...

If the nausea is mild, try an OTC car sickness pill, Gravol, is a common brand... they can work very well.

You may want to talk about your fear to your doctor as well or an oncology social worker or religious leader...

Above all, the fear of treatment is far worse than the actual event... believe me ...I'm doing my 5th line treatment..

~chris

[bwcw]

You are absolutely right--the fear of treatment is far worse than the actual event. Thank you for your help.