Looking for information

[Molly2017]

I'm new and just got my genetic test results back. It looks like I'm stage 0 with WBC of 25 and platelets at 173. My ALT is 14 and lymphocytes are at 54%. The chromosome test said negative for trisomy 12 and no deletion of 11q, 13q, or 17p detected. My oncologist says I have a favorable prognosis. I'm 53 in W &W no real issues other than getting my gallbladder removed next month.

My question is does anyone else have such a favorable prognosis and how long was your W&W prior to symptoms or treatment. I know we are all different but I don't want to be unrealistic.

Thanks for listening

[Newdawn Administrator]

Hi Molly,

In the U.K. we often are not given the FISH test until treatment is imminent so even though I'm approaching 5 yrs since diagnosis, I've no idea of mine. What I would say is I'll be delighted if they mimic yours because that's a very good prognostic profile as your oncologist says so hopefully it will mean a more indolent journey through this. Possibly many many years to treatment but obviously nobody can be absolutely sure due to the uncertain nature of CLL.

At the moment just concentrate on your gall bladder operation. I've had mine removed and whilst it's not pleasant, it's absolutely fine especially if it can be done laparoscopically. It will ease lots of unpleasant gastric symptoms for you too.

Go forward with confidence. You've struck lucky in the CLL lottery!

Newdawn

[Molly2017 in reply to Newdawn]

Thank you for your reply. And you're right about being lucky. I should count my blessings and enjoy life. I guess I was just waiting for the other shoe to drop.

[Newdawn Administrator in reply to Molly2017]

I see it like this Molly;

'Life is good but good life is better' and a really good life doesn't need cancer in it.

Lucky is highly subjective but in terms of the risk bucket, you've got the good one and I'm delighted to hear it.

Warm regards,

Newdawn

[johnliston]

I'm 13q deleted (also favorable), mutated IGVH, CD38 negative, ZAP 70 negative, and have been over 15 yrs since diagnosis without treatment. In the last year I started IVIG infusions because I no longer produce enough antibodies Other than that the CLL has had little effect on my life. My WBC has been as high as 128 last year, but has since come back down to 65. I will probably need treatment in the next couple yrs. I've been lucky.

Years ago I asked Dr. Hamblin what the odds were of going ten yrs without treatment, According to the data he'd collected on his patients it was roughly 50/50. (very non formally collected)

john