End of term report!

[Steffi50]

So I just heard from the CNS that I have no evidence of CLL cells, sensitivity 0.01%. I am not good at interpreting the 0.01% thing but this sounds a good result!

[mrsjsmith]

Well done because I know you have had a rough time recently.

Colette

[Steffi50 in reply to mrsjsmith]

I know but hoping to get a decent remission now.

[mrsjsmith in reply to Steffi50]

I managed 10 years first time around 🤞 so hopefully you will do better.

Colette

[Steffi50]

I have been told 5 on V&O would be a good outcome. I think. you had chemo first time round? Sadly some are only getting 18mths but as ever I am hugely optimistic! All good wishes to you Colette xx

[mrsjsmith in reply to Steffi50]

Yes back in the dark ages I had Chlorambucil, and they said they would be disappointed if I relapsed in less than two years.

Put it to the back of your mind now and get on with your life. There have been a lot of discussions about various diets recently, but personally I think a positive attitude is the most important thing for our wellbeing.

Colette x

[cajunjeff]

Congrats Steffi on being mrd undetectable. The 0.01 thing is a measurement of just how sensitive is your mrd testing. 1% sensitivity would be finding no Cll cells in one of a hundred cells looked at, .1 % is one in and 1000 cells and .01% is looking at 1 in 10000 cells and finding no leukemia.

A test with .0001 % would be one in a million.

Even if you still have cll cells lurking below the sensitivity of the test, getting to mrd negative at 1 in 10000 cells is great news. Achieving MRD undetectable status can correlate with length of remission, meaning that people who get to mrd undetectable, on average , have longer remissions.

We also know that with fcr, a not insignificant number people who get to mrd undectable status, have not had their cll return in almost 20 yrs now. It remains to be seen how durable the mrd negative remissions we get with the new drugs will be. 20 years cll free is sure a cure in my book.

[Steffi50]

I am soooo pleased to get this explanation. Its been a journey! Thank you cajunjeff.

[Dragonfly2007]

Congratulations 🎉 it's so good to hear success stories, gives me hope 🤗

[Steffi50 in reply to Dragonfly2007]

Thx Dragonfly2007. 🤗

[prbs2707]

YEAY!!! What great news. Well done you, it's a long tough road but you have made it. I'm ahead of you and got the same news 2.5 years ago and still enjoying full remission so I'm sure it will be the same for you. My dear old dad used to say to me when I was sick as a child "the best thing about being ill is feeling well again...it makes you appreciate life so much more" How right he was, we tend to take so much for granted. Lots of luck for a long long happy remission. Patrick

[Steffi50 in reply to prbs2707]

Good to hear Patrick and looking forward. The future's bright ....

[skipro in reply to prbs2707]

Patrick,

May I ask what your treatment was and if it was uMRD 4?

I just had a marrow done and the lab can only test to uMRD 4. I've been on V + O R/R setting.

Thx

Skipro

[Phil4-13]

Steffi50, Great News! Great Joy!🙂 Sandra

[ChristyAnne_UK]

Such wonderful news!! Congrats, Steffi. Lang may yer lum reek*!

* Old Scottish saying: Long may your chimneys smoke = Long life & happiness.

[Steffi50 in reply to ChristyAnne_UK]

That made me giggle.

[ChristyAnne_UK in reply to Steffi50]

😊

[Horatio2]

Wonderful news!!!

[skipro]

Congratulations!!!!!

[Doggoneit101]

Congratulations! Wonderful news 😁

[Big_Dee]

Hello Steffi50

👏👏👏👏👏 Blessings.