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

[prbs2707 in reply to skipro]

Hi Skipro, I had V&O starting march 2021 and completed March 2022. Pretty much problem free after a tricky start (see profile if interested). Not sure what umrd4 means? I had 2 tests the first about 9 months after starting treatment and the second a month after completion. Both results were presented to me by my consultant as "you have achieved UMRD, well done!" Not sure if that answers your question. Best wishes. Patrick

[skipro in reply to prbs2707]

Patrick,

Yes

Thank you!!!

[skipro in reply to skipro]

Wondering if you had fatigue, diarrhea, muscle pain or infections on the V phase?

Thx

[Steffi50 in reply to skipro]

Some stomach problems, diarrhea, muscle pains until they cut the dose to 300 as they felt 400 was too strong for me. I sail along on 300 so clearly that was the right move for me and was reassured would not affect the outcome. Patrick might have a different experience

[skipro in reply to Steffi50]

I've read the Murano paper on dose reduction to as low as 50 mg and it appears to have no impact on outcome.

[Steffi50 in reply to skipro]

Hi Skipro, I would like to know what UMRD4 is too. I wasn't given a number. My first 'test' at nine months was contaminated so I only have the detail I gave above.

[skipro in reply to Steffi50]

Good morning

umrd 4 means you had no measurable CLL in 1 of every 10,000 wbc's so that's good news!

[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.

[Silvafoxe]

Congratulations to you. As someone already said, now live your life. I’m sure doctor will probably want a check in from time to time to be sure no relapse but you’re now good to go. Blessings

[Steffi50]

🙏

[LeoPa]

Central Nervous System 😄?

[Stamphappy]

Thanks for sharing such wonderful news!! 😊 So happy for you!! 🤗

[Steffi50 in reply to Stamphappy]

Thanks. Stamphappy and all good wishes to you too 🙂🙃