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Hi everyone.

Just had my latest PCR test and thankfully still MMR down to 0.066%.

My history is

13%
2.1%
0.7% CCYR (6 months)
0.334%
0.118%
0.164% crapped myself here as “up” (2 years)
0.077% MMR (2.5 years)
0.066% 3 years

Testing never seems to get easier and although not much of a difference from the last test down is down. If there are any more turtles hopefully this will bring some comfort and hope to you too.

Al

 

So happy for you Alex...onward and downward :)

That's great news! Every little drop down is something to celebrate. Congrats on three years also! Was this a faster turnaround than usual with the testing?

Great News, Thanks for always posting all kinds of information. its really uplifting 

Hey Ian,

Thank you mate haha I wish 6 weeks this time. It was mental torture. I can’t complain here in the UK as it’s “free” through our NHS (national Insurance so not technically free). But yeah a 6 week wait is a bit of a joke to be fair. However I am glad I am down although you could argue it’s the same result as my last. Who cares though down is down.

Al

Thank you An. Down is always a good thing

Thanks Timo. Oddly I consciously had no involvement but I’ll take that 😝 

Cheers Patch. Hopefully I provide some hope at the least. Such an odd diagnosis this!

Good news, Alex.  You're in a safe place.  It is really fun when you get the SECOND zero - just wait!  I got that about 5 or 6 years in, then a recent undetectable, which would be 12 years in.  Patience, turtle!

Thank you Kat,

I am more than happy that I am in stable MMR. Getting to milestones is one thing, maintaining them is another. Huge weight off my shoulders. I am happy to be a turtle slow and steady wins the race they say. And we know CML is a marathon so all is good. Seat of my pants but all is good haha. I look forward to one day maybe getting a Undetected certainly would be incredible.

Take care Kat

Al

Good news, Alex. As a fellow turtle I can tell you slow and steady still wins the race. I've been CMR and 0.003 since 2016, I was dxed in 2008. Switched to nilotinib 150mg. 2x/day in Oct. 2020 and have been CMR ever since. If I remain CMR until 12/22 I'll try TFR. I never had a problem with the PCR tests, it was hearing the results that was nerve wracking!smiley Good luck!

Thank you! Wow that’s great news for you too! And good to know there are a few turtles about haha. I am in no rush to get to any particular level now I am just grateful to have made it to MMR and held that level for now. If I get lower then fantastic. And yes the reality of PCR results is always better than we expect. Nerve wracking it is indeed! Thank you.

Thanks Lisa.

A relief for sure. Not long you’ll be there too

x

Al 

I hope so. I find positive in this group, actually this is one group who has helped me the most. God bless us all. I often feel being in the medical field I would rather deal with this than any other disease. We all got this.....

Good news Alex - all the newbies like me (Oct 2020) need to hear about your continuing recovery.

not Sure which part of the country you are in, but in Oxfordshire my PCR results only take 2 - 3 weeks...

David

Cheers David!

I am in Kent, South East UK. Typically the doc gives the results 1 month after the draw. When I see the report I can see that the PCR test is taken 1 week after the draw so 3 of those weeks are unnecessary worry. But I understand we are so lucky for the NHS which I greatly appreciate.

Al

Congrats, I'm so happy for you! Onwards to downwards!

 

Regarding turnaround time: I'm in Greece, and it usually took 3 weeks to get my results, with the longest ever being 4 weeks. Guess how long it took this last time?

9 weeks!! Considering that I had also moved from a 3-month check to a 6-month check due to DMR, this was 8.5 months without a test result. Complete torture!

Informal info that I got from people working in the lab was that they didn't have supplies to run the tests, i.e. the PCR kits. Covid has hit them hard...

 

Regards,

Koralia

Really happy for you, Alex.

I have my PCR coming up early July. My last result was v slightly elevated so am feeling a bit nervous. I live in east London and the results take about two weeks. Interesting that you have it twice yearly and not three monthly - was that your choice? 
 

Sally

Sally,

3 months is the norm, but twice a year is still with protocol.

I always get my blood taken 3 weeks before clinic so there’s a result to discuss. Clinic is otherwise too retrospective for my liking. 
 

David. 

Thanks Sally.

It was my consultants choice that once his patients reach CCYR they have 6 monthly checks which for me is great. I don’t think I could handle that anxiety 4 times a year. And I suppose you could say it’s a good sign that docs have that confidence in TKIs that it only warrants x2 yearly.

I also think it weeds out a lot of upticks and plateaus having x2 yearly and shows a much truer picture of what’s going on. But that’s my personal view. Being a turtle I can see if I was tested x4 a year my drops would look quite tiny.

I am sure your elevation is just a blip as we see all the time on here. But I understand that worry when that occurs.

Al

Glad to hear your downward progress. 

My provider gave me the option of every 4 months last visit which I chose.  Watching the PCR numbers is like waiting for a tree to grow.  For me just walking away and checking months later feels better.

I hope to hear you've dropped even further in the fall.

Maria

Thankyou Koralia. Omg that’s a long time to wait. I’ll never moan again haha. Happy to hear of your DMR. Very fortunate indeed.

Take care

Al

Thank you Maria every drop is worth celebrating and glad I am trending down even if at a snails pace. Glad you’re well too

Al

Great news!  You must be so relieved.  I’m looking to you for inspiration since my numbers seem to be taking their sweet time to move downward.  

You’re giving me hope! 

Renee 

Thanks Renee. Yes maintaining MMR is what anyone would hope for so I am glad I have and had a very very small drop. I am not concerned about the speed of the reductions in fact as others have stated previously those who drop so much quicker seem to have quicker drops and quicker rises (who knows). All I know is it’s not really a race but we are in for the long haul. There is a lot to be said for stability. We often get disappointed with small drops but we gotta remember we are holding the line too.

You’ll drop too. Not when you want but you’ll drop.

Al

I’m so grateful for you posting your results and always giving so much support and good info. Just huge congrats to you and as someone said “onward and downward”!  

Hi,

Glad to hear it's trending down and below the magic MMR line. I know this was a concern for you.

A fellow tortoise

Chris

Hi,

Glad to hear it's trending down and below the magic MMR line. I know this was a concern for you.

A fellow tortoise

Chris

Cheers Chris!

Haha yeah I was a little worried it may never happen. As we've seen so many times just when we think things have stopped we get another drop. Any drop is good!

Al