Hi all - I was just posting this question on the CLL Group for Younger Aged People on Facebook, and I thought I would post it here as well.
When you were diagnosed with CLL, were you mutated or unmutated? If you were unmutated and received treatment, did you achieve MRD-? If so, have you relapsed? How long were you MRD- for?
The question is, do unmutated CLL'ers relapse sooner even if we're MRD-? Is there an average rate?
Other factors would come into play, like FISH results. Nothing in CLL is as simple as one prognostic marker indicating likely progression? Predictable would be nice, but.......
Unmutated, but 17p deletion. Going for BMB to see where I am post trial today. But speaking of Facebook, as a person who makes their living in small part by posting ads on behalf of companies on Facebook, not sure I would be so quick to be joining that group. You can target people by group, and you are essentially posting publicly to advertisers that you have CLL.
GL on the BMB. I am on a similar trial . 17p mutational status unknown I haven't been able to figure it out with three tests . They have not started to check for MRD negative yet I am nine months in the trial.
Keep us posted .
And, the fact that this is an UNLOCKED POST then every response if it's mirrored on Facebook as the poster says is equally open to identification as a personal Facebook advertisement that says "Here, notice me, I'm a CLL cancer patient." NOT cool!
Are you saying advertisers have access to private groups without the approval of the group admins?
Private groups on Facebook aren't truly private to Facebook. They make their money by taking data from all sorts of sources, including their own, to profile you. I can target people who belong to a group and show ads to them. I have a customer who sells self heating gloves and we target people with conditions like Raynaud's disease who have circulatory issues. If I can do that, I can find people who have other conditions. Everything you put on line is subject to be used to profile you. At least in the US. I know the EU has tougher regs but I don't know what they are.
Oh, that’s not nice, I’d accepted my public posts were analysed, but I don’t like the idea of private groups being analysed. I’m glad I’ve not joined any medical related groups. I think I need to reevaluate my use of facebook.
Thank you for the heads up.
best, rob
I am unmuted and have been MRD- since June 2016. I had 6 months of BR.
I was 45 years old at time of diagnosis and super healthy (November 2015). I started having trouble with choking while I was eating and I went to the doctor. The next thing I know...my throat was closing and they did surgery to find that I had CLL. I was diagnosed on a Friday and started BR the following Monday. Doctor said I was going to lose my airway.
I just had my blood done and I'm looking super good! I hope it stays that way! I am also 11q and C38+
The airway was closing from lymph node swelling? Thks and best wishes.
Yes...the lymph nodes got so big they were obstructing my airway. You couldn't even see my uvula. Doctor said it was super dangerous for me. It went from me choking when I ate to not being able to swallow or breath well in 3 weeks. Doctor said it was because of my "bulky tumors" from my 11q.
Im good now though and plan to stay that way!
Generally speaking, an unmutated CLL patient achieving MRD-, especially with 11q or 17p deletion will have disease progression sooner than a mutated CLL patient achieving MRD-. Of course, the period of remission could still be long. And achieving MRD- will tend to result in longer PFS (progression free survival) than those with MRD+, holding all other factors constant.
So someone like me with 13Q might stand a better chance of getting a longer MRD- even though I'm unmutated than someone who's 11Q unmutated? Interesting. All of this is so complex.. one decision to go with "containment" but not MRD or CR, might not be the best choice. So much thinking to do.
I am unmutated , CD 38- and Zap70 50%. No others deletions.
Dx 9/2013, FCR 6 cycles up to 4/2014, last three with only 75/50%.
MRD- after 3., 5, and 6. Cycle.
MRD after 1 1/2 year 0,1, than 0,3, than, 0,1, and 0,2 quarterly.
Now 0,4% after 3 1/2 years and all normal counts. spleen normal and no nodes.
Feeling well since end of FCR.
I am in a clinical trial & achieves CR but not yet achieved MRD negativity- but am very close. Unmutated. Hoping to learn tomorrows appointment that I am now MRD negative & CR. What are you? And what about everyone else out there?
Good end to a bad year... My MRD Results are in!
IGHV unmutated and trisomy 12
Unmutated patients on venetoclax?
Just got MRD negative 🎉
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