I understand that the new meds provide a better quality of life and are effective if you have aggressive forms of CLL( ex TP53 and or Unmutated IGVH.
Any indicators that overall life is extended?
I’m seeing that old studies show averages at around 10 years only 20% of us are still here .I understand that the new meds have only been around ten years but is there any evidence pointing to longer life?
I have 11 q and unmutated IGVH. I’m 60 in very good health, no comorbidities and just started Accalabrutinib 6 weeks ago ( going well so far!)
I really don’t want to offend anyone or be morbid, just want to know best guesses or indications from any studies . Whatever cards I’m dealt I’ll make the most of it
thanks!!
Written by
Teemed
To view profiles and participate in discussions please or .
Simply by being a member of this community and knowing the importance of TP53 IGVH has added years to your life. You know how important it is to find a CLL specialist, or at least question whether a recommended treatment is the best choice for you. Sadly, many who see a general oncologist, who hasn't the time to keep up with new CLL treatments, or know the indications for starting CLL treatment and pretty well manages all lymphoma patients the same, are going to be treated before it is necessary, or not be given tests to determine which treatment is best for them: cllsociety.org/?s=test+befo...
On this very topic, quoting my reply of yesterday:
"The RESONATE-2 first line ibrutinib vs chlorambucil clinical trial of 269 patients reported "Overall, with up to 7 years of follow-up, the median PFS for patients in the ibrutinib arm was not reached (HR, 0.160; 95% CI. 0.111-0.230), equating to an 84% reduction in the risk of progression or death." We have early ibrutinib trial participants entering their second decade of maintenance of their CLL. A significant percentage of those dropping out, did so because they couldn't tolerate the side effects. Second and third generation BTKi drugs have made big reductions in the severity of those side effects, so we should see even longer median progression free survival times with these new drugs."
If you take a 'helicopter view', treatments prevent death by removing the impact of CLL/SLL on our bodies, but then we have a lesser risk from possible adverse events from the treatment. BTKi drugs revolutionised CLL/SLL treatment and we have 3 approved BTKi drugs and 12 in clinical trials. Importantly, none of the third generation formulations have yet been approved. Later formulations are increasingly selective for CLL (or more correctly maturing B-cells), so there's a reduced likelihood of off target adverse events. We also know that, with the exception of risk of developing high blood pressure, the risk of an adverse event occurring reduces year by year with BTKi drugs.
With people living longer, it's a growing market for new treatments, hence the large number of BTKi drug trials (We know that if you become resistant to an earlier generation covalent bonding BTKi, you can generally maintain control over your CLL by switching to a non-covalent, third generation BTKi. healthunlocked.com/cllsuppo... )
The older 'chemo' treatments generally didn't provide long remissions if you were unmutated IGHV. At diagnosis, the mutated/unmutated split is around 50/50. At the time of first treatment, the ratio is skewed towards unmutated IGHV, because this group tends to have faster progression. The approximate third of us who never need treatment, are more likely to be in the mutated IGHV group. So as you noted, with the newer, targeted treatments being 17p del, TP53 mutated and or unmutated IGVH isn't the concern it used to be.
The older 'chemo' treatments also came with the potential legacy of causing secondary blood cancers. About 10% of those treated with FCR could subsequently develop AML or MDS. The new targeted therapies don't work by scrambling the CLL DNA so that hopefully apoptosis will kick in and kill the cancerous cell. They enable other apoptosis pathways to take effect. So avoiding older chemo treatments, immediately eliminates that 10% risk and the more than half of the treated population with unmutated IGHV, 17p del or TP53 mutated markers do far better. What's more, older chemo treatments selected for the tougher to treat 17p del and mutated TP53, so avoiding older chemo treatments helps here too.
Currently, CLL researchers are collecting data to work out the prognostic markers to identify who will do best on fixed term combination treatments vs maintenance treatments. Some of us may even be able to have drug holidays after long enough on a maintenance treatment. Not being on a treatment drug largely removes the adverse event risk. There is also the expectation that IGHV mutated folk could see their CLL cured from a fixed term combination treatment. We know about 55% of mutated IGHV have indefinite remissions - now passing 20 years - and that's with the 10% AML or MDS risk. What's more, FCR is only recommended for those under 65. With the median age for CLL/SLL diagnosis being around 70 and treatment typically occurring around 5 years later or around 75, because there isn't the age limit for combination treatments, that could potentially really boost the overall survival time!
The major outstanding issue preventing us from living a normal life expectancy is dying from an infection. CLL and CLL treatments both compromise our immune system. CLL researchers see restoring our immune systems as the last remaining issue to tackle to give us all a normal life expectancy. Infection prevention and management is a factor that we can significantly control. It just makes sense to get up to date with all your non-live vaccinations as soon as you are diagnosed with CLL and maintain them.
Vaccinations - for flu, pneumonia and other things
Thanks for the inspiring response I am fortunate to have a specialist at Md Anderson but as I wake up from the shock of being dx with this and thyroid cancer and now starting Calquence Tx, I find that I need to re-educate myself as I wasn’t absorbing info well before now.
Well, considering the average age at diagnosis is 70, it would be surprising to see the majority of folks living "30 years after diagnosis" anyway. With newer testing catching this diagnosis earlier, we learn to watch out for infections, anemias, platelets disorders, etc. and address things sooner rather than later. So IMO our lifespan shouldn't be affected greatly (assuming a milder variant), assuming no other disease states. Especially if one started making healthier choices regarding food, exercise, and lifestyle, post diagnosis.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
(We know that if you become resistant to an earlier generation covalent bonding BTKi, you can generally maintain control over your CLL by switching to a non-covalent, third generation BTKi. 
The Improvisational Oncologist - The New York Times
First time post!
Treatment FCR with unmutated IGVH—clarify pls! 
