CLL gone

[Stevevolo]

A service buddy of mine had CLL for over 20 years. At his last Dr appointment his Dr said he sees no more signs of CLL. Just curious if anyone else has had this happen or know someone who did

[Skyshark]

There have been cases of spontaneous remission. They are exceeding rare.

healthunlocked.com/cllsuppo...

There was report about a CLL patient with COVID-19 that ran a high fever for weeks. After which they were in remission from CLL.

Don't know how healthunlocked.com/user/hut... is getting on, still posting on here.

healthunlocked.com/cllsuppo...

[Stevevolo in reply to Skyshark]

thanks

[SofiaDeo]

I am convinced that emotional & physical stressors play a role in my CLL. If your friend was going through turmoil earlier in life & things got calmer later, I am not surprised the disease has lessened. Even "happy events" are stressors; getting married, changing jobs/starting a new career, buying a house, retirement.

ncbi.nlm.nih.gov/pmc/articl...

[Stevevolo]

thanks

[LeoPa]

Can you convince him to come over here, open an account and share his experiences? More details on his specific case would be most welcome.

[Stevevolo in reply to LeoPa]

I can try

[LeoPa in reply to Stevevolo]

Thanks!

[Canada11]

You'll probably get more interaction on your post if you "lock" it.

I'm very interested in this topic.

[Astro617]

My CLL specialist at the University of Washington told me once that she had had one patient who had a remission without treatment. Boy wouldn't that be awesome!

[NaturalWaze]

I wonder how a doctor determines “remission “ vs “CLL gone”? Just curious.

[Stevevolo in reply to NaturalWaze]

I assume by his blood work

[NaturalWaze in reply to Stevevolo]

Yes, I assumed that, too. But if the bloodwork shows no signs of CLL, how do they determine remission vs CLL being gone? When I completed treatment, my CLL dr told me my bloodwork looked so good that someone who didn’t know my history would see no sign of CLL.

[SofiaDeo in reply to NaturalWaze]

Flow cytometry or NGS testing can verify no abnormal cells present, or whatever small quantity. Versus merely looking at lymphocyte numbers & proclaiming "they are no longer elevated."

Remission can be "complete" or partial. With or without residual disease.

onlinelibrary.wiley.com/doi...

"4 RESPONSE ASSESSMENT

The iwCLL guidelines give a detailed description of the assessment of the treatment response. A detailed overview of these response criteria is beyond the scope of this manuscript. In essence the following response categories can be separated33: complete remission, partial remission, stable disease and progression, as well as refractory disease. In addition, the assessment of minimal residual disease (MRD) is an additional and increasingly important category of response assessment, resulting in four different response categories (Figure 1)."

Figure 1 from article

[NaturalWaze in reply to SofiaDeo]

I think I misunderstood the original post. I interpreted “no sign of CLL” as “you are done with CLL forever - it is gone”. I think now that SteveVolo’s friend is remission. Is that correct? Sorry and thank you for the explanations!

[SofiaDeo in reply to NaturalWaze]

I was attempting to answer *your* question regarding the differences; I have no comment on the friend. No way to guess what the doctor meant by what was said.

[WinJ3]

There is no cure for CLL yet. It sounds like the doctor was happy to report that your friend is doing well.

[Stevevolo]

Thanks for all the feedback. I got this information from a friend of the person in question. I will try to reach out to him, He got CLL from agent orange exposure as did I as we were on the same ship in Vietnam