Is there a video regarding remission for CLL?

[Lavinia-Blue]

Hello,

Is there a video regarding remission for CLL?

I am interested in knowing what remission is (at the cellular level).

What causes the CLL cells to go into remission? How they turn into remission cells?

What is going on with the CLL cells while in remission?

How/why they come out of remission?

Why the therapies do not (seem to) affect these CLL cells?

Why the therapies do not get (kill) all of the CLL cells?

[cllady01 Former Volunteer]

Your questions are intriguing and important. While I am not able to answer the questions with any definitive answers, and do not know of a video that might help you, the following post by CLLerinOz may help you understand the process of targeted therapies and their goals in treating and keeping CLL at bay. There is no treatment that totally rids the body of CLL cells, although the treatment with FCR chemotherapy has been said to be a cure in some mutated patients, but not all.

I hope this helps you.

healthunlocked.com/cllsuppo...

[Lavinia-Blue in reply to cllady01]

Thanks.

[lankisterguy Volunteer]

Hi nalp,-

As cllady01 says, your query is intriguing. I suspect you are expecting a remission in CLL to be like a remission after a surgeon removes a mass from a lung or breast, and does not find any indication that the cancer spread beyond one organ. The surgeon has removed all the cancer cells from the patient's body.

But we CLL patients that have reached remission several times have a different perspective, our cancer is everywhere we have blood and lymph fluid. And some parts of the body like the nodes and spleen protect the cancer cells from treatment.

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healthline.com/health/leuke...

delhi.apollohospitals.com/b...

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Since CLL is considered Chronic and incurable, we measure sucess by how long until the cancer reappears. This is called PFS (Progression Free Survival). Since the average CLL patient is 71 years old when diagnosed, getting a PFS of 15 or 20 years looks similar to being cured.

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At the other end of the spectrum are patients like me. When I reached MRD-U ( Minimal Residual Disease- UnDetectable or UnMeasurable) in my blood and bone marrow for 12 consecutive months, my doctor and I decided to see how long it would take my CLL to come back. (That was my 4th remission btw). It took my CLL only 4 months to go from 0 to 100- cancer cells out of 10,000 leukocytes.

However those 10,000 represent a tiny fraction of the total number of white blood cells.

see sciencedaily.com/releases/2....

SNIP Every day, the human body manufactures and destroys about 100 billion neutrophils-

So if there is somewhere in the body where 10 million cancer cells are hiding, the patient will be MRD-U but all those cells can begin reproducing immediately.

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You asked about more information - please try this

cllsociety.org/?s=remission

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Len

[Lavinia-Blue in reply to lankisterguy]

Thanks.

[LeoPa]

My understanding was that remission means that CLL cannot be detected in the patient anymore. I'm speculating here but how about this? Treatment kills off almost all CLL cells. Or in the case of fcr perhaps all of them. This means that the more aggressive quickly reproducing CLL cells are killed off mostly because they form the majority. There might be a few CLL cells left over, though undetectable, still present. Now if these few cells are the fast cloning variety the remission will be shorter. If they are a slower multiplying variety the remission will be longer. Probably there are lots of different CLL cells with varying speeds of multiplication. The more of those with faster multiplication the faster the disease progression. I don't know if this is right but this is the way I think about it.

[scarletnoir in reply to LeoPa]

I have no idea if you are right or not, but if you are it may explain my experience of CLL - I went from diagnosis to treatment in 5 months, so the CLL was multiplying very rapidly. Four doses of BR chemo brought my bloods down to MRD-U (less than 1 cell in 10000). My understanding is that chemo attacks rapidly multiplying cells (as you say) - and most of mine were certainly doing that, I think!I am still in remission 9 years on, so presumably the remaining CLL cells lurking somewhere are the slow-growing type...

(If this is nonsense, please will an expert correct!)

[LeoPa in reply to scarletnoir]

Well , if you are already 9 years in remission I think you are one of those who can be considered cured. Congratulations! If I ever need treatment I hope to be like you 😁

[scarletnoir in reply to LeoPa]

I hope so, too. It's an odd thing - going so rapidly from diagnosis to treatment was scary, but maybe in the end it was a 'good thing'. Who knows?