Silly question....

[icklemand]

Hi I was diagnosed with CLL in October 2013 I had treatment in October 2014 (bendamustine and Rituximab) and finished treatment in March of this year. I saw my haematologist yesterday and he said there is no trace of the leukaemia in my blood . My question is do I still have CLL?

[AussieNeil Partner Administrator]

That's not at all a silly question, but gets to the heart of the issue we have with CLL. CLL is currently incurable, so while your haematologist says that there is no trace of leukaemia in your blood, all that means is that our current medical technology is incapable of detecting it. You have minimal residual disease, which is the best outcome you can expect from current treatments. Test instruments may test millions of lymphocytes and not find a single CLL cell. That just means that if they tested billions or trillions, they might find some - or perhaps not; there might be some hidden away in a small lymph node or more likely in the deep recesses of your bone marrow. You may be cured, but unfortunately it is unlikely. Some patients treated with FCR over 10 years ago have not seen their CLL return, and perhaps they are cured; only time will tell.

Unfortunately for most of us, those few CLL cells that escaped being killed during treatment, slowly start multiplying and CLL eventually returns in our blood. Remission could last from months to many years, but sadly, nearly always the CLL returns, and this time with CLL cells that have proven tough to beat with the first treatment. A subsequent treatment with the same drugs typically doesn't give as long a remission as the first treatment, but may respond better to a different treatment.

Celebrate and enjoy your remission, but be resigned to going back onto Watch and Wait...

Neil

[Hershey in reply to AussieNeil]

What a wonderful and helpful response you wrote.

[Cammie]

Icklemand

Not a silly question at all!

Your medic is being well a medic lol

My take on this (I'm in the same position after FCR) is that you are in remission in so much as there are no cll cells left in the blood your treatment has killed them off.

In medical terms this is called complete remission.

However, there may be residual cancer cells in the bone marrow!

You will have seen on this site and elsewhere mention of refractory or relapsed disease? This is when cll returns after successful treatment. You will also have noted the phrase "progression free survival" where new drugs are being monitored to see how long after treatment it is until cll starts to develop again.

All in all in most patients cll returns after a period of time that can vary dramatically depending on treatment and your particular condition.

In general there is currently no cure for cll but the treatment we go through helps to keep the condition under control.

Remission can last years!

The only way to find out the full story for ourselves is a bone marrow biopsy to find if there is any residual disease in the blood making factory. This is not normally done after treatment, however, if you go on to a new drugs trial after treatment or specifically ask for one you can obtain them.

Myself I'm in remission looking forward (I hope) to many years of progression free survival, planning holidays with my family and friends , enjoying seeing my granddaughter grow up into a teenager, playing some bad golf and all the other things that make up a normal life.

Enjoy your time in remission! We are some of the lucky ones.

Geoff

[ballyhoo]

My doctor also told me that there was no sign of of my cll after treatment. But he said it will be back. So it's w+w and try not to worry. Hopefully you have a very long remission. I also like to thank everyone on this site for the great information shared, Best wishes to all.

[Quarry]

Not a silly question - it is only slowly I am understanding this remission (or some people saying 'cured') term....

Is my thinking below wrong? I have not tested off a doc, so I could be talking the proverbial ****!

Our CLL cells (like all blood cells) are made in the bone marrow, which is producing millions a day. The CLL cells come from, essentially, a 'manufacturing' fault.....one or more corrupted, dodgy templates in the bone marrow (out of thousands of templates). The quality control processes in the bone marrow do not pick up these errant CLL cells during manufacturer and they get sent out of the factory into our body: and then cause havoc. Unfortunately our body has no complaints/returns capability (at least on CLL cells)!

Drugs can sweep them all away from the body (and perhaps switch off the template?), but the template is still there (it is not destroyed by the drugs). At sometime, manufacturing with the dodgy template is re-started....and we see CLL coming back

[AussieNeil Partner Administrator in reply to Quarry]

A while back quite a few CLL experts thought that there was a progenitor stem cell for CLL cells. The different blood lines do have progenitor stem cells and daughter progenitor cells (I forget the correct terminology, but there are special mechanisms used in bone marrow to enable the production of the billions of blood cells we need every day without wearing out the progenitor stem cells). That idea seems to have gone out of favour with the competing idea of clonal CLL 'stem cells', which may not necessarily have arisen in the bone marrow. Don't forget, healthy B-Lymphocytes grow by division to fight off a particular infection. While normal B-Lymphocytes do start their life in the bone marrow, they go through a maturation process where they become keyed to a particular antigen in a lymph node. CLL cells are reasonably mature, so I suspect they could sometime originate from a copying mistake in a lymph node or the spleen (which can be considered a giant, specialised lymph node that also filters the blood.

Neil

[Quarry in reply to AussieNeil]

The complexity grows...as always!

So, does this mean my manufacturing analogy is ok if amended to:

Our original CLL cells (like all blood cells) are made in the bone marrow, which is producing billions of cells a day. The CLL cells come from, essentially, a 'manufacturing' fault.....one or more corrupted, dodgy templates in the bone marrow (out of thousands of templates). The quality control processes in the bone marrow do not pick up these errant CLL cells during manufacturer and they get sent out of the factory into our body: and then cause havoc. Unfortunately our body has no complaints/returns capability (at least on CLL cells)!

One in the body, CLL cells are in our blood: they hang out in lymph nodes, where they can replicate (and the replications contains all the faults).

Drugs can appear to sweep them all away from the body/blood (and perhaps switch off the template?: however, the template is not destroyed by the drugs), though some CLL cells can still remain hidden in the lymph nodes. We are in remission!

At sometime, manufacturing with the dodgy template is re-started or any hidden CLL cells in the lymph nodes can later restart to replicate....and so we see CLL coming back.

[AussieNeil Partner Administrator in reply to Quarry]

I'm not convinced that CLL cells always originate in the bone marrow or how you would ever prove that. Likewise I don't know why the remaining CLL cells seem to lay low during the remission period. Perhaps once they have been knocked back to very low numbers, they are not able to influence their microenvironment until their numbers rebuild sufficiently.

This is conjecture on my part and I too would like to know what really happens.

Neil

[Cllcanada Top Poster CURE Hero in reply to Quarry]

We make 100 billion...WBCs in a day... not all are B cells, but your quantities are way off, at millions...

merckmanuals.com/home/blood...

~chris