How many of us develop large b cell lymphomas

[cartwheels]

Just curious been on ibrutinib 2 years now and my bloods are perfect etc , but I still have a swollen belly which although my belly button has gone back in now it's still not how it was a few years ago ,so it's got me thinking could I have lymphoma still in my abdomen or am I overthinking this all my other nodes disappeared within weeks on ibrutinib but my abdomen has never gone back to normal I feel fine and have 3 monthly bloods which as I say are perfect but I have not had a scan since treatment begun so I suppose there is always doubt in my mind.

[Cllcanada Top Poster CURE Hero]

Its called a Richter's transformation... to diffuse large B cell lymphoma. The current rate is about 5.5% of patients ... and 85% go to DLBCL, but Hodgkin's Lymphoma is possible as is the rarer PLL.

Richter's usually comes with a fairly rapid onset of B symptoms and patients feel very, very ill.

There are also blood markers that might suggest a transformation...

If a doctor suspects a possible transformation, then a PET scan would be done to see 'hot nodes' ... then a biopsy is performed to confirm it.

I had a CLL to DLBCL in 2012 , but mine was outside the lymph system, more like a secondary tumour... felt fine at the time, so it varies widely...

~chris 🇨🇦

[cartwheels in reply to Cllcanada]

Thanks Chris and glad to see you are well now that's a very good description ,as I say my bloods are fine and I feel fine apart from the usual achey joints in the morning it's just as my abdomen is still swollen and not as it was I often wonder if there could be something in it . Of course my wieght has increased since I have been on ibrutinib but I don't think that's the reason why my belly button has not sank back in as it used to be

[Cllcanada Top Poster CURE Hero in reply to cartwheels]

Best talk to your CLL doc perhaps a CTscan would clarify things... there are many reasons for a distended abdomen than nodes and CLL...

~chris 🇨🇦

[cartwheels in reply to Cllcanada]

Thanks I have mentioned it in the past and he doesn't seemed concerned but will push for a scan at my next consultation in 3 months

All the best

[johnl in reply to Cllcanada]

Chris, Do you think it's possible to have RT when MRD negative?

john

[Cllcanada Top Poster CURE Hero in reply to johnl]

I would highly doubt it... but never say never...in CLL 😀

However... I had 6 months of FR, and was in a clinical remission (MRD) wasn't used, and I transformed about a month after treatment.. so low count lymphocytes, might not tell the whole story.

In retrospect, I suspect I had transformed much earlier, perhaps by as much as 18 months, but that it never became evident...and the FR treatment, simply tipped the scale and the DLBCL, saw an opportunity and took off...

~chris 🇨🇦

[J_88 in reply to Cllcanada]

Chis the RT you had wasn't it a differen't one that was curable?

[J_88 in reply to J_88]

Theres one that you get that can be cured, than there was one that if you get it it's not curable, am i right?

[Cllcanada Top Poster CURE Hero in reply to J_88]

Well yes and no... it was a transformation to the common DLBCL. But this usually occurs in the nodes .. in my case it occurred in my spine, and grew out to my skin and was a sarcoma... a solid tumor. I recently read of a patient that had a Richter's is his penis... some get it in their stomach,lungs, just about anywhere...

For me ...the fancy term is extra nodal... outside the nodes.

They are generally more treatable, ... I still had less than a year overall survival prognosis... ☹️

But we hit it with everything , the treatment nearly killed me, and has done a lot of permanent damage, I had my brain fried and my heart damaged... both plague me today, almost 7 years later...

But I'm alive... 😊

I have know patients with nodal RT who survived and went on to stem cell tansplants and patients like me with extra nodal, who did not survive.

All Richter's is a very serious development of CLL, so don't assume it can be cured, it is not that cut and dry...

~chris 🇨🇦

[J_88 in reply to Cllcanada]

it happens in about 5% of CLLers?

[Cllcanada Top Poster CURE Hero in reply to J_88]

About yes.. I read a recent report of 5.5%, and there have been community studies reporting 10%, but it varies due to many factors including age, comorbidities and ethnic mix ...

Type of treatment might play a role.. as well...

Also some transform to Hodgkin's lymphoma or PLL, which is more treatable than DLBC, there are other very rare forms as well...

But generally I use 8% transformation...

~chris 🇨🇦

[J_88 in reply to Cllcanada]

how long have you had CLL now Chris 21 years?

[Cllcanada Top Poster CURE Hero in reply to J_88]

Yup... I was diagnosed in 1998.. age 51 ...have a look at my profile, there is a timeline there...

My sister was diagnosed 2 year ago so we are 19 years part in diagnosis, but just 5 years apart in age...

[J_88 in reply to Cllcanada]

i'm only about 1 year into diagnosis now. Still kinda worried about the future.

[Cllcanada Top Poster CURE Hero in reply to J_88]

Sure... we all are, do what you can to improve your overall health, go see a CLL specialist to get on the right track... and live your life... It could be 15 years before you will need treatment and everything will be different and better... perhaps a cure... but time will tell.

[Justasheet1 in reply to Cllcanada]

Chris,

Wonderful advice for us all.

Jeff

[Jonquiljo in reply to Cllcanada]

RT is not higher in treated (vs un-treated) patients?

[Cllcanada Top Poster CURE Hero in reply to Jonquiljo]

General its a 40/60 split untreated/treated in the FC, FCR, bendamustine/rituxan [BR] days, but with novel agents, I think this may change as people are living longer.

~chris 🇨🇦

[Jonquiljo in reply to Cllcanada]

So RT is not a result of treatment (likely) at all?

The longer we have CLL, the longer we have a probability that RT will happen?

Doesn't that imply that it would be better (in terms of RT) to get treated earlier rather than later? Less candidate cells to transform.

[Cllcanada Top Poster CURE Hero in reply to Jonquiljo]

Its about risk... treatment increase the risk, so does time from diagnosis, age, male sex in a 2.5:1 ratio, TP53, 17p, complex karyotype, T12 wth Notch1, C-MYC activation, SAMHD1, CDKN2A mutation.. LRP4 polymorphism, stereotyped IGHV with VH4-39 confers a 20 rimes greater risk..., CD49d, and so on. IGHV-unmutated are at an approximate 4-fold risk of RS relative to IGHV-mutated patients.

There is an inherited predisposition, and Epstein Barr Virus plays a role...

Very complex.

bloodjournal.org/content/12...

Dr. Allan is the current world leader in clinical RT ..

youtu.be/MDud9uPwCoo(Not working as expected?)

~chris 🇨🇦

[livinglifewell in reply to Cllcanada]

Your story is curious and triggered a memory of my extranodal lymphoma that manifested in bilateral eyesockets extending into the lacrimal glands. It rapidly grew following major abdominal surgery for a metastatic gastric carcinoid when my body was stressed to the maximum. Prior to going into the surgery, I was in a stable partial response from high dosed ECGC. Standard radiation was the treatment which was hell and has plagued me now several years out. I refer to it as radiation fallout.