Richters transformation

[Feeb7]

What is the prognosis for a person with richters transformation?

[Cllcanada Top Poster CURE Hero]

It depends... many factors come into play... but the median survival often referenced is about a year.

I was given a figure of about 8 months... I'm just about at 59 months, post Richter's diagnosis.

More

hematologyandoncology.net/a...

~chris

[PaulaS Volunteer in reply to Cllcanada]

So you're now 59 months post-Richters, Chris! When you get to 60 months it will be 5 years! That sounds like a rather significant milestone.

Wishing all the best for you, and for you too, Feeb7 , as you have the biopsy soon.

Paula

[Mystic75 in reply to Cllcanada]

Hi Chris,

Thank you so much for all that you provide on this website. I am new to the site and I am so full of gratitude to you For background, my husband was diagnosed with CLL in 2009, which the FISH test at the time indicated the disease was indolent and long time prognosis positive. A recent FISH test indicates a complex Karyotype with an addition 17p/TP53. We are scheduled to meet with a CLL specialist on Thursday.

That being said

[Mystic75 in reply to Mystic75]

You can tell I'm new to this site - let me start where I left off....

I am so full of gratitude to you, AussieNeil and many others who share your stories despite the challenges you are each going through. It gives me strength and a reminder that no matter where we live in this world, we can connect on this.

Thank you so much,

M.

[Cllcanada Top Poster CURE Hero in reply to Mystic75]

Thank you so much Mystic75... I see my CLL specialist the day after you to try and plot a path forward..

Your name reminded me of one of my favourite songs...

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

[Mystic75 in reply to Cllcanada]

And now it is one of my favorite songs as well! Thank you so much for posting! I will be thinking of you on Friday and hope you keep us all updated. You are such an important part of this forum and contribute so much...I know how much I appreciate it and I just joined!

Big hug,

M.

[pkguk2 Partner CLL Support Association]

Unfortunately, diagnosis of Richter's transformation is not good news, mainly because it can be very aggressive and treatment options are currently limited. Depending on the fitness of the patient a Stem Cell Transplant may be an option, and there are a limited number of trials of targeted therapies which your CLL specialist will know about. Survival rates depend on so many factors, but are generally quoted in months rather than years, although there are notable exceptions. Sincerely hope that if the question relates to yourself you will find positive advice from your specialist.

[manzelka]

what are the symptoms that show the cll has transformed into Richters?

[Cllcanada Top Poster CURE Hero in reply to manzelka]

General patients exhibit similar B symptoms as CLL and are quite ill. Rapidly enlarging node [s], or as in my case a tumour...

LDH and or B2M levels are rising rapidly, or rapidly rising absolute lymphocyte count [ALC] counts, mine went up about 30K a week.

It is usually diagnosed with a CTscan or PET scan, and a biopsy is used to confirm the type, because Richter's can transform to a few different lymphomas..., but highly aggressive diffuse large B cell [DLBCL] occurs in about 70% of cases...

Richter's can occur at any time, but it is more frequent after treatment, age and time since diagnosis are also factors .

Richter's is pooly understood and treatments are limited, but there are a couple of new clinical trials that are showing some good responses...

While the diagnosis and prognosis is grim, it can be cured amazingly... but the CLL remains... 🤔

~chris

[Justasheet1 in reply to Cllcanada]

Chris,

Did you see this?

Novel Regimens Explored for Rare DLBCL Subtypes

onclive.com/web-exclusives/...

Jeff

[Cllcanada Top Poster CURE Hero in reply to Justasheet1]

Richter's isn't a double hit lymphoma... they are trying Keytruda... PD-1 checkpoint inhibitors

[Justasheet1 in reply to Cllcanada]

Kinda confusing all the subtypes. I just know they all blow.

[Cllcanada Top Poster CURE Hero in reply to Justasheet1]

Yes Richter's it genetically different and has subtypes etc... its whole different ball game...

[Justasheet1 in reply to Cllcanada]

Chris,

Is this relevant for Richters?

marketing.onclive.com/acton...

Jeff

[Cllcanada Top Poster CURE Hero in reply to Justasheet1]

Never been tried as far as I know.

[Feeb7 in reply to Justasheet1]

Don't like the sound of blow!

[Justasheet1 in reply to Feeb7]

Don't fret yet. Fingers crossed and 🙏🏻 .

[Hoffy in reply to Cllcanada]

I know someone who was on Keytruda after Richter's

then did a BMT and is doing well so far.

[manzelka]

Thank you for your replies regarding Richters.

i don't think my husbands problems can be this thank goodness.

having been on Ibrutinib for a year and a half,he has been having problems which may or may not be side effects of the drug or something else, his haematologist is looking for anwers but unsure yet as to what they might be.

My good wishes to anyone who has this.

I am so grateful for this site and the support to be found from the people on it.

[Cllcanada Top Poster CURE Hero in reply to manzelka]

Richter's has a fairly typical look to it, but I have to say, my case was completely different than the norm...

I felt great, no illness, no B symptoms, just a lump and rapidly rising absolute lymphocyte count [ALC] count...

So while there is typical Richter's there are also very different presentations.

Hope you get to the botton of your husband's situation, certain seek a second opinion, from a CLL specialist.

~chris

[Feeb7 in reply to Cllcanada]

I have rising LDH , ALC and B symptoms. Lymph node biopsy scheduled will know more then .I don't know much about it at this stage, but what I read online is not very good so I'm avoiding reading.

[Cllcanada Top Poster CURE Hero in reply to Feeb7]

Good move..no point in getting worked up over nothing... the biopsy is the gold standard test, for yes or no on the Richter's diagnosis.

Fingers crossed its negative for DLBCL, Hodgkin's or PLL...

[manzelka in reply to Feeb7]

I hope all goes well for you Feeb7.

[pkpayne]

Yes, definitely fingers crossed it's negative. Thinking positive for you. Keep us posted.

[Feeb7 in reply to pkpayne]

Thank you

[Feeb7]

Had biopsy ..wait time now . Hopefully not long

[Cllcanada Top Poster CURE Hero in reply to Feeb7]

Its the longest hour... metaphorically... hope for a good outcome.

~chris

[Feeb7 in reply to Cllcanada]

Thanks for your replies

[Feeb7]

Diagnosed.. Never felt more alone in my life..

[Newdawn Administrator in reply to Feeb7]

Oh Feeb, I am so sorry to hear this. Do you have support there and someone to help you?

Please be heartened by Chris's experience. There are treatments and there is most certainly hope.

Have your doctors suggested the next treatment move?

This is so tough for you and I'm sending massive best wishes.

Newdawn

[PaulaS Volunteer in reply to Feeb7]

I was so sorry to hear this, Feeb. But you are NOT alone... There are lots of us here who will be rooting for you. Remember that even when things look bad, unexpected things can happen that change the whole situation and work out OK.

Do keep in touch...

Wishing the very best for you,

Paula

[manzelka in reply to Feeb7]

So sorry to hear your news.A bit late I know. I haven't been on here much.

Husband having problems.

I do hope you are now feeling somewhat better than when you did your original post and you have support now.

All best wishes.

[Cllcanada Top Poster CURE Hero]

I find it very difficult to know how to respond, but this takes time to process.

I could say I know how you feel, but I don't... but I know how I felt on this news.

Keep hope central.

~chris

[Justasheet1]

Feeb7,

Here is a link to the CLL Society by Dr Koffman. Some interesting information for you. 🙏🏻🙏🏻🙏🏻🙏🏻

Jeff

cllsociety.org/2017/06/ibru...

[Justasheet1]

Feeb7,

Hope all is coming into focus. Here's a good story for you to read from the CLL Society.

cllsociety.org/newsletter/q...

Jeff

[Todd52]

I don't understand the varieties of richters. I have CLL but am having symptoms similar to non Hodkins lymphoma. I have a low grade intermittent fever that peaks at 95.5 in the afternoon and an itch feeling.

But the richters symptoms don't include these.

Very worried.

[AussieNeil Partner Administrator in reply to Todd52]

CLL IS one of the Non Hodgkin's Lymphomas! I too have had low grade fevers with CLL 8 years ago, when I was constantly fighting off infections before I learnt fully what I needed to do to reduce my risk of exposure.

Can you explain more about the itching?

Neil

[Todd52 in reply to AussieNeil]

Thank you fir replying. The itching is Tiny little sensations No rash or marks Worse at night

The low grade fever will not come down with Tylenol so I don't know what to make of that I had quite a bout with bacterial pneumonia last month and my system is wrecked with antibiotics

[AussieNeil Partner Administrator in reply to Todd52]

Skin involvement with CLL (in many different ways) is reasonably common as are temperature regulation issues, which can be due to the challenges of fighting off infections with our compromised immune systems or due to the poorly understood way our immune system's temperature regulation is affected by our CLL. You've given very little in the way of background to your CLL journey, but I doubt you have Richter's to worry about, particularly if you've had this situation for a while, because RIchter's is a fast growing transformation.

I suggest you introduce yourself as a new member in a separate post, informing our community of when you were diagnosed and any significant incidents since then (sounds like you've been pretty ill - sadly another common factor you'll share with many of us) and ask for feedback from others that may share your symptoms. There can of course be a whole range of other non-CLL causes behind your symptoms and perhaps feedback from others may prompt you to ask questions of your medical team that will help you resolve your current health challenges. We can't of course offer you medical advice - just better equip you with some background understanding so you more proactively work in partnership with your medical team.

Neil

[Todd52 in reply to AussieNeil]

Thank you, I will do that. I just need to find that forum

I just celebrated my 10 year CLL diagnosis on August 31. I was 42 years old when I was diagnosed

For the past 10 years with my CLL has been very time. I have not run any fevers or had any symptoms other than occasional night sweats.

I haven't had any issues so this low-grade fever which will not come down with Tylenol and the itchiness are concerning

[Todd52]

Fever is every night. 99.5-100ish.

[Cllcanada Top Poster CURE Hero in reply to Todd52]

I agree with Neil... Richter's carries a lot of symptom baggage with it, generally the same as CLL B symptoms, but multiplied by a factor of 10.

You need to see your CLL doctor to get a handle on this, but low grade fevers are not uncommon in CLL., and often caused by other issues.

~chris

[Todd52 in reply to Cllcanada]

Thank you, that is comforting. I introduced myself in another post.

I am especially sensitive to Richters because my brother died from it in 2004. I've always wondered if there was a familial connection with Richters like there is with CLL

My fever is slowly getting a little higher every day and is not responding to Tylenol, but it is still peaking at around 100 before it falls off around bedtime to normal

[Cllcanada Top Poster CURE Hero in reply to Todd52]

I'm a Richter's patient, so it is rather at the forefront of my research.

Sure genetics may play a role, c-MYC and NOTCH1 genes, Trisomy 12, TP53, 17p etc. all increase the risk of transformation...as does age and the length of watch and wait period.

Which gene drives CLL can have a profound effect on transformation particularly VH4-39 seen more in Trisomy 12 and confures about a 25 times greater chance of transformation.

Tylenol masks a fever... don't use it... take your temperature without it... bet its higher.

~chris

[Todd52 in reply to Cllcanada]

I'm not sure I will ever understand all that.

When your transformation from CLL to richters occurred, was it a matter of days or weeks before you feel bad?

I haven't felt good since July 30, but The peak of my daily fevers haven't really progressed that much

[Cllcanada Top Poster CURE Hero in reply to Todd52]

LDH leveks and Beta 2 microglobulin, often show indication of transformation as the LDH rockets up...

In my case I had just finished 6 rounds of FR and felt TREMENDOUSLY good... never had LDH higher than high normal.

Then a lump... and CTscan and biopsy and we were off on the Richter's adventure...

I'm odd all the way around...

usually transformation comes with a great deal of malaise, flu like sickness and mind numbing fatigue, weight loss, a fast downhill slide...

If you aren't feeling well get seen to by your local guy and get tests run.. he can talk to Byrd if needed. You are fortunate if it is RT, OSU has a clinical trial that is treating it very well...

~chris

[Todd52 in reply to Cllcanada]

Thank you Chris, my doctor here has been in touch with Ohio State and is running test now

Part of the confusion is my body is so wrecked by a plethora of new experimental antibiotics to treat a bacterial pneumonia I just got over. They all have different side effects, some of them lower platelets temporarily, so it's hard to tell what is going on

[Ausrine]

How are you Feeb7?

[Feeb7 in reply to Ausrine]

Not doing too good but hopefully things will change