RITCHERS TRANSFORMATION

[lucky98]

if ritchers transformation confirmed how early the treatment should be given

[Ausrine]

The earlier the better. For me it spread all over in 2 months .

[lucky98 in reply to Ausrine]

after diagnosis how much time doctor took to give first dose of chemo becoz in our case we are still waiting for biopsy report for second opinion already delayed by month

[Ausrine in reply to lucky98]

2 days after diagnosis

[lucky98 in reply to Ausrine]

hi how was your physical condition when you are diagnosed with ritchers please write in detail since mine is still not yet diagnosed and its 1 and half month my onco suggested one more pet scan before final correct diagnosis i am clinically doing well no b symptoms blood counts normal hisopathologist not able to understand since there are mixed cells under microscope so they cannot give incorrect result unless a final decision is made.

i just want to know how was yur condition when you were diagnosed were you physically fit and how are your blood counts

[Ausrine in reply to lucky98]

Hi . My blood counts were looking normal, WBC , ALC, LDH were normal, no enlarged lymphnodes or night sweats, my Richters started in my bones , I was feeling increasing bone pain, that's why my doc ordered bone marrow biopsy and CT scan.

[lucky98 in reply to Ausrine]

i dont have any pain still do youthink it may come out ritchers

[lucky98 in reply to lucky98]

there must be something unusual with you thats why dr suspected ritchers was it like your bone pain unberable

[Ausrine in reply to lucky98]

At first it wasn't , but in the end it was close to unberable. My biopsy results lacked of evidence to confirm Richters as well. Only when I had CT scan done they confirmedRichters , it was all over my body, bones, liver, spleen and so on . What was your CT scan results ?

[lucky98 in reply to Ausrine]

i had my pet scan in first week of june which showed enlarged lymphnodes but nothing on liver spleen etc. becoz of enlarged nodes i had surgical biopsy of auxillary lymphnode after surgery very surprisingly all lymphnodes suddenly gone down and my result of biopsycame out as marzinal zone lymphoma(strange result)so onco suggested second opinion sent the sample and it confirmed ritchers transformation doctor got confused between two contrasting reports so now third opinion we are waiting for third in the meanwhile dr advised me a pet scan for safer side so tomorow i have pet scan is your story also similar

[Ausrine in reply to lucky98]

When you get CT scan results ask about SUV numbers , if they are high then it can be Richters , if low then it's probably not. My SUV was 10-15 , very high

[Cllcanada Top Poster CURE Hero in reply to Ausrine]

SUV is a number used in PET scans that measures FDG tracer uptake... generally 5 is the point of reference for Richter's, higher it is possible, lower unlikely... but a biopsy is the only way to confirm...

I felt fine when I had a transformation and my LDH was high normal... so you can't go by that, but often Richter's patients have B sysptoms but not always.

Richter's, like CLL varies tremendously, something lost on many doctors... most have never seen a case of it.

Also note that fine needle biopsies can lead to a false negative result...

[lucky98 in reply to Cllcanada]

no mine was a surgical biopsy they took a big suspected node from armpit. its been 1 and half month and i am feeling alright. and one biopsy report diagnosed low grade so little hopes on may be its not ritchers tomorrow i will get a pet scan again let us see what happens but after talking to you both now i am not scared of richters transformation too. but on google when i saw survival is only 8 months i was almost broke. but i hope for good can anyone say about survival

[Cllcanada Top Poster CURE Hero in reply to lucky98]

I can't believe with a whole node they can't get a confirmed pathology of something...

Yes, the median survival is still about a year or so... but that is not everyone...

I know a number of RT patients who have been cured of RT-DLBCL type... which is considered to be 5 years... a few patients are approaching 10 years...

I'm 4 years, so far so good, so the Median is not the Message...

Here is a famous paper about this... by Stephen J Gould

people.umass.edu/biep540w/p...

[lucky98 in reply to Cllcanada]

how is rt treated first how many doses of chemo will be given

[Cllcanada Top Poster CURE Hero in reply to lucky98]

The standard treatment is 6 rounds of RCHOP once every 21 days... for diffuse large B cell lymphoma, the most common type.

It is a chemoimmunotherapy, R is rituxan, C is cyclophosphamide , H is hydroxydaunorubicin, O is Oncovin aka vincristine and P is prednisone a steroid...

There are other treatments like OFAR, EPOCH, RICE etc... variations

I could only manage 4 rounds of RCHOP , so was switch to a variant of Etoposide, Rituxan, cyclophosphamide and prednisone, for two rounds, then I had radiotherapy for 10 days... 30Gy in 10 fractions...

[lucky98 in reply to Cllcanada]

it means rchop is tough any sideeffects is it worse than fcr

[Cllcanada Top Poster CURE Hero in reply to lucky98]

... atleast for me it was tough... I don't discuss it much because many patients do fine on it, with only hair loss and some neuropathy, but that was not my situation...

I had just come off 6 months of FR, so my experiences are not typical...

[Cllcanada Top Poster CURE Hero in reply to lucky98]

Yeah..as others have said..you need to get pushy...a month for pathology is not right... it shouldn't take more than 4-5 days... you may have slipped through a crack...

A month from suspected diagnosis to treatment is good, 2-3 weeks after a pathology confirmation... the sooner the better.

~chris

[colmoore1]

For me treatment (R-CHOP) began a month after diagnosis

[Christian057]

Mine was two or three weeks after diagnosis. I did two cycles of Gemcitabine with steroids and rituximab (I think). It did some good but nothing dramatic so I'm now on Mini Leam. Just completed the first cycle and hopefully moving towards a bone marrow transplant. Does anybody have any experience of this they could pass on?

[Cllcanada Top Poster CURE Hero in reply to Christian057]

I take it your transformation was to Hodgkin's? [HL]

[Christian057]

Lucky 98 - you should stamp your feet at the hospital about this. They should be moving quicker.

[lucky98 in reply to Christian057]

but no symptoms physically fit no lymphnodes no rise in lymphnode size after biopsy one report shown sll only second report shown diffuse waiting for third opinion please suggest

[AussieNeil Partner Administrator in reply to lucky98]

Have you had a blood test recently that included blood biochemistry and if so, what was your Lactate Dehydrogenase (LD/LDH) reading? Normal range is about 100 to 230, but in many cases (not all) if you have developed Ritcher's Transformation, it will jump multiple times your normal result.

Neil

[lucky98 in reply to AussieNeil]

ldh was 275 last wednesday blood test was normal

[lucky98 in reply to lucky98]

hey can anyone tell ihc cd markers for ritchers transformation

[GratefulOne in reply to lucky98]

I was just told today 8q is a red flag for Ritchers. Yes, I have 8q. 😞

[Cllcanada Top Poster CURE Hero in reply to GratefulOne]

8q is actual c-MYC... very early on that marker and far from conclusive... NOTCH1 is more firm.

healthunlocked.com/cllsuppo...

[AussieNeil Partner Administrator in reply to lucky98]

How does that not too concerning higher LDH result compare with your previous results? A higher than normal LDH can just mean your CLL is more active - or be the result of a poorly taken/processed blood sample. I've had a 30% higher than average result when a novice phlebotomist struggled to take a blood sample and another 75% higher when the blood sample was reported as mildly haemolysed.

Neil

[Cllcanada Top Poster CURE Hero]

My LDH never increased above high normal, but my ALC increased very rapidly. The sooner you have treatment the better. A biopsy is the goldstandard for diagnosis of RT.

The markers depend on the type of transformation DLBCL, Hodgkin's or PLL, but a pathology is the best method of diagnosis...

[lucky98]

can you tell your cd markers

[Cllcanada Top Poster CURE Hero in reply to lucky98]

I never had a Flow Cytometry run... the biopsy is what is required.

[lucky98 in reply to Cllcanada]

yes in biopsy report also cd markers are there like cd10 cd20 bcl2 even i have not had flow cytometry

[Cllcanada Top Poster CURE Hero in reply to lucky98]

That is a flow cytometry...it can be run on any tissue not just blood 😄 CDs are clusters of differentiation... cell surface markers.