I had chemo (FC and 2 rituximab) in 2009. After 3 years remission the CLL transformed into Richters Syndrome in 2012. Had CHOP and entered into a trial (Ofatamumab). CT scan shows Richters appears to have gone and the bone marrow aspirate shows I have partial remission of CLL.
Anyone else out there with Richters Transformation?
Anyone else had Ofatumumab?
Admin: Welcome norahmaria! I've corrected your age (most important!) and take the opportunity to format your post.
Welcome norahmarie. Delighted to hear of your positive progress. Our friend ChrisCanada is the ideal person to respond to this for you.
Newdawn
Thank you x
How do I find ChrisCanada ? Sorry new to this !
Oh I'm sure he'll respond Norah, not sure if it's sleep time in his neck of the woods at the moment. Good to have you join us though and I'm sure others will post if they can help.
Newdawn
Thanks
Hi Norah...
Like you I had a Richter's in 2012, a month after treatment for CLL with FR... the shortest remission in history... 
Do you know your type of Richter's? The most common is diffuse large B cell lymphoma. DLBCL.
I had 4 rounds of RCHOP, then after the forth round, I was switched, from vincristine and doxorubicin to etoposide, due to nervous system damage and heart toxicity... throughout this event, I was also dealing with shingles of the face....
The DLBCL, also infiltrated my spinal vertebrae, and I had 30 Gray of radiotherapy in early 2013.
A few weeks ago, a CTscan, showed no signs of DLBCL... it is likely hiding ... but no sign IS good news...in relative terms.
Due to age and being refractory to fludarabine allogenic transplant is not possible. Ofatumumab is not approved for use in Canada, so can't comment, but it is much like rituxan, probably a bit better ...
I have been a 16 year CLL patient in Canada, if I can be of help please let me know. I correspond with a number of RT patients...
~chris
Just realised ive said im older than I am lol ! I was 45 when diagnosed with cll in 2005 !
Hi chris, thank you for your reply. Sorry to hear youve had so many problems with your treatment. Great news about your recent scan resukts. Fingers crossed for you. I didnt really have any problems withe FC and rituximab in 2009 other than neutrope ia and anaemia resulti g in many hospital admissions and blood transfusions. I was on watch a d wait for 4 years prior my treatment and was not really sympto atic until just before I started chemo when mt wbc shot up and my rbc went down. In july 2012 all my lymph glands became e larged virtually over ight and a lymph node biopsy revea,ed richters transforrmation. I was started on chop immediatley and e tered I to a clinical trial of ofatamu ab. Its a new trial and I believe I was one of only 35 people here in the uk on it so I was lucky. The chemo was awful but ive tolerated the ofat well. I fi ished the 12 mo th maintaneance period in november last year and, fingers crossed a d to6ch wood, I seem to be doing ok so far. Obviously the cll will come back gradually but im hoping the drug will hold off the richters for a whike longer and give me some decent remission. Thank you for getting back to me. Keep in touch . Good luck.
Ps. I dont know what type of richters I have but will be asking at my next consultation in 3 weeks time !
I think this is the trial run by Dr Anna Schuh... just in the event others are interested...
cancerresearchuk.org/cancer...
Yes chris, this is the trial. I am under the queen elizabeth hospital in birmingham
You are very lucky, the U.K. is the only place this trial is running and it is the only trial in the world specifically for Richter's patients... 
Im so sorry to hear ofat isnt abailable in canada, hopefully if it proves to be effective it will be soon. The drug is very new and obviously its too soon to see any results. My consultsnt is pleased with my response so far, so like yourself, its good news at the moment but of course the worry of it returning is always there. Just for info , I had 6 I fusions of ofatumumab at the same time as chop, then continued for a further 12 months with ofat e ery 2 mpntjs with no side effects at all. I hope you conti ue to stay richters free. Kerp positive.
Ofatumumab was FDA approved in 2009 for fludarabine and Campath refractory CLL. It is moving through the approval and funding process in Canada currently, used in combination with chlorambucil, for patients who are unfit for other treatments...
It was granted full approval in the U.S. recently combined with chlorambucil.
medscape.com/viewarticle/82...
I hope it gets approval in canada very soon. I didnt have refractory FCR and had partial remission (5%) .. in terms of the cll, my counts were fine, it was only because it transformed into richters that I needed treatment. I was told that chop woukd have some added benefits in knocking back the cll but I wasnt given it for this , purely for the richters. I had zero neuts and was in hospital with neutropenis /infections 7 times in 5 months. I tloerated the chop but had the last two cycles reduced by 50 % as my neuts werent recovering. I believe there was only two other people on ofat at the time and I heard they were taken off it due to side effects so I think they are quite I terested in me !
*neutropenia not neutrpenis lol !
I had ofatumumab on its own ( with chop ).
Just re read my message, just to be clear, I had 3 years remission following FCR in 2009. The richters transformation was diagnosed in 2012. Symptoms included drenching sweats during the day and layer at night, terrible itching all over my body, very enlarged, painful lymph nodes in my neck, head and underarms. Did you experince this symptoms ?
No my RT was denovo, extra nodal... new, outside the lymph system... just a lump developed very rapidly on my waist... felt fine... only sign rapidly rising absolute lymphocyte count (ALC), my LDH was near normal... much like a sarcoma.
I had a biopsy to confirm diffuse large B cell...
...shows how different these things can be, we are on opposite ends of the Richter's continuum...
Yes very different. To be honest altho ive researched a lot about cll I couldnt bring myself to look I to or ask questions about richters. I decided to live in ignorance on this one. All the very best. If you want any info on the trial I can send details.
Fatigue
what happens after treatment of CLL ?
Ibrutinib as a monotherapy
Richters Transformation
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