Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case.
With your permission, I want to share keeping your story anonymous. For anyone who wants to locate them, just contact the Facebook group. In this group, everyone identifies with their real data.
A member of this page I recommend sharing on this page these testimonies of Ricther. The idea is to help each other since there are very few cases in the world, but we are not invisible. We exist.
For everyone who has Ricther, here the group passed.
Greetings.
facebook.com/groups/1002255...
Case of J.L.W
I was diagnosed in December 2014 with Trisomy 12. I began treatment in November 2015 after egg size lymph node with BR—6 infusions. I was in remission until April of this year when numbers started barely creeping up and more swollen lymph nodes. My oncologist and I decided to have restaged to see what was going on in May and 1st of June. There was not a lot of change, but wanted PET scan. We went on 5 week trip to visit family and friends across 11 states. We came back and had PET on August 6. Most all lymph glands were a glow about 5, which meant we should do something, but most concerning was mass at valve where large a small intestines join with a 30 glow which was alarming to doctor and myself. I had had colonoscopy 9 months before. My oncologist checked me in hospital (couldn’t get quicker in outpatient) the next day for emergency colonoscopy and biopsy. It did not show colon cancer or lymphoma, so she referred me to colon surgeon.
This is where being my on advocate comes in. They said couldn’t see me for a week and said I need to be seen ASAP. They called back and said they had appointment 6 days earlier. I took it. Surgeon recommended removing valve appendix and 12 inches of colon. Again had to be advocate—said it would be 7 to 9 days for insurance approval—it was approved in less than 24 hours. (I also called insurance and explain). The surgery was scheduled for the 26th, but got it moved to 21st—I got out of hospital on day it was originally scheduled. The final pathology came back on September 4th and saw oncologist on 5th. It showed the Large B-cell lymphoma. It was recommended I have Rituxan and EPOCH 5 day continuous infusion for 3 to 6 times every 28 days, depending on PET scan after 3 treatments. I ended up having every 21 days (the recommended) since my numbers came up in that time. They first thought I was too old to tolerate the 21 days. I am 72 years old, but don’t feel that age. I walked or swam 2 or 3 times a week before this all started.
The PET showed still a small area of lymphoma plus the nodes under my arm—CLL still Tuesday morning early I have blood work and doctor appointment. The PET showed still a small area of lymphoma plus the nodes under my arm—CLL still a problem. Dr V was going to consult with Dr Awan and added venetoclax to my R-EPOCH.
I have successfully had 3 more rounds with venetoclax for 10 days each time added. The 3rd round I had neutropenia fever and returned to hospital with no infections, but received antibiotics for 2 days.
After 4 round had neutropenia fever again in hospital and no infections and again had antibiotics. They sent me home too soon and was back next day and more antibiotics and had to stay in ER for 48 hours because there were no rooms. That was a nightmare. I developed C-diff from so much antibiotics and was isolated. My numbers came up for round 5, but was isolated because of C-diff even though I no symptoms. Again neutropenia fever and another hospital stay and antibiotics. My numbers came up for round 6 and everything went ok. Home for 5 days and another neutropenia fever. This time I was in hospital for 5 days. My wbc and neutrophils were 0 for 4 days.
Finally a week after most of my numbers are close to normal range.
The first part of February I’ll be having another colonoscopy and PET scan to hopefully find lymphoma gone. I will then have 2 methotrexate infusions 2 weeks apart to protect brain from any stray cells.
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Case of J. T
I was diagnosed in May 2018 (49 year old woman) with Richters transformation from previously undiagnosed CLL. I was not sick, had no symptoms except for a growing lump on my neck. PET showed an avid FDG left neck mass and less FGD-avid lymphadenopathy above and below the diaphragm. 37% lymphocytes.
It was a complete surprise to me, as I'd had no sickness apart from the lump. My CLL was very low level. Test showed no p53 deletion.
I had a cycle of 6 R-CHOP, like many others here. I was successful and full remission achieved. I was advised then to have a stem cell transplant and after testing, found I had a sibling match.
It took me a long time to decide to have the transplant, but decided to based on advice based on the data I could find (there is not much available data which is part of the problem for us all). I had my SCT in June 2019, which took a long time to graft (we thought it might fail) but after tapering off the ciclosporin the graft was achieved. I had very mild GvHD and have now tested negative for any CLL and am in full remission.
I'm hopeful that is the cure, at least for a good few years. Of course, nothing is 100% as the doctors say. I also followed a full nutritional programme, changed my diet and took lots of exercise and I feel good now - which I put down to all these things. I am very happy to share any of this with anyone who needs it. I fully believe nutrition and exercise are a bit part of my treatment.
Happy to help further in this group if I can be of help. Thanks all!
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Case of M.M. R
I was diagnosed with CLL/SLL in October 2013 at age 49. 11q-, Zap 70 positive, unmutated. I had 3 rounds of Bendamustine/Rituxan and had to stop due to severe allergy to Benda. Had 3 rounds of R-CHOP and achieved a full remission in March 2014. CT showed signs of progression in Sept 2014 and full relapse in March 2015. I began Ibrutinib in May 2015 and began having B symptoms (fever, bone pain, fatigue, night sweats) in July 2015.
Was diagnosed with Richter’s transformation (DLBC lymphoma) in Sept 2015. I had 2 rounds of OFAR (with the Rituxan replaced by Ofatummamab) with complete remission. I had an allogenic stem cell transplant from an unrelated matched donor (10 of 10) on Jan 13, 2016. I have 100% chimerism and no evidence of disease since the transplant.
I have some minor GVHD issues but am very glad to be alive. I am very blessed.
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Case of D.D
i am at high risk for transformation to richter’s. i thought it would be useful to track my progress and to be informed on what other richter’s patients are being treated with. i am tris 12+, with unmutated ighv 4-39 (stereotypic which is high risk for richter’s transformation). i am also atm mutated, POT1, SPEN. data presented by richard furman shows that at 5 years post diagnosis 100% of patients in study group who were both unmutated ighv4-39 + notch 1 had transformed to richter’s. that has been the impetuous for early treatment in this group of patients. thus as soon as i received results of fish/mutation/deletion test results i was started on ibrutanib. (age of diagnosis 62 yrs date of diagnosis 10/11/19). the hope is that it will prevent the clone that would become the richter’s to evolve but this is just a theory and they are testing it now, i’m not in a study because i already have another type of cancer,. metatstatic thyroid cancer that i am on watch and wait for since 2012. i am on high dose synthyroid hormone to supress activity of metastatic tumors in my lungs and so far it is working for me. but the presence of that other cancer would most likely exclude me from many clinical trials. i am a patient at md anderson cancer center in houston . my leukemia doctor is zev estrov.
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Case of T.R.S
50 year old woman
In November 2017 I was diagnosed with LLC.
In April 2018 I started treating myself with Ibrutnib through a clinical trial. I had lymph nodes in six parts of my body, some more than six centimeters.
I lost a lot of weight, 45 kilos in a few months.
Six months after starting treatment with Ibrutinib between complete remission. The same day I go into complete remission, I am diagnosed with two breast tumors.
In March 2019, I had surgery to remove the tumors and do a biopsy of my mammary glands, where they detected diffuse large B-cell lymphoma. Ricther syndrome
In May I started the chemotherapy of six sessions of R-CHOP.
At the end of the treatment no lymphoma cells were found in my body. Full reference
There is a curious fact in my case. I never found lymphoma masses in my body either before or after chemotherapy. My Ricther was detected by chance. I think the Ibrutinib stopped the Ricther and made the masses not grow.
Now I am under control every three months.
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Case of E.L
E.L she was diagnosed with CLL 13 yrs ago and was watch and wait for all that time then she got sick dec 2019 and they found hodgkins lymphoma which is rare for it to transform to that but they have started her on AAVD chemo and so far her nodes have gone down she will have a new pet scan coming up In 5 weeks we will know more this is so scary
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Case of N. C
I introduce myself: my name is Nauzet and I will tell the case of my partner. Ayose was diagnosed with chronic lymphocytic leukemia in November 2018 after two months with multiple cervical adenopathies. He went to the doctor's office because of an abdominal discomfort and his doctor found these adenopathies strange. The doctor ordered blood tests that showed an increase in her lymphocytes. After this, they referred Ayose to a hematology clinic and began the process of studying the origin of these adenopathies. the studies included a biopsy of a neck ganglion, bone marrow biopsy, scanner and computerized axial tomography. Diagnosis: CCL. He spent a short period of time on "watch and wait" until he started treatment with Ibrutinib which lasted 2 months. in one of the control scanners, a thickening of the gastric mucosa was observed. Endoscopic biopsy is performed. Diagnosis: DLBCL (RICHTER TRANSFORMATION) AND AN INFECTION WITH HELICOBACTER PYLORI, in addition to several gastric ulcers. PET-CT shows 3 lesions compatible with high degree malignancy lymphoma. TREATMENT: 6 cycles of R-CHOP. RESULT: Complete metabolic response of lymphoma. LLC Reset. CURRENTLY: Without treatment. 3 months in complete remission.
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Case P.W
Hello fellow Richter's survivors and advocates. I'm relatively new to Richter's - diagnosed 2 months ago. I'm just finishing up on a my pre SCT treatments and appear to be in remission. Headed to MDA on Monday to hopefully lock in dates for my Allo transplant. So far everything is going to plan. Best wishes to all of you!!!!
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Case of F. V. S
Its good to see this page. I had never heard of RT till I was diagnosed in July of 2019. I was on my 6th year of CLL treated with Obinutuzumab for 6 months. Six months later diagnosed with RT Large B cell lymphoma.I was treated with 6 treatments of R-chop chemo and 2 pet scans later showed remission. I'm very interested in the outcome and wondering if SCT is the only treatment if there is a relapse. Wishing good health to all.
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Case of S. S
...Ver másHello all. Happy to meet the elite few in the Richter's club!My story so far:
SLL/CLL diagnosis April 2014.
Asymptomatic and on W&W till 2018.
Hola a todos. Felices de conocer a los pocos de élite en el club de Richter!
Mi historia hasta ahora:
Diagnóstico de SLL / CLL Abril 2014.
Asintomático y en W & W hasta 2018.
Diagnosticó la transformación de Richter en noviembre de 2018.
Comenzó RCHOP en diciembre de 2018.
R descontinuó inmediatamente debido a una reacción adversa.
Comenzó Ibrutinib.
CHOP descontinuó en febrero de 2019 después de la segunda ronda mientras entró en sepsis después de ambas rondas de CHOP.
Referido para el trasplante de células madre.
Se sometió a SCT en mayo de 2019.
Infección CMV en Jun / Jul 2019.
Recuperado pero rápida caída del quimerismo (riesgo de fallo del injerto).
Transfusiones de HG hasta agosto / Sep 2019, probablemente debido a la desajuste del grupo de sangre con donante.
El quimerismo aumentó (del 50 % a 80 s) en Sep / Oct manteniendo una alta dosis de ciclosporina (inmunesuppresents).
No hay señal de Richter (CT escaneo) o CLL en sangre. Nodos linfa y bazo de vuelta a la normalidad.
La médula ósea muestra un 10 % de células CLL, seis meses después del trasplante (reducido del 40 % a 30 días post trasplante, 60 % pre trasplante, y 90 % de tratamiento pre Ibrutinib).
El quimerismo aumentó al 94.8 % en diciembre de 2019 / Ene 2020.
No hay señal de GvHD actualmente. Sin hígado, corazón, intestino, pulmones o cualquier daño en el tejido.
2nd Update on Possible Richters Transformation
Clinical Utility of Chromosomal Microarray in Richter's Transformation 
Possible richters transformation?
