After diagnosed with CLL, unmutated, Trisomie 12, cd38 neg, Zap 70 30%, I received FCR 6 cycles.
Afterwards 9 years therapy free in 10/2022 got a DLBCL and was treated with R CHOP 14 6 times. Suspicion of Richters because of CLL. But clonal checks in special LAB showed no relationship with CLL and PET CT showed complete eradication of DLBCL.
MRD in 3/2023 was 1%.
After a red cell aplasy early this year with HB dropping to 8,5 I got IgG Octagam every three month and all blood counts are green with HB of around 13,0 and 13,5.
Early this week another MRD testing showed, much to my surprise again 1%, means no movement since 3/2023. I am satisfied.
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seoul1949
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Thank you Jm954. Reading your story is little frightening to me. You have gone through so many therapies... SCT seems always hard and I sincerely wish you a much better time for the next 10 or more years. By than, new strong options will be available.
I am lucky, as my Doc is Prof Hallek and his team in Uni Clinic Cologne.
The Korean capital in your name and your German residence reminded me of a German Village (독일마을) I visited in South Korea a decade ago…
“The German Village was built for Korean residents who returned from living in Germany. Many Koreans lived in Germany where they earned foreign currency during the modernization of Korea in the 1960s. The area is now a unique tourism spot related to German culture. In 2001, the areas of Mulgeon-ri, Samdong-myeon, Namhae-gun, where the Windbreak Forest (Natural Monument) is located, underwent a development worth 3 billion won ($2 million USD) implemented by Namhae-gun and eventually formed a village spanning over 99,174 ㎡.
Korean residents in Germany directly imported materials from Germany to build German-style houses. Some villagers who make frequent visits to Germany operate their vacant house as a tourist guesthouse. Attractions nearby are the Windbreak Forest and the Mulmi Coastal Road, one of the most beautiful coastal drives in Korea.“
Random for me to mention this but it was an unexpected surprise when I was over there. It is for tourists but there was a little museum there too. I think thousands of Korean nurses went to West Germany during this time.
Dried Seaweed is also a speciality in Korea when preparing kim-pap 김밥. You seems to have an excellent combination! I guess you are male from US?
Helping to solve the puzzle I will explain: I am married to a Korean wife for33 years. During my business visits in 1988 we met in Seoul. She is a Seoul 터배끼!
Therefore although knowing rudimentary Korean I always have a Korean dictionary not to get stuck when over there.
I have been knowing many Koreans in Germany and also some, who have build or purchased houses in Namhae. Mostly German/Korean couples when pensioners .
But, although I travelled more than 50 times to 대한민국 I did not visit Namhae Villige. I have seen pictures and videos from residents. I always hesitate to plant Germany in Foreign countries :-). My favourite areas are Kangwon-do and the Sorrak-san mountains or the area around Chunchon, but I travelled many times through Korea, sometimes on my own. I also was in Kyeongsannam-do but not in Namhae.
Just now, my wife went for a short trip to Incheon/Seoul, but I this time preferred to stay in Switzerland, where partly living.
Very interesting to talk to somebody with knowledge about Korea.
In the Ruhr District where I live, in the early 1960s Chancellor Erhard gave President Park, Chun-hui the financial help, that approx. 25.000 Korean coal-miners and nurses could work in Germany. Parts of the earnings went to the Korean Government, very poor in those days.
Afterwards they all could get permanent visa or German passports. My wife and me know many of them.
I thing that helps to understand the combination SEOUL and my location:-).
Thanks for satisfying my curiosity! I’ve traveled there only 3 times but always enjoyed it. Hope to get back someday in the future. Last time was in 2018 for the Olympics. I had a big bump under my chin that wouldn’t go away. A couple weeks later it turned out I had SLL/CLL.
I never learned Korean. All my friends I hung out with were good at English so I could be lazy about it.
Hoping to make it to Switzerland sometime soon. I have a cousin who works for Nestle and lives in Lausanne. I’ve been hunting for a new job so it is on the back burner for now. Maybe if I land one soon I can squeeze in a trip right before the start date.
Wishing you good luck for your future CLL Journey and your travel wished. Switzerland is really worth to see, especially the Lucerne area, where I partly live. You did not answer my curiosity, whether you are male and from US.
👍 38 male a short drive from DC in USA. I’ll be sure to go there before he moves home. My aunt and uncle are getting up there so he may need to move back in a few years.
Thank you, Do not miss the opportunity visiting one of the nicest country in the world in my opinion. By the way, working in CH is lucrative as they pay very high salaries. I know, standard of living is high and may be expensive, but in all 25% cheaper than Germany.
There are two different kinds of Richters according to Dr Wierda. one which evolves from a CLL clone and another one where there was a clone which was not connected to CLL which is easier to treat. It looks like you had an independent clone which they could treat well.
Gene-expression profiling has identified subgroups of DLBCL (activated B-cell–like [ABC], germinal-center B-cell–like [GCB], and unclassified) according to cell of origin that are associated with a differential response to chemotherapy and targeted agents.
We identified four prominent genetic subtypes in DLBCL, termed MCD (based on the co-occurrence of MYD88L265P and CD79B mutations), BN2 (based on BCL6 fusions and NOTCH2 mutations), N1 (based on NOTCH1 mutations), and EZB (based on EZH2 mutations and BCL2 translocations). Genetic aberrations in multiple genes distinguished each genetic subtype from other DLBCLs. These subtypes differed phenotypically, as judged by differences in gene-expression signatures and responses to immunochemotherapy, with favorable survival in the BN2 and EZB subtypes and inferior outcomes in the MCD and N1 subtypes. Analysis of genetic pathways suggested that MCD and BN2 DLBCLs rely on “chronic active” B-cell receptor signaling that is amenable to therapeutic inhibition.
That is true. After I finished R CHOP 14 in 1/2023 the doctors explained to me, this would be RT. It was little devastating for me. As my blood counts were all normal, I started to read all I could about RT. I found an article from US where everything was explained. Resume, 80% of patients have a clonal relationship between DLBCL und CLL, that ends in bad prognosis. Whereas by 20% of patients it is de novo, means no connection, the prognosis is much better.
My blood from early biopsy with DLBCL and from my CLL was tested in special Lab. Result, no relationship. Since R Chop my CLL is nearly gone and blood is normal.
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V + O for R/R CLL post FCR
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Five-year results for the iFCG regimen: first-line treatment of CLL patients with mutated IGHV and without del(17p)/TP53 mutation
Late breaking CLL abstract at ASH 2017 - VR vs BR
