After CLL diagnosed in 2013, unmutated, Trisomie 12, CD 38 neg., started FCR 6 cycles in Uni Clinic Cologne (Prof Hallek) up to 4/2014. MRD neg and CR.
Then 9 years without therapy living well, no side effects.
Now, in Oct 2023 the CLL quickly turned back with RT and tp 53, as well as DLBCL near stomach. LDH was around 1.600!!
Since Nov 23 6 cycles of R-CHOP and this week Pet-CT result was, all of lymphoma disappearance and blood work coming to normal. Therefore Prof explained me, the possibility of lymphoma coming back by RT is always there, to make few weeks rest and then going for a CAR T-cell therapy. If successful the CLL would also be eliminated.
R-CHOP was nearly without side effects, but after 5th cycle I got suddenly a hearing loss of my right ear. Experts don't know, whether there is a connection with Chemo. Could be stress or neurotoxicity. Problem is, it came with swindle and moving was bit problematic. But, day by day is now going better. Doing sport in my home studio (bicycle, muscle training) nearly every day and sauna at least twice a week. Walking outside whenever possible.
Written by
seoul1949
To view profiles and participate in discussions please or .
After I experienced stomach pain mid oct eventually went to clinic and they did colonoscopy and endoscopy. Finding something and then Pet CT and biopsy. Result RT.
Then cologne clinic and immediately started R-CHOP. After two rounds a staging CT showed significant decrease of lymphoma and nearly all small lymph notes gone.
I hope now, with CAR T CELL I can be released of all stuff. But still it is an adventure.
Wishing you continued success with the latest treatments. I have the same markers as you and know I am at increased risk of RT. It is always great to hear about successful results. Motivates me to continue to exercise and stay strong. CAR T is getting better and better. Hopeful you will be rid of this.
Good morning Seoul 1949. Had CHOP chemo on 2015. Can’t remember any significant long-term results from that. Seemed to have put the CLL in remission at that time. But then on a steady diet of ibrutinib for the next four years. In 2019 I began and finished four cycles of ABVD, topped-off at the end by a month of local radiation which targeted especially a lymphoma that was growing on my spine. Seems like the CLL had evolved into Non-Hodgkin’s Lymphoma. Never told concretely but I believe that there was Richters Transition happening. All this said, everything seems to have been thrown into remission right now.
After effects of all of this ? Certainly feel that the latest chemotherapy, the ABVD, as well as the radiation has led to neuropathy in my feet which are always cold, numb. My sense of balance has also been affected to the extent that I no longer feel it wise to ski. Moderate heart disease which I never had before has also been a side effect. My medical team in whom l place considerable confidence has also admitted that these side effects are probably a product of the last session of chemotherapy and radiation.
Bear in mind here as well that I have recently turned 80 years old. First diagnosed with CLL in 2002.
Out-Patient, the Odette Cancer Center, Sunnybrook Hospital in Toronto Ontario.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
chronic coughing and scaring lesion on lungs of CLL patients
Feeling really lost and scared.
Quite the CLL journey 
Unexpected death
Richter's Transformation: standardized therapy or clinical trial
