I was admitted into the hospital today for 5 days of DA EPOCH R w Venetoclax for large diffuse large b cell lymphoma, Richter’s Transformation, of my CLL. Still shocked by the diagnosis as I continue to feel pretty good despite the swollen spleen, enlarging lymph modes and fatigue.
It’s been a long day waiting on blood work and doctor’s orders, but my first 24 hour treatment was started at 8:05 pm. I was given premeds for nausea and 100 mgs of prednisone prior which is doing its job. So far no issues. However, I am wide awake and writing this at 1:30 am EST - US. But that’s ok if the only side effect. Venetoclax will be added around day 20 with a quick ramp up but I’m not sure of the duration.
I know this treatment will present challenges as we progress through the cycles, but the doctor thinks because I am relatively healthy other than CLL, I should do well with no major issues. The goal is to get me to CAR-T, but not sure when/if that is supposed to happen.
I’ll update along the way. Please feel free to ask about the treatment or my journey. I hope I can be of help to anyone facing the possibility of Richter’s.
ReneeSusan
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ReneeSusan
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I just joined this group and feel so grateful to hear other peoples journeys as I’m about to start treatment and I don’t know anyone with CLL to share with . I’d be interested to hear when you were diagnosed and what happened next as it seems to me that everyone has a different story. Hope the treatment works for you and stay positive
I was diagnosed in 2008 at 54, routine blood work by GP came back three times with elevated wbc without infection. She referred me to a hematologist who did more bloodwork and a bone marrow biopsy confirmed slow growing CLL. The only negative marker at that time was unmutated. I was told it could be 20 years before I needed treatment so I never gave it a second thought and just lived my life until I started having sleep apnea, something I never had prior. After 2 sleep studies and visits to 3 ENT docs, they found an SLL mass in my nasopharynx which was removed and biopsied in 2011. I started Bendamustine w Rituxan Dec 2011-May 2012. Rituxan maintenance for 14 months, relapsed in 2014. B& R again for 6 more cycles 2014-2015. Relapsed in 2017, offered ibrutinib, but I chose venetoclax 2017-2018 had to discontinue due to lots of gastric side effects, but I was in a short remission. Relapsed in 2019 w TP53 mutation. Treated with calquence through August 2023. Relapsed in 2023 w 17 p deletion, notch 1 and 14q and a secondary TP53 mutation, lucky me. Went on pirtobrutinib in November 2023. Richter’s suspected in May and diagnosed June 2024 after sudden appearance of large neck, cervical abdominal lymph nodes, swollen spleen, night swears, weight loss, loss of appetite. Richter’s was diagnosed by core biopsy of node and pet scan May/June.
That is the journey that led me here. In spite of all that, I worked full time while caring for my spouse who had 3 strokes in 2007 the year before I was diagnosed. I continue to live a normal life 16 years later and on the days I feel poorly I rest and do self care. I am fortunate to have a small supportive family and my faith in God that has helped me get through all this.
Please remember everyone’s CLL journey is different and a lot factors make it so. I don’t have the clinical knowledge that others do in this group which you will greatly benefit from, as I did, but I hope sharing my story helps in some way,
That’s quite a journey you’re on, thank you so much for sharing. I draw lots of hope from the fact that you are carrying on “as normal” despite all this treatment. You’re clearly not bedridden and if you’re not feeling good you know to rest up. I was diagnosed at the same age as you and had no symptoms. Just elevated WBC. Everyone has a different story but the good thing is people seem to be living their lives with this condition. There seems to be a whole array of new drug combinations which give us hope going forward . I guess we need to put our faith in the medics. I was going to cancel my new puppy when I got my last set of results and have decided to go ahead and collect the puppy after reading your story. Life goes on. Let’s continue to make the most of every good day. Thank you
So happy for you. A puppy will add joy and excitement and comfort! I have a 10 year old Colton, little white fluffy thing that still acts like he’s a pup, But when I’m not well he never leaves my side and loves his cuddles.
How are you entertaining yourself during these hospital stays? I always try to plan something even though there are a lot of interruptions! Hopefully the treatment will continue to be easier than expected
Wishing for good results! I just read your previous posts, that is quite a roller coaster ride you have been on in the last weeks. Good luck, hopefully Car-T will bring you a long remission.
Yes hoping it will. It would be nice to be off meds for awhile and experience remission, since I have not had that luxury gor more than a few months twice.
Wishing you all the best with your treatment Renee, I hope you get good results and move on to CAR-T. I appreciate you sharing your experiences - I think many of us worry about RT and it’s good to know something about the treatment, should we need it. Thank you 😊
Had a major hick up yesterday. The beginning of an anaphylaxis reaction. Chemo stopped. Rapid response team called and in my room in 2 minutes. Got IV benedryl, epinephrine, Pepcid. Things resolved pretty quick but the lymph nodes in my neck enlarged so they ordered an mri stat but still waiting. In the evening had another strange reaction. The nurse flushed my port and I immediate got chest pain, rapid heart beat and dizziness. Rapid response team came again with crash cart. Have to say I was a little overwhelmed at that point as that never happened before in the 13 years I have the port. They did ekg and chest X-ray. Ekg normal, BP was high. Still waiting on x- ray results. Then around 2 am I woke up with excruciating pain pain in my spine, neck with body aches Ugh! Finally called nurse at 3 am and they gave me Tylenol and tramadol. So a very eventful day and I am not sure how this will effect my treatment going forward. Still have to have 1 more new chemo but waiting on doc because all on hold.
Oh that’s scary for you ReneeSusan especially when you experience totally new, extreme symptoms. I really hope it doesn’t affect the progress of your treatment. It does sound like you have a really good medical team around you which is reassuring.
This must be so hard for you but please know our thoughts and hugs are with you. Let’s hope eventful subsides. With this condition boring is always best!
Thank you I feel the positive thoughts and prayers from everyone! People all over world sending them, I feel blessed. I know this will pass and looking forward to boring again!
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