I was originally diagnosed with SLL back in June 2024. I have all the bad/high risk markers to include 17p/TP53 and IGHV unmutated. I had very large lymph nodes throughout my neck (10cm) and my chest (6cm) prior to starting Calquence in Nov 2024. At first Calquence seemed to be working great as my nodes shrank within the first couple of weeks. However, I’ve been on Calquence for the past 3.5 months and noticed my lymph nodes in my neck are getting enlarged again. I also have a little tightness in my chest with a bad cough. I know that isn’t normal so of course my mind goes to the worst case scenario of being RT. If it’s not RT, then I’d be really surprised if I’ve become resistant to Calquence in less than 4 months. I guess that possible too? I don’t think it’s an infection or sickness but I really dont know that either. Has anyone else experienced anything similar?
I’m just trying to prepare myself for this scenario and have a few questions about RT: what would be the best method for testing for RT? PET scan, another biopsy? I currently have a CLL specialist that I get advice from via video chat (paid for by the VA) and see a local oncologist for most of my testing. Are there RT specialists that I should reach out to or should I continue seeing a CLL specialist to handle RT (if it is even that)? If it is RT, what should I expect for treatment options considering my bad markers of 17p/TP53 and unmutated? I was always told chemo wouldn’t work for me because of those bad markers?
I guess I’m just looking for some answers on what should my next step be? I’m waiting to hear back from my local oncologist to be evaluated and probably have some blood tests done. Is there a particular test or scan I should be getting done to see what is going on? I don’t fully trust my oncologists because they seem to put it back in my hands when I’m really seeking their advice. Fwiw, I’m only 42 years old with two younger kids. Thanks for any advice or input you can provide me.
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Lindy0311
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For Richters you would need a pet scan and if that shows increased cell activity, you would need a lymph node biopsy. Calquence stopped working for me after 9 months, there was concern for Richters but luckily just aggressive cll in my case. Richters is traditionally treated with RChop or R Epoch but there are lots of novel approaches available like Car T, combos with immunotherapy and btk inhibitors, epcoritimab has shown a lot of promise. Your CLL specialist should be able to continue your treatment but when I asked my specialist if indeed I did have richters if I should get a second opinion at MD Anderson, he immediately said absolutely. He might be biased though because he did his fellowship at MD Anderson under Dr. Wierda. Good luck, hope it’s nothing serious, keep us updated.
Did you get a full excision biopsy or a needle core biopsy? I had a full excision on a neck lymph node node that gave me my diagnosis of SLL. Not looking forward to going through that again but I understand if it’s needed. Just wondering if a core biopsy would work or not? And I’ve never had a PET scan before, however I’ve had many CT scans over the past year and I’m always worried about radiation exposure causing secondary cancers. I’ve had at least 5 Ct scans within the past year (3 on chest, 1 on neck and 1 on pelvis. Last one was Nov 2024. Am I over thinking about too much radiation exposure causing future problems?
What did you take after Calquence stopped working for you and how has it been? Thanks again for your input!
Full excision lymph node under collar bone. I don’t have sll, so only had 2 ct scans for my CLL, one at diagnosis and one for suspicious nodes in my neck. Had pet scan to check for Richters and another pet scan at end of treatment, mainly because I have ckd and the contrast dye is not recommended because of that. I changed to Venetoclax and Rituximab but my one bad marker is being unmutated though I have a very unusual kidney involvement that mimics multiple myeloma. Pirtobrutinib could be an option for you but I believe even Venetoclax would work for you. I found Venetoclax easier than Calquence after the initial ramp up.
Have you noticed any dramatic change in how well you feel lately. It's unlikely you have RT if you feel normal. An investigation into suspected Richter's Transformation is best done by a CLL specialist, as they would have the most experience.
Do you have any recent blood tests with a blood biochemicals panel including LD/LDH (Lactate Dehydrogenase)? That can be several times your baseline count with RT.
It's possible that your CLL included a clone that had resistance to covalent bonding BTKis. If so, as the acalabrutinib cleared out the CLL clone without resistance, the resistant sub-clone became dominant. If so acalabrutinib, ibrutinib and zanubrutinib won't work, but a non covalent bonding BTKi such as pirtobrutinib will work. Most likely, your specialist will switch you to a BCL-2 targeted therapy (venetoclax). These are all targeted therapies that work on 17p/TP53 CLL. It's the older chemoimmunotherapy treatments like BR and FCR that don't work all that well with those markers.
If your specialist thinks you have RT, a PET scan is done to select a very active node for a biopsy for confirmation. That's best done by a CLL centre of excellence.
As you live in the USA, you are able to arrange for one free video appointment with a recognised CLL specialist through the CLL Society's Expert Access program cllsociety.org/programs-and...
I think I feel mostly normal other that my cough has progressively gotten worse (which they still dont know the cause of that after many tests). I’ve also been having some pain under my left middle rib cage area over the past 2-3 weeks so not sure if my spleen is enlarged or what. I had this pain before prior to treatment. The only other thing I’ve noticed is I’m a bit more exhausted than before. I never really experienced the dreaded fatigue that I hear people talking about often but that’s kind of what I’m feeling the past few days. Could also just be from being stressed out of the unknown.
My most recent was LDH test was on Feb 6th, 2025 and it showed a level of 179 which I believe is in the normal range. Once I see my oncologist next week I’ll have more blood tests ran to compare to.
Where would I find this clone that you speak of? Would that be on Flow Cytometry? I’d imagine my specialist should have been able to see that from the tests I had done prior or is it a different specialized test to get that info?
I was hoping to save Venteclax for getting myself to a deeper remission and possibly getting CAR-T or SCT. Now I feel like I’m exhausting my future options pretty quickly which is scary for only being 42 years old. Was hoping to get at least another 10 years before venturing that idea.
Being age 42 provides you with the major advantage of having youth on your side, whether it's RT or just aggressive CLL. You have an excellent chance at a cure with a stem cell transplant.
Your LDH is nicely normal, which is encouraging.
You'd need a research center for sub-clone testing, but FISH testing might turn up something. It's a blunt tool for this, because it doesn't look into the genetic differences of the CLL cells examined.
Needle biopsies for RT evaluation have the risk of missing the transformed cells, which is why a pathology examination of an excised very active node is recommended.
Lindy0311, I know how you're feeling as I just went through a similar scenario over the past few months although I was still treatment naive. My specialist is at Mayo Rochester and based on a PET I had in December for concerning asymmetric LN growth (max SUV of 6.4) she did an eval for RT.
PET SUV> 5 is concerning for aggressive SLL and SUV >10 requires RT investigation.
Because I had an SUV of 6.4 + asymmetric node growth (which is unsual) my specialist ordered a CT to see if I showed growth from the December PET (I did show growth) and then ordered a core biopsy of my hottest node which was a 5x6cm peracaval node near my right kidney/abdominal aorta. Thankfully the biopsy came back with just SLL, but with multiple proliferation sites.
I started a Pirto+Ven trial 2+weeks ago.
One thing my specialist told me during the saga was that most RT patients usually come in pretty sick and I felt completely normal. I also had a LDH of 192 so she was confident it wasn't RT, but she had to check because of the concerning PET results and clinical presentation.
I hope you get this checked out quickly and like me...you find out it's just our CLL acting up.
Thanks BigfootT, much appreciated! I’m glad yours turned out negative for RT. I have an appointment this Weds so hopefully I’ll have updated blood tests and some additional tests scheduled to figure this all out. I just read your bio and see you have Dr Roeker! I just listened to a podcast that someone recently posted and she definitely sounds competent and knows what shes talking about! You’re in great hands!
Dr. Roeker ROCKS! I know many of us say this about our specialist, but she's the best I could've ever hoped for. Extremely knowledgeable with an outstanding clinical demeanor. She spends a lot of time with me and is always happy to answer my questions. My wife said after our first appointment with her, "She's the sweetest doctor I've ever met".
I know there are many great experts in this CLL field, but I feel like finding her was hitting the jackpot. With luck she and I are just starting a long, long Dr/patient relationship.
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