I am getting ready for my 6th infusion, all my bloodwork is practically normal. I am Trisomy 12 with notch 1, NRAS, ATM and MITF. Before I started treatment my wbc had dropped on its own from 18,000 to 11,000. And my lymph nodes in my neck and armpits had started to reduce in size. They started me on treatment due to my abdominal lymph nodes(too numerous to count) causing pain. Never really went away throughout my treatment but all my bloodwork seemed almost normalize. But my pain is still there. I am scheduled for a pet scan next week. I had a appointment with nurse practitioner she said it’s possible the treatment isn’t working. Anyone else have anything similar? Other than the pain, I really feel pretty good, no symptoms or side affects from the treatment. If there are active abdominal lymph nodes shouldn’t something show on my bloodwork? I am sure I forgot something (I always do). Lol.
Venclexta & Obinutuzumab not working? - CLL Support
Venclexta & Obinutuzumab not working?
Enlarged internal nodes don't always reflect in bloodwork. CT is usually used to check for changes in *size*. Some people here have taken "longer than usual" for the CLL to clear out of their system, and sometimes nodes never do change much.
I am guessing a PET would be used to see if nodes are metabolically active (indicating some disease process is still going on, that the CLL is not gone yet) or not. Checking on those internal nodes to verify exactly what is going on, why you are still having pain, is a good call. I hope it's simply a case of "you need to be on the medication a bit longer."
You don't mention how long you have been in treatment, if it's been fewer than 2 years that's still pretty normal. If you've only been on these meds 6 months, it's not the end of the "usual treatment period" and unless some other things are not changing, you simply may be taking "longer than average" to clear the disease, The Trisomy/NOTCH-1 combo is one that it's better to treat longer to make sure it's stamped down IMO. A few people here have commented it took them longer than others have to get rid of their CLL. Unless your nodes are getting larger on treatment, it's still working. If your internal nodes are still changing/shrinking, and happen to be in places affecting nerves, that may be one reason you are still having internal pain.
Unfortunately an SLL presentation is a subset of our rare CLL, so there's not a lot of data to say with certainty "this is what is happening, this is what one should do".
Thank you for your insight. I started treatment the beginning of September, January will be my final infusion.
OK, so you are early into this process. New recommendations for treatment are now along the "guided by how the disease reacts, how difficult it is to reach uMRD" instead of "everyone gets treatment for X amount of time." (See recent post by MovingForward4423 link below). Monitoring your node activity (especially since they are still bothering you) is a good thing. Sorry to hear you are still in pain, though. Hopefully you pass through this stage quickly.
healthunlocked.com/cllsuppo...
Not sure how uMRD testing will be applied in an SLL presentation like yours, but IMO having some PET data to see if nodes are still metabolically active will be useful. If the blood counts are dropping but the disease is still hiding in nodes, assessment of node size and activity may be used instead of blood measurement I think. In addition to how RBC, neuts, etc. are faring.
I think uMRD testing is still just bone marrow and peripheral blood. I have SLL and the disease is quite sticky in the bone marrow so I wonder if it is a good proxy.
I would offer up a lymph node to my doctor but I doubt they would take it. One less annoyance in my neck when SLL returns.
Unfortunately, I doubt many doctors are doing MRD guided treatment yet. Also, those on trials with fixed duration are stuck with it.
Hopefully more will start with the recent ASH recommendations to do so!
I asked for ClonoSeq testing from my Onco. She said, I dont even know where to order that from.Example of an issue one can have by seeing a hemo/onco with only a handful off CLL patients.
My understanding is that it is now available through Labcorp:
oncology.labcorp.com/sites/...
as well as the company directly (here is link for docs):
Thank you for that explanation as I needed to hear it as well. Never ending spleen discomfort @ 9 months into O and V.Its a bit spooky since spleen issues were the trigger for treatment.
I hope they eventually resolve for you! It's tough being an outlier compared to what others are generally experiencing. Hang in there!
Corgidad,
The statement " it’s possible the treatment isn’t working", by default presents the contrasting statement " it’s possible that's how the treatment is working". Consider inquiring with the lead CLL specialist rather than the nurse practitioner for what the specific measure of efficacy should be.
It seems inappropriate for an associate to present a efficacy measurement statement based in perspective doubt, especially if they are stating it as an opinion and not qualifying a medically defined observation.
There were people in my trial that still had enlarged lymph nodes beyond the observation expectations during obinutuzumab infusions, yet they were eventually reduced in size enough that they were able to move on to Venclexta. Some that I know of even reached uMrd with Venclexta.
This does not mean that you will respond the same as anyone one else, as we are individual and obviously have individual risk profiles.
A CLL specialist that is experienced with the treatment and has understanding of the response data is best qualified to answer your question.
Stay away from doubt and pursue good measure. You are in it to win it! even if it means double overtime with 3 seconds on the clock.
JM
You are right, and I do have an amazing cll/all specialist. She and my regular oncologist communicate regularly. So, after my PET scan we will see what the two of them think. It was just bad timing that my regular Doc was on vacation at the time of my last appointment. It’s just crazy tht aside from the slight increase in pain, I feel pretty good…🤷🏻♂️
It amazes me how many underlings offer opinions on our conditions.
Often they mean well, yet, these occurrences are still part of the experience perseverance building aspect of being stricken with chronic illness.
God bless us all!
Yes bless us all even those who should keep their mouths shut.
Yes, even those.😆
Does (or will) your treatment also include Venetoclax?
New SLL diagnosis 
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
Is there anything that helps you with inflamed lymph nodes in the neck and abdomen? 
CT scan or not 
