My brother started Venetoclax 2 weeks ago. He started with a swelling supraclavicular lymph node, and an pelvis node. The first week, almost with 20 mg dose, the lymph node in the supraclavicular start to be much smaller. Then the doctors check his tests labs this Monday, and there are ok, but he has neutropenia. He take the next dose escalation of venetoclax 50 mg, and also 3 shots of Neupogen. He had fever for 2 days, and 1 day with muscular pain, and today he has no Fever and no muscular pain, but feel with no too much energy. The node spracavicular became smaller, but he has another nodes in axilary and pelvis.
He is 17p tp53.
My question is on Monday the lab results are ok, but I try to undestand why still this nodes inflamate. Usually all nodes disappear totally in the next doses, 100, 200, 400 mg?
He will have the next lab test on Monday, but I’m affraid and sad if he has no objetive response to venetoclax. I can’t understand because with 20 mg he respond very well. It’s hard to understand because one node almost dessapear and the others not. It will be about a leucothitosys created by Neupogen?
Can you tell me please your node reduction experiences, and the time, using venetoclax monotherapy?
At the start of the venetoclax treatment the doctors said that may be the could add Rituximab.
Thank you so much ♥️
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Cgr2018
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I understand your concern and wish we had exact data to give you.
But from my experience and from listening to many other patients that started Venetoclax, the biggest unknown is when the venetoclax will kill most of the CLL cells in the blood.
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You probably are aware that the doctors are monitoring your brother to detect TLS (Tumor Lysis Syndrome) that can happen at any of the dose increases, but most likely at 20 or 50 mg. Once the ALC and WBC drop quickly, then for some of us the nodes shrink quickly and for others it takes weeks beyond reaching the full 400 mg dose.
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So, please be calm and be assured that the improvements will come, but it does follow different schedules for each individual person. We just don't know for your brother. Please talk to him and ask questions like this of his doctors, if you are permitted to do that.
Thank you, Len, indeed. The problem is that I couldn’t go with my brother to the doctor appointments because the Corona Virus rules in the hospitals in Spain. He just go by himself and talk with the doctor.
On Monday, as I told said the blood results are ok, but the defenses are low, and this is the reason because he had this week, 3 days of Neupogen.
I was very happy about the results last Monday with Venetoclax, but as I said there are nodes bigger than normal size in his pelvis and axilary. Because when he started the treatment he just have 2 nodes, one supraclavicular (very reduced today, and 1 in pelvis).
And this is the reason why I asking you about the experiences with Venetoclax and the time to reduction all nodes. I’m sorry if I asked for your experiences and knowledge.
I've now been on Venetoclax for nearly 3 years now. From my experience, I found a reduction in my lymph nodes about a month after finishing ramp up to 400mg per day.
Hope this helps. Top tip - drink plenty of fluids during ramp up.
Ask if you can participate in your brother's appointment on speaker phone or face time. Some are doing that because they are not allowed at appointments because of Coronavirus.
Hi. I have had CLL for 13 years. I used every treatment available. The best include rituximab and Venetoclax. I took Venetoclax for two years and am now in full remission. I cycle two hours a day every other day. Be patient. Trust your doctors. Try to enjoy your days or at least find peace. Hopefully your brother will get better and better over time even if the short term feels incredibly tough. Again Venetoclax and rituximab are amazing drugs.
I was in a clinical trial for frontline treatment of CLL with obinutuzumab plus venetoclax where node size was measured by CT scan at given intervals across a variety of patient subsets.
Through limited conversation with other patients, the general perspective of those I spoke with is that the decrease in node size will differ at measurement intervals, and possibly for a variety of reasons not clinically stated that include but are not limited to:
1. Tumor burden at time of treatment.
2. Node size and involvement at time of treatment.
3. level of response to treatment at time of CT scan.
4. Patient Rai stage at time of treatment.
5. Individual patient attributes e.g, health and fitness condition, co-morbidities etc..
6. Individual patient medications and supplementing.
7. Genetic risk markers present
Based on conversation only it is my opinion, given that his treatment continues to qualify as a clinical response, he is under age 65, deemed fit and otherwise healthy with no co-morbidities, no additional medications or supplementing, was not showing an over expression of CLL in nodes or spleen, was not aggressively progressing or has not been at stage 4 Rai for more than 6 months, It would be reasonable to expect a measurable decrease in nodes to begin within 5 months after reaching full dose venetoclax.
I know of no one who entered the trial that I was in to have identical circumstances or responses. And from conversation with my doctor, I expect that even though with clinical expectations regarding lymph node measurements for decreasing in size over time during treatment, there is no absolute that can be expressed or stated precisely.
The question of node size in response to treatment can only be appropriately addressed by the doctor most familiar with the treatment regimen, and the individual patient.
I hope his response is expedient and of the greatest benefit.
Hi, I had 4 weeks of Rituximab before starting Venetoclax and by the time I started Venetoclax my nodes were already significantly decreased. By the 3rd week of Venetoclax ramp up, swelling was pretty much gone.
I am scheduled to come off Venetoclax at the end of September. I have had no problems with it other than nausea, which frankly, was worse during pregnancy! I did have to reduce back down to 300mg daily because of the nausea. I have had no neutropenia so far, though my ALC is under 1 now. I tested undetectable after 6 months of treatment. I am very happy with this treatment. I totally have my life back again and as soon as it is safe virus wise, I’ll get back to being in public.
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Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)
New SLL diagnosis 
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