here we are again

[CLLWife]

my husbands blood work did not come back good after being great for over 5 years on Imbruvica. Oncologist ordered a Pet Scan since he has never had one. Just CT scans. And more comprehensive blood work. To say I’m a mess is an understatement. We thought imbruvica was the answer to our prayers for it has worked for the last 5 years and he was doing well. But between the blood work and apparently some lymph nodes in his neck. They are concerned. He feels fine otherwise. Anyone else have this happen? What was the outcome?

[Shepherd777]

We need to hear more details than blood work is not good. How not good is it? Can you give us some numbers. Generally speaking one bad lab test does not mean much, rather a pattern of lab tests over several months going in the wrong direction means more. L

Lymph nodes in the neck can be due to other infections and not just CLL. The scan will tell you if there are other lymph nodes, where they are and how big they are. Our bodies are full of lymph nodes. When they get the size of walnuts sticking out of your neck and everybody can see them, that gets our attention, but even that responses to the new treatments in just a matter of weeks at times, as my wife discovered.

Finally, if your fear is well founded there are numerous options that work very well after Imbruvica. There is Venetoclax, Zanbrutinib, Calquence, Piro, etc.

[MovingForward4423]

could be resistant to Ibrutinib. There are new treatments to overcome resistance. Unfortunately resistance to BTK inhibitors is a problem.

[rcusher]

Hi there, sounds a lot like my journey. I was on Ibrutinib for 5 years when I was informed that it looked like it has stopped working for me although I was still feeling good. My Onco/Haem. gave me 2 choices, one was Venetoclax and the other was a clinical trial of the new drug Pirtobrutinib. I chose the clinical trial and would save the venetoclax for another time when needed in the future. The trial was a randomized trial and I was put on Idealisib + Rituximab ( 6 months ) then just the pill. Everything went well for 8 months then the side effects of the Idelalisib took over and I ended up in hospital for 10 days. After 4 months things righted themselves and I was then switched over to the Pirtobrutinib Arm of the trial. It's has been 2 months and so far I have been feeling great. According to my trial doctors there's more drugs in the pipeline and when this one doesn't work for me there is another one waiting.

Good luck,

Jack

[Pacificview]

Pretty normal thing to have happen with CLL/SLL. There are no warranties regarding how long we will stay in remission with our treatments. As we are all so different in our bodies. So normal course is that when one stops working. We move on over to another that will. Plenty more treatments available, so take a deep breath. Don't worry, use that energy to study up on the next best treatment.Its going to be ok...

[Skyshark]

A PET scan looks for sugar uptake (value). For CLL they are mainly looking for lymph nodes with SUV greater than 5. If there is one they will want to do a biopsy of the one with highest SUV.

If there isn't a node with SUV>5 then a switch to Venetoclax based treatment is usual. That may be V+O in US or VenR.

[CycleWonder]

It is unnerving to find a drug that has been working seemingly stop being effective. It introduces uncertainty back into your life. Since the last time your husband needed treatment, options have changed. A lot of advances have been made in the treatment of CLL.

Your husband may even have choices. And some of the newer options have fewer side effects.

Try not to worry too much. In a few months, life will settle back into a new routine and both of you may be able to put CLL in a back burner again and let it stew.

[neurodervish]

Just to add to the great info others shared, I like to think of CLL treatments as a "wash, rinse, repeat" kind of thing. With BTK inhibitors like Imbruvica, the body can build up resistance, but there are other variations available, along with numerous other advance treatments. We are so lucky to have these options.

[flipperj]

B cells are highly adaptable hence chronic relapsing nature of CLL. I understand your frustration but 5 years is a pretty good run for BTKi therapy. I only made it a year before I had to add other drugs to the mix and it was a very rough year at that.

Venetoclax is usually next in line and it is a fantastic drug in my experience.

I wish you the best in your next steps.

[Redneckwv]

yes,going through it now,waiting to see my oncologist

[thompsonellen2]

Not sure why they are giving him a PET scan. The only time I had one (and I've lost count of how many CT scans I've had) is when they thought I might have Richter's Transformation. I did have lymph nodes (I always have) but they started to get very large over just a couple of weeks. And I had lost a lot of weight quickly. Like others have said, 5 years is a good run and venetoclax is probably next. It's just a pill-based treatment and it works really quickly. They might ramp up dose as inpatient if he has lymph nodes, but don't let this bother you if it happens. I know this is disappointing and scary, but do know there is another good and easy next step.

[Analeese]

i’m curious to know that if a treatment fails do they want to put you on something else immediately or essentially are you back and watch and wait until your numbers and your symptoms change as before?

[Skyshark in reply to Analeese]

When a continuous maintenance BTKi treatment fails the recommendation is to start the next treatment while still taking BTKi.

I don't know much about Venetoclax treatments that fail while taking it. Relapse after end of treatment they wait until treatable by the same guideline that are used for first treatment.

[Analeese in reply to Skyshark]

Thank you

[SofiaDeo in reply to Analeese]

I would think it depends on patient symptoms, facility treatment algorithms, and patient request.

Some patients have "held" treatments for various reasons, appeared stable, and didn't restart. People with disease flare with uncomfortable symptoms want *something*. If labwork indicates treatment is needed, something will be started. Depending on where you are geographically can play a part in the order of treatments. Even in the US, large institutions like the Veterans Administration or Kaiser Permanente may have set an order with which to try certain agents, as may some of the other insurance companies.

I know I have a "research" specialist in the US willing to modify precribing information for a drug; other docs may not be so willing to do so. Some of that may be because I have a variant considered "hard to treat" so he's willing to flex more than with a more vanilla, milder form of CLL.

[Analeese in reply to SofiaDeo]

Thank you.