what tests needed for treatment after relapse

[GardenGrandma]

My husband, age 78, was diagnosed with CLL in late 2020.  In early 2021 he had tests that revealed that he has a 17p del. In Oct. 2021 he showed symptoms, SLL, and began treatment with ibrutinib. It was great and produced no side effects. Now his lymph nodes are again swelling. As of PET scan in December, his spleen and other organs are roughly normal size. His lymph nodes are now large enough for me to see and are making him uncomfortable and sleep more difficult. He will see his haemotologist/oncologist on Jan. 30 about beginning a different treatment. My question is, what tests should be run before new treatment?  Thank you all. 

[SofiaDeo]

This is hard to say without seeing the entire chart, and examination. History, physical, previous and current symptoms will influence the tests a doctor may order. If you can get the appoinment moved up, that may be your best bet. The doctor is unlikely to order much of anything ahead of time, besides a CBC and possibly a metabolic panel. Is bloodwork being drawn before the visit? How long before? Certain tests generally take more than 45 minutes or so, even in the ER.

[GardenGrandma in reply to SofiaDeo]

Thanks for the quick reply. This doctor routinely orders blood tests an hour before the appointment. I’ll see whether my husband can get at least a video visit earlier. He is a very busy oncologist.

[SofiaDeo in reply to GardenGrandma]

Call or email/patient portal the office, and report the now visible lymph node changes also making him uncomfortable and affecting his sleep. Let the office decide if a televisit, or getting seen in person sooner, is best. As opposed to simply making a telehealth appointment.

[Edalv in reply to GardenGrandma]

I always request to have the lab work scheduled a day or two before the doctor’s visits. The reason is that I want to see the tests results ahead of the visit. Also, it gives the doctor a more complete picture of the situation while I am at the office. I live just 20 minutes from the hospital and it’s easy for me to do, but I understand that it can be difficult for some people that live farther from the lab location. It used to be frustrating to me when the doctor didn’t get the tests results in time. Now, I have a chance to prepare questions for the visit and get a better picture of my particular situation. To me the extra trip is worth it. I hope this helps… 🙏

[GardenGrandma in reply to Edalv]

we are also close to the lab so we should set that up before this next appointment. The doctor does seem to have the blood work in time for the appointment, but other tests may take longer. Thanks

[SofiaDeo in reply to GardenGrandma]

Maybe print and review the cllsociety.org "Test before Treat" recommendations, and discuss with the doc before agreeing to any kind of treatment

cllsociety.org/newly-diagno...

You can also get a free second opinion, since you are in the US, I believe. After the tests are done, they are sent to a CLL specialist.

I am assuming he already got a Flow Cytometry, it's generally how this particular cancer is differentiated from a few other rare ones. So the other tests recommended above, will help pinpoint if certain treatments won't work and should be avoided. In the US, there is some data out that not all CLL/SLL patients are having certain tests run.

If he got this diagnosis without Flow Cytometry, or FISH, then I think you may need to at least keep a specialist in the loop to guide overall treatment. I have had some wonderful local hem-oncs who weren't "CLL Specialists" per se, but were happy to have a specialist oversee things. Like you may see a dermatologist for a workup who prescribes a certain treatment, but your GP sees you monthly and you see the dermatologist maybe twice a year. With some people here, they see a CLL Specialist yearly, and their local person in between.

[cllady01 Former Volunteer]

The blood tests when treatment is determined to be needed again will include a Flow Cytometry test again. I guess I should rather than 'Will', should.

[GardenGrandma in reply to cllady01]

Thank you. He now has an appointment on Monday with blood labs beforehand. We will ask then for flow cytometry before beginning any new treatment.

[Ironcore]

Ask your oncologist about CAR-T treatment as a possibility. I believe there is currently an upper age restriction so once he gets older he will not qualify for it.