PET Scan

[Pokerguy]

Can anyone translate what this means? From a recent PET Scan

Interval development of significant metabolically active lesions in the left upper lobe extending into the left suprahilar region concerning for possible development of extranodal disease.

[AussieNeil Administrator]

Hi Pokerguy,

How are you feeling and what prompted this PET scan of your lungs? Is it just another of your yearly PET scans? healthunlocked.com/cllsuppo... Eight months ago, you posted saying that your CLL was progressing, but have you started any treatment since then? Basically providing some context, along with some background information in your bio healthunlocked.com/profile/... will improve not only the number of replies you'll get, but also their quality. You've also posted unlocked, which reduces the likelihood of members responding. See: healthunlocked.com/cllsuppo...

PET scans are not usually done when we have CLL, let alone annual ones. CT scans are better at checking for CLL tumour load in your nodes, spleen and other organs. If this PET scan is not another annual PET scan, who requested it and why? When do you see a specialist for their feedback on your scan? Have there been any concerns about your health which prompted the PET scan? How are your blood test trends going and do you have recent LDH or B2M results?

The reason I've asked for the background to your question, is that extranodal presentation of CLL is not common and can be due to transformation to a more aggressive lymphoma. A much higher LDH than baseline can also occur and you'll most likely feel very unwell. It's also usual to have standardized uptake value (SUV) results provided for the more active areas from a PET scan, so that if more investigation is needed, your specialist will know where to target for a biopsy. If a biopsy is needed, the past history is very important, particularly whether you've been in treatment and whether it's been suddenly stopped. That's because that can cause tumour flare, which can be wrongly interpreted if your specialist isn't familiar with CLL. In that case, it's very important to have any biopsy examined by experts in a CLL centre of excellence.

I note that you live in the USA, so you are able to arrange a free video consultation with a recognised CLL specialist through the CLL Society. I'd strongly recommend one in these circumstances. cllsociety.wpengine.com/pro...

Neil

[Pokerguy in reply to AussieNeil]

Neil,

For the better part of 2 or 3 months I’ve felt as if I’ve been run over by a train, extreme fatigue with lymph nodes prominent throughout my body with me sleeping for long periods of time.

I posted pic of last Hemagram. LDH is 258 but this round of blood work was first where LDH eclipsed high end of range, all other LDH tests were within range.

Oncologist put me on Acalabutrinib on 4/13/24, that recommendation came after he performed a bone marrow biopsy. As I stated in prior post once off Venclexta, my numbers began to climb. I had a bone marrow biopsy in late March of this year and an associated PET scan. Oncologist used both to determine drug regimen.

With regard to scans, all are recommended through my Oncologist, I guess I simply complied without knowledge that CT is the preference.

Bloodwork

[AussieNeil Administrator in reply to Pokerguy]

Thanks for the extra detail. I gather that a transformation to aggressive lymphoma (Richter's Transformation), usually results in the LDH doubling or more, so hopefully your CLL has just become more active, triggering your need for treatment. Your lymphocyte count will usually go up when you start a BTK such as acalabrutinib (which is an appropriate choice for you), from the CLL cells driven out of the shrinking nodes. You may well feel worse for a month or so before you begin to feel better, but do get your specialist's take on your PET scan. Hopefully it's just more active nodes showing up, but this is where the SUV results are used to differentiate between CLL becoming more active from an aggressive transformation. The iwCLL guidelines state with respect to PET scans "3.5.2.3. Other imaging methods. Except in patients with proven or suspected Richter transformation, positron emission tomography (PET) scans do not provide information that is useful in the management of CLL.86 Similarly, nuclear magnetic resonance imaging generally does not provide useful information beyond that of CT scanning in the management of CLL and therefore is not recommended outside of clinical trials."

Please provide updates and meanwhile, do consider updating your profile via the earlier provided link so that we can better support you.

Neil

[Pokerguy in reply to AussieNeil]

Oddly enough after two days of Acalabutrinib, my energy level is up and lymph nodes are shrinking at a rapid rate. Had enough energy today to go play 9 holes of golf (in a cart). Thanks for your never ending support, we all appreciate it! Profile filled out this evening.

[Big_Dee]

Hello Pokerguy

I have had two PET scans, but only because of possible Richter's Transformation. Blessings.