PET Results

[loveRicky]

Waldenstroms in 2012. CLL in 2023. Not sure what all this means. Symmetric activity present in the region of the right arytenoid muscle. Activity noted in tongue base/vallecula. Further evaluation warranted. A subcarinal node present measuring 1.1 x 0.7 SUV 2.3 in mediastinum. Mild focal activity in right hilum SUV 3. The heart is mild, bordering moderately enlarged. Small pericaridal effusion now evident. Kidneys low density 1.9 cm structure upper pole right kidney. Focal activity is present involving the left posterior medial thigh muscular structure. Small cutaneous lesion in medial left calf best seen series 2 image #92 measuring 6 x 2 mm, SUV 2.3. Bones: centimeters asymmetric activity involving the iliac bones. The left has an SUV of 3 and the right 2.1. The marrow signal within the thoracic and lumber spine is under 3.2. Could be infiltrative disease but difficult to distinguish. I do have lymphedema in the left leg. Not as much swelling, but many sores and brown discoloration. The brown discoloration is beginning in the right leg too.Last bloodwork showed: wbc 2.6 rbc 3.47 MCV 101 MCH 33.1 Platelets 129 Neutrophils (absolute) 1.3.Creatinine 1.42. eGRF 38. Immunoglobuline A, Qn 59. Free Kappa 49.6. Free Lambda 29.6 Kappa/Lambda 1.68 Beta 2 Microglobulin 4.5. I NEVER can get a SED rate. Always says there is an interfering substance. Any information anyone can give me would be very helpful. I do get terrible night sweats and experience fatigue. I attribute ALL to the aging process. I will be 79 in January.

[lankisterguy Volunteer]

Hi loveRicky,

I suggest that you edit your original post and lock it (restrict it to our community)

See 12(c) on this pinned post: healthunlocked.com/cllsuppo....

"c) Changing privacy status on your existing post. If you accepted the default “unlocked” setting for your original post, you might later decide to change it, so more people will feel free to respond. To do that: (i) Go to the end of your post— select "More v" then "edit" from the dropdown menu. (ii) Scroll down to "Who can see my post" and select "Only community members" (iii) Close post by selecting "Post" at bottom left (iv) Check privacy symbol has appeared (little grey padlock)"

Otherwise your personal medical information is open to Google searches from anyone on the internet.

>

Then I hope someone with advanced oncology experience can help you, but I suspect it will require a oncology expert from your medical team to sort out the significance of those PET "hot spots" with higher SUV.

These articles may be useful while you are waiting for your appointment with the doctor that ordered the PET scan:

mdanderson.org/cancerwise/s....

sciencedirect.com/topics/me....

Len

[BigfootT in reply to lankisterguy]

I'm no expert and can't speak to most of this, but based on my own PETs, those are not crazy high SUV uptakes. I have multiple SUVs between 2.0 and 6.4 and the doctors don't seem alarmed. They see it as pretty normal SLL.