CLL on the spine

[BraddyB]

UK based male with a lymphoma mass on T4-T-10 causing spinal compression at T-07. Diagnosed CLL only last week (April 2024)… but very low levels CLL under 15% biopsy/ blood. Biopsy Not taken from spine mass.

any one else have CLL on their spine?

[lankisterguy Volunteer]

Hi BraddyB,

Have any of your medical team used terms like Richter's transformation or DLBCL?

Many years ago one of our Volunteer Moderators had a condition that sounds similar and was diagnosed with DLBCL diffuse large b-cell lymphoma, and with Chemo treatments was able to be cured of the DLBCL, but his CLL remained.

We are not medical experts, able to diagnose or prescribe treatments, so you may want to inquire about how your medical team plans to proceed with further tests to get a definitive diagnosis and then develop a treatment plan.

-

Len

[sdowney8600]

I have it in my thoracic spine at T-11. I have some degenerative spine issues and osteopenia and so the softened bone area has been infiltrated by the CLL is my understanding from my oncologist.

[claree_ford in reply to sdowney8600]

My (totally unmedical) take from that is that you need to see a haemetologist with a specialist interest in CLL and Lymphomas - Oncologists seem to be not so much the way to go as this particular type of cancer is unusual to them.

[sdowney8600 in reply to claree_ford]

Sorry I should clarify. I see two oncologists and both are hematologists & CLL/SLL specialists. One is my more local doc and I see him every three months and then my second one is a CLL specialist at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore, MD, and I see him every six months. I have a genetic cancer mutation that I am being followed for so I try to have my bases covered! Thank you for the advice though because you are 100% correct.

[Danie50]

prayers to you! Make sure you get all your questions answered. Don't forget to write them down so you don't forget! Keep us posted on how things are going !🤎🤗🧡