SLL and multiple myeloma

[teknomek]

I have stage 4 SLL . And now am being tested for multiple myeloma. Anyone here have both CLL or SLL and multiple myeloma? If so what were your treatments?

[Jm954 Administrator]

This is a rare situation but if myeloma is confirmed then any treatment will depend on which is the most clinically important at the time. The treatments are different and will also depend on which country you are located in.

Please let us know how things are

Jackie

[AussieNeil Partner Administrator]

I've been in stage 4 CLL/SLL watch and wait for over 10 years, starting with an SLL presentation. Depending on how chronic your CLL is and presuming your multiple myeloma is confirmed, you may well need to have the latter treated first. It is indeed unusual to have both conditions, but unfortunately not impossible .

SLL is more often diagnosed in a later stage than 'CLL' (they are the same blood cancer), because 'SLL' can remain hidden longer.

Neil

[Jm954 Administrator in reply to AussieNeil]

Myeloma is often diagnosed very late and at an advanced stage but, like CLL/SLL with MBL, there are a group of patients who are diagnosed with 'smouldering' myeloma and need no treatment. Approx 10% will progress to active myeloma each year. They are effectively on watch and wait with similar indications for treatment to CLL and both are B cell malignancies. Monitoring is usually by measuring the amount of paraprotein and other parameters in the blood.

There's a bit more information here: myelomacrowd.org/myeloma-10...

Jackie

[teknomek]

I am sure I have it. the main test for it is the .FREE Kappa(Light chains) Serum .Free Lambda (Light Chains) Serum and the Ratio between the two. My .Free Kappa (Light Chains) is high and the Ratio between the two is high. But my .Free Lambda Chains are normal.

[Youngen in reply to teknomek]

Hi. Just reading this now. My lambda is high and my kappa is in range.

What were your results? Hope all is well!

[nvp815]

Hi teknomek,

I have a friend who was diagnosed with large granular lymphocyte (LGL) leukemia and smoldering multiple myeloma (SMM) about four years ago and remains on watch and wait. She was originally followed every three months, but has now been pushed back to every six-month visits with her oncologist as she remains asymptomatic with stable labs. Wishing you a similar uneventful course if in fact you receive this additional diagnosis. Please keep us posted. Sending positive vibes your way!

Nan

[Kellsten]

Teknomek -Were you tested and if so, what were the results ? I have recently been diagnosed with both CLL and SMM.

[Youngen in reply to Kellsten]

Hi. Just saw this now. What lead to your dx and how are you doing?

[Kellsten in reply to Youngen]

Hi Youngen,

I am still on WW for both. Last labs from July in my medical portal but I'm too afraid to look at them. I just don't know what I should be looking for and it leads me down too many scary rabbit holes. My next appts with both my CLL and MM specialists is Oct. How are you?

[Youngen in reply to Kellsten]

Dx with CLL 5 years ago and have come to terms with it. Recent blood tests possibly point to MM and I’m pretty nervous. Going to see my specialist today and hoping it’s not what I think?!?! 🤦🏻‍♀️

Don’t know much about MM yet and decided not to research any farther until I know it’s even relevant. Not easy to resist it!

W&W for both and appointments as far out as October are good signs I think!

[Kellsten in reply to Youngen]

Youngen, Wondering how your appt with specialist went. Also I realize that I never answered your original question abt what lead to my dx. It was an incidental dx last July during ultra sound for something unrelated. Radiologist swiped wand near my left supraclavicular lymph node. Radiologist noticed node was suspiciously large. Next a CT then later fine needle aspiration of node and CLL dx. Then 6 mo later last February my CLL specialist Very nonchalantly told me my blood test showed “protein in blood didn’t match protein in CLL cells” and wanted to check for MGUS with bone marrow biopsy. Initially I was told I had MGUS by CLL specialist but “not to worry.” I decided to see MM specialist who ran more blood tests and this April during tele-visit I was told I have intermediate risk SMM. I don’t understand any of this. I have since had more blood labs done which sit unopened by me in my medical portal. I don’t want to read them and go down any google rabbit holes. My next appts with both CLL and MM specialists are on October. I guess I’ll find out how my numbers are trending at that time. I hope you appt on Monday went well. Fill me in when you’ve time. K.

[Kellsten]

Teknomek, hello. I have both CLL/SLL and SMM dx. CLL dx in July’19 followed 7 mo later with SMM dx in Feb. ‘20. At this time I am Watch and Wait for both. Do you have any updates with your diagnosis’s? K.