Lymphoma may have returned already?

[skinkade]

I finished taking a full round of Gazyva last December after being diagnosed in June. I had no previous warning until night sweats and fevers hit last spring and I quickly went into full symptom mode. My results were almost instant with my first Gazyva treatment and all my blood numbers started to improve. I've been feeling great (walking several miles everyday & exercise classes) , all my blood work has been good including a flow cytometry 4 months ago. BUT, I have now developed what appears to be a tumor on my right jaw area, CT scan this weekend will confirm lymph nodes I assume. So my question is has anyone experienced something similar and what were your treatment options?

I'm obviously devastated by this turn of events as I thought I'd be in a long remission after the Gazyva appeared to have worked so well. I was originally diagnosed with CLL/SLL and mantle cell lymphoma by one doctor an another said it was splenic marginal zone lymphoma. Your thoughts would be much appreciate right now.

Thanks!

[Jm954 Administrator]

I can't say I've had an experience like yours but I was a bit perplexed by the wide variety of diagnoses - CLL/SLL and mantle cell lymphoma by one doctor an another said splenic marginal zone lymphoma. All of these are varieties of Non Hodgkin Lymphoma.

If this does look like a LN (and even more importantly, if it's not) then you really need a biopsy so that you can get the right treatment for your type of lymphoma. If all your other diagnostics were by flow then a biopsy, looking at the LN architecture and some immunohistochemistry tests should give you a definative diagnosis and mantle cell Lymphoma has a specific genetic translocation (11;14) which helps.

The Lymphoma Association website might help, here's a link: lymphomas.org.uk/about-lymp...

Please let us know what happens, best wishes.

[richutchens in reply to Jm954]

After my treatment of Gazyva, I was given an alternative to do nothing or start with the Ibrutinib protocol because i was told that Gayzva would not likely be the "cure". I opted to go with the ibrutinib right away without waiting. As you see, it was not the "cure" for you either. Hopefully your doctor has a treatment in mind that will get you in good health.

[skinkade in reply to richutchens]

Thanks Rich, I'll be looking at various treatment options in the next week or so. How long have you been on ibrutinub? Is it considered a long term maintenance drug for you?

[skinkade in reply to Jm954]

Thanks for your thoughts. I certainly need to educate myself more on the genetic information that I have at this point. All I know is that I was negative for CD14, and several others. Positive for 19,20,5 and FMC7. I i don't know what this truly means. After the CT scan tomorrow I will be scheduled for a biopsy next week.

[MsLockYourPosts Passed Volunteer]

The article about testing - Three important tests - on CLLTopics.org includes a good chart showing the markers that will be present for different leukemias/lymphomas. Much of the information on the site re: things like treatments and prognostics is dated, but the basic explanations are very clear.

[Corkyrissa]

I did the gazyva in 2015 my numbers never were good . Did 6 months of treatment . Started Imbruvica August 2017 have been feeling good numbers going in right direction. I also thought the infusions of gazyva would last longer at least 5 years. good luck

[skinkade in reply to Corkyrissa]

Thanks, I'm sure Imbruvica will be in my future. At least my blood numbers are still okay, Swelling in my parotid gland is still bothersome though. Did you have any prolonged skin rash issues after treatments?

[Corkyrissa in reply to skinkade]

No problems with infusion. The chloramusil was tough on me. My platelets were always low. Wishing you good luck