Return of SLL

Hi All I was diagnosed with SLL in 2011, on w/w finally having chemo in Jan 2013. Have been in remission since then but unfortunately am fairly certain its woken up again. have consultant appt in 2 weeks, he was happy to see me earlier than original appt. Anyone else out there had a return of SLL. If so did you end up having chemo quicker 2nd time around. Thank you

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  • I was diagnosed SLL in 2011 and got FCR also. After 5 years of remission, Its back now. Again started FCR and 1st cycle is completed.

  • Hi, hope all goes well for you

  • Was Ibrutinib offered as an option? Or is it not available in the country where you live?

  • Hi, have never been offered ibrutinib, , is available in the U.K., but I responded very well to bendamustine 1st time round. Will see what the consultant says in 10days time

  • Tigger-may I ask why you feel SLL symptoms have returned? What are they? I have had SLL one year and my endurance has gone south! Tired much more and I have episodes of head sweating 3-4 times per week. Occurs during the day neck, hair drenched and face. Doc says until symptoms worsen so be it. Since symptoms occur with exertion saw cardiac doc but he feels not cardiac. However scheduled stress test and echo. Labs all fine.

    Best of luck with your upcoming visit.

    Kathy

  • Hi Kathy, I have gone from no swollen nodes in my neck to having several again. They have been steadily increasing in size since end Feb, also got return of the tiredness.. hope things improve for you soon

  • Thanks Tigger!

    Good your visit is soon! All the best!

    Kathy

  • Hi Tigger53,

    Keep in mind that SLL is the same cancer as CLL just manifesting in the lymph tissues. When either SLL or CLL relapses it comes back more resistant to the therapy one had before resulting in shorter remissions.

    Guidelines for when to treat on relapse are the same as the naive to treatment W&W patients because there is no benefit or survival advantage to faster treatment. If prior treatment used chemo it would be wise to ask or push for getting a KI (kinase inhibitor) like Ibrutinib (Imbruvica) for your second "bite" at the TX apple.

    WWW

  • Thank you

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