CLL/Lymphoma in second remission

[BarbLorraine]

Hello, I was diagnosed w/ CLL in 10/12 and was treated with BR for only 2 months because of suspected side effects. However, I responded well and went into remission for 5 years. I had a recurrence in 7/17 and received only Rituxin for 4 weeks, 1 day/week. I had another great response to Rituxan and am back in remission. So, what are your experiences with recurrences at this point? My oncologist said that I would "be around" in 5 years, but expects recurrence in about 2-3 years.

[Ballyhoo77]

Hoping your second round last longer than the first.Wishing you the very best. Happy Holidays

[AussieNeil Partner Administrator]

Treatment with the same drug generally gives shorter remissions as the CLL develops clones that don't respond as previously. CLL becomes resistant and when we relapse, we can be termed refractory to the previously used drug. There have been so many new drugs released recently for CLL that I would expect that your specialist should be able to offer you an alternative to Rituximab/Rituxin monotherapy should you need treatment again.

Neil

[lankisterguy Volunteer]

Hi BarbLorraine,

As AussieNeil replied, repeat treatment with the same drug, especially Rituxan generally yields shorter time to progression. Rituxan monotherapy is rarely used in CLL since it can be much more effective when used in combination with other drugs (like Bendamustine- your first treatment), and is often paired with some of the new targeted therapies.

My first hematologist was inexperienced and used a Rituxan mono-therapy protocol approved for Follicular Lymphoma, I only learned that when I consulted with a CLL expert at Stanford.

If you haven't yet, you should consult with a CLL expert for a 2nd opinion, preferably now, but especially before getting treated the next time. If distance and cost for the 2nd opinion is an issue, the CLL expert can guide your current doctor to help you choose the most effective treatments and have them locally, while you can visit the CLL expert infrequently.

There are several listing of CLL expert doctors like this one:

cllsociety.org/toolbox/cll-...

If you tell us your general location we may be able to share personal experiences with certain doctors.

Len