I'm sorry to say, Barbara passed away early this morning. It's the end of an era. She was a beautiful lady, had a kind heart, and was adored by all who knew her. She's going to be missed. Please carry on this blog that she started. Hopefully, some day there will be a cure. Robin.
Barbara J.- 11/28/1931-12/29/2019
Liked by Teresa, Volunteer Mentor, Lisa Lucier, peggy1944
Godspeed – Barbara. I didn’t know you – but from the writings you shared you sounded like a strong, fascinating person.
Liked by Teresa, Volunteer Mentor
@friendofbarb Hello Robin,
I'm so sorry to hear of Barbara's death. You sound like you were a wonderful friend to her and her family! Blessings to you for being there for them. If you would like to share more about Barbara, please join a Connect discussion about Loss and Grief. Here is the link to a couple of those discussions.
https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ and
https://connect.mayoclinic.org/discussion/can-joy-and-grief-live-together/
I think you might have some wonderful thoughts to add. Once again, please accept my sympathies on your loss.
Liked by Justin McClanahan
Hello @cormac, welcome to Connect. Facing a new diagnosis can be intimidating and confusing, as is often shared by many of the members on Connect. @81ue, @achris and @zellheff have recently posted about their experiences with BPLL, survivorship and ongoing treatment.
@cormac, if you are comfortable sharing, how is your husband doing with symptoms? Which treatment will he be undergoing?
Liked by Teresa, Volunteer Mentor
This is all very new and frustrating that its so rare. My husband is 64. He had a horrible reaction to the infusion Gazyva in Jan and spent a week in hosp (apparently with a unidentified infection). Now he is starting Venetoclax next week for a year. We will also get the infusions at some point. Is there anyone who has B-PLL who is familiar with this treatment? He doesn't have the 17p or TP53 mutations and has had the night sweats, weight loss, enlarged spleen and swollen lymph's.
Hi @cormac,
I’m tagging @bullwinkle who had mentioned, "I may be in a trial which would consist of either Venetoclax,Ibrutinib, and gazyva or Ibrutinib and gazyva.” You can read the full post here:
https://connect.mayoclinic.org/discussion/using-pulsating-electro-magnetic-fields-as-an-adjunct-in-treating-cll/
Hi @cormac, I previously sent you a private message on Jan 1. I have b-pll and after imbruvica failed I'm on venetoclax and infusions of rituxan (the older brother of newer "better" gazyva). It has been 9 months, no night sweats, better energy, few side-effects. I had the bad marker disappear on venetoclax to the amazement of my dr.
@cormac
My husband was diagnosed with B-PLL last month and starts treatment early January. We live in PA. Difficult to find people who have it and as its all new to us we don't know what to expect.
Liked by Teresa, Volunteer Mentor, peggy1944