bflattenor
@bflattenor
@bflattenor
Posts: 62
Joined: Jun 09, 2018
B-cell prolymphocytic leukemia (B-PLL)
81ue...
@81ue
@81ue
Posts: 44
Joined: Feb 01, 2019
Remembering Barbara – Almost a year ago now, Barbara passed away. Barbara had the rare diagnosis B-PLL and started this subgroup looking for others to connect with for support. She gave us, who came after her, a place to start to find others who have B-PLL. When you're alone searching on internet, finding someone else gives hope. Barbara's path was a difficult one, hard to see her go through that, and yet she continued to share her experiences with us. Thank you to Barbara, RIP.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10979
Joined: Jul 23, 2014
Remembering Barbara – Almost a year ago now, Barbara passed away. Barbara had the rare diagnosis B-PLL and started this subgroup looking for others to connect with for support. She gave us, who came after her, a place to start to find others who have B-PLL. When you're alone searching on internet, finding someone else gives hope. Barbara's path was a difficult one, hard to see her go through that, and yet she continued to share her experiences with us. Thank you to Barbara, RIP.
@81ue, what a lovely tribute to Barbara (@bflattenor). You're so right that Barbara's legacy of sharing and caring lives on in this subgroup on Mayo Clinic Connect. I share this moment of memory and gratitude with you. Rest easy, Barb.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10979
Joined: Jul 23, 2014
Remembering Barbara – Almost a year ago now, Barbara passed away. Barbara had the rare diagnosis B-PLL and started this subgroup looking for others to connect with for support. She gave us, who came after her, a place to start to find others who have B-PLL. When you're alone searching on internet, finding someone else gives hope. Barbara's path was a difficult one, hard to see her go through that, and yet she continued to share her experiences with us. Thank you to Barbara, RIP.
@81ue, checking in. How are you doing?
northbay
@northbay
@northbay
Posts: 9
Joined: Dec 07, 2019
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10979
Joined: Jul 23, 2014
My husband is not doing chemo as he’s had it twice and found that it did a lot of harm His aortic valve had to be replaced. He is trying Salicinium with the hopes that it might maintain his health. I would have rather he tried a treatment but he refuses at this point.
@northbay, I can understand both perspectives: yours and your husband's. Chemo is often referred to as the cure that is worse than the disease. I know you wish he could have tried treatment. Are you at peace with his decision?
northbay
@northbay
@northbay
Posts: 9
Joined: Dec 07, 2019
@northbay, I can understand both perspectives: yours and your husband's. Chemo is often referred to as the cure that is worse than the disease. I know you wish he could have tried treatment. Are you at peace with his decision?
I suppose I am but if things get worse then I’m afraid I won’t accept his refusal to do whatever it takes to get better. He sometimes thinks he knows more than the doctors. He feels they can’t help him. Unfortunately I would listen to the doctors and that’s where we differ.
@81ue
After I had to get off of imbruvica (due to that type of drug not working any more and me getting hospitalized with sepsis) I went on venetoclax with very good results and have been on it one year now. If you can get that, try it. An alternative to imbruvica (if you need an alternate but similar drug) is to try acalabrutinib which is supposed to have less side effects than imbruvica
Please note that B-PLL is treated the same as a high risk CLL (chronic lymphoctyic leukemia) due to there are so few of us out there with B-PLL. So the drugs for CLL high risk cases should be considered for use for your husband's B-PLL case