I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated.
We have two CLL experts who propose different treatment plans for first-line therapy:
1) Monotherapy Ibrutinib or Acalabrutinib
2) Combination therapy Gazyva and Venetoclax
We know that treatment 2 is fixed in duration and holds promise for disease clearance for an indeterminate period of time but with a need for retreatment. We also know that choice one is "tried and true" but for an indeterminate about of time until retrearment is needed.
To add to the complexity:
- There is such little information about B-PLL treatment.
- There is no head to head clinical trial between the two plans.
- There are no NCCN guideline for standard first-line care, particularly for transformed PLL.
Yet, we know that sequencing of meds is critical to control this disease.
I ask for your personal experience or research, so our family makes an informed decision on the best course to take for my dad's transformed CLL. I know this group can help us or point us in the right direction.
Thank you for your time, care, and help.
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Phs2385
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I would agree with DriedSeaweed - your Dad and his doctor (s) can choose either one first and then another.
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I've had that type of decision to make 4 times since 2008, and each time I "played the hand I was dealt" the next time, the factors and choices were different. Planning ahead rarely works for this disease.
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Dr. Furman (my doc and a World Class CLL expert) encourages me to go for what I believe in has the best chance of success and not save a better treatment for later.
I am so appreciative of your response. How are you doing now? I have shared your twelve years of resilience with my dad--who at this point is very emotionally and physically exhauasted--and it gave him a big smile.
What is Dr. Furman's preferred first-line treatment now that targeted therapies are frontline? I understand that the plan will be different depending on the person, but I appreciate the insight you share about Dr. Furman's current first-line for PLL treatment though there is no standard.
I believe the combination therapy is the stronger "POW!" choice, but I worry that the durability of disease control is stronger with ibrutinib (since it has been around longer), whereas there is no information about venetoclax-gazyva.
On a tangential note, I love watching Oncnow videos from Dr. Furman and Dr. Mato. You have the best of the best.
Thank you for these leads, Len. I will compose my message for Dr. Furman now.
As for the CLL second opinion, would my dad be ineligible since he already has a listed CLL expert on his care team? That is one of the criteria on the website: "To participate in the Expert Access Program, you must be...without current access to a CLL expert."
We stand in solidarity with you, Nix...we are very appreciative of finding this forum and you are all such kind people.
in reply to
from my experience with b-pll. Local oncologists/hematologists are not 'immedietly privy' to the latest info which is usually generated at big hospitals with cll specialists. They treat b-pll as high risk cll but b-pll is more aggressive.
I would go with a multiple drug to get the best response.
I might ask my two doctors if they would get on a call and see if they could arrive at a consensus.
Or I might ask each doctor to walk me through the pros can cons of each treatment, and then go with the one that convinced me the most.
I might go with my gut and just the doctor I have the most confidence in or go with the doctor who has more experience between the two.
Or I might do what Len suggested and see if Dr Furman would give you an opinion and break the tie.
It feels like a close call to me. if I had to make the call today, I might go with the time limited option and keep ibrutinib in my back pocket for later. Its good to have two good options. Good luck.
I was on imbruvica monotherapy for 17 months for B-PLL (that I'm told looks like CLL) before imbruvica stopped working. Imbruvica worked to reduce the tumor load, WBC reduced slowly and steadily over time on imbruvica. The dr. was afraid to give me rituximab initially because my WBC was in the 400Ks when I started treatment. I'm now on venetoclax and rituximab combo and I ask each time I see the dr. about stopping date, but after this year, I'll stop rituximab only and talk is to stay on venetoclax alone even after the 2 years are up. It's just been a year of venetoclax up to now. At the 2 year mark on venetoclax I'm going to keep asking about a stop date, but the dr. just doesn't know the answer about stopping. I think there's also fear about not knowing what B-PLL does after venetoclax is stopped. If your father's doctor says it is fixed duration and he'll be able to stop, that's great. That's not what I'm hearing for my situation. For B-PLL there aren't enough of us to make a general recommendation, we can be an individual case study though, and look at CLL treatments and outcomes for our high risk diagnosis as a guide. Your father's treatment recommendations will be individualized as it must be since it is a rare condition, and his responses to treatment as with CLL patients is not going to be following a general path. That said, in my case, I prefer the venetoclax. I thought I felt very fatigued on imbruvica with side effects of dry skin, petechia, bruising, hair curling and just being done with moving at 3pm due to fatigue. In comparison with venetoclax I've got much more energy and a not so bothersome slight nausea side effect for the hour after taking the pills with food.
81ue, the Venetoclax + Obinituzumab is a regimen for First line treatment, whereas the Veneteoclax+Rituxamab is for 2nd line treatment. At least that is the way they have been described.
I'm 3rd lining. First they wanted to do FCR, Fludarabine immediately failed (no wonder as I had 17p and tp53 bad markers) and they were too scared to try Rituximab. Imbruvica worked 17 months, and now I do venetoclax.
Jeff & 81blue, thank you for taking the time to respond so thoughtfully to my post. I will continue to pore into the leads you've provided me. ::HUGS:: and thank you is just not enough. My dad is reading every post and though he is not Internet savy, he wants me to tell you that he is so incredibly grateful to you all.
The doctor told me my father has paraimmunoblastic cells which make the cancer even more aggressive. Does anyone have experience with this; do any studies show a drug that can kill these cells?
That's a good question for the doctors. I've never heard of that term before, but for what it's worth, my messed up 17P and tp53 cells "disappeared" from bone marrow biopsy (BMB) after treatment. I haven't had the MRD (minimum residual disease) tests yet but the bad cells were destroyed enough that they could not be found with regular BMB at the same site as my initial BMB when I was diagnosed three years ago. One day I hope I can have the MRD test to know for sure, but I take comfort that for now the bad cells can't be found.
Thank you for taking the time to research and for sharing with me that the cancer on the mutated cells was destroyed. Very heartening. You are are wonderful 81ue.
No, my WBC is below normal and neutrophils are below normal on venetoclax. Range from tests July 2019 to present is 2100 to 3000 WBC and neutrophils 695 to 1230. I'm on a reduced dose of 300mg venetoclax, I also get rituximab infusions
My husband was diagnosed with B-PLL in Nov 2019 that we were told evolved from CLL. He was told he needed treatment immediately and it would be O plus V. I got a second opinion from another top hosp and she said that was exactly what she would recommend. He did have an awful reaction to the first O infusion and then landed in hosp the following day for a week with severe abdominal pain so the dr said he would ramp up on V and return to the O infusions at a later date. He had his 1st app early April since his top ramp up dose dose (for scan results) and they are very pleased with his progress. They said while lymph nodes are still swollen cancer calls are 80%-90% gone. They will reschedule O infusions when Corina leaves us! He does have nausea/diarrhea every few days but so far so good. Good luck to your dad.
Thank you so much for your personal experience. This is such positive news. Does your husband have immonoblast cells? If your husband does not, could he ask his doc how he would proceed with treating this type of mutated cell?
I would be so interested to know because this added component makes my dad's B-PLL even more rare.
His next app is May 1st and I am writing down a lot of questions for him to bring in (in case, like the last app I am not allowed in due to Corina). My husband doesn't seem to ask any questions and I barely know what his markers are. So, I finally reached out to Cajunjeff (above) to get help with what kind of questions I should ask and I will add yours to the list!
I have to complement you on your thoroughness, you are doing a great job caring for your dad! I was wondering, if I may ask, how old is your dad and how would you describe his general health. Is he able to live an independent life, for example. That said, I do not have the skill set needed to tell you (1) or (2), essentially that is a personal decision among your dad, you and the medical doctors caring for your dad. I am the primary caregiver for my mom, 93 years old, who has CLL, and is being treated with Calquence. I can give you 2 pieces of advice: 1) has a general chemistry screening be done, so kidney functions, etc. are known prior to treatment. The chemistry profile might suggest a best approach.; 2) do not expect complete certainty for any treatment path. Your journey is just starting, and you have to take it day by day. These are drugs being administered to people, and each person will have a slightly different response. Monitor, monitor, monitor! There will be monitoring, adjustments to medication, looking for adverse reactions, more adjustments, etc. Choose the path that seems best, expect side effects, and monitor to make sure your dad is doing well. God bless you and father, let us know how he is doing, on the journey you are both sharing.
What a wonderful compliment--you, likewise, are an incredible caregiver. My dad is 65, and prior to treatment his favorite activity was being a lumberjack. Now, he experiences fatigue, joint pain, and has difficulty walking up stairs. He is on a steroid right now for joint pain which is helping him with energy, as well. We start obinituzumab on Tuesday, everyone. Positive vibes and tips welcome. I know he needs to drink a lot of water after treatment. Thank you so much for your kindness, BaseballGardener.
I know it is a tough decision when you have two choices. I had choice of ibrutinib and B+R chemo. I talked to 5 CLL Specialists and 2 H/O doctors. In the end it came down to my personal decision based on my general health, age and how long I wanted to do treatment. I have CLL and am now in deep remission, but know there are new treatments coming in future should I need them. Blessings.
Hi I Am 50 yrs old and have B-PLL and started ibrutinib in January of this year. I immediately felt better , still have some fatigue but feel like I have my life back. Recently went for tests and my wbc counts have levelled off staying the same for the past 2 months. My oncologist is sending me to meet with the stem cell team at the hospital to discuss this as a treatment option. I will be starting venetoclax soon to see if it can help.
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