My CLL specialist left town and I am left with only her NP. I am at a decision tree about my V + O treatment and am trying to find a CLL center in the USA that has participated in the studies looking and V + O.
I would like to go there to seek out a second opinion about a few issues as I approach decision time about duration of treatment issues, needs for a couple of surgeries etc.
Does anyone know of a clinic that is involved in the research on V + O, especially involving patients being treated with it for relapse.
Thx
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The Patient Power website lists Deborah Stephens DO as Director of the Chronic Lymphocytic Leukemia (CLL)/Lymphoma Program at the Huntsman Cancer Institute at the University of Utah. She has many video interviews on the Patient Power website and seems very experienced and has a lot of experience using V&O. See:
I started v+o two weeks ago. I can only state that in two weeks my counts went from 51 to 7,000. I was on watching wait for 8 years. This is the first time in 8 years I can think clearly and have energy to do things so it works. I am not a fan of infusions. I have a set of noise canceling earphones. I put those in 5 hours later I'm done.
Good morning!☕️ I just looked at all the resources that were sent to you. How amazing people are on this site! Always ready to help!!! I hope you are able to connect with a CLL specialist regarding your clinical trial. It’s tough loosing a provider that you really connect to. I hope for a good outcome for you!🦋👩🦳
Good morning. Check out Moffitt Cancer center in Tampa Florida. Dr Javier Pinilla was involved in trial for V+O. He recommended this treatment to me after seeing him. About his involvement:
The CLL14 trial (NCT02242942), which compares the safety and efficacy of fixed-duration venetoclax plus obinutuzumab (Ven-Obi) against chlorambucil plus obinutuzumab (Clb-Obi) treatment, focuses on patients with previously untreated chronic lymphocytic leukemia (CLL) and comorbidities. Notably, this trial is the first to compare a novel, chemotherapy-free, fixed-duration regimen with chemoimmunotherapy for treatment-naïve CLL patients, including those with del17p or TP53 mutations1.
Dr. Javier Pinilla-Ibarz, a distinguished hematologist and oncologist, has been actively involved in this trial. He holds the rank of Senior Member and serves as the Head of the Lymphoma Section in the Department of Malignant Hematology at Moffitt Cancer Center. Dr. Pinilla-Ibarz’s expertise in chronic leukemia is nationally and internationally recognized, and he has authored over 120 peer-reviewed publications. His clinical interests encompass chronic myeloid leukemia and chronic lymphoid leukemia23.
The CLL14 trial’s long-term safety outcomes have been closely monitored, and the 6-year efficacy and safety results were recently presented at the European Hematology Association (EHA) 2023 Congress. At a median follow-up of 76.4 months, the 6-year progression-free survival (PFS) rate was significantly higher in the Ven-Obi arm compared to the Clb-Obi arm. Notably, patients without TP53WT had significantly longer PFS than those with TP53 deletions/mutations across both arms1.
Dr. Pinilla-Ibarz’s contributions to this trial have advanced our understanding of CLL treatment options, emphasizing the importance of targeted therapies in managing this disease. His dedication to research and patient care continues to make a significant impact in the field of malignant hematology2.
I just saw my Oncoligist /hemitoligist in Naples yesterday. My response to the treatment has been quite frankly unbelievable so far. I started on V+O last June after being on watch and wait for 7 years. My response was quick and my blood was in acceptable ranges in only 5 months. I am completing my treatment with Venetoclax at the end of May.
Everyone is different but I had no side effects since the treatment started. I've previously posted my results .
My Dr has been in hematology for 35 years and he said yesterday that this treatment is the best we have right now.
Now I am waiting for May to come to do the tests to see if I've reached immunity. Good luck. I liked the idea of this plan because after a year you may get 2-3 years of freedom from any treatment Where ie. Calquence you may take daily for years.
It’s exactly because of my fatigue, muscle pain, and nausea, despite having been on Venetaclax for almost a year that leads me to want to decide if it’s a Venetoclax and stop at one year or something else could be going on that could be treated I can get rid of my symptoms and if that’s the case I’d be happier about continuing the recommended two years
I was partially treated for three months with FCR in there for the debate was one versus two years on then.
My CLL specialist who is world renowned left town to do research so I’ve seen only a nurse practitioner that does General Oncology for over a year.
As I only had three of six rounds of FCR, there was a debate about taking Venetoclax for one versus two years.
I would like to run this by CLL specialist as opposed to my nurse practitioner, but the clinic is short staffed. get in with a regular, CLL doctor.
The one-year appeals to me because I still have a lot of fatigue, muscle pain and nausea and if it is due to the Venetaclax, then stopping is definitely appealing.
I’d like to run that by CLL specialist as opposed to my nurse practitioner.
That is interesting. Thank you for sharing that information. I wish there was 20 years of additional data on these drugs to help us make informed decisions. At least we are compiling that info for those behind us. Good luck!
I finish O and V at the end of April. My current side effects are red blotches on ankle and feet, itching, nausea, muscle aches and pains, fatigue. Over the last couple weeks I have been taking the Ven/valcyclovir with a 50mg benedryl. Instead of taking the benedryl after the allergic reaction starts to spread. Since I have been taking the benedryl preemptively. Side effects have lessened.So your not alone on Ven side effects. Still gutting it out with the full 400mg daily. I am very much looking forward to being done.
Awe thanks for sharing. I haven't taken valcyclovir but when I was on FCR in 2018 it was 1 of 4 antimicrobials I was on for 9 months due to neutropenia.
My dr, Dr Nicole Lamanna, is in NYC but she does phone consults, if that is of interest to you. I did V&O with her (not sure about trials). I can’t say enough about her. My sister-in-law has a local team in Florida but consults with her via telehealth every 6 mos.
Yes, I definitely had nausea. Then Dr L suggested taking the pills at night so I’d be asleep for most of the nausea (it was worse after taking the pills). That did help. I also discovered it was worse when taken with food for me, so made sure didn’t eat for 2 hours beforehand. I also took Zofran for the nausea. I remember eating a lot of saltines too! I think the nausea did go away eventually. I didn’t have muscle soreness, but was very very tired and had joint pain. As a matter of fact, I still do (1.5 yrs after V) and sometimes think it’s still from V. Dr L says no.
RMCC is the practice group participating in the most CLL research studies for this region. FWIW the Aurora location is the one I prefer, and it's their research location. For hospitalization I like Swedish Medical Center.
I know of at least 2 other people locally who switched to Dr. Burke. We have other great CLL specialists here, just, he's the research top dog IMO. And RMCC takes many types of insurance.
I have completed one year V&O in November of last year. I was relapsed from B+R treatment. I am not sure what type of information you are seeking. Doing good for last year after first month on V&O. Information about surgeries might be hard to come by anywhere. I was told by my CLL Specialist, that venetoclax does tend to thin blood. Don't have any recommendations even though I am from Colorado.
I made it through three rounds of FCR and then stopped due to profound neutropenia for about nine months.
My CLL specialist moved out of town and I haven’t seen anyone with a nurse practitioner for over a year.
There was talk of doing blood for MRD status. It may be stopping after a year but I’m hoping to run that by someone that’s more of an expert then a general oncology nurse practitioner.
My second question is. I am almost one year into treatment, and I still have a lot of muscle pain and fatigue and haven’t regained the energy levels and strength that I had several years ago.
I hear stories like yours and wonder if Ven is causing my symptoms or if something else is going on?
If the fatigue, muscle pain, and nausea are from the Ven stopping at one you’re supposed to have a lot of appeal for me right now at age 66.
So that’s the two basic questions I’m trying to sort out.
I stopped treatment after 2 years on venetoclax, at uMRD4 but not uMRD6, it was 12 per million. That remission lasted a little over a year.
It's unfortunate that your are having some side effects, but do remember you body is killing off CLL & clearing out nodes & bone marrow, metabolizing and excreting dead cells. Meanwhile, your marrow may be working overtime in attempts to make new platelets, neutrophils, and RBC's in addition. So it's no surprise to me that while under treatment, you may not feel able to push yourself physically, since you are expending energy dealing with the CLL. And when you do push yourself physically trying to do the same things, you either can't, or are more exhausted than usual afterwards. I am reminded of how you posted you think obinituzumab caused severe exhaustion after your first infusion, and seemed to disregard that you went shoeshowing at 12000 feet the next day.
It's great we can just take some pills, or have intermittent infusions, instead of being ordered bedridden, but please do remember we are *under treatment*. You remind me of a teen I knew when I was younger, who broke his leg & refused to stay put until it healed enough for a walking cast. Unsurprisingly, the break didn't heal as expected. He kept running around on crutches when he was supposed to not do as much. Several *years* went by & he was still in a cast. That break never healed properly.
Patients with pneumonias take longer to heal if they refuse to stay in bed as requested. As a physician, I am sure you are aware one of the first things a patient diagnosed with walking pneumonia is told to do, is to stay in bed initially. The body needs to concentrate on healing, not fueling skeletal muscle activity. Some of our members don't have the luxury of being less active, they must continue to work or take care of kids or others. So even if tired, they have to push themselves.
So if your body is telling you to slow down, perhaps it would serve you better overall if you didn't constantly push yourself physically. It's no fun being less active than usual, or hearing stories of others who don't have changes in their energy level and continue "life as usual", but we probably should do what's best for us as an individual.
If you thnk this is strictly a medication side effect, explore switching meds.
Dr. Alvaro Alencar at Sylvester Comprehensive Cancer Center (University of Miami) is extremely well versed and informed. He is involved in trials and research. He does telehealth, also.
Today and tomorrow are my EOT Dr. appt, labs, CTs and bone marrow biopsy for MSK Trial 20-044: fixed duration, O+V, uMRD guided therapy for fit front line CLLrs. I was very fortunate to be uMRD 6 after 6 months and ended the V last night after 9 months.
I believe MSK does have other CLL trials. My CLL specialist is Dr. Mark B. Geyer, he and his team are excellent.
I did have a zoom with Dr. Nicole Lamanna at Columbia P Hospital and I liked her a lot, she confirmed what Dr. Geyer has done and told me.
I would highly recommend and have confidence in both.
Will report after today and tomorrow's exams Given I was high risk TLS, even after the initial obins, the 5 week ramp up meant 5 days a week at the outpatient bldg, v long days.
The V gave me severe headaches 2-3 x a week, 45-60 minutes after taking it. I switched to taking it at night and the headaches would wake me up! Also extremely tired and stomach issues, am thrilled to be u MRD6 after 6 months (they wait till total 9 months treatment for second uMRD6 confirm to stop treatment) and back to "watch and worry."
On CLL14 V+O 72% were uMRD4 by cycle 7, 34% uMRD6. By 3 months after end of treatment, 11 months it peaked at 78% uMRD4 and 50% were uMRD6. The additional 5 cycles deepened the MRD but doesn't seem to increase the numbers. Most of the additional 6% were previously "missing" and most likely also uMRD4 by cycle 6. It doesn't last very well.
FLAIR V+I had 92% reach uMRD4 by year 5 but a lot were on treatment right to the end of the trial.
Thank you Skipro, the 9 total months were made worse with the 5 days a week at the hospital for long days (that were not expected). Tonight the Dr. said he "wouldn't be surprised if there is some CLL left in my BM (it was .04% in Nov) but he said I would still stay off the V, IF the one lymph node in my stomach (reason for high high risk TLS) is still large "we will talk about it." Am doing my best to stay optimistic :that the upper CT from tonight shows all nodes <1.0 CM, the lower CT scan not posted yet. The waiting is the worst.
God bless and sending you positive vibes and all good wishes from NYC.
I was on V+O for 12 cycles. The initial stays as an inpatient were poorly managed. That resulted in being admitted late, day 1/2, 8 and 15 of Obinutuzumab were actually day 2/3, 9 and 16. Venetoclax, the 20mg and 50mg were 12 and 8 hours late, that lead to an extra day and 2nd round of TLS blood tests. One of the outpatient TLS blood tests was booked for 2pm, at 3pm I had to demand they do the blood draw. Didn't get sent home until 5:30pm as when the results arrived after 5pm they had problems finding a doctor to approve the results, the place shuts at 6pm. The staff nurse that thought I was kicking up a fuss admitted somewhat shocked "you were right, it does take over 2 hours to get urgent blood tests". They were a lot sharper about getting the blood draw on time after that, the staff nurse was there waiting for me.
Started with a massive conglomeration of mesentery lymph nodes, 14APx21cm by CT scan 4 months before starting treatment. High risk TLS, they did a CT scan after 3rd dose of Obinutuzumab, before starting Venetoclax, I was still High risk TLS. A 3rd CT scan towards end of cycle 6 showed no lymph glands that were bigger than 1.5cm. My spleen wasn't very large, 14cm and had reduced to 12.8cm.
At start of cycle 7 I was judged to be at unconfirmed complete remission. For confirmation a bone marrow biopsy is required, that's going to be middle of this month, with another CT scan the day before.
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she was great but now gone
Heartbeat pounding in my head.
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