I was hoping to go on the Flair trial last year but failed at the last hurdle, my bone marrow biopsy showed I did not have the TP53 deletion which in itself is good news but disqualified me from the trial. A year later and I am booked into hospital from 5th November to start Venetoclax. I am curiously excited about this, I think it is probably the feeling of “doing something “ at last having been on W&W for 15 years! I know there are some possible side effects eg TLS which is why I will be hospitalised for the first week so the doctors/nurses can monitor any reaction. Do any of you lovely people have any advice, apart from hydration? Have you had good results from venetoclax? Any thoughts/advice would be much appreciated. Thank you, regards Terri
venetoclax: I was hoping to go on the Flair... - CLL Support
venetoclax
Venetoclax really is an amazing targeted therapy. It's actually a second generation drug, more tightly targeted than the first version, called navitoclax. When clinical trials began, participants saw incredible results for a targeted therapy, with MRDu being achieved far more often than with other targeted therapies. It's the primary drug used in combination with other CLL drugs in fixed term combined targeted therapy options.
I presume your treatment is venetoclax +obinutuzumab? The two drugs work differently, reducing the risk of resistance developing, so the treatment can be repeated later if needed, plus increasing the likelihood of achieving MRDu and a long remission. The TLS risk is because the drug works so well. Your body can be overloaded with the chemicals released from all the dying CLL cells. The venetoclax ramp up and (when your CLL tumour is large enough) hospital testing and observation, greatly reduces that risk. Sadly 3 early clinical trial participants lost their lives due to TLS, because researchers hadn't anticipated the adverse events possible due the drug's effectiveness. The clinical trial was stopped and only restarted after the extremely effective precautions against TLS were introduced.
Neil
Thank you 😊
Hi Singist,
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I took Venetoclax starting in 2016, and was in the hospital for 30 hours on two successive Tuesdays to Wednesdays, while my blood was checked about every 4 hours to determine if my minerals were rising (phosphorus, potassium, calcium, uric acid). Then the following 3 weeks I arrived early Tuesday morning to take the increased dose and have blood tests several times during that day, and again on Wednesday morning.
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I had minor side effects but wonderful control of my CLL for 6 years, reaching MRD-U (Minimal Residual Disease - Undetectable or Unmeasurable) several times.
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I stopped taking Venetoclax last month. when my MRD test showed a steady increase.
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Venetoclax worked better and had fewer side effects than any of the 3 previous drugs I took, and I believe that most patients would stop taking the drug when they reached MRD-U usually at 12 or 24 months.
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Len
Thank you, that is very reassuring 😊
My hem/onc and I decided on V+O as a treatment plan. I then met with a CLL specialist who said that if I'm TP53 mutated, he would not recommend V+O, but maybe go with A+O. I'm still waiting for the results of my TP53 test. I want a defined duration treatment, so I'll be disappointed if V+O isn't a recommended option.
Is your Dr a CLL expert? Rationale: My husbband is TP53 muted and he is on A&O and V. He just finished is O treatments. My husband is doing fantastic and next month he is scheduled for a bone marrow to see how well he is doing. In the beginning he started with A and the following month O and after 3 months his CLL decreased from 90% to 60% throughout his body. With a recent blood test "it was determined "normal""!
Hi, I’ve been on Venetoclax monotherapy since April 2018 and it’s been hugely successful. I was originally on a clinical trial which finished last year but I’m continuing to take Venetoclax until further notice. I’ve been in remission since November 2018 and been taking 200mg daily since then because I had side effects — neutropenia and diarrhoea. I’ve been feeling terrific and, if Covid hadn’t reared its ugly head, I’d still be undertaking overseas trips. I haven’t done that since December 2019. 🥲. Go well.
I finished the 12 month treatment plan for V+O in April this year. With SLL I had a very swollen lymph node on my shoulder which, after the first two weeks of O went down to nothing. The only real problem I had was diarrhoea, which can be a bit tricky on a bike ride....
Otherwise I didn't stay in hospital at the outset because I have a sick wife to care for. Stuck rigidly to the instructions regarding medication, drinking water etc. Within weeks I was travelling to the hospital 10 miles each way on my bike. Even thought of running it but didn't pursue that. Bit of hassle initially because of the numerous blood tests etc. When I went in I always took my own food ( cold pizza!) and a flask of tea made with ginger and spearmint. Not sure if the latter did any good but it was lovely to sip. Had some books and videos on a tablet to while-way the time.
For me, whilst I stuck rigidly to the drug regime appts etc, I took every opportunity to be in control of my environment - in any medical setting it is far too easy to become institutionalised.*
*on this side of the pond we spell it with an 's'
This is how my venetoclax induction went:
healthunlocked.com/cllsuppo...
My only "advice" is, if you have GI problems after ramp up, play around with taking the drug late in the day, vary the foods you eat to see if that affects anything, and experiment with taking it slightly after eating, instead of with the meal. Also note that some people successfully do a dose reduction down from 400mg if side effects couldn't be managed otherwise.
Thank you, sorry you have had such a torrid time of it😞 I hope everything goes well in the future.
I thought this went rather well! I didn't get neutropenia/sepsis, I didn't need infusions from low hemoglobin or platelets, and didn't have nausea to the point of throwing up, so IMO it was pretty easy!
That’s good to hear 😊
Yes, some folks have difficulty and even get hospitalized for serious problems. My hospitalizations were more "prevention", and the first week induction "extended stay" was treating the results of massive CLL cell lysis, but I never was in any potentially serious danger, and I didn't feel awful/sick. Others here have had much more challenging problems at the early stages of their treatments. Even though my variant is hard to treat, and I have had failures and problems, I have had only 1 treatment that made me acutely uncomfortable. Some folks seem to sail through everything, others have every problem imaginable. I just try to be prepared "if" something occurs, so I won't waste time figuring out what to do, I already have a plan.
I finished 2 years of Venteclax in December. I'm in a "partial remission" now. Venteclax was an amazing drug for me! Best of luck to you
Thank you 😊 Glad to hear you had such a great experience!
I found that if I took V with or just after a fatty food I didn't get nauseous.
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