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To continue or stop Venclexta treatment for CLL?
I was diagnosed with CLL in October 2021 at the age of 59. My Dad was also diagnosed with CLL @ 60 years old. His wait and watch timeline lasted about 20 years before requiring treatment. So, when I was diagnosed, I thought my story would be similar. I figured I'd wait and watch and not have any treatment for many years. In December 2022, my blood work proved that my wait and watch period was over and I was started on Calquence (acalabrutinib). I continued with that treatment until the Spring of 2023 and my Oncologist determined it wasn't working as we had hoped. He discussed transitioning to Venclexta (venetoclax) and I started in May 2023. I followed his strong advice and was sure to drink plenty of water and to stay hydrated. I have experienced minimal side effects (occasional tummy discomfort) and have responded very well to the treatment. I did require two blood transfusions over the summer of 2023 due to low red blood counts, but since then, things have been good. At my last oncology appointment, we discussed since I have been on this treatment for a year and am doing well, I could either continue the treatment or try and stop taking it. I have been told that if I do stop treatment and my blood work starts to deteriorate, I could restart treatment.
Since the treatment is working and I am not really experiencing side effects, do I just stay on the treatment? Or do I try to stop treatment and see what happens? My Oncologist said he supports either decision.
Just wondering if anyone has had the experience of stopping Venclexta treatment for CLL, and if so, what how did things go for you?
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Venclexta is a very effective therapy. I’ve been on it for many months along with infusions of Obinutuzumab and, yes, it works for me too. My only side-effects are daily nausea about 2 hours after taking Venclexta for which a take Compazine. It also severely suppressed my Lymphocytes and Neutrophils levels to point where I will need medication to boost those levels if they drop any further.
Realize there is no cure for CLL, and Venclexta is typically prescribed for about a year. The goal is deep remission and minimal residual disease. My thought would be to go off of it after a year and be monitored regularly for relapse. If it relapses, then go back on it or try whatever the latest first line therapy is. There seems to be new treatment discoveries on a regular basis.
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9 ReactionsHi @bostongirl, I hope you saw the helpful post from @fortunateoldguy. I'm also tagging other members like @dmc1937 @81ue @marytheresacll @sue58, who have experience with Venclexta (venetoclax) for CLL.
Bostongirl, did you decide to stay on treatment or take a treatment break?
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2 ReactionsAre you still on the pills ?
@koyemah, are you being treated from CLL with Venclexta? How are you doing?
My husband was diagnosed with CLL in 2023 and doctor still did not start treatment even though his WBC is 127 and his Hgb 12.5, he lost 15% of his weight in 6 month.
Doctor is still using watch and wait approach, I don’t know if we should worry that doctor does not start treatment? When did you start.
TYIA
@sveta25 Welcome to Mayo Connect! CLL is a form of leukemia that tends to develop slowly. It’s pretty common for patients to be in active surveillance or ‘watch and wait’ approach. Often doctors defer treatment until absolutely necessary. There is evidence that starting treatment earlier doesn’t benefit the patient.
I found a little information for you from the CLL Society website that discussion when it’s time to treat…
CLL Society CLL: Recognizing when it’s time to treat:
https://cllsociety.org/cll-sll-patient-education-toolkit/recognizing-when-it-is-time-to-treat/
There are also quite a few discussions in the forum with other members who have CLL. Here is one link for you:
Anyone have chronic lymphocytic leukemia? CLL?
https://connect.mayoclinic.org/discussion/anyone-have-cll/
You can find more discussions by typing in CLL or Chronic Lymphocytic leukemia in the top search bar.
Is your husband experiencing symptoms besides the weight loss?
Thank you very much, will look at the info you’ve sent.
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He lost 26 lb since January , he is sleeping more than usually. I am worried that by the time doctor will decide on treatment he will be too weak, he is 80 years old. He had lung cancer stage one, had surgery for that. Has really bad headaches.
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1 ReactionIn my short walk after being diagnosed, I'm slowly discovering that I had symptoms for a very long time, possibly at the time of puberty. This disease affects the entire body and organs. I encourage anyone who has this disease or any other, to educate yourself and pay attention to the details. You know your body better than anyone.
@sveta25. When you have concerns like this about your husband’s health and noticing that he’s getting weaker, sleeps more and continues to lose weight, it’s really important to talk it over with his hematologist/oncologist. Sometimes we have to be our own advocates for health and to push for answers.
CLL, while it usually develops slowly, it’s often that a person has had it for years without any symptoms. I don’t know what stage of your husband’s CLL or why his doctor is reserving treatment but you surely can ask those questions of his doctor.
Doctors tend to look for trends in blood numbers. It may be something such as, if your husband was only recently diagnosed, that there’s not enough blood results trending over time on which to base a treatment plan decision. So a few more labs may give them the trending numbers to confirm treatment needs to begin.
But no matter, I can feel your concern and honestly, if your husband doesn’t have an upcoming appointment soon for labs or a consult I’d call his doctor’s office or letter in the portal. It’s frustrating feeling as though you’re just sitting there spinning your wheels.
How often does he have labs?
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