To continue or stop Venclexta treatment for CLL?

@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?

@loribmt he has blood test every month now and CT every 6 month. I asked for PT scan but his hematologist said he does not need one even though his lymph’s are enlarged.

@sveta25 It sounds like you’re very frustrated with your husband’s hematologist that they are not doing enough to treat your husband’s CLL.

The continuing weight loss is concerning and having a blood cancer can contribute to this. That was my first, but unrecognized clue at the time of my diagnosis. Cancer cells demand more energy than healthy cells, so the body may burn more calories at rest than normal. Cancer cells also release substances that affect how the body uses calories from food. So that can lead to weight loss.
However as @normahorn mentioned maybe it’s not due to his CLL. Is your husband just not feeling well, apprehensive about his diagnosis so he’s not eating as much? Have you noticed a change in your husband’s diet or eating habits since his diagnosis? Just tossing those ideas out for thought.

A PET scan, from my understanding, isn’t routinely used for CLL patients. CT scans are used to check progress of disease or to see how well treatments are working. Your husband is still in the watchful waiting/active surveillance period with no treatment yet.
His doctor is requesting CT scans every 6 months to check for potential progress of the disease along with his monthly blood checks. Often, until CLL meets certain parameters such as pronounced symptoms, which your husband is having with fatigue and weight loss, or elevated lymphocytes in lab results. treatments don’t commence.

There may also be a hesitation in starting treatment to weigh benefits against possible side effects. Some side effects associated with medications such as nausea, diarrhea, constipation, fatigue, low blood counts, hair loss, anxiety, depression, etc., may be worse that the milder symptoms experienced during the active surveillance stage. As I found out myself, as we age, our bodies don’t metabolize or process/eliminate drugs as well as when we were younger so it becomes hard on the organs. All things his doctor may be considering before placing your husband on a treatment plan.

So gosh, I just don’t know what to tell you except to have another consultation with his oncologist. Make a list of questions and concerns so that you can go right down the list! My doctors appreciated having lists and didn’t mind answering my and my husband’s questions at all. It gave us a clearer picture of the whats and whys of my treatment along with letting my doctors know my concerns. We have greater understandings between us when the cards were all laid on the table, so to speak. It’s ok to ask questions.
You might ask if there’s any reason he shouldn’t start treatment if it could help with the symptoms.

Another option…have you considered a 2nd opinion?

@loribmt thank you for responding, support means a lot.
He did get a second opinion at MOFFITT in Tampa but we did not see doctor only PA( even though it was a purpose to go there) .
She also suggested Watch and wait but at that time he was not loosing 5 lb per month.

Hi @sveta25. If symptoms change, such as noticing a dramatic, continued weight loss, it’s certainly ok to make a call to your husband’s hematologist. I know this is a period of such uncertainty for both of you, as though you’ve had the rug pulled out from under you and now what?

I still think, for your peace of mind and to get some more definitive answers, call the hemo/oncol to have a consultation. A good source is the oncology PA or NP with your husband’s treatment center. They’re well educated professionals and often are more available, able spend more time answering questions in case an appt with the doctor is further out. The PA or NP, in turn, report to the doctor. I think you’d feel
better having spoken with someone, to feel that you’re being heard and concerns are addressed.

Maybe since the last actual face to face with the doctor /NP your husband’s condition has changed to where treatment is now a consideration. Blood work isn’t the only evaluation tool. Seeing the patient in person is part of the whole picture of a diagnosis. So it may be time for that visit.
When was his last actual visit with his medical team…not just labs?

While your husband has a high WBC, that can mask a count that would indicate an infection. My oncologist advised me to keep my immunity up. And our extra WBC are not the type to fight an infection.

@loribmt
His last visit with doctor was at the Moffitt ( for second opinion) last November, his blood test was on December 4, his last test showed WBC 127, since 12/04 to 12/11 he lost 3 lb, something is really going on and I think Watch and Wait approach is not working. His appointment with oncologist hematologist is in Jan. but I am afraid to wait another three weeks.