To continue or stop Venclexta treatment for CLL?

@normahorn
What do you do to keep immunity up?

Is there anybody with WBC 127 and loosing weight?
Did doctors suggest treatment and what treatment was suggested.
My husband’s oncologist still wants to «watch and wait:(

@sveta25 Am I understanding this correctly ,that your husband hasn’t physically been seen by a physician since his 2nd opinion at Moffitt, last November, as in a year ago?

Much can happen in a year’s time.

I would strongly suggest you call his oncology office, explain the rapid weight loss and insist on an appointment soon. They may suggest a CBC with differential, which will give a clearer picture of the composition of his white count.
Do you know if there was a peripheral blood smear or if he was tested for blasts in his peripheral blood?

@loribmt Thank you Lori.
My husband had a second opinion at MOFFITT last month, he is loosing weight, since 11/06 he lost 8 lb. I am trying to convince him to make appointment to see his oncologist hematologist before scheduled appointment in January 2026.
I wonder if anybody takes maitake mushrooms supplement?
I’ve read that it helps to promote recovery of leukocytes.
How to find out if it’s the case?
P.S. I was wondering if you are a patient or a medical professional, can I tell doctor that this test was suggested by Mayo clinic?

Hi @sveta25 Ok, I misunderstood, I thought it sounded as though it was a year ago that your husband was seen. What did the 2nd opinion doctor feel about the diagnosis and waiting for treatment?

Regarding the supplements of mushrooms…or any supplements right now. It is better not to take anything that your doctor hasn’t approved. Especially with blood cancers, many supplements can impact our blood such as interfering with clotting, interfering with efficacy of medications. Supplements aren’t regulated or tested in compliance with standard testing. There isn’t much of a data base with statistics available for drug interaction. Also, many supplements, no matter how innocuous they seem, can build up toxic levels in the body, harming organs such as liver and kidney. So for now, from my own experience with having an aggressive blood cancer, please avoid supplements until speaking with your husband’s doctor.

I’m not a medical professional but I am a patient of Mayo Clinic, having received a bone marrow transplant for Acute Myeloid Leukemia 6 1/2 years ago. Through that experience I gained a wealth of first hand knowledge from my incredible transplant team at Mayo and my local oncology team; Both are supportive with my mentoring involvement. While members in the forum aren’t able to diagnose or prescribe medications or offer treatments we can use our knowledge to help others by sharing our experiences.

I know you’re getting desperate for answers because you see your husband’s health waning. Even though his doctor has suggested he remain in active surveillance it doesn’t mean things haven’t changed since his last visit. CLL has certain parameters that doctor’s use as guidelines to begin treatment. Your husband may not be fitting into that ‘box’…Blood cancers are tricky and don’t always follow hard and fast rules.
If you’re interested, here is the type of guide physicians can use to help judge when it’s time to treat:

From Lilly Medical: https://medical.lilly.com/us/diseases/assets/vaultpdf/en/ea78f8a2812b01bf55854de071f2ed63b7b6cdbbfacf80c4d2ed637fe33672a6/clinical-decision-making-in-cll-when-to-stop-and-start-treatment

You’re concerned…that alone can warrant a phone call to his doctor! It’s ok to do that! If you feel your husband shouldn’t wait for another month before being seen, call his oncology office! From my personal experience with my transplant team at Mayo and my local, hometown oncology team…when I called with a concern, they squeezed me in!

The test I asked if your husband had, was a CBC with differential. It means that the lab also counts each different type of white blood cell and immature (not-yet-fully-developed) blood cells: neutorphils, leukocytes, monocytes, eosinophils and basophils, immature granulocytes, etc..
He may already receive those as that’s pretty standard for blood cancer patients. But a peripheral blood smear would show if there are blast cells in his blood. Do you remember seeing that?

Hi @sveta25 Ok, I misunderstood, I thought it sounded as though it was a year ago that your husband was seen. What did the 2nd opinion doctor feel about the diagnosis and waiting for treatment?

Regarding the supplements of mushrooms…or any supplements right now. It is better not to take anything that your doctor hasn’t approved. Especially with blood cancers, many supplements can impact our blood such as interfering with clotting, interfering with efficacy of medications. Supplements aren’t regulated or tested in compliance with standard testing. There isn’t much of a data base with statistics available for drug interaction. Also, many supplements, no matter how innocuous they seem, can build up toxic levels in the body, harming organs such as liver and kidney. So for now, from my own experience with having an aggressive blood cancer, please avoid supplements until speaking with your husband’s doctor.

I’m not a medical professional but I am a patient of Mayo Clinic, having received a bone marrow transplant for Acute Myeloid Leukemia 6 1/2 years ago. Through that experience I gained a wealth of first hand knowledge from my incredible transplant team at Mayo and my local oncology team; Both are supportive with my mentoring involvement. While members in the forum aren’t able to diagnose or prescribe medications or offer treatments we can use our knowledge to help others by sharing our experiences.

I know you’re getting desperate for answers because you see your husband’s health waning. Even though his doctor has suggested he remain in active surveillance it doesn’t mean things haven’t changed since his last visit. CLL has certain parameters that doctor’s use as guidelines to begin treatment. Your husband may not be fitting into that ‘box’…Blood cancers are tricky and don’t always follow hard and fast rules.
If you’re interested, here is the type of guide physicians can use to help judge when it’s time to treat:

From Lilly Medical: https://medical.lilly.com/us/diseases/assets/vaultpdf/en/ea78f8a2812b01bf55854de071f2ed63b7b6cdbbfacf80c4d2ed637fe33672a6/clinical-decision-making-in-cll-when-to-stop-and-start-treatment

You’re concerned…that alone can warrant a phone call to his doctor! It’s ok to do that! If you feel your husband shouldn’t wait for another month before being seen, call his oncology office! From my personal experience with my transplant team at Mayo and my local, hometown oncology team…when I called with a concern, they squeezed me in!

The test I asked if your husband had, was a CBC with differential. It means that the lab also counts each different type of white blood cell and immature (not-yet-fully-developed) blood cells: neutorphils, leukocytes, monocytes, eosinophils and basophils, immature granulocytes, etc..
He may already receive those as that’s pretty standard for blood cancer patients. But a peripheral blood smear would show if there are blast cells in his blood. Do you remember seeing that?

@loribmt How did you become patient of Mayo Clinic, did your oncologist give you referral?

Hi @sveta25. My hematologist oncologist called the Mayo Clinic-Rochester to discuss my case with a transplant doctor. I was currently in my local hospital (for 5 weeks) undergoing treatment for AML. Being high-risk for relapse left no other choice (at the time) but a BMT. My case was accepted immediately and several months later my husband and I relocated to Rochester for 4 months.

You mentioned that your husband, with CLL, had a 2nd opinion at Moffitt, which is a respected cancer center. Was their opinion in line with your husband’s current doctor? I’ve given you a lot of information over the past few days regarding his ongoing weight loss and your concerns about not waiting for a month more before he sees his doctor. It’s really ok to be the squeaky wheel if you’re having a ‘spidey-sense’ that things aren’t right! Have you called his doctor’s office yet?

@loribmt Thank you Lori very, very, very much for all the information you’ve given me.
He wants to wait till his January 6 appointment at Florida Cancel Specialists, this time our DIL will join us
and maybe she will be able to ask right question and be more insistent than me. I feel like I am not doing enough and am not asking right questions.
I wish his doctor would be as diligent as yours and would suggest Mayo clinic.
PA at MOFFITT said the same thing as my husband’s
oncologist in Venice FL, however it was a month ago and he was not loosing weight as much.
God bless you for helping and being my moral support.
Wish you a Happy Healthy holidays.