Time to start treatment?

[Elam]

In W&W for about 18 months. My WBC has risen to about 115 but I have no significant symptoms. Most of my counts are not bad and some are improved (rbc up) Doc talking treatment but I am hesitant. Thoughts?

[Cllcanada Top Poster CURE Hero]

Counts are only part of the when to treat puzzle... as is age and overall health, comorbidities and so on.

You might want to get a second opinion, it's quite common in CLL, since it is rare and not all doctors are current on the disease managementand so on...

I have known CLL patients with white blood cell count [WBC] over 300K and work every day...

How you are feeling is important as well.

~chris 🇨🇦

[Elam in reply to Cllcanada]

Thanks.

[AussieNeil Administrator]

As your doctor specifically why they consider you need treatment and seek a second opinion if they aren't in line with the guidelines covered in this pinned post:

healthunlocked.com/cllsuppo...

I hope your WBC count is not the reason per this post: healthunlocked.com/cllsuppo...

Neil

[GMa27]

Definitely second opinion. If you don't see a specialist/expert...that doc should be your second opinion. You may need FISH/Flow repeated. Some cases require scans and BMB. I felt great but was getting anemic and my marrow was crowded. I needed treatment. 💕

[Coolerjoe]

Hello Elam,

I have been on W&W for just under 24 months. My WBC is now 150 ALC 72. I feel fine occasionally tired but I work in the construction field so who knows if that is the issue.

My Hemo is a great guy and has stated he wants to hold off as long as possible before treatment. That being said he is concerned about the increases in my counts. I was dx with 35k WBC. He has done a fish test early on. Just sent me for a CT scan a week ago. Some lymph nodes but none to be overly concerned about. He has suggested I go see a colleague of his with Robert Wood Johnson Medical Center who is a CLL specialist. Have that appointment next week. Was sick with a cold that turned into bronchitis. 14 days of prednisone. WBC dropped to 143. still shaking the remnants of it. As most of the group will say to you it is never a bad thing to get a second opinion. My Hemo says that I am headed in the direction of treatment. I am not there yet but he wants to have a action plan in place for when I do get there. Keep the faith and do as much reading as you can. My wife has gotten on board with this and is my best advocate now. She reads and studies and uses me as the test subject with food changes and such lol. All the best and keep us informed on your progress.

Joe

[AussieNeil Administrator in reply to Coolerjoe]

Can you confirm your WBC and ALC? Your ALC should be just less than you WBC, not half it! You can edit your nostalgia the "More v" under them. Good to see your action plan.

Neil

[shoshanaz]

I second those who recommend a second opinion. While it is fine to discuss treatment options that might be available down the line, we don't have any current evidence that early treatment makes a difference if you are asymptomatic. In the time between now and when your CLL symptoms/counts call for treatment, guidelines can change, and those should affect which treatment is recommended. A doctor who is focused on CLL will be more aware of those, as well as what options you have. This is a great time for you to learn as much as you can about the options most readily available, and even about investigational studies, if you are inclined to consider them. It is fine to question doctors on why, when and what they are recommending for treatment. It is easier to do that if you are very informed yourself. Happy to hear you are feeling good overall, and hoping you don't have to deal with any more infections.

[Elam in reply to shoshanaz]

Good advice. Thanks.

[patagozon]

My hem-onc always tells me "we treat the symptoms, not the numbers". He has me convinced. When my WBC/ALC doubled over the last year, he wanted me to come in after three months, not my normal six months. I told him I felt fine with no symptoms and my Hgb and Platelets were well within the reference range, so let's stick to the six month schedule. He agreed. He may taught me too well.

[larrymarion]

Others have noted the need for a second opinion from a CLL expert, which I strongly urge you to do. ( I went down the treatment mode with traditional chemo in 2010 and 2013 and have been on ibrutinib for 5 years.) Other diagnostic factors for you to get information on as you and your docs think through your treatment plan:

1) other than a rising WBC, what blood markers have been associated with your case? for example, are you 11q or 17p deleted? Unmutated? complex karyotypes? If the answers to these questions are yes, you are probably considered a high risk case (I am/was high risk and these factors/indictors are a selection from a large group. FISH and flow cytometry test results are crucial--make sure you get those tests and understand the results).

2) the current thinking on W&W is evolving, though the guidelines remain the same. The recent ASH meeting had experts talking about the legitimacy of treating high risk patients with the novel agents (ibrutinib, venetoclax, acalabrutinib, etc.) when physical symptoms arise, rather than waiting until they are intolerable. For example, if your spleen starts growing and causing discomfort. Or a lymph gland in your throat partially blocks your esophagus.

3) the novel agents offer a variety of mostly tolerable side effects but be sure your hemocs give you a full description of what can happen.

4) For many people the biggest and most troubling side effect is financial toxicity--insurance may or may not cover all of the extremely high costs. Before making any decision make sure your docs ask your insurance company how they'll handle the $14k/month cost of some of these drugs.

Good luck. the good news here is that there are so many treatment options that can lead to a positive prognosis. Stay strong and keep in touch.

[Elam in reply to larrymarion]

Thanks. Very good advice. I am 13 a deleted and mutated, so I do not think considered high risk. My ALC has gone from about 15 to 58 in about 18 months, so that is a concern. But my platelets at 215 and hemo. at 12.8 are holding steady. I am probably going to seek out a specialist.

[larrymarion in reply to Elam]

you're welcome. i agree that your indicators do not look like high risk at this time. as bsv39 says, everyone is different. definitely need a second opinion before having treatment. FYI, before i began treatment i had a second and a third opinion from two leading CLL experts. don't be shy about this.

[Bsv39]

I was on w&w for 18 years. I just started treatment three months. I was 52 when diagnosed and my wbc went up and down during that time with no other problems. Everyone is different. I wish you the best

[Newdawn Administrator]

You definitely need a second opinion Elam!

Good luck,

Newdawn