New to site looking for advice.

[120940]

Hi new to this site. When does the doctor decide to treat you if you have cll/all with 13 q

My husband tried to get in a clinical trial with acp196. Acalabrutinib. It is a new drug related to ibrutinib. This is a pill form that has less side effects .Now we are waiting for

treatment.

We are moving and will start with a new oncologist / hematologist. His WBC is 64. His only symptom is enlarged lymph nodes around his neck.

[Annaryp]

Google search AFP 196 clinical trials. Lots of info. Spouse has been in trial since end of September with amazing results. We live in sw Florida where there seems to be a variety of options. I am sure many will respond with more detailed info and advice. Good luck and have a great morning!

[mgh348 in reply to Annaryp]

Hi, what trial is your husband on? Please expand on his amazing results. I'm on a trial of ACP 196 at Mayo in Jacksonville for 2 months. Still have lots of fatigue and sometimes brain fog in the morning.

Thanks,

Maxine

[Annaryp in reply to mgh348]

Hi Maxine. Acp196. Started end of sept after 6 wks of failing health. Diagnosed 12 yrs ago but managed to avoid treatment through alternatives not approved by most states. His bone marrow WHite cell count shot to 99% and WBC to 278k before he became symptomatic. The acp has brought WBC to 107k and he has gained back 30 of the forty pounds he lost. Not fans of chemo or big pharmacy but did research and found acp to be the best option. Got lucky because fl cancer centers were approved for phase three of trial right as his health sank. The fact that he never was treated was a significant factor too. So he suffers no side affects. Minor gastric issue first wk but no longer. He twice dev mouth sores but nothing more. Again. Thought he was going to die two months ago he was that bad. He returned to work last week and goes to the y for 90 mins just about every day. We are down to monthly visits for blood work and refill on meds. Ct scan this week to make sure all is in order.

Finally. I know he pushes himself I see the fatigue and morning confusion. I am a slightly hyper person so make sure my behavior is not making him push himself too hard. He is motivated by the loss of six weeks at end of summer when he could not get out of bed refused food and thought he was dying. I am still amazed and thankful for transformation

We live south of Venice. In rotonda the boondoggle of ed Mcmahon circa 1972. Worlds biggest crop circle when seen from the sky. Originally from NYC. Queens to be exact. Spent years in Saratoga co before moving to Florida. Came to help out ancient parents. Stayed because it's a pretty nice place to live this time of year. Be well. Keep in touch

[Leshere]

Welcome to this site I am quite new too and till having diagnosis. When to treat is very much dependent on the individual response. They may not decide to treat yet but leave on W & W. The ALC does not look as though it is sky high and there are limited symptoms. However I assume a FISH test has been done which is a tool used to help define treatment and , since this disease changes and shifts, is normally done just prior to treatment. DO you know what the ALC doubling time is?

It is great that you have dropped in here and some of the resident experts will be by shortly to offer suggestions.

Les

[Newdawn Administrator]

Hi 120940,

With limited information about your husband's CLL stage, I'm wondering why he's considering the need for treatment at the moment. Are the lymph nodes around his neck becoming intrusive or affecting breathing or swallowing etc? The numbers alone are rarely a stand alone reason to start treatment but perhaps it's the possibility of the trial he finds appealing at this stage and doesn't want to miss the chance?

I find this article very useful in explaining the prompts to be thinking about treatment but there's also the psychological issue of feeling ready and wanting treatment which needs to be factored in and discussed with the specialist. I'd just caution against rushing into it if the clinical need isn't there. Hope this link helps;

cllsociety.org/2016/03/cll-...

Newdawn

[nkferg]

Like! Agree 100%.

[120940]

Thanks for your information. Yes he saw a cll specialist. He was going to mdanderson. He was going to participate in a clinical trial for ACP 196 but that same day they said that he was not chosen. We were disappointed and came home.

Where can I find the mutated information? Is this in the molecular diagnostics?

[Cllcanada Top Poster CURE Hero in reply to 120940]

IGHV mutation status has two surrogates CD38 and ZAP70. They are not as good as a direct IGHV test but they have about a 70% accuracy... cut off percents are 30% and 20% respectively... under...mutated over unmutated...

Both would be on the flow cytometry...

IGHV@ has many stereotypes and these have a very strong bearing on CLL, but they are rarely tested for outside of research unfortunately...

Decent bibliography

en.m.wikipedia.org/wiki/IGHV@

~chris