IGHV unmutated & normal FISH average W&W time

[nuji]

Hello!

Is there any statistics about IGHV unmutated and normal fish W&W period?

What is the longest time people with this combination have been on W&W or TTFT?

What’s the average time of W&W or TTFT for people with this combination?

Thanx in advance

[Ginajetta]

Everyone is different, I am unmutated, trisomy 12+, CD38, not good markers but thankful I was on W/W 11 years. Diagnosed 2007 and started in 2018. I saw CLL specialist who told me “yes your markers are not so good but don’t worry about it—just enjoy life. Early on I did take many supplements which were all ok with CLL specialist. When I started imbruvica I had to stop majority as they would interfere with imbruvica. Wish you long watch and wait. Now I must tell you early on I had seen several hematologist oncologists that wanted to start treatment. See a CLL Specialist.

[nuji in reply to Ginajetta]

Thank you very much. Unfortunately, I can’t find any CLL specialists in India. This forum is my go to for it 😀🤗

[Ginajetta in reply to nuji]

I am thankful I finally found Dr. Kanti Rai in NY. But now living in Florida and see oncologist who agreed to consult him. I just had virtual appointment with dr Rai yesterday. Actually virtual didn’t work so he called on the phone and talked with me. Maybe your doctor willing to consult with him. He is known worldwide.

[nuji in reply to Ginajetta]

Will surely try

[tekusa]

I am normal fish, and mutated IGHV. Diagnosed 2014 and currently have Lymphocytes in the 120 10E3 / uL range. Still no treatment but my family doctor is nervous with my high White Blood Cell count. My CLL doctor is watching platelets and hemoglobin which are 152 10E3 / uL and 13 g/uL respectively. When platelets get to 100 and or Hemoglobin gets to 10 I think that will trigger treatment. I feel OK (retired).

Quantification of Disease Risk

[nuji in reply to tekusa]

Thank you for your feedback

[tekusa in reply to nuji]

Forgot to add the bucket chart information.

Bucket Chart

[nuji in reply to tekusa]

Thank you

[AussieNeil Administrator in reply to tekusa]

Tekusa,Would you mind adding that bucket chart to these posts, along with some background to it?

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Thanks,

Neil

[Marthand]

Nuji you are right, because I am also from India specifically Bangalore and I've been going to an oncologist. Been searching for a CLL specialist. I understand finally that we need to go to a doctor who is experienced in treating CLL patients. Have you done the fish test?

I ve been on W&W since 2013

Take care

[nuji in reply to Marthand]

Thanx Marthand, great that you are on W&W. I’m normal FISH and unmutated IgHV. What’s your FISH & IGHV status?

[Marthand]

I haven't done those tests yet and got aware of it from this group. No doctor has recommended it to me yet

[AussieNeil Administrator in reply to Marthand]

The results of these tests only influence treatment choice. Further, FISH results can change over time. Hence the results are usually in the hopefully "nice to know" category for the patient before treatment discussions arise - which hopefully may never happen.

Neil

[nuji in reply to AussieNeil]

🤞🤞🤞

[Marthand in reply to AussieNeil]

Thanks AussieNeil!