observe and act

[Omaschnabel]

Hello, I'm (female, 52) new here, I got my diagnosis in 2018, maybe I can still learn something here.

Because I don't just like to watch and wait

[GMa27]

I loved being on W&W. 12 years for me. I felt great...after the initial shock, my hematologist said to just enjoy life. I was 52 then. At 64 I had treatment and doing fine. If you are feeling good...just get your check ups and try to put it aside. My Dad had it for 30 years. He never needed treatment. Always get a second opinion especially from a specialist when you are near treatment or have any issues. 🙏💕

[Omaschnabel in reply to GMa27]

Thank you for your answer :)yes - I also don't like to have symptoms or problems, it's just the term I don't like...

interesting with your dad, it gives me hope.

Best wishes for you!

[cajunjeff in reply to Omaschnabel]

Haha Oma. Watch and wait is among many terms I don’t like including Cll, 17p, mutated Cll, unmutated Cll, chemo, FCR, and hemoglobin. For those of us who want to be informed on our disease and treatment choices, we have a whole new glossary of words and acronyms to learn we all wish we never knew.

Why we have the watch and wait paradigm is a frequent topic on here as it is very counterintuitive to learn we have cancer and then wait to treat it. We all grew up thinking it is critical to our survival to catch our cancer early. Those of us in watch and wait for ten years arguably might have been better off ignorant of their Cll for the past ten years.

To your “observe and act” point, however, one advantage of knowing we have Cll even though we are not ready to treat is that we can get very proactive with things like diet and exercise to stay in the best shape we can to fight our Cll when the time comes.

The watch and wait paradigm was clearly proven to be the best strategy in the chemo days where early treatment with chemo for Cll might even lessen survival by selecting for more serious strains of Cll by killing the easy strains and making more room for the bad ones. They are now looking to see if treating earlier with the new drugs may increase survival.

But as of now, most Cll doctors still wait to treat us because treating early has not shown any survival advantage. That could change with drugs like ibrutinib and venetoclax which might not select for worse type Cll clones in the same way as chemo. Some combination of these new drugs might even be proven to nip new and deadlier strains of Cll before they start.

[Phil4-13 in reply to cajunjeff]

All promising news! Sandra😊

[Jacksc06]

Hi. Welcome to the family. You probably have many questions ask away, the good people on this forum have a wealth of experience and will try to give you answers. A great place for support and friendship also. Best wishes.

[Omaschnabel in reply to Jacksc06]

Thank you Jacksc06

[SofiaDeo]

Like cajunjeff said, a great advantage to being in the Watch & Wait period is buying some time to optimize your health by diet & exercise if there's room for improvement. Also, if you are a Type-A workaholic like I was, cutting back on work/stress could improve your health too. And there is something you can start doing right now.....learn more about CLL, our moderators have awesome "pinned posts" that explain many things our docs don't have time to/we forget because it's all so new & overwhelming. Get copies of your labwork now if you haven't already & as you continue to be monitored, and ask questions about things you don't understand on your labwork.

In my case, I had abnormal bloodwork starting a good solid year & 1/2 before my (very aggressive) disease showed up. The doctors office made a mistake & never noticed the multiple lab flagged "abnormal readings" or had me in to talk about it, and in those days I didn't ask for copies of my labwork. I just trusted my doc. So I continued to work 60 hour a week often, push myself to physical extremes (high altitude steep mountain hiking/camping where we had to carry all our own supplies & even water in). Had I known about the abnormalities, I would have cut back on work & not done such severe exercise.

[AussieNeil Partner Administrator in reply to SofiaDeo]

The Pinned Posts can be found here: healthunlocked.com/cllsuppo...

[Phil4-13]

Welcome! Sandra😊

[Big_Dee]

Hello Omaschnabel

Unfortunately everyone is in some stage of W&W through their travels with CLL. I was in W&W for little over one year before treatment and now am in W&W to see if I relapse. Life is grand. Blessings.

[starfish51]

Hello, I was just diagnosed 2 weeks ago with CLL. I'm in total shock since I don't have any symptoms. Just my WBC and my lymphocytes counts are high. I did not get my Fish results yet. Looking for some opinions from this time on what is the general W&W until symptoms appear. Does having the Fish test tell you how aggressive your CLL is? Thank you for your support I'm glad I found this sight.

[AussieNeil Partner Administrator in reply to starfish51]

Your FISH test results are not as important as your IGHV mutation test result, with mutated status equating to a long time in watch and wait and a long remission, should treatment eventually be needed. About half of us are IGHV mutated.

If your FISH test results show you to be 13q del, that's actually better than not finding any deletions, misleadingly termed a "Normal Karyotype" result. 17p del is the least desirable result with the older chemo treatments, which in the USA you wont have to worry about. 11q del is associated with the development of bulky nodes and puts you into a poorer risk category. Trisomy 12 is mid risk, but that can vary considerably. Three or more chromosomal aberrations puts you into the risky complex karyotype category.

A good CLL specialist will take all the above, along with your particular presentation to assign you to the best treatment option, which may involve a clinical trial. We are spoilt for choice with new treatment options, which are constantly improving outcomes.

Neil