watch and wait (!?)

[ybird]

Again, thank you all for even reading my posts. But you have also given me new information and new hope. Not to be melodramatic, but to see some of you have been doing W & W for years is encouraging, and that those of you on treatment, also appear to me to be very positive and proactive.

I think Watch and Wait is a stupid term. Wait for what? yes, I know, symptoms or labs that say start medical intervention. But the idea of waiting, which implies it's gonna get you sooner or later and there's nothing you can do about it, is maddening.

I've already mentioned my proactive steps and I have to believe that I"m stronger in mind and body for it.

Now, I need to ask you guys: About the labs (CBC auto differential). Every six months now for 5 times, and the only concerning thing (for me) is continued low WBC and platelets. I've always been at the low normal for WBC and platelets are just a bit over bottom normal. Which are the ones that tell you it's getting closer to treatment? Yes, I know WBC components are important lymphocytes and. neutrophils, etc. But how should good numbers look. And I know each lab has a different 'normal' reference range. Also I haven't had a ct in two years except for the one 6 months after official diagnosis of indolent CLL/SLL. That CT showed "minimal growth" since the one a year before. During those 6 months, I cut way back on sugars and starches and started doing some work on my emotional/mental habits. That minimal growth after 6 months of proactive, compares to lymph nodes doubling in size the year before diagnosis. So, again I think W & W is garbage talk.

thanks for listening.

J

[annmcgowan]

Hi I agree with you re the watch and wait for me it always implied treatment is coming. This is not the case for all of us. One third of the CLL/SLL population never need treatment. I did 6.5 years in but I would still have preferred it was called monitoring which is of course what watch and wait is.

Ann

[lankisterguy Volunteer]

Hi ybird,

You are not alone in resenting the term Watch & Wait

The CLL Society recently included this statement in the June Bloodline:

cllsociety.org/2023/05/june...

THE BASICS: Watch and Wait or Active Surveillance

The first treatment for about 95% of CLL patients is “Watch and Wait”

or as we prefer to call it “Active Observation” or “Active Surveillance.”

We are working to change the term in order to suggest a more active approach. Patients often still call it, “Watch and Worry”. It is at first glance one of the most counter-intuitive concepts in CLL. With many types of cancer early detection is critical with the prognosis getting worse with more advanced stages of the disease. That is the philosophy behind routine PAP smears, mammograms, colonoscopies, PSA and skin check: catch the cancer early.

-

Len

[Big_Dee in reply to lankisterguy]

Hello lankisterguy

I think, "The first treatment for about 95% of CLL patients is “Watch and Wait”, is not a treatment. I like Wait and Worry. 😅

[Thursday45]

Yes, I agree. It sounds like defeat before we have even started - just waiting for the inevitable when there is plenty we can all do to address life-style, nutrition and exercise. We need a new mantra. Any ideas?

[CoachVera55]

Hello Ybird I put CLL out of mind, just so confident that I’d be in that 30% not needing treatment🤷🏽‍♀️ I was stable 2009-2019 for 10yrs. It was a Watch & Confirm Time for me. I barely slowed down even; 2 jobs, traveling with my children 2-3 times per year. I had a home & a Condo to rent. A very active social life so I was cautious but living my best life at the same time.

Now did you say that your Plts & WBCs are low? Well normal is all numbers within normal ranges! I really did not research my disease so I am learning with all the newbies as well. When I say I put it outside my mind, that’s what I mean. So my own brainwashing (strong belief) had a tremendous effect on not stressing about something I theoretically can do nothing about. A Church Sister reminded me that any treatment you chose for treatment of CLL is just a tool. Unless GOD blesses you to be here one more day then you won’t continue to exist. So as far as having low WBC did the disease doesn’t seem active, which is great. But if Platelets are low too that’s not good.

What I heard & understand is that when the disease is active then WBCs are doubling within 6 months. Then there can be spleen enlargement causing discomfort. Increased fatigue, Night Sweats, unexpected weight loss, etc are the usual signs. It could be 1 or all of them to a degree. I became very aware of my body. If something was off I would jump on it quick & resolve it. Our journeys are all different but we stand in support of you, you are not alone. #GODSPEED🙏🏾

Indications for Treatment

[wizzard166]

Hey Ybird

When I first joined this group about five years ago, my first post was how stupid I felt this Watch and Wait idea was. I compared it to a Football Coach who kept his best Defensive players on the bench at the start of the game, and as the other team scored a few points here and there they begged the Coach to let them in the game. Then it reached the 4th Quarter and the score was close and the other team reached the Red Zone (close to scoring again). Finally the Coach looks at his All Star Defensive players and says: OK go in there now and try to stop them. I was really pissed off five years ago.

Within a short time however the wise members on our site educated me to understand that Treatment can have dangerous side effects; whereas, lack of treatment doesn't hurt us much in terms of overall survival chances. So the concept is don't risk hurting ourselves, until it is really necessary; then, just hope the treatment works well with our particular genetic makeup. So I relaxed with the idea of W&W.

In fact today I have said on our site a number of times, that I hope I never leave Watch and Wait. If I can make it to whatever my expected end of life was to be anyway, without ever risking treatment, then my attitude has been that I succeeded. We'll see what happens, and I may be getting closer due to a very big Spleen, but maybe I'll still go the Route.

Carl

[G1llHa1n]

Don't particularly like the name - active monitoring seems to be the preferred name now. Being on my tenth year of it seems better than many of the alternatives. I'm hoping it's the indolent variety which the specialist who diagnosed me also said I might be in the third of CLLers who never need treatment. 🖖

[Big_Dee in reply to G1llHa1n]

Hello G1llHa1n

I do believe you have hit the nail on the head, I like "active monitoring". Blessings,

[mdsp7]

And yet, I like watch and wait. I feel sort of like I am out in nature, watching and waiting for a special bird or other beautiful creature to appear. We all have our own take on how language affects us, I think. Good luck to each and every one of you.

[lexie]

I like watch and wait because it is fast and easy to type W&W and everyone knows what the acronym means at this point on this site. When I refer to what I am doing CLL-wise in a person-to-person conversation with someone I say active monitoring. Since I haven't shared my diagnosis with friends or family it is usually medical staff I speak to and they seem to prefer active monitoring. I think active surveillance sounds more exciting like I might be a spy but once explained it would be such a let down so I stick with monitoring. I am flexible. 😁