'Watch and Wait' - an anxiety provoking label??

[Dyzzie22]

Hi, I'm fairly new to all this but can completely understand the anxiety that this disease causes - I honestly can't help thinking that the term 'watch and wait' just compounds the anxiety for those at this stage. Language can be a powerful determiner of how we feel (thoughts, feelings, actions cycle) - has anyone ever suggested to the medics that its not the best of labels to give to a group of people - it just suggests to me that we are waiting for something dreadful to happen. I don't know - maybe something like 'Monitor and Report' would be better. I'd love to hear other's thoughts about this.

[lankisterguy Volunteer]

Hi Dyzzie22,-

Some call it "Active Surveillance" or variations on the theme. The tongue in cheek version is "Watch & Worry"

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Here is a Pinned Post that may help: healthunlocked.com/cllsuppo...

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Len

[Sushibruno]

"Active surveillance" is the new one, to be honest it doesn't make me feel any less anxiety.

[Bikram21]

Watch and wait to me means – I may never need treatment! X🙏

[GMa27]

Loved hearing that term. Most of my friends get cancer and 2-4 days later they are either in surgery or getting chemo/radiation immediately. My hematologist was so caring, calm and reassured me to just go out & live. After 3 months, I took her advice. I was on W&W 12 years before I needed treatment. Any term means the same. You can use whatever term you want that makes you feel better. W&W was never mentioned after my first visit after dx. Every 4 months she would just say good results, nothing to be concerned, see ya next time.

🙏💕

[seelel]

I'm not sure that the word 'wait' is particularly helpful to the situation. 'Watch' or 'Monitor' are accurate, but what are we waiting for? Nothing might happen or something might happen, but where is the need to wait for nothing or something?

I agree - W&W is an inappropriate term to use in a clinical setting. It's more suited to someone sitting on a riverbank fishing.

[Dyzzie22 in reply to seelel]

You’re comment about fishing made me laugh, my husband’s a keen fisherman but rarely seems to catch anything, lots of sitting and waiting for him 😁

[CguLLer]

I prefer the term Watchful Waiting. Almost the same words but it just seems to be a more positive of saying it.

[G1llHa1n]

Active monitoring seems to be the more favoured 'modern' term in the UK now.

[al444]

Hi , take easy don’t think about it eat healthy green vegetables and citrus fruits do body movements as much as possible avoid crowded place just for the covid .

[LeoPa in reply to al444]

My ancestors never saw a citrus fruit in their lives 😀 but if they grow where you live,why not.

[stevesmith1964]

I feel for you. I was extremely fortunate as I had no watch and wait.... went straight to Obinatuzamab and Ibrutinib at diagnosis.

[Psmithuk]

Another one - heart failure- impending doom?

[LeoPa]

I suggest WDW. Wait,don't worry 😉

[Vizilo]

I agree with your observation whole heartedly. I remember my first meeting with my cll specialist 7 years and 5 months ago (but who’s counting?) where he basically said: “you have cll, your numbers are somewhat elevated, we check back in 6 months, don’t worry about it, treatment is a long way away, and there are lots of new treatments in the pipeline.”

He never mentioned watch and wait but just hearing the diagnosis changes the way we look at things forever. For some of us, the diagnosis brings a lifetime of daily worry (sorry, wait)

[wizzard166]

Hey Dyzzie

I fully understand, and when I heard Watch and Wait I was truly pissed off. I was new to this site and started posting about how ridiculous the concept seemed to me. My immediate analogy involved American Football, which some of you in London and surrounding UK can finally relate to; now, that there are a few annual NFL games played in London.

Imagine the other team has the ball and begins marching toward the middle of the field. Your Head Coach has kept his best Defensive Players off the field. As the enemy continues marching toward your territory, those great Defensive Players on the bench keep looking anxiously toward the Head Coach. He ignores them. Then the other team crosses the fifty into your territory, and the good Defensive players, start to beg the Coach to put them in to stop the enemy. Coach waves them off and says, no lets Watch and Wait. Then the other team continues forward toward your end zone, and enters the "Red Zone". The Red Zone is between the twenty yard line and the End Zone. Red warning lights are flashing and the enemy is gearing up to put you away. Finally the Coach waves to his top Defensive Players and says: "OK boys go in there and try to stop them from scoring".

In real life Football no Coach trying to win the game would keep his Defense on the sidelines, while the enemy is marching toward their end zone. That would be insane. But in the world of CLL that is the game plan. So when I heard this Watch and Wait game plan, I of course was mortified.

Now a few years later (April is four years post diagnosis for me), I finally understand. The dangers of treatment can be almost as bad as the ultimate dangers of the illness. Fortunately most people on treatment don't have the very serious side effects, some of which can be fatal. So the concept is to get as close as is possible to our illness actually endangering our lives, and then attack it with the Novel Targeted Therapeutics. So now I get it, and truthfully hope I never enter treatment. I could very well live out the same number of years I might have had anyway, and never reach the point where the CLL is close to endangering my life. On this site now over four years, I've learned how many of us can go over ten years without starting treatment. I even know someone not through this site, who has CLL for around twenty years without treatment.

So the words Watch and Wait don't bother me. With a true understanding of this illness now, I'd be fine being continuously told by my CLL Specialist every six months that she will keep me on Watch and Wait.

Carl

[G1llHa1n in reply to wizzard166]

Around a third of CLL patients never need treatment - I'm intending to be one of them if I can. The earlier people start treatment the closer they tend to be to their next. For some people treatment is essential sooner and that is a different matter. If there is a preventative developed then some of us would change our approach and hold other options in reserve. So far I'm in year 9 of active monitoring . . .

[wizzard166 in reply to G1llHa1n]

Hey G1

Glad to hear you are nine years into W&W. I hope you can live out your life with little effects from having CLL, and never have gone onto treatment. Early April I'll be four years into this trip, my WBC started around 16,000 at Diagnosis, and on my last six month visit in Boston I was up to 92,000, Really strange thing is then three months later I was down to 45,000. I seem to have these spurts that then reverse back to more reasonable numbers, but this drop was extraordinary. Once before in January 2020 I had spurted from 30,000 three months earlier to 45,000, and then a few months later I was back down to 35,000. I think my spurts are from having had a bad cold for a few weeks prior to the blood testing, even though the testing came two weeks after I finally beat the cold. Other than those things, all I feel is a lot of weakness on a regular basis. I also get these heavy sweats at night, but my RBC and Platelets are doing fairly well.

We'll see how I progress on this upcoming six month visit to Boston on my 75th birthday. I'm hoping the WBC stayed in a reasonable range around 50000 +, instead of another burst back up to the 100,000 area. Once again however I've been very sick for the last two weeks with COVID. Fortunately I had access to Monoclonal Antibody Infusion a week prior to this past Saturday, and that seems to have beaten the COVID back a lot. I tested negative on Sunday Morning, but I still have minor stuffy nose and am very weak and tired. But if I stay well from now until March 30 in Boston, maybe my WBC will be back down. I know by the way that the technically important cells to monitor are the Lymphocytes and not the total WBC, but in reality for an advanced CLL person those two numbers are very close together. My Lymphocytes were 80,000 when the WBC had hit 92,000, so in essence the rise and fall of the WBC is equally as relevant.

Good luck my friend.

Carl

[G1llHa1n in reply to wizzard166]

I get how worrying all these things must be. Hopefully they will settle down - and, if not - the newer treatments are getting really good reviews and if it comes to that point one of them will surely have your name on. Sometimes knowing which course you are on does gives a feeling of knowing what challenge you are dealing with and in the meantime the toughest one can be handling uncertainty.

Do take care of yourself and thank you for your good wishes.

[CBeauty]

I am with you...especially because it sounds so passive. My inner dialogue was "watch...and in the meantime take superior care of yourself!".

Cleaned up my diet, more aerobic activity and lots of yoga. I still stand by yoga (or any form of gentle, meditative and breath oriented body movement) to give you an edge on avoiding muscle or joint pain in the future. And of course for the here and now.

[Dyzzie22 in reply to CBeauty]

I like your inner dialogue - I too am an avid yoga follower it’s kept me going in the last few weeks when I’ve felt pretty stressed. I also walk daily, large dog who needs exercise gets me out 😊, and I’ve set myself targets to increase the distance I go. Thank you for you’re positivity x

[Newdawn Administrator]

I feel that as long as CLL remains ‘treatable but incurable’, we are permanently on active monitoring. I’m on the final two weeks of my trial meds and have thankfully been uMRD for quite some time but each time I go for a consult, there’s still the anxiety of if/when the next treatment may be necessary.

In truth, I think W&W Part 2,3,4…feels way more scary! 😳

Newdawn

[Shepherd777 in reply to Newdawn]

My wife has been in remission now 38 months, but every 3 to 6 months I sweat it out what the next blood test will say. She does not worry about it, and I do not either until the blood test and then the worry starts for me for a week until we see the results.

[Dyzzie22 in reply to Newdawn]

Yes I can appreciate that, I hope things stay stable for you.

[Ironj]

I look at it this way , when I think about this chronic condition , Its just like diabetes , high blood pressure Lupus. I don’t reference it as watch and wait for the same reason you’ve referred to it. It’s a blood condition that may need treatment someday maybe never. I call it just monitoring just like I monitor my Type 2 Diabetes.

Make your own word to cope with it as it is a very treatable condition. I don’t tell people I have cancer because I don’t personally view it as that. I view it as a blood disorder that a pill will take care of it if I ever need treatment.

John

[Dyzzie22 in reply to Ironj]

Yes, apart from family and close friends, I’ve started telling people that I have a blood condition that affects my immunity, but no other symptoms. I can’t cope with peoples sympathy, and don’t warrant it as in all other respects I am fit and healthy.

[Chemtrails-USA]

Dyzzie -

I feel ya! I prefer M&M - “Monitor and Move on”.

It eliminates the haunting implication of W&W - of the other shoe dropping; the imagery of someone wide-eyed fearfully looking over their shoulder. And who doesn’t like M&M’s??

Hang in there.

- Bobby

[Dyzzie22 in reply to Chemtrails-USA]

We’ll maybe just a few on my healthy diet regime 😉