Watch and wait : Watch and wait that’s what they... - CLL Support

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Watch and wait

Deniz2012
Deniz2012

Watch and wait that’s what they said when I knew I had CLL I want to know what am I waiting for what is it that I am going to find who cares to explain , been told to stay home and stay safe but there’s no explanation , if this Covid19 can kill me if I catch it why than when I had my 10 minutes telephone appointment with my doctor she didn’t even ask how I coped in the last three months being locked at home she was in such a hurry to hung up , just told me she’ll see me face to face in four months , I don’t want to wait any more please can some one explain what I am and million of others in my situation are waiting for

Is it that one day they can turn round and say sorry your CLL has now progressed out of watch and wait and your not going to make it

What than isn’t any one asking how this watch and wait his doing to my mental well being

I need an answer I want to know can any one please answer me 😢

20 Replies
oldestnewest

If you're talking about Watch & Wait in relation to CLL, then this refers to waiting for the onset of the so called B symptoms (drenching night sweats, severe fatigue, massive lymph nodes, accelerating WBC etc...). As to when B Symptoms start, its different in each case. I will have been on Watch & Wait for 11 years in July and have never required treatment or had any B symptoms. I'm unsure how long its been since your diagnosis however my experience has been that it's not worthwhile worrying about it. I used to get nervous in the weeks leading up to doctors appointments. I'd be wondering what by blood counts would be etc.... Then a couple of years ago the lymph nodes in my neck swelled up to be quite large (highly visible). The doctor recommended treatment (FCR) and I said no. It took two years but my glands have mostly gone down now. This made me realise that I'm in the driver's seat - they can't force me to do anything. Ever since, I've stopped worrying about my CLL. I don't even get nervous on the day of my 6 monthly checkups.

My advice: Once this COVID-19 business has subsided, and it will, make an endeavor to live each day better than the last. Get exercise, eat healthy and fill up your life with what ever it is you enjoy doing. Make sure you're always up and about with out a spare moment to dwell on your darker thoughts.

"Sound, sound the clarion, fill the fife!

Throughout the sensual world proclaim,

One crowded hour of glorious life

Is worth an age without a name."

~ Thomas Osbert Mordaunt

Altindal22
Altindal22 in reply to Curious12

Thanks for your advice sometimes it’s easy to do things to make myself feel happy but it’s not possible to be positive all the time

ZippyZ
ZippyZ in reply to Altindal22

I agree! And adding a pandemic, which could kill me is very stressful.

country76
country76 in reply to Curious12

I found out in 2012 and started treatment 2019. According to old lab results I had it prior to 2005. It is a shock when you first find out. I asked my doctor how much time did I have and he laughed at me saying he didn't know. He did say I most likely see a cure in my lifetime.

The first year was the hardest until I found a website similar to this one full of people with Cll. There was a lot of support and education.

W&W can be watch and worry.

When a negative thought pops up replace it with a positive one. It isn't easy, however staying positive will help. Eat healthy, exercise and have fun. I retired, however I wish I had continued to work.

Annually there are new drugs developing to help us manage Cll and possibly a cure in the future.

Knowledge is Power

Hi, like you and curious12 I am watch and wait since 2013. I too have had occasional and various B symptoms which have subsided. In February this year my WBC and lymphocytes went through the roof but have now gone down to a reasonable level again. Who knows why it happens? Maybe I had a dose of bat flu. All I could advise is the same as curious12, look after yourself and live as full a life as possible. Incidentally would a prefix to your Deniz2012 be Olu by any chance?

Thanks for your advice, I have been on watch and wait for 15 years but it sometimes gets to much because it’s like a burden hanging on your neck and you can’t really plan your life you need to be on alert all the time , sometimes I think so what just get on with it sometimes it’s not so easy

No I wouldn’t put Olu as a prefix to my Deniz2012

Hidden
Hidden

it;s watch and wait. never had to do that cause i was 'discovered' at 350,000 wbc and was put on imbruvica within 10 days.

Now i live 'blood test to blood test' which is watch and worry.

First thing.. take a deep breath and relax.. I assure you all is well .. watch and wait is typically the first diagnosis. Second of all.. I promise you .. you are "going to make it "!!! So please .. be calm and it is NOT time to worry. I know the diagnosis can at first be disturbing... and you have a million questions which take time to answer. a 10 minute phone call from a Dr is not going to make you feel any better. Bottom line.. as they said.. watch and wait.... and generally that phase takes a while.. we are talking years before they start treatment. And treatment once started vary... some causing some negative side effects.. some.. you don't feel a bit different. So do settle down... all is well.. you are going to be fine... I make you that promise to you. Feel free gimme your # in a PM if you need a human voice to talk to to make you feel better. I am darn sure not a doctor... but its a case of "been there done that" I would be glad to assist with if you need that prescription. AS for COVID 19... just do the same everyone else is doing.. act like you have some sense.. wear a mask when out and about... and wash your hands.

You came to a great website here that can help you with any other questions... a fair amount of these people are as educated or have more knowledge than the doctors themselves..

LIke is said... all is well.... you will be FINE... I promise!!!!!!!!!

Altindal22
Altindal22 in reply to chuckh

Thank you for taking time to explain its so assuring to hear the things when you explained it this clearly thanks again

I was on W&W 12 years. Our disease most of the time does not need immediate treatment like other cancers. When it's time, you and your doctor will know.

I barely thought about it after the initial shock. Few months later, I just went on with my life. Had no symptoms. Would never know I had CLL. Got my check ups every 4 months. My hematologist was calming and positive. Even when she told me in my 11th year that I would probably need treatment soon, I was disappointed but not panicked. She sent me to a specialist and a year later I had chemo. Very uneventful and successful. Lots of treatment options based on our tests/markers. Keep copies of all tests.

My hematologist never mentioned Covid during my visit last week. She just asked how I felt and to continue to feel good and stay safe. I have no idea how my body would react to any illness. I have stayed home for 11 weeks. Been going out to do my errands and stay as safe as I can the past 2 weeks.

I wish you a long W&W!! 💕

Altindal22
Altindal22 in reply to GMa27

Thank you 🙏🙏🙏

Personally, I wish they’d never told me I have CLL.

Once told, you can never be untold.

They tell you that you have an incurable cancer .. but, hey, no need to worry, it’s one of the ‘better’ cancers. They tell you that you could be one the lucky ones who never need treatment, but, ...there again, you might.

They can’t tell you what course your CLL will take or when, it could be years before you’ll need treatment...or it could be next week.

Basically, You’re at the roulette table and there’s nothing to be done, but.. watch and wait.. or wait and worry.

Don’t get me wrong, I count myself very very fortunate and I am eternal grateful that so far I haven’t needed treatment. Long may it continue.

But, I remain unconvinced that the mental health issues associated with W&W are fully recognised and understood.

Surely, the time has now come for a complete reassessment and comprehensive review of the whole “wait to be ill” strategy?

t2aa
t2aa in reply to Railmaster

Yep, totally agree! I was a mess in watch and wait. The thoughts running through my head were not healthy! I can’t help but believe that was doing damage to my body as well.

I was so relieved to get into treatment as I finally felt I was doing something about this disease.

Weirdly, now that I am in remission and my treatment will end in a few months, I will go back into watch and wait. I am hoping it will be different this time. I am not as freaked out as I know science is improving every day and maybe there will even be a cure someday.

At this point I am more worried about other health issues that are far more deadly such as diabetes and high cholesterol. Those I work on every day.

country76
country76 in reply to Railmaster

Yes this is my second 'good' cancer. In 2005 I had thyroid cancer. I am cured of that one. There is no good cancer however it is better than the rest of the list.

Hi Deniz2012,

Wanted to tell you that I can relate to how you feel about watch and wait. I’ve been diagnosed with CLL two years ago.

First year I needed my blood checked every 3 months to see if there was a progression in my blood. After that year I was announced that my pronostic was quite good and I needed to have my blood checked once a year. Wich was a good news!

However, I do have my time where I worry a lot about my health. This CLL can really play in your head, especially on watch and wait because you know you have it, you know it can progress but you never know when.

I must say that this feeling is kind of getting lower for me as the time goes. There is a learning to be made on how to live with CLL and we all will learn in our own way.

Effectively, some doctors should improve their « bedside manners ». At the hospital where they follow me, I get to see 3 hematologist from an appointment to another. I already have my favorite!

As for the Covid period, I got a phone appointment for my last blood test and yes, I did not liked it. Doctor seemed to be in a hurry, I could not see her face... and I do consider that this appointment was partial because I did not get any palpations. Kind of frustrating!

However, after a long period of learning, I am now able to understand my blood test results and for me this is kind of comforting and I do worry less about my CLL.

Watch and wait... what am I waiting for? In the words of Leonard Cohen... I would say : « Waiting for the miracle to come. ». For me, it brings me some hope.

Regards.

Thank you so much for your reply you have touched on everything I think and sometimes worry about in my life it is in a way comforting to know that I am not going crazy thinking like the way I do and that that’s are lots of people in the same position as me , I do wish I could shake these feelings of despair and get on with my life but it isn’t easy to do when people around you depend on you because you always put a brave face on and that works against you because it’s not something that people understand because your not in hospital and your not having no treatment and they just think there’s nothing wrong for me that is the hardest part of this illness not that I want sympathy I just need recognition and a bit of understanding

Sorry to go on

Thanks again

I think the first two years are key because a Dr told that that they look at the doubling time for the count especially in the first two years. My rose slowly in the first two years & they described my disease as indolent & believe it could be 10 or 15 years before I may need treatment & at 72 (almost) I'm not even sure whether I've got 10 or 15 years left in me.

My other bloods remain in the normal range thankfully, so I try to keep myself as reasonably fit & healthy as I can & following the advice many give on here helps, so I walk for about 60 mins a day, eat healthily & don't drink excessively. It's kept me on W&W for 5 years & I look to keep it that way for as long as possible.

I also tend to keep myself away from situations that might give me a serious infection which is the one thing Dr's tend to suggest might turn my situation from W&W into something more serious, so even though I think I might have had Covid 19 when I meet people from outside my household I keep myself at the proscribed social distance just as a precaution against the possibility I haven't had it.

Take care & stay safe.

I understand the frustration when they don’t explain and just hurry on to the next patient. Others have explained what you are “waiting” for, but I wish there was a different word for it. That “wait” just puts you on edge when in reality it could be years until you need treatment. I agree with others who say fill up your life with things you enjoy.

On the COVID stuff, we are being reasonably careful but living life. We both have continued working, shopping, visiting family. I know others have low neutrophils and have reason to be super careful. I think you need to make your decisions within the parameters but try to do as many normal activities you feel you can do safely.🙏

Newdawn
NewdawnAdministrator

Don’t think of it as ‘Watching & Waiting’ Deniz. It should be living whilst monitoring and no reason you shouldn’t live well.

Consultants don’t get so excited about low grade CLL because to them it doesn’t represent any immediate risk. That’s sometimes hard for us to understand because it’s emotionally hard and we are looking for answers they often can’t give us.

Sadly, some don’t even try!

I’m on treatment and haven’t seen my Consultant for many months. I’ve no idea when they’ll restart face to face consults. My IVIG has been stopped but I accept this because Covid represents a risk to us CLL’ers. Our broken immune systems may not be able to cope with the rigours of a virus that relies on a competent immune system to sort it. So we are shielding for our own safety. We are waiting until the numbers in the community are so small that transmission is massively reduced and ultimately we are waiting for a vaccine or treatment. Nobody yet can confidently say when that will be but it’s looking hopeful 😊

As for the CLL, there’s pretty clear criteria as to when that needs treatment and your Consultant will be aware of it. Unfortunately, CLL isn’t a neat, predictable condition so giving us definite times scales isn’t always possible. It doesn’t happen overnight and you’ll know when symptoms or blood results are showing that treatment is approaching.

Just stay safe and well and rely on the support of the good people here who will steer you well.

Best wishes,

Newdawn

Altindal22
Altindal22 in reply to Newdawn

Thanks Newdawn

So much appreciated

Stay safe

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