CLL

[DaisyTaylor]

Hello everyone! I am very new to forums. I want to learn as much as possible about being on watch and wait. My dear aunt is in this situation and it seems as nothing is happening. No treatment, no news from the medical team, just waiting ... which is very frustrating for everyone including her.

[Newdawn Administrator]

Welcome Daisy and congratulations on being such a caring and concerned niece! Your Aunt already has excellent support with the level of interest you are showing on her behalf.

Watch & Wait is a curious phenomenon in medical terms because it defies the usual Cancer pathways of 'act quick and eradicate!'. It's sometimes called 'Wait & Worry' as a result. But there's compelling reasons for the approach backed by scientific evidence that acting prematurely in early stage does not improve overall survival rates. Time for treatment is dependent on so many factors and not necessarily driven by lab numbers. Hopefully your Aunt is keeping reasonably well and has consults with a specialist so many times a year (each Consultant seems to space it differently). I see my Haematologist every 3-4 months despite being at Stage A because that's his clinical practice. And it is indeed odd that in the interim nothing seems to happen with no medication or treatment. The best advice is that she keeps herself as well as possible, has the necessary inoculations, eats well, keeps as active as possible and avoids excessive stress as much as she can (not always easy!).

This link from Patient Power may help to explain the reasoning much better than I.

patientpower.info/video/why...

Hope your Aunt keeps well and please keep in touch and ask any questions you feel would help her or you on her hopefully very long and uneventful CLL journey.

Regards,

Newdawn

[DaisyTaylor in reply to Newdawn]

Thanks so much for your advice and information! It means a lot!

[Myrddin]

Watch and Wait is the best 'treatment' if the CLL is not causing serious symptoms. That does not make it any easier to live with but over time it is possible to live with it.

If you want to learn more the see the parent site - there are many videos that will help

cllsupport.org.uk/news/clls...

[DaisyTaylor in reply to Myrddin]

Thank you. Much appreciated!

[Ernest2]

Dear Daisy,

First a very warm welcome to HU. Sorry that may sound a bit odd just at the moment but all will hopefully get clearer.

Also please excuse my brief answer just at the moment.

There are lots of great folk here on HU with lots of knowledge so you have come to a good place.

Just a silly question, would you feel able to give your rough location on the planet (not your exact address) That will help people give you the best answers.

One thing that is key for your Aunt is which group of CLL patients she fits into. There seem to very roughly be three main ones:

1. Those with certain well identified genetic deletions etc. Some of those need treatment within a year.

2. Those in a group needing treatment within very roughly say about 5 years. E.g. I'm currently thought to be in that group (I'm at the end of my first treatment now after being diagnosed in 2011, and starting treatment at the end of last year.)

3. A group of patients not needing treatment for 10 years or more.

Of couse at diagnosis we all hope to be in the third group. Can somebody please remind me of the rough percentage split between the three groups.

Now the first group of patients is reasonably easy to identify. The split between the second and third groups is harder, but tests are improving.

Bear in mind lots of new treatments are being invented, and probably faster than anyone can test them.

As somewhere to start trying to understand all this, can I recommend the CLLSA:

cllsupport.org.uk/cll-sll/s...

Also if you are based in the UK I can recommend attending one of their meetings to meet fellow patients, and listen to talks from the expert clinicians.

Now I'm not sure how many questions your Aunt may have asked so far, nor the answers she may yet have e.g. blood test numerical results.

It is worth though learning as much as you can in between talking to the doctors, to get the best answers. That also will probably seem a little strange at the moment until you learn how much is going on in the world of CLL. Don't worry about not being able to understand it all to start with, it will get better. Fortunately for most of us CLL is slow so there is time to learn.

Please ask any questions you have as they arise.

Best Regards,

Ernest.

[DaisyTaylor in reply to Ernest2]

Thank you for your advice and caring words, Ernest! We live in London, UK.

[Ernest2 in reply to DaisyTaylor]

Hi Daisy,

Apologies for my very slow reply.

London is I think a great place to be for CLL, if I can put the traffic to one side.

I have been to a CLLSA conference at Barts, to listen to Dr Samir Agrawal and Professor Daniel Catovsky, two great experts:

cllsupport.org.uk/article/r...

Also on HU as:

healthunlocked.com/cllsuppo...

Please keep asking the questions, and hope the "Watch and Wait" concept is becoming clearer. It is strange to get your head around to start with.

Best Wishes,

Ernest

[ccm47]

As somebody who has spent more time in hospital than out of it over the last winter following chemo for CLL, I do wish the phrase "watch and wait" was altered to say "Watch, wait, and in the meantime be grateful and live life to the full".

I am very aware that the W & W period is a shock, but I rationalise it by thinking of all the other nasties that I clearly don't have e.g. diabetes which is life changing from day 1 because of the need to change one's food intake nor have I yet met with an accident that has turned me into a paraplegic in seconds.

CLL does not often change one's path in life significantly as it is a disease of mature adults who have made their lifestyle choices, whereas even poor hand/eye co-ordination in a child restricts their choice and enjoyment of sports and occupations.

May I suggest that the best way you can support your aunt is to encourage her to live whatever she thinks of as a fulfilling life, between medical appointments ,and help her do this now so that you all have happy memories to look back on in later life.

[DaisyTaylor in reply to ccm47]

Thank you. We all do our best to support / help her, but sometimes we feel it is not enough

[PaulaS Volunteer]

Hi Daisy,

Welcome to the site. I'm sorry to hear of your aunt's diagnosis, but it's great that you want to help her at this difficult time. I'm glad you've found us.

I understand the frustration you and she must feel. Many of us felt that way, when first diagnosed. We want something to happen – we want to DO something, but we don’t know what to do.

It was because of that frustration, that I wrote a post here a few months ago. First I called it “Things people can DO, to help them through Watch and Wait”. Then I changed it to “Coping strategies for living with CLL – Making good use of “Watch and Wait.”

Anyway, the point is that it is a list of simple, practical things people can do, that can improve their journey through the CLL maze…

The points on the list aren’t just my own ideas – many are tips I’ve gathered from other people who have shared stuff on this site. Some are basic, common sense suggestions that would be good for anyone who is wanting to improve their general health. But some points are very specific to people with CLL.

After I’d written it, several people suggested extra points to add to the list, based on their own experiences. So, it expanded and is now in three parts. I’ll give you the link to the first one, and if you find it helpful, you can follow on to Parts 2 and 3 (links given at the end of Part 1).

healthunlocked.com/cllsuppo...

Do come back to us if you have other questions.

Wishing all the best to you and your dear aunt.

Paula

P.S. This is the first forum I ever joined, too. I wasn't quite sure how it would work at first, but I've been here over 2 years now, and it's been a life-changer for me. People are so helpful and understanding. Some have become real friends - something I never expected when I first joined.

[DaisyTaylor in reply to PaulaS]

Thank you, Paula! I was not expecting so many caring replies to my email. I've got a lot to read now

[PaulaS Volunteer in reply to DaisyTaylor]

Do let us know how things go, for your aunt. And with you, Daisy, as you learn more about CLL and "Watch and Wait".

Best wishes,

Paula

[yodajack]

Hey Daisy, just a word of encouragement. I was diagnosed with CLL after surgery to remove my parotid gland - a gland in the lower left of your jaw which produces saliva - in Feb 2007. However, I may have gone undiagnosed for over 20 years. In 1995, I was admitted to the hospital on my 45th birthday for elevated white count. I had already had my appendix removed so the DR's spent a week performing every test they could, including upper and lower GI's. They did find a polyp in my colon and removed it - which may have saved my life. My younger sister passed away at 55 from colon cancer - she had never had a colonoscopy. At any rate, the one specialty they did not consult was an oncologist or hematologist. So, chances are I've had the condition for an even longer time than my diagnosis. I have been on watch and wait for all this time having annual checkups to monitor blood counts, etc. my white count is currently in the 16-20k range. My Onco has told me "You'll have to find something else to kill you cause this isn't going to do it."

Chances are, and hopefully so, your aunt has a long way to go...Blessings!

[catmad1]

that is what 'watch and wait ' is all about. Regular blood tests and watching what the white blood cells are doing. You don't give your aunt's age but if she is a n elderly person, she is a more likely candidate for CLL and may have it for years before it becomes a problem. I have been on 'watch and wait for fifteen years! and still haven't received any active treatment although I have had infections etc that are very common with CLL patients. Just keep away from her if you or the family have colds, sore throats etc and keep snotty nosed children also away, Provide nice snap shots of them instead!

Get some information either from Leukaemia Care or the CLLSA if you are a British 'carer'. Hope this info helps.