Why Watch and Wait explained

[Babs-0]

As someone who was diagnosed almost a year ago and is in stage 0 - watch and wait - it was so comforting to watch the video below, as it explained my situation so well. I hope it brings comfort as well as additional knowledge about this disease to others.

patientpower.us2.list-manag...

[AussieNeil Partner Administrator]

Thanks Babs, for post this link to the latest Patient Power Video where "CLL experts, Dr. Michael Keating and Dr. Januario Castro, explain why it’s necessary and beneficial to watch and wait with CLL". I'd say that this short 7 minute video is essential viewing for anyone newly diagnosed that is trying to get their head around why they aren't being treated. Watch and wait is a difficult concept for a new patient to understand - and then there are the inevitable question on "why aren't you having treatment" from everyone with whom you share your diagnosis.

Also, from the 5:20 mark in the video, some words of hope for the newly diagnosed from Dr Keating for those in countries where treatments are not as readily available as in the USA: "The other thing was that if you watched a patient for a year, with those characteristics that I mentioned of smouldering disease and the lymphocyte (count) didn't double, those patients have a survival the same as if they never have CLL."

Neil

[placebo_09]

"The other thing was that if you watched a patient for a year, with those characteristics that I mentioned of smouldering disease and the lymphocyte (count) didn't double, those patients have a survival the same as if they never have CLL."

is their quality of life the same?

[AussieNeil Partner Administrator in reply to placebo_09]

You'll note that earlier in the video, Dr Keating carefully defines a 'smouldering CLL patient', where he states most of them don't have any symptoms, have good blood counts and don't have very big lymph glands or spleen. I'd expect that many of these patients would indeed have a similar quality of life to someone without CLL, particularly if they've been diagnosed in their 70's or older. With CLL, there can always be the unexpected, which is why our condition, even if 'smouldering', should be monitored by an expert. There may be consequences from falling immunity, but given an older person is less likely to be working regularly or facing frequent exposure to others that are ill, it should be possible for many in this category to maintain a good quality of life with perhaps a few lifestyle changes. The toughest of these would probably be avoiding contact with unwell grandchildren.

[placebo_09 in reply to AussieNeil]

Hi Neil thanks for your response. It makes sense for people in their seventies.

But what about people in their fifties or perhaps younger who are working regularly and want to be very active and fatigue is a problem?

[Babs-0 in reply to placebo_09]

Placebo_09

I feel your pain. I am 65, had planned to work for as long as I felt like it, but am retiring soon because of the fatigue and being overweight with diabetes.

I am sorry you are younger and having to deal with CLL. I know it must be hard for someone making a good salary.

[AussieNeil Partner Administrator in reply to placebo_09]

Someone in this situation of struggling with fatigue MAY be fortunate to find an understanding doctor, but that seems to be pretty rare. (There's lots of content on this site about this very common and poorly understood problem. For starters, check out healthunlocked.com/cllsuppo... and look at the fatigue related pinned posts).

If they can find a haematologist experienced in CLL, then they should get some understanding and support for blood tests (if their regular doctor isn't helpful) to check Vitamin D and maybe B12 (particularly if they are on a proton pump inhibitor drug to lower stomach acid). Use supplements to get these into the normal range.

I fitted your scenario when I was diagnosed, but had to resign from the workforce because constant infections due to my very low immunity were leaving me very fatigued. I've been able to regain much of my quality of life, but it was a very slow process taking several years. Hence my advice is to definitely maintain what fitness you have and build on it if possible, being careful not to over do it. Keep an eye on your immunity i.e note how many infections you get and how long you take to recover from them, monitor your neutrophil and immunoglobulin levels and take appropriate precautions to minimise your infection risk.

Neil

[pitbull]

Thanks for that and to add to the debate on fatigue and immunity, I fit the category of smouldering CLL and lead a normal life, or so I thought, I was also diagnosed just over a year ago.

my thoughts were that my bloods are good and the disease is in such an early stage with very little change to my bloods in the last year that I don't consider my immune system as compromised, after all, I am not seeing my WBC or Lymphocytes change much at all.

However, since changing jobs and moving into an open office of 30+ people, I have been dogged by sniffles and coughs since I started in Feb and my fatigue is getting worse, by the end of the week I am shattered ready for the weekend.

I think it's time for me to review my stance on compromised immune systems.