UK CLL Forum, UKCLLFORUM

Newly diagnosed with CLL

Topic Made On: Jun 02, 2008 02:51pm
michelle47

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My mum (aged 64) recently had a routine health check and came back as diagnosed with CLL. What I would like to know is there anything we should be doing, i.e. change of diet, suppliments etc to help. Had it confirmed by other blood tests last week.

Her recent blood test came back as 24 (is this high) not sure exactly what this means and trying to look on the internet is quite perplexing.

My mum is being quite matter of fact about this but I would like to know more so that I can help etc.

Thanks for any advice you may be able to give me.

Michelle




Replied On: Jun 02, 2008 07:28pm
ronnie

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Hell o Michelle - sorry you have had to join our little group but welcome. I am sure there will be people here who can help and reassure you. You will find some of our stories on the site if it helps. I agree it is bewildering when you first encounter this and are looking for information. I was diagnosed routinely in Dec 006. my white count - which I expect will be the marker you are referring to - was 42 and has remained pretty constant from then. I am not undergoing any treatment and no doubt it will be the same wait and see advise your Mum is given. Basically the specialists seem to think that unless there is reason to (the count doubling within a year; large spleen; swollen lymph nodes )no treatment is given. The count itself is not important - people on here have some very high counts and are still wait and see - its how fast it progresses. Hopefully your mother will have no problems for some time and after the initial shock will forget all about this as she goes about her daily life. I havve regular 3 monthly or so blood tests to reassure myself about progression and find this is all I can do and find no reason to radically change my lifestyle - though of course it makes you think about things a lot more. So your mother can indeed do no more than be matter of fact about it. Obviously like everyone with or without CLL a healthy diet etc helps and I have been taken green tea as supplements in capsule form (from a health food shop)in the hope it will keep the count down. Time will tell!

So try not to worry too much - there are lots of people worse off than having CLL.

Hope this helps

Ronnie



Replied On: Jun 02, 2008 07:31pm
ronnie

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Re patient stories - you will find the link to this in the top of the page - patients profiles - and it may help you to read that.



Replied On: Jun 05, 2008 07:32am
michelle47

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Hi
Thanks for your reply. Will give me something to think on. At the moment she has no swollen lymph nodes or anything. She has just been back and her blood count has dropped slightly and she has to go again in 6 weeks time. We live in Leeds and there is a new cancer centre that has recently opened and luckily the doctor their he and his team are researching this disease (or so they say).

I have been reading about the different kind of mutations within the cell which causes how fast the disease progresses, is this right. If so, do they routinely check for this.

Michelle



Replied On: Jun 05, 2008 02:18pm
Robert Cork

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Michelle

It sounds as if you are coming up to speed very quickly on mothers CLL. Well done!!!

If you are attending the Leeds General Infirmary and the team of Professor Peter Hillmen, then you are in good hands. The Leeds Royal Infirmary is one of the Centres of Excellence in the UK for CLL.

In answer to your question. If your are referring to the mutation status of IgVH, then once you have obtained the diagnosis, mutated (good) and unmutated (not so good) then there is no need to ever repeat the test, as it has been proven that this status is with you for the rest of your life.

There are some other Prognostic Indicators that are worthy of note that do change over the course of time:

CD38 (negative good, positive not so good)

FISH (Fluorescence in-situ Hybridization)
11q23 Deletion poorer prognosis
17p13 Deletion poorer prognosis
13q14 Deletion improved prognosis

I hope that you do not find the above FISH a little hard to swallow (no pun intended). Please ask if you require any additional information.

Please also remember, if you would like to talk to someone on the telephone about their CLL you only have to ask.

Good luck.

Regards

Robert



Replied On: Jun 05, 2008 03:01pm
michelle47

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Hi Robert

Thanks for your reply and help. Yes, my mum saw Prof Hillmen and has been put into his clinic - so thats good news.

However, getting back to the mutation status do they do this as a routine as I would love to know what we have to expect but my mum is sort of denying anything is wrong by stating that its just her white blood cells and not thinking of anything ahead. She has been informed that it is in its very early stages and that it could be like this for years - I expect thats what everybody is informed. so I dont think she will be asking these questions. But I would like to find out.

Michelle



Replied On: Jun 05, 2008 03:02pm
michelle47

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PS. Read about green tea and CLL so popped down to the Health Shop and got some capusles. Mum just sat and laughed - seems that roles are beginning to be reversed here.



Replied On: Jun 05, 2008 04:16pm
ronnie

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Michelle - it is of course very normal to ensure that YOU are doing all you can to help her. Indeed it was my wife who has got me on the green tea business. Like your Mum I am sceptical it will help but have also checked it wont do any harm (if not overdosed!) so am happy to try. I may have a definitive answer in a few months when my next blood test is due. Maybe you could try suggesting she drank it instead - its quite refreshing actiually!

I have not had any prognostic indicators. Mostly because no one has offered them - we are all different in wanting to know our possible outcomes of course. All you can do from your own point of view is everything you are currently doing - reading up about it, understanding it and joining a community such as this one. The rest is up to your Mum with the support of your informed advice!

She is fortunate in being under the best care. Robert and I just lost our centre of excellence here in the South when Prof Hamblin retiured so I am still for now under NHS and see a different consultant each time who does not specialise specifically in CLL.



Replied On: Jun 06, 2008 03:11pm
Robert Cork

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Michelle

I am 99.99% certain that thay will run the mutation test. However, you might as well check. The full panel of prognostic tests are:

IgVH
ZAP70 which might be tested for as a comparison against the IgVH
CD38
FISH
11q23 Deletion
17p13 Deletion
13q14 Deletion
Trisomy 12 - means the 12th chromosome has three chromosomes, instead of the usual two.

This is a sensitive area, but as you have already concluded, there are three generic types of CLL: Indolent, Intermediate and Aggressive. Each generic type has its own survival statistics. These test CAN give you an indication of possible outcome. But they are statistics and not all patients will be the same. I am example of that, good indicators, but needed treatment.

Regards

Robert




Replied On: Aug 24, 2008 07:43am
carfax

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Hi Robert,

I'm new to this forum. I was diagnosed with CLL a year ago.
And I've just been told that I have COPD. Any advice.

Brian



Replied On: Aug 24, 2008 11:40am
Robert Cork

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Brian

Welcome to the forum. I am sure you will find the forum of help and support to you regarding your CLL. If you have any immediate questions please let us know.

Regarding your COPD, we might not be able to help you much with that, it does add another dimension to your CLL.

Would you like to add some more information about you and your CLL journey todate?

Regards

Robert



Replied On: Oct 11, 2008 12:48pm
emma

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Hi there,

My father in law has just been diagnosed with low grade cll. I am a bit at a loss as to what the implications of this are and am feeling a bit confused. He has got to go for another blood test in 3 months. My family seem to be taking it quite well and I was wondering if there should be more concern about the diagnosis. Can anyone help??? Emma



Replied On: Oct 13, 2008 12:11pm


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Hi Emma.

CLL is a very varied condition that effects everyone differently. I have personally found that taking time slowly to understand the aspects that are important to me now helps my dialogue with my physicians and carers.It is easy to become confused by the amount of information around - much of which will not be apppropriate or relevant to your father in law.

You might like to have a look at:

http://clltopics.org/Primer.htm

Although this website is american I find it user friendly and accurate.

Good luck.

Adrian.



Replied On: Oct 13, 2008 05:14pm
Robert Cork

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Emma

Sorry to hear of your father in law's diagnosis. We would be more than happy to answer any specific questions that you may have, but your original request for information is rather wide. I expect that you have searched the internet for information about CLL and have found some informative sites, but just in case, the extract below gives a broad overview of the condition.

As I have already stated, if you need any specific information about the condition and treatments, please do come back to us.

Regards

Robert

CLL is a type of leukaemia, or cancer of the white blood cells (lymphocytes). CLL affects a particular lymphocyte, the B cell, which originates in the bone marrow, develops in the lymph nodes, and normally fights infection. In CLL, the DNA of a B cell is damaged, so that it can't fight infection, but it grows out of control and crowds out the healthy blood cells that can fight infection.

Most people are diagnosed without symptoms as the result of a routine blood test that returns a high white blood cell count, but as it advances CLL results in swollen lymph nodes, spleen, and liver, and eventually anaemia and infections. Early CLL is not treated, and late CLL is treated with chemotherapy and monoclonal antibodies. Survival varies from several years to more than 25 years. It is now possible to diagnose patients with short and long survival more precisely by examining the DNA mutations, and patients with slowly-progressing disease can be reassured and may not need any treatment in their lifetimes.




Replied On: Oct 13, 2008 07:06pm
emma

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Thank you everyone. I am slowly beginning to piece together what CLL is and how it develops. The implications it has etc. My father in law at present is low grade and it would appear they are just monitoring every 3 months for any changes. Thank you Adrian and Robert for your quick replies and advice/ help.

Emma



Replied On: Sep 15, 2009 12:49pm
teakbank12

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Hi
I am recently diagnosed after a routine bloodtest checking my levels due to the drugs i take for my Crohn's disease.
Have seen the consultant haemo at my local Bedford hospital & he sent me for a CT scan which i had yesterday.
Am now waiting the results to see how my lymph nodes are affected, i do have nightsweets but always put everything down to my Crohn's.
Having two Chronic diseases that are not physical from another persons view is hard to deal with.
Total exhaustion i live with due to my Crohn's & its not going to be helped by having CLL.
GP & Consultant both think ive had this for maybe a year or longer undiagnosed.
Am now looking at a lifestyle change including maybe giving up work, i cannot do any less physically demanding work than at present as i work in an office.

How many other have made this choice ?

Dave

PS lots of other questions ive probably not thought of or forgotten to ask



Replied On: Sep 15, 2009 08:11pm
sassy1261

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Hi, I am 63, diagnosed at the beginning of the year. I went to my doc to have my thyroid meds upped as I was always exhausted. The doctor said 'well that will be the leukeamia then!' When I had picked myself up of the floor he explained and said they had been monitoring it for about 4 years. I had two appointments with the haematologist (not a cll spec) in my area who told me not to worry, wbc count of about 50 and she could not find and lymph glands. It took me a while to get my head around it. Went online to find out where lympth glands are and found 4 swollen (since been confirmed). I also went on a site called clltopics



Replied On: Sep 15, 2009 08:17pm
sassy1261

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cont/d
which is brilliant, and found out what tests I was supposed to have. The next appointment with the spec I asked what the results of the tests had been as I was sure they had not been done. After assuring me they had been she then discovered I was right and proceeded to take more blood. This was mid August. Because she was going on holiday she said to ring at the end of September if I had not heard! I have days when I am so tired I shake and cannot move and days when I feel fine. I have a sick daughter I care for as well as my grandaughter and parents, so I want to know what my indicators are, I am not a believer in sitting back and



Replied On: Sep 15, 2009 08:24pm
sassy1261

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cont/d
doing nothing, I am the captain of my own ship as they say. If the tests come back and I have the best indicators then fine, if not I will be making my own decisions about treatment and getting myself sent to Cambridge which I believe is the nearest centre to me with a CLL specialist. Fingers crossed I will be a smoulderer, if not I will be making as much fuss as necessary.

Best of luck to all



Replied On: Sep 17, 2009 09:33pm
rr77rjh

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Diagnosed CLL 8 years a go been ok so far, also have Colitis, Bladder cancer and Diabetes still work just as a Vehicle Inspector but I think I will finish soon



Replied On: Sep 29, 2009 09:27pm
teakbank12

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Obtained a copy of my recent CT scan results, can anyone interpret the results whilst i await the appointment with my Consultant. ie are these small in comparision & will i expect to continue to be monitored.
I know its probably nothing to worry about.
I have to wait till the end of October before seeing him.

CT NECK, CHEST, ABDOMEN & PELVIS.
There are two large right submandibular nodes measuring up to 11mm in short axis & several nodes in the left axilla measuring up to 14mm in short axis. None of the right axillary nodes are significantly enlarged but they are numerous. Numerous small nodes are also seen in the superior mediastinum, anterior to the trachea & anterior to the aortic arch, measuring up to 8mm in short axis. No indication of axillary or retroperitoneal lymphadenpathy. In the pelvis i note moderately enlarged obturating nodes bilaterally measuring up to 10mm in short axis on the left. There is no indication of orgenomegaly.



Replied On: Oct 01, 2009 09:37am
Zeno

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Teakbank

Personally I do think that it is so important to allow your Consultant to translate your results for you. Any misinformation could get you more concerned than you need to be. Just a point of view having been through this experience for some nine years now.

Zeno



Replied On: Oct 27, 2009 02:38pm
vicki steel

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Hi My Aunt was diagnosed with CLL last month. No mention of what stage. She has apparently had it for 10 years, but only had symptoms the last 6 months. Night sweats, weight loss, extreme tiredness, infections, plurasy, breathlessness, has a constant cold/cough, mouth ulcers, blood clots etc etc. She really is unwell. But nobody has mentioned to her any treatment other then blood tests and being checked by the doctor as and when she feels more unwell. Is there any thing anyone can tell me. My own reseath suggests that she has type 4 or band 4, the worst one, but i really am not sure as i have no actual figures or facts from the doctors. Any help or advise would be really appreciated. Thanks



Replied On: Jun 08, 2010 01:35am
annie23

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Hi, I have been diagnosed with early CLL 6 months ago. I am terrified. I am 42 years young. I am under the macmillan unit at Milton Keynes Hospital. I have had a CT scan but have not been given the results as yet. I have had multiple infections this year including pneumonia that ended up with me in hospital. Could this be linked to the CLL? I have had several other chest infections, also. Any information gratefull received. With kindest regards, Anne xx



Replied On: Jun 08, 2010 10:04am
adef

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Hi Annie.I am sorry that you have had such a difficult year.The questions you ask should best be asked of your consultants. There are many leaflets and websites that provide information about infection in CLL and there is an awful lot to learn. Here is a website that I use a lot:

http://www.clltopics.org/Complications/InfectiousComplications.htm

I usually have to have several goes at reading detailed articles like this but I hope it helps.

So when you next see your consultant, power to your tongue.

Adrian.



Replied On: Jun 09, 2010 10:52am
cranwellpoacher

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Hi Anne.It sounds like you are in a position now that i was in almost 4 years ago!.Firstly...don't panic! (as they say in the Hitchhikers Guide).
I was diagnosed with CLL at the tender age of 40, and remember thinking that my life was over!.....mad now, but at the time that is what being told I had Leukaemia meant to me.
If you want to talk about your worries and concerns, or just maybe want to gather information about your condition, pop along to my website (below)and have a look at some of the posts....i try to mix useful info with a dose of humour.....it keeps the thing less daunting |-)

www.scirocco2morocco.blogspot.com

Best wishes......don't panic!
Andy



Replied On: Jun 10, 2010 03:34am
annie23

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Hello Andy

Thank you wholeheartedly for your prompt reposnse. Panic? I've done that !! I thought my life was over too. I totally fell to pieces, as I expect many others have at the diagnosis. I'm just so confused and worried obviously. I had to see my GP yesterday, he was suprised that the macmillan specialist did not give me the results to my ct scan, this worried me further. I have to go there next week, so I'll have to pluck up the courage to get them. Thanks again, Anne x



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