UK CLL Forum, UKCLLFORUM

New Member - Recent diagnosis

Topic Made On: Aug 18, 2010 10:46am
jess

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Hi! My name is Jess and I am a 53 year old bloke who was recently diagnosed CLL following routine blood tests. I have been told that I have no symptoms yet but that I have malignant cloned cells. My Hb and platelets are within normal range. I do not know much more. My dad has cll and he is 88 this year having lived for the last 15 years, since diagnosis, without any treatment.
Can I find out anything more from my Blood count results. I still have 3 kids at home 13, 11 and 10 years and I feel I need more info. regarding the future. (Chrystal Ball?) Thanks for any help! I feel quite well at the moment. Kind Regards Jess




Replied On: Oct 29, 2010 02:39am
Venceremos

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Jess,
Yourself and your Dad are just what i needed. I was diagnosed with CLL on Monday, and i've had a mix of emotions: crying myself off to sleep; but on the other hand feeling incredibly stoical, even consoling a friend on the phone who was more upset than i was. It's taken me four days to use this website (couldn't face it) but i'm glad i have.
I was in hospital last year for four months [Pneumonia, Pulmunary Embolism, Tracheostomy] in ITU for a fortnight and bedridden for over two months. I had to teach myself to walk again. It could be related to my CLL, seeing my GP tomorrow.
Regards Alan



Replied On: Dec 03, 2010 01:05am


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Hi All!
I too have been Diagnosed BCLL since August this year --I am 72 yrs young and was totally perplexed --
I had never heard of BCLL/CLL until my visit to the hospital which my GP arranged after the result of my regular blood tests for my vascular problems highlighted white cell abnormallity and their increase--!
Evidently it had been creeping up since 2006 but it made a jump to 12.4 this August --My hospital visit rather threw me
(my 1st reaction to my GP in my thoughts were 'Oh is just a dirty slide or a wrong reading'!) now I have read about it and YES Jess your post has let me relax a little--I still feel like there is a hammer that possibly won't ever drop, one minute, to fear that it could suddenly decide to fall! silly I know but thank to your post, I am getting things in perspective.
Thank you for making this site available to us -I will go through all postings bit by bit
Regards Barbara



Replied On: May 05, 2011 11:18am
pendle witch

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I was diagnosed with CLL last July, through routine blood tests. I recently read a book, The China Study by Dr Colin Campbell, an eminent American scientist, which has been pretty life changing. I would urge anyone who wants to try some self help to read it. I also went to an Allergy Test UK Consultant and cut out foods that my body was struggling to tolerate. As a result all my friends are commenting on how well I look and I feel great. I have lost most of the middle aged spread that just wouldn't shift (I am 51) and when I saw my consultant last week, my white blood cell count had gone down slightly. Early days, but I am hoping this new regime is going to help.

Has anyone else experienced their white blood cell count decreasing? If so, can they attribute it to anything they are doing differently?



Replied On: May 06, 2011 09:06am
Venceremos

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Hi,
I was diagnosed with CLL last October, i'm a 52 year old male. My white blood cell count has also gone down. I've become vegetarian and i personally believe that my use of Green Tea [Twinings] and Organic Milled Flaxseeds[Omega3,6] helps. I also won't eat or drink any E numbers, or eat any added sugar. I also don't drink alcohol(believe it or not i'm not a Monk). I eat and enjoy Organic Porridge; but i don't eat processed breads and other cereals. My psychological approach is: i can't cure myself of this disease; but i can control it.



Replied On: May 06, 2011 12:16pm
Nick

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Alternative, Complementary and Integrated Medicine has it's place in CLL management I believe there is a designated section for it here?

I was diagnosed last february following investigations into a stroke the year befor. At first raised lymphocytes were misunderstood as a by product of the infarct. however I can track my counts back to then. they remained in the low abnormal range for some time climbing slowly untill last summer when I improved my fitness levels and recieved some considerable (protected) sunlight whilst gardening. Then they dropped and levelled out for the summer, only to continue to rise again this winter untill I shoock of the SAD and sloth of winter and started gardenung again and exercising. Needless to say they have remained constant again for the last three months. it will be interesting to see what a further three months gives me.

Having (like many) done a lot of reading up and consulting with CLL specialists and CLL experts, I have come to recognise perhaps that Vitamin D and exercise can play a part in us being able to assist keeping our counts under a degree of control, only perhaps if we have less agressive CLL types? Also that there maybe a placebo effect to improved outlook. As good general health and fitness also improve our outlook, perhaps this best prepares us to live with CLL and be prepared for treatment when that time comes. One thing I would note is the potential for msjor diet changes changing our vitamin reserves and intake. I have attached a recent post by professor hamblin from his blog Mutated Unmutated, http://mutated-unmuated.blogspot.com/2011/01/alternative-therapies-for-cll.html.

Nick 48 Trisomy12 w&w&living life.



Replied On: May 07, 2011 09:21am
pendle witch

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Thanks to you both, Venceremos and Nick. You both picked up on other things I didn't mention, namely that The China Study book I mentioned urges a vegan way of eating. Dr Campbell's studies and experiments in China proved that animal protein exacerbates certain types of cancer, though he doesn't mention CLL. Milk and dairy products are just about the worst things to eat, causing cancer, heart trouble, strokes and diabtes. Rice or oat milk is a brilliant alternative - not soya, it has too much oestrogen.

I lost my job just before Christmas and like you Nick, have built up my fitness levels by walking my dogs more every day and spending more time in the garden.

Like Nick I have been eating flax and taking Green Tea supplements - these are available from Healthspan and are a lot stronger than the tea. My mum had problems with her legs swelling, caused by the lymph glands and since taking the green tea supplements, the swelling has gone.

Thanks for the link Nick and I will definitely look at Professor Hamblin's blog.

Oh - I've also had all my amalgam fillings replaced. My new holistic dentist tells me that it may or may not help. Mercury affects people in different ways, but it is one less poison for my body to deal with.

Keep strong and positive



Replied On: May 08, 2011 10:41am


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Pendle witch, not me on the green tea and flax it is for Venceremos.

Exercise is hard if you are arthritic or have comorbidities or are just plain knackered with general fatigue. Having an activity to distract helps (walking the dog, gardening}, I wonder, How do others keep good general fitness when mobility may be an issue?

Although I feel a little less fatigued these days, I wonder if that's just down to disease progression and reduced immunity. Or if fitness vitamin D and outlook have played a part? Venceremos mentioned no alcohol, I must admit I'm also no monk, but have ended up tea total the past several months, as after a drink my nodes seemed to twitch and jump about? Or just feel uncomfortable and with them me. Well I attended a friends wedding on Friday and chanced a few drinks, the first thing I noticed was uncomfortable twitchy cervical nodes and I also felt uncomfortable. Hard one when I do love to toast the veg in the garden every now and then!! lol

Perhaps one of the greatest aids in improving outlook, can be learning. Understanding our different diseases can be empowering for knowledge can be powerful, as long perhaps if it is factual and not fiction. A useful site to visit can be at the CLLSA where the section providing links to other CLL related learning and support groups, Sources of information, can be a good learning springboard. http://www.cllsupport.org.uk/sources.htm

Nick 48 Trisomy 12 w&w&living life



Replied On: May 08, 2011 11:26am
Nick

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I Forgot to mention; although it may be obvious to many, A very high proportion of us suffer a suppressed immunity, even at a very early stage of our diseases. As it is the season for gardening, we have to be carefull to ensure that all salad and fruit crops are thoroughly washed befor enjoyment (and that goes for shop bought). Unless, blanched, steamed boiled, roasted etc, as part of the pleasure of the fruits of labour. Again another thing to be aware of is the increased need for sun and hygene protection when gardening itself! One of the pains of our predicament, but if we take precautions and do what we can when we can, we can live the way we wish to.

Nick 48 Trisomy 12 w&w&living life



Replied On: May 08, 2011 05:45pm
Venceremos

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Thanks to pendle witch. I'll definitely be getting that book. My dentist told me: that the potential danger point with mercury fillings was when they were installed; and uninstalled. The point being: that when the mercury was hot and in liquid form it could adversely interact with the blood; but when it was solid it was safe. I'm no dentist but i believed her. On the subject of milk i honestly don't get it: you'd have thought that milk was one of the ultimate pure foods. Obviously American milk contains steroids and probably other crap. I won't drink Soya Milk because of the chemicals that might have been used to grow the beans.



Replied On: May 09, 2011 04:34pm
Nick

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Venceremos, I mentioned a placaebo effect with improved outlook.

As many cancers affect the immune system at some stage, the disease itself or treatment. As chronic lymphocytic leukaemia's major day to day effect on us is immunodeficiency a recent overseas post intrigued me.

A recent report at a scientific meeting (excerpts below) observed that CD4+ T cells percentages in HIV-positive patients are elevated by the experience of forgiveness. The neuro-immune connection is now well-documented, and, as a result, it seems plausible that the positive neurological effects of forgiveness could have positive biochemical effects on immune function. A connection with immune function in cancer is discussed.

"Forgiveness Can Improve Immune Function", May 5, 2011
FROM: Society of Behavioral Medicine (SBM) 32nd
Annual Meeting and Scientific Sessions: Abstract
4010. Presented April 30, 2011.
http://www.medscape.com/viewarticle/742198?src=mpnews&spon=12
SNIP.......
A new study conducted in people living with HIV shows individuals who truly forgave someone who had hurt them in the past showed positive changes in their immune status.
SNIP..........
Dr. Owen also defined forgiveness strictly as being a freely made choice to move away from negative cognitive,emotional, and behavioral responses toward a person who caused a hurt and work towards developing positive cognitive emotional and behavioral responses toward that person.
SNIP.......
In bivariate correlations, results showed that greater forgiveness was significantly associated with higher CD4 percentages, whereas linear regression analyses found that this relationship remained significant after controlling for the potential influence of other factors.
SNIP..........
"If psychiatrists want to counsel patients about forgiveness, they first need to understand very deeply what forgiveness is and what it is not," she said. "If there isn't a good therapeutic
relationship between a physician and the patient, “what patients can hear from you when you are suggesting forgiveness is, 'I don't want to hear about it anymore and what's wrong with you that you are not just fine with it.' But that can be extremely violating and potentially retraumatize
the person who has already been deeply hurt."It's also very important to respect a patient's anger, she added, because sometimes that is all a person has.
SNIP..........
Reverend Michael Barry, PhD, Cancer Treatment Centers of America, Philadelphia, Pennsylvania, told Medscape Medical News that unforgiveness is a state where a person retains negative emotions, including anger and hatred, for a perpetrator of harm."This creates a state of chronic anxiety, and chronic anxiety has a predictable impact on a wide range of bodily functions, including the reproductive system, the digestive system, and the immune system," he said. For example, stress hormones, including cortisol and adrenalin, have been shown to reduce the production of natural killer cells ­ the "foot soldiers" in the fight against cancer, he noted. Dr. Barry's own research has shown that almost two-thirds of cancer patients identified forgiveness as a personal issue for them, and 1 in 3 of them indicated they had severe
forgiveness issues, "so we are aware of the emotional pain that many of our patients are in.

reducing stress must not be forgotten!

Nick



Replied On: May 09, 2011 11:06pm
pendle witch

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That is so interesting Nick and makes me think about things that have happened in my own life prior to diagnosis. The biggest being a car accident (hit from behind at speed, leaving me with chronic neck and back pains for 3 - 4 years) and all the unpleasantness of the claim which took four years to sort out.

The hidden poisoned chalice in milk. Why do we think it is good for us? Sales talk, but look up "breast cancer dairy link" or something similar on a search engine and you will come across lots of medical sites advising those patients to avoid diary and proven links with breast and prostate cancer. Basically, cows' milk is intended for calves, to grow into very large animals. it is not meant to be consumed by a whole different species, such as humans. It contains casein, which promotes the growth of cancer tumours. The China Study book will explain it far better than I can.

I see there is a part of this site that is devoted to alternative and other treatments, so maybe we should continue sharing our info there? I have found everything you have both said really helpful and interesting. However, I can't get on the link you mentioned, Nick, on the blogging site. Would you kindly send it to me by email? My address is infocornflower@aol.com.

Thank you both and hope to chat to you on the other part of the site.




Replied On: May 09, 2011 11:12pm
pendle witch

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Oh, nearly forgot. I do still drink, but went off wine over a year ago, before my diagnosis and only drink vodka and soda now. Vodka is just about the purest alcoholic drink you can imbibe! The body also finds it easier to get rid of. It may not taste fantastic, but add some fresh lime and a spring of mint and it can be quite refreshing, especially over the summer.

Give it a go!



Replied On: May 10, 2011 05:51pm
Nick

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pendle witch, here's the link to Prof's website mutated-unmuated.blogspot.com, he leaves a t out of the address , clever it probably symbolises a gene mutation on a chromosone, I often forget that his blog has it's own kareotype. Mutations of mortality the title, you can get in that way. Enter CLL in the search bar and a list of his CLL posts will appear if you don't wish to read all his extensive writing. his post on alternative therapies for CLL gives you his thoughts on the topic from a CLL consultants perspective, he has put a lot of time in providing a wealth of topics, you will be reading for quite a while.

Nick






Replied On: May 10, 2011 10:18pm
Venceremos

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Nick,I understand where you're coming from and technically this could all be true. I had a massive/total bust-up with my family twenty years ago; and it does take it's toll.
In general i'm concerned at the overeliance on american sources of information on here (quack cures?). They [americans] sometimes come out with cliched, preachy bullViolation; and they hardly have a health system to admire. Though i accept they're very good at research.



Replied On: May 11, 2011 10:39am
Nick

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Apologies if I violated, I agree with your sentiment, that's why I suggested Hamblin's writing on alternative therapies for CLL. As he a key UK CLL expert (now retired) I didn't think his opinions could be considered as quackery.

The American post intrigued me, purely that state of mind may have some influence on our immune system, as does exercise and diet. Apparently this can happen in many ways and is often described as a placebo effect. Perhaps not the best example to have cited

Will keep it British, but wonder where we would be without our foreign cousins of all nationalities involved in helping to research for better treatments. I guess we have to be choosy in our sources of information

Nick




Replied On: May 11, 2011 05:16pm
Venceremos

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Nick, you didn't violate; i did[Robert was telling me off for trying to say BS].
I appreciate your posts very much - we can always agree to disagree.
Some of the points you've raised - raise the possibility of Karma. Like most people i've done good and bad things in my life. For decades i've been looking for a spiritual/religous path; but have still not found the right one for me (still searching). The Internet in general can be a bit like the medical encyclopedias of old; and we should all be wary of what's on it (sort out the wheat from the chaff).



Replied On: May 12, 2011 11:36am
Nick

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Thank you Vinceremos, perhaps I have in a way, by continuing a topical conversation in "newly diagnosed" That maybe best placed elsewhere. Pendlewitch suggests we move over to another area on the board, so perhaps will post next time in another section. It's good to talk and air our thoughts either to allow others to share their thoughts or simply seek a little knowledge and understanding.

Stress I am learning is a component of living with CLL and reducing stress not only benefits our general state of mind and health but has a positive effect on our compromised immunities. It is also suggested as one of the possible many triggers that allowed that initial minuscule mutation, that develops into the disease we know and the massive leaps we have to take to live with it. Good and bad actions in the past may promote stress so I see your point, we have to be careful and not suggest that our disease could have been caused by those actions, but maybe release from the continued effects of those actions could benefit us, I don't know. For it is just as likely that a spontaneous mutation occurred and we carried the genetic propensity for this to be able to take place or we came into contact with the wrong chemical agent or external influence. Perhaps it's just bad luck.

I wish you well in your search for the path that suits you.

Nick



Replied On: May 13, 2011 11:02am
Venceremos

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Nick,
First-class, i like you. So which area of the site is the gang moving to then? In my drinking days i'd have a vodka with you and pendlewitch.
My name is Alan. Venceremos is a spanish word that loosely translates to We Shall Overcome.
Look forward to your next post.
Alan



Replied On: May 14, 2011 12:13pm
pendle witch

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I've posted a comment on the alternative, complementary therapy forum, as I think that is more suited to our discussions and we may get other people joining in, who have their own expierences to share. What do you think to that forum?



Replied On: May 16, 2011 02:52pm
Nick

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Thanks Ian, I thought I would post here again as although I was diagnosed in February last year, this is still very recent in CLL terms. Following on topic, I jotted down some thoughts that may help others, what do you think? Pedle witch as a new member I have posted this here as it follows on from my thoughts on stress relief, it may be of help to new members but will spend some time on other sections

Getting past the term watch and wait

Following my recent reading on our suppressed/compromised immunities, what may improve its function and improve our protection against opportunist infection many questions have been brought to mind.

Understanding what may be obvious to some that a well balanced diet and exercise goes some way in helping us live with CLL wasnt hard. But understanding just how many factors there are that may help was. So I thought I would highlight one that is intriguing me, our very state of mind itself and stress relief.

Before we can go there we all have to get past the effects of diagnosis and then come to terms with the disease and the term watch and wait, which the majority of us are handed as a status and a monitoring process to allow us to live our lives.

Reality slowly coming home to roost takes time I think, to allow us to remember who we are and remember whats important. Part of this is understanding how time plays a part in all this. If we use time then perhaps time wont use us, its not our enemy it can be our vehicle. Easy to say when youve lost the choking feeling that diagnosis brings with the fear of imminent danger and change to your families future. Hardly surprising when the fight or flight reaction wants you to react, but instead slowly shuts you down. As no one else appears to wish to react all of a sudden, in truth they get it but you dont yet! Youre now on watch and wait.

You then find that watch and wait as a description of the observational process doesnt help you either and in a way it may assist your anxiety to continue. For the words suggest that you do just that, watch and wait. Perhaps not the best start on our journey?

As so much of medical speak is formed around abbreviation. Would a change of the term assist in the transition? As we have to take ownership of the term and lend it back to the profession every now and then, could we make it our own?

I was doodling with this as a possibility and tried to apply it. For example: Ardent Investigative Monitoring, abbreviated to AIM. A positive verb that could immediately change an initial interpretation of the process. Did you know that synonyms for watch are; gaze at, look at and stare at for example, hardly inspiring.. For wait they get worse; stay, remain, hang around, linger, stop, kill time, pass the time. Is it any wonder that watch and wait can be so hard to deal with in the beginning until you get past the term?

Add a little Self and you have AIMS. So with a little Self Education, Reading and Time, it could be a SERT that you lose anxiety and stress and are able to enjoy life again?

But them whats in a name, perhaps it may just be learning not to wait and in time just do a little living?

Just a thought


Nick w&w and living again




Replied On: Aug 24, 2011 10:41pm
margarets

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I was just diagnosed with CLL today. Very scared. I want to see my children grow up and marry and see my grandchildren. Any positive thoughts out there.



Replied On: Aug 25, 2011 10:15am
Baabee

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Hi Margarets
You will get the ups and downs and fears ........I am still on occasions hit by the fears as I think we all are!
This forum helped me with the best advice ...that was find out all you can, knowledge empowers and then can strengthen you to handle things in a better way.
Recently one of our members put a link to CLLSA and they sent me a pack and info through the post just by becoming a member ..........lots of my concerns were answered,
but regular support you will get by doing just what you have done by posting your fears etc on this site.
. Chin up and check in as you need to .....there're a great support on here.
Hugs
Baabee a fellow CLL member diagnosed last August 2010.



Replied On: Aug 25, 2011 10:46am
tewksboy53

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Hi Margarets
I was diagnosed 8 years ago at 47 but still remember the initial shock
of being told. I was frightened, confused, and angry but you gradually
come to terms with it and life will return to normality as best you can.
Try to remain positive and focus on the good things coming up. It will be difficult at times but it certainly helps me.
If you are watch and wait it could be sometime before treatment is
required. I wish you luck.



Replied On: Aug 25, 2011 12:36pm
Zeno

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I was diagnosed with CLL in 2001. I am fit, 64 today, and still working full time in a busy hospital. I have had a number of chemotherapy sessions for which I have had hardly any time off. So, to answer your question, understand the disease, ensure that you ask lots of questions of your consultant specialist and keep positive.



Replied On: Aug 25, 2011 02:17pm
sassy1261

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Hi Margrets, I know exactly how you feel, I was diagnosed 4 years ago, but my then doctor knew about it 8 years ago and didn't tell me! I have recently gone up a stage, and yes I do get fatigue, but I pace myself and still go out and have a great time. My now doctor put me on Vit D straight away as a blood test found that mine was low and I drink green tea, although a recent study has shown that drinking it does not give you enough of the good stuff and you need tablets which are higher strength. If you have these you have to be monitored because they can affect your liver. I still drink occasionally, eat healthily but have treats as well, and am definitely not veggie. Although I had a bad virus last year, I have stayed fairly healthy, for some time my WBC count went down, but now it has risen and my red ones gave gone way down so my doc actually wants me to eat more liver. I have plenty of fresh oily fish as well. I put my blood getting worse to losing my daughter in february, the shock of that had to come out one way or another I suppose.

Keep positive, have fun with your children and I expect you will be around for some time to come.



Replied On: Aug 25, 2011 03:33pm
jess

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Hi Margarets! It is quite a shock when you first find out your diagnosis.
You will get a lot of support and info. from this forum. I have found it very comforting and helpful to be here.
What are your results? Have you seen a consultant? I have still not had any treatment - I was diagnosed last year. My Dad has had the disease for many years wihthout treatment and he is in his 90th year. It's not all bad news. I am 54 and still have 3 kids school age at home. I know where you are coming from. Try and stay fit and eat healthily - reduce stress in your life. Chin up :-) lean on people for support if need it. 0x0x0
Best wishes Jess Shore



Replied On: Aug 26, 2011 11:52am
Venceremos

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Can anybody help? I was diagnosed with CLL last October [Monitoring Only] by a Haemotologist. What difference (if any) is there between a Haemotologist and a CLL consultant? I asked my GP yesterday to see a CLL consultant, and she was baffled; so am i.



Replied On: Aug 26, 2011 12:01pm
Venceremos

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Hi Margarets,
Get The China Study by Dr Colin Campbell [book]. It'll teach you a lot.



Replied On: Aug 26, 2011 05:15pm
Norfolk wife

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Hello margarets! As you can see from the replies you've had, and other threads on this forum, people's experiences vary hugely. I can add another positive for you. My husband was diagnosed in 2000, aged 55; he had investigations following a raised white blood cell count in a routine blood test. Since then he has a blood test every 6 months which comes back "normally abnormal" as his GP says. Meanwhile he's travelled the world, created the garden from scratch, and seen 5 grandchildren arrive - in fact the first will be 10 next year - and 99% of the time we don't think about it. I know others' experiences are different; but this really can be a disease you can live with for a long time. Take sensible advice and think positively. Good luck!



Replied On: Aug 27, 2011 09:21pm
margarets

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I have the China Study and have gone Vegan! My husband has read the China Study 2X and is very helpful in helping me adjust my diet. I am feeling sick to my stomach, I am hoping that is just nerves of my recent diagnosis.
Norfolk wife, I hope that I am as lucky as your husband and I get "normally abnormal" high readings. Do you mind telling me what your husband's count is. I am stage 0 now, and hope that lasts. Trying to think positive....



Replied On: Aug 27, 2011 09:33pm
sassy1261

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Hi Venceremos, go on the CLL Support site, they have a list of CLL specialists, there are only a few of them in the country, you will find the nearest one to you on their list. Haematologists are ok, but not necessarily completely up to date on CLL treatment. Hope that helps.

Sandy



Replied On: Aug 27, 2011 09:35pm
margarets

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I am stage 0, although I go back this week for the final pathology results. I am finding this very hard to deal with. Asking why me? I feel as if the boogy man is just waiting to get me.



Replied On: Aug 28, 2011 12:12pm
Norfolk wife

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margarets - I'm afraid I can't tell you what his count is - he tends not to keep the letters with his blood test results! He's having one shortly - in fact it's slightly overdue as we forgot to book it, that tells its own tale - so I'll check the figures then. He's emphatically stage 0 and always has been. Of course others are less fortunate; but I honestly think there's a lot you can be positive about, once you get over the inevitable initial shock.



Replied On: Oct 25, 2011 03:56am
Venceremos

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Hi Everybody,
Today is the first anniversary of my diagnosis with CLL (what a day). As you all can probably well imagine: despite being clearly told by the Haematologist that i'm on Monitoring Only; i left the consulting room in a state of shock emerged outside into a beautiful, blue skied day like i was looking at everything for the last time (seems quite ridiculous now). I was even patient when i went immediately to the supermarket (hate shopping; it's hopefully a sign of intelligence, or maybe i'm just a bloke).I'm almost embarrassed that i'm so fit and well; but i've got the Big C.
I'd like to thank everyone on this forum especially Pendle Witch for The China Study, Nick for his valuable input, and last but not least Robert Cork, to whom i'm sure we are all grateful to for this remarkable forum.



Replied On: Oct 25, 2011 10:05am
pendle witch

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Hi Venceremos,

What a year it's been and how well you've done. It's great that you are so fit and well.

I'm going back to the consultant tomorrow to get the results of my blood test. I haven't been for six months, as back in April there was a slight reduction in the white blood cells. I'm starting to get anxious now about tomorrow. Will there be a slight increase, or will it be a huge increase or (hardly dare to hope), will there be another slight reduction? I'll let you know, but meanwhile it is wonderful that Robert has provided this forum for us.



Replied On: Oct 26, 2011 12:23pm
Nick

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Hi Venceremos,

Great to hear youre doing so well, it's not far of my second now. Your words struck a chord, I think I almost tolerated the checkout queue, that didn't last long. LOL
Don't be embarrassed that your fit and well, you have had to come so far to be able to enjoy it. Long may it stay this way! Having places where we are able to meet others, find access to information and share our experiences, helps us to live with this disease. I know my life started to change when I found others. Yes, thank you Robert.

Pendle Witch, good luck today with your results, keep us posted.

Nick




Replied On: Oct 26, 2011 05:19pm
Venceremos

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Hi Pendle Witch,
I hope that your appointment went well today. Thanks to yourself and Nick for the messages.



Replied On: Oct 28, 2011 04:59pm
pendle witch

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Hi Venceremos and Nick,

The white blood cell count has gone up slightly - it was 14.something in April, 15.something last October and it is now 16, platelets are 12. No doubt I was deluding myself, but I hoped for another lowered count this time, so was disappointed. However, the consultant is very happy and says it is stable and he doesn't want to see me for a year, so that is encouraging. Prior to the blood test I had had around of month of highly stressful times with my elderly mother, who had me in tears several times a week. Old people just don't know how nasty they can be sometimes. Ironically, I haven't told her about the CLL diagnosis, thinking she would find it too upsetting, but instead it was me who was winding up upset! Anyway, my brother had a stern word with her and that has done the trick.

So, back to watching and waiting for a year and kidding myself there is absolutely nothing wrong with me. That's how I feel, so long may it continue.

The consultant also said that the way things are going, by the time I need treatment, so I am guessing it will be the same for you guys, he is certain there will be a cure.



Replied On: Oct 30, 2011 01:02am
Nick

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Hi pendle witch,

Good to hear all is stable. Sorry to hear of all your stressful times, good to know you have the support of your brother, hope things stay calm for a while. Such a small increase could have been influenced by stress. It must be reassuring to be given leave for a year, that is a sign of how settled things must be.

It's a hard one "watch and wait" maybe you will in time do a little less of both and be able to forget for a while and enjoy a little living. There are many things going on in research and much appears to be just over the hill. You could very well be one of the lucky ones, your counts seem to indicate this is a real possibility. Good news

Take care

Nick

PS Was your platelet figure a typo?



Replied On: Oct 30, 2011 03:20pm
pendle witch

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Hi Nick,

I thought he said it was 12, but he does mutter. He's never mentioned my platelet count before and I have no idea what it is supposd to be. I know when the white blood cell counts gets to around 100 treatmet is usually needed, when is the platelet count deemed dangerous?



Replied On: Oct 30, 2011 09:40pm
Robert Cork

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Based on my experience.

When your HB starts to fall to 11 or 10 then that's the time for treatment, below this then your body is struggling to keep vital organs in order.

When your platelet's start to fall below the 75 mark then I would be seriously thinking about treatment. However, you body can function with a count of less than 10, but if you had an accident, then your would be in serious trouble. The normal reference range for platelets is 150 to 400.

The white cell count of over 100, then it's treatment time, is a common misconception. How the patient is, quality of life, and HB/Platelets is more important.



Replied On: Oct 31, 2011 12:04am
Nick

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Hi Pendle witch,

It is difficult to be able to remember much said in our infrequent consultations. If you were not able to take notes, you could phone his secretary and mention you were not sure you remembered your blood counts correctly. That way you can get a fix on your White cell count, your HB and platelets. If you are a little concerned this may put your mind at rest.

Robert makes an important point, treatment has it's time but there are many factors other than just WBC, that indicate what treatment and when.
very low HB and platelets can be a factor suggesting treatment. But not only treatment of CLL it can indicate other conditions too. Perhaps a good reason to be sure of your counts. I would think your consultants advice is correct and you may have misheard him/her, it is your life always check if you are unsure,

you can read, Understanding Your Blood Results, at:

http://www.cllsupport.org.uk/uybresults.htm

Take care

Nick




Replied On: Oct 31, 2011 01:52am
Chonette

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pendle witch wrote:
Hi Nick,

I thought he said it was 12, but he does mutter. He's never mentioned my platelet count before and I have no idea what it is supposd to be. I know when the white blood cell counts gets to around 100 treatmet is usually needed, when is the platelet count deemed dangerous?


You can ask for a copy of your blood results every time you see your consultant, their secretary can organize it for you, that way you can look at them at home relax and also keep a record, you can download a spread sheet from CLL Topics and keep your own records to see your trend, I got records of all my blood counts since 2002 when I was first diagnosed.

Another point, they treat the patient no the white counts, each patient is different, someone can have a WBC over 100 and have no other symptoms and continue a good quality of life without treatment, where as others with a lower WBC might need treatment. It is important to consider the overall counts, Hb, platelets etc. and the reasons why the counts are low, one can have a WBC well under 100 but low Hb and platelets due to marrow involvement. Treatment is not based only on the WBC.

Regards
Chonette



Replied On: Oct 31, 2011 09:27am
Zeno

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Nick

What I tend to do is visit phlebotomy, wait for the blood results which takes 3 minutes if it is quiet, examine them and discuss with my consultant. I also keep all my results to compare future bloods. Doing this is useful. For example, I am currently on a supposedly ten day course of G-CSF. I tested my bloods last Friday after only four sessions and the neutrophils were 5.2 which is sufficient to stop the course. I will have another check today to see if this is maintained and consult with day care as to how to proceed. I suggest that you hold on to your results for future reference. It is useful for a peace of mind if nothing else. Fianlly, you are entitled to copies of any of the records kept on you at your clinic. I get my CT Scan reports and can read them sufficiently to know what my progress is.

Good luck with your progress



Replied On: Oct 31, 2011 04:52pm


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Hi Pendle Witch,
Glad to hear that your results are stable. As it was you who recommended The China Study to me, i do hope that you're sticking to a vegan diet (naughty girl if you're not). My own vegan diet can be a bit Blazing Saddles at times; but it's helped make me much fitter and stronger. Five of my key bloodcounts: HB, Platelets, Lymhocites, WBC and Neutrophil have actually notably improved in the past year, and with experience my diet is tasty.
I was surprised that you've not told your mother about your CLL, if she's strong enough you should tell her. It may bring more balance to the relationship, and be literally good for your health. Personally i've found some old lady's to be the toughest boots in the whole human kingdom.
I suffered a personal jolt myself last week. In 2009 i was in hospital for four months, and in Intensive Care for a fortnight [Pneumonia, Pulmonary Embolism, Trachestomy]. Because i have no memory of my admission, and i then woke up in Intensive Care with my Tracheostomy being performed; i thought that they were trying to kill me. I was then transferred back to the ward suffering from ICU/Psychois/Post ICU Syndrome; and was bedridden for three months. Last week i read some of my hospital notes for the first time. I discovered a letter which stated that "a sister" [i've 3] had phoned the ward to tell them that she wanted no further contact with me. For this to happen during so far my darkest hour has shaken me to the core. This all goes back to an eighteen year old family feud.
You might be rightly thinking: who the heck is he to be giving family advice. Live and learn, is the best we can all do.





Replied On: Oct 31, 2011 08:45pm
Nick

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Hi Zeno glad to hear your neutrophils have picked up. I guess we all find ways of being able to access our information. I often have the odd CBC at the GP's which is easily followed up with a phone call, note pad and pen. But you have raised an interesting one. The first port of call when visiting clinic for specialist consultations always starts at phlebotamy followed by often an hour waiting to go in to see the consultant. Having the blood results first would allow time to digest them and then be able to discuss them .

I;ve never seen anyone in waiting with their results in hand first. How did you go about making this happen? it would save unecessary questioning in the consultation.

I've been quite happy keeping written notes at home while my disease is settled knowing that I could get copies of what's on file when I wished to start a file. I guess after two years watching things creep up, maybe now Its time to start. More paper work!!

Take care Nick




Replied On: Nov 01, 2011 12:10pm
Zeno

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Nick

I attend the haematology at the UCLH in London. The phlebotomy department there automatically give the service users their result if they are to see their consultant afterwards. I am not too sure where you are being treated, however, it would seem perfectly reasonable to me that you should be given a copy of your blood results once they are printed off. As I previously said this takes about three minutes depending on the demands of that department at the time. As you say, it is useful to be able to digest the current situation before seeing the consultant so that the right questions can be formulated. My consultant allows up to 45 minutes per patient, depending on the circumstances, to discuss the progress and the next step. Therefore, before armed is worth being prepared.





Replied On: Nov 02, 2011 12:03pm
pendle witch

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Thanks Nick, Zeno, Chonette and Robert,

Thanks for all your advice. I phoned the consultant's secretary this morning and, I don't know if I got her on a bad day, but what an attitude! She told me she couldn't send me the results, I should have asked the consultant when I was there and I'd have to see my GP and ask him to request them and then maybe she would send them out! I pointed out they are my results, but she wouldn't budge. I've just phoned the MacMillan nurse and she was shocked and said she'll print them off for me and send them. She also said all my other results are within the normal range.

So sorry to hear your story Vecermous. What a terrible time you have had. My mother's health isn't good: bad heart, diabetes, kidneys slowly failing and now diverticular disease, so I don't want to add to her misery. Anyway, she's seen the food intolerance lady I saw and after two weeks is feeling massivey better and is good tempered too! Yes, I am sticking to the vegan diet, the only exception is going out/to friends' houses, then it becomes a bit tricky sometimes. So pleased all your results are good.



Replied On: Nov 02, 2011 03:10pm
Domineys

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Hi

My NHS consultant says I have a RIGHT to have a copy of my blood test results and that I can DEMAND it. This should apply in all UK hospitals. Hope this helps!



Replied On: Nov 03, 2011 09:28am
Chonette

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Pendle, glad the McMillan nurse was able to help and you got your copy.
With my first consultant I did have to ask my GP to ask for a copy.

When I was on a vegan diet friends were very understanding and sometime cooked things to suit my diet for everybody or they did not mind I took my own meal to eat with them, I even did that once when we all met at a restaurant, the restaurant was graceful and placed my meal on their serving plate so no one knew it was my own cooking.

At the hospital I had my regular treatments, they sometimes do "Smile Campaigns" training for the staff to be more humane with patients, they do understand that patients are stressed about their illness and need kindness.

I am one of the User Representatives at the hospital and I have found it very useful to help and influence how we are treated.



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