UK CLL Forum, UKCLLFORUM

hi new to forum

Topic Made On: Dec 13, 2008 05:46pm
tom54

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hi my name is tom and I will be 55 in march. diagnosed in Jan 2007 after having monthly blood tests since Jan 2006.
my TWC in Jan 2006 was 11.22 now 16.9.
lymphocytes in mar 06 were 6.3, in Nov 2008 risen to 13.3
both stable around 11 and 6ish until jan07 then risen until Nov
hope this is clear.
been with GP since July but hospital has told them to refer me back if WBC doubles in under a year or it reaches 150.
at that point would it need treatment and if so what?
what is "our" life expectancy? different sources give different figures but majority say dead within 5 years of diagnosis?
its great to found this site.
I have not let it get to me until recently when I seen the rise over this year, in fact I left a job in NHS after 19 years within same month of being diagnosed.
look fwd to hearing from you seasoned members with some advice and facts

regards, tom




Replied On: Dec 14, 2008 03:48pm
Jonathan

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I was diagnosed in 2003 and still here. I had 6 months of FCR in 2006 and I am still in remission, I was only 39 at the time of diagnosis and fully intend of living long past the 17 days I have left :-) Personally I wouldn't worry to much about life expectantcy but that's easy for me to say. Also with the new treatments coming along I wouldn't be suprised if they find a cure the day after tomorrow.



Replied On: Dec 14, 2008 05:27pm
dorsetbabe

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Hi Tom! Welcome.If I have read your numbers right,your wbc's are rising relatively slowly.They would certainly have to speed up a lot for you to be dead within 5yrs of diagnosis wouldn't they?! CLL seems to behave differently with each individual so I would think almost impossible to predict the future,although the prognostic marker tests that are available give an idea of whether you have a more aggressive type or not.I had them done on the NHS and luckily they all came back good,but it was risky really as the opposite could have happened and then I would have had to deal with a possible poorer prognosis.I was diagnosed Sept 07 at 52- I also work for the NHS! Take care..Marg.



Replied On: Dec 16, 2008 02:55pm
ronnie

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Tom - good to hear from a new member. I am your age - 55 in Feb 2009 and diagnosed late dec 2006. It was not a great Chriistmas present to have! Especially as I delved into whatever info I could find and scared myself rigid with the life expectancy figures. Such figures are based on sample historical cases and often bear no resemblance to each individual. I had the prognostic tests done but to be frank probably which I hadnt. I was also stable this past 2 years (white count steady at 40ish) and expected to be in the smouldering bracket where it would hardly impact my life. So it was a shock to find I have 2 of the worse indicators - unmutated IVGH and -11q deletions. Basically these 2 markers put me in the aggressive bucket and if I read life expectancy stastics there then I start ot panic. but we are all different and my consultant says my markers indicate I should be needing treatment by now whereas I am still feeling fine (touch wood!)and on (more) watchful wait. Furthermore a result not available at the time - ZAP70 - has now come back negative which bucks the trend of the IVGH. Its all a learning curve all this but the message is try not to worry and certainly dont let scary life expectancy figures get you down. I,m just getting over my recent news a month later so I know its hard but we are all individuals and anything can happen. All the best and take care

Ronnie



Replied On: Dec 16, 2008 05:29pm
cranwellpoacher

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Hi Tom.My names Andy and I also work for the NHS !.I am 42 and was diagnosed with CLL in August 2006 after a routine blood test showed abnormalities.To be honest the next few weeks after the diagnosis are something of a blur due to suddenly developing insomnia,worrying constantly about my future and feeling as though the end of the road was near!. I therefore have decided to not get involved in "statistics" and speculation, these i find can do more harm than good, instead I have pretty much thrown myself into raising cash and awareness for both Leukaemia Research and Anthony Nolan. In the last 2 years, with the aid of my trusty 21 year old VW Scirocco I have (with the assistance of many!) managed to raise over £3000 for LR, and my next aim is to establish bone marrow donor/recruitment sessions within the trust that I work.I am also getting involved in establishing a cord blood "harvesting" facility at my hospital maternity suite...hoepfully, and also I have set up some web pages and blogs to spread the word :-)...phew, no time to be sick and TBH i find that it is my chosen form of "therapy", so until things get more "interesting" down the line, this is what i fill my time with, as well as being a father of 3,husband and medical engineer :-)
Take a look at my new group on facebook cord blood 4 treating leukaemia, and also have a gander at my blog www.scirocco2morocco.blogspot.com

I recently attended the funeral of a little boy called Joel Picker-Spence in Newark, Notts.He had battled his ALL for three years, and died 6 weeks short of his 7th birthday.I want to try and make a difference Tom, i want to try to make bone marrow donation as common place as a blood transfusion, and even if i fail at least i can fail with the knowledge that something i did may help those who come after me.....Take care :-)


Joel Picker-Spence RIP :(



Replied On: Jan 29, 2009 04:24am
macone

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Hi all
diagnosed today at a bit of a loss will be back later



Replied On: Jan 29, 2009 11:58am
cranwellpoacher

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Hi Macone.I know how you feel, honestly.I was diagnosed in 2006 at the age of 40 and it came as a complete surprise.I thought i was anaemic !. Please try not to worry, and if you need to talk just post here and you are sure of a lot of support and information.Andy



Replied On: Nov 20, 2012 02:05am
Buddyboy

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Hello to everyone, new to the site, and hoping to feel less alone and scared. My husband was diagnosed with cll in November 2010. With a wait and watch approach, by the time treatment should have started in the following spring, he needed open heart surgery for a faulty heart valve, he made a good recovery from the surgery. treatment started in July this year with one course of chemo, Since then he has been neutropenic and has spent the last five months in hospital except for an odd few days. His consultant doesn't want to let him home until neutrophils come up, which at this rate could be never. Has anyone else had a similar experience ?



Replied On: Nov 20, 2012 09:32pm


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Hi Buddyboy
Sorry to hear about the problems your husband is having,but maybe my experience will help you in some way. I was diagnosed in October 2010 and began treatment February 2011 for 6 months, I sailed through that, but became neutropenic soon after. Since then I have spent a week in hospital on 4 occasions with a fever and neutropenia often with 0 neutrophils,only being sent home when the reading reached 1. From the end of chemo to a neutrophil count of 2 to 3 has taken 11 months. I still have a nebuliser and IV/IG, and my lymphocites are struggling, but otherwise life is back to normal. At times I thought my neutrophil count would never improve but gradually it did! Keeping active and plenty of fresh air seems to improve my results. So good luck to your husband and keep positive.



Replied On: Nov 21, 2012 10:37am
lartington

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sorry to hear of people's problems, especially as it is such a gloomy rainy day.

My husband has been neutropenic several times, it is not a good place to be...... howev er, there is an excellent film funded by MacMillan Nurses called "Preventable death" it is very good common sense. I never leave my husband for more than a few hours, never go away overnight, because he doesn't seem to know when he has scepsis, he thinks he is simply tired. His sepsis is not as a result of chemo but high prednisilone. He has a letter from the hospital caring for his cll which we always carry, it states his name, condition, and likelihood of sepsis, urging for him to be fast tracked through a and e and have urgent blood tests.We also try to head to a hospital with a haematology ward if we are away from home. I also have an up to date detailed state of his condition. current medication, brief history, he has three serious chronic conditions, I find this very useful. I always give a and e a copy for records. I also - this sounds pathetic - take into the hospital everything he needs to eat during his stay. He loathes hospital food, at least he will eat my flask of homemade soup, homemade bread, stewed dried fruit, and washed fresh fruit. We battle on don't we?? there are still many smiling faces every month at the day unit......chin up.



Replied On: Apr 22, 2014 09:27am
Sunflower

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Hi to all. I am a newbie on the CLL scene, been diagnosed a week ago. I went in for a routine operation (gal bladder removal), but were informed afterwards that I tested positive for CLL by blood tests & a biopsy taken under general anesthetics. I consider the op now as a blessing in disguise, otherwise I wouldn't have guessed, although I started to feel extremely tired lately and struggled to cope with my work, but thought it was the infection the gal bladder caused. I am female and 56 years of age, and am completely taken a-back by this news. I realised that my road forward needs / have to change, but I wish for someone with some experience in this, to assist or give me some guidance here. My work involves long hours on the road (I work for myself), involving also hours of strenuous physical activities, highly stressful most of the time (I put a lot of pressure on myself, due to my A-type personality), working almost 12 hours a day, and is in a constant situation where I need to work against time, including offering a high quality of work. Besides the possibility of no or fewer income, due to reducing some of my work, my focus and concentration are not what it used to be. I have no insurances to cover my expenses (motor vehicle loan, as far as I know, etc), and will loose my professional accreditation if I stop working all together. I love my job, but must make some decision, for I know I am facing a cross road. I do not know what my bloodcell count or any statistics are the moment, but was told to keep an eye on myself, stay away from places which could increase my change for infections, and go for regular blood tests. My motivation for the future is rock bottom at present, and I so much wish someone out here could tell me what to do. Even if I reduce the amount of work I take on, I will still have to travel long hours and endure the physical challenges of the job. Thanks for listening and reading.



Replied On: Apr 23, 2014 07:09pm
wendyjane6

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Hi Folks. Just wanted to share my good news (hope it helps someone) that I'm in full remission after my first round of FCR. I was diagnosed back in 2010 at the ripe old age of 43, but did not need treatment (watch and worry is great) till Jan 2013. During my time having treatment I met so many great people have various types of chemo for all types of cancer. One thing that sticks with me is we have to stay positive (hard I know) and not listen to stats about average treatment times and life expectancy. I know I will have have treatment again at some point, but until then intend to annoy my wife and kids to the full. Stay strong all.



Replied On: Apr 24, 2014 07:54am
Admin

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Posted on behalf of a member.
=======================================
To Sunflower,
You describe perfectly the shock and confusion I felt when first diagnosed, now nearly six hears ago. I received the same advice as you and followed it. Would also add that I found I had to pace myself and plan my activities differently.
I was also advised to watch my diet, put a rainbow on my plate of fruits, vegetables and salads, be active with gentle regular yoga if you can. Yoga helps with relaxation and stress busting techniques. If you have any other health problems always mention your CLL to any medic concerned (particularly helpful if you need to be seen urgently or out of hours).
My hero became Tony Benn, diagnosed in his early 60's like me and as you know recently died more than 20 years later. Clive James has also had it a while.
I was put on watch and wait now called active monitoring and thus far have not needed treatment.
For the last 2 years I have been taken high dose capsules of green tea and turmeric daily. There is some anecdotal evidence that it supports the immune system and is helpful particularly in early stage CLL. Try Natures Best.
make some active choices to stop a few things you really hate doing and choose something you have always wanted to do.
Friends and family have been very helpful staying away if they are infectious.
CLL Support Group is free to join, hold wonderful conferences and the website has loads of practical advice.
Feel for you so much, it takes time to digest this diagnosis, but I can only say that now It is part of my life rather than the dominant thought every day. With every possible good wish, Irene



Replied On: Apr 24, 2014 04:42pm
Mr_Ian_NE

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A warm Hello to the Group,
I’m not exactly new to the UKCLLF as I registered nearly 2 years ago whilst still in shock from discovering I had CLL. I am a 65 yo male (single and white, if it makes any difference) and I celebrated my 65th birthday last month but have not yet retired.
Early in 2012 I suffered from a virus (?) for some 4 months during which time I had fevers, excruciating cold sores on both lips and recurring water infections. Ultimately, I gave a routine blood sample but you can imagine my surprise when I received a phone call a week later from the Consultant Haematologist at my local hospital asking me to come and see him as soon as possible. The rest is as you have all experienced – he told me I had CLL – in my case, Stage “A”.
I don’t recall all that he said at the time as my mind flew to thoughts of my uncle who died of leukaemia not so long ago – he was only 7 years older than me.
Summarising, he suggested 3 monthly blood tests which have changed to 6 monthly as my “counts” showed no significant change in the first year. My next test and consultation is in early June.
After recovering sufficiently, I returned to work a month later and having a sympathetic employer, I worked reduced hours for a long time but being a self-motivated and conscientious person, I overdid things and found myself on sick leave again with what my GP called, Cancer Related Fatigue. After another 4 months absence, I reduced my working week and feel better for it.
I have read most of the Forum messages in the hope of finding someone with similar circumstances as myself but I’ve seen mostly talk of drugs and treatment for sufferers far worse off than I.
I have hoped for a long time to find a CLL “support group” local to my area but have failed so I thought I’d share my case here and if anyone knows such a group in or around the NE of England, I’d love to hear from them.
The irony that I see is that I had been a blood donor since 1968, donating 89 times and have had 2 match tests for Bone Marrow Transplant through the Antony Nolan Trust and now here I am with CLL !!
Thank you for taking the time to read this and best wishes to all.
Ian



Replied On: May 01, 2014 10:05am
Norfolk wife

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Hello Ian and welcome to the Group. I just wanted to say that I understand what a shock your diagnosis must have been; my husband was diagnosed after a routine blood test and no symptoms in 2000, and I well remember the impact the word "leukaemia" has. It is quite clear to me that CLL has extremely different outcomes for different people; in my husband's case he has been on "watch and wait" with 6 monthly blood tests for 14 years now with no sign of any change. He deals with it by ignoring it. I know he is lucky compared with others who use this site; I hope the same will be true for you.



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