UK CLL Forum, UKCLLFORUM

White Blood Cell Increase

Topic Made On: Feb 08, 2012 08:22pm
lesleyandrea

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I was diagnosed with CLL just over two years ago and put on Watch & Wait. My Consultant has only ever been prepared to give me the minimum of information telling me not to worry. In my first year my white blood count was 18, the second year 21 and I fully expected my third appointment to be middle 20's. However the count has shot up to 61!! I feel quite healthy apart from extended coughs and colds when I am unlucky enough to catch them and 'sweating' and my Consultant still tells me to go away and not worry. His only consession has been to put me on three monthly appointments. Has anybody else out there had this experience?




Replied On: Feb 09, 2012 10:18am
sassy1261

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I really think you should change your consultant. Everyone with CLL has a right to see a CLL specialist. There are not a lot of them, but you will find a list on http://www.cllsupport.org.uk/ Quite honestly anyone recently diagnosed should have 3 monthly appointments for the first little while to see how they go and you should always be told your results, thats your right. Do you know which deletion you are for example from a FISH test and that is an indicator of how quickly you might progress. My specialist has always said that didn't matter what my WBC count was, as long as it did not double in six months. I don't know whether that has changed or not. Anyway, read up as much as you can, http://clltopics.org will give you a lot of info, and don't be afraid to demand your results, as I said, it is your right.



Replied On: Feb 09, 2012 02:25pm


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Hello Lesleyandrea- I know your Puzzlement
I was told August 2010 with count of 12 and treated as you--,watch and wait with 6month appointment !
but when blood result came through they brought forward to 3monthly because it was appearing to double up quicker than anticipated.
I like you was and am reasonably well for 73 yr old apart from vascular problems and angina..........
CLL symptoms / fatigue, intermittent sweats, and extended coughs etc !
However I have been told for the last 2 visits that treatment should be on the cards at the double up rate!
It was 88 in Dec 2011 .
He was thinking of making treatment start then-until I asked if I could get back on my feet for a little longer- he said he advised a 2 month return visit , (giving me time to recover from a nasty fall down stairs followed by flu and extend cough).
I return on the 14th Feb 2012 for possible treatment plan.
I have felt very comfortable with the oncologists treatment overseeing my direction......
Even though I'm trying to keep reading/understanding,
he is always prepared to explain and take time to answer my
queries.
I have been so grateful to this site and everyone's input, along with links to CLLSA etc.
.
I guess we are all different with how we perceive and cope with this 'good cancer'
But I found the booklets and printouts from CLLSA and the ongoing updates from Chaya
gave me an understanding, extending the comfortable welcome this site and it's members afford.
Perhaps if you have a list of questions on your next visit it may help as the Dr's/Consultants are obliged to give you the answers when asked ---worth a try!
Good luck and take care !







Replied On: Feb 09, 2012 08:21pm
lesleyandrea

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Thank you Sassy, for taking the time to reply. Your comments make me realize how little I know. I think I've probably taken the line of ignorance is bliss!! In my defence I've trusted my Consultant who has played the whole thing down since I was first diagnosed. In fact on my first visit he told me to 'Go away and have a good Life'. I'm only doing 3 monthly visits because after WBC trebled (61) he advised a 6 monthly visit. It was only when I went away and thought about it rationally I phoned his secretary to try and speak to him to clarify the situation, and he wouldn't speak to me but asked her to make an appointment for me in three months. The ironic thing is I'm generally an assertive women (I run my own business) but in this instance I just seem to be a pushover. I think it's because I want to believe there's nothing to worry about. Time to put on my assertive hat again and stop putting my head in the sand. Many thanks again.



Replied On: Feb 09, 2012 08:27pm
lesleyandrea

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Many thanks for your reply. I will certainly take your advice and read up everything on the site so I have all my ammunition ready for when I go again in March. I did think about changing my Consultant in the beginning because he had a bit of a casual attitude but thought I would wait until things got a bit more serious! Possibly that time has come Hope all goes well on 14th Feb.



Replied On: Feb 10, 2012 09:07am
Zeno

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I would most certainly agree with sassy1261 comments regarding the freedom of information and about the choice of CLL consultant. As I have said many times on this forum, I am a CLL patient and have been since May 2000. I have been looked after continuously by the same doctor, a haematology expert.

As it happens, this doctor is a reader researcher at the UCL and acts as honorary consultant with a limited number of patients. The rapport is extremely positive and if I have some concerns, I know that I can e-mail him and get a rapid response as to what to do. For example, if shingles appears, I will mail him and suggest I double the acyclovir. He will agree or not as the case might be. In addition, he has a team of highly specialised and competent haematology registrars.

The other angle is to build up a relationship with your haematology nurse. Mine is excellent and I know that I can approach her if I have any concerns by either telephone or e- mail. She will discuss this with my doctor. All this leads to building up trust and using your rights to information. Patients have the right to ask and the right to answers, not get fobbed off. If you are unhappy or unsure about your treatment, opt for an alternative doctor or speak to the Patient Action Liaison Service (PALS) at your local hospital. Also look at the website suggested to find a CLL specialists in the field.


The University College London Hospital has one of the top rating departments along with some others in the UK. My current stage is in limbo. Last year I had two months of ESHAP-R and a short remission period followed by six months BMR treatment. My lymph nodes remain palpable and further treatment might be necessary this year. A further CT Scan next month will reveal all. Otherwise I continue to work, as it happens, in the NHS!

If I can make one final point, there is a lot of web based information about CLL. Some of it confusing and conflicting. It is, in my view, advantageous to stick to one or two organisations. I just look at the Lymphoma Forum, Lymphoma Association, Leukaemia and Lymphoma Association, and, of course, this forum!





Replied On: Feb 10, 2012 12:35pm
Chonette

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Something to remember is what Prof. Hamblin used to say "we do not treat he blood counts, we treat the patient".
If we are feeling well and having a normal life there is no need to treat, but if we have lots of symptoms, night sweats, infections, fatigue, etc. all have to be taken into consideration.
As important as the lymphocytes going up is the platelets and haemoglobin going down, I never had high WBC in my CLL journey as the lymphocytes were all hidden on the nodes and marrow, but my Hb and platelets went down, and that is as important as high WBC.
The more you know the best to help on your journey, and yes enjoy every minute of your life, that is what I did.
I also changed consultants in my early days a couple of times and saw two top CLL experts for advise and treatment.
Lots of things have changed over he last 10 years and patient influence is thee, I get involved in Cancer Network Trusts meetings as a User Representative and I find patients like to be better informed and consultants and specialist nurses help.




Replied On: Feb 11, 2012 01:39pm
Nick

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What support our care teams provide does vary regionally and a specialist nurse as a key worker may not be available; sometimes the consultant is your primary contact to maintain continuity as registrars can change so frequently. In devolved National Health Service systems this may be the case, so being able to develop a good relationship with a consultant specialist who you trust, who will take the time to answer your queries and share in your care is important. Expanding on Zeno’s comments here are sources of information that may help you understand and work with PALS. Also how to access your records should you wish to.

NHS Choices, your health, your choices: http://www.nhs.uk/Pages/HomePage.aspx

Use the search box at the top right of the page to enter what you wish to look for.

For example:

What is PALS (Patient Advice and Liaison Service)? This will bring up a page detailing “How PALS can help” and “How do I contact my nearest PALS”, with many links to different aspects of the service.

How do I get a referral to an NHS specialist? This will bring up a page detailing: Your rights and the referal procedure.
“You are entitled to ask for a referral for specialist treatment on the NHS. You will need to see your GP if you wish to be referred to a specialist in a particular field,"

"Under the NHS 'choose and book' scheme, you can choose the hospital, or clinic, where you wish to receive treatment, as long as your GP feels that you need to visit a particular hospital, or clinic, in order to receive appropriate medical treatment. See 'further information' below for more information about the 'choose and book' scheme.”


How do I get a second opinion? This will bring up a page detailing: Do you need a second opinion? Second opinion from a different GP. Second opinion from a different consultant. How long will I have to wait for a second opinion? With many links to aspects of how and your rights.

“If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They will also be sent any relevant test results or X-rays previously carried out.

This does not mean that the new consultant will automatically take over your care. If you want to be treated by the new consultant, this will need to be arranged with the doctors and hospital.”



How do I access my medical records (health records)? This will bring up a page detailing: Applying for access to your health records, Fees to access my health records and Can someone else access my health records, with many links detailing how to go about things and your rights. Usefull to know how, valuable should you wish to keep a record or port your file.

“Under the Data Protection Act 1998, you have a legal right to apply for access to health information held about you. This includes your NHS or private health records held by a GP, optician or dentist, or by a hospital.”


I understand Zeno’s comment and agree that there is a lot of conflicting information out there, but it is a changing and improving landscape as patients become more web savvy and sources of information are added and updated as medicine and support develops. But narrowing it down to just two may also restrict your access and understanding too. Start with these they will give you a good grounding, but are still very limited. All have good and bad, some are better than others, we often have to take some from each and if we need further information expand our horizons, while always checking that the information is current and relevant to our specific needs and the UK.

But most importantly we should be able to check any medical concerns with our medical care team. Let’s face it we still do have to deal with a lot on our own, that’s why forums like this are so important.

Nick



Replied On: Feb 13, 2012 03:27pm
Baabee

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Hi all what a lot of information and support always gives useful guidance from you all as always!
My last posting was posts15 further up ? For some reason it shown off line haha I assure you I was online when composed but had an interruption by the time I pressed send poof my I'd had gone .

I would just like to thank you all for advice input you share and Lesleyandrea for starting the thread !
Take care all
Hugs Baabee x



Replied On: Feb 14, 2012 03:24pm
lartington

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Hi, I have read with interest all of the above comments. My husband has had cll for around 20 years, he has a missing gene p17- deletion which makes chemo out of bounds for him. I will spare you all the detail, but just to say - anybody unsure of their condition or the service they currently receive, should really be looking to the list of CLL SPECIALISTS. There are not many, they are placed mainly in the south of the country with one or two exceptions. If only for a one-off visit for a second opinion. You can request this thru your gp.



We made the decision 5 years ago to have my husband's care transferred to Bexley Wing St.James Leeds, it is 72 miles from our home, but we are prepared to make the effort every 28 days and GO. I understand all the arguments, physical wellbeing, cost, etc., and it is a long-term commitment, but we have the specialist nurse we can call, an excellent team of haematologist registrars and a Prof who is simply the top of his ladder. Leeds also offers drug trials and are ahead of the game. It is a new hospital, very light and spacious and altho it is not pleasant having any treatment you are in a good place.


My husband did have check-ups in the early days with a general haematologist locally, we always left his office no wiser than when we went in. Full of jargon we did not understand. At a specialist unit all the registrars are dealing with cll all the time, they have a good understanding of your problems, they keep a very detailed record of YOU. You are never rushed, always asked if there is anything you are concerned about, We leaved uplifted. However, be prepared, you might have to wait 2 plus hours for your appointment, the clinics are very busy, everybody is dealt with in the same un-rushed way, so take a good book. best wishes Lartington



Replied On: Feb 15, 2012 09:06am
Chonette

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Lartington,
I just love your post, I have had CLL for 10 years so I sill got some time to catch you up.
Everything you say is right, I too went for second opinion in my early days and I think it did pay off.
Best Wishes
Chonette
dx October 2002
SCT March 2009
doing well



Replied On: Feb 15, 2012 10:30am
Zeno

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Lartington

Exactly as you say, there should be more specialists in the field and it is refreshing to hear that you are having a similar experience with Leeds as I am at the UCLH. It is a great pity tat there is not a greater and more equal distribution of good clinical services for haematology around the country and indeed for other services. Equally, the resistance with expensive treatments does seem to influence the way that some Trusts are operated and where to channel funding for clinical needs. I am employed in the NHS and proud to be a member of it. However, even my Trust is having to find significant savings which is unsettling. In terms of CLL treatment, I am aware that some of the sessions that I have had can cost >£8.5k a time. But then what is the cost of preserving life?

As you have said, it is really worth anyone who has some doubts or gaining insufficient information about CLL to look up the CLL specialist list and make the effort for a one off journey by referral.



Replied On: Feb 15, 2012 10:34am


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Hello all,
Just thought to report back after dreading the idea of treatment,
and this thread being one I could relate too -----helped get me there yesterday.
well what a surprise !
For the 1st time since diognosis something has slowed the increase rate.(no idea what)
Which totally changed the fact of starting chemotherapy wowee!
I know you friends on here will understand perfectly the relief and euphoria I felt .
OK it hasn't cured it,
but it has given me the hope and understanding that there IS a big reason for the watch and wait method !

I have now been give a 2 month watch and wait program,
And I came out seeing the world slightly different,
all because the ever decreasing margin of life suddenly returned the hope I had when I was first told,
DON,T WORRY it could take 20 years before it needs treatment.
Thank you all for your input to this site and others where you know it helps someone even on CLL patient, makes it worth while passing on our experiences.
Good luck all and take care
and a big Thanks from me
Baabee




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