UK CLL Forum, UKCLLFORUM

Patient Profiles

Topic Made On: Jan 18, 2008 09:23am
Robert Cork

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One of the elements of the new Forum that I would like to promote is that of the Patient Profiles section. I believe that there is a huge benefit to the new members of our community in the sharing of our own personal stories/journeys. I appreciate that generally the British are generally Ďreservedí in our nature and we may feel uncomfortable in the sharing of sensitive information, but I would like to request your help in building this area of the website. Please remember that your story can be added under an anonymous entry to protect your confidentiality.

So, if you could find the time and provide us with your story/journey we would very much appreciate your help.

Your patient stories/journeys can be mailed to me directly and I will add to the website.

Regards

Robert




Replied On: Aug 14, 2010 09:26am
linda50

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Hi I AM NEW TO THE SITE, I WAS DIAGNOSED WITH CLL IN FEB 2009, I AM ON WATCH AND WAIT, SEEING CONSULTANT EVERY 4 MONTHS AT THE MOMENT,AS U CAN IMAGINE IT WAS SUCH A SHOCK TO BE TOLD, I WAS 49 AT THE TIME,SCARED MYSELF SILLY SCOURING THE NET FINDING ALL I COULD ABOUT CLL, THOUGHT I WOULD BE DEAD IN 6 MONTHS,STILL DONT KNOW WHAT THE OUTCOME OR LIFE EXPECTANCY IS,ALSO GOING THROUGH THE MENOPAUSE AS WELL SO NOT SURE IF THE SYMPTOMS I AM HAVING IS CONNECTED TO CLL OR MENOPAUSE, WOULD LOVE SOME INFORMATION FROM PEOPLE, WILL BE BACK SOON, LINDA X



Replied On: Aug 17, 2010 01:12pm
Robert Cork

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Linda

Whilst the initial diagnosis of CLL is a major trauma to us all, there is a normal life to be had with CLL. I was diagnosed 10 years ago and have completed 3 different types of treatment (Fludarabine, Chlorambucil and RFC). I am already now thinking about my next treatment which should be in about 2 years time. However, we are all different, and you may never need treatment (you are female which is an advantage in terms of needing treatment or not).

I know that this is not the view of everyone, but I gained comfort from knowing what my Prognostic Markers are (I accept that some people do not wish to know this). Despite the fact that I have not behaved as indicated by my Prognostic Markers (just shows that we are all different). Therefore, if you want a view as to how your specific CLL might develop I would recommend that you get these checked (just a simple blood test). For more info on Prognostic Markers visit the following thread:

http://www.ukcllforum.org.uk/viewtopic.php?id=46 (the table halfway down the thread provides you with the key markers that should be considered. The other posts in the thread are good discussion points).

Just an additional point, it maybe in your interest to see an expert in CLL. That way you should get the best treatment/diagnosis.

Regards

Robert



Replied On: Aug 18, 2010 12:04pm
MillysDad

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Hello all.

Just joined. Good to have a forum that offers advice, information and support. I am 47 years old and was diagnosed with CLL in July after a routine blood test. Had just registered with a new doctor who thought it would be a good idea to give me the once over. Never thought the results would throw up something like this. I don't get ill or so I thought. Have been to see the consultant haemotologist and diagnosed at Stage A. No symptoms at all and all blood counts are normal except the WC count which is at 19. Waiting for the results of the further tests including the prognostic markers. Should be ready in 8 weeks. She seems very positive about this disease which is comforting but it is very difficult to come to terms with having something seriously wrong and not being treated. Signed up for the 4 monthly review. Suppose there will come a time for treatment but her advice, for the time being, is to go and live my life to the full.
I will post further as and when there is something to report but in the meantime best wishes to all on here.
Cheers

Andrew



Replied On: Aug 18, 2010 12:20pm
jess

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Hi! Would someone be kind enough to give me an idea about my blood results which I received today from the Haematology dpt. Hb16.2, platelets 236, white count 12.7, neutrophils 4.9 and lymphocytes 7.1 I have to go back in 4 months for more tests. I don not have any symptoms at the mo. and feel quite well. Thanks for any help :-) Cheers Jess



Replied On: Aug 19, 2010 04:58pm
olyocl

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Hi! I was diagnosed in March and have been to Haematology twice but they have never mentioned prognostic markers! There is no CLL consultant in this area.



Replied On: Aug 19, 2010 07:05pm
Robert Cork

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Olyocl

Prognostic markers are not that new, for example the IGVH mutational status test was researched over 10 years ago, chromosomal abnormalities and CD38 are a lot older, but these are not regularly used by all Haematologists. Some donít know about them and some donít believe that the patient should be aware of the results (IMHO).

If you let us know where you live, we will see where the nearest haematologists is to you.

Regards

Robert



Replied On: Aug 19, 2010 07:19pm
Robert Cork

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jess wrote:
Hi! Would someone be kind enough to give me an idea about my blood results which I received today from the Haematology dpt. Hb16.2, platelets 236, white count 12.7, neutrophils 4.9 and lymphocytes 7.1 I have to go back in 4 months for more tests. I don not have any symptoms at the mo. and feel quite well. Thanks for any help :-) Cheers Jess


Jess

Those numbers are almost excellent. The only one that is marginally high is the Lymphocyte count. The diagnosis for CLL is a Lymphocyte is greater than 5. Some people have Lymphocyte count of 250000.

Regards

Robert




Replied On: Aug 20, 2010 02:24pm
olyocl

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Hi Robert.

Thank you for your reply I attend Ayr Hospital in Scotland, the only result I know is my wbc which was 17 in June. I appreciate this is not very high.

Regards

Olyocl



Replied On: Aug 20, 2010 07:30pm
Robert Cork

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olyocl wrote:
Hi Robert.

Thank you for your reply I attend Ayr Hospital in Scotland.

Regards

Olyocl


Dr Mike Leach Department of Haematology, Great Western Road, Gartnavel Hospital, Glasgow is about 60 miles away from you.

Regards

robert



Replied On: Aug 20, 2010 07:36pm
Robert Cork

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olyocl wrote:
Hi Robert.

The only result I know is my wbc which was 17 in June. I appreciate this is not very high.

Regards

Olyocl


Olycol

There are two sides to this equation. Some patients have a very high wbc, because most of the CLL is in the blood. Other patients have a low wbc, because the CLL is hidding away in the Lymph Nodes and Bone Marrow.

Myself, I have never had a wbc above 10, but have required treatment because the Bone Marrow was so compacted with CLL cells resulting in my HB and Platelets falling.

Regards

Robert



Replied On: Apr 23, 2014 06:24pm
Christine

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Hello Robert
I was diagnosed with CLL September 2006 unexpectedly as I was admitted with Appendicitis. I was advised with 'your Leukaemia' which was a great shock.
As a then very active 62 year old I learned to ignore it and get on with my life. Enjoying cycling/walking and still working. Now 70 I still enjoy all of these pastimes.

The consultant has said for sometime that I will need Chemo in the near future but as I felt so well decided to monitor my blood every 2 weeks.

The time arrived last week with WBC 172-HB 80-NEUTA 0.5 Bone marrow almost full of CLL
Bendamustine & Rituximab was started. A trial 1st day Benda was ok but the Rituximab tightened my chest and bloated me. It was tried the following day apart from very bloated it went through.

3rd day had the full quota of Rituximab, half way through I was having very tight chest. They decided to slow the flow and I felt 200% better.

Very tired afterwards, bloating took a few days to clear but walking and done 20 minutes on the bike trainer. On a good day today.

We need to keep positive and upbeat. Great news about ibrutinib.

Great site.

Best wishes
Christine



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