20 Most Recent Posts

Replied On: Sep 01, 2010 10:27pm

sassy1261

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Thanks for that. It is now three months later, still have a bad taste in my mouth which stops me eating as everything tastes so bad. Have lost further weight (not that much of a problem as I had some to loose). Had my haematology telephone appointment today, my stats are good, nothing enlarged and although count went up it has come down again, but I still feel weak and tired. Will take your advise and ask to see an immunologist. Good luck both.

Replied On: Sep 01, 2010 08:44pm

smreynard

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My husband is now due to start FCR treatment as his wbc has gone up from 71 to 150 in 4 months. His spleen is also 12cm below the left costal region and he has swollen nodes in his armpits. They have said for him to only have FC for the first month as his wbc is high and that would indicate more severe response to the Rituximab. Hopefully he can have all three from the 2nd cycle onwards. Our health authority (lincs) seems able to fund this treatment which is lucky after reading other peoples' posts.

Topic Made On: Aug 25, 2010 09:23pm

JAWS1

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Hi jaws here,
In addition to my C.L.L. diagnosis and treatments for same, currently about to receive my last of 6 cycles of F.C.R.
commenced in March 2010. First chemo was Fludarabine and Cyclophosphamide given from April 2007 but discontinued after only 3 treatments of a planned 6 due to blackout ? mini-stroke ?
epileptic seizure ? No definitive diagnosis has ever been given.

Replied On: Aug 24, 2010 10:02am

pastongriffin

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Hi, I ended up being treated 2 years after diagnosis because I was getting very frequent infections..and ending up in hospital sometimes. My haematologist was very concerned because they can be a sign the cll is progressing. My spleen enlarged and blood count went up as well. He sent me to an immunologist at Papworth to do serum immunoglobin tests as he thought my immune system was damaged (it was). So yes, infections can be caused by CLL but also drive CLL (see CLL topics website - Viral drivers) I should ask your haemotologist to refer you to an immunologist.

Replied On: Aug 23, 2010 03:02pm

Seabecalm

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Posts: 17

hi,, I have read your posts, as I do most peoples, they are very interesting and comforting( I know thats weird) but a problem shared and all that

Topic Made On: Aug 21, 2010 11:26am

Domineys

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Hi
Hi,
The charity CANCERactive website www.canceractive.com gives lots of help and information about how cancer is caused and what we can do to try to combat it. I heard Chris Woollams (who originated the charity) talk 4 or 5 years ago, and he was inspiring. My husband and I have made many changes to our lifestyle and approach to cancer since then and I am convinced they have a positive result. It feels much better to be doing something positive rather than just waiting for events to unfold. Don't be overwhelmed by all his suggestions - you need to pick and choose what you can do. I shall be posting my profiel. Best wishes to all, Ann

Replied On: Aug 20, 2010 10:02pm

fossil

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Apart from CLL. I have Advanced Degenerative Bone Changes? T12 Disc is a compression fracture, the CLL has gone into my spine. I have coronary heart disease/Stent in the main artery. I am developing cataracts. Lately have had hearing aids fitted. And I have skeletal hot spots?? Other wise I am as healthy as a Pig! But bear in mind that I am 71 at the end of the year. Isn't life great. Keep on smiling.

Replied On: Aug 20, 2010 09:52pm

fossil

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Hi all.

I hope you are all as well as is possible. My recent blood count showed that the Lymphocytes had dropped to 9 and that my WBC was also dropping. For ten years(watch and Wait) It has hovered around the 20/23 mark. In the last year there is a sharp drop in levels. I have no idea what this means in regard to the progress of the CLL? I am 70. Consultant has set a six month re-appointment as against the yearly one that has been the norm.

Replied On: Aug 20, 2010 07:36pm

Robert Cork

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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: Aug 20, 2010 07:30pm

Robert Cork

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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 03:07pm

sassy1261

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Hi Kestrel
Nasal blood is normal with a blocked nose, think it would only be a problem if it was bleeding a lot for a long time. Try not to worry. Its difficult isn't. I put a post on here under infections as I am worried, but so far no one has bothered to reply. O Well.

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

Topic Made On: Aug 20, 2010 09:19am

kestrel

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Posts: 10

Hi,I have been for the last week suffering with felling blocked up in my nasal passage.When I blow my nose it produces congealed blood,not in huge amounts,but for me who nevers suffers nose bleeds its a concern.I did suffer last winter for months with Sinusitis which took repeated antibiotics and steriod treatments to clear.I was diagnosed with Cll around 6 years ago my last WBC was 130.I've had no treatment as yet although I believe its imminent and am seeing the consultant in 2 weeks.I would be grateful for any feedback.Lee

Replied On: Aug 19, 2010 07:19pm

Robert Cork

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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 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 don’t know about them and some don’t 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 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.

Topic Made On: Aug 19, 2010 03:48pm

Seabecalm

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Posts: 17

Hi my name is Brenda, I'm 56, I was diagnoised with C-CLL last
October, I was taken to hospital via ambulance as I was in considerable
pain in my lower back, via a whole batch of blood tests my CLL was
diagnosed completely unrelated to my back pain. I was totally shocked
to go into hospital with a bad back and come out with leukemia.
My consultant only gives me three blood readings when I see him, I
know I have to ask for more, my hb, white cell and red cell, In October
my hb was 12, white 34, red 250, I was put on the wait and watch , and
told they did not expect to treat me for a number of years. I have had
regular blood tests, 6 weekly and the only real change in blood counts
is the white which has steadly risen to 45. However, my most obvious
symtom is in the swelling of under arm glands and my spleen. At times
my underarms are so painful I cannot sleep, and my spleen is not
painful but I am aware of the problem. A CT scan showed the swellings
and a cyst on my liver, I was advised not to worry about this.
I have had periods of night sweats - weight lose and lose of appetite,
I could do with loosing a bit of weight!
I recently have begun to get extremely tired, by the afternoon the
settee is calling me for a nap, and I have to obey.
On my last visit to the consultant he said he thought it was time to
treat the CLL to give me a better quality of life, the treatment is to
start on the 7th September FCR. the Rituximab intravenous for approx 6
hours the first treatment and then a second short dose the next day and
the tablets of Fludabine and cycloposphamide for 3 days - the cycle
will be every 28 days for approximately 6 months.
I am very nervous about starting the treatment, but I so want to be
able to not have the pain of swollen glands everyday all day, I want to
be able to stay up at night after 9pm and I want to be able to put the
CLL to the back of my mind for as long as possible. My husband died in
April 2006 he had cancer but was not diagnosed until it was too late, I
am still grieving for him but I have some very dear friends who I know
will be looking out for me. We have two children (young adults really,
21 and 16 who are very resiliant and as they are young have the ability
to get on with life!!
I will write again after the first course of treatment

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 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

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