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Replied On: Jan 07, 2009 09:25am

Robert Cork

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Tom

Those numbers look overall very good!!!

Robert

Replied On: Jan 06, 2009 07:47pm

tom54

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thanks everyone for your replies.
robert my other readings to date are as follows

MONOCYTE 0.51,
HAEMOGLOBIN 13.8,
LYMPHOCYTE 13.35
WHITE CELL TOTAL 16.9,
RED CELL TOTAL 4.5
PLATELETES 268

Replied On: Jan 06, 2009 03:14pm

triciagardom

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I asked for the Prevnar pneumonia vaccination at my GP surgery and was refused. I was told that Prevnar is not licenced for use in adults and therefore they could not give it. Does anyone have advice on the best route from here?

Replied On: Jan 06, 2009 03:09pm

triciagardom

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Jenny Murray from Women's Hour on Radio4 had to have both hips replaced 6 months after chemotherapy for her breast cancer and has written widely in the press about - I found out by Googling her name/breast cancer/chemotherapy. I believe that although she wasn't warned explicitly about the risk prior to treatment , I believe that it has been acknowledged that the chemo was contributory to the hip problems.

Replied On: Jan 05, 2009 08:04pm

adef

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Hi Tom.

Is this the news you were mentioning?
http://news.bbc.co.uk/1/hi/health/7803619.stm

"Although interesting, it's still a long way from being a treatment that we can give to patients."

The researchers used a different kind of leukaemia cell ( a myeloid as opposed to a lymphocyte line) so I don't know what conclusions we can draw. Why not ask your consultant when you go for the blood result?

My preference would be for the other parts of the grape that arrive in a bottle.

Adrian.

Replied On: Jan 05, 2009 07:55pm

janee

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Since I was last on the forum I have been diagnosed with arthritis in my left hip instead of sciatica or problems with my spine.I went to see a spinal specialist in October and when he showed me the xrays he had had taken of my hips andleft knee i was gobsmacked.The spine where he thought was maybe the problem turned out to being quite common in people of my age group,my right hip and left knee were both ok but my left hip had disappeared and that was my problem.This specialist registrar then asked questions about my CLL and chemo,and told my husband and Ithat the chemo could be the primary factor on the deteriotation of the hip.
I saw a Hip specialist mid October who ordered a second MRI toactually see for himself the damage caused,I am now going in for a complete hip replacement on the 17th Jan.When I spoke to my specialist nurse she denied that chemo could have caused the problem.There is ,however,some evidence that chemo drugs can enhance arthritis to this degree,the article was in the Health Mail of the Daily Mail.Has anyone else come across this,it would be interesting to hear?

Replied On: Jan 05, 2009 04:15pm

Robert Cork

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Tom

In answer to your questions.

At what levels would tiredness set in?
We all respond in different ways, there is no definitive number to say when tiredness will start to take hold. I know from personal experience that when my Hb drops to below 10 I start to get tired during the day, which results in the need to nap in the afternoon and evenings.


If my blood count has doubled will it mean chemo?
Lymphocyte Doubling Time is just one of the “low tech” indicators that is sometimes used to predict treatment. Remember that CLL resides in many places in our bodies, lymph nodes, bone marrow, spleen and circulating blood, so the blood test is just a small proportion of the total number of cells that exist.

There are better prognostic indicators that can be used to predict treatment:
• How you actually feel can often be one of the best indicators. Tiredness, loss of appetite, weight loss, re-occurring infections, fevers, fatigue, bone pain, abnormal bruising and excessive sweating are possible indicators.
• Your Hb level. A falling count may make you tired and with no energy.
• Your platelet level. Once again there are no definitive numbers, but a platelet count of less than 100 could start to indicate the need to think about treatment.
• Progressive enlargement of the spleen and lymph nodes.

We are all so different in this highly variable disease. In my own case over the last 2 years my white cell count never went over 5, but I needed treatment just recently due to a compacted marrow, falling Hb and platelets. Other people have a white cell count of 100’s of thousands and have never had treatment!

Does leukaemia cells refer to malformed white cells in cll?
It’s my simple understanding that the B lymphocytes cells are malformed in that they just do not die when they are supposed to. Hence we have too many of them circulating in our bone marrow, lymph nodes and blood. They subsequently “crowd out” other cell lines (platelets, haemoglobin).

In summary, if you feel well and your counts are good, you may not need treatment. BTW how do you feel and what are your other counts?

Hope this helps.

Regards

Robert

Replied On: Jan 05, 2009 01:38pm

Swainson

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Tom,

I’ll give you the benefit of my experience; however I’m sure there are many, more qualified than me and I suggest you keep an eye open for other replies as we’re all different and it’s very dangerous to generalise.

Having said that very briefly my story goes along these lines: I joined the club with a white cell count of 50.7 and pneumonia! It took around a year for it to double and top out at 118.6 and this was one of the triggers for treatment to start. Having said that I think the numbers were more of a trigger than the ‘doubling’.

As my haemoglobin count dropped (as the white cells increased) the tiredness started, but during the early days (I walked The Pennine Way with a white cell count of 63) anything under 80 seemed to have little impact.

Can’t help you with the alternative therapy (put all my faith in chemicals!) but I hope the above helps a little – good luck.

Jim

Topic Made On: Jan 03, 2009 04:07pm

tom54

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hi all happy new year

i will have my next quarterly blood test this month which will show if my twc has doubled in last year from 11.22 to over 22. at present it is 16.9.

at what levels would tiredness set in? and if my blood count has doubled will it mean chemo?

recent news reports this week say that trials of grape seed extract has successfully destroyed leukaemia cells in mice and may be used as treatment.

does leukaemia cells refer to malformed white cells in cll?

bought my first supply from holland and barrat yesterday (100mg)

Topic Made On: Dec 26, 2008 11:36am

tom54

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merry xmas and a happy new year to all

Replied On: Dec 19, 2008 10:10pm

adef

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Hi Andy.

I'm sorry that I wasn't very clear.The full quote should be:

'Is your consultant going to enter you into a trial? General consensus is that this is better for patients with CLL in current state of knowledge.'

By this I meant that being in ANY trial is thought to provide better care.Recent guidelines encourage all treatments to be as part of clinical trials where this is possible. As well as providing best care,this would ensure that we gain the maximum useful evidence about treating our condition as possible.

I did not intend to express any opinion about the value or otherwise of Bendamustine as I have no personal experience on which to base any opinion.

Best regards,

Adrian.

Replied On: Dec 19, 2008 01:04pm

andysnat

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I would just like to insert a note of opposition to this conclusion, purely as an addition to the discussion, rather than as any condemnation.

Chaya's comments regarding the introduction of bendamustine into the US by "big pharma" are quite appropriate IMHO. It is charged to the insurance companies at approximately $9,000 per round. Teh Prof estimated that anything more than $500 would certainly be profiteering.

The other point is that the conclusion doing the rounds that Treanda is more effective than Chlorambucil is based on a US study, to provide evidence for FDA approval. It appears that the study DID NOT use an optimal dosage of chlorambucil in the relevant arm of the study. The same thing happened with Fludarabine.

I do believe however that there is a place for Treanda in the heamatologists CLL armoury, particularly in cases refractory to other treatments.

Topic Made On: Dec 18, 2008 04:16pm

adef

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Flu is here folks.This is from the Health Protection Agency Website (http://www.hpa.org.uk/web/HPAweb&HPAwebStandard/HPAweb_C/1222154877315):

'Clinical and virological indicators suggest that influenza viruses are now circulating within the community. The
department of health now recommend the use of antivirals for treatment and prophylaxis of influenza according to
NICE guidance. Further information can be found on the NICE website (http://www.nice.org.uk/Guidance/TA158).'

The guidance recommends making sure your family have been immunised against flu and to take prophylactic medication if you come in contact with someone who has flu.

Although I have had my flu jab the chances that it worked are small - see Terry Hamblin's post about Flu Jab on 3rd Jan.Iam asking my consultant and GP whether I should have prophylactic drugs with me over the annual 'closed' season. Will let you know.

Adrian.

Replied On: Dec 17, 2008 09:59am

Swainson

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Adrian,

Thanks. The comments make more sense when read in conjunction with the ASH extracts.

I think you’re correct inasmuch as Bendamustine isn’t licensed for use in England but as it has been widely used in Germany the consultant seems fairly relaxed about it – he’s also hoping to get the drug for free so no post code lottery involved.

Thanks again for your help.

Jim.

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: 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 15, 2008 06:45pm

adef

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Hi Jim.

I am sorry to hear that FCR wasn't for you.

This American site was recommended to me by my consultant and is not too hysterical!The person writing the review is an academic chemist.Her husband had CLL.

http://www.clltopics.org/Chemo/Treanda.htm

She summarises two papersne about treating newly diagnosed CLL and one about relapsed CLL.
I guess you will need to ask your consultant whether he is thinking of you as a 'failed' treatment with FCR.
There are some interesting comments about the marketing by this company in the states.

The 2 studies she mentions where the abstracts were presented to the AMerican Society of Haematology in 2007, were updated and presented again this year.It may be that your consultant heard the presentation.

http://ash.confex.com/ash/2008/htsearch.cgi?words=bendamustine+CLL&action=search&formaction=http%3A%2F%2Fash.confex.com%2Fash%2F2008%2Fhtsearch.cgi&meetingid=1000&dir=webprogram&override=&restrict=.confex.com%2Fash%2F2008%2Fwebprogram%2F&exclude=|%2Fprogram|%2Fmeeting|%2Fsearch.html|%2Fsession|%2Fprelim&config=ash&method=and&format=builtin-long&sort=score

(if that doesn't work, go to http://ash.confex.com/ash/2008/webprogram/start.html and search for 'bendamustine' and 'CLL')

I can't find any reference that suggests bendamustine has been approved for use in this country.It was approved in the USA in MArch this year.Is your consultant going to enter you into a trial? General consensus is that this is better for patients with CLL in current state of knowledge.

It would be interesting to hear what happens.Good luck with it.

Adrian.

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.

Topic Made On: Dec 14, 2008 05:13pm

Swainson

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Just had a dramatic failure (haemolysis) with my first run of FCR and my consultant is talking about replacing it with Bendamustine and Retuximab – the only info I can get is from some hysterical site in the states and I wondered if anybody had any experience of the this ‘new’ (old east German) treatment combined with Retuximab?

Jim

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.