UK CLL Forum, UKCLLFORUM

Welcome - Please Read

Topic Made On: Dec 23, 2007 11:50am
Admin

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Welcome. The forum has been redesigned since it's original concept in 2006 and has been populated with a variety of informative threads of common interest. This was done to give the forum structure and feel prior to release.

Please build on these threads, add your own specific questions/answers, and use the board as a normal discussion forum.

Regards

Andy Eileen and Robert




Replied On: Sep 18, 2008 08:50pm
lilica955

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Replied On: Sep 20, 2008 08:39am
Robert Cork

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Replied On: Nov 03, 2008 11:44am
lilica955

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Robert,
I'm so glad to see again on the forum. I hope that every thing will be OK after this round of yours treatment.

Best wishies to all.
Lia



Replied On: Jan 31, 2009 05:23pm
punterscorner

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I am not sure if what I am doing is right I am new to all of this ie: the computer and CLL, so please excuse any mistakes. I am 68 in years but 28 in the head ha ha. I have been living with Myasthenia Gravis for 20 years, quite well as it happens then last year I took a big nose dive and became extremely unwell. after seeing my neurologist. and being referred to an oncologist I get the bad news that I now have CLL as well.What I would like to know is there anyone out their as lucky as me?. Joan



Replied On: Feb 13, 2009 10:47am
Greengrass

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Thank you Robert and Aileen for all your efforts in constructing this superb forum. It's great just to see that you are not alone and a burden shared is a burden lightened.
Best wishes.



Replied On: Mar 22, 2009 09:56am
lilica955

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Replied On: Mar 23, 2009 10:42am
lilica955

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Replied On: Jul 22, 2011 07:22pm
olyocl

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I was diagnoised with CLL March 2010. my blood count is not very high, but now have several enlarged lymph nodes, can anyone tell me what this could mean, my GP is writing to hospital but meantime I am concerned.



Replied On: Jul 24, 2011 01:42pm
sassy1261

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Hi olyocl,
You don't say how many nodes or whether you are seen by someone other than your doctor.
This might help:
It will give you an idea of what stage they think you are at,
http://cancerhelp.cancerresearchuk.org/type/cll/treatment/staging-chronic-lymphocytic-leukaemia
But you really should be seeing a haematologist/oncologist regularly.



Replied On: Jul 29, 2011 01:58pm
olyocl

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Hi Sassy,
Thank you for your reply, I have 3 nodes in my neck, saw haematologist in June and was not due to go back till December,the last time I was there he did not examine me and I discovered 1 of the enlarged lymph nodes myself and GP noticed the other 2. I keep being told by doctors that CLL is not a serious condition, but am concerned at the moment. Will this mean I need treatment.



Replied On: Aug 01, 2011 12:22am
sassy1261

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Hi olocl,
They tell us all the time it is the 'best' cancer to have! but to say it is not serious is very silly, it is different for everyone. You did not give your age and that matters. For example, you should be having flu jabs as it knocks out your immune system. If you are older you should be having them anyway. I am quite gobsmacked that your haemo did not examine you. Did you have a FISH test which shows which deletion you are, for example I'm 13q and likely to remain stable, but there are other deletions which are not likely to remain stable. You are legally entitled to see all your notes and test results. You are also legally entitled to see a CLL specialist if you wish to. I am tested every 4 months and they always send me a copy of the test results so I can keep an eye on my own progress. It makes you feel in control, well it does me anyway. I really would recommend CLL Topics which will give you a lot of information, it really helped me when I was diagnosed. http://clltopics.org/index.php

Hope that helps, but don't be fobbed off, its your body and you have the right to know what is going on. Oh, and don't be worried, if the haemo was happy with a six month wait you are probably only Stage 0 and have plently of time to learn about this stupid disease and arm yourself. I was 58 when I got the symptoms (high white blood cell count, continuous flu, shingles etc). I'm now getting on for 66, my blood count has gone up and I have had some infections that really knocked me out at the time, especially this time last year, but I am still only Stage 0. I have the flu jab every year and my doc insisted on the pneumonia jab, as it is better to have it while your immune system is working a bit.

So, no worrying, demand what you need and get as much knowledge as possible. Then sit back and enjoy yourself, still the best medicine!!!



Replied On: Aug 04, 2011 05:11pm
olyocl

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Hi Sassy,
You say age matters, have been getting flu jabs for a few years as I am 70. The information they gave me last April was thatI have early Stage B cell CLL. Never had a FISH test nor has the doctors suggested it. I was diagnosed after a routine blood test, there is so much I do not understand. I spent 11days in hospital in February this year they are saying I have asthma because of the repeated chest infections, when I asked if it was related to the CLL was told NO. I now have an appointment with the haematologist on 23rd of this month.

Will try not to worry





Replied On: Aug 06, 2011 11:24pm


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Hello olyoci,
I don't know how much you have been able to learn about CLL but these are probably the best places to start.

The CLL Support Association (CLLSA) http://www.cllsupport.org.uk/ is a UK charity run by CLL patients, providing support and education either by their website or through local meetings. If you register they will forward you their literature and that from Leukaemia and lymphoma research (several concise booklets covering much about CLL). Or you can talk directly by phone.

Alternatively the CLL, leaflet and dowmloads can be found on this page of the leukaemia & Lymphoma research site:
http://leukaemialymphomaresearch.org.uk/node/1770

Or you can read the booklet here:
http://leukaemialymphomaresearch.org.uk/sites/default/files/CLL%20booklet_1.pdf

The CLL section at Leukaemia and Lymphoma Research: http://leukaemialymphomaresearch.org.uk/category/conditions/leukaemia/chronic-lymphocytic-leukaemia-cll , keeps an informative CLL news page to start, followed on by topics covering much about CLL in an easy to read and patient sensitive format.(far too little information!)

When I was struggling to take things in and getting word blind. I found the easiest information to take in came from the UK Cancer Research site, http://cancerhelp.cancerresearchuk.org/type/cll/ mind you the site is quite complicated and may take a little getting used to, But there is lots of good information here.

If you access overseas sites Start in recently diagnosed sections and just read what you can take in, and skip over what doesn't, you can always go back when you are ready. Remember although the science is the same. Some of the protocol and treatments are different and prognostic testing is not available to us pre treatment . I am glad you are seeing your haematologist on the 23rd, he/she will be able to bring you up to date and address your issues. Before you meet, make sure you list your recent infections and date them, including those you just lived with!, Also any physical symptoms and changes. Your haematologist may not be as familiar with your day to day problems as your GP. If it helps take someone with you who may help you question the doc, should you overlook things. Often the mind goes blank the words can just go through you. Your companion can take notes for you too.

Don't worry, I now have many nodes enlarged in many parts of my body and am getting more infection. But am still a very long way from treatment. Your asthma may be related to your CLL but could as well be related to other issues. Be sure to raise this with the haematologist.Keep us posted, don't hesitate to ask here what you are unsure of.

Take care

Nick



Replied On: Aug 07, 2011 02:59pm
pendle witch

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Hi Olyocl,

Take green tea supplements, they work wonders on reducing swelling in the lymph nodes. They are much stronger than drinking green tea, just take one a day. You can buy them online at Healthspan.

Hope it helps,

Pendle Witch



Replied On: Aug 08, 2011 05:16pm
olyocl

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Hi pendle witch,
Thank you for your comments, but after reading some of the other comments I started talking green tea extract from Holland and Baratt after my last blood test in June. I am hoping it will have improved my blood count, am having another blood test next week before my hospital appointment, so fingers crossed it will have helped.
Am so glad I joined this forum it helps to get all these tips.



Replied On: Jan 02, 2012 10:00am
Pixie

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Hi I am a new member so if this is in the wrong place sorry. I was diagnosed in 2006 after having pancreatitis. So far it has just been regular blood checks and visits to hosp for check, you are obviously very familiar with all that. I really have not gone into things too much but now the doctors are suggesting that treatment my be getting closer I feel I need to be more involved in whats going on.
I am very lucky in that I have very few symptoms, some tiredness and a slight lack of appetite but really nothing more. I am hoping I can learn from the members on here what they are experiencing and perhaps what to expect and how to be more 'in charge' of my own illness.



Replied On: Jan 03, 2012 05:10pm
Robert Cork

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Pixie

Welcome

Provided you have no symptoms e.g hot sweats, weight loss, fatigue and your blood counts do not, as a rule of thumb, go below: HB of less than 11 and Platelets of less than 100, then you should not need treatment. Remember that your white cell count can be in 100,000’s and this will not necessarily mean treatment.

I know the above is a generalisation and everyone is different, but this is a good foundation to start from.

One other point, monitor you blood counts, you are looking for TRENDS rather than a specific decline or rise.

Hope this is of help, if you need more then please ask.

Regards

Robert



Replied On: Jan 04, 2012 07:04pm
Pixie

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Robert thank you so much for your quick reply.I have not monitored anything to date but fully intend to start.Next appt in five weeks and will be asking a lot more questions than so far.Will let you know how I get on.
regards
Heather (Pixie)



Replied On: Mar 30, 2012 12:53pm
Pixie

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Had to cancel one appointment due to bad weather so have gone three months. Went to hosp last week and for the first time asked for more info and got a print out of my results. These meant nothing at first but I think Im starting to get my head round them, even if I dont know the implications yet althoung I was told I needed to go back in four weeks as my white count had increased.
As I have no previous readings I dont have much to go on, lesson learnt there! I shall be asking more in future and gettings copies of results every time I go.
Results last week were Hb 11.3 WBC 121.5 Lymphocytes 111.8 any comments?



Replied On: Mar 31, 2012 02:05pm
Chonette

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Pixie, you can ask the nurses for copies of all your back blood test, so you can make a spread sheet and have records from time of diagnose, I got all my records from the last 9 years, you can download a spread sheet from CLL topics web site, or email me in private and I send you a copy.
Regards
chonette



Replied On: Apr 01, 2012 08:56am
Admin

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Pixie

What were your platelets? You realy need that number to formulate a view.

Robert



Replied On: Apr 01, 2012 10:48am
Nick

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 “As I have no previous readings I dont have much to go on, lesson learnt there! I shall be asking more in future and gettings copies of results every time I go.
Results last week were Hb 11.3 WBC 121.5 Lymphocytes 111.8 any comments? “

Hi Pixie as Chonette mentioned keeping a chart of your results similar to the one you can see at your appointments if you ask your consultant to show you., does allow you to see how your disease is behaving over time (if you have only just been diagnosed there will be few points to add, information pre diagnosis is also relevant). Plotting a chart is only relevant if you understand your counts and what trends mean. I may have missed when you were diagnosed, how long ago were you diagnosed Pixie?..

How platelet levels and haemoglobin are behaving combined with other physical symptoms (node, spleen and liver involvement, rate of infections, B symptoms etc) and the results from other types of blood tests are necessary to formulate a more complete picture. I did post earlier in this thread a few links that help explain CLL it’s monitoring, treatment and living with the disease. This is a useful link for understanding your blood counts:

http://www.cllsupport.org.uk/uybresults.htm

You mentioned that you had to go three months between your appointments because of bad weather. When first diagnosed our appointments tend to be closer together than this, but over time the consultant is able to assess how settled the disease course is. The more settled the longer the time between appointments.

I hope this is of some help, you will get much support from the group here.

Take care

Nick





Replied On: Apr 02, 2012 05:07pm
Pixie

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Thanks Nick,Chonette and Robert for your replies. Chonetts I will ask the nurse as you suggested and try to get some back info. Nick, I was diagnosed in 2006 via blood tests for something else. My appointments were originally about every 4 to 6 months and have now come down to every three. On my last visit it was reduced to a month which brings me to late April apparently due to WBC increase.
The only symptoms I have had were about three days early January when I was very very tired, may have been totally unconnected I dont know. Robert lymphocytes were 111.8 monocytes 2.4 Thanks all for your interest and help .I want to know more, perhaps I should have done this years ago.



Replied On: Apr 03, 2012 09:34am
Nick

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Hi Pixie

I guess if you haven’t had any symptoms or need you were right to just get on with things and live a little? We all deal with living with the disease differently and require different amounts of information to be able to function. It sounds as if your consultant is on the ball and is closely monitoring you.

You did not post your platelets or other stats; do you know how much your lymphocytes have increased since your last visit? Good luck with your April appointment. Perhaps now is a good time to learn a little more. Consultants don't tend to treat on rising lymphocye counts alone, although when they are doubling under six months this can become an indication. However lymphocye counts can go up and down and the fact you have no other stmptoms sounds encouraging. Other counts coming down are also important that is why Robert asked about your platelets. There are many here who will provide much support.

Keep posting

Nick



Replied On: Apr 03, 2012 04:45pm
Cassie

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Hi I've recently discovered this forum and have found it very helpful so thank you. Let me tell you a bit about myself. I was diagnosed with CLL in Oct 2010 through routine blood test. My lymphocytes were 38 so it was watch and wait. No other symptons except a couple of tiny lymph nodes but by Nov count was 51 and more swollen nodes. So FCR treatment started in Feb 2011. Sailed through this and now 9 months post treatment, in which time I have been hospitalised 3 times with neutropenia. My neutrophil count is rather irratic and have Pent Neb and IV/IG each month.Is this a common problem and is there anything I can do to help improve it? Also I now realise I knew very little about CLL before I started treatment as things happened so quickly and didn't ask enough questions. Thanks for reading this and would appreciate your comments.



Replied On: Apr 04, 2012 06:09pm
Venceremos

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Hi Cassie,
You were diagnosed at the same time as me. I'm was also and still am, Watch and Wait. I'm constantly beating the drum on this site about the importance of diet. I strongly recommend the book The China Study by Dr Colin Campbell. Consequently I'm a Vegan. Whether it's a coincidence or not: my WBC, HB, Lymphocyte and Neutrophil counts have all been going in the right direction, for two blood tests in a row. A vegan diet can actually be tasty, as well as nutritious. The only problem with my vegan diet; is that I've sometimes got more gas than Russia.
Alan



Replied On: Apr 07, 2012 05:55pm
Cassie

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Hi Alan
Thanks for your words of advice. I will certainly read 'The China Study' and have now read some reviews on it. I have been drinking green tea for about a year now and am on a 'diet' given by the Leukaemia nurse. Unfortunately my neutrophil count was down again today so I'm back on anti-biotics and GCSF. My count seems to do better when I have seen more sun and fresh air. It will be interesting to see how your counts progress over the next few months Alan.



Replied On: Apr 09, 2012 03:29am
Venceremos

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Hi Cassie,
What does the diet from your Leukaemia nurse consist of?
You might want to consider taking green tea supplements/extracts which are stronger than drinking green tea [Holland and Barrett].
I've so far found that good old common-sense helps you see the woods from the trees. Reading, The China Study helped me see that.
Just fourteen months before my CLL diagnosis I began a four month hospitalisation [Pneumonia,Pulmonary Embolism, Surgical Tracheostomy]. My weakened immune system may have been a contributory factor. The whole episode taught me that our own original thinking can be just as important; as the medical advice we get, particularly as we're dealing with a manageable but incurable disease. Because my own CLL situation has stabilised/improved, I'm currently on annual blood tests [initially on six months].



Replied On: Apr 09, 2012 03:29pm
lartington

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I was interested to read your post today. I wondered if you might like to read an article in the 7th April New Scientist magazine it is called Retune your Immune System. It is possible somebody will present the article on line if you are not able to find a copy. We are always on the lookout for some magical cure aren't we????

My husband developed Cll about 20 years ago, he was reasonably fit until 2006. He developed Chronic thromboembolic hypertension he was very ill. He had surgery in December 2006 at Papworth for a thromboendarterectomy (removal of clots covering some 30% of both lungs), he was on a life support machine, thankfully made a good recovery. I do think from that time onwards hoever, his immune system has taken a battering. He gets all the usual chest infections. Immune deficiency with chronic haemaphylis influenza
for which he is on permanent antibiotics. During one year he had surgery four times for perianal abscesses with complex fistulas. The last 18 months he has been plagued with molluscum contagiosum on both feet, currently having cautious treatment every 28 days. Most recently he has had treatment on yet another basel carcinoma on his nose. He has had neutrapenic scepsis twice and cellulitis (all of which have necessitated the blue flashing light to the nearest A and E.

He has the missing gene p17 deletion which makes normal chemo unsuitable, so he had steroid treatment which gave him osteoporosis in his spine, he now has 4 fractured vertebrae.

Enough - the point of all this is simply to tell you all, we have had very many down times in the last 6 years. I am sure a positive attitude, a good diet with NO shop bought STUFF, fresh air when you can face it. I think you will find that this is the message you will get from The New Scientist.

We attend an oncology unit every 28 days, seeing so many ill people, much worse than my husband gives you hope and makes one appreciate what we have got. Which reminds me, just 3 years ago on April 1st our only daughter's house burned down, within a year her husband had died cancer........ I am sure stress causes a lot of our problems, so if you can, take a note of the New Scientist report and keep smiling........



Replied On: Apr 09, 2012 03:31pm
lartington

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I was interested to read your post today. I wondered if you might like to read an article in the 7th April New Scientist magazine it is called Retune your Immune System. It is possible somebody will present the article on line if you are not able to find a copy. We are always on the lookout for some magical cure aren't we????

My husband developed Cll about 20 years ago, he was reasonably fit until 2006. He developed Chronic thromboembolic hypertension he was very ill. He had surgery in December 2006 at Papworth for a thromboendarterectomy (removal of clots covering some 30% of both lungs), he was on a life support machine, thankfully made a good recovery. I do think from that time onwards hoever, his immune system has taken a battering. He gets all the usual chest infections. Immune deficiency with chronic haemaphylis influenza
for which he is on permanent antibiotics. During one year he had surgery four times for perianal abscesses with complex fistulas. The last 18 months he has been plagued with molluscum contagiosum on both feet, currently having cautious treatment every 28 days. Most recently he has had treatment on yet another basel carcinoma on his nose. He has had neutrapenic scepsis twice and cellulitis (all of which have necessitated the blue flashing light to the nearest A and E.

He has the missing gene p17 deletion which makes normal chemo unsuitable, so he had steroid treatment which gave him osteoporosis in his spine, he now has 4 fractured vertebrae.

Enough - the point of all this is simply to tell you all, we have had very many down times in the last 6 years. I am sure a positive attitude, a good diet with NO shop bought STUFF, fresh air when you can face it. I think you will find that this is the message you will get from The New Scientist.

We attend an oncology unit every 28 days, seeing so many ill people, much worse than my husband gives you hope and makes one appreciate what we have got. Which reminds me, just 3 years ago on April 1st our only daughter's house burned down, within a year her husband had died cancer........ I am sure stress causes a lot of our problems, so if you can, take a note of the New Scientist report and keep smiling........



Replied On: Apr 10, 2012 03:33pm
Nick

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Hi Lartington how much does the subscription cost? I Also need some stress relief. I guess stress can't help and by the sound of things you seem to have had your fair share. Keep smiling.

Not sure where to post this useful reading. But this very recent article by Prof Andrew Pettitt, consultant haematologist at the Royal Liverpool University Hospital and ex Chair of the UK CLL Forum. Was written for the Lymphoma association it is an interesting introduction to CLL with current information and good support links. A good introduction to CLL.

Chronic lymphocytic leukaemia (CLL) is a cancer of lymphocytes, which are specialised blood cells that are involved in the body’s immune system. Although its name includes the word ‘leukaemia’ (because these malignant blood cells are found in the bone marrow and circulating in the bloodstream), CLL is now officially classified by the World Health Organisation as a low-grade (slow-growing) non-Hodgkin lymphoma.

https://www.lymphomas.org.uk/sites/default/files/pdfs/Chronic%20lymphocytic%20leukaemia%20(CLL).pdf

“CLL is now acknowledged to be a highly complex and variable disease. Much has been learned about its biology over the last 10–15 years, and significant progress has been made in its treatment. These developments have also made the treatment of CLL more complicated. Although the subject can appear confusing, things can be simplified by thinking about each of the key treatment questions as they arise (when to start, what to have, when to stop, what to do next). A good piece of advice whenever there is a decision to be made about treatment is to make a list of the available options, together with their pros and cons, and to discuss these with your medical team. If you are having your treatment within the framework of a clinical trial the decision is often made for you within the guidelines of the trial protocol.”

“Finally, it is important for people with CLL to build up a good relationship with their haematologist and specialist nurse. For most people, CLL is a lifelong disease and much support and advice will be required along the way. Most haematologists will be happy to answer questions, discuss treatment options or refer you on to a colleague with a special interest in CLL if there are any difficult or unusual issues that need to be addressed.”

www.lymphomas.org.uk

It has been well referenced

Cramer P, Hallek M. Prognostic factors in chronic lymphocytic leukemia – what do we need to know? Nature Reviews Clinical Oncology, 2011. 8: 38–47.

Hallek M. Chronic lymphocytic leukemia for the clinician. Annals of Oncology, 2011.
22 (Suppl 4): iv54–iv56.

Gribben JG. How I treat CLL upfront. Blood, 2010. 115: 187–197.

Hallek M, et al. Addition of rituximab to fludarabine and cyclophosphamide in patients with
chronic lymphocytic leukaemia: a randomised, open-label, phase III trial. Lancet, 2010. 376: 1164–1174.

Hallek M, et al. Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia: a report from the International Workshop on Chronic Lymphocytic Leukemia updating the National Cancer Institute Working Group 1996 guidelines. Blood, 2008. 111: 5446–5456.

Pettitt AR. Glucocorticoid-based combination therapy for chronic lymphocytic leukemia: new tricks for an old dog. Leukemia and Lymphoma, 2008. 49: 1843–1845.

Dreger P, et al. Indications for allogeneic stem cell transplantation in chronic lymphocytic
leukemia: the EBMT transplant consensus. Leukemia, 2007. 21: 12–17.


Nick



Replied On: Apr 12, 2012 04:36pm


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Hi Alan
The 'diet' I follow is the 'Neutropenic Diet' in order to avoid any possibility of bugs from food, based on common sense, all well cooked food is fine, fresh fruit and veg must be washed and peeled eg no strawberries,blackberries etc, no unpasturised food, all drinking water must be boiled and so on. I have been on it for 14 months now and will be for some time to come. Would love a slice of Brie or Stilton!
But it's a small price to pay to stay healthy.



Replied On: Apr 13, 2012 09:24am
Chonette

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Another useful article, also by Prof. Pettitt and updated by Dr. Schuh
http://www.cllsupport.org.uk/treatments.htm



Replied On: Apr 13, 2012 10:54am
Nick

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Chonette, thank you for letting us know that Dr Anna Schuh has updated Prof Pettitt’s article Treatment of CLL for us and it is now available on the CLLSA site.
This is a fully rounded overview that patients can understand and is dotted with a lot of practical advice and knowledge important to know.

It was also very encouraging and touching to read The Future.I will post in in the main section as it is an important article to help guide patients.



Replied On: Apr 13, 2012 07:35pm
Venceremos

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Hi Cassie,
I've just read The Neutropenic Diet, it's interesting.
The principle premise of The China Study; is that animal protein effectively acts as an adhesive for most chronic diseases.
For the first six months after I was diagnosed; I went to extraordinary lengths to avoid E numbers. Since I've settled down to a vegan diet I'm totally relaxed about E numbers. My blood counts are improving and I feel better.



Replied On: Apr 17, 2012 12:29pm
Cassie

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Hi lartington
I was interested to read your mention of The New Scientist article on the immune system and have now tracked one down to my local library which should be available next week. I'm hoping to gleen some useful information to help me although I feel time is a main factor.
You and your husband have certainly been through the mill over the years and I feel lucky that I have stayed as well as I am. Good wishes to your husband on his monthly visits.



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