20 Most Recent Posts

Replied On: Mar 10, 2010 09:35am

kestrel

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May I suggest you give Diabetic UK a try they have special insurance covers.The last time I requested a quote for travel insurance it was just over the £100 mark although that was two years ago.Try 08007317431.I do hope this helps Regards Lee

Replied On: Mar 09, 2010 12:28pm

smreynard

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I just phoned Freedom Insurance for a quote and they said it would cost £491 just to insure my husband only for two weeks to Cuba! We already have cover on our Natwest current account policy for everything other than the CLL, so I think it's a bit too expensive especially since he's never received any treatment for it yet.

Replied On: Mar 08, 2010 10:49pm

sassy1261

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Hi Lee, glad you are taking control, makes you feel a lot better. I requested a FISH test 8 months after being diagnosed, the haematologist told me I had already had one. When I asked her when this was carried out, because the only blood tests I had had where your basic full blood cell count she told me it was always done. Turns out I was right, she had never got round to it with me. I have finally requested all my notes and test results. Whatever I find out at least I will know what is going on. I am also doing all the research I can, if anything starts going bad I will insist on changing to a cll spec. Lord, I am such a control freak! Best wishes

Replied On: Mar 08, 2010 12:21pm

kestrel

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Thankyou all for replying to my appeal.
I am taking a list of questions to my GP this week and requesting his help in finding a new consultant.I felt very much alone with this illnes.Whilst I would not wish this on anyone I am thankful to you all for shareing your experiences.Regards.Lee

Topic Made On: Mar 06, 2010 10:31am

Robert Cork

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Just a post to advise of my most recent experience.

Last Sunday evening quietly sat watching the TV when I start to feel very warm. Within an hour my temperature had reached 101 degrees, so I made the call to the hospital and was advised to get in ASAP.

I have to commend the hospital because with the hour I was seen by Haematological Register and then on IV antibiotics within 2 hours of arriving at the hospital.

Over the next 3 days they ran all of the routine tests (CMV, FBC, Cultures, etc) and nothing came back as abnormal.

Conclusion: Infection of Unknown Origin, probably Virial.

I must add that I am 13 months post RFC treatment, therefore still need to be aware of elevated temperatures.

Regards

Robert

Replied On: Mar 05, 2010 10:52pm

Eileen

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Hi Lee and everyone
I can only give the same advice to you Lee. You are entitled to copies of any correspondence including blood tests. It is important to have a good haematologist who is willing to answer your questions. Like Sylvie I always have a list of worries for him and he answers honestly and that gives you confidence. Hope you have good luck and find a Consultant you can trust. Take Care Everyone and keep well. Eileen.

Replied On: Mar 05, 2010 06:06pm

sylvie

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Hello Lee, I had a consultant with a bad bedside manner when I was first diagnosed. I couldn't get any information from him and he spoke to me like 'there, there, you don't want to know all this'. So I changed hospitals. It is easy to do, you just go through your GP. Luckily I was recommended a good hospital with an excellent haematology dept and have been there for 9 years. It is so important to be able to talk to your consultant and I write a list of questions I want to ask before I go. You can also tell your consultant that you wish to receive copies of any correspondence (ie GP). Regards, Sylvie

Replied On: Mar 05, 2010 11:47am

kestrel

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Thanks Ronnie for your reply.I am seeing a specialist at my hospital but he seems to be not a people person and does not communicate well.I shall be seeking another consultant who I speak too and get more information.I'm seeing my GP next week who is great so I seek his advice on how to go about it.When I saw my consultant yesterday he painted such a gloomy outlook,but no time for me to go into detail about what to expect,and I suppose I panicked a bit.stay well,regards Lee

Replied On: Mar 05, 2010 10:30am

ronnie

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Hi Lee. Welcome to the forum. My take of CLL is that everyone is different. My story is that 3 years ago I was diagnosed at aged 52. I eventually asked for tests to be done to determine prognositic indicators. it wasnt good and was told within a year I would expect to be receiving treatment. That was over a year ago now and Im still watch and wait with blood count still remaining stable at around the 42 mark.
So what I would say is yes of course sometime in the future you will likely need chemo but it may not be as soon as you think. So I would advise you not to panic at this stage and carry on as you have been doing. Like you I go for a test and consultation twice a year and almost dread it as each time you think the consultant is going to say its time fopr treatment. Even if it is there are many on here who have had and are having chemo and still getting on with a normal life.

My other advice for what its worth is that you can change your doctor - if its just a GP you are seeing then you can ask to see a specialist under NHS rules. I was going to my local hospital and seeing a consultant who had many patients and like you i found her manner brusque and unhelpful. With the help of this forum I found my nearest CLL specialist was at Roayal Marsden. So I asked to be transferred there via my local GP. Its a 2 hour journey but the consultant and staff are very good and I feel i am in the right hands.
Hope this helps. keep well
Ronnie

Topic Made On: Mar 04, 2010 03:53pm

kestrel

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Hi everyone first timer.My name is Lee I'm a 61 year old male.I was diagnosed with CLL about 6 years ago during a routine blood test for my diabetes.Since then I have been seen twice a year,after having a blood test.The doctor I'm seeing doesn't expain well, allways busy and not enough time.Today I went to see him and was told my white cells have reached a fiqure of 130,and that at some time in the near future I will need chemo.Does anyone know what I should have to expect,sorry if I sound ignorant but at this moment I am????

Replied On: Feb 22, 2010 08:07am

Admin

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I have received another request for a patient receiving RFC, also in Scotland.

If anyone can help please contact me.

Regards

Robert

Replied On: Jan 19, 2010 07:48pm

Swainson

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I attended the scoping workshop representing this forum and below is an update:

The purpose of the workshop was to agree the scope of their study into the possible use of Bendamustine for the treatment of CLL.

It is fair to say that whilst this was not the correct forum (but it’s never too early to start banging the drum) both the haematologists who attended (and myself) supported the inclusion of Bendamustine in their armoury.

The discussion on the scope centred on whether Bendamustine should be compared against Chlorambucil or Fludarabine it was generally agreed that Bendamustine sat midway between the two with FCR still considered as the gold standard treatment for CLL.

So the scope was agreed as: ‘Previously untreated patients with CLL (Binet stage B or C) for whom Fludarabine combination chemotherapy is not appropriate’.

Next step is that the scope is subject to a single technological appraisal and that the findings will be submitted to the minister for approval.

The decision is expected in March when (if it is successful) another meeting will be called which I will be invited to and I will update the forum as and when I have more information.

Jim

Topic Made On: Jan 18, 2010 12:54pm

Robert Cork

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We have been approached by an organisation with the request below. If anyone would like to help then please contact me.

Regards

Robert

Today we are talking to Scottish media about the decision by the SMC to recommend the use of MabThera (rituximab) in people with relapsed and difficult-to-treat (refractory) chronic lymphocytic leukaemia (CLL) in combination with any suitable chemotherapy.

One of the national Scotland newspapers has requested to talk to someone in Scotland who has CLL – we wondered, having come across your website, whether you would know anyone in Scotland who might be prepared to share their story with media today?

Replied On: Jan 06, 2010 11:11am

Seabecalm

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Thanks I appreciate your reply, I lost my husband to cancer 3 years ago, so I dont have anyone to talk to about my CLL, my husbands diagnoises was very late and treatment was not possible, so I'm a bit sensitive. It helps to share information, thanks everyone, good luck at hospital, mine in 3 weeks.

Replied On: Jan 06, 2010 10:15am

ronnie

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The original post referred to AML which of course is acute Leukaemia and not chronic so I would imagine that the survival rates are very different compared to CLL sufferers.
Therefore dont panic if its CLL you have. In any case every patient is different and statistics cannot pssibly reflect accurately every survival rate of CLL. Read too much in to it and you will definitely panic. I am wathch and wait 3 years on with bad prognostic indicators but I feel very well. Hospital next week for the dreaded 6 monthly blood test - fingers crossed! Keep well everyone.

Replied On: Jan 05, 2010 12:17pm

Seabecalm

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Survival rates, I was diagnosed in October 09 with B-CLL obviously stressed and not taking in all Hemo. said to me, I thought he said 8 years before treatment, I'm not having any treatment at the minute, wait and see time, my count in 34, now I wonder if too much information is a worry too many, Im trying to find out as much as I can but find it difficult to take in all in

Replied On: Jan 05, 2010 11:20am

adef

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I'm afraid it probably is. The article does not make clear whether they are referring to all leukaemias or just myeloid leukaemia.

In either case, the statement should be treated with caution when thinking about any one person with CLL. Survival depends on so many factors.

Here are reputable statements from Cancer Help:

For all stages of CLL, on average 44 out of 100 men (44%) and 52 out of 100 women (52%) will live for at least 5 years after being diagnosed. But your own outlook depends on the stage you are in when you are diagnosed. Chronic lymphocytic leukaemia has 3 stages, called stage A, B and C. In the earliest stage (A), survival time is generally 10 years or more. For people diagnosed in the middle stage (B), the survival time is generally from around 5 to 8 years. For people diagnosed in the most advanced stage (C), the survival time is generally around 1 to 3 years.

http://www.cancerhelp.org.uk/type/cll/treatment/statistics-and-outlook-for-chronic-lymphocytic-leukaemia#cll

The statistics about all forms of leukaemia can be found at http://info.cancerresearchuk.org/cancerstats/types/leukaemia/survival/index.htm

Warmth to all,

Adrian.

Topic Made On: Jan 05, 2010 07:03am

Greengrass

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In a piece about the new vaccine trial for AML patients The Daily Telegraph states "Latest survival rates show that more than half the people with leukaemia die within five years of diagnosis".
I don't believe this statementis accurate.

Replied On: Jan 03, 2010 07:48pm

patj

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ask for an Ocuapational Health referral if your compnay has a dept, and look up DDA,Disability discrimination Act

Replied On: Dec 21, 2009 11:24am

Seabecalm

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Your post is most interesting and reasuring, I was diagnoised by chance in October of this year, I had collapsed at home and taken to hospital, where routine blood tests confirmed CLL. I was and am scared, I'v seen the consultant Hemo. at the local hospital twice now and again in September, by bloods (white) seem to be staying at around 34 so I am being told to watch and wait. This is both frustrating and reassuring at the same time. However, I lost my husband to cancer only 3years ago he was diagnoised very late and had no chance for treatment, so you can see why I am anxious. He was only 52 when he died, I am now 55, I will ask for ccopies of the results just to keep for a record, thanks hope you are well