UK CLL Forum, UKCLLFORUM

at a loss

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: 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



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 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 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 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



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 12, 2010 06:13pm
kestrel

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Hi,Everyone just thought I'd bring you up to date.I emailed a letter of concerns to PALS at Basildon hospital cc.to my GP,and Leukaemia research.expressing my dissatisfaction at being kept in the dark?Within two hours I had phone calls from both my consultants secretary wanting to arrange an appointment to disscuss my case asap?Then a call from my GP offering to get me a second opinion.I arranged an appointment for next week with current consultant thus giving him a chance,but if I'm not happy with what he has to say then I shall seek a second opinion.I would like to say thankyou to you all for you advice and support.Regards Lee



Replied On: Mar 13, 2010 02:55pm
sylvie

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Lee, I'm so glad you've taken this further and now have a choice. Even if you chose the 2nd opinion, your first hospital consultant and GP will never behave in the same way to a patient again (hopefully), so this is excellent for the patients that will come later in Basildon Hospital and yourself if you decide to stay.
A few years ago (quite a few!) at a patients' CLL meeting in London (were you there Eileen/Robert?) Some of the doctors put on a scenario with actors pretending to be patients. I think it was called something like 'breaking the news'. It was an eye-opener to be sure.
Regards, Sylvie



Replied On: Mar 19, 2010 08:04am
kestrel

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Hi,everyone I thought I'd bring you up to speed.Iwent to see my consultant who after my letter to the hospital he was eager to explain all,and I spent around half an hour going through things which has given me more choice.I was told there are two types of chemotherapy to consider.(1) Is the tablet chemo,and (2) Is the Intravenous.which I am told is a deeper longer lasting treatment.Does anyone have any knowledge or experience of any of these and the affects.Regards Lee



Replied On: Mar 21, 2010 12:55pm
sylvie

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Hello Lee, It's hard to give a reply considering tablet or iv chemo without knowing which chemo they are going to give you. If it is Fludarabine, then I can advise that I have had Fludarabine by the iv method. Firstly with cyclophosphamide under the CLL4 trial. The second time I had both of these drugs + Rituximab. I was lucky like you to chose whether to use iv or pills. I chose the iv method because 1)I have difficulty swallowing pills, 2) the drug would be dispersed around the body quickly as opposed to going straight to the tummy, 3) With the hospital giving the iv as a day patient I felt they were in control and any worries could be dealt with on the spot, such as sickness etc. However, you have also to decide on the pills such as easy to take and no journey to the hospital for the drip (3 days a week each month). I had a 3.5 year remission with FC the first time. I know others on this forum who will advise you of their experiences of Fludarabine (if this is the drug your doctor is advising). Best wishes, Sylvie



Replied On: Mar 23, 2010 08:29am
kestrel

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Thankyou Sylvie for your reply.At this moment I dont have any problem taking pills,but your comment on iv and being in the hospital has given me food for thought.As you say any problems can be dealt with ie:side affects.I'm gaining knowledge as I go along,so when the time comes I will be able hopefully to make an informed choice once again thankyou for sharing your experience.stay well...regards..Lee



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