UK CLL Forum, UKCLLFORUM

Discharged as CLL patient from my local clinic

Topic Made On: Nov 04, 2015 04:22pm
Sunflower

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I have been diagnosed with CLL about 2 years ago, and went for regular 6 months blood tests and check-ups to our local NHS clinic. My WBC (11/2013) was 15.6 and is now, two years later, 25.8. My Lymphocytes result, was 9.6, and has increased to 24.8 with the newest tests. My platelets also dropped from 366 down to 208. About a year ago I had swollen nodes below my chin, but these have subsided nicely lately.
Besides all of the above, and other CLL-symptoms which still prevail, the CLL clinic discharged me out of the blue, telling me I am 'fine', and I need only to see my GP when I might feel not quite on par. I do not need to get another blood test soon and was not booked for a next appointment. Although I do feel OK most days, I do get these extreme 'tired attacks' occasionally, but was told 'that has probably got nothing to do with the CLL'. I am confused. I do NOT suffer from depression or any other conditions which could cause me having these tired-attacks. In a sense I am over the moon with the news for been discharged, but on the other hand I am very worried, for my blood count is definitely NOT normal. Does anyone else had a similar experience with the NHS recently? Any recommendations? Many thanks. (I am a woman and am 57 years old)




Replied On: Nov 05, 2015 07:56am
Admin

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I have also been discharged in a similar way from the Hospital, I think they are doing it to get the “success rates” up. I am not sure what to advise you but if you get any constructive information please let me know? Good luck in your quest and health. God Bless you. Martin.



Replied On: Nov 06, 2015 08:51am
Suziequsie

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Hi Martin and Sunflower
I was missed for 6 months due to lots of changes at my hospital so therefore my 6month check up was 6 months late. I have a new consultant now that suggested I be transferred back to the GP. I didn't have a say in it and when I suggested that it maybe ought to be a two way discussion, she seemed rather narked.!!How dare you stand up for yourself!! I do not have faith in my GP to be able to pick up when I may need treatment . Have been let down badly on a couple of occasions so very little faith in him. Sloppy care. I have asked that my care be transferred to a CLL specialist with a particular interest in CLL ( out of area and gave her a couple of names of world leaders in their field.........didn't go down too well )so that I may be treated properly and given the care I deserve. We really need to stand up for ourselves without being rude. No one has more skin in these decisions than we do so I'm not prepared to be processed for the sake of national statistics . Grrrrr I have 3 small children so will fight my corner if nothing else but for them and so that they have a mummy for as long as possible



Replied On: Nov 06, 2015 09:19am
Yanni

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Hello Sunflower
the swollen node activity and increase in your WBC @ 25.8 and especially the lymphocyte increase @ 24.8 brings the Lymp % to 96% that should actually be below 55% ideally closer to 40% in a normal state, so transferring you from the hospital oncology to your GP at this point does not make any sense, unless they feel that your GP can treat another condition which may be driving your Lymphocytes up, possibly bacterial/viral infections that haematology does not treat.
I will ask them to put their reasoning in writing to you.
I have to add I am 60 year old male I was dx back in 2009 I was in a very bad state with skin cancers septicaemia etc by 2011 but only reached 20.6 WBC at that stage I started with a ketogenic diet program with high Vitamin D3/Magnesium intake, I found previously that the tiredness was at it's worse when consuming any sugar/starches/wine etc, eventually it became obvious to me that the sugars etc were driving my counts up and finally I have connected my so called CLL to a bacterial infection from a 34 year old gold cupped tooth and finally have got my Total WBC in the normal range since the extraction but the lymphocytes are at 57% so not perfect yet, interesting enough the flow cytometery CD markers that served to dx my so called CLL are also applicable to chronic periodontal infections issues.
I hope I am not right but they may be passing the responsibility to your GP of their non action during the time wasting Watch and Wait episode that allowed the infections to increase your counts to this state.
I will ask for a explanation in writing and ask if the tiredness is caused by bacterial infection. I hope the move is for the possibility that your GP can help you where the Oncology training does not allow them to help you.
There is presently a trial on CLL with antibiotics treating infections as the source they state: "Doctors are not sure what causes symptoms to develop. But researchers think this may be linked to infections Open a glossary item. The researchers in this trial want to give a short course of antibiotics to people with early CLL to find out if this might be true" http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-using-antibiotics-for-chronic-lymphocytic-leukaemia-the-clear-trial
All the best health wishes
Yanni



Replied On: Nov 06, 2015 01:42pm
Mikeje

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A quick search online revealed a draft document from Croyden nhs dated 28 Aug 2013 where they proposed returning stable stage A CLL patients to their GP with the same frequency of monitoring and referral back to the secondary care if the patient deteriorated.
Dont know and cant see any further documentation on this or any reference to other nhs trusts.
Personally I dont care either way if I am symptomless but I am sure that the GP wouldnt have answers to any specific questions and currently my GP is taking appointments for almost eight days ahead.....To me it would seem more efficient to have a quick visit with a hematologist who has the answers or knows the tests that may be needed rather than with a GP who has fit you in between Mrs X's menopause side effects and Mr Y's fungal foot infection. Ove rthe last few years, my GP has also not followed up on any requests by the hematologist and it has been left to me to chase them.
Mike



Replied On: Nov 08, 2015 08:08am
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Fantastic information Yanni, thank you. Martin



Replied On: Nov 24, 2015 08:07am
Admin

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Well folks I have had CLL for 10 years and still get seen every 8 weeks by my haematologist I also have a very understanding Doctor who diagnosed my CLL I live in Northamptonshire and my service I can't complain about x



Replied On: Nov 24, 2015 11:10am
JAYNEC

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I am referred back to my GP for 12 weekly blood tests and when I get my results they don't seem to know what they are telling me. When I get my next results I will post so that someone can explain them to me.

My oncologist was fantastic who I saw first the last two I saw weren't so informative, but they did sort of answer some of my questions cause lets face it when you are newly diagnosed you have a few questions. I haven't seen the same person twice yet!

Cindy



Replied On: Nov 24, 2015 11:20am
JAYNEC

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Sunflower,

I am newly diagnosed last December, I saw three different specialists two of which worked under the first person I saw. I realise there are lots of people out there worse off than us but when you are first told you need to speak to someone who knows what they are talking about.

I have a good day and then I can have two or three tired days. I can have tired days all week and then have a good week of two. But the GP says its the CLL and the Consultant understudy says its the Diabetese??

Others on here agree that its the CLL...

I am now on 12 weekly checks with my GP but as I said above they don't seem to understand the results.

If you look at my newly diagnosed and new to forum post on the general page I have actually posted my previous results. Can't remeber what they are of the top of my head, but was 10 last December and I am now over 20. I am due a blood test tomorrow with results next week so will post new results then.

Does anyone get bloated stomach or cramps in stomach, painful bones/back?

Interested in other symptoms??

Cindy



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