Forgotten about

[dianemil]

I was diagnosed with CLL on 10.9.09, so nearly 10 years ago. I had to see a consultant at first but was discharged so I feel that I am not even a watch and wait patient as no-one is really watching me. I am concerned recently as I seem to get more infections and I have noticed my mean cell haemoglobin concentration has kept lowering. I don't want to bother a consultant since being discharged but worry. Should I be concerned?

[Newdawn Administrator]

Hi Diane,

I see you’re in the U.K. Why isn’t your GP overseeing your CLL and doing regular blood tests if you’ve been diagnosed with CLL?

If you’re Haemoglobin is dropping, presumably the labs are being done?

You really need to insist on the oversight of a haematologist. I’ve no idea why you’re not being afforded this service.

Regards,

Newdawn

[PlanetaryKim]

I think if you are getting infections and your hemoglobin is dropping, that definitely warrants seeing your GP and probably asking for a visit with a specialist. 10 years is a long time to go with no medical follow-up on your CLL - even when you are in watch-and-wait. my 2 cents. Good luck!

kim

[Newdawn Administrator]

Diane,

I see from your other post that you’re having blood tests 6 monthly from your GP and initially had a scan and BMB at diagnosis when the Consultant transferred your care to your GP.

Time to ask to be referred back to the Consultant. Insist on it and make sure the regular infections are stressed.

Newdawn

[AdrianUK]

Totally agree. Excerpt that I would ask to be referred direct to a specialist center this time. If you are well and stable maybe they could see you annually or every six months and agree parameters with the GP in the meantime.

This map gives you a list of centres that have at least some special interest in CLL in that they run the FLAIR trial and hence co operate closely with Prof Hillmen at Leeds who is the top CLL expert in the Uk and one of the top in the world.

Obviously some of these centres are more expert than others but the discipline of following a clear protocol for FLAIR and having to justify enrollment decisions to their colleagues will undoubtably have raised the quality of these teams knowledge and understanding of CLL which will be relevant even if you didn’t want to be in a trial yourself.

If you are interested in going to a really specialist centre let us know which city you are nearest to and we can maybe help you see which centres on this list are the top ones. But this list as far as we have all been able to work our doesn’t exclude any of the main CLL expert sites. The good sites work as a team so it isn’t always necessary to see whoever is your site’s Prof (tho at times had can be very nice and helpful).

Remember at the point of a GP referral you have the LEGAL RIGHT in the NHS to choose who you want to be referred to provided they can provide the service.

The difference between a good hospital which has a dedicated inpatient space for haematology and specialist nurses and doctors on call 24/7 on the end of a phone or in an A and E department can literally be life saving sometimes.

Unless I was about to have a heart attack or stop breathing I would not call an ambulance if I felt really sick but instead a taxi and go the extra thirty minutes to get to my specialist hospital rather than the generic one near me. One time UCLH had blood out of my arm within two minutes of me walking through the door (we were ruling out neutropenic sepsis...)

Anyway here is the map: google.com/maps/d/viewer?mi...

[dianemil in reply to AdrianUK]

Hi Adrian

Thank you, yes I would be interested in going to one of these specialist centres. James Cook University Hospital at Middlesbrough is probably the closest to me and then the Queen Elizabeth Hospital at Gateshead.

[AdrianUK in reply to dianemil]

James Cook has impatient beds and a 24/7 contact number which I believe is vital (Eg if you have a temp and want advice about whether it’s time to come to A and E

See southtees.nhs.uk/services/c...

I couldn’t find any evidence that the lead investigator there had published in CLL but it might be other members of the team have.

Gateshead doesn’t mention a 24/7 contact system but that doesn’t necessarily mean they don’t have it.

The lead investigatir did have a couple of cll publications ncbi.nlm.nih.gov/m/pubmed/?...

As I say the real top expert is Prof Hillmen at Leeds but it sounds like these sites would be working closely with him if they are in the FLAIR trial.

All the best with your search for a good team to reassure you and hopefully you remain watch and wait for a long time to come!

[WinJ3]

At a minimum you should be monitored with blood tests annually.

[Bubnojay]

Diane do you have copies of your blood tests from your GP, you are entitled to them and as you know your haemoglobin you most probably do, what is your lymphocyte reading. The trending of these should provide some indication of progress.

Ridiculous that you are not monitored by a haematologist even if only once a year.

Do let us know how you get on.

Best wishes

Bubnjay1

[eric72]

I was diagnosed in 2009 and kept on watch and wait for 9years before treatment was required. Do go back at least to your GP as it does sound as if your CLL is increasing now and you most certainly should have been seen every 12 months, as I was for years. The very best of luck, regards Eric.

[Newdawn Administrator]

Have you applied for a place at the Newcastle CLLSA Conference on the 19th July Diane seeing as you seem to be in that area. Not sure if there’s places left but it could be a good way to make contacts and learn of resources in the area.

You can apply via the CLLSA website at;

cllsupport.org.uk

Or telephone on;

08009774396

Newdawn

[dianemil in reply to Newdawn]

Hi, Yes I am going to attend the conference at Newcastle

[Sensara]

I was diagnosed 2001 I have been on a watch and wait ever since moved to Spain in 2005 and register on their health care system.

I had 2 lumber bone marrow on 1st visit.Every 2 years I have a stomach scan. Blood test every year,

It is the blood test readings that show if anything is out of range,then you get treated by your own GP.

When I am in Uk and am worried about anything,my Dr will give me a full blood count

The care I’ve had with National Health both in Spain and Uk

Has been perfect.

I Have a consultant in Malaga for CLL

A consultant in Bristol for a new shoulder replacement

From A fall I had in Bristol 2 years ago.every year checkup

I would suggest if you can volunteer for a research programme

I did this for 17 years through this Research programme It was discovered my CLL

I was 51 when I started ,RP 2001 Diognosis with CLL

I am now 81

Hope this is of help to you

[vinnet]

Hello diane

Great to know about your long wnw!!! I am in india, dx oct 2016, on wnw. I will be 68 shortly.

India does not have any cll specialist and it is best to have long wnw !!

Anything special u did to earn this nice long wnw?

Best wishes

Vinnet