Eric W.
Posted by

I'd like more information about when treatment starts for CLL.

Eric W.
Posted by
20 Apr 2016

Treatment for CLL

Hi, my name is Eric and I'm 69 years old.  I was diagnosed with CLL back in 2008 and have been on  watch and wait ever since.  However, recently I have been getting more night sweats and not just at night, but if I nod of in the chair I wake up sweating.  Since November I have had repeated infections of various kinds including, colds, chest infections, frequent nose bleeds, cold sores and I'm feeling exhausted 4 or 5 days out of 7.  What does your blood counts have to be before treatment starts?  I have no heamatology nurse to contact, as many of the CLL patients on here have and my GP dosn't appear to be well informed.  I visit my consultant next week, but to date they have not given me a lot of help or information over the years.  Please help with information if you can.   Eric.   

Comments

26.04.2016

Hi Eric,

Really sorry to hear that  your currently not doing so well. Life for a watch and wait patient can be extremely tough especially when you're so unclear as to if or when the condition may progress to a point where you need to start treatment.

As I'm not medically qualified and unaware of your case I'm unfortunately not able to advise you on when you might need to start treatment. The only person who will be able to do that is your consultant and/or your clinical nurse specialist although it sounds like you might not currently have access to one of these?

Given your increase in night sweats and repeated infections it's understandable that you're feeling anxious that the CLL has progressed. I think it's really important that you tell your consultant all of your symptoms when you see them this week and that you also talk to them more about your treatment plan as a whole and what your levels are currently as it sounds like you're not being informed as much as you'd like to be.

When you see your consultant do also ask about whether you have access to a clinical nurse specialist as they are there to help support you and answer any questions that you may have.

In more general terms consultants try to keep patients treatment free for as long as possible. The decision itself on when to start treatment (some never have to start treatment) is based on your staging and a numboer of other factors including a worsening of anaemia, a rapid increase in the white blood cell count, enlargening of the spleen and lymph nodes, severity of sweating and a weight loss of 10% more.

None of these factors in isolation will necessarily mean that treatment is required and depend a lot too on the speed of change so it really is on a case by case basis and very individualistic.

I appreciate that this isn't necessarily the information that you were looking for and I'm really sorry that I'm not able to provide you with that at this stage. However we do have a lot more general information about CLL on the site which might be of interest. Here's a link to the CLL landing page: https://bloodwise.org.uk/chronic-lymphocytic-leukaemia-cll/understanding...

We also have a number of patients in our patient community who have written blogs about life with CLL that are well worth reading and getting in touch with: https://bloodwise.org.uk/patient-voices?filter=chronic+lymphocytic+leuka...

Last and by no means least I thoroughly recommend that you get in touch with our colleagues at the CLL Support assocation. They've got lots of incredibly useful information and are run by CLL patients for CLL patients. Here's a link to their website: http://www.cllsupport.org.uk/

Do let us know how you get on with your appointment with your consultant and remember that we're always here if you ever need any additional support or information. Our support line number is 0808 2080 888. We're also available at support@bloodwise.org.uk

04.05.2016

Hi, I went to see my consultant and my blood counts are stable, though he is worried about the night sweats and repeated infections.  For now he has given me low dose Antibiotics to reduce the infections by boosting my immune system.  He will see me again in 3 months time and review my situation.  He did say that he might order a scan if things don't improve to see if internal lymphe nodea are causing problems.  Currently my lymphe nodes are swell in my neck and uder arms, but he doesn't think they are excessive at present.