Diagnosis in 40s

Sorry to hear of your rather early diagnosis. Certainly most of us were diagnosed when in their 60 and above.

I have been in watch and wait for over 12 years and my situation is not uncommon.

In order to assess the likelihood of any progression you would need to get the following tests done.

Mutated versus Unmutated which is VERY important.

FISH test to determine which genes are affected. The order of potential bad to worst being; 13 q del, 11 q del, 12 trisomy, 17 p deleted.

Sadly in the UK these tests are not done routinely, which leaves the patient always wondering what next. The cost of the testing work being the excuse, though the costs are frankly not that expensive, and if it reduces the worry factor then the costs could be considered cheap.!

Lastly there is the question of any life expectancy statistics that you might read.

Frankly ANYTHING you read on this subject is now totally out of date due to the many new drugs that are now available. Only recently the results of a drug trial utilizing Ibrutinib and Venetoclax were released, and for the very first time the scientists murmured the words, ‘possible cure’.

We live in fortunate times with two new drugs now released and at least 5 or 6 undergoing trials with patients.

Lots of useful information on the web. Try Googling the CLLSA and healthUnlocked.

Dick

This is really interesting Dick, I certainly had not found reference to the new drugs during any of my research - and even more certainly never heard even the muttering of the word "cure" though of course I understand that we should not get carried away... To be perfectly honest, I can only assume that the tests you refer to have not been done, but I will ask my GP and raise the question of whether I can have them, as one thing I have managed to glean from my research is that there are certain elements of the condition that result in a far less favourable prognosis, and I had assumed that all you could do was wait and see in order to find out whether you are affected.  It is interesting to read that many people still have no symptoms, whereas I do, which is why the blood tests were carried out in the first place.  So far, "only" near constant headaches (though not severe) and tiredness, and it would be interesting to understand what others have experienced over the years since their diagnosis.  I have a GP appointment next week, and will certainly raise these tests with him - watch this space...

I was diagnosed when I was at 53. I’m now receiving Immuonglobulin infusion once a month, as I was having recurring infections. 

Same as you, I was told that this normally happens to older people. I try to stay positive. 

I was aged 57 when I was told I had cll stage A.I. have now been told I have copd as well.Sorry to hear you are in your 40s

Hi Everoptimistic

I was diagnosed just over a year ago at just 47.  "CLL/SLL at least stage 3A".  I went to GP as glands came up in head, neck, under arms and groin.  A few months before diagnosis I felt the first swollen glands in my head but had blamed that on getting infection from dentist (I hadn't got infection I was just blaming it on that!).  I did go to the GP at this point and of course as soon as you mention youve been to the dentist they just said, yes it must be that!  Then literally week by week more glands came up in neck, then collar bone, armpits and groin.  So I went to see my actual GP and she's brilliant - did a full body check and referred me straight away to breast specialist.  I've got private healthcare so I got appointment the following week with him.  He thought good possibility it was breast cancer (because of armpits swollen).  Had needle biopsy in neck first.  Then PET scan.  Then the wanted to remove larger piece from under arm, but I said hang on, at least try needle biopsy frist to see if that gives enough tissue to read - so they did, and luckily it was enough tissue to get tested, and that confirmed CLL/SLL.  Then I was referred to CLL haematologist who said 3 monthly checkups, watch and wait.  (Which I now do at NHS hospital.)  But he did take bloods which were sent to Royal Marsden for indepth testing they do.

I did ask my GP for a print out of all blood test result that Id ever had done, and it showed that I'd prob had it since 2009!  It was at this time that I was feeling very tired etc.  I also started early menopause in 2014 so of course every time I felt tired etc I'd been blaming it all on hormones!!  I also suffered anxiety - purely because I was so tired, and people would ask me to go out in the evenings and I'd dread it, because I knew how awful I would feel, but I didn't really understand why!!  Funnily enough, anxiety has been fine since diagnosis - because it all makes sense now!

My bloods are now much improved. My neutrophils for the first time are higher than my lymphocytes! I'm telling myself its the green tea and super diet thats doing the trick!    ;-))

Go un Healthunlocked, CLLSA and on FB page CLL support group UK.

Hi Everoptimistic(love the name btw!) 

I was diagnosed in 2008 at age 37. I had blood tests completed as I was feeling very tired.My mother had CLL also, she was 55 when diagnosed, but think she had it a long time before that, but just ignored symptoms. Unfortunately she was diagnosed with other cancers and passed away at 61. 

My uncle ( her brother) has it also, he is now late 70’s and doing well! 

My own story is that I was on watch and wait .. all going well til I had surgery in 2016 for an unrelated issue and then my counts began to climb.My lymph nodes and spleen enlarged, so I required FCRtreatment last year. I am coming to gradually after it, and hoping for a long remission!

Hi Teresa - your story definitely backs up the theory that this is / can be hereditary, and 37 is clearly very young based on all the information that I have found.  I guess we must all hope for your Uncles good fortune as far as the CLL is concerned?  I share your hope for a long remission for you and thanks for replying to my post

Hi PopEine - I know what you mean about the symptoms.  I lost my partner of over 17 years last summer and I had been putting all my symptoms down to that - and indeed, my GP also thought that was all there was to it, the blood tests were only done as a "belt and braces" approach because my most concerning symptom was that my brain just didn't appear to be working, I couldn't / can't focus at all and I was really struggling at work.  The fact that I am on watch and wait, means I have no improvement in symptoms, just knowledge as to what's causing them.  Glad you are going well at the moment and I will need to get onto these other online platforms I think, if I am to get fully informed.  Thanks for replying.

Hi Ken1.  Gosh, COPD as well, I guess that makes tiredness a reall issue for you?  It does seem that 40s in indeed young for diagnosis, though it also seems that some of those diagnosed later, knowing what the symptos are, now feel that they may have had it for longer.  Thanks for replying 

Hi Gwyn.  I am a bit paranoid about infections now, as it makes sense to me to avoid them on the basis that they could speed up the progress of the CLL...  I am lucky in that the nature of my work means I don't come into contact with too many people and although I have a very young niece, I don't come into contact with any other children and my brother knows to keep her away if she is "germy".  Chin up!!