Looking for some answers, hope you can help. My Father recently passed away. He had CLL.

[Dancindufas]

Hi folks. I know very little about CLL. My Father was diagnosed a couple of years ago. He attended regular check ups at the hospital, I believe they Checked his bloods however I'm not sure what they were looking for. He was not being treated, he was a watch and wait. His Dr seemed to have no concerns with his condition and at his last appt in October 2015 his return appointments were moved to less frequent. I never really took my Dad's cancer very seriously as the way it was explained to me was that his type of cancer was not aggressive, that it was slow growing. his Dr told him that at 72 he would very likely die of something other than his cancer. HAPPY DAYS we thought. My Dad passed away on the 11th of December last year. He took Ill very quickly. The local Dr wanted him checked out at the hospital as she suspected an infection of some sort. From the time he went to hospital within 24 hrs he was in intensive care as he had developed pneumonia he went down hill so quickly not even the Dr's understood why. He died the next day. The Dr's kept referring to his weakened immune system due to his CLL. I was really shocked to hear this as neither my Mum or Dad ever mentioned a severe weakened immune system. My mum didn't mention it I really don't think she had any idea either. My Dad had 17 grandchildren and anytime one of them was ill they went to Granny and Grandpa's to be looked after! So my questions really are if any of us had the cold should we have stayed away? As part of the blood tests do the Dr's look for immune levels? (can you even check this? ) about a week after my Dad died the hospital got the cultures of his bloods back and they found a yeast infection cryptococos. Subsequently in the last year my dad had not been himself. He was particularly lethargic. He'd get out his Bed then within an hr or so he'd be snoozing on the couch again. We didn't put this down to his cancer as his Dr had seemed to have no concerns. My Dad drank a fair bit so we just put it down to that but I'm wondering now as the dust has settled could this have been his cancer getting worse?

[Newdawn Administrator]

Hi Dancindufas and I'm so sorry to hear of the loss of your father. He was clearly very precious to his large, loving family.

As I understand it, Cryptococcus is a type of fungus that is found in the soil worldwide, usually in association with bird droppings. Was your dad a keen gardener by any chance? The other important thing to mention is that this kind of fungal infection can affect people who are not immunocompromised too. Unfortunately, CLL is cancer of the B cell lymphocytes which are responsible for fighting infection so by definition, CLL is cancer of the immune system. I'm sorry your family were not fully aware of that but it sounds like your dad simply wanted to live his life in his own way and maybe wouldn't have wanted his children and grandchildren to keep their distance.

Each time we go to our consultations during the Watch & Wait period, the specialist checks blood levels and in simple terms increasing lymphocytes, reducing haemoglobin, platelets and neutrophils means our immune system is declining and treatment may be needed. The doctor also looks for symptoms like enlarged nodes, swollen spleen, extreme fatigue, drenching night sweats and frequent infections.

From what you describe and because his doctor had reduced the frequency of your father's consults, he obviously felt that his blood levels were not galloping along and he had a less aggressive presentation. Naturally that's speculation and I have no idea of the staging of your dad's CLL. I've no idea whether his fatigue was CLL related and aggravated by drinking but fatigue is very much a symptom of this condition.

There is no doubt however that your father was immune compromised but it could be that whilst the opportunistic fungal infection affected him more profoundly because of his CLL, it may be that the pneumonia may have struck anyway. Obviously it's impossible to know for sure.

I can understand you searching for answers and I can also understand you feeling aggrieved that you weren't told the full extent of the implications of CLL. But the reality is many people never need treatment especially when they are diagnosed in their later years. So his CLL may have been quite slow and indolent but it still compromised him to some extent I'm afraid so like all of us on here, we have to be so much more careful about infections of any kind. It does appear that this was not known to his family and his condition was very much played down.

I hope that helps explain in some way and best wishes to you and your family.

Newdawn

[Dancindufas in reply to Newdawn]

Thank you so much for taking the time to reply and thank you for being so kind. This helps me. I can't discuss this with my mum as she gets defensive. He is missed so much, he was a big part of our family. I guess I'm questioning if I could have done more and known more about his condition it could have helped him. I just always expected him to be here...

[Newdawn Administrator in reply to Dancindufas]

I don't think you could have done more Dancindufas because he clearly didn't want to be viewed as a sick family member and he continued to provide the support to his family right to the end. I haven't told my family about my CLL because I don't want any special treatment.

The sudden infection was cruel and ended his life swiftly. It obviously took everyone by surprise even the doctors! A friend of mine died from this infection as a result of keeping pigeons.

We struggle with CLL to live our lives fully without resorting to living in a bubble and it could be he would have hated restrictions.

I lost my father when he was relatively young and I understand how much it hurts. Just be there to support each other. None of you could have cured his condition and I bet he wouldn't have appreciated even well meaning nagging!

Supportively,

Newdawn

[fieldmeadow in reply to Dancindufas]

Life is full of "could I have done more" and "if only". Don't beat yourself up about any of this. Your father had regular checks with doctors who would probably have given him information that was appropriate for his stage of cll.

More importantly, your father died knowing he was loved by you and his large family. And for this he was a fortunate man indeed.

Every blessing as you and your family grieve for him.

[Dancindufas in reply to fieldmeadow]

Thank you for taking the time to read my post and for your kind reply.

[Quarry]

Dancidufas

So sorry to hear about your dad, who was obviously well loved.

As always, Newdawn writes a lot of sense. We cannot know what went on, as there is no information on your dad's blood results. CLL is a very individual disease: we all follow different paths. I think of CLL as going up a set of stairs....over time you go up till you get to a level where you are too close to the top (where nasty things can happen) and you are given treatment to push you back down. It sounds like you dad was pretty much near the bottom of the stairs (just above 'yes you have CLL' step).

Given you dad was put onto less frequent visits to the specialist, it is highly probably that his CLL was low level and stable (ie he was at bottom end of stairs): it looks like there was absolutely no indication it needed treatment. CLL is usually a slow-moving cancer, so given he had just been effectively given a 'relatively good report', his CLL was probably very low level even at the end. Fatigue is a symptom in some, but fatigue can also be caused by many other things. Yes CLL does weaken immune systems, but if his was at such a low level did it really play a part...and so quickly? My guess is it is improbable that CLL had a major role in your dad's death, given it was so sudden.

As Newdawn says, you could not have done more. It is great he was so engaged with his grandchildren (many are not....). I am sure they gave him joy and that they will have great memories of him!

Hope this helps

Andy

[Dancindufas in reply to Quarry]

Thank you for this. Everything you guys have told me has put my mind at ease. It just doesn't seem plausible that my Dad would die so quickly in this way. He was a young 74 and he was my Dad... He did have a further serious infection in September last year when he was in Turkey. He developed cellulitis, he was treated with antibiotics in hospital for this. Perhaps this depleted his immune system further although he did have a check up with his CLL consultation when he came home in October, which is when he's check ups were moved further apart. I must stop over thinking! Really, what you guys have told me is reassuring. I wish you all good health.