Update on the anaemia problem

[catmad1]

Hi there all you clld-ers!

For those who have been interested in the possible treatment for anaemia in CLL, an interesting development. It's probably due to the chronic kidney disease taking a forward step! I am now grade 4, which apparently may not be as much fun as grade 3B was. The chronic kidney disease (ckd) can cause anaemia which does not respond to normal treatment. The standard treatment for anaemia in CKD is using Erythropietin to stimulation the bone marrow, and but that also aggrevates any high blood pressure, so it looks as if I am likely to remain anaemic from here on, as I have a really difficult high blood pressure problem. The CLL remains to poodle along quietly at present, so if one don't get you, then the other one will! Ah well, it's a good life but a shortish one. Cheers to all CLL-eders

Catmad1

[Justasheet1]

So what are your options? Transfusions as needed?

No good. Sorry.

[catmad1 in reply to Justasheet1]

Thanks to all the followers of my latest health problem. After a week of vastly increased fluid intake, another blood test showed some improvement with my kidney function, so I am now hovering between grade 3B and 4. The gp has decided at present to continue to monitor, albeit on a more frequent basis, so at least there is some interest shown. I am not a candidate for transplant as I am too old (coming up for 80 on Christmas Day), so if the kidney function deteriorates further it will be dialysis, not something I contemplate with much relish. I think the recent spell of very hot weather did not help things, although I stayed inside in the cool as much as possible.

Strangely enough my father also had CLL and also had Chronic kidney disease, so perhaps it was all in the genes anyway!

Any way, thanks to you all for 'listening'

Catmad1

[Justasheet1 in reply to catmad1]

You sound tough Catmad1. You know they say cats have 9 lives? Maybe that's in the genes too.

Jeff

[Newdawn Administrator]

That's interesting but in a bad way Catmad. I hadn't realised you have CKD which obviously complicates matters and sounds like your hypertensive state has badly impacted on your kidneys.

As Justasheet says, what are the options?

Newdawn

[cllady01 Former Volunteer]

Is there no treatment for your CKD?

[newyork8]

Is your CKD related to CLL? I understand that CLL can infiltrate the kidney. My egfr has declined.

[Quarry]

Well the good news is CLL quiet and probably not causing the anaemia....

So you need to focus on the CKD....as Justasheet1 asks, what are the options? Can you live with the anaemia at current level/does it get worse? Is transplant an option (ie is the CKD related to your kidney....or would it come back if a donor kidney was there)?

[catmad1 in reply to Quarry]

Hi there, The CkD has returned to just within the grade 3B levels, so I am balancing life on a knife edge, (well, no really, but its a balancing act at present). There would be no transplant because I am considered too old ( 80 next Christmas Day) I did have a kidney CT scan, but they decided a couple of years ago, that any damage was microscopic at the time and I was discharged from the renal clinic about 18 months ago, and told to be referred when things got worse! Th latest anaemia level had improved slightly over a week, so I will wait to see what shows up next week at the annual review with Addenbrookes team in the haematology clinic. Wish me luck

CAtmad1

[Quarry in reply to catmad1]

Good luck!! Great respect and wishes for your 9th decade!!!

[MsLockYourPosts Passed Volunteer]

Have you had a kidney biopsy? My urine protein / creatinine ratio was very high and I was becoming increasingly anemic. A BMB showed CLL and a kidney biopsy showed that the CLL presents in the kidneys. My original treatment (2003) was rituxan weekly x4 specifically for the kidneys. In 2015, when my kidney numbers started out of line again, I was treated with Gazyva, aka obinutuzumab - no chlorambucil - with very good results.