Does the haematologist really know what he's talking about?!

[happyclappy]

So? Does he?

CLL ten years, W&W. Ivig every 4 weeks. Last November, kidney biopsy. Cryoglobulinemia!

So the cryo kicks up symptoms not necessarily related to CLL. Blood test numbers all roughly within perimeters, except immunoglobulin, 1.49!

The haem just shrugs his shoulders when I ask cryo questions. And he's not the only one. I've been told, if the CLL is the driver, don't worry about the cryos! Ok, so it's the B cells that are producing the cryoglobulins, proteins. These react badly to cold, but it's way more complex than that.

Haem decides Acalabrutinib. Been on it ten days. He's treating my symptoms not the numbers. So, most of my symptoms are from the cryos it would be useful to monitor the cryos, for which there is a specific, controlled test. How will I know how the treatment is going if he doesn't know what the main protagonists are doing?

Befuddled!

[Shedman]

Treatment of symptoms not numbers.. where CLL harms quality of life to suitable extent, or there is risk of a worsening due to involvement with other organs, this can be good reason to treat..

I just looked at your last 4 posts and you have not actually given a lymphocyte count.. What was your lymphocyte count pre-treatment?

Dare I ask you approximate age too?

Kidney involvement can be a serious concern — my situation was of para-protein (duff immunoglobulins) clogging my kidney function.. loss of blood proteins.. thicker blood.. risk/realisation of DVT+PE.. life-threatening situations.

If cryoglobulins see your life limited with risk of worse, that could very easily be reason to treat.. I am not so up to speed on cryoglobulin implications.

[SofiaDeo]

Treating the patient (symptoms), not the numbers, is the hallmark of a good physician. It refers to even if labs appear or are normal, there is a problem affecting the patient. I would guess he shrugs his shoulders at cryo questions because while we know blood cell abnormalities are associated with it, we don't know the mechanism.

my.clevelandclinic.org/heal...

Are you saying he refuses to do levels At All, or just not as frequently as you would like?

[Hidden]

Why did you have a kidney biopsy? Seems random.

[happyclappy]

Hi guys, thanks for your comments. I think my whinge may have been miscommunicated slightly.I'm pleased to be getting treatment, absolutely! It's just this cryoglobulinemia thing.

Been on W & W for 11 years, blood test every 3 or 4 months. If there's no night sweats, weight loss, increased infections etc, CLL stuff, the status quo prevails.

However, last summer I was getting rather a lot of blood in my urine. GP, then urology, then renal and it was this guy who first mentioned cryos and wanted a biopsy. The positive test was almost like a eureka moment, some things started to make sense. The swollen ankles, the peripheral neuropathy, the rashes from standing too long, the feeling of total sluggishness if the temperature drops a little.

Unfortunately, no one seems to know much about it, apart from the renal guy that I don't speak to again until June.

So yes, top doctor, treating my symptoms but the symptoms he's treating are for a rare disease he's not familiar with. So bloods will change though I expect not dramatically and without a check on the cryos there's a major part of the puzzle going unmonitored. And another huge frustration is, I went to the GP at the start of August with this issue and it's taken the best part of 8 months to get the treatment. I picked up the Acalabrutinib on the last day of shielding. So I've just had two weeks off sick while I get a hang of the side effects, and tomorrow go back to work! Yay!

I'm approximately 58 years, 2 months, 1 week and 4 days old, roughly! Lymphocyte count: Jan 51.81, Feb 44.13, Mar 62.00.

[Belkin123 in reply to happyclappy]

Best wishes Peter. I hope your treatment with acalabrutinib is going well. In regards to cryo, it might be slow.please update.B