Starting treatment

[mfc86]

Hello everyone, I've been on W&W Since Jan 2020.

Two weeks ago at my consultation my consultant said its time for treatment, that week I had a CT scan, blood tests and an echo heart test.

My next step I assumed would be a meeting regarding my treatment, however she called today to say I need a pet scan as my LDH levels are high.

She is quite hard to understand over the phone, she did say that it might be a sign of a high grade cancer.

I appreciate she needs to rule things out but I've never heard of LDH until today.

Has anyone else had a similar route before treatment.

Any help would be much appreciated.

Thanks Merv.

[Panz]

I am sure others with more knowledge will be responding but is one of the numbers I watch even more then the WBC.

Panz🙂🌈👍🙏💕☘️

[mfc86 in reply to Panz]

Thanks for the reply... I've been very matter of fact regarding treatment and Ive been thinking bring it on..

Just phased me a bit 👍

[devonrr]

Every blood test I have for CLL requests LDH. This can monitor progress of a disease, like our CLL or tissue damage from infection etc. No doubt your blood tests include U&E, Kidney and Liver function.

Don’t panic, it is good that the consultant is being thorough.

Hopefully, someone has had the same experience and will give reassurance.

[mfc86 in reply to devonrr]

Thank you.... Much appreciated

[AussieNeil Administrator]

Lactate Dehydrogenase (abbreviated LD or LDH on your blood biochemicals blood test panel) is an independent measure of the growth of your CLL and can indicate Richter's Transformation/Syndrome (RT or RS), the 'high grade cancer' your consultant mentioned. While this is scary, if LDH is raised due to RT (doesn't always happen), then it is likely several times normal. The most common cause of a raised LDH in my experience and from what I've read online, is poor technique in taking your blood sample or in the transport and processing of your blood sample caused by broken blood cells. That's because there's more LDH inside cells than in your blood plasma. When blood cells get broken, they release their LDH into the plasma and you get an artificially raised LDH.

If, during your last blood test, you remember the phlebotomist struggling to get a blood sample, for example moving the needle back and forth in the vein to get an improved flow, or if your arm is more sore than usual or you've got bruising around the needle site, you can probably relax. Likewise if you feel fine. I would even contact your consultant, say that this has happened and ask if a repeated blood test is worthwhile before proceeding with the much, much more expensive PET scan. Your consultant might be hard to understand, but she is being thorough.

Neil

[mfc86]

Cheers Neil.

I had my bloods done last Monday, don't think she was struggling as such but a week later I still have a bruise, so that's a bit reassuring.

Thanks again 👍

[AussieNeil Administrator in reply to mfc86]

If you have a bruise a week later, that's indeed reassuring. Please keep us informed.

[mfc86 in reply to AussieNeil]

I certainly will.

Thanks again Neil 👍

[mfc86]

So... Its not a higher grade, consultants meeting next week and then treatment to begin the week after, I will no more next week but overnight stays for the first month, with target therapy intravenous drip...and then tablets for a year, does this sound familiar with anyone else's treatment... After 3 years on W&W..... I'm ready 💪