Hello I was diagnosed with CLL with TP 53 mutation I started treatment in March with ibrutinib which is going well numbers coming down slowly very few side effects until the last few weeks last blood test results showed high LDH 613 which I don’t know what this could mean but my right leg is swollen above my knee 1&1/2 inches bigger then left leg I wondered if this could be connected have spoken to cns who said yes LDH high I will get doctor to ring you that was Thursday no phone call I know they are busy so just home worried and looking at mr google any reply’s would be much appreciated
Hi
I replied to your earlier post and can see that you have joined the CLL,SLL, HCL group.
I think you probably meant to post this there. If you click on the link above you could copy and paste your post from here into a new post in the CLL,SLL, HCL group to save you typing it out again.
Any problems just give me a shout
x
Hi Ellajane
Here's a note about LDH (Lactate DeHydrogenase)
Lactate dehydrogenase is an enzyme that the body uses during the process of turning sugar into energy for your cells to use. LDH is found in many of the body's tissues and organs, including the muscles, liver, heart, pancreas, kidneys, brain and blood cells. The LDH test is mainly used to help identify the location and severity of tissue damage in the body. It's also sometimes used to monitor how far certain conditions have progressed.
I was diagnosed in 2010 with the 11q- deletion. In 2013, when it came to time for treatment I opted for an Ibrutinib v Chlorambucil trial at Bournemouth Hospital. Fortunately I was assigned to the Ibrutinib.
At the time my LDH, (looking back at my blood counts), was 727 which was scary!! After two months on Ibrutinib it was down to 313 near to the norm at Bournemouth Lab (< 250) I don't know whether or not it would affect your leg, do you have a CLL specialist??
Ask your haem/oncologist about a B2M test which is the best indicator of disease progression. B2M is a type of tumor marker. Tumor markers are substances made by cancer cells or by normal cells in response to cancer in the body, .B2M is found on the surface of many cells and is released into the body. Healthy people have small amounts of B2M in their blood, mine was 7.9 when I started the trial and again, after 9 months of Ibrutinib , it was down to 3.3 just above the norm at the Bournemouth lab (1.4-2.4).
I hope the Ibrutinib will eventually have the same reduction of LDH in your case.
Best wishes
Mike
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