My dad suffered with Diffuse Large B Cell Lymphoma and was lucky enough to achieve complete remission post R-CHOP and 2 rounds of Methotrexate.
28 months post CR he’s having routine blood tests every 6 months. This week all his bloods were looking positive e.g. Lymphocytes were finally back to normal etc which is fantastic. The only result which was a bit off was his LDH level. It was 496 and had risen from 466 over three months. His consultant said this was slightly above the UNL (upper normal limit) of 480 but wasn’t a worry at this stage. She said because it’s risen slowly over the last few months she’ll pop a blood test in for 3 months time but reiterated not to worry…
…of course this has been quite triggering for me and I can’t help but get myself in to a panic. I wondered if anyone knew more about LDH or has had a similar situation?
Hi @Sunny_days I am glad that you have found us, firstly I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK and @LauranBloodCancerUK to see if they can help you.
However listen to what your dad’s consultant has said that it ‘wasn’t a worry at this stage.’ and she is obviously on top of the situation by popping in another blood test in 3 mths time.
Of course you are naturally going to worry, you are obviously very close to and love your dad. It is so hard being a caring person because you are on this emotional roller coaster too.
If you would like to speak to someone the Blood Cancer UK support line is there for you and you are now part of our forum
The main thing is to both take care of yourselves and I look forward to hearing more about you
I completely understand why it would trigger your worry and anxiety. As @Erica said, it sounds like your dads team are on top of things and it’s good that they are keeping checks. How is your dad feeling about it all? Please keep posting. We all understand how you are feeling x
Hi Erica, thank you for your kind response. It has helped even just writing things down. I don’t like to discuss too much with my family as they’re not too worried at this stage so I don’t want to put my anxiety on them. My dad is very pragmatic, he looks at all the other bloods trending in a good direction, he feels / looks very well and just wants to live life. That being said I did ask and of course it was a trigger for him. Thank you for looping in Gemma and Lauren
Hi Nichola, thank you for your response, means a lot. Dad would of course have preferred to hear all was ‘normal’ and it was a bit of a trigger but he’s very pragmatic. He’s more focused on the other positive bloods such as haemoglobin, lymphocytes, wbc etc etc. I like to know the science but it’s hard as I read some studies and articles which make m not worry and then others where I do. I’m trying to keep focused on the fact it’s only gone up by 30 in 3 months whereas when he was admitted back in 2019 it was at about 777 as opposed to 496 now.
Hi @Sunny_days,
A very warm welcome to our forum! I am very pleased you have found us. Firstly it is great news to hear that your dear dad is in remission!
This must be such a relief for all, however unfortunately the worry certainly doesn’t directly stop all the same. Often blood tests and routine follow ups can be anxiety provoking and understandably often lead us again down the worry path.
We do know that LDH is a normal substance in the blood but it is at higher than normal levels in some types of lymphoma. As your dad is in remission, it is greatly reassuring that your his consultant team are not concerned but proactively will be monitoring his levels moving forwards. Often our blood values can rise & fall and that is why monitoring & comparison is vitally important. It is also reassuring that your dad remains well.
As you have brilliantly highlighted, it is often the family members who do the majority of worrying in these instances and i am so pleased you reached out to discuss this. In talking about your fears and doubts can certainly help.
It is also just lovely that your dad has you on the case and making sure that he is receiving the right and best care.
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