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LDH Levels

LDH Levels

Posted By
Carlsbad317
4/18/2019 2:27pm
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Replies: 7

As a novice cancer patient and absorbing as much as I can with each new appointment, lab, and side effect can anyone help me or point me to a website about LDH levels. I keep reading that is how the cancer is tracked and my last lab said 271- which is up about 100 from a month ago.

 

Thank you.

Hanlon

mrsaxde - (4/18/2019 - 2:47pm)

Here's the best one I've found that isn't written mainly for medical professionals:

https://www.verywellhealth.com/guide-to-the-ldh-test-for-melanoma-3010749

Don't panic over your LDH level. I've heard people say theirs was over 1,000 and they were doing fine. It's just one of many markers your doctor can use to evaluate your condition.

-Bill

Carlsbad317 - (4/18/2019 - 8:58pm)

Thank you for sharing and for the disclaimer  - it is so easy to go panic mode.

Hanlon

Wicked Witch - (4/18/2019 - 7:52pm)

I am VERY curious about LDH levels myself, as I am wondering if the numbers are a good barometer of disease activity. I have read many accounts where people say “My LDH levels were all over the place and told us nothing” or “My LDH levels are super high and I am NED” or conversely “My LDH levels are low and I’m stage 4”.

This is my timeline:

11/01 - LDH 169
11/06 - Surgery to remove large, ulcerated 7mm primary on back of scalp
11/30 - LDH 159
            Pet scan shows activity only in neck lymph nodes
12/19 – Surgery to remove right neck lymph nodes (13 removed, 5 positive)
12/26 – Surgery to remove left neck lymph nodes (38 removed, 0 positive)
01/17 - LDH 220
            1st Opdivo treatment
02/07 - LDH 377
02/14 - LDH 419
            2nd Opdivo treatment
02/19 - LDH 430
            Trip to ER for severe back pain and subsequent scans show progression to brain (18 mets), every single bone in spine (2 compression fractures due to lesions), ribs, lungs, neck, innumerable in spleen and liver, pelvis, abdominal wall
03/03 - Braf/Mek started
03/06/19 and 03/08/19 – Cyberknife for brain mets and radiation to spine in multiple spots
03/13 - LDH 203
03/27 - LDH 188
04/10 - LDH 137
             Scans show majority of spots significantly reduced, some have completely disappeared, and the bone mets are “stable”

Carlsbad317 - (4/18/2019 - 8:59pm)

Thank you for sharing your info and your curiousity.  

Hanlon

AMcReader - (4/18/2019 - 10:26pm)

Hi Hanlon, It’s really easy to get swept up in what your LDH levels are, especially in the beginning. I did it at every appointment, even when all we were seeing was an increase of 10! But, with a little time and some occasionally high numbers, it has finally sunk in that your LDH can increase for a lot of reasons — a strenuous workout, a cold, inflammation in the body (which can often even be caused by immunotherapy), etc. My LDH recently skyrocketed to the 500s after almost always being below 200 and I kind of freaked out but it was result of liver inflammation from immunotherapy and as soon as steroids helped to get my liver inflammation down, down came my LDH. 

All that is to say, LDH is linked to so much more than just cancer, one reading is just one reading and, if it helps, my doctor gave me a rule that we don’t even think twice about and LDH below 300 and you definitely are! 

I hope that helps.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

Carlsbad317 - (4/19/2019 - 9:19am)

Thank you Amanda.  It’s amazing the things that make you panic and the things that make you want to celebrate with this new way of going about daily tasks. 

Thank you again for sharing your insight and shared anxiety in the beginning. 

 

Hanlon

sister of patient - (4/19/2019 - 3:04pm)

Hi Hanlon - Just to 2nd the guideline Amanda's onc suggested, my sister's doc was pleased when her LDH dropped below 300 (I believe it was 265, can't remember anymore), stating specifically that it was well within normal parameters. As for a bit of a timeline, that was down from nearing 1200 when her stage 4 spread was diagnosed a year earlier, about 7 or 8 mos. after beginning immuno and about 4 or 5 mos. before reaching NED (I believe she might've still even had 1 or 2 liver mets at the time). And, honestly, that was the last time it was ever brought up, by us or the onc ... so, out of curiosity, I might ask my sister to inquire after her next labs but we are absolutely not concerned!! :) Hope that helps. Best wishes to you!! 

Barb