› Forums › General Melanoma Community › Recurrence after Stage 1 and LDH levels
- This topic has 6 replies, 4 voices, and was last updated 6 years ago by
calm227.
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- March 28, 2018 at 4:20 pm
Hi everyone,
I'm new to this community but not very new to melanoma. I had a Stage 1 melanoma in my left calf that was removed via wide excision surgery in early 2010; nothing was done to my lymph nodes. I have had regular derm. checkups (twice yearly, then yearly) since, and nothing has shown up.
After having acute gallstone pancreatitis in 2014, my alkaline phosphatase was not quite normal over time, so eventually, in 2017, my primary care physician decided to do bloodwork beyond the stardard "metabolic panel" for my liver: GGT and LDH. GGT was normal (which ruled out a liver problem), but LDH was just above the range.
I thought the high LDH was odd, so I asked to recheck it at my annual visit, and it had increased.
Altogether, I have had it checked 4 times (plus the one time it was checked in 2010 in conjunction with the melanoma surgery when it was normal). The normal range is 116-250, and my scores are:
5-11-17: 251
10-19-17: 275
1-31-18: 326
3-27-18: 300
My primary care physician sent me to an endocrinologist to rule out hyper parathyroidism, and in the process, we figured out that the high alk phos was likely due to osteopenia and low vitamin D.
But I was left with these high LDH scores. After the 3rd LDH test, having read about the connection between LDH and melanoma, I asked my primary care physician if she would refer me to an oncologist. Instead, an oncology team reviewed my case and recommended I get a PET/CT Scan, which my insurance approved and I'll be getting on April 3.
Obviously, they are taking this seriously. My questions are:
1. Is there anyone who gets these somewhat high LDH readings, and what have they indicated?
2. Is there anyone who had stage 1, been told all is fine, and then had it reemerge or spread internally years later?
I'm not even sure what else to ask….. I figure that since the oncology team requested it and insurance approved it, it must be serious…. I have just been trying to stay calm about it! Thank you.
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- March 28, 2018 at 6:37 pm
LDH is non-specific for melanoma and your numbers aren't all that high in comparison to some melanoma peeps who have HIGH LDH. There are those who are stage IV who have normal LDH and those with higher LDH without melanoma. You may not get an answer. The PET scan will rule out melanoma – they are just covering themselves but I doubt anyone truly suspects you are stage IV. And yes, there are stage 1 individuals who have progressed later. Stage 1 is not 100% survival. Some progress, most do not. You're getting it checked out but I really wouldn't let your mind go there because it still isn't the most likely.
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- March 29, 2018 at 12:40 am
Thank you so much for replying! Right, this is how I am looking at it too – the PET scan may show nothing. It helps me a lot just to be able to share the situation and have some feedback. It calms my nerves to share, and I've only told a few friends about this (who have no experience with melanoma, LDH, and PET scans). Thank you!
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- March 28, 2018 at 8:30 pm
Hey there,
Just want to give you our numbers for when my mom had her reoccurnace. She was stage 1 when she had a mole removed on her arm. They took some lymph nodes from the same side but that was the extent of that. 7 years later she had a LOT of symptoms for almost a year and just continually got worse until she spent a month extremely sick and that made her go in. She is stage 4 and her LDH was at 4,150.
Her primary location is her liver and as she is being treated her LDH has turned back to normal. Not trying to downplay your concern at all, so please don't take it that way. I am just telling your our story of reoccurance. If you are seeing a reoccurance I wouldn't assoicate it to stage 4 until you get your PET scan on the 3rd.
Seems like your numbers are slightly elevated but nothing drastic and could be a number of things. I think anytime a patient has a concern or wants to see an oncologist when they had a history of cancer they will want to do a scan of some sort, as a pre-req of some sort because they can't tell you one way or another with out it. Just remember that this is pretty standard and try not to stress. You got this. 🙂
Thanks,
Aubrey
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- March 29, 2018 at 12:52 am
Hi Aubrey,
Thank you so, so much for taking time to respond to your post. I am really sorry to hear about your mom, but it sounds like the treatment must be working pretty well.
That is why I thought my LDH levels were weird — I've only read about people having normal values or people who are stage 4 who have super high levels (that is really, really high!). I have never heard of having values that were 10-20% above normal.
But hearing your mom's story helps me know that it's reasonable to be concerned enough to take the test. When I had the stage 1 melanoma removed, I thought I just needed to be paying attention to anymore suspicious moles — I didn't know that it's possible that it could show up internally instead.
Anyway, I'm glad I'm here on this board, as it helps me a lot to be able to share and get the feedback. As you said, this is all pretty standard, and I agree! I actually am so glad to be taking this test, rather than sitting around and wondering about it!!
Wishing all the best to you and your mother,
Donna
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- March 30, 2018 at 5:54 am
Hi Donna, I wouldn’t worry until you have something to worry about, if at all. Those numbers don’t look very high, and the fact it dropped on your last test seems promising. I have ongoing discussions with my mother’s Oncologist over her LDH number. He insists I put too much weight on it. He says that if it’s somewhat consistent only then it can be used as a marker when there are big changes. Also, I understand the LDH is testing for damaged cells (I could be off), and lots of things can trigger a rise. For instance, my mom fell through a chair (the sun had broken the seating). She was sore and bruised, and her LDH number went up 30 or so on the next test. Best Wishes for a nice, clean scan!
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- April 1, 2018 at 4:35 pm
Hi Cindy,
Thank you so much for replying to my post! Just reading these response and reading other posts in the forum are helping me a lot. It is good to read what you and others have said about LDH levels. Still, I'm glad that the oncology team is taking it seriously enough to order the PET/CT scan and that my insurance authorized it — especially reading on this board the troubles people sometimes have with getting PET scans approved!
So, I am focusing on the positive in that I am getting the test. I am worrying just enough so that I will be somewhat prepared if it is bad news. Also — worrying enough to join this discussion board for support, which is a good thing. But since I really want to know, I am focused on that as a positive!
I hope that your mother is doing OK. Thank you again for your positive message!
Donna
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