Chromogranin A?

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Chromogranin A?

by Kelly4 on Wed Jul 15, 2009 12:00 AM

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Hello.  Can anyone tell me what a Chromogranin A level of 1,000 means?  I know a normal level is below 39 but what does it mean if mine is 1,000?  I think it means that there's another tumor in my body but I don't know for sure, and I can't see my doctor until next week.  Also, does the level relate to the size of the tumor, for instance, if mine is 1,000 does that mean that there's a large tumor?  Thanks.

RE: Chromogranin A?

by Janet7 on Fri Jul 17, 2009 12:00 AM

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Elevated Chromogranin A is a
significant marker and sometimes precedes  radiographic evidence
of disease. Mine became elevated in 2008: I had concern about
recurrence of disease (Pancreatic Neuroendocrine) however standard
scans showed no conclusive evidence of recurrence.I was advised not
to worry. I did not choose to ignore elevated Chrom A. I decided to
have a consultation with Martyn Caplin at the Royal Free in Hamstead
London. I asked if more sensitive scans existed, he suggested Gallium
68 DOTA which was available at UCHL. He said people who had thought
they were disease free sometimes lit up like Christmas trees! I
believe in facing cancer down, so I wanted to know: I do appreciate
not everyone will feel the same. The Gallium 68 revealed small bone
mets and two mets in my thyroid. As a result these findings I have
had surgery, two other therapies and next week will start Lu 177 DOTA
therapy. In my experience it pays to be proactive, challenge and
speak to different people. I have survived 6 and half years so far.
Personally I do not believe in a wait and see attitude .

Good luck 

Janet

 

 


 

RE: Chromogranin A?

by John_w_13 on Fri Jul 17, 2009 12:00 AM

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I have been treated for neuroendocrine cancer of the islet cells for ten years. An elevated chromogranin A in my case indicates need for a change in treatment protocol. With each change, the chromogranin A decreased significantly. It is a marker for tumor activity as I understand.

RE: Chromogranin A?

by Wesley1 on Fri Jul 17, 2009 12:00 AM

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Kelly4,

 Hi, My Cga has been ~ 450 for a while.  The last time  it was checked in February it was 450.    I just completed 4 lu 177 tx and it is now 1000.  However, my tumors have shrunk ~ 30 - 40%.  This is 6 wks from my last treatment.  I will have this done again in ~5 wks.  I asked my Oncologist @ Moffitt Ca Center and he said that once it gets high it really is not a good predictor.  I also have read about FDOPA scans being more accurate at finding neuroendocrine mets than ct and In - 111 and bonescans.

 Wes

RE: Chromogranin A?

by Janet7 on Sun Jul 19, 2009 12:00 AM

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Hi Wes


It is interesting that Chrom A became more elevated despite
shrinkage. Perhaps in some cases it is more an indicator of activity
rather than volume. I have been told that tumours (pancreatic neuroendocrine) within the
same person may behave differently.


Where did you have your Lu 177 treatment? I am starting mine this
week in London at UCLH, as I have had most of my large tumours
surgically removed the remaining ones are quite small the largest
being 2cm by 3cm in L4 spine. I am also have other treatments
concurrently.


I will post results.


Good luck with your test results.


 


 

Janet

 

 

 

 

RE: Chromogranin A?

by Kelly4 on Tue Jul 21, 2009 12:00 AM

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Thanks everyone for replying to my post.  I learn so much more from others with this disease than I do from the doctors.  I also don't believe in the wait and see approach.  My chromogranin A went from 32 in May to 1080 in June.  I don't know why it would rise so quickly, especially when nothing shows up on the scans.  I can't get my oncologist to return my phone calls so I'm in the process of finding a new one, and I'll talk to him/her about these other tests that you've mentioned.  Thanks again for the information.  It's very helpful.

RE: Chromogranin A?

by Live4him on Mon Sep 07, 2009 12:00 AM

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Honestly if you are not learning this info from your doc - I am concerned.  I have learned much from researching on my own, but I have to say the majority I have learned from our doctors.  I encourage you to see a carcinoid specialist if you are not already.  If you have questions please feel free to ask.. Wishing you the best....

RE: Chromogranin A?

by msalexios on Tue Nov 10, 2009 10:14 PM

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Hi Kelly, I was curious if you received answers and if you are okay.  Why did you originally have the Chrom test?

Shari

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