One patient with glioblastoma still alive nine years later
by Kelly4 on Wed Jul 15, 2009 12:00 AM
by Janet7 on Fri Jul 17, 2009 12:00 AM
Elevated Chromogranin A is asignificant marker and sometimes precedes radiographic evidenceof disease. Mine became elevated in 2008: I had concern aboutrecurrence of disease (Pancreatic Neuroendocrine) however standardscans showed no conclusive evidence of recurrence.I was advised notto worry. I did not choose to ignore elevated Chrom A. I decided tohave a consultation with Martyn Caplin at the Royal Free in HamsteadLondon. I asked if more sensitive scans existed, he suggested Gallium68 DOTA which was available at UCHL. He said people who had thoughtthey were disease free sometimes lit up like Christmas trees! Ibelieve in facing cancer down, so I wanted to know: I do appreciatenot everyone will feel the same. The Gallium 68 revealed small bonemets and two mets in my thyroid. As a result these findings I havehad surgery, two other therapies and next week will start Lu 177 DOTAtherapy. In my experience it pays to be proactive, challenge andspeak to different people. I have survived 6 and half years so far.Personally I do not believe in a wait and see attitude .
by John_w_13 on Fri Jul 17, 2009 12:00 AM
by Wesley1 on Fri Jul 17, 2009 12:00 AM
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.
by Janet7 on Sun Jul 19, 2009 12:00 AM
It is interesting that Chrom A became more elevated despiteshrinkage. Perhaps in some cases it is more an indicator of activityrather than volume. I have been told that tumours (pancreatic neuroendocrine) within thesame person may behave differently.
Where did you have your Lu 177 treatment? I am starting mine thisweek in London at UCLH, as I have had most of my large tumourssurgically removed the remaining ones are quite small the largestbeing 2cm by 3cm in L4 spine. I am also have other treatmentsconcurrently.
I will post results.
Good luck with your test results.
by Kelly4 on Tue Jul 21, 2009 12:00 AM
by Live4him on Mon Sep 07, 2009 12:00 AM
by msalexios on Tue Nov 10, 2009 10:14 PM
Hi Kelly, I was curious if you received answers and if you are okay. Why did you originally have the Chrom test?
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