April 19, 2016 at 1:03 pm #91816lainySpectator
Dear Alejandro, I am sorry to read what has happened but know that you conquered it once and you will conquer it again! This CC seems to have a mind of it’s own, right? Many of our members have been through repeat performances and they turned out good. Try to keep your attitude as good as you are now and it sounds like you have very good hands helping you. Keep hanging in and hanging on! Wishing you the very best and please do keep us informed of your progress.April 19, 2016 at 11:39 am #91815
Well … So I finally saw Doctor Abul-Alfa. On Monday the 11th they drew some blood and then some more for the impact testing and my genes.
My alfafetoprotein came back at 795 !
It was the first time they tested me for CA 19-9 and it came back as 17 – They also tested me for CEA and it came back as 2.5.
On Wednesday they did a double contrast CAT Scan and this last monday I saw Doctor Abu Alfa again and he told me ( in the nicest way ) that I have three new lesions on the right hand side of my liver, no bigger than 1 cm each.
So it’s official ! ITS BAck !
They are going to treat me with FOLFOX. I had the option of doing it here in NYC or back home in Caracas, where the situation with medicine is dire. I prefer to have it done in Caracas as the treatment is more personalized ( my uncle is my oncologist and so far he has been spot on ! confirmed by the MSK ) So now I have to try to find here in NY Infusion pumps and Leucovorin for my treatment, those are the only two things missing in Venezuela for my treatment.
If anyone knows how to get them shot me a line !
Love you all !March 9, 2016 at 1:57 am #91814
They thing is too …. That I feel great !March 9, 2016 at 1:56 am #91813debnorcalModerator
First, congratulations on your successful treatments last year. That is such a huge positive.
I do not have much knowledge or experience with the afp indicator, but I wanted to let you know you will be in expert hands with Dr. Abou-Alfa of MSK. You did the right thing by quickly getting an appointment with him. I’m sure he will be able to figure it out. To me, it sounds encouraging that all other indicators are normal for you. (But I am not a doctor).
Please keep us posted on Dr. Abou-Alfa’s findings. Hopefully, something innocuous caused a temporary rise in afp level.
DebbieMarch 9, 2016 at 12:59 am #12268
An update on my story:
After being diagnosed on May 2015 with primary intrahepatic cc I started with Folfrinox, scans were clear after 7 cycles, afp went down to normal and I was scheduled for a laparotomy to remove the tumors ( I had seven in my liver )
Had 45% of my liver removed plus two radiations directly on my liver. All lesions were removed and most of the tumors were already dead.
Two months after resection started again on Gemzar and cisplatin. Afp levels were normal, had another ct pet, magnetic resonance, eco, and tomography with contrast that showed no disease present ! Hurray !
Now one month after all was clear my alpha fetoprotein levels started rising again. Had a tomography with contrast and an eco that showed no disease ! No tumors ! Only my afp is abnormal ! My doctor doesn’t know why is this. So now I’m being referred to the MSK with an especialist called Ghanna Abou-Alfa.
Anyone here have ideas, recommendations or experience that wanna share ?
Im a 38 male wanting to live !
Greetings from Venezuela !
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