arapro
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I haven’t been completely honest
I lost my hair when I was 21 ! I was letting it grow again but I look like a crazy monk !!Thanks DebNorCal ! and Lainy … yes I a have to find the spanish version …. that would be fun !
marions, the team exists ! I had this treatment last year, plus a laparatomy where they removed 45% of my liver plus my gallbladder. The situation now is that access to US currency to import these materials and medicines is very hard. So I have to be careful !
But the team here at NY MSK is already talking to my team in Venezuela to get me everything I need to start Chemo on this coming monday !
On the other hand I am not too keen on starting and feeling the side effects of the chemo …. makes me want to puke and I will loose my hair again ! ( it was growing beautifully ) but hey what can you do right ?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 !Hello,
Low platelet count is normal when you are getting chemo. Don’t worry … Let your body heal. Get plenty of rest, drink heaps of fluids. When I was on my chemo ( all 21 cycles ) sometimes I would skip a week or two cause of low platelets. Enjoy the break ! I found that having soup made from chicken legs helped to raise them, although it tasted disgusting, try to disguise the flavor with potato soup or whatever soup you like. I think what really helped me was rest. Apparently sleeping it’s the best way too raise them !
Chin up
Good luck too ! I was also on gem/cis after resection and so far ( 2 months ) no tumors. Although my afp is high and the docs don’t know why
Hi Christine,
I too had intrahepatic primary cholangiocarcinoma with high levels of afp.
When I was diagnosed in May last year my account levels were 8000. I had 8 lesions on my liver. I started on Folfrinox for 7 cycles, after that my afp went down to 2. I had a ct pet scan that came out normal and all the lesions either shrank or disappear. They performed a laparotomy for a partial liver resection and removed all the tumors in necrosis that were in my liver plus my gallbladder. After that I did 12 more cycles of Gemzar and cisplatin. In January all my blood test and ct pet, magnetic 3D resonance came out all normal. A month later in February my Afp started to rise again, did new exams ( images ) and no lesions present. Now the doctors are analyzing why my ago is rising even tho I have no lesions !
I hope your treatment works for you. Keep positive and keep on going
Regards,
Alex
Congrats on the clear scan !
I’m also on a similar situation … All my scans are clear but my Alfa fetoprotein is rising !
Waiting a new approach from a new especialist !
Kind regards
One more thing ….
After the surgery and after each chemo session keep it the are clean. It is important not to get any infections.
Cheers
Hi Scott,
A port, your new best friend ! Is it one your chest .
I have one and I love it. No restrictions whatsoever. I have hiked, run, kite surfed, surfed, golfed and all kinds of things.
It protrudes like a coin on your chest and that’s it. Just be careful not to hit as you might feel pain ( same as if you hit any other part of your body )
A catheter port is a blessing !Enjoy
Alejandro
G’day !
So here I am ! Seven weeks after a laparotomy that took 45% of my liver. With no macroscopic disease present I started on gemzar and cisplatin last Monday. In for another session this coming Monday. Side effects have not been that bad, slept for a whole day on Wednesday and have been feeling pretty hungry. My skins is still numb from the laparotomy but today I went for a hike and actually did some excercise. I truly believe doing activities outdoor help. I’m going to get 5 more rounds of chemo before having a new ct pet. The it will be the question mark ! Keep living my life and have “recurrence” in the back of my head. I intend to go traveling as soon as i am able too ! And got a few projects to keep my mind busy.
