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Hi Mary,
Thank you for your well wishes, I do think they make a difference 😉
I believe keytruda is part of a trial for CC. It was either that or abraxane and gemicitabine. So lets hope for this to work !
Cheers,
Alejandro
Hello again ! So two cycles into the trial and I got booted out 🙁 20% growth. Doctor was sadder than me that it didn’t work. I did not feel any side effects, not even my phosphorus went up, I hope it works for others. I’m going to try Keytruda now. Later !
Hi Mary,
How are you? Hope you are well.
Thank you for your wishes and prayers. They are well received
I am still writing my blog, although I haven’t written anything in the last couple of months. The political situation in Venezuela has deteriorated to a point where I do not feel comfortable writing about me ! But I guess it is time for a new post !
Stay tuned.
Regarding the trial, did the EKG yesterday and they did the blood work, all 10 or so tubes of it ! It is 8am in NY, got an appointment with an oculist at nine.
Then later today I am seeing my endocrinologist, and then at 7pm a CT scan. It is all to set a baseline.
I can tell you all my blood values where fine, only my AFP was at 640 – a Little over double in two months but still low for me ( When I got diagnosed a little over two years it was 9000 ) My CA 19-9 came back at 46 u/ml which is just over the limit of 40. This last was a first ! Hopefully my pancreas is ok. I know I have mets in my perituneum and hopefully my liver continues to be ok.
I guess we will know after th CT Scan this evening. But to tell you the true I do not even care that much. I am hoping for this next pill. And I am preparing to go back to florida tomorrow and then escape hurricane Irma ! I feel great, haven had any chemo in 3 or 4 weeks. I was on Gem/Cis for 3 cycles before the trial started. So I feel great ! I am still doing my programming course I am seeing you all good vibes. Will keep you all posted,
Kind Regards,Alejandro
Hi,
I use canabbis oil. With it I have not used painkillers ( Tylenol nor oxycodone) , nausea pills ( ondasetron ), anxiolytics ( rivotril ) or docusate ( to go to the bathroom ) – I feel great. If you can use it. My doctor also said it was ok.Hello,
I’m 40 years old and also have icc, started in liver, then pancreas and now in the abdomen. Never had any symptoms. Had 5 rounds of chemo and also have the fgr2 mutation. I get treated at memorial Sloan in ny. Recommended !
Awesome story. I’m going to start my 5th tour of chemo tomorrow. The next day I turn 40. It’s been 2 years and 3 months. 3 surgeries. Still strong
Hi, sorry it’s been a while Marion.
Irinotecan was pretty manageable actually. Tomorrow I start with gem/cis again.
Will let you know
I feel great btw. It’s bizarre
Hello Everyone !
I have that mutation as well, the FGFR2. Went for a scan on monday and they found new multiple lesions on my peritoneal cavity. They stopped the Irinotecan. They did filled my pump with FUDR. Now in a couple of weeks they want to go in that trial for ARQ087.
Wish me luck !
Alejandro Reyes
reyesalejandro.comHello !!
Yes, if I need … I can go to UNiveristy of Miami. Luckily that has only happened once. And because a post surgical drain that was turning pink.
I flight to ny every two weeks to get chemo and everything else ! It’s better than flying from venezuela. So at the moment Florida is home !Hello Hello !
Third round of chemo down !
One more to go … Alfa Fetoprotein has gone down to 85 ! which is great !
Still fighting nausea and stomach pains … but nothing too bad …
Next chemo is next week and will have a check up as well. After that I have no idea what they will do to me ! hope the freaking tumors stay away this time !
Sending you guys all my loving !Hello hello !
And so I’m back ! From the second round of chemo Folfox.
At the moment it’s 3:48 am in Caracas, woke up at two and can’t get back to sleep.
I feel pretty tired from the chemo, and have had some troubles with nausea. Other than that my alpha fetoprotein went down to 400 from 850 with one chemo which is good. Now two more rounds of chemo in the next month and another check up.
A friend of mine gave me a bottle of pills called 4life transfer factor plus, has anyone had any experience with it ?Sending best vibes to all here
Alejandro
