Hi everybody! I'm Dave from SW Michigan. I was diagnosed with HCC about 15 months ago. PVVT meant no surgery or transplant. Has a Y90 procedure done last July in Ann Arbor. It killed 75% of the largest tumor but there was 2 new tumors in my lungs on the last MRI so the Dr. put me on Nexavar. Been taking it for over 3 months, not too bad, I'm tolerating it well. I've had heavy-duty chemo before in '93 when I had a bone marrow transplant for leukemia (cml), so this is much easier. Have a CT scheduled next month to check the progress of things.
I'm 63 and HOH and my wife & I stay active going to the gym and working on the house. With the weather warming up we'll be planting some tomatoes and going to the beach: we live about 20 minutes from Lake Michigan.
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reddog88
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I had a 3cm HCC with PVTT diagnosed Jan and had open surgery to remove both here in the U.K. a month ago.
Initially I was to have segment V removed, but after a fresh CT scan at the beginning on March, the PVTT had spread to segment VIII. I’m spite of having cirrhosis caused by haemachromatosis, my liver was compensated and I was well before having the surgery. All things considered I feel OK now.
My check up isn’t for another 3 weeks and it will be interesting to see what the path results are.
The fear with the PVTT is always spread, either intra or extra Hapetic. Good luck to you
The surgeon I saw when I was first diagnosed when I had only one tumor(~5cm) was skeptical of good results with surgery, about 15%. My cancer seems to be rather aggressive. I had a liver ultrasound in Nov '17 and it showed no abnormalities. A blood test the next month had an AFP >500. A CT scan in Mar'18 showed a 4.6cm tumor with possible portal vein involvement. The tumor had grown to over 6cm 2 months later and a new 2cm tumor had developed. I had the y90 procedure in July '18 and started on Nexavar in Jan of this year.
A MRI in Jan showed 2 new masses in the lungs.
My understanding of what the surgeon said was that they were extremely reluctant to operate with PVTT in the picture.
I have never had any symptoms and do the same things I did before the HCC.
Yes, they are very reluctant to operate with PVTT.
My HCC was slow growing as it was originally noted as a 1.3cm tumour during a routine ultrasound in May 2014 (but I only found out retrospectively after going for a second opinion in January this year and the consultant queried it/ asked why it had been left). And so lucky and unlucky!
My tumour was between 3 and 4cm when operated on (haven’t had the path results yet and haven’t asked for them). My AFP went from 24 in January to 350 just before surgery in March.
Unfortunately I wasn’t suitable for TACE.
They did carry out a wedged pressure test and found no sign of portal hypertension and this reduced some surgical risk.
After pointing out all the risks I decided to go ahead with surgery as it was my only available option.
Sounds like you made a good choice with the surgery. So much research being done right now.
When I had the leukemia (CML) in '93 there was no cure, bone marrow transplant was experimental. Then a few years later they developed Gleevic(sp) and now it's pretty much taking a little pill for a while. It can happen for HCC or any other disease.
Thanks for sharing your story. What a great outlook you have and am glad you are feeling good and have had positive response to treatments. Sending positive mojo your way and here’s to fresh tomato sauce!
Well, I've got ~35 plants started but I can't use them all...my egg man will be getting what I don't plant, Mostly Heirloom San Marzanos and some Amish paste. My wife is Italian and you can't have too many tomatoes put up!
Sorry to hear about you diagnosis. But, we are living in good times for treatment. My diagnosis was similar to yours. I have written several things on this website. I have also gotten great support from others. So, welcome and you may be able to find some of my other discussions.
Let me just summarize where I am and hope it gives you support. I am 67 and was diagnosed with HCC stage 4 with PVVT in June 2017 given 6 months to live and no chance for a transplant. Started Y90 immediately and had good results as you. As you have found out, getting someone to tell you the next step is the most difficult. Some talked TACE others more Y90 but while this was going on I had a severe esophageal varices bleed due to the PVVT. Four days in a coma and 2 liters of blood later I was back. No one told me I should be on a beta blocker for the PVVT. Started Nadolol and no problems since. Hope you are on a beta blocker and have had no varices issues. But during the time I was in the hospital, a spot in the right lung and a spot in L4 was found. AFP was 25,000. I was started on Nexavar immediately. This was Mid September 2017. I went downhill very quickly. Lost 50lbs and could not move. By November 8, I went to new oncologist and told him to take off Nexavar. He looked me in the eyes and said, "I have something new for you and it was just approved for HCC." It was immunotherapy, Opdivo. I started that the next week. Within 6 months, my weight was back, felt super and my scans were showing improvement. I have now been on Opdivo for 18 months, 35 treatments. I still feel good. My liver tumor in 80% smaller, no lesions in lung or the back and my AFP is 1.9. My side effects have been minimal with muscle stiffness and an occasional rash. But, considering the other possible side effects or options, this is great. I am told I will be on Opdivo as long as it works and no one can predict that.
Sorry, about my long story just want to make sure you are getting a beta blocker and can get evaluated for immunotherapy.
Dave, wish you the best, stay strong and you are in my prayers. Contact me anytime.
Sounds like you're doing good...Opdivo would probably be my next treatment if things don't improve with with the Nexavar. My last real AFP# was 3800. I just had labs done last week but the lab just showed the result as >1000! The VA can be a little maddening sometimes!
No beta blocker but I have no problems with the Nexavar other than diarrhea and some cramping.
I'm interested in what the CT scan in a few weeks will show.
I love how all of you are supporting each other & sharing your stories. Don't hesitate to reach out to me if you need more information, want a second (or third) opinion, or just want to talk. My email is andrea@bluefaery.org.
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