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 Posted: Mon Oct 19, 2009 4:54 pm
That's the surgery I had, a liver resection! My tumor was only a little smaller than his, 16 cm. It'll take him a bit of time to recover but he should be okay. heart
Please look into cholangiocarcinoma, or bile duct cancer. My tumor grew on my liver the same way, but it came from the bile ducts. It's rarely diagnosed but a lot of people are incorrectly diagnosed with other things.
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Posted: Fri Oct 23, 2009 1:05 pm
Well they did a biopsy yesterday and we are waiting for the call about the results. They are making sure it is in fact Hepatocellular carcinoma. Right now the doctor says it needs to be shrunk before surgery can be done.
Apparently his is around the artery in your liver and so far they have said its inoperable but we found a new doc that says if chemo embolization can shrink it then he think he can either do a resection or at least put my Dad on the transplant list. However a living donor is out. He would need too much liver for it to be safe for a donor who was his size much less one of us who are smaller which sucks.
This new guy, Dr Goss, is just wonderful. He actually wants to do something unlike MD Anderson who basically said it was too late and he had about 5 months.
On monday we start the chemo and then its all about keeping our fingers crossed and hoping we can get to a place where other options are available. Right now he's soooo skinny, he used to be 6'2 and 230 pounds now he's about 180, but his stomach of course still sticks out due to the tumor. His ankles also are really swollen and he's still throwing up half of what he eats sad
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Posted: Fri Oct 23, 2009 10:20 pm
OMG. Well we got the biopsy results today and my dad does not have Liver Cancer.
I'm going to sidetrack a bit and say WTF MD Anderson! They wouldnt do a biopsy, they wouldn't do chemo, and if we had not sought a second opinion ... well I dont even want to think about it.
So what my Dad has is a very rare germ cell tumor. Usually these form in the ovaries or gonads,(and then spread) however his is weird in that it only seems to be in his liver. I am SOOO glad they did that biopsy because the chemo embolization would not have worked and would have ended up damaging his liver more.
So monday he is going in for a different kind of chemo that will put him in the hospital for 4-5 days.
This is semi-good news. The size and placement of the tumor still means he has a poor prognosis. Funny enough, he was considered really young to have liver cancer, but he's really old to have this. A slightly good thing is that while chemo cannot cure liver cancer, it does have a much better effect on this.
So we are still waiting and hoping. One other bad thing is that a normal persons AFP level is like 10 and his is over 2000, which is why they want him in the hospital. Its not exactly good news but its nice to know for sure.
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Posted: Fri Oct 23, 2009 10:57 pm
I pray that this chemo can fix this, and shrink the tumor to operable size. Good news on the no cancer thing though. *high fives*
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Posted: Wed Nov 18, 2009 9:47 am
Well it turns out the germ cell tumor is malignant its just not primary liver cancer which has a much more dire prognosis than this.
I am as we speak sitting next to him while he does his second round of chemo, and his doc says that by the end of December we should get an idea on whether surgery can be done!
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Posted: Wed Nov 18, 2009 10:48 pm
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Posted: Fri Dec 04, 2009 10:19 am
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Posted: Fri Dec 11, 2009 1:03 pm
Sorry I havent been on in a while! Well the first round of chemo went fine, the second round he was vomiting blood sad
He just finished the third round yesterday and so far the new meds they've given him have worked ok. He's gone fro 230lbs to 161lbs which sucks
BUT, on 12-22-09 he is getting a CT Scan done and then doc says he might have to do one more round of chemo, but he thinks in January we might be able to do a resection! As long as the tumor is not in an inoperable position!!!
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Posted: Fri Dec 11, 2009 5:58 pm
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Posted: Mon Dec 14, 2009 4:26 pm
The chemos been pretty bad, he's lost almost 70 pounds total ans he wasnt overweight to begin with, so if he does do another round then he is going to ask to do it in the hospital.
But I am going crazy waiting for next Tuesday, I really hope the results are good! It feels like its been so long but really it was less than 2 months ago, that we first went to MD Anderson and they said nothing could be done and he only had 5 months. There's been alot of ups and downs.
I will say this, before, I honestly had no real feelings about cancer. I mean I felt for those who had it, but it didnt really touch me. I never really knew anyone who had it, except in the last year or so and now, I cant believe how many people around me have had it or has someone close to them who does.
I kinda wonder if it is something that is getting more common in this technological age. I just used to never hear about anyone having it and now it seems much more prevalent.
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Posted: Tue Dec 15, 2009 11:04 am
I believe it's more prevalent than it used to be, but I also believe many died of cancer WAY back, and no one knew they had it (like the 1800's and before). We use too many chemicals in life now, and it's crazy what that stuff does to your body. Breathing causes cancer now. Can't get away from the chemicals and toxins, no matter what you do. You can only lessen your exposure. Good luck to your dad. I hope he doesn't need another round, but it's wonderful that he tumor is responding.
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Posted: Sun Jul 18, 2010 12:22 am
So It's been over 6 months since I've said anything.... things are a rollercoaster.
My dad continued chemo until Feb, then they decided to try something called radiation spheres. Basically they take itty bitty spheres, radiate them (they are metal and hold radiation for up to 3 months) and then place them in the artery leading to the tumor. Thus giving you radiation from inside your body.
Before this procedure the tumor had gone from 20cm(at the beginning, when found) to almost 10 cm. However my dad was 6'1 and 230lbs and is now about 140lbs. So they didnt think he could do that really strong chemo anymore.
He was on the spheres, but while he felt better from not having the chemo (the spheres have no real side effects) his red cell counts continued to be low, despite not having chemo to kill them off. He's had to do many, many transfusions.
In early June he started feeling really bad again and we found out the tumor is now 22cm. sad Also in his last scan they notice a left L3 vertebral body lesion, possibly metastasis, and that his lymph nodes were slightly enlarged.
Also while the tumor is 22 cm wide, it is also 6 more cm deeper, which means there is now potentially right atrial invasion.
Basically this reduces the chance of it being operable. The one good thing is that though it is bigger than ever, part of it is dead (necrotic) and some appears to be filled with blood, not mass.
They recently started him on a different chemo, one thats less strong, but all we can do is hope. He honestly feels like its a losing battle, which hurts a lot but he's still wanting to try treatment thank goodness!
It feels like we gain a little ground and then lose it immediately...
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Posted: Wed Jul 21, 2010 1:08 pm
Wow. That really is a roller coaster ride. Still praying for the best!
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Posted: Sat Aug 07, 2010 10:20 pm
Bleh, tumor is now 24cm and the new chemo has had no effect. So now they are trying another kind.
Thank you so much for the prayers and just letting me rant, it really does help, all of it
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Posted: Sun Aug 15, 2010 11:12 am
Still praying though. It's hard watching this happen to someone you love.
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