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 Posted: Fri Oct 02, 2009 3:00 pm
Today was the first time we have talked to a doctor who didnt run us around/waste time.
To update, my Dad was diagnosed September 17, 2009 with liver cancer. He complained of pain for a couple weeks, they thought it might be a bladder infection, then ulcers, then they did a CT scan and found a large tumor on his liver. We live in a smallish town in Texas but an hour away is MD Anderson Cancer Center, the #1 rated in the world, so I was hopefull.
I found out the only way to cure liver cancer is with a surgery called resection (where they remove the tumor and part of your liver) or a transplant. Chemo can give you added time but it cannot cure it apparently. I found out if you have a large tumor, which they called 5cm and up, surgery might be too dangerous. My dads was 16cm, the doctor we were seeing made it sound like no hope was available.
I wanted a second opinion from MD Anderson, so we were sent to the GI clinic to get a biopsy, but they said the risk of bleeding was too great. Your liver has an artery and a bunch of blood vessels going through it I found out, which is what made it so dangerous. They told us we could do an MRI and an endoscopy to make sure there was no other cancer elsewhere.
This place was making me mad. They wanted a week between each of the above and then over a week to dicuss the results!! They also kept coming up with more tests that had my stepmom and I feeling like they just wanted more money. We finally got ahold of MD Anderson and they said that they most likely would need a biopsy before admitting.
I was about ready to pull my hair out. Then this morning we went to the GI clinic and met with their partner, a Dr Lee. He was soooooo wonderful! He said we should see a heptologist (sp?) and then called the best one he knew and got him to fit my dad in on monday. Then he said we didn't need a biopsy and that according to tumor markers, 400 was cancerous, 10,000 was too dangerous for a biopsy, and my dad was a little over 121,000. Then he got us all the papers and reports we would need to see MD Anderson!
Finally I feel like we are moving forward
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Posted: Fri Oct 02, 2009 3:12 pm
I'm adding this post to keep track of my battle to make my Dad take part of my liver!
I found out in my research that with bonemarrow, kidney, lung, and liver you could do LIVING transplants.
With your liver, it can regenerate so the donor gives anywhere from 40-60% (with an adult) and within a couple months both livers are normal size.
To donate you have to be in good health, the same bloodtype, similar body size, and not pregnant. They do a bunch of tests which include making sure your blood doesnt attack theirs, check your blood vessels with a scan, and making sure your liver is in good shape and large enough. Also you have to pass a pysch eval
Its a major invasive abdominal surgery. They toss out your gallbladder cause its in the way (okay not literally) and they have to clamp off your blood vessels and bile duct and it will last 5-8hrs. For the giver, you are in ICU for a day, then the hospital for 5-7 days. You can't work for 6-8 weeks, or pick up anything over 10 pounds. They also say you won't feel completely normal for up to a year. A person who did it likened the pain afterwards to being hit by a truck then run over.
Now for the taker, the surgery is similar though it last 9-13 hrs and of course you are on immune suppressants. They will be in ICU for 1-3 days and in the hospital for about 3 weeks. And you will need sonstant checks ups for the next 6 months and more sparringly for up to the next 5 yrs.
The risk for the giver is anywhere between 1%-.05% and of course it is much higher for the taker. Common problems are infection and bile duct leaks. Also the taker will be on meds for the rest of their life and will always have to be carefull about sickness. Living transplant recipients have a slightly higher chance than those with cadaver transplants due to the fact they are usually healthier when they received the transplant. To be at the top of the list for a transplant you have to be in ICU and you cannot have the cancer elsewhere (for liver anyway)
arrow So my Dad currently is okay, his liver functions are well but I'm of the mind that the sooner the better. Right now we need to find out his blood type but there are 3 kids (out of six) that are over 18, which you have to be to donate. I'm 24 and O+, my brother is 21 and A+, and my sister is 26 and will find out hers sunday.
Now my brother is prolly the best because he is closest in height and weight, then me, and then my scawny sister. All of us are willing but my dad is not going for it.
He worries if something happened to us and so far I've gotten him to concede that if he becomes bedridden he will start the process for it. I am still working on convincing him.
Quote: MY DATAS.... --> An experience http://www.livingdonorsonline.org/experiences/Tammy.htm-->What is the outlook for liver transplant patients? The outlook for patients is often expressed as a five-year survival rate. This refers to the percentage of liver transplant patients who are still alive five years after their transplant. The five-year survival rate for liver transplant patients is about 75 percent. Patients who receive livers from living donors have a slightly higher survival rate than patients whose livers came from deceased donors. http://www.liverfoundation.org/education/info/transplant/ -->With the shortage of donor organs and the need to match donor and patient blood and body type, the waiting time may be long. A patient with a very common blood type has less chance of quickly finding a suitable liver because so many others with his or her blood type also need livers. Such patients are likely to receive a liver only if they are in the intensive care unit and have very severe liver disease. A patient with an uncommon blood type may receive a transplant more quickly if a matching liver is identified because people higher on the transplant list may not have this unusual blood type. http://www.emedicinehealth.com/liver_transplant/article_em.htm Also if you go here: http://optn.transplant.hrsa.gov/latestData/stateData.asp?type=state You can generate reports to see how many people for your state is on the waiting list for an organ. It can break it down by blood type, age, and plenty others! CHECK IT OUT
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Posted: Sat Oct 03, 2009 9:39 am
Good luck. I really hope that everything works out for you. Keep us posted on how things are going.
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Posted: Mon Oct 05, 2009 4:50 pm
Saw the hepatologist today. They wont do transplants with tumors larger than 7cm. Not only is my dads 16cm but they think it might have gotten bigger. Growing means its more likely to have spread, but they want to try this new drug. Bad thing is the copay for one pill is $300 and he will need two a day and well, we are trying to get loans and borrow money.
I've been pretty upset all day, the doc said if his liver functions werent okay he'd have him go to a hospice. We still havent heard from MD Anderson but next tues he has an appt with an oncologist to see about the new drug and to ask about time
I just... my youngest brother is only 8, its just too much right now
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Posted: Mon Oct 05, 2009 6:36 pm
I'm so sorry, Honey. That's not good news at all. I wish there was something we could do through Gaia.
I'm surprised that the co-pay of one pill is so high. I don't think the insurance companies can do that. But I'm not 100% sure. Pharmaceutical companies just strip you of all your money and dignity with those types of medications. They know if you don't get them you'll die. Totally unfair way to run a business!
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Posted: Tue Oct 06, 2009 7:11 pm
Well the pill itself is 1600 and the copay 300, I'm not certain on the spelling but its pronounced nex-a-mar. Its supposed to cut off the blood supply to the tumor, I think the hope is they can get it to shrink enough the transplant option becomes available, but the doctor didnt seem to think it was likely to shrink the 10 cm needed.
I'm still keeping my fingers crossed, and looking into throwing a benefit or some such to help with the financial aspects
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Posted: Tue Oct 06, 2009 9:49 pm
Saber Alli Well the pill itself is 1600 and the copay 300, I'm not certain on the spelling but its pronounced nex-a-mar. Its supposed to cut off the blood supply to the tumor, I think the hope is they can get it to shrink enough the transplant option becomes available, but the doctor didnt seem to think it was likely to shrink the 10 cm needed.
I'm still keeping my fingers crossed, and looking into throwing a benefit or some such to help with the financial aspects
Schools, local cancer society groups, churches, can all help with something, like a spaghetti dinner thing, or bake sale, or something to help raise money on an ongoing basis. The hospital social worker should have all sorts of information on that.
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Posted: Sat Oct 10, 2009 12:04 am
Well he went to MD Anderson yesterday though it was just for tests right now. He had the ever famous pee into a cup, blood test, X rays, and finally a MRI. They wanted to do another CAT Scan but the insurance said no (since he had one last week I'm guessing) and those apparently are about 3k if you pay yourself, so we are holding off for now.
Monday he sees the oncologist at MD where they will hopefully have all the results back. Then Tuesday he sees another oncologist at St Lukes, that was scheduled a few days ago.
I looked into that pill (which is called NexaVar, actually) and from what I can tell it releases an enzyme into your blood that travels to the tumor and stops the tumor from growing. I think my Dad was into that because he thought it would be less crappy than chemo but my stepmom went to the website and started reading off the list of side effects (of which there are alot) and now he's a bit more open to chemo.
I did some research (my librarian knows my name now from all the hours I've spent) and I think chemo embolization sounds the best. And since its done directly in the hepatic artery inside the liver it's side effects arent quite as bad as systematic chemo. But we'll see what the doctors say next week.
Once we figure out where we are doing treatment and what kind I'm going to find me a social worker to ask there.
Thank you so much for that info!! heart
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Posted: Sat Oct 10, 2009 5:29 pm
No problem. The hospital should have already offered those services, actually. But find them. biggrin They'll help with finding help with money.
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Posted: Mon Oct 12, 2009 3:40 pm
Found out his tumor is now 19 cm cry
Right now my parents are in Houston waiting to see the oncologist.
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Posted: Mon Oct 12, 2009 9:22 pm
Sorry it's looking so bleak. *hugs*
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Posted: Tue Oct 13, 2009 1:37 am
Well... it's not good. At all.
His liver is too weak for chemo, they think if they try it he'll go into liver failure, so they are doing that Nexavar drug. The doctor says it will keep it from growing more, but wont shrink it.
Right now they're saying no more than 6 months
Tomorrow is the second opinion appt so we'll see what they say, though I dont think it will be radically different
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Posted: Tue Oct 13, 2009 10:58 am
And absolutely no way you can do the living donor thing?
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Posted: Wed Oct 14, 2009 6:11 pm
No they said that transplants done where the tumor is larger than 7cm have a 100% chance of the cancer coming back so they wont do it.
What makes me angry is even my dad said if they hadnt dicked around for 2 weeks sending him here and there for more tests (and more money) he prolly would have been able to do the chemo back when the tumor was 16cm and his liver still strong. Then there would be a chance of it shrinking and the perhaps a transplant.
Also making this bad is none of the doctors have any clue why he got it. They keep doing CT scans and such cause they thought for sure it was a secondary cancer but its not. Primary liver cancer is very rare in the US though very common in Asia and Africa. You either have hepatitis B or C, cirrohsis, history of alcohol abuse or its secondary cancer. He has none of those!
A good friend of mine named Cody, lost his mom to liver cancer just over a year ago. She had gotten hepatitis c from a blood transfusion back before they screened and he said it was horrible at the end. When your liver doesnt work right toxins build up and he said she had so many tubes and she was out of it all the time, didnt reconize anyone. I think my Dad is scared of that, he made a comment the other day about how a car crash would be easier.
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Posted: Wed Oct 14, 2009 11:14 pm
I feel him on that one. Totally understand. Watched my great aunt die of lung cancer, very slowly, because my gramma didn't want her to die an addict...she wouldn't allow morphine to be used. Aunt Jesse was too out of it to make decisions, and nothing we said would change her mind. After watching Aunt Jesse die, I totally believe Dr. Kavorkian to be right in what he did. A close family friend, also dying of lung cancer, went home to die. She got as much morphine as she wanted, so she took a little too much after saying goodbye to her family, and went on HER terms, not the cancer's...surrounded by her family, who loved her. I don't know YOUR personal beliefs, but follow your father's wishes, if you can. Don't give up hope, until he gives up hope....Prayers work wonders. But, believe it or not, you're already starting the grieving process. It's tough. We're here for the ranting and venting you'll need to do.
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