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Hepatitis B, Metastasised Liver cancer, unresectable, untransplantable

chandrain
Posts: 1
Joined: Nov 2008

Hello,

My brother, 28, has a real ugly(Hepatitis B, Metastasised Liver cancer (spread to the portal vein), unresectable, untransplantable)Liver Cancer (HCC) unfortunately detected very late(Oct 2, 2008). Now, he has been on Nexavar since then and has been taking alternative medical treatment (Herbal).

The latest scans show no change in the cancer's state (neither worsen nor healed); off late he has got bedridden due to Jaundice and has got swellings on limbs and stomach.

Doctors had no hope when the cancer was detected and we are losing hopes now. I'll be grateful to you a million times if you suggest a way out, tell me life expectancy quantitatively or give me some hope in this case.

Thanks,
Chandra

sylviaw
Posts: 19
Joined: Oct 2008

Chandra,
All I can tell you is what my oncologist told me when I asked how much time I had. He said that he sees people come into his office every day with cancer that should kill them within a couple of weeks and others that he just knows he can cure completely. He says he is fooled too often for him to predict anyone's time left anymore.

He said that those who look as though they are going to die any minute sometimes go for years and years. The others that he thinks that should be cured, die within a few weeks, no matter what the treatment he gives that usually works. This oncologist is highly respected in his field and even MD Anderson in Houston told me to stick with him because he was one of the best they had seen. He says it is completely up to God, and yet, he is not even a strong Christian or Jewish. He just knows God from experience and knows that God will take the ones He wants when He is ready no matter what we would like.

I certainly try to change his mind a lot, and at times, think I have. Just get everyone you know to pray for him, especially children. I hate to admit it, but I use children a lot because God likes to build their faith. God bless you with His peace. SW

married
Posts: 2
Joined: Feb 2009

what is your oncologist suggesting for you to do, as far as treatments go? I'm guessing that you have liver cancer as well, although, I am new here and may not be seeing all the posts. Most of the ones that I have looked at are old. I hope you are still hoping.

God likes to build all of our faith's. Christ said that all things were possible to him who believes...and the father of the sick son, replied...I do believe, only help my unbelief.

I am struggling with my faith in the medical field, so when we reach the end of ourselves where else can we turn but to the Healer? Sometimes I believe that when we're looking for miracles, he supplies them through the most common way. I have to believe that He wants us to seek the best medical care possible, and then combine it with our prayers for healing.

We have not been having much luck with our current Oncology staff. It's as if they see a person with no hope of saving, so why bother with return phone calls for biopsy results, changing/resuming meds, help with concerns (like is he getting ready to have a heart attack?). We've actually gotten better response from the Nexavar nurses and liver surgeon.

God's healing..
M

married
Posts: 2
Joined: Feb 2009

My husband was diagnosed with liver cancer on Jan 9,'09 but it had already metasticized to the lymphnodes, and small spots on other organs. He has started Nexavar as the only method of treatment, well, not only, but most recommended. The cancer is stage 4, advanced and cannot be surgically removed. It was 10cm when found. He has lost 50 lbs in less than 2 months. Do you think the Nexavar is a good choice? Does anyone have any suggestions or different treatments that might be available?

letaiam
Posts: 1
Joined: Apr 2009

Your story is almost identical to mine. My husband's tumor was found by accident when he was hospitalized for a stomach infection and the hospital did an MRI on his liver due to the HepB. He tried Nexavar for a couple months with no positive effects. His tumor was 9cc when found and untreatable. He initially lost quite a bit of weight but it was mostly due to being overmedicated to control his pain. He went on hospice a couple months ago and that has really saved us. We have one physician managing his pain meds and he is doing so much better and is now eating well and has gained back almost 20 pounds. Drinks a lot of milk shakes made with bananas or strawberries, etc. I have been told to let him have anything that sounds good to him. Thought I was going to have to take out stock in Rice Krispies. His major pain medication is Methadone and I consider it a miracle drug. A lot of physicians don't like to use it, but it has been very effective in controlling pain without the side effects of being loopy. One note, he had to go off the Nexavar to be on hospice, but as it wasn't giving him any positive results, it was worth it to get the extraordinary help that hospice has given us. They are amazing people and not only take care of the patient, but take care of the caregivers also.

Carrie235
Posts: 1
Joined: Mar 2009

My moms story is similar. She is 74 and was diagnosed with HCC on Feb. 14, 2009. They found a tumor the size of a "large orange" in her liver when we took her to the ER for stomach pains. She has seen a liver specialist for years because she has Primary Biliary Cirrosis. They did a blood test every 6 months to screen her liver. Her AFP level didn't show an increase until her HCC was advanced. Don't know why a CT was never done in this screening process-saving insurance $ maybe?? Anyway, this is advanced stage primary liver cancer, unresectable, not a transplant candidate, 6 months to live. Mom is now on Oxycontin and Vicodine for pain. She tried the Nexavar for a month, but developed terrible sores in her mouth and tongue. She lost 7 pounds last week(down to 91 lbs.), so they took her off the Nexavar. I have so many questions I don't know where to begin....Her Oncologist says they won't do any more CT scans(or other tests for that matter)since they won't change the treatment/prognosis. Even when we asked about the blood test results he acted surprised and asked "why would you want to know that?" It seems like their attitute is that once they tell you your terminal prognosis, you shouldn't want to know how it's progressing. They haven't done any tests to see if there are mets to lungs/bones, etc. I guess it just doesn't matter at this point? They also have never mentioned hospice. Can you not get hospice while on Nexavar? Sorry I'm rambling, just sooooo worried and confused. Thanks!

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