So scared time may be running out

I know I don't post often, but I do lurk a lot(most days). Some of you may remember me posting on the caregivers thread once. I'm sorry I don't post much, I don't have great writing skills and I have a hard time getting my thoughts together.

My husband has been fighting liver disease since 1993 that we know of i'm sure it is longer than that. He was dx with chronic hep c and cirrhosis, he has always had a low viral load which is a blessing.He tried three different hepc treatments thru the years none of which cleared his virus.

Last October he was dx with liver cancer and mets to his lungs and has been on chemo ever since. The first chemo they tried was nexavar and is targeted for this type of cancer. He was unable to tolerate the nexavar so his dr put him on folfox5fu and said it only had a 20% chance of working.

Yesterday we went back to have his scans to see if the treatment helped any. But while we were their I brought it up to his dr that I felt that something else was going on with him. I told his dr about his symptoms and she decided to run some more blood work. The results of that appt. has been bitter sweet and I've been very thankful and very worried.

The scan showed that the liver tumor that had been as large as my fist was almost undetectable on the scan and the mets in his lungs were also very small. I know God has worked a mirical in our lives and his cancer is manageable .

Then his dr. told us that his labs all were very good except for the last one. She went on to explain that his blood work shows that his ammonia level are high and that explained his symptoms of confusion and why he wouldn't hardly wake up . He also has some edema that we have know about in his legs,but now he also has fluid building up in his stomach.

I have read a lot about HE and I know that's whats going on with him. I'm so scared because I don't have any idea what kind of time frame we're looking at . He is without a doubt my soulmate and we just had our 28  anniversary I really can't see life without my other half. I feel as part of me is dying along with him and I don't know how to cope with all of this.

I don't know what to expect with the up coming days. I'm trying really hard to be strong for him. I know many of you here have already walked this very lonely scary path and could use a few words of encouragement and I need to know what to expect and what steps I need to take to make this as easy as I can for my sweetie. God bless you all from a very heavy heart . Karen

(Karen I put in some paragraphs so it was easier to read your excellent, sad, long post. I didn't edit any of your words...Mama Lama)

Post Edited By Moderator (MamaLama) : 6/26/2013 12:40:46 PM (GMT-6)

Karen,

My thoughts and prayers are with you and Chuck - they have been for some time. Keep doing "the next right thing"

Lynnwood

Thank you MamaLama, his doctor told us that once the liver cancer has spread outside the liver, you will never be a candidate for a liver transplant. So that's not an option for him. He is on Lactulose,but not xifaxan so what is that. I've never heard of it . Lynn,thank you for your prayers and thoughts. I know Barb has told you whats going on with us and every prayer and good vibe is always appreciated. Hep93,thanks for your concern also. Do you know how long it will be before things progress further or maybe what I should have said what other symptoms should I look for to know things are changing again. ty all Karen

However, there are ways to obtain Xifaxan from the manufacturer free of charge. Info about this is towards the end of Hepatitis Resources (stickied near the top of the page.) Xifaxan is actually an antibiotic, but works with Lactulose to prevent encephalopathy.

To notice progression, scans would be necessary to note where else the cancer has metastasized. I honestly think that with chemoembolization, the metastasized part he now has could shrink back into the main tumor. If they can get it less than 5 cm, he would be eligible for transplant. I myself basically questioned a death sentence at Shands and went to Mayo for a 2nd opinion. They saved my life...more than once.

As part of progression, his AFP and liver enzymes would usually keep rising. If he has pain, he can receive pain medication. If he cannot be treated or transplanted, and is expected to live less than 6 mos., then Hospice should get involved. They are excellent at pain management and also giving support to the family.

Hugs,
Connie

Kay,

Connie has had good luck with chemoembolization and will be along.

Hoping this is a good treatment option for him.

Carol

Hi, Karen. I am wondering about the size of the tumor in the liver. Do you know the size? Chemoembolization will shrink the tumor, and can be done more than once (about 3 mos. later.) It takes 3 mos. for it to do its job completely. At that 3-month mark, he would be scanned again to determine the size. And he could be treated again if it's still detectable. I was told that it doesn't kill the tumor, but only shrinks it and buys time. However, I've known of a few people here who did eradicate the tumor completely with chemoembolization.

The lungs are a different story...treated differently.

When I had my first HCC, it had metastasized to the inferior vena cava. When they did chemoembolization and then TheraSphere, it shrunk it back into the main tumor. That's what I was talking about in a previous post, but the lungs are a different matter. Since I did receive a transplant after the 2nd tumor appeared, that metastasis rule did not strictly apply. But that whole rt. lobe had been removed and I no longer had the tumor anywhere, except the new one on the remaining left lobe. So that made the difference.

I received chemoembolization on the left-sided tumor once before the transplant, as it was approaching 5 cm, the cut-off point for transplant.

Hugs,
Connie