update on my brother/nexavar

idobelieveinfairies · Posted: Thu Jun 19, 2008 9:47 am Post subject: update on my brother/nexavar

I have read all of your post and instead of trying to give advice and share my story to everyone of them I just decided to share my brothers story of battling liver cancer under a new topic. My brother is 53. He has cirosis and hep C. Sorry bout the spelling here. He was diagnosed February 14, 2008. He just got sick like the flu one day. Really achy, breathless, not urinating much. We took him to the hospital where they did a CAT scan and MRI, found a mass, did a biopsy and it was confirmed heptocelluar carcinoma. Nothing they could do. No chemo, no radiation, no surgery. Given 4 months to live. That was 4 months and a few days ago. It has invaded the portal vein and the aortic vien. He was immediately placed with hospice. He was homeless so I moved him into a rental house next to me where he lives alone (which I do not like but don't have much choice). It is only me caring for him. We have no one else. Hospice comes once a week. I am scared to death. The nurses tell me his liver could burst and that may be quite scary but we are hoping that when or if his time comes he just goes into the sleep coma induced by the poison/amonia build up in the body. His doctor/oncologist immediately put him on Nexavar. The doctor said not only would it keep the cancer from growing but it would also help with the pain and other symptons. They made it plain to him this is not a cure, it will only slow the growth. This drug has been a godsend for us. His pain and symptons have been few even though I do see his deterioation weekly. He has experienced no side effects in the 4 months he has been on it. It is very expensive at $8,000.00 a month. Hospice donors have been paying for it but we finally got into the free med program with Bayer. He went for A CAT scan last week and the cancer has stopped growing and has shrunk the tiniest bit. His potasium, sodium and other blood work also stabilized. This medicine has given him quality of life and more time to spend with me. We are greatful. He is also on enulose (hospice says this is also his lifeline), a medicine to keep the poison/amonia flushed from the body. But it will eventually stop working. So will the nexavar. But without these two spacfic meds I do believe he would already have left us. He is also on potassuim pills, water pills (lasix), morphine and methadone. Getting your medicine in the proper quanity is very important and took us a few weeks to do. My brother is here. His liver cancer is very servere because of the vien invasions. He is still active going to Walmart, Food Lion, just moving around. Though the next day he usually sleeps all day. I don't know what to expect as this dying process takes place, we just take one day at a time. I hope my sharing my story will help. I don't mean to ramble.

idobelieveinfairies · Posted: Thu Jul 31, 2008 1:07 pm Post subject: Re: update on my brother/nexavar

Just wanted to give another update. My brother is still with me. The doctor on Monday said all of his blood work was stable and looked good for someone in my brothers condition. His stomach is swollen more these past 4 days and doesn't seem to be going down. Doctors thought it may be his salt intake but he laid off the salt and is still swollen. He is still on the Nexavar. He goes for a CAT scan on August 8th to try and see why the swelling. If the tumor is growing or just fluid retention. If the tumor has began to grow again they said they will probaly take him off the nexavar. His legs are tired and week. He still thinks well but does at times get confused. He has told me that he is lonely. He said it is a lonely that he can't really explain and that me or my family cannot fulfill. Does anyone have any way to convey to me what he may be feeling? I don't want him to feel lonely or alone. It makes me very sad to know this. I feel helpless. If he can't explain it how do I help? I will post if anything changes and will let you know what his scan says next Friday.

dllfb · Regular Joined: 24 Jul 2008 Posts: 20

So sorry for what you and your brother are going through idobelieve....
You are a gardian angel for your brother...thank goodness he has you.
Perhaps he feels alone but not lonely. Even though you are there, he feels that you cannot understand what he is going through...because you aren't really the one with this disease. Is there a support group or a social worker/psychologist in the area who could comfort him? Perhaps even a local clergyman/priest?
May God bless you and your brother at this time and never let you walk alone.

idobelieveinfairies · Posted: Fri Aug 08, 2008 12:53 pm Post subject: Thank you

dllfb - thank you for trying to help me understand. I think I will try asking him again what he means maybe he has had some time to think about it. Maybe he was talking about spiritually. I do understand what he is going through as I am myself a cancer survivor. He has recently been talking to my preacher. Maybe he will be able to better explain things to him. Again thank you for trying to help me understand what he meant.

idobelieveinfairies · Posted: Fri Aug 08, 2008 1:04 pm Post subject: My brothers CAT scan today

Today was his scan. The unofficial report was good news that they believe the cancer is still not growing. But however the bad news of his recently growing stomach is that his liver is weakning and so is his kidneys. They are testing his platlets to see about draining off the fluid but are very concerned about doing this. They said the fluid may return immediately, 3 days, weeks or month. If they leave the fluid there is a chance that it will get infected. If they take it he may bleed uncontrollably and there is still a chance for infection. The procedure is called (can't read doctors writing, I will correct later) paracentesis. They will let him know on Monday what they think he should do. I know everyone cannot tolerate Nexavar but I highly praise the medicine. It has been my brothers lifeline and I treasure every moment with him. We were robbed of our childhood being put in an separate orphanage so these are precious moments to us both.

karolynca · Regular Joined: 13 May 2008 Posts: 41

Sending many positive thoughts, in my dad's case he went into the sleep coma induce I think, at the end many of the systems stopped working. It's great news the tumor has not grown...I would say that's terrific, they will probably start controlling now his kidney function so he can have a better quality of life. I am keeping you in my thoughts.
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Dad ~ Passed away from Multiorgan failure due to secondary liver cancer on July 2008

http://cancerforums.net/viewtopic.php?p=34365

hopingforamiracle · New User Joined: 25 Aug 2008 Posts: 1

Hi there idobelieve.. you sound like you're part of the reason your brother is still with you.... what a great thing to do for him.
I was so pleased to hear about the Nexavar as my father is just starting a course and we were wondering if anyone had had any success. It gives us hope.
thanks for sharing your story and I hope your brother is still ok. Laughing

Many thanks
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hopingforamiracle

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