Liver Cancer

[Dori1231]

My husband was just diagnosed with liver cancer.  Has an approximate 11 cm tumor in his lower left lobe that has grown into his Portal Vein.  He had CT scan on January 28th that was clear and now this.  I was wondering what his prognosis is?  Dr. are not really giving us any type of time frame just saying that there is not treatment and that transplant is not an option.  Please help!

[Kathy73]

I'm sorry you are going through such a difficult time. I wish I had words of wisdom to take some of your pain away. Please know that I am saying a prayer for you as I write this.
Kathy

[Dori1231]

Thank you all for your sympathy.  It has been hard.  I still can't believe that he is gone.  And I pissed that even though he was followed closely by a liver specialist for the past 10 years no one caught this damn tumor in time to try and help him.  When he was diagnosed they said that he had 1 to 3 months to live.  He lived 2 months and 1 day :(.  Considering contacting an attorney to see if I have any recourse for the AFP test not ever being ran on him.  Certainly not about the money but I do not want another person to have to be shocked with such a tragedy when a simple blood test at this 6 month check-up in December may have prolonged or saved his life.  It is sad.  I am scared and feel so alone.  

[Trish77]

I'm truly sorry for your loss, Dori.  Wish you and your family strength, comfort and peace.

Trish

[22hamilton]

Sending you my deepest sympathy

Paul

[evangelin]

I also am very sorry for your loss.
God Bless,
Ev

[copyman]

So sorry for your loss. Your story will help save others.  God bless

[eureka254]

So sorry about your loss, Dori... I hope your husband passed peacefully being at home with you and family, where he wanted to be.  Thank you for taking the time to let us know and sharing your situation at a most difficult time.  I hope you have the kind of support around that you so readily gave your husband... may you find peace and comfort through the sorrow.  Take care, and God bless. ~eureka

[Kathy73]

Dear Dori,
I am so so very sorry to hear of your husband's passing. You are a brave woman and have such strength to be able to come on here, let us know and then give valuable advice for others. May God bless and keep you and your family.
Kathy

[paen53]

I am so sorry for your loss. Thank you too for sharing your story and for the reminder to those of us with cirrhosis to stay current wiht our six month imaging and bloodwork.

Peace, Pam

[ShortLaura]

Dori,
  I send soft, gentle care your way. I could be in your husband's situation and I hope if it comes, I will have a loving family member just like you. Bless you.  You did good.

[nygirl7]

Dear Dori

How marvelous that in your horrible time of pain that you think to advise others and hopefully save some lives. You are indeed a kind and loving person and I am so sorry that this has happened to you. I pray that you have a good strong support group during this time.

Thank you and be well.

[coeric]

Dear Dori
i am so sorry that your husband passed.  thank you for sharing your story.  i know your words will help others.
Bless You,
eric

[Anne1717]

Oh Dori, I am so, so sorry you lost your husband.  All my kindest thoughts to you and your family.

Anne

[mikesimon]

I am so sorry for your loss.

Be well.
Mike

[Dori1231]

I just want to update everyone on my husbands status.  My husband passed away last night at 5:25 pm 2 months and 1 day after being diagnosed with liver cancer.  He passed peacefully at home surrounded by his family.

I would also like to warn that had my husbands Hep Dr. ran a simple blood test back in December when he had his 6 month check up, which included a CT scan and Liver functions test, then he may still be with us.  So I want you all to make sure that if you have Hep C and or Cirrhosis then please please make sure that your Dr. runs an alpha-fetoprotein (AFP) blood test.  This test could indicate that a tumor is present even if it can not be seen.  

Thank you all for your concern and support over the past 2 months

[evangelin]

I am unable to say anything to take the pain away of what you are going through but I am praying that you will be sent a very special peace that passes all understanding to help you not to feel alone. You are the second wife on Medhelp today that is in this very serious situation with their husband.  I know that all who read this wish we had some way to fix it but the best I can tell, human beings, if they are here long enough, all end up facing something that we can't imagine how we will make it through.  I am praying that everlasting arms will hold you up and see you through.  We don't get to understand "why" yet, but I think someday we will.
Prayers and a hug,
Ev

[eureka254]

My heart goes out to you and your husband; the effectiveness of Nexavar varies from person to person, and I'm sorry to hear that it doesn't appear to be working on your husband's hcc. If he's having decompensating events (trouble remembering or speaking would be one), are his doctors willing to treat the symptoms, or at least give him comfort medications to alleviate his pain?  If the Nexavar is not showing effectiveness, I hope they are at least making efforts to make him comfortable.

I don't know how strict your husband's doctors are about 'protocols' and 'standard of care', but this recent news last week about increasing Nexavar's effectiveness might be worth some discussion with your husband's docs:

http://hepatitiscnewdrugs.blogspot.com/2011/05/liver-cancer-cells-coaxed-to-commit.html

Dori, I don't know what else to say that might help, but you just need to 'talk'... we're here.  Sending prayers to you and your husband. ~eureka

[Dori1231]

Well my husband has not passed as of yet, he is very sick.  He has been taking Nexavar but based on his blood test results on the 17th it is not working his AFP went from 3300 on March 31st to 11,000.  And his Bilaruben went from 3.2 on April 25th to 6.4.  He is in a lot of pain and sleeps most of the time.  He is starting to have trouble remembering and has trouble speaking sometimes.  It is so hard to see him like this, he has lost 62 lbs in the past month.  I wish there was something that could save him.  We signed up with hospice as he does not want to go back to the hospital.  I am so scared!

[stef2011]

many doctors and hospitals in germany, swiss, austria and netherlands are using it on many patients with various cancers try to check with them.

i have found the doctor in vienna very correct, she has just started using gcmaf on some patients with hiv and cancer but i liked she just reported the real thing without heancing results or miracles promises to get money, i guess extra expensive swiss clinics might have a different approach

[stef2011]

http://www.gcmaf.eu/info/index.php?option=com_content&view=article&id=122&Itemid=56

http://www.bgli.nl/

3 labs make it, 2 in europe and 1 in israel, it doesn t require prescription in germany.getting to US is very difficult because of FDA but some with HIV and cronic fatigue syndrom are using it

difficult to say if it can help at that stage of tumor but since no treatment is available i' try it if you can easily affor it.gcmaf.eu has also lower price for people with financial problems

[stef2011]

i dont know how much this can be helpfull on advanced HCC

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WM6-50X36BY-2&_user=10&_coverDate=08%2F31%2F2010&_rdoc=1&_fmt=high&_orig=gateway&_origin=gateway&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=5d34b7e70d466833ad589936cd3c0e52&searchtype=a


Oncology/Endocrine
Vitamin D Binding Protein-Macrophage Activating Factor Inhibits HCC in SCID Mice

Purchase
$ 31.50
Koichi Nonaka M.D.*, , , Shinya Onizuka M.D., Ph.D.*, Hiromi Ishibashi M.D., Ph.D.*, Yoshihiro Uto Ph.D.†, Hitoshi Hori Ph.D.†, Toshiyuki Nakayama M.D., Ph.D.‡, Nariaki Matsuura M.D., Ph.D.§, Takashi Kanematsu M.D., Ph.D. and Hikaru Fujioka M.D., Ph.D.*
Department of Surgery, Nagasaki University Graduate School of Biomedical Sciences, Nagasaki, Japan
† Department of Life System, Institute of Technology and Science, University of Tokushima Graduate School, Tokushima, Japan
‡ Department of Pathology, Atomic Bomb Institute, Nagasaki University Graduate School of Biomedical Sciences, Nagasaki, Japan
* Clinical Research Center, National Hospital Organization Nagasaki Medical Center, Department of Hepatology, Nagasaki University Graduate School of Biomedical Sciences, Omura, Japan
§ Department of Functional Diagnostic Science, Osaka University Graduate School of Medicine, Osaka, Japan
Received 12 June 2010.  Available online 31 August 2010.
Background
A high incidence of recurrence after treatment is the most serious problem in hepatocellular carcinoma (HCC). Therefore, a new strategy for the treatment of the disease is needed. The aim of the present study was to investigate whether vitamin D binding protein-macrophage activating factor (DBP-maf) is able to inhibit the growth of HCC.
Methods
The effects of DBP-maf on endothelial cells and macrophage were evaluated by WST-1 assay and phagocytosis assay, respectively. Human HCC cells (HepG2) were implanted into the dorsum of severe combined immunodeficiency (SCID) mice. These mice were divided into control and DBP-maf treatment groups (n = 10/group). The mice in the treatment group received 40 ng/kg/d of DBP-maf for 21 d.
Results
DBP-maf showed anti-proliferative activity against endothelial cells and also activated phagocytosis by macrophages. DBP-maf inhibited the growth of HCC cells (treatment group: 126 ± 18mm3, untreated group: 1691.5 ± 546.9mm3, P = 0.0077). Histologic examinations of the tumors revealed the microvessel density was reduced and more macrophage infiltration was demonstrated in the tumor of mice in the treatment group.
Conclusion
DBP-maf has at least two novel functions, namely, an anti-angiogenic activity and tumor killing activity through the activation of macrophages. DBP-maf may therefore represent a new strategy for the treatment of HCC.

[eureka254]

As 22hamilton says, I hope you have people around you to offer you support.  As your husband is developing discomfort, did his GI or oncologist offer resources for him at the most recent visits?  Will he/you have access to pain-killers or symptom reducing meds as they occur?  

My hope is that his fever subsides and he can remain stable enough to still make another trip to ski... a big hug to you... hang in there.  My prayers are with you both.

[22hamilton]

Hi Dori just wondered what support you have around you ? Hope youre not handling all this alone, are you able to talk to people.

Please know that people are thinking of you and sending you their very best. I am in UK but am sure someone on your side of the Atlantic would talk with you if you asked.

Blessings

[Dori1231]

Thank you all for your help and support.  Surgery is not an option as the tumor is too large and the portal vein is too blocked by the tumor.  Too much of his liver is taken over by the tumor and the rest of his liver is fully cirrhotic.  

Last night he began running a very high fever, he said that he does not think that he will live much longer.  It is sad, each year we go on a family vacation skiing in Utah we were set to leave on the 15th, it would most likely be our last family vacation and now I do not think he is even going to last until then.  This is all just so hard and scary!