Liver Cancer

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!

[grizwald]

try    health finder.gov  click on deseases go to quick guide to healthy living and see cancer/liver         or call Cancer Information Center 1-800-422-6237,    maybe these people can help.

  God be with you,

Griz

[Bill1954]

I’m deeply saddened to hear of your husband’s situation. Has his doctor provided a reason for not considering your husband for liver transplant? Who explained this to you; is he under the care of a GI or hepatologist?

What you are likely up against right now is the ‘Milan criteria’; this is a rule established in part by UNOS:

“In transplantation medicine, the Milan criteria are applied as a basis for selecting patients with cirrhosis and hepatocellular carcinoma for liver transplantation.

The Milan criteria state that a patient is selected for transplantation when he or she has:

    * one lesion smaller than 5 cm; or
    * up to 3 lesions smaller than 3 cm.
    * no extrahepatic manifestations
    * no vascular invasion”

http://en.wikipedia.org/wiki/Milan_criteria

I’m unclear whether procedures such as successful ablation or surgical resection change the field or not; these questions of course are best answered by his physicians. I’d encourage you both to discuss this further with his doctors and make sure you fully understand the reasoning behind their assessment.

Best of luck to you and your family-

--Bill

[Dori1231]

The tumor has already spread into his portal vein and because of this he is not a candidate for transplant.  He has been under the care of a herpetologist for the past 6 years. We are meeting with the Oncologist tomorrow so maybe I can get more info then.

[SusieS2010]

Dori8, I am so sorry to hear this terrible news. I don't know too much about the criteria for transplant but I have a friend going through this right now. She too, is not a candidate for transplant. If his tumor is 11 cm's and has grown into the portal vein, which is a vascular invasion, I can see why he is not eligible. But there are many things that csan be tried including Radiofrequncy Ablation  or Chemoembolization., or even ethanyl injections. Please don;t give up and don;t be afraid to get more than one opinion.

[22hamilton]

Thats aweful news for you two, my thoughts and wishes go out to you. Please dont give up !

That seems to be very fast growing indeed 11cm in 2 months. Is this a normal rate of growth, am just wondering what your specialist has said so far.

Maybe another opinion ?

Godbless you both.

[eureka254]

It's such a difficult and devastating diagnosis, and I'm so sorry to hear that you and your husband are having to deal with this -- my husband too was diagnosed with a similar sized liver cancer in 2007, but he's still here and kicking, and fighting it every step of the way.  Don't lose hope -- even your husband is not eligible for transplant, there are other options worth exploring.

You mentioned that the last CT scan in January was clear -- though liver cancer is known to be aggressive, 11cms of growth is highly unusual in the space of 2 months... was there any prior suspicion of any lesions?  It would be important for the oncologist to not only have copies of the current CT scan but also any previous imaging, as well as your husband's blood work results, especially results of AFP (alpha-feto protein) over the last year.  It's a good idea to ask for copies of all lab and test results at every visit, not only for your own reference, but also for situations when you're seeking a second opinion.  Hopefully your referral is to a surgical oncologist familiar with GI cancer, and not just a run-of-the-mill oncologist...

Since your husband has been seeing a hepatologist for a number of years, I presume he has hcv and/or cirrhosis?  Did your husband's doctor explain how they arrived at the diagnosis? Usually it's more than just CT Scan results; perhaps some blood work results or biopsy results? Has he had an MRI to confirm diagnosis? Depending on the stage of cirrhosis, there are targeted therapies and/or oral therapies available for liver cancer, or I should say specifically HCC, the most common liver cancer.  I hope the oncologist visit will give you both good information and options.

No one can tell you for sure "how much time"... when my husband was diagnosed, I was prepared for the worst, but with surgery, treatment, chemo and embolization, he's still doing well most days -- and it's been four years since his diagnosis.  It has not been easy, but it's been a battle worth fighting because his discomfort and pain are manageable, and we still enjoy a fairly good quality of life.  Things are certainly different, but not so difficult as to not be worthwhile.  Tell your husband: don't give up.  

My suggestion is to start writing all your questions down to take with you to doctor visits.  Sometimes the information is so overwhelming it's hard to remember what to ask, so I always found it helpful to make a list, and order them in importance so that if time ran short with the doctor, we could at least get to the important questions first.   Hope that helps some, and if you have any questions or info I can help with, just say the word.  Wishing you and your husband best of luck moving forward. ~eureka

[Dori1231]

Thank you all for your comments and support.  We met with the Oncologist, he specializes in GI cancer - particularly primary liver cancer.  He confirmed that based on the MRI he does have a tumor, it is larger than we were previously told about 13 cm.  He reviewed all previous scans, labs, and biopsy that he had on a area of his liver about 4 years ago.  He indeed confirmed that there was no cancer present prior to now, and that it is a very aggressive and fast growing cancer.  He is having a CT scan of his lungs on Wednesday because the Oncologist fears the cancer has already invaded his lungs.   He is not elegible for Radiofrequncy Ablation  or Chemoembolization., or even ethanyl injections, due to the Portal Vein invation as well as the cirrhosis.  He found out he had Hep C about 15 years ago, and has seen a Hep Dr. since that time.  At our last appointment in January - scans showed that his liver was fully cirrhotic and the Dr. told us that the chance of Liver cancer was high.  We simply had no idea that 3 months later it would be here.  Based on what the Oncologist said in all reality he has about 1 to maybe 3 months.  I am scared, I do not know what to do, how to prepare.  The Dr. said that there are many clinical trials for Stage 4 liver cancer but since the cancer is in the portal vien he is excluded from participating in them.  Basically out only hope was to take a drug called Nexavar that would give him maybe another 1 to 3 months.  But the drug cost about $5000 per month and has some pretty bad side effects.  Since at this time my husband feels fine, which was shocking to the oncologist, he does not really want to take something that will make him feel sick.  I really do not understand how someone who looks so healthy can be dieing in a couple months :(

[22hamilton]

I can only imagine where you are with this. Please stay in touch with the forum if only for emotional support.
Thinking of you both

[Bill1954]

Hi Dori-

It sounds like this oncologist is qualified and working within his scope of knowledge. In the same breath, I wouldn’t hesitate to ask him for referral to one of his peers for second opinion; just for the security of knowing you’ve done everything possible.

I suppose your husband should have input as to what drugs he wants to take and how he manages his cvondition; assuming he’s fully informed of the consequences. I’m not familiar with the drug Nexavar outside of what I just read about it; I don’t know if this is being offered to him with any therapeutic considerations, or if it’s solely of palliative value. Either way, your husband wants to ask questions and be sure he fully understands his options.

As far as how to prepare, you might ask the doctor if/when hospice care will be available to him. They can help both the patient as well as the spouse with the physical, emotional and spiritual guidance.

Still, I think good medicine would include a second opinion; the oncologist should be able to guide you to a peer.

Stick around- not too many of us are dealing with this, although Eureka254 above has been managing her husband’s care for quite a while now. She might have further thoughts to share with you.

Peace to you both,

-Bill

[eureka254]

Oh, Dori, I'm so sorry the oncologist did not have more options for your husband.  You mentioned that the doc excluded all targeted therapies because of portal vein thrombosis... were surgical options excluded too? Is the invasion such that resection of left lobe and portal vein is completely ruled out as well?

HCC progression can be very unpredictable, but I hope that your husband's lung scan is clear.  As Bill mentioned above, I would also look into seeking a second opinion, especially if no lung metastasis is identified.  I do not know how much experience your oncologist has with hcc, but it's really not unusual for even large liver tumor patients to be completely asymptomatic and feeling good.  I'm very glad that your husband is pain-free -- so perhaps he'll be the one to surprise the doctor on his prediction of one to three months as well. Feeling good and out-living his life expectancy have been the saving graces that have kept my husband going.  

My husband has never taken Nexavar, though his nurse and I have had brief discussions about it.  I don't know if your medical coverage will cover the cost, but from what I understand, some patients don't respond, but some have shown good response in extending life expectancies two- to three-fold.   My understanding is that Nexavar is considered a palliative treatment, but there appears to be some small possibility of cases of cure as well.  There was a member here a few months back (phonefixer) who had a similar diagnosis as your husband, and stated that he was cured with Nexavar, but he is not a regular visitor to this forum.  

As you say, though, it's an agonizing decision when there are no symptoms, the chances of success are small, and a distinct possibility the meds can make you feel pretty sick.   My husband has taken a very aggressive approach, taking on all possible therapies as his situation dictates, but that route is not necessarily the right one for everyone.  My husband's never-say-die attitude has postponed several pertinent discussions about end-of-life choices, but it is also a good idea to check into support options and hospice options if the situation takes a turn for the worse.  My prayers are with you and your husband, Dori.  ~eureka

[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!

[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

[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.

[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.

[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 (chronic) fatigue syndrom (syndrome) 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]

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

[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!

[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

[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

[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

[mikesimon]

I am so sorry for your loss.

Be well.
Mike

[Anne1717]

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

Anne

[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

[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.

[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.

[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

[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

[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

[copyman]

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

[evangelin]

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

[22hamilton]

Sending you my deepest sympathy

Paul

[Trish77]

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

Trish

[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.  

[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