Any survivors willing to call me? Please Please help me save my husband

Annie_A said:

This is a huge inspiration. 

This is a huge inspiration Cathyhd.  My husband has been battling HCC since November of 2012 and when I read these discussion boards, I see people stop posting and I wonder if they passed, got better, got busy, etc. 

My husband is receiving treatment at Northwestern in Chicago.  He has had a resection with recurrence only 3 months after.  He has had 3 rounds of Y-90 and is now on his 3rd month of Sorafenib.  There are no new lesions and the lesions that were once in the liver are no longer visible.  He does have 2 lymph nodes that are enlarged; causing the team to be suspicious of recurrence to the lypmh nodes which is why the Sorafenib.  Sorafenib is really wearing him down though and I do not know how much longer he will be able to continue.  He has lost 30 pounds, his diabetes is uncontrolled, severe fatigue, shortness of breath, etc. 

In November 2013, I was cleared as his live donor for transplant but we are now playing the waiting game to see what is going to happen with these lymph nodes.  Up until we were treated by medical oncology, I loved the team at Northwestern, however, I am not happy with the choices of oncologists - we are on our 2nd one and I feel like my husband is being brushed off into the corner until he fades away.

I am considering taking him to another center and MD Anderson would be one of my choices.  We were at Mayo for a second opinion last fall (prior to Y-90 treatment) and I did like they doctor we saw there as well but he is not an oncologist.  UCSF has also been recommended.

I am desperately seeking information on how your LN recurrence was diagnosed and how it was treated.  Please message me when you get a chance.

 

Whatexactly is liver resectioning? Is it removing the tumor? My thirteen year old son just hot diagnosed withHCC. His doctors are hopingbst judres will take case because no logical doctors are experienced in pediatric liver resectiong...but is that a separate procedure from actually removing the tumor? Thank you. New to all this. And so scared for my boy

cnatekar said:

Here is My Fathers Story
My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

Chetan

Hi Chetan,

I have a similar situation with my father who is 69.

We are in the process to evaluate TARE Vs TACE Vs alternative medicine.

Could you share your experience?

Arun

offutt9 said:

liver cancer

i had RFA (radio frequency ablation) done in Cleveland, Ohio at The Cleveland Clinic... Worked wonderful for me.. I would suggest to anyone with liver cancer to check this option out with their doctor or even a 2nd or 3rd opinion. RFA is also being used on lung and other types of cancer now.RFA is overnight stay in hospital and back to work in a few days.. Any Questions, please ask...
In Gods Love....Barbara

Barbara, your story is inspiring hope in me.  thank you!  my husband, 68, has HCC.  he has a liver mass that is 25cm x 13.6 x 1.2cm.  that seems huge to me.  you said you had had one too, that couldn't be operated on.  His internest told him it has metastisized, to his lungs, several spots, up to 4 cm.  that showed up on CT.  Other organs and lymph nodes were clear.  He also had a chest x-ray to reveal the rest of his lungs.

he has lost weight and has discomfort and some pain.  otherwise he's carrying on.  he plays golf three times a week and still does all the cooking.  he is being seen at a large military teaching hospital 25 miles away.  he will see an oncologist next week.  his internest said she thought the treatment would be interventional radiology.

it is our intention to get a second opinion, a consultation.  we live aboout 65 miles from san francisco which is where UCSF is.  They are a Comprehensive Cancer Center.

barbara, what can you tell me that you think i should know?

thank you very much, and blessings to you.

milly

DeeptiP said:

I need your help desperately

Dear Chetan (cnatekar)

 

I hope your father is doing great. My father has been diagnosed with hcc today and I found hope in your father's story. My father lives in Delhi and I would be extremely grateful to you if you could share the exact details of the homeopathic and ayurvedic treatments your father received. I know it has been years and you may not even check this message but in case you do, please lease help me.

 

Thank you,

Deepti Pareek

 

Hello, I would like to start with Im so sorry to hear about your dad. My dad has currently been diagnoised with liver cancer. We have not been to the Oncologist yet, if you dont mind can you tell me what to expect in this journey or if anything you can share that you are experiencing? thanks 

cnatekar said:

Here is My Fathers Story
My father was diagnosed with HCC in July last year with a 9 cm tumor multiple nodes outside the liver (Lymph Nodes). Doctors first tried TACE followed by Sorafenib for 3 months, which took a toll on him. He lost 20 Kgs in a span of 2 months and got to a stage where he could barely get up and walk. After all this his tumor shrunk by couple of centimeters but doctors ruled out any surgical procedure due to his age (71). Towards the end of November last year, he decided to stop Sorafenib (mainly due to side effects) and this is when his real fightback started. He started alternative form of medicine (Homeopathy and Ayurveda) and some home remedies and today he is kind of reborn. He has regained most of the lost weight, walks 3-4 miles a day, got back to work and the most important part was his recent liver function test results. Most results are normal and his AFP reading is now 3.7 (used to be above 400). I am not sure if the alternate form of medicine has helped, but my father firmly believes that it is one's will to fightback. He is not worried about the tumor anymore and does not want to get a scan done as well. His main priority is quality of life. This is the story of my father who has been battling cancer for the last 10 months who believes positive attitude is the key. My father is based in India, but will be in the US for the next couple of months and if you would like to speak to him, I can connect you with him.

Chetan

My Mom has HCC too - 13 cm large and some other nodules too. She is also taking Nexavar and Ayurvedic medicines.

Can you share what Ayurvrdic medicines your Dad took so that I can compare.
Also what homeopathic medicines were useful.

My Mom is taking Liv 52, Kayakalp vati, Dekosinohills  - all ayuyrvedic.

Your help is appreciated. My email is aks3574@gmail.com.

Regards

Ajay

offutt9 said:

liver cancer
Mrs. Tigger... I feel so Blessed!!!! I no that not everyone has the same results as me but I had lesions all over both lobes and big tumors...Dr. Sipperstein at Cleveland clinic in cleveland Ohio suggested RFA Radio frequency ablation...He had never done any as large as MINE BUT i SAID YES AND IT WORKED WONDERFULLY...In 2003, they gave me 3 months to live...Its been 9 years!!! I give all the Glory to God!!!.....Please feel free to contact me if you wish and read my story at csn...Miracle in work...God has a plan for me. In Gods Love Barbara

hello Barbara, praise God for your Health! 

My dad was diagnosed today for liver cancer, he is seeing 2 Drs at the liver and cancer center(not sure of the name) but it's at the Cleveland clinic . We live in Ohio. Is this where you are referring to? i am reading that you should get a second opinion always when it comes to such a serious illness/diagnosis but actually  know my dad and he will just stay out with his original dr. It'll take time to get into another dr. And time is so important with theshe kind of diagnosis, I want his procedures done ASAP SO THE TUMORS STOP GROWING. ya know what I mean.  Should a second opinion get done in your opinion thanks so much. Brandy 

westie66 said:

Mets to the liver
Hi Andrea: I have one met to the liver (2 cm) as well as to the peritoneum from gallbladder cancer diagnosed January 2010. The liver met hasn't grown much since it was first detected and the peritoneum cancerous nodules (6 of them) have been stabilized by chemo. I had surgery April 2010 to remove my gallbladder, its tumour, and part of my liver but no one seemed to do anything about the met on the liver even though it was identified on a CT scan done several months before the surgery. Since then I've had two rounds of chemo (cisplatin + gemcitibine for 12 treatments; oxaliplatin + irenotecan + 5FU pump for 12 treatments) which worked to stabilize the peritoneum nodules. The liver met has grown a little.
I met with the oncologist today to see where we go from here. Given that the met to the liver is so small, I was sure he'd offer surgery to remove it so I can get the peritoneum stripping surgery. Much to my surprise, he said, nope, not likely, no surgery as there are already mets to the peritoneum. So I was surprised that your liver lesions are being treated surgically. I'm in Canada so that may be the reason! They tend to write you off with mets.
Can you give me more information?
Cheryl

my Mom has stage IV cancer and jaudice.  Bilirubin is 10-13 levels.  they said the can not help her anymore.  Tell me where I can get her some help?