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HCC long time survivors

vazquez7
Posts: 8
Joined: May 2010

Hello,

Just wondering if there are any other folks on here treated for HCC doing well? I am heading into my 5th year post resection and would love to find others. Thanks

XtremediverHCC
Posts: 59
Joined: Feb 2011

Congratulations, glad to hear your surviving as you approach the 5 year mark. I will hit the 5 year mark from my first diagnosis in late December. I had a recurrence 3 years post resection, with RFA to treat and am presently not experiencing any changes other than some slightly enlarged lymph nodes per my MRI results from just 2 weeks ago. It is statistically a small margin who make it 5 years unless they are detected early. I get a MRI usually every 3-6 months for just that reason. Cirrhosis was due to Hep-C contracted during Vietnam war days, but have cleared the virus for about 6-7 years now following the treatment for it. University of Michigan hospital is watching me well and I feel very fortunate to have the doctors and support staff working for me that I have. Keep the faith!

vazquez7
Posts: 8
Joined: May 2010

Thanks for responding. I had a stage 1 encapsulated tumor that I discovered myself. I had no symptoms or risk factors. It was removed and had not spread. I did nothing afterwards but just changed my diet and went to Mexico for alternative care. I am doing well. I had my mri 2 days ago and all is well. I will continue with afp's and a scan every so often just for peace of mind. I feel blessed to be here and to be doing well. I am glad to hear you are doing well also. Take care

slg
Posts: 200
Joined: Jan 2010

Hello,
My husband is fighting for his life as we speak. He also has Hep C from Vietnam and cirrhosis along with cancer. We are trying to get him back on the trasnplant list and are heading out to Kansas City for a DynaCT and RFA to take care of one lst tumor.
Just wondering how you got the Hep C and what did you do to treat it?

Thanks.

SLG

XtremediverHCC
Posts: 59
Joined: Feb 2011

Hey SLG,
I can only speculate on how I contracted the HEP-C. I believe (as do the majority of Vietnam vets) that the air guns used to inject us with vaccinations prior to our deployment was the root cause. If the person inline in front of you had the virus, and they moved or flinched and was cut while the vaccinations were being injected, then the next person(s) in line would be injected with the same blood and the virus. The medics never wiped the blood from the air guns as that just wasn't the practice back then. Hep-C had no name and was not even recognized until 1991. I was on Peg-Interferon injections for 48 weeks and went through that twice. It kicked my butt! I have been undetectable very since. Of course, it was only a short time before the HCC was discovered and everything that it entails. I hope your husband gets his new liver-he earned it in Vietnam, we all did!!!

slg
Posts: 200
Joined: Jan 2010

Thanks for responding XtremediverHCC,

That is exacting the same story my husband told me. We figured that was how he caught Hep C. Shame on the Veterans Administration for not helping you Vets more!!!
I am hoping that this next procedure puts my husband back in criteria and he gets his transplant soon. I don't know how much longer he can hang on. I want him here in 5 years (or more) like you and others!!

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

Wish I could say my dad was doing well, he had a resection in May 2010 for one 9 cm tumor but it recurred with vengance three months later and is not in his lungs and peritoneum. No hep c or cirrhosis no ris factors just one of the unlucky ones they told him. slg i feel you my dad is fighting as we speak also he is only 55.

march00
Posts: 20
Joined: Sep 2011

I am 55 and I have a 12cm on my left lobe, they are going to remove the left lobe tuesday. I have the Hep C.
I am very active, playing full court baseketball often until they discovered...

Nick

XtremediverHCC
Posts: 59
Joined: Feb 2011

Hey SLG, I am not an expert, but from what my doctors have told me the VA will pickup the tab for his treatments if need be. It is one of the rights we acquired for doing our time in-country during the Vietnam War era. I would contact your local VFW or even the VA directly to know for certain. University of Michigan hospital is right next door to the VA hospital in Ann Arbor, Michigan and many of the specialist do double duty with the VA hospital, that is why my Liver doctor seems to know so much. My personal healthcare provider paid all of my medical for the Hep-c treatments, but when/IF it's time for my transplant, I will certainly avail myself to those VA benefits. Good luck!

slg
Posts: 200
Joined: Jan 2010

We actually looked into him getting help fromt he VA back when he was first diagnosed and they base it on how muhc $$ you made the previous year which at the time he had been working 6 day/12 hrs. a day so he was a bit over the limit. We have not pursued it since because of all that has been going on. If he were to have gone to them in the beginning he would have been placed on the transplant list in CA which is a very very long wait. So my husband's Dr. said he is better off sticking with Kansas for the moment. If he ever gets to the point that he can be treated for Hep C then we will definately go back to the VA as our whole financial situation has changed drastically.
Thanks for the info.

Darryl2010
Posts: 15
Joined: Dec 2010

I was diagnosed with a 19cm tumor on my liver in May 2010. No Hep-C, no cirrhosis and no other apparent risk factors. My FL doctor basically gave me the names of the 5 best cancer hospitals in the US and told me that he couldnt do anything for me. I chose MD Anderson in Houston and have been coming here ever since (I'm writing this from there, now). I had a resection of 70% of my liver in Aug. 2010 but it had metastasized to the peritoneal cavity by Nov. I've tried a chemo regime called PIAF (Interferon and three others - didnt work), Nexevar (didn't work), a phase II clinical trial of Avastin and Tarceva (also didnt work) and am now in a phase I clinical trial of a German made drug called EMD Orange. I'm keeping my fingers crossed.

The thing is, being the smart, Internet-savvy guy that I am, I did an extensive amount of research into the published statistics for this disease. I don't mind saying they scared the bejesus out of me. 50% dead within 5.5 months - 70% dead within 1 year of diagnosis. Wow. My wife and I didn't know what to do. However, my Houston oncologist basically promised me that I would beat the statistics, and so far I have. My FL oncologist gave me a talk about little successes. Maybe I'll never be free of HCC - but all of the treatment I'm receiving is certainly slowing it's advance. And, I'm still here 15 months after my diagnosis and still able to function pretty well. I can't run like I did, but I can walk. I need to take frequent naps during some days, but I'm still getting out of bed each morning. I don't know what I have left, but I'll take each day as it comes and enjoy it. Maybe I'll be lucky enough to join you at the five year mark. Who knows?

Wish you all good health,
Darryl

mhrosado
Posts: 37
Joined: Jan 2011

Wishing you good health also. sounds like you are doing well. I tell my husband that the statistics are just that and they dont have to be true for him. he was given from 2 - 6 months and its now been 17months since diagnosis. not cured but not letting this thing get the better of him. he now takes the dog for a walk and helps with the laundry. we are trying to enjoy every single minute that we have together. good luck to you. keep positive, take your nutrition shakes, stop eating meat, and continue to be positive. love and prayers.

agt_dht
Posts: 15
Joined: Feb 2011

Darryl2010 - Like you, my husband was diagnosed in May 2010 with HCC - same story as you regarding risk factors. He chose a clinical trial close to home in San Francisco for treatment (Nexavar and erlotinib/placebo), which was stopped a little after six months because of a spot in another lobe that was assumed to be a new tumor. Like you, he can still walk, still get out of bed, needs lots of sleep, but fights through the fatigue. He has already defied a few predictions about his quality of life once treatment stopped, and we pray each day to accomplish whatever purpose God has for us, even if that means rest and sleep to replenish for another day. Thank God for all of you who are determined to live as fully as you can, as long as you can. It's an inspiration, and I am grateful for every's patient courage in the face of the unknown we all face.

tankcar
Posts: 3
Joined: Sep 2011

My mom has recently been diagnosed with an 11cm HCC tumor in her liver. She is currently receiving chemo (gemzar/cisplatin)at MD Anderson in Orlando. I read that you were treated at MD in Houston and would love to know what the Drs. name is that performed your surgery? Had your tumor spread to the liver and was it contained to one lobe? Thanks for sharing your story. Praying for a positive outcome with your clinical trial.

Darryl2010
Posts: 15
Joined: Dec 2010

Hi tankcar,
My surgeon was Dr. J. Nicolas Vauthey who you can contact thru his PA, Steven Wei (713) 745-3814. My TX oncologist is Dr. Ahmed O. Kaseb (713) 792-2828.

I had a 19cm tumor on the right lobe of my liver which was resected in August of 2010. Unfortunately, it was found to have metastisized to the peritineol cavity, basically the area of fatty tissue just below your diaphram. That is what I've been fighting since last Nov. of 2010. I went thru a chemo series (cisplatin was one of four in the cocktail) which didn't stop the growth and I have now completed my second clinical trial without success - cancer keeps growing. They've recommended another trial using Valproic acid (an old seizure drug) and Sutent, which is approved for other cancers. However, my insurance company has initially denied the Sutent and, at $9600/month, I don't know where that will leave me because I will not exhaust my savings in that way. We'll see.

Here's something interesting for you. My insurance company, United Health Care, doesn't recognize nor will they pay for any treatment at MD Anderson in FL (I live 50 mi. from Orlando, BTW. LOL!) They do, however, recognize MD Anderson in TX. I'm glad I found that out early, because MD Anderson in TX is consistantly ranked as the #1 cancer hospital by US News & World Report and is also the leader in clinical trials. Good to know if that is needed.

I hope your Mom responds well to her chemo treatment. However, don't let anyone tell you that an 11cm tumor cannot be operated on (as they did me). If she is otherwise healthy and, particularly, if she has an otherwise healthy liver free of cirrhosis and Hep B/C as you indicate, she will likely be a good candidate for surgical removal of the tumor.

Good Luck! Darryl

tankcar
Posts: 3
Joined: Sep 2011

I appreciate you sharing your information with me. Everyday new treatments are being developed and we will pray that a cure will be found soon for you, my mom, and many others that are fighting each day.

Mako181
Posts: 13
Joined: Jun 2010

I have a history of HepC and beginning in 1999 have used Interferon/Ribarviran, Pegalated Interferon, and Infergen as I tried unsuccessfully to erradicate the virus. In May 2008 I saw the doctor for an uncomfortable pain in my right side. In June 2008 I was diagnosed with terminal liver cancer and given 30 days to live. I began Nexavar 10 days later as well as being faithful to a nutritional shake my wife insisted we try. Three years later, I am still here, still taking Nexavar daily, still faithful to the nutritional shake, alive, and cancer free as of July 2010, with no surgeries or invasive procedures. I also watch what I eat and try to consume only "liver friendly" meals, (low fat, non-processed food). I do nap each day and the heat in the South is extremely hard on me, but I believe that is a result of being on the Nexavar. I am looking forward to cooler weather, but in the meantime I am thankful for air conditioning!

Suitor
Posts: 1
Joined: Sep 2011

I was diagnosed in May 2011. Given a long 9 months to live. I relocated from Seattle to Pittsburgh for personal reasons this August. UPMC strongly recommended Chemo to shrink the large tumor. ( I had one large,3.5x3.5x3 CM. And one small tumor). . On August 27, I received Chemo through my groin vein, straight into the liver.
A week later all hell broke loose. The chemo "melted" the 80 % good portion of the liver, causing numerous abscess's, and internal bleeding of the liver.. I now have 1-2 months to live. I am sick and weak all the time. And I lost 50 lbs since May. Of which 23 were since Chemo. Three weeks ago.

I post this to warn others DO NOT GET CHEMO !!!!
I was working, and living a "good life" until UPMC liver cancer center talked me into Chemo. I allowed them to, based on trust. Never again. Worse, I probably would of lived at least a year until symptoms became disabling. Now my gallbladder is completely shut down. They said they cannot operate on the gallbladder.

I had stage 1 Cirrhosis since 2007. Never had an issue.

if anyone has any suggestions, I am listening.

More1234
Posts: 3
Joined: Oct 2011

Mako181,

My husband was diagonised in July of this year with primary liver cancer, we are currently going through chemo treatments now (cisplatin/genzar) and will start Sir Spheres next week. I am interested in learning about the nutritional shake you referred to in your post. I've just ordred a book "Anti-Cancer: A Way of Life" and hoping this will provide me with a lot information on nutrition. Thanks

12survive
Posts: 2
Joined: Sep 2011

Hi vazquez7,

I Just had my resection done. My profile is similar, no risk factor, stage 1. Found it when I decided to go for a in-depth health screen. Cant eat or sleep well, having nightmares. I am very afraid. Can you advise what kind of diet you are on? My doctor kept telling me I can eat everything, which I highly doubt.

12survive
Posts: 2
Joined: Sep 2011

Hi vazquez7,

I Just had my resection done. My profile is similar, no risk factor, stage 1. Found it when I decided to go for a in-depth health screen. Cant eat or sleep well, having nightmares. I am very afraid. Can you advise what kind of diet you are on? My doctor kept telling me I can eat everything, which I highly doubt.

ceeflat
Posts: 8
Joined: Dec 2010

This month makes it a year since I started on Nexavar; originally found with large (18cm)
primary HCC tumor with right portal vein thrombosis in August 2010, considered inoperable.
Well, the Nexavar has proven to be more effective than most Doctors predicted; my AFP
went from 140,000 down to less than 1 after about 9 months of treatment, and last imaging
showed tumor to be shrunk down to 5.5 x 2.5 cm, from 18 x 10.

The surgeon says that resection is an option, but I have decided to wait and see if I
can get further reduction and maybe even get down to transplantable criteria, although
the vascular invasion may preclude that.

Nexavar is no picnic, and I have suffered the whole gamut of possible side effects,
but they don't seem to last that long anymore, except for fatigue, joint pain, some
skin rashes and indigestion. As long as the results warrant it, I will stick with it.

I want to wish everyone here good luck and the strength to face the demands of this
dread disease and it's treatments...and for all the caregivers, thank you for your
selfless dedication, we could not endure such a struggle without your support.

I hope I can be here next year again, to post my joy at finding some hope in
what seemed to be a hopeless situation.
Les

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

My dads story is very similar to yours! His insurance also would not pay for the clinical trial chemo drugs. What I did was call the drug companies (there were three of them) and got them to donate the drugs, it took alot of talking and alot of being connected to this person and that but he was able to get the treatment which bought him more time! Do not let someone ever tell you NO especially when it comes to your life, what the hey these pharmaceutical companeies make billions each year so they can definatly afford to donate them!

Darryl2010
Posts: 15
Joined: Dec 2010

Sorry, didn't intend to paint a bleak picture. We are appealing the pharmacy's rejection with assistance from the case mgr. from my health insurance provider - who covers me fully for clinical trials - and that may help to change their minds. If not, we'll contact the drug mfg. to pony up for the cost (it's in their best interests anyway, to get the drug approved for another cancer type) and the MD Anderson rep. indicated that they have done so every time in the past. If those two routes fail, some time ago I applied and was accepted for aid from the Chronic Disease Fund (from the American Cancer Society) who provide money assistance to cancer patients to help with high drug co-pays. Some way, I'll get help with this.

Brings to mind something that my wife and I have discussed. In the past 16 months that we've been fighting this disease, we have discovered, over time and through various sources, charitable sources who help cancer patients with the various expenses they incur - like airfares, hotel stays and drug co-pays. You'd think that these would be compiled in a comprehensive list somewhere for all to make use of. Of course, maybe they are and I just haven't seen it!

Anyway, if anybody has any questions about the sources I've mentioned, don't be shy about asking for more info from me.

Best of luck to your dad, Sarah,
Darryl

milliew51@yahoo.com
Posts: 1
Joined: Sep 2011

hi i am soooo happy to hear your story and pray that nexavar will continue to work for you.I am writing because last year june 2010 i was dianosed with a 8cm tumor in my liver and I had a resection now a year later the cancer came back with 3 small tumors they did radition ablation (it was successful) 3 weeks later 5 more tumors came back and now has spread to my spine.the spine was treated with radition and shrunk it back.but im also on nexavar and i had my scan last thurs and will see the dr this wednesday. I love to read stories like yours cause it gives me hope. Are you following any certain diet or vitamins?
I pray that your success will continue. Thank you for sharing!

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