HCC long time survivors

Darryl2010

SarahD said:

darryl
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!

SarahD
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

ceeflat said:

1 year post diagnosis and start of treatment
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

ceeflat
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!

tankcar

Darryl2010 said:

Tankcar: MD Anderson surgeon
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

Darryl: Thank you
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.

More1234

Mako181 said:

June 2008
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!

Mako181,
My husband was
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