Topic: Violarob in Texas: one-year update

Howdy to all: Allow me to share my story with you. It may be helpful to those who pass through this web site. I will try to pack the maximum information in minimum space, so forgive me if the style seems austere, spartan or unfeeling.

ME: 50-year-old white single male, with 20+ years of chronic hepatitis B infection (since 1988) and 10 years of cirrhosis caused by hep B (since 1999).

2003: diagnosed with gastric varices. Began treatment with Hepsera (adefovir) to suppress hep B. Treatment successful, virus completely suppressed for 5 years.

2003-2008: Screened every 6 months with ultrasound and MRI to watch for liver cancer and/or worsening of cirrhosis.

January 2008: ultrasound shows possible small lesions. MRI also shows possible small lesions. Number and size of lesions difficult to visualize on scans, biopsy ordered. Biopsy confirms malignant cells, but pathologist unable to distinguish whether it is HCC or cholangiocarcinoma.

February 2008: TACE procedure (transarterial chemoembolization) performed with doxorubicin. During the procedure, 7 lesions were visualized, 2 of them being 2 cm in diameter, and 5 of them being 0.5 cm or less in diameter. Only the largest lesion was treated with doxorubicin. Diagnosis was changed to multifocal HCC. I was deemed to not be a candidate for liver transplantation, or resection or radiofrequency ablation, due to the extent of the existing cirrhosis and the multifocal nature of the cancer. I was advised to seek consultation with a liver cancer specialist.

March 2008: I was accepted as a patient at MD Anderson cancer center. MDA pathology determined that my cancer was neither HCC nor cholangiocarcinoma, but a very rare mixed cancer which is a combination of the two types. (It is usually called "mixed cholangiohepatocellular carcinoma"). It was determined that the chemoembolization did stabilize the one tumor that was treated. MDA also agreed that I was not a candidate for resection or radiofrequency ablation. I was started on a chemotherapy regimen of Gemzar (gemcitabine), and cisplatin infusion given once every 3 weeks. (the usual regimen is to infuse once a week or once every 2 weeks, but my platelet count would only tolerate once every 3 weeks). In addition, I was prescribed Tarceva (erlotinib) pill, 150 mg taken once a day.

April 2008: I launched on an intensive program to educate myself about this rare cancer and cholangiocarcinoma in general as well, and also to investigate all the dietary, supplemental and alternative treatments available. I scoured the internet daily for information. The most valuable resource I found was a book called "Beating Cancer with Nutrition" by Patrick Quillan. So, in addition to the formal chemotherapy I was receiving at MD Anderson, I created my own regimen consisting of low-sugar diet guided by the glycemic index chart of food values. Daily supplements included selenium, alpha lipoic acid, milk thistle, CoQ10, resveratrol, rice tocotrienols, red yeast rice. Celebrex (a COX-2 inhibitor) was added to my drug regimen at my request as a chemotherapy potentiator. I also practiced home hyperthermia 24 hours after each chemotherapy treatment by immersion in a jacuzzi for 45 minutes until my temperature rose to 102 degrees. I also took a coffee enema 4 days after each chemo treatment to clean out all the dead cells and toxic chemicals from my intestinal tract. Information on all the above can be found easily on the internet via Google search.

June 2008: After 4 rounds of chemotherapy, CT scan revealed that all lesions had decreased in size. The smallest lesions were now almost too small to be seen on scan (the radiologist described them as "tiny"). I was very lucky with my chemotherapy regimen; I did not ever have nausea or vomiting. I did not suffer from fatigue and did not lose my hair. I had good appetite and good energy. I went to the gym and swam every day. I continued the Gemzar, cisplatin and Tarceva throughout the summer and early autumn.

October 2008: The 5 smaller lesions are now barely visible on CT scan. It is hoped that these lesions are now just residual scar tissue and are no longer active. I am now considered a candidate for radiofrequency ablation to treat the remaining 2 lesions which had started at 2 cm each and are now down to about 1.5 cm each. Chemotherapy is discontinued in preparation for surgery.

November 2008: Radiofrequency ablation surgery done at MD Anderson by Dr. Steven Curley, the man who invented the procedure. 100% ablation of both lesions was achieved. Intraoperative ultrasound did not reveal any other active lesions.

December 2008: Post-surgical follow up. It is decided to do at least 6 months of "clean-up" chemotherapy with only Gemzar to be infused every 2 weeks. Tarceva pill might be added again at a later date, depending on my progress. Follow-up scans will be done in February and May. I am cautioned that although I am cancer-free for now, this type of cancer tends to come back, even after successful resection or ablation. It is hoped that the "clean-up" chemo will greatly retard the possibility of recurrence. They expect that I can have several years of good health and good liver function, at which time there should be even better treatments available when/if I should need them. I plan to continue my home regimen of supplements indefinitely.

To all those who have been freshly diagnosed, remember this: When I was first diagnosed a year ago, I was given only a 20% chance of living for another year. Here it is, a year later, and I am happy, healthy and cancer-free for now. I don't know how long it will last, but it is a great feeling! So, my advice is to fight like hell, don't give up hope and do everything you can to help your doctors help you! Good luck, and bless all of you on this web site who have been so helpful to me this past year.

Violarob in Texas

Re: Violarob in Texas: one-year update

WOW!  What a story! Good for you and this is the kind of news we love to hear. Another Christmas Miracle! Although one you worked extremely hard at. Question: Our son-in-law has Hepatitis C. Can that also beget CC?  2nd question: Do you play the Viola?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by JeffG Sat, 20 Dec 2008 13:03:38)

Re: Violarob in Texas: one-year update

Violarob in Texas...  Glad to to hear your excellent come back.  I wish I could say the same.  Still taking Tarceva dispite the warnings as I feel it is doing me some good.  Just got to stop all of these darn ribs from fracturing.  Hurts just a little .Takes about three days of liquid morhine to kill the pain. I still remain hopeful this cancer feeding frenzy will stop.  I'm doing a chest wrap to help with pain and hopefully allow healing we'll see. Who knows for sure what coarse will be steered.  Wish you the best.
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Violarob in Texas: one-year update

Vilarob....."cancer free" is the magic word we are looking for. Thank you for sharing with us and allowing us to see first-hand that diligence and the pure act of being pro-active can bring about these incredible changes.  I am hoping for you to continue to share with us. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Violarob in Texas: one-year update

Violarob,

Congratulations!! A wonderful story, thank you for sharing it!!!! I wish you a long cancer free life!!

The coffee enemas have been extremely helpful to my mom as well...

Best to you,

L

Re: Violarob in Texas: one-year update

Lainy wrote:

WOW!  What a story! Good for you and this is the kind of news we love to hear. Another Christmas Miracle! Although one you worked extremely hard at. Question: Our son-in-law has Hepatitis C. Can that also beget CC?  2nd question: Do you play the Viola?

Dear Lainy: Yes, hepatitis C is know to cause several types of liver cancer, especially in the presence of cirrhosis. There are plenty of web sites which discuss this link. Try doing a search at www.medscape.com

And yes, I do play the viola! I am in the orchestra at the Wortham Theater Center in Houston, TX, where I perform for Houston Ballet and Houston Grand Opera.

Re: Violarob in Texas: one-year update

JeffG wrote:

Violarob in Texas...  Glad to to hear your excellent come back.  I wish I could say the same.  Still taking Tarceva dispite the warnings as I feel it is doing me some good.  Just got to stop all of these darn ribs from fracturing.  Hurts just a little .Takes about three days of liquid morhine to kill the pain. I still remain hopeful this cancer feeding frenzy will stop.  I'm doing a chest wrap to help with pain and hopefully allow healing we'll see. Who knows for sure what coarse will be steered.  Wish you the best.
Jeff

Dear Jeff: Tarceva takes time to work. If it is not making you sick or feel bad, stick with it and see if you can reap some benefit from it. I hope you get relief soon from your rib pain. Bless you, you have been a big inspiration to me this past year in all my struggles!

Re: Violarob in Texas: one-year update

marions wrote:

Vilarob....."cancer free" is the magic word we are looking for. Thank you for sharing with us and allowing us to see first-hand that diligence and the pure act of being pro-active can bring about these incredible changes.  I am hoping for you to continue to share with us. 
Marion

Hi, Marion!

Well, "cancer-free" is kind of misleading I suppose. As most of you know, cholangio and its cousins have a way of coming back even after successful resections. However, the use of drugs like gemcitabine, erlotinib (Tarceva) and bevacizumab (Avastin) has shown that you can greatly reduce and delay the return of disease after resection or radiofrequency ablation by many months, or even years. I will be the living guinea pig!  I will keep you guys posted on my progress. I promise to stay in touch; it is the sharing of information which helps us all so much.

Violarob

Re: Violarob in Texas: one-year update

Good morning. I asked about the Viola as my grandson  who is 14 has been playing for 4 years now and is quite good. He is in his school orchestra and he loves it.
On the return of Cc we know that the only thing for certain is the fact that it will return. Lovely, yes? But we keep hoping for new treatments such as the cyber knife my husband just had and are ever grateful for people like you who are able to take the "new stuff"! Good luck and keep us posted. Also, thank-you for giving the music that brings the world such joy!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Violarob in Texas: one-year update

Vilarob....you are so very right...."delay" is our hope and "cured" is our goal, and stories such as yours are our inspiration. 
Thanks so much.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Violarob in Texas: one-year update

violarob, can you please explain your supplements of selenium, alpha lipoic acid, milk thistle, CoQ10, resveratrol, rice tocotrienols, and red yeast rice?
What exactly is each intended to do, and how much per day do you take?
Thanks so much,
Saracita

Re: Violarob in Texas: one-year update

Newest update:

Not the greatest news. I had CT scans done in May, 2009. Scans showed 2-3 new lesions, but rather small, about 1.5 cm each. TUMOR MARKERS: AFP went from 0 up to 111; CA19-9 went from 26 up to 65. My onco at MD Anderson, Dr. Javle, said not to panic. Easy for him to say! I was really getting comfortable in my remission, and it was a shock to get back into "fighting mode". Last month I started a new chemo regimen of gemcitabine + cisplatin + Avastin (bevacizumab) IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day.

When I went through chemo last year, I was very lucky; no side effects at all. This time around is a bit rougher. A little fatigue and low-grade fever the week of infusion, but not too bad. It is getting better as time goes on. Fourth of July weekend I went swimming and kayaking, with normal energy and appetite. Yay!

Dr. Javle thinks he can get control of the lesions since he caught them very early and very small. There are still no metastases outside the liver. We won't know for sure until August, when I have my next scans done. He is concerned that maybe I am getting too much chemo and suggested cutting one or even two of the drugs. I told him "no way!", that I want to continue hitting the cancer as hard as possible while I am strong. We will discuss it again next week

If we can get control of the lesions (i.e. no growth over a 3-month period) then he is talking about some kind of targeted therapy: Chemoembolization, or radiospheres, or maybe RF ablation again. He is making no promises or definite plans for targeted therapy. He says first things first, get control of the lesions.

Well, that's about it for my long-winded update. Not good news, but not terrible either. I am feeling good, doing all my normal activities. Lesions are small, and no mets outside the liver. I am now 19 months after my initial diagnosis. Everyone keep your fingers crossed for me!

Violarob in Texas

Re: Violarob in Texas: one-year update

Vilarob....of course, fingers and toes are crossed.  Your attitude is infectious and that combined with the attack of the early recurrence has all the makings of positive responses.  This cancer reminds me of a wildfire.  Flairups are common.
Best of all wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Violarob in Texas: one-year update

And I am also crossing my eyes! It really sounds like you have a wonderful and aggressive doctor and with your fighting spirit and hope, you have a winning combination.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.