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446474 tn?1446347682

After 48 weeks of Sofosbuvir + Ribavirin Relapse

I got a call from my hepatologist tonight notifying me that my HCV has returned one month after stopping 48 weeks of Gilead's Sofosbuvir + Ribavirin treatment.

I was 1 of 50 of the first cirrhotics to treat using this therapy.
"An Open-Label Study to Explore the Clinical Efficacy of Sofosbuvir With Ribavirin Administered Pre-Transplant in Preventing Hepatitis C Virus (HCV) Recurrence Post-Transplant"

I was undetectable by week two. Continued to be undetectable for 47 weeks.
I am genotype 1
IL28B C/C
Advanced cirrhosis and untreatable liver cancer.

My hepatologist asked Gilead if we could get more Sofosbuvir to get me undetectable before transplant preventing my new liver from becoming infected with the virus. Our request was denied due to safety concerns because no one has ever treated beyond 48 weeks with this drug combo. Oh well we tried. Nothing else can be done now. It is what it is.

I am disappointed but not upset or anything. I gave it my best shot and was grateful to be in such a important trial. I knew it was a gamble from the beginning. The treatment was easy to do with minimal side effects so I can do it standing on my head if I have to again after transplant.

My focus now is on my liver cancer. I have to get that under control soon and get a transplant to stay alive. All else is trivial. If I can beat this cancer, I can beat hep C with new treatments.

On to cancer treatment #5 with CyberKnife radiation treatment for untreatable tumors. I will be the first patient at my transplant center to have this treatment for liver cancer. Depending on how my treatment goes the transplant center is thinking of adding this treatment as an option for others in the future with HCC. I am happy to be a pioneer if I can help others with their HCC.

Life goes on with or with HCC. Hep C doesn't define who I am or how I want to live. I have lived with it for over 40 years with it a few more months will make little difference.

Cheers!
Hector
45 Responses
2114467 tn?1358210256
Wow, I don't know what to say other than you amaze me with your fighting spirit and your ability to stay upbeat. I will continue to think of you daily and hope you can get the HCC under control, so you can get the transplant.

Who you are, is INSPiRATION!!!!!!!!
Cheers for now and sweet dreams kid,
C
Avatar universal
Yes I am sure you are disappointed, it's a shame you was not able to have the TP while you were und the outcome might have been far different. As it is you followed the same footsteps as prior non responders. What you did do was made it quite clear without one having a TP that even  48 weeks with that combo is not going to work. So once again you have carried the load for others.

Now your mission is the CyberKnife radiation treatment, yeah your in a fight for your life and willing to give it your all to beat this, but at the same time you are single handling providing the medical world with so much valuable information and I must say doing it with much more grace then most would be able to.

Howie I keep thinking something good for you is going to happen, keep the faith guy......... Best always
Avatar universal
You are the strongest and most resilient person!  It's disappointing that the treatment didn't work this time, but you're right that the main goal is to be eligible and able to get the transplant.  I know that you have a huge number of more important things to deal with right now, but know that I, and I'm sure a large number of other people , check this site every day to see if there's any news of you.  If you would, please ,please, keep us updated on what's happening with your journey.  Here with you all the way.
Avatar universal
I agree with can-do, I just know something good for you is going to happen.
I am praying for you my friend and always here for you, no matter what.
Avatar universal
I love your style Hector and I also believe that you're going to beat this thing and be well.

Good luck,
Mike
4670047 tn?1375730401
I agree with can-do also! Keep truckin, as I know you will. Best to you!

Kitty
4113881 tn?1415850276
Your an amazing person....fighting this thing with so much class. Wishing you success with the cyber knife treatment.
163305 tn?1333668571
Damn !
You are dealing with this amazingly well but I am majorly pissssed off !!!

You know my heart and thoughts are with you, wishing you only the very best.
huge bear hugs,
OH
5720485 tn?1373563055
Agreeing with can- do.  You are a pioneer for us. . . And handling such dissapoinment with clarity and grace, that I'm sure I would never be able to do like you have.

I wish you only success with your CyberKnife treatments as you continue to pioneer on.  As I watch for your new news Hector I also keep you in my prayers.
Shyrl
Avatar universal
  I will be praying for that Cyberknife to wipe your cancer right out, and then on, to your Liver Transplant.  Because of your amazing capacity to think clearly, and put up a terrific fight, you can do this!
5536514 tn?1373500002
I may not understand all the medical talk, but what I do know that since I have met you,  I am a lot stronger than I thought I would be.  You are still in the ring, so keep those boxing gloves on, because you are a winner in my book. You are loved by many.  I will be praying everday for you.  Blue
3159077 tn?1356031131
I'm still praying for good results for you. You continue to inspire and teach us with your attitude. Have you ever read "Tuesdays with Morrie?" I think that's the name of the book by Mitch Albom. Your attitude reminds me of Morrie's and it's inspiring.
789911 tn?1368636783
yes can-do said it all.  Hector stay in the battle! please keep Walking by faith and not by sight!  We are here for you and you are so loved : )
4950316 tn?1394184585

Man, when you muscle up, you really muscle up!
What you do for me? You level me out. Create a perspective for me to look at my illness, and others, in a calmer and more objective light.
Continue that struggle against the pricks.
4705307 tn?1447970322
Your strength and courage have been an inspiration for me.
Tim
446474 tn?1446347682
Thank you so much everyone!!!  -`ღ´-
I am taking it one day at a time and trying not to worry about what might happen tomorrow.

Since this is the social community and we don't have to speak of hep C per se, here is the info about the CyberKnife radiation cancer treatment I will have this month for anyone interested. My wish is that no one here or anywhere has to have this treatment in the first place.
-------------------------------------------------------------------------------------------------------
CyberKnife

Procedure:
Radiosurgery minimizes radiation exposure to healthy tissue surrounding the tumor. Compared to other radiosurgical treatments, the CyberKnife offers several advantages to patients, including rapid relief from pain and other symptoms.

Treatments are performed on an outpatient basis, with each treatment lasting between 30 to 90 minutes. The number of treatments vary depending on the tumor size, location and shape but typically only one to five daily sessions are required. The CyberKnife allows patients to lie comfortably on the procedure table without anesthesia while the robotic arm moves, without touching them, to treat all areas of the tumor.

How Does the CyberKnife System Treat Liver Cancer?

Treating liver cancer with radiation therapy is a challenge because liver tumors move with respiration.  In addition the tissue surrounding the liver tumors is very sensitive and can be damaged easily.  The CyberKnife Radiosurgery System is able to deliver very high doses of radiation to both primary and metastatic liver tumors with extreme accuracy. Working in conjunction with the CyberKnife System is the Synchrony® Respiratory Tracking System, which enables the radiation beam to track tumor movement in real time and allows patients to breathe normally during their treatment sessions. With the CyberKnife System, doctors can zero in on a moving target – the liver tumor – and irradiate it without harming the healthy surrounding tissue. As a result, the CyberKnife treatment is more comfortable for patients, radiation is delivered more accurately and treatments can be completed in one to five sessions.

The CyberKnife treatment generally involves four steps:

1. Fiducial placement
2. Set-up and imaging
3. Treatment planning
4. CyberKnife treatment

During the first step, the patient is scheduled for a short outpatient procedure in which three to six fiducials – tiny gold seeds each about the size of a grain of rice – are inserted into and around the liver tumor using CT guidance, ultrasound or via a camera that is passed through the mouth into the stomach and small intestine. The CyberKnife System uses those fiducial markers as reference points to identify the exact location of the tumor during treatment. Once fiducials are implanted, the patient must wait approximately one week before CyberKnife treatment planning can begin to ensure that fiducial movement has stabilized.

During set-up and imaging, the patient will be fitted for a custom body cradle, which is designed to help keep him or her more comfortable and ensures consistent positioning for both imaging and treatment. The patient also will be fitted with a special Synchrony vest, which is worn during CyberKnife treatment and enables the robot to correlate chest motion and breathing patterns with the tumor position. The data generated with the vest allows the CyberKnife robot to precisely follow the tumor’s motion as it delivers each beam of radiation, ensuring safe and accurate radiation delivery.

While wearing the vest and positioned in the cradle, the patient then will undergo a series of CT imaging studies, which will enable the CyberKnife team to determine the exact size, shape and location of the tumor. An MRI or PET-CT scan also may be necessary to fully visualize the tumor, liver and nearby anatomy. Once the imaging is done, the Synchrony vest and body cradle will be stored for use during CyberKnife treatment.

Next a treatment plan will be specifically designed by a medical physicist in conjunction with the patient’s doctors. The patient does not need to be present at this time. During treatment planning, the imaging data is downloaded into the CyberKnife System’s software. The medical team determines the size of the area being targeted by radiation and the radiation dosage, as well as identifying critical structures where radiation should be minimized. Each patient’s unique treatment plan will take full advantage of the CyberKnife System’s extreme maneuverability, allowing for a safe and accurate liver cancer treatment.

After a treatment plan is developed, the patient returns to the CyberKnife center for treatment. Doctors may choose to deliver the liver cancer treatment in one session, or stage it over several days. Liver cancer treatments are typically completed within one week.

For most patients, the CyberKnife treatment is a completely pain-free experience. Patients dress comfortably in their own clothes and, depending on the treatment center, they may be allowed to bring music to listen to during the treatment. Patients also may want to bring something to read while they wait, and have a friend or family member with them to provide support before and after treatment.

When it is time for treatment, the patient will be asked to put on their Synchrony vest and lie on their custom body cradle. The radiation therapist will ensure the vest is properly adjusted and that the patient is positioned correctly on the treatment couch.

As treatment begins, the location of the liver tumor will be tracked and detected continually as the patient breathes normally. The medical team will be watching every step of the way as the CyberKnife System tracks the patient’s liver tumor as it moves, and safely and precisely delivers radiation to it.

The CyberKnife System’s computer-controlled robot will move around the patient’s body to various locations from which it will deliver radiation. At each position, the robot will stop. Then, special software will determine precisely where the radiation should be delivered by correlating the location of the tumor using digital images of the fiducials and information from the Synchrony vest. The CyberKnife’s robotic arm will adjust the radiation source automatically, to follow the liver tumor as it moves. Nothing will be required of the patient during treatment, except to relax and lie as still as possible.


Video
http://www.youtube.com/watch?v=kUgJJq5hPw4&list=PLA04918438C646AE4&index=1

Howie
Avatar universal
  That sounds amazingly accurate. I am visualizing you being comfortable and cradled, listenin' to some relaxing tunes, while the exact correct dosage of radiation does it's job zapping your HCC into permanent non-existence.
    
Avatar universal
Hector, I am so sorry to hear that you have relapsed.  As you know, of course, your HCC and your transplant are the top priorities.  It's too bad that the virus is back, but you can try again to get rid of it after your transplant.  You've got your priorities right.  Hang in there, my friend.  
Advocate1955
2136167 tn?1374728651
You are very special person Hector,inspiring us and giving us all strenght to go on and fight. Wishing you the best outcome  !!
Avatar universal
Hang in there Hector  We are all always pulling for you.
Avatar universal
Hi Hector i am so sorry that the last lot of tx failed i was hoping and praying for you where you get your strength from is beyond me but i wish you all the best with the cyberknife, you are in my thoughts lots of love Jules x
446474 tn?1446347682
Thank you all for your warm comments. It means a lot to me.

I have been approved for treatment and am now waiting for the schedule for when all the procedures will be performed. The treatment will occur over 3 1/2 weeks. I am hoping to get this started as soon as possible.

Grateful
Howie
4670047 tn?1375730401
That's great news!!! :):):)!!!
2059648 tn?1439766665
Good Luck!  Your on my mind often.  
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