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Comment by Howie on March 16, 2013 at 3:31pm

Date AFP results

09/18/2012 - 111.7 ng/mL

12/03/2012 - 291.2 ng/mL

03/07/2013 - 669.6 ng/mL

I had TACE procedure performed on Tuesday, March 12, 2013 by the UCSF Interventional Radiology.

I hope my AFP number can come down under 400 ng/mL

The investigators found that individuals who had AFP levels of at least 1,000 ng/mL at diagnosis had lower survival rates than patients with lower AFP levels. Patients whose AFP levels reached 1,000 ng/mL had a 12% one-year survival rate and only a 1% five-year survival rate. These patients had an adjusted hazard ratio (HR) of mortality of 4.35 compared with HCC patients with AFP levels below 10 ng/mL. Furthermore, patients’ mortality risk grew incrementally with increasing AFP levels: mortality risk was 1.50 (95% CI, 1.22-1.83) in patients with AFP levels between 10 and 100 ng/mL and 2.23 (95% CI, 1.80-2.76) in patients with AFP levels between 100 and 1,000 ng/mL.

Howie

Comment by Howie on February 25, 2013 at 3:51pm

AJ,

It was Dr. Damanpreet Singh Bedi. He is a Fellow in transplant abdominal surgery and is the Clinical Instructor of Surgery at the school. The man is brilliant. Yes the three doctors were discussing my case and were worried about my liver disease and upcoming transplant. Then they agreed that the transplant didn't matter anymore because if I didn't have surgery ASAP I would not live to get to transplant. So as they were about to prep for surgery Dr. Bedi said let me try something. He very slowly did circles with his index finger on my belly button as even with dilaudid the pain was unbearable. After a few minutes he started pushing in and his fingers disappeared in my belly button. Then he ask if I was ready, and I braced myself as he put all his weight on that hand and then started pulling. I moved about 6' across the gurney as he pulled and freed the small intestine from the hernia. The other doctors couldn't believe it. He then have them feel the hernia and they couldn't feel the bowel. I then had a CT scan which confirmed the bowel was out. Since the blood supply had been cut off for a number of hours it took 4-5 days for my digestive system to start working again. I was NPO, then liquid diet and only stated eating food on Tuesday. The whole thing was unexpected and then to hear the doctor taking about my chance of survival being minimal was quite traumatic. If it wasn't for Dr. Bedi being there I would have had surgery and I don't want to even think about what would have happened. I am to glad to be home and able to pass food again.

I am not going anywhere on the transplant list as others are getting sicker and have MELDs in the mid to upper 30s. My MELD score will be 33 on March 9th. Then I will have TACE on the 12th. So I don't think they are going to transplant me any time soon. As previously I was in pain for a week or two and then out of sorts for about a month. I just want to get rid of the tumor and lower my AFP number before transplant.

Take care.

Howie

Comment by A.J. on February 25, 2013 at 3:10pm

Howzit Howie. Glad to hear you are doing better. What a trip. Did I understand correctly that the doctor was able to manipulate the obstruction from the outside without cutting? Was it Dr. Hirose by any chance?

I hope everything goes okay with the TACE and you clear. Have they done a MELD lately? You are so close now. Hang in there brother and keep positive. I am six weeks into treatment now with Interferon/Ribavirin and so far so good. I am hoping to start Telaprevir within the next month. Aloha, AJ

Comment by Laurel on February 25, 2013 at 2:07pm

Quite a rough road. Those pesky tumors!!!!I am going to group tomorrow. I will see you there if you can make it.Both me and Mike K are getting biopsies on March 12. Any news from you is good news. I am attending a memorial March 9 for my friend who did not make it to transplant.

Comment by Howie on February 25, 2013 at 6:34am

UPDATE

I was hospitalized with a bowel obstruction Feb 17th after going to ER with severe abdominal pain. My small intestines were completely blocked after getting twisted in my umbilical hernia which I have had for 3 years since I first had ascites. Surgery is almost always needed when the intestine is completely blocked or when the blood supply is cut off. The dead part of the intestine is removed, and the remaining part of the intestine is sewn to an opening in the skin. Stools pass out of the body through the opening and collects in a disposable colostomy bag. Not a good option for someone expecting a transplant sometime soon. A transplant surgeon was able to pull my small intestines out of the hernia using only his fingers while manipulating then from inside my belly button which prevented the need for surgery and a poor or fatal outcome due the my advanced liver disease. The good good news is the my digestive system has started working again thanks to the doctor's life-saving intervention. :-)

 

I am now on week 25 of Sofosbuvir + Ribavirin treatment. The trial was designed to be for up to 24 weeks with a transplant before reaching 24 weeks. As you know I am still awaiting transplant so Dr. Terrault was able to get an exception for me from Gilead to continue treatment until I can get a transplant.

 

I also learned last week that I have another liver cancer tumor and will need to have chemoembolization treatment (TACE) on March 12th to treat the tumor.

So my cancer is my main focus currently. 

 

After the chemoembolization and its results I will then focus on my transplant.

 

Take care.

Howie

Comment by Howie on January 12, 2013 at 7:52pm

Aloha AJ!

Thank you very much for your words of experience and wisdom.

In the last month I feel like I have lived 10 years. So many emotions. Ups and downs. I will try to keep a journal. I appreciate your insight. Yes, this will be a life changing event something I will never forget.So it is a good opportunity for my to capture myself at this turning point in my  life.

I knew of others have gone through this experience both no one a knew personally  Your words have really helped lift me up more than I can ever say. Thank you so very much! I feel a lot better now.

Much love and appreciation!

howie

Comment by A.J. on January 12, 2013 at 6:12pm

Hang in there Howie. I know how hard it is to wait once you have gotten the word that you are so close. I had that happen when I was in the hospital with a MELD of 38. They told me I was #1 on the list, but there must have been others who needed it more than I, because they pulled me through whatever had caused my MELD to rise and sent me home. The good news came just a couple weeks later and I was called back in for the tx. I know being sick makes it harder still to wait, but one day soon, you will get the call and the waiting will be over.

I might suggest one thing to help pass the time. Try to keep a journal of what you are going through in the days leading up to your tx. I wish I had, because I have a hard time remembering anything that happened during those last few weeks. For me, the transplant was a very profound experience. I can't remember that much of it, but it was almost like being born again. I know it sounds corny, but sometimes UCSF hospital seems like home to me. I hope you get over the flu soon and regain some strength. Take care and please let us know how things are going.

Aloha, AJ

Comment by Howie on January 12, 2013 at 2:52am

No,my sister isn't coming out until after my transplant.

Comment by Laurel on January 11, 2013 at 9:56pm

Oh, just the flu. I am relieved.Later with the immunosuppressants, the flu may be harder to handle.Eat some chicken soup:) Is your sister here yet?

Comment by Howie on January 11, 2013 at 8:59pm

I am ill with the flu that is going around so I couldn't have a transplant anyways. I am trying to sleep through it as much as possible. All I can take is 2000 mg of Tylenol which does nothing so I am taking it day by day. Pretty much all these things are out of my control. 

Cancer exception points MELD score never change based of symptoms or liver disease. Only time.

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