Calculating MELD score with HCC exception points

[HectorSF]

Dear Dr. Schiano,

I am confused about how many MELD HCC exception points are added every three months.
Can you explain to me how MELD score HCC exception points are calculated every 3 months?

I started with a MELD score of 22 after HCC was found during a MRI. After that 3 points were added every three months. When I reached 28 points I only receive 1 point every three months.

Could this be related to having both of my tumors downsized using Doxorubicin TACE treatments and haven't had any new tumors since March of 2012? My AFP is about 100 if that makes any difference.

It has been 17 months since I was first diagnosed with HCC. My current MELD score is 30. I will have another MRI in December and hope to add at least one point. Hopefully that will be enough to get me on some backup transplant lists. My transplant center (UCSF) usually doesn't transplant until the mid to upper 30s.

Thank you for your expertise.
Cheers!
HectorSF

[Thomas D Schiano, MD]

hector, this is the typical way that exception points are added for thr HCC variance.  this is done nationally--unfortunately in most regions of the country except CA, NY, MA people will get transplanted with lower MELD scores than this.  our patients go through the same type of waitng.  I am glad that the HCC is well treated.  good luck.

[Thomas D Schiano, MD]

dr terrault is excellent hector.  you are in very good hands

[HectorSF]

Thank you for your answer doctor. It is reassuring to know that this is the UNOS standard and that many others are managing their lives with the same issue as well. It is not a good position to be in but with advanced liver disease, I have found that many times there are no "good" options, just the best choice of the "bad" options.

I am aware that am very luckily to have such a great team of transplant doctors led by Dr. Norah Terrault at UCSF who are pulling for me and monitoring my condition closely. Should my cancer become unmanageable we have a backup plan for me to go to another center that has lower MELD score requirements, where I am also listed.

Thank you haven chosen to spend your life and career helping others who are dealing with the challenges of liver disease. I know myself and my fellow transplant patients are eternally grateful for the work that people like yourself do.

Cheers!
HectorSF