what's next when you hear transplant is no longer an optoin?

marriedblnde

I'm not sure what I am asking for, all I know is that my husband an I are at a loss. My husband was diagnosed Mar '05 with Stage II primary liver cancer. We sought opinions from a number of doctors including UCSF regarding cutting it out. Due to the location, on the top of the dome and down through the center looking like a carrot, and with some scaring from HEP C, surgery to remove was not an option. He was however a candidate for a transplant.
In May '05, my husband AFP (alpha feto protien test) was at 3400. So he underwent Chemo embylization. He responded very well to the chemo. By July his AFP was at 16. We went through all of the required hoops to complete all the tests and he was placed on the list with a meld score of 22 as of Nov '05. Gradually, that AFP was climbing, 900 in Nov and 3000 in Jan '06. They scheduled a Quad scan which they said showed nothing new. They suggested a MRI for more detail. My husband had that MRI last week. We were called in an informed that there are now 9 new tumores surrounding the original tumor. With this being the case, he is no longer a successful candidate for a transplant.
We are beside ourselves. We feel that they are tossing him to the side. They have not seen any sign of spreading. So how can they just seal his fate??
We are in search of options.

We know that the chemo, radiation, are not cures.
We are searching for information on transplants in other areas of the country an even other countries. I am a potential live donor for my husband.
Is there a place that doesn't look at the Babe Ruth senario ?

Any information or suggestions would be appreciated.

MarriedBlnde[color=blue][/color]
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Thank you
MarriedBlnde

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

I am sure that you could find a place to perform a liver transplant, but I would be sure that this is the best option for you situation. Have you seeked a 2nd opinion regarding this from another institution. My concern is that if you spend most of your time, energy, and money on a procedure that may not be the best option, the outcome will be undesired. Another center in another country may be willing to provide the transplant, but be sure that they are a qualified medical center with adequate experience and are not just after economic desires. Also, a black market does exist for organs, but I'm sure you are aware of the risks as well as the ethical issues.

May I suggest at least a 2nd opinion at another institution. If you are at UCSF, a very good institution, try MD Anderson or Memorial Sloan Kettering. I would also consider exploring clinical trials, especially systemic therapies, as they are more likely to address the cancer in the liver and elsewhere.

RLee, MD
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RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

marriedblnde

Thank you for your advice..I appreciate the insight. We have talked to our Dr. at UCSF regarding our decision and he seem to agree. Even though there is about, I believe he said a 90% chance of reacurrence, if he were in our shoes he would do the same thing.

So we are off to Shanghai, to meek with the surgeon and see the facility. We have some akward feelings about doing this in a foreign country. But meeting and speaking with patients that have been through this, is very reassuring.

We will keep you posted on my husbands progress.
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Thank you
MarriedBlnde

marriedblnde · Posted: Thu Mar 16, 2006 11:44 am Post subject: Liver Transplant abroad

Well after being in Shanghai for 2 weeks. I am proud to say my husband was able to do what American doctors told him he couldn't. He has had a successful liver transplant.

With still no sign of spread, prior to the transplant. We will return to the states in about 3 weeks, and my husband will undergo preventative Chemo.

I am glad that neither my husband nor myself were narrow minded, to the point of dismissing all possible options. I now have a husband still with me, whom I love dearly. My 5 year old son and my 3 year old daughter still have a father's lap to sit in.

Americans are clueless when is comes other coutries' capabilities. Either that, or we choose to be ignorant, and would rather believe that the US is only the best. Well we are all quite mistaken. Everyday life here is very simple here in China, an in many ways they are more advance than us.

If there is one thing that I have realized. Is that the medical in the states, spends more time consulting each other on treatments than, treating the patient.

I hope this helps those people that have been told, your tumor is to large and we have to yank you off the transplant list. That is not the end. It never is. Doctors can not take away your life. You make that decision!!

The criteria for a transplant whether set by UNOS or by the various Transplant Centers accross the states. Is not set to be favorable or designed for Cancer infected patients. So if you think for one minute that the odds of being successful in waiting for a cadavor organ, think again.

My husband was in the race against time due to his cancer. We reallized that cancer has a head start in this race. So rather than continuing down the same path, where cancer was so far in front it was not in sight. We were able to find a shortcut, on our own. So at least now, we are leading the race!!

If anyone would like information or has questions. I would be happy to share our journey with you
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Thank you
MarriedBlnde

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

Please keep us updated on your husband's condition, as I'm interested to know how he does. Thanks and best wishes.

Sincerely,
RLee, MD
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

cjago · Regular Joined: 14 Jan 2006 Posts: 42

Me too - I'm following your blog (rlee, see below) - best of luck!

http://newfilter.blogspot.com/
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adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

jasmin9777 · New User Joined: 10 Apr 2006 Posts: 2

can you please let me know where you got your resources to go to China. My mother has been diagnosed with HCC and they just told us that they can not do a liver transplant because of U.S. regulations. The doctor said that going out of the country would not be out of the question but wouldn't give us much information about that. My mother is young, 47 and has an excellent overall health. There is no doubt in my mind that she would not be a good candidate for this surgary.
You may e-mail me at jasmin7777@netzero.net

Thank You

angiesscripts · New User Joined: 18 Apr 2006 Posts: 1

Marriedblnde can you please send me information on where you went in Shanghai to receive your husbands liver. My father is needing a transplant, but with years of waiting involved, I'm looking for other options. Can you please give me your Dr's name as well as facility you went to along with any other valuable information I would really appreciate it. Thank you for your help. Angies_scripts@hotmail.com

Still Keeping Faith · Regular Joined: 15 Jan 2007 Posts: 14 Location: California

Hi,

I'm new to the forum, but I completely agree with you that the physicians and the medical care here is more concerned with consultations with treatment and one another than with treating the patient. I can attest to having firsthand experience of that and even though it's been a very difficult process all the way around, I'm (or should I say we're) still very hopeful that something can be done for my father.

He was recently diagnosed with liver cancer in early November. He has a very large tumor on his right liver and we were initially told that surgery was not an option (after being referred to UCLA), but that was reconsidered and everything we've done has been toward that goal. He's completed a liver biopsy (of the left side) that ruled out cirrhosis and recently completed an embolization procedure to help increase the size of the left liver. He's due to have a CT scan later on this month to see how big the liver has grown and it's up to the surgeon to determine if the size is sufficient to proceed with surgery. It's been extremely difficult having to deal with my dad's diagnosis, having to deal with doctors, consultations, insurance, and especially with the endless waiting. However, one thing I will say is that it helps to have a positive outlook and to look for signs of divine intervention whenever possible because I have to believe that that has been the case with my father's situation. Aside from the frustration of dealing with the healthcare system and bureaucracy, he has been blessed with some good and compassionate doctors who are supposed to be the best in their field.

It certainly does help to know that there are a number of people in similar circumstances and there is a resource like this to relate to. Your story was very inspiring and hopeful. We hope we don't have to resort to the option you had to go to, but if all else fails, we'll cross that bridge later on if need be. Meanwhile, we continue with prayers for the best outcome for my father.

Still Keeping Faith
California

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