Topic: Need Help

We need some help from all of you knowledgeable people.  We've got about 2 weeks before husband Charlie meets with his doctor.  In that time, we need to exhaust all possibilities for liver transplant.  What I've found so far is there a lot of places that do liver transplants, but not for CC.  Does anyone know of hospitals that do transplants for CC specifically?  What we've found so far:  UNC doesn't, Univ. PA Pittsburgh doesn't, Mayo Clinic does, but won't accept Charlie because of extent of disease.  We're researching to find all we can.  His doctor wants to make sure he asks everywhere possible about transplants before we move on to embolization or another procedure.  Any information you've found out and can share is greatly appreciated as we battle on.  Bless you all.

Carol

Re: Need Help

Carol - I certainly am not qualified to answer your question; I will only give you our experience when Mayo turned down Sam for a liver transplant.  The doctors in Birmingham thought that he might be a candidate and really got our hopes up but Mayo quickly dashed those hopes.  I think if you will research the McCrea Blog, you will also see that Valerie went to Mayo and did not get any positive news either.  I think they are really pretty truthful about the situation; CC is just a very rare and tough disease to fight.   There are some instances where a liver transplant might help but most of the time, CC will reoccur even in the new healthy liver.  At least this is what we were told.  I even asked about giving part of my liver to Sam if I were an acceptable candidate but they said that it would not do any good.  I think the chances of getting a liver even if you are a candidate is pretty dismal; the list is just too long.
I am assuming that Charlie is not a candidate for a liver resection either; that is his best option.  Wishing you the best; there are several long-term survivors on this site.
My Best
Betty

Re: Need Help

Carol...I have done research on this issuse of liver transplant and it's pretty clear cut.   Like Betty posted, basically liver transplants for cholangiocarcinoma is not an option due to the high relapse rate.  The only exception that I know is if a particular hospital is conducting a research protocol.  Even if a clinical trial is established the requirements are pretty reserved for those who are diagnosed in the early stages of the disease and that doesn't happen that often either.  Mayo in Rochester, MN turned me away years ago.  Personally, I know that radiation treatment has come a long way.  I had 3-D conformal radiation to my liver Dec.06 . It was done on my right lobe as my left was resected in the past.  I have had no growth, in others words it has been stable from then to now.  During this time I had mets to my ribs and spine bone.  It was determine those tumors were an easy target and I had radiation again and so far so good.  I wish I could pass along more uplifting suggestions. Please remmber this is just my personal experience with trying for a transplant and my use of radiation.  I wish you and Charlie the best on whatever path of treatment you decide upon.
God Bless,
Jeff G.

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

Re: Need Help

Dear Betty, I am so sorry about your husband Sam.  I know you miss him terribly.  My heart tells me a liver transplant won't happen.  Through your and Sam's experiences with CC, do you feel any procedure is better than another or did you experience any procedure that you just felt was too hard on Sam?  They said Charlie has 6 months (from 6/07) and he's on Gemzar now.  We have 2 children, ages 16 and 19.  Just like all folks battling diseases, we would give anything for him to have a few more years....I know you have already lived this.  Thank you so much.

Carol

Re: Need Help

Dear Jeff, thank you for your response and all the information.  We appreciate it so much.  Have you had any experience with or encouraging news about CyberKnife now that it's being used for procedures other than just brain tumors?  I'm so glad the radiation has worked for you so far and pray you'll continue to do well. 

Carol

Re: Need Help

Hi Carol.... I was not given the opportunity of using cyber knife as there seems to be a criteria on the size of the tumor.  Now this is what I have been told, that it is used primarily for brain and neck tumors or tumors 2cmx2cm or smaller.  I was told that it would take forever to radiate anything larger and would expose me to more radiation than allowable.  Thats why they went 3-d conformal IMRT.  They are able to widen and narrow the beam and encompass the entire tumor without affecting good tissuse.  You have got me wondering now.  I'll have to do some more calling and research on this matter as it may be an additional option for me in some tumor areas.  Thanks for mentioning it.  It may be a local thing going on here. 
God Bless,
Jeff G.

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

Re: Need Help

Hi Betty, I'm sorry for being so insensitive in my previous post and asking very personal things.  Please just ignore.  I get so caught up in researching....

All my best,
Carol

Re: Need Help

Carol - don't ever apologize on this site for asking anything from anybody that might help.  That is why we are here.  Sam did have 28 days of radiation to the liver and then radio frequency ablation.  He lived a total of 23 months; he died a year ago today.  You can read his history under johnsonal.blogspot.com.  I would also suggest that you read the McCrea blog, the Clements blog and the Stouffer blog.  Those
contain some very valuable and detailed information that might help.  Hang in there and do not give up.  We are all here when you need us.
Betty

Re: Need Help

Hi - I'm just curious as to where the family blogs are located?? I looked through them months ago and now I don't know where to find them. - Joyce

10 (edited by marions Sat, 11 Aug 2007 01:11:21)

Re: Need Help

Hello Joyce,

to find the blogs:   click on Wiki on top of page.  You will see Family Blogs on bottom. right hand side.

Goood Luck
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: Need Help

Hi Carol,
I am mary Anne Coburn and we also have a a blog for Joe my husband.  He wa diagnose a year ago with tage 4 intrahepatic and we have taken a different route.  we went on a vegan diet right away and have stuck to that.  Joe opted for no cehmo becasue he didn't want to be sick for what time he had left.  He changed his mind when we heard about IPT which is Insulin Potentiation Therapy.  It is alternative medicine  and only uses about 10% of the normal dose of chemo.  He did three months of this in Arizona (not covered by Medicare  which is our insurance) and his tumors have reduced in size.  He also had ablation done on the 5 cm one in his liver (the most active ) and that is gone.  He now has no symptoms after having a queezy stomach since Sept. of 05.  He will have another CT scan the end of this month.  He is now getting IPT every other week so we are hoping this will hold it at bay. We found someone in IL that does it so we don't have to travel.  Mainline oncologists don't recognize this treatment but it is working for us.  Everyone has to find their own path and I thought I would just tell you what ours has been.  Hope it is helpful.  He is also on a lot of sulpplements and as long as I set them up he takes them just fine.   Keep reading  this site and we will all help each other to get through this.  God Bless  Mary Anne

Re: Need Help

My understanding about a liver transplant for CC (and I can only speak about the kind of CC I have) is that CC is a bile duct cancer, and not primary to the liver -- where it shows up and where it metastasized back to after my liver resection (one side removed) in May 2001.  I've been told if I had a liver transplant, the cancer could easily spread back to the new liver from the bile ducts.

Again, this is only my non-professional opinion and possibly only for my situation -- but it made sense to me.

Re: Need Help

Betty, I did go through the family blogs as you suggested.  They are full of good info. like you said.  My heart goes out to you and your family on the loss of such a fine man as Sam.  Charlie and I aren't giving up.  Thank you.

Carol

Re: Need Help

Thanks so much to all who have shared experiences and responded to my questions.  It is definitely looking like liver transplant is not an option.  We'll be discussing other avenues the end of Aug. with oncologist.  I've been doing some research on Theraspheres and Dr. Andrew Kennedy in Cary, NC (2 hours from where we live).  Some of that sounds promising.  For now, Charlie has good and bad days and is still maintaining pretty well on once a week Gemzar chemo....continuing to pray for God's healing hand and for all those touched by CC.

Carol

Re: Need Help

I think I'd like to add a bit to JerryD's explanation.  I believe that intrahepatic cholangio is considered primary liver cancer.  Regardless, what the previous posters have mentioned about surgery is unfortunately the case for the majority of CC patients.  You really have to catch it early to be a candidate for transplant.

30-something caregiver

Re: Need Help

Hi Carol,  As a couple who have been within inches of a transplant at Mayo, let me just add my experience.  My husband was listed for transplant and went through the entire protocol at Mayo.  We were there for months on and off.  He was removed from the transplant list when the final step in the long process revealed that the cancer had spread to a lymph node.

When the liver transplant happens, it is necessary to take immunosuppresive drugs to avoid rejection.  These meds are less with the liver than other organs, but they are still used in rather large amounts initially.  This suppression of the immune system will cause cancer to spread rapidly, if it has gone beyond the inital site which will be removed.

I hope that makes some sense.  It was a painful reality for us being so close.  So, while I was ready to give up part of my liver, it wouldn't have done any good, and may have further spread the disease.

Pam