You need to be a member of TransplantFriends.com to add comments!
This reply was deleted.
Facebook & instagram
TransplantBuddies & Friends Facebook Group
Transplant Stories
COTA
Lung Transplant Foundation
Cystic Fibrosis.com
Latest Activity
Forum Style
Replies
Hi denise. Greg here I hope everything is fine. I just joined a couple weeks ago and saw your post Just wondering how you are doing.
Hi Denise- I hope things are going well for you at this time. I had to read John's (from Texas) post twice because it sounded like I wrote it! I had very similar facts. The key is to follow through with the cancer treatment so you can qualify to be placed on the list and then receive the 'cancer exception points'. I too started out with a MELD of 6 but when the chemoembolization treatments worked (two rounds two months apart) reducing the size of my tumors to less than 3 cm's, I received the cancer points which bumped my MELD to 22. I received the transplant the day after the MELD bump. I significantly depends on what region you are in geographically and what hospital you go to as well as your blood type. I was lucky to be in a good region (Ohio) and going to a great hospital (Cleveland Clinic) and had a less common blood type (B+). Although it is very scary to have a diagnosis of liver cancer, it can be a good thing in that you are generally less sick than other transplant patients. However, you must pray that you can the transplant during the window of time that the tumors are reduced before they come back as that can bump you off the list. Thanks for sharing your concerns as it helps us all to feel more connected to each other. May God bless you and keep us posted!
HI Denise, my story is the same as you have from Mark and John, I was first diagnosed with HCC in nov of 07, and was put on the transplant list in January of 08, went through the testing as Mark described and received my extra points as time went by . had two Chembo Tace during that time. issue was I had three small nodules which they could not be certain were HCC, but best medical judgement said they were. they could not biopsy them as size and location were prohibitive. In my case NY has such a high demand for livers that they were not transplanting before meld reached low 30's , my liver functions were were pretty good so the regular meld was low like yours,
During this whole time my daughter was commited to donating her liver, which I was against as she was only 20, As time went on I did develop Ascities and adema's finally in July.the fluid became infected with a virus and I was confined to the hospital for two weeks on antibiotics. In danger of the HCC growing beyond acceptable transplant levels. I agreed to allow my wonderful brave daughter donate.we were transplanted 8/05/08. Pathology did reveal it was cancer and had invaded the blood stream. she recovered quickly and lives a normal life.although she doesn't care for herself as I would like she is a difiant 26 year old now.
I have been cancer free for the past 5 years and just had an MRI to confirm it!. I went through 2 years of treatment for HEPC and am now undetectable as well for the past 2 years! There were some complications post transplant, an orphaned duct which eventually closed and some infections etc. but nothing in the past three years. so life is good.I must say it seems like quite the ordeal when told in this compressed manner, but taking day by day it was never overwhelming in fact I never really felt all that ill.
I hope my story helpsv
A live downer at this stage of my HCV is not an option for me. I'm overwhelmed right now to make the right decision. I spent a week in the hospital last year with infection from ascites, massive IV antibiotics and have had two parsentices, I have pain fatigue. Thanks for your reply and for telling me your story. Its good to have others to vent to that are or have been going through the same thing. Thanks
I had all that , the infection ascites , antibiotics, paracentesis several times. just take it day by day, you'll get through it. what state are you in?
Hi Denise
I was diagnosed with HCV in 1987 and went through all the normal stages including, varacies with many banding's , blood transfusions , cirrhosis, acites, and finally in 2012 diagnosed with HCC. I underwent chemo imbilization and was placed on the transplant list at score of 22, my pre chemo score was just 6. Everyone seems to have a diffrent story about MELD score. I was told my score was completely based on the Cancer and every three months it would increase buy 3 points, but if my Cancer exceeded 5 cm in size total aggregate I was off the list. I was on the list for three months and received and organ on my second call 3 months after being placed on list, so it was about 5 months total from time of Cancer detection to transplant.
It's very important that you start treatment ASAP so you can get on list, they would not put me on list until they treated my Cancer and scanned me for a second time, every three months you must be re-scanned to stay on list. I started with a single tumor and they stopped it's growth with chemo imbilization but at three months I had a small second tumor. Total size for both was about 3.5 cm at time of transplant.
Everything can make a difference, I'm B+ and in my region this played out in my favor.
Your story sounds allot like mine. Right now I'm 2 points till transplant stage here when you reach 15 on your MELD score you get on transplant stage. I will know next week about options for treating the cancer. Thanks for sharing your experience it has helped!
Okay, here is what I know. First, your Meld score is calculated based on your blood levels of bilirubin, serum creatinine and INR (link to calculator is below). A diagnosis of HCC does not automatically change the Meld score. Exception points are added after each stage of treatment. In my case, the treatment was Transcatheter Arterial Chemoembolization or TACE which is performed in the radiology dept and usually requires an overnight in the hospital. The need for subsequent procedure is based (roughly) on quarterly MRI scans. This is how my case played out:
Initial Meld score = 15
TACE #1 points + 3
TACE #2 points + 3
TACE #3 points + 3
TACE #4 points + 3
TACE #5 points + 3
Final Meld score = 30+ (after 14 months)
Naturally, every case is going to be unique and the patient's general health is an important factor in the decision to use TACE or any other cancer treatment. One important thing to remember about HCC - tumor dimensions are classified using what is called Milan Criteria (see link below). Dimensions that are outside these criteria will severely impact the eligibility of a liver transplant candidate, so it is vitally important to seek treatment asap. In other words, a liver transplant will not be approved unless the spread of the cancer is under control.
This is a very abbreviated version of a 14 month period in which my life teetered on the edge and many issues other than the HCC were addressed. I was transplanted in July, 2011. Quarterly scans over the past 2 years have detected zero presence of the HCC. I have a few (common) post transplant complications, but in general I feel great and thankful each day for the grace of my donor and the skills of the transplant team at Houston Methodist. I am very happy to converse with you further on any question(s) you might have. Good luck and bless the road that will carry you through this.
UNOS/OPTN Meld Calculator: http://optn.transplant.hrsa.gov/resources/MeldPeldCalculator.asp?in...
Milan Criteria: http://en.wikipedia.org/wiki/Milan_criteria
Thanks for the info, I have the MELD score calculator and am going to do more research about the Milan Criteria. You've been a great help! I'm trying to be brave for I don't want my family to be scared but it gets hard to put on that brave face! Thanks again!
In the face of a looming battle it is normal to be a little scared. Use the energy generated by that fear to fight the fight. There are many HCC survivors walking around today :)
-
1
-
2
of 2 Next