floridamom
Forum Replies Created
-
Posts
-
I was initally treated for my 6.8cm cc tumor in Aug 2008 @ Mayo Jax. A resection was performed and considered a success with 1″ clear margins. DOcs said no chemo protocol existed so they didnt recommend one. A year later the PET showed mets to the remaining rt lobe and Mayo gave me 6 months to live. At that point I left there and looked to whre my research pointed-NYC. I now receive chemo every other week after a round of Therasphere and my original six tumors are down to 6 and Mt Sinai is getting ready to give me the go ahead (next week I pray) for a live donor liver transplant. As you will hear every case IS individual and age and stage play a big role in the choices of the patient but there are always other answers if you keep looking
Staci
Jax, FLCathy,
firstly, wondering why you had 2 transplants and secondly, how diffilcult was the procedure? I am pretty sure I will be approved this coming week for my transplant at Mt Sinai (live donor liver) and find I dont worry about the peripheral stuff because being alive for my 13 and 16 yo boys is my primary goal. I have been more concerned about being “explored” immediately before the transplant is to take place and wont know if I have the procedured until I wake up.usually when CC is inoperable it usually has to do with the portal vein or hepatic artery being involved but I agree with the others that you can never have too many opinions. Myron Schwartz @ Mt Sinai is my surgical oncologist and has been know to answer even non patient questions via email. Therapies evolve all the time so never stop researching or asking different doctors. They dont all know the same things. CC is not a common cancer so make sure your oncologist has experience with it.
Staci
Jax, FLI was resected by Mayo Jax in Aug 2008 and was told I was cured and no chemo was necessary! There is no standard chemo protocol for CC and my oncologist there felt with 1″ clear margins and no other signs of CC other than the primary tumor that I could just go home and hope there was no recurrence. A year later they found 6 very small tumors on the rt lobe and labeled it metastatic. Same oncologist said I could apply for a clinical trial but essentially told me I had 6 mos to live! With my extended family in the room I stayed calm hoping no physical harm would come to this man since his words were simply unacceptable to my brood. Fast fwd to today I have had one round of Therasphere followed by a year of custom chemo cocktails. My tumor markers are in the normal range and the tumors themselves all showed signs of necrosis with all but 2 essentially dead. I admit its difficult to do chemo every other week (not to mention flying to NYC to do it) but I feel I am too young at 44 and believe I will buy enough time until there are other therapies which can totally eradicate the cancer. Meanwhile I kept searching for alternatives and have since been approved for a live liver donor transplant at Mt Sinai in NYC since there has been no growth or spread (in fact the opposite) so I am praying that I can get a donor qualified. Transplant isnt ideal but most of the newer literature has been positive so I am willing to take a chance. I believe a lot has to do with attitude and since I come from a family full of ppl who love to prove you wrong when you say we cant so I take it as a personal challenge to beat this nasty disease. Good luck in your battle!
PS Howard Bruckner the chemo oncologist has some of the best survival rates among pancreatic and CC patients-he is nothing short of genius…what they dont tell you at Mayo is they are very timid when it comes to qualifying for the transplant. They would rather resect based on a risk/reward philosphy and will not transplant after resection if there has been any recurrence or metastasis. Mayo Jax is a 10 min drive for me but I had to go to Mt Sinai (NYC) to be cleared for a live donor liver transplant. I am 44 and as a single mom with 13 and 16 yr old sons I sought the most aggressive treatment available. Currently flying to NY every other week for custom cocktails @ NY Downtown Hospital until I get a donor qualified.
Staci
Jax, FLThanks Pam! My greatest wish is that I live to see my children’s children and dance at their weddings! My grandparents were Holocaust survivors so I tell my boys that we come from survivors and a long tradition of of overcoming the odds against us. I am my father’s only child (I have a half sister) and my family is wrecked since I was always the glue at the center of it all. I have two uncle that will consent to live donation and like Kris I want to live long enough for them to discover the cure that will see me into my 80’s and beyond. I am surprised that the Mayo Jax docs were so negative but they dont see many cases of CC. Dr Schwartz from Mt Sinai saw twice as many this year so I will definitely hold onto the hope (my middle name) I was given. I am very strong willed but there is no “path” or prescription to follow for this disease. I have two friends battling breast cancer and consider them lucky that the medical community has answers for them (how twisted is that?). I aim to have a childlike faith-naive perhaps in G-d and I trust my angels (many ppl I have buried over the years) to help focus prayer and healing upon me. I want so badly to prove the docs wrong!
