holly22a
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Welcome, Laura. I too am a Mom to 23, 19, and 14 year olds and have been recently diagnosed with unresectable intrahepatic CC. I know well the feelings you have that you would do anything to spare your children the loss of their mother! I am much more worried about my children than I am about me. I try to get up everyday and thank God for another transit around the sun to be alive, here, and another night with my husband. Good luck with your weight, that is important so you can fight this disease. Ind definitely get those 2nd opinions. It’s a small club, this website — lots of love here, tons of good information and advice from others who share your specific concerns. It’s been a lifesaver for sanity!
Dear Kirsten. My heart is so sad for you but I am glad you found this place to help you find solace. I am a new inoperable cc patient with children 23, 19, and 14, so I can only imagine that I am on the other side of this coin. Nobody ever imagines that they will leave before their children are fully grown and fledged and middle-aged themselves! None of us knows how long we have and it is typical that the cancer is not diagnosed until it is very advanced. Many of us are the “picture of health” until the day we are diagnosed. It is wonderful that you are spending that good time with your dad. Make every day count, savor all the moments, and you will, I guarantee, find the strength to go on yourself and to be there for your dad. Grieving never ends, we never get over our loved ones, but you do learn that life will go on and you will find many happinesses ultimately in your future. Take it slowly and always consider a counselor or some help, even, some medication in the short term. It’s a terrible, terrible blow. It’s a truly raw deal and so very unfair. And it takes a while to get used to the idea, not to reject it as just some nightmare you can wake from. I wish you strength and comfort, and I hope your Dad is feeling up to a little fight, there! He is young and strong and that helps. He’s probably more worried about you than you can imagine. I am more worried for my children than for me. I don’t know if that is true for everyone, but if you can lean on each other and talk openly and share all your hopes and dreams and worries for the future that is such a wonderful thing. You have that gift of a little time here, small comfort that it may seem now. Good luck darling and keep us posted because we all care about you.
Hello to all you wonderful loving souls! What a journey we are all on and what a joy it is to have found this site for companionship and comfort and solace and info. I am taking all your suggestions – – I have lined up two appts in NYC next week for more opinions. I already heard from two other places over the phone based on my scans that I am not a candidate for resection (I knew that) but one offered an interarterial pump protocol which sounds interesting. I already started my systemic gem/cis at Hopkins at what the nurse said was a surprisingly high dose – – almost killed me but I’m going back for the gemcitibine alone tomorrow so I must still be here. But the side effects are just unbelieveable, unending. I will keep you posted. Thank you for all your help and support.
Does anyone have any experience with living donor transplants and what the recurrence rates are? I have been told that once you have multiple tumors or a big one, you can never qualify for a transplant. I have multiple intrahepatic tumors, one over 5 cm but no nodes, nothing anywhere else. Has anyone here ever gone that route? Go ahead and tell me I am dreaming, I already know it. The world sometimes looks black except for one skinny doorway about two miles away that is open just a crack showing a little warm light. Just a crack, and you can barely see it.
My daughter is just 14. How much do you tell them about your disease? Do you all have local support groups? Are they helpful?
Welcome to the club! This is a wonderful place. Sorry you had to find us but I. too, go to Hopkins for chemo and they are SO wonderful there. They will make you feel right at home and loved. There is a lot going on in a chemo room – – interesting people, things to look at, converations to overhear, friends to make (really!) just tke it easy and take it all in. The nursese are never in a hurry so ask all your questions. I pray you have a good first experience there!
Holly22a
Got my first chemo today, the usual cis/gem but the dose is higher than anything else I have seen on this list: cisplaitin at 75 mg/m2 with gemzar at the usual 1000. Gemzar really got the vien hurting. Next time they’ll try for a bigger vien. Nurse said she has even seen the cisplaitin dosed at 100mg/m2. She says at 25 or 50, no probable hair loss but at 75 highly likely. less side effects at the lower doses, easier on your kidneys. what I really don’t want to lose is my hearing! I’m a musician!
Good luck with your adjuvant therapies. They probably don’t need to be as high and of course, they are poison. Today I felt like the Norman Invasion – – every bit of firepower that could be mustarded was thrown at those beaches and the enemy was clueless.
Keep on hoping on.
No downer, Pam! Thank you so much for writing! Info is only a good thing – it helps you make better decisions. I will let you all know when there are more opinions. I am in the middle of changing health insurances so I can go elsewhere for those after 11/4/12. BTW I hope Lauren’s tumor shrinks so she can get to the next level of treatment she wants to pursue. You and she are an inspiration to me already.
Thank you all so much. I cannot express how grateful I am to each of you and to this community. I am going to get at least 2 more opinions. I respect Dr. Choti and Hopkins but they are indeed very conservative, too much so for me, possibly. Though the cancer is completely confined to the liver and I am the picture of health, the oncologist said they ONLY used techniques like chemoembolization to keep patients comfortable if their tumors get too large. My one big tumor is only 6.7 cm and I cannot even feel it. I have no sysptoms except for appetite loss, that’s how they found this. There are a couple other tumors, one 2.2 and then under 1 cm. Just seems that there should be something more to do than systemic chemo and “making me comfortable.” If everywhere I go I get the same reaction, that’s ok, then I will know I tried everything. In non-medical terms, why can’t they seriously hit on the bigger tumor and zap the little guys and then do a transplant? I get the part about quality of life, but how many of you would choose to go for a transplant or not? Is it better to have maybe three or four years of constant chemo but some time alive or go out sooner trying for a home run? Just wondering. I am planning to get other opinions from docs who are passionate about this cancer and about trying for the miracles. Again, thank you so very much for being here, this place is a godsend. xox
Thank you all so much for your posts! In my little world full of heartbreak and bad news you are an encouraging and loving bunch! My surgeon at Hopkins is Dr. Choti. My bad news is that there is a tumor 6.7 cm and maybe three little ones, so he will not operate. They still cannot figure out exactly what cancer I have though all bets seem to be on the cc. They want another 10 days to do more pathology work and bloodwork. There is no cancer anywhere else in my body and I am in extremely good health. But the Oncologist, Dr. Azad, says there is little they can offer me besides systemic chemo. I keep reading online about all these other techniques but they do not seem to want to go there. Sorry to go on about it, I’m just frustrated. I have three children and the youngest is 14 and I am basically a single mom and I am so heartbroken. Does anyone have advice on how to stop crying?
