new cancer patient
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Wow, Holly, when you do something you do it in big style. I don’t recall anyone with your specific situation, but if there is you can bet they will show up soon. Sounds like a good choice on your change of Hospitals. HOPE is the key word here and you never know what is just around the corner. Best of luck and as usual, please keep us posted. Wishing you the best!
Small update: I have been making the rounds of getting those second and third (and fourth..) opinions and learning as much as I possibly can. I am moving my health team up to Columbia Presbyterian in NYC. Have had two rounds of gem/cis, one to go, then scans, then hopefully moving over to y-90 beads in hopes of being able to take out half the liver. That’s the hope, always the hope. I have one 6 cm, two 2 cm and a dozen little tumors throughout the liver (though no nodes) so I am definitely “behind the 8-ball” as they say. I also do not have a usual intrahepetic cc but a “collision” tumor with mixed properties of both cc and hepatocelluar. I think they call it cHCC-CC. Pretty rare, I gather, and probably originated in a liver stem cell. That’s why it does not act like cc – – the blood work indicates HCC and the pathology says CC. So it is anybody’s guess how things will behave. I know the prognosis is actually worse, but that may be because most are caught so late…not sure. My question is, is there anybody else out there on these forums with this? If so, what has been your experience with treatments? I am hoping to find others like me, Thanks!!
Holly,
We have two sons, Jake is 21 and Noah is 15. We have been very open with them because at first I did not give them much info. about my cancer and they were hearing things from other parents and social media…besides researching it on the Internet. so we decided we wanted to be the first to tell them what was going on. My best support comes from this site and other ladies I meet with for lunch that have CC. I was told I am not eligible for a transplant because I had metastisis in the liver. It doesn’t make sense that if the cancer is only in the liver why can’t they take the liver out and replace it. I have read a lot about the immune suppressant drugs you take for transplants and that can spread cancer elsewhere in your body if you have cancerous cells in your body. I just pray my doctors make the best choices and I really trust them.
LisaHi Holly, can’t help on the ‘scientific’ stuff but would just like to say that my own belief on discussing things with children is that the more they know the more they can accept. Children are very smart and very resiliant and I just think the more things are talked about the easier it becomes for the kids to understand and ask questions about concerns they may be having. Most of the support groups are for Cancer in general as CC is so rare it is hard to put a group together just for CC. I tried with Mayo Clinic here and they said we would have to join a group that covers all cancers. The best for now is perhaps to find people near to you and just meet up with each other like Pam, Lauren, Lisa and Kris did.
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?
Hi Holly,
Let me add my welcome to all the others here and like all of them I am sorry you had a need to find this site, but I know you will find many many supportive and informative people here like I did.
I was diagnosed in 12/2009 and had surgery and chemo. I have had a few bumps, but mostly clean scans since then. I am due for a scan in a few weeks.
I got a 2nd, 3rd and 4th opinion at various points in my journey and like most here I am a big subscriber to the more eyes on you the better.
Wishing the best for you,
-Randi-Holly-Welcome and sorry you had to find us! I am a CC survivor 3 years cancer free!!! I am alive due to 2 transplants (yes 2, not a typo!!), please read my story at http://www.catherinedunnagan.com, it is full of HOPE!!
My miracle worker was Dr. William Chapman (google him it is very impressive) at Barnes-Jewish in St. Louis MO. Dr. Chapman is one of the most amazing doctors, so full of heart and tops in CC treatment. One of the main criteria for a transplant is that there is no lympnode involvement and it hasn’t spread. Transplant is still not on all doctors list of treatments but it is one the cure for CC, so please make sure it is ruled out by a doctor who believes it is an option, many doctors don’t. Please call (618-567-3247) or email jrdunnagan@gmail.com if I can help. Holly, on July 31, 2008 I was told I had 6-8 months to live and I was only 52 years old, thanks to God, 2 strangers and Dr. William Chapman I will be celebrating my 58th birthday in a couple of weeks, 5 more birthdays since that day!!
Lots of prayers and HOPE-CathyHolly,
You will know when you find the right specialist. I totally agree with several opinions, the more aggressive the better…..my tumor was 6 cm x 8 cm and I was blessed to have a very skilled liver surgeon that removed e entire tumor, his name is Dr. John Fung at the Cleveland Clinic, he is brilliant.
Hugs, LisaNo 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.
Hi Holly. I will tell you what my daughter, Lauren’s surgeon said about a transplant. She has a large tumor in one side and small ones in the other side of her liver. He said that if she had a transplant and there was the tiniest bit of cancer cells left that the anti rejection drugs you must take will react like gas to a flame and spread the cancer. Lauren has swollen lymph nodes but they don’t light up on a PET scan as being cancerous. You have to go through a ton of tests to be considered for transplant. Tiffany on this site has just gone through them and passed and is on the list for one. Also, Cathy is the survivor of transplant on this site. Lauren is unresectable at this time but her doctors are trying so hard for her to be able to have one. There is no guarantee with resection that it won’t come back either. I would find a doctor that is aggressive and really knows about CC. When you find the right doctor, you will just know. I wish you all the best. I hope I don’t come across as a Debbie Downer. These are just the facts I have been told about CC. But I will never give up hope for Lauren and everyone on this site. Take care.
Love, -Pam
Dear Holly, I had heard you were a very aggressive lady! Just kidding, but I am so relieved to hear you are getting more opinions. I believe that 2nd and 3rd opinions are so important as you never know how someone else will view things AND for peace of mind. I will be watching yhour posts with interest and with many good wishes. You knock that ball out of the park!
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
Holly,
Welcome to the site and sorry you had to join us. Many people on this site get second opinions. I got three opinions on my treatment.
Best of luck with chemo and keep us posted!-Susie
Holly I agree with the second opinion suggestions. I think that’s a very wise step for anyone first diagnosed.
Wishing you the best
ChristineThink of MD Anderson Hospital in Texas for a 2nd opinion..or St. Louis. Those are the ones (and Dr. Kato) that I’ve read about with fantastic results. Since I know Dr. Choti as my own surgeon, he tends to be a bit conservative. He feels that one needs to seek the best quality of life, at least that’s what I’ve gained from him. and not spend the last days living miserably with chemo’s side effects. Surgery is the only option for a cure. He has told us many times, that chemo is not a cure, but can hold the cancer at bay for awhile. I hope you get a second opinion. I’ve read of very successful treatments here on this website that otherwise might be considered not possible somewhere else.
(I still cry and it’s been over 2 years…I’ve had a terrible rash since I had a hernia repair last week and they felt it was getting systemic and they feared that it could get into the mesh of the hernia repair. The itching became unbearable and I finally went to the ER where I got prednisone intravenously. Today the dermatologist I went to told me it was on the surface, not inside. I surprised even myself by crying ((and that was at good news). The strain and fear and the great unknown take a toll, but there is a bright side and life is good even under these circumstances. Keep coming to this discussion board as the best, most loving people are here and you will get tremendous support. Good luck and keep us posted if you get second opinion.
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