Topic: new cancer patient

Hi! I am Holly, 55 years old and in perfect health, have not even hit menopause yet, low blood pressure, not a single health issue, love vegetables, etc! ...  except I have been diagnosed with primary liver cancer. They are not 100% positive about the cholangiomacarcinoma, because the AFP markers for hepatocellular carcinoma are very high also - - but no hepatitis, no chirrosis, nothing, and the pathologists are saying it's the cc or some kind of wierd blend.

I have one tumor 6.7 cm in diameter and mutiple smaller ones. The surgeon at Johns Hopkins says surgery is not an option because there are too many little tumors.

So chemo is the next option. I am so new and so scared. Like all of you, I want the hardest hitting fastest magic bullet in the world! So what is the best chemo regimen? How often do you get scans to see if the chemo is working? Why can't multiple tumors be removed? Can you freeze out little tumors while undergoing chemo?

Any advice would be most welcome and appreciated.

Re: new cancer patient

Hi,
If I were you, I will get a second opinion from an interventional radiologist from John Hopkins to see whether chemoembolization or radioembo will be an option if no mets to other parts of the body . If your HCC-CCA  ( mixed type)  tumors only confined in the liver,side effects of  chemoembo or radioembolization will be much easier to tolerate . Otherwise systemic chemotherapy recommended by your oncologist will be the logical choice.
I may disappoint you in that being a CCA patient for 40 months and continuing doing research on this cancer, there is no such thing at this moment can be referred to as " Magic bullet" for our kind of cancer.
; there is also no such thing as " the best chemo regimen" for CCA.
I donot qualify to answer The last two questions since I am not a doctor, that will be one of the questions you should ask your doctor.
For a list of regimens, please go to the experience forum on this web site, and you will find under " systemic chemotherapy in general for cholangiocarcinoma "
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new cancer patient

Dear Holly, welcome to our extraordinary family but sorry you had to find us. We know what you are feeling but once a game plan is set in to place your fright does turn to fight! I can't help with the Chemo as My Teddy had a Whipple surgery and never had chemo. I can tell you to read up as much as you can as knowledge is so valuable for fighting CC. The other suggestion is that we are big believers in 2nd and 3rd opinions as Percy wrote. It would be up to your ONC about when to have scans. Without chemo Teddy saw the ONC every 3 months at which time they did LABS. He then had a PET Scan every 6 months. Know that you have come to the best site for CC and I know you will hear more welcomes from our amazing family. You are NOT alone! Please keep us updated as we truly care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new cancer patient

Holly...welcome to our site. I am wondering:  has liver transplantation been ruled out?

Hugs,
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: new cancer patient

Hi Holly,

Welcome to this site and I am very sorry you had to find us. I don't think there are any set answers for what you have asked. It depends on the oncologist and what they feel is best for you. My daughter, Lauren gets scans every three months usually. While undergoing chemo, Lauren has had several tumors disappear. She also had a radioembolization that may have helped as well, but another tumor showed up after it as well. Everyone reacts differently to different treatments. It is up to a trained professional to decide what is best for you. I wish you all the best and if you have any other questions I would be happy to answer them from experiences with Lauren. All the best to you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new cancer patient

Hi Holly,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through right now. But I am glad that you've joined us all here as you will get so much support and help from everyone. Keep coming back here as we are all here for you and know what you are feeling right now.

Not much I can add to what the others have said to you already, but how do you feel about seeking a further opinion? I know your surgeon at Johns has ruled out surgery due to the other smaller tumours, but did he/she talk about the possibility of surgery at a later date if chemo now could deal with the smaller tumours? Just thinking out loud here and hopefully others may have some input on this.

There is nothing wrong with being scared, that is natural. But you are not alone here, we are all here for you and will help as best we can, and we care.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: new cancer patient

Did you go to to Dr. Choti at Johns Hopkins?  He's my doctor and the best. If you haven't seen him, perhaps you could make an appointment with him. I saw a different doctor first at JH, but Dr. Choti was a better fit for me and so far, it has been the right choice. I'd be happy to talk with you more. Let me know.

Re: new cancer patient

Holly,
Welcome to this amazing second family. I was diagnosed over two years ago. I have had many types of chemo, radiation and surgery. There isnt one answer for everyone, this is a tricky disease. I will pray that your specialists will come up with the best treatment plan for you. If you want to talk just let me know, I would be happy to answer any questions about my treatment.
Lisa

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: new cancer patient

Hi Holly,

Welcome to amazing support group.  I was diagonosed about 1 year ago.  I had resection with neg. margins with no node involved so they decided to do nothing at that point.  But sadly it came back about 3 month ago with a new tumor where they resected and few nodes involved.  My only option is chemo for now.  I've been on gem/cis and it helped a little.  Thankfully I had a very little side effects with chemo.  I try to get blood work every month and scan every 3 months. Sometimes, I ask for sooner if I don't feel right.  Like last scan was a after 3 cycles of chemo even they wanted to wait.  I'm not a kind of patient wait for them to tell me what to do.  I do my homework and ask lots of questions and demand things if I don't feel right. 

I read lots of post on this site and learned so much from their experiences helps me ask the right questions when I see my onc and knowing that I get so much support from everyone here. 

Stay positive and let us know how we can help.

LeeAnn

Re: new cancer patient

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?

Re: new cancer patient

Dearest Holly, PLEASE get another opinion! You are at a good place and a good ONC  but it is your right to have another opinion. We are big believers in that and no one is going to deny you the right to do that. Get copies of LABS and Tests and you can FAX them to  another ONC at another Hospital for a 2nd opinion. You might want to also ask your ONC for something very mild just to take the edge off for you. Wish I could take it all away from you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new cancer patient

Dear Holly,

I remember asking the same question about crying when my Lauren was first diagnosed. I think in a way the person with cancer and their caregivers go through something like the stages of grief.  I remember crying when I went to bed, crying when I first woke up, crying when I heard a sad song, cried when I saw a young mother with small children...just about anything made me cry because my daughter was only 25 at the time and had this terrible cancer. I did get a little better in time, but Lauren had a setback and it happened all over. That time I decided I needed help. I talked with my family doctor and was put on medication. Lauren has found it beneficial to speak with a social worker. Just know there are options that can help. You are fairly new with your diagnosis, right? It is such a major shock to your system. My heart goes out to you. We are all here to help.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new cancer patient

holly, how about running your situation by other surgeons? Dr. Fong at Sloan operates on difficult cases (he operated on my husband's CC on May 1st of this year), and particularly Dr. Kato at Columbia Presbyterian takes cases that no one else will touch. I think it's worth a try! Praying for you, and please keep us posted. Also, here's a link to Laura York's blog...it's really inspiring as she was an inoperable case and is doing great: http://thecancerassassin.blogspot.com/

Re: new cancer patient

Think 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.

Re: new cancer patient

Holly I agree with the second opinion suggestions. I think that's a very wise step for anyone first diagnosed.

Wishing you the best
Christine

Caring for my Mom and helping her win this battle.

Re: new cancer patient

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

Re: new cancer patient

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

Re: new cancer patient

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new cancer patient

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new cancer patient

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.

Re: new cancer patient

Holly,
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, Lisa

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: new cancer patient

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 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-Cathy

Re: new cancer patient

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-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: new cancer patient

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?

Re: new cancer patient

Hi 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.