CSN Login
Members Online: 10

cholangiocarcinoma

ianryan
Posts: 4
Joined: Mar 2004

Hi
I just got diagnosed with choangiocarcinoma. It was inoperable due to a lymph node metastasis, and the tumor had attached to the portal vein.
The options that I have are radiation and chemotherapy, which starts in three weeks.
If anyone has any information in this type of a cancer I would appreciate it.
Anne

markl
Posts: 2
Joined: Apr 2004

Hi Ann,
My wife has cholangio with mets. She is receiving chemo - Gemzar (gemcitabine) I.V. and Xeloda (5-fu) oral - two weeks on, one week off. Her cancer has responded to the chemo, tumor reduction has been 30%.

If you send an e-mail to me at mark_l_slaughter@yahoo.com - I will put you in touch with her (I'll give you our phone number, etc.)

Cholangio is rare but you are not alone - reach out.

Mark

Faith22
Posts: 5
Joined: Jun 2004

Hi Markl,
I am glad to hear that your wife's cancer is responding to the chemo. My Dad was recently diagnosed with cholangiocarcinoma (May 25, 2004). He is just beginning the battle. He has an appointment for a second opinion in regards to treatment on July 6, 2004 at the Medical College of Virginia (MCV). We were beginning to feel alone due to the fact that cholangio is so rare - reading your e-mail - "you are not alone - reach out" has helped me realize that we are not alone. How is your wife doing? Do you have any advise for my Dad? My thoughts and prayers are with you and your family.

andreaC
Posts: 1
Joined: Jun 2004

My husband has had primary sclerosing colangitis for 6 years and has been healthy until about 6 weeks ago.He was having painfrom his gallbladder after many tests they took his gallbladder out on 6-23 and found metstatic cholangiocarcinoma.Were going to MT Sinai next thursday for a consult on treatment...I'd love to hear something positive right now..Andrea

dmeyer9
Posts: 3
Joined: Jun 2004

Hello Anne,
First I want to let you know how sorry I am that you are facing this. My thoughts/prayers are with you. My husband was just diagnosed on May 20th with stage IV cholangiocarcinoma. They found it because his gall bladder had become infected and they had to remove it. When they performed surgery, they found the cancer and said it was also inoperable. They are going to start him on Xeloda/capecitabine for two weeks with one week off and then for two weeks again. At the end of that time, they will then review the tumor to see if the capecitabine has had an effect on it. They also recommended gemcitabine, but can't use it yet because his bilirubin is at 4.6 and it has to be 1.5. They put in stents about a week and a half ago to try to reduce the bilirubin counts, and he is also taking actigal (ursodial) to make the bile less viscous. How is your treatment going?
Cherish and David

dmeyer9
Posts: 3
Joined: Jun 2004

Hello all,
My name is Cherish, and last year my 42 husband was diagnosed with stage IV cholangiocarcinoma. He passed away 4 months later. I am writing you to let you know about the types of treatment/pallliative care that we undertook for David, because I believe that for those of you that find this disease early enough, some of this infomation may be of help. I am not a doctor. I am not a professional researcher. I am not recommending any of these options. I am just passing along my experience and my unprofessional opinion.

There is another posting in this site that I wrote that describes the chemo (Xeloda) and other drugs Actigal (ursodial) to make the bile less viscous) and Celebrex (it has been suggested that Celebrex helps with this type of cancer) that we used, so please look for that infomation if you are interested. We also had plastic stents placed two times to help with the drainage. The stents seemed to be a moderate help -- mostly for comfort. These were done at the University of Colorado Health Sciences.

The final method we undertook was Photodynamic Therapy (PDT) at the Mayo Clinic in Rochester. I read a finding by Dr. Maria Anna Ortner in Switzerland that discussed her success rates with PDT for late stage Cholangiocarcinoma and wrote to her for information. (Successful photodynamic therapy for nonresectable cholangiocarcinoma: a randomized prospective study. Ortner ME, Caca K, Berr F, Liebetruth J, Mansmann U, Huster D, Voderholzer W, Schachschal G, Mossner J, Lochs H.) Since it was not reasonable to go to Switzerland for the treatment, Dr. Ortner gave me the following contact information for physicians that are performing the treatment in the US. (Dr. Michell Depot from Axcan knows all doctors performing this treatment. mdepot@AXCAN.com).

When I contacted them, they suggested that the Mayo could perform the treatment, and we went to see Dr. Pete deGroen (hepatologist http://www.mayoclinic.org/gi-rst/10032835.html) and Dr. Wang (the doctor that would administer the PDT http://www.mayoclinic.org/gi-rst/10031251.html) for this procedure.

While the studies indicated it was a good choice for us, the procedure was very difficult. One of the requirements is that you must remain out of ALL natural light (sunlight and bright incandescent lights included) for 30 days. We had to seal our home windows with landscapers plastic to keep out the light. We also had to change all of our lightbulbs. And of course, he had to be totally covered when we flew back from the Mayo.

The hope was that the PDT would help stop the growth of the cancer and get it to shrink so that the chemo could work. I do believe that there are instances where, if found early enough, the PDT would help someone. Ultimately our goal was to get the cancer to go away so he could get on a donor list. We also found out that he had PSC (primary schlerosing cholangitis)so a liver transplant was the only solution -- but we were told we only get that was if the cancer was gone.

I hope that with more research there will be better ways to find this disease before it reaches terminal stage and that there will be better treatment/palliative options. I offer you all my solidarity through this and I hope that good care can be discovered.

I can be reached at cherish_meyer@hotmail.com and I am willing to share any information that I have found.

Faith22
Posts: 5
Joined: Jun 2004

Hi Anne,
My thoughts and prayers go out to you and your family. My Dad was recently diagnosed with cholangiocarcinoma (May 25, 2004). His tumor is about the size of a grapefruit. They have not officially staged his cancer yet, but I do know that the tumor has also attached to the portal vein and his lymph nodes are also inlarged. His tumor is also inoperable. He has a difficult time eating and has some good days and some bad days. We have REALLY had a difficult time finding a doctor to give him a second opinion. The oncologist where we live wants to treat the liver cancer as colon cancer (even though it did not start as colon cancer and he does not have colon cancer now). This may be the thing to do, but Dad still wants a second opinion. We finally have an appointment at the Medical College of Virginia (MCV) in Richmond, Virginia, on July 6th, for a second opinion regarding treatment. As we learn more, I will send any information to you. How are your treatments going? Do you have any information or advise? I will put you at the top of my prayer list. I know that this is difficult. Just wanted you to know that although this is a rare cancer you are not alone.

lilhill
Posts: 4
Joined: Jun 2004

My step-father was just diagnosed w/ Cholangiocarcinoma and is preparing to start radiation & chemo. Just wondering how your treatment is going. Thoughts & prayers are with you!

Rubala
Posts: 1
Joined: Jul 2004

Hi Lil:

My mom was just diagnosed with cholangiocarinoma. She too is preparing to start both chemo and radiation treatment. She starts on 7/7. The are inserting a porta-cath in her chest for the chemo. The chemo will be attached to her with a fanny pack and will be administered slowly into her system everyday. Radiation will be everyday for 6 weeks. I am still shocked and very upset as is my dad and other siblings. I pray this works for your step-father and my mom.
Ruby

4myfather
Posts: 2
Joined: Jul 2004

It is with great sorrow that I find what we share in common is a bad cancer. My father was diagnosed with inoperable stage IV cholangiocarcinoma last week. It was an emotional rollercoaster for our entire family last week. But we are no longer upset and are ready to fight this thing.

Does anyone have any reports on chemos or alternative treatments that shows positive results?

They say that chemo and radiation doesn't work. Any experiences that prooves otherwise?

Anybody had experience with IPT? RobbinsEgg had a post on that earlier.

Anyone tried Haelan951? I ordered a small supply for my Dad to try out. I'll report on that. We also got some chinese herbal mix from this Dr. from China. I'll report on that as well.

I'm encouraged to know that we are not fighting this alone. I hope that by sharing information we can help ourselves. The doctors don't seem to have any clear answers for us.

thursdayfix
Posts: 2
Joined: Jul 2004

Hi there. I also have stage IV cholangiocarcinoma. I'm 41 years old and was diagnosed last September, shortly after having a baby. We are still devastated. But we're fighting. I have several tumors in my liver and it's spread to my abdomen, lymph nodes and lungs. The doctor said I have anywhere from 6 months to 3 or 4 years to live.

I've been on Gemzar and Xeloda since October but it's starting to fail so they are switching me to a clinical trial that includes some standard chemo along with an antiangiogenesis (sp?) drug. The chemo is Oxaliplatin, Lucovorin, 5fu and the new drug is called VegF Trap. Supposedly it traps the cells that feed the tumors and the tumors starve. I hope it works.

I've felt so alone and I can't tell you how much it meant to me to see this thread and know that I'm not alone. I would appreciate any email or posts from others with this condition. My email is thursdayfix@hotmail.com

marathon328
Posts: 1
Joined: Aug 2004

Hi, I have cholangiocarcinoma also along with Primary Scelerosing Cholangitis. I just completed radiation a few weeks ago and they have been trying to give me chemo, but I've only been able to take 1/2 doses and 1/2 the time they can't give it to me due to my low white cell and red blood counts. Hopefully your liver is in better shape then mine and you can better tolerate the chemo. I was turned down for a transplant for the PSC (only cure) due to the finding of cancer also in my lymph node just like you. Good luck to both of us. I'm considering stopping the chemo, because even if my cancer is cured (which is highly unlikely)my liver disease will kill me. I'm not giving up, but I want what time I have left to feel as good as possible.

AllisonBroox
Posts: 1
Joined: Sep 2004

Hi I'm Allison. I'm 24 years old and was just diagnosed in June w/ cholangiocarcinoma. My tumor is a little bigger than a grapefruit inside the right half of my liver. Since my tumor is so big, my doctors at UCLA have told me that it's too big for surgery or radiation. I've been doing chemo since mid-June. I was on Gemsar and Cisplatin first. Unfortunately, there were no changes in the scans after 7 weeks w/ that combo. I'm now on a different type of chemo called Folfox 6 where I take the chemo home w/ me and have it administered through a port-a-cath for 46 hours. Right now I feel fine for the most part and the side effects from the chemo haven't been too bad. I know this is a serious disease though and that time really is of the essence, so if anyone has tried any combo of drugs that has had positive results for shrinking this kind of tumor, please let me know!! Thank you:)

AuthorUnknown
Posts: 1564
Joined: May 2006

I hope you read my previous post. If I can be of any help please post. Keep your hope up. Let me know if you want my email aadress. Take care!

AuthorUnknown
Posts: 1564
Joined: May 2006

My previos post was directed to Allison Broox.

ianryan
Posts: 4
Joined: Mar 2004

Hi Tach7
I had a liver transplant July 10th at Mayo Jacksonville, Florida. I got diagnosed in Rochester, but had to go to Florida for transplant. I'm glad to hear that all is going well for you. I haven't met another cholangio tranplant patient, I would enjoy hearing from you. All is going well for me at this point.
Take care.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Anne

I am glad to hear that you had liver transplant and all is well for you now.

My apetite returned right away after surgery. I felt rather chilly in the evening for about a year. At the 4 month checkup, they felt I was doing quite well and didn't need liver biopsy. I have been taking only Prograf and physically active. I had flu shot last year and plan to have it yearly. I just completed the series of Hepatitis A&B shots. My CA 19-9 was undetectable at one year checkup and I hope it remains that way.

When were you dignosed? Why did you go to Mayo Jacksonville, Florida instead of Rochester, MN? What lymph node was involved? I was depressed and quite worried when they told me that mine was inoperable. I realized later on that the term "inoperable" was not an exclusion for liver transplant as long as the metastasis was not out of the liver and biliary tree. I believe that by this time you are already back home. I hope that your recovery is uneventful.

I know some patients out there with cholangiocarcinoma may not realize that they are candidates for liver transplant. There is hope. I met one patient who had liver transplant in 1984 for this disease.

ianryan
Posts: 4
Joined: Mar 2004

Hi Tach7,
Yes my recovery was uneventful, I was quite a boring case as the surgical resident said, I like boring. I was in hospital 5 days, and spent 21 days in Jacksonville post-op. My pre-eval was 4 weeks, then 3 1/2 weeks on the list. I got a domino liver.
The worst part of post-op was the nausea after release from hospital, lasted 4 days. I get some side-effects from the drugs, leg cramps, insomnia, but nothing that stops me from getting on with my life.
The transplant was quite a turn of events for me , Rochester would not consider me for transplant because of the positive lymph node near the bile duct, Jacksonville were not as worried. I was diagnosed March 3rd. They did a laparotomy for a suspected stricture, but found the cancer. I was inoperable, and like you given a year to live.
I go back to Jacksonville November for my four month.
Was your CA19-9 very elevated? Mine was high normal.
Good talking
Anne

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi Anne

Yes my CA19-9 was higher than normal.

Good luck

prrhaus
Posts: 1
Joined: Oct 2004

Hi ianryan,

First of all my thoughts and prayers are with you and your family. My mom just passed away on 9-23-04 of cholangiocarcinoma. UCLA told her there was nothing for them to do and discharged after being in the hospital off & on. Her insurance ran out so they pretty much shut the door in her face. They had given us hope of radiation and chemo but unfortunately that never happened. She was diagnosed 8-17-04. They said the only thing they could offer was an ERCP and hospice care. 2 ERCP's were performed and with the 2nd she caught an infection and we had to rush her to the ER. She was in the hospital for about 7 days. The final day we took her home and the next morning she passed away. She was glad to be home. Even though she couldn't speak anymore she still had all her senses. She smiled when I told her she was home and I treasure that smile so much.
I'm glad to know you aren't giving up and that you keep trying. Don't let those doctors tell you otherwise. Keep your head up and confidence.
God Bless,
Trish

baldnblonde
Posts: 1
Joined: Mar 2005

Hi ianryan,

I hope that you might still be looking at this site. My husband was diagnosed with cholangiocarcinoma in November. It has been a whirlwind but am very curious about your transplant. He will be listed as of next week. Can you tell be what a 'domino liver' is? Is this why you were only on the list for 3 weeks? We have already discussed with doctors at UCLA that he should accept a 'less than perfect liver'. We understand his overall score will be low. I would love to hear more about your experience.

My thoughts are with you and your family and happy to hear you are on the road to recovery!

Tina

dmeyer9
Posts: 3
Joined: Jun 2004

Hello Tina and all,
My name is Cherish, and last year my 42 husband was diagnosed with stage IV cholangiocarcinoma. He passed away 4 months later. I am writing you to let you know about the types of treatment/pallliative care that we undertook for David, because I believe that for those of you that find this disease early enough, some of this infomation may be of help. I am not a doctor. I am not a professional researcher. I am not recommending any of these options. I am just passing along my experience and my unprofessional opinion.

There is another posting in this site that I wrote that describes the chemo (Xeloda) and other drugs Actigal (ursodial) to make the bile less viscous) and Celebrex (it has been suggested that Celebrex helps with this type of cancer) that we used, so please look for that infomation if you are interested. We also had plastic stents placed two times to help with the drainage. The stents seemed to be a moderate help -- mostly for comfort. These were done at the University of Colorado Health Sciences.

The final method we undertook was Photodynamic Therapy (PDT) at the Mayo Clinic in Rochester. I read a finding by Dr. Maria Anna Ortner in Switzerland that discussed her success rates with PDT for late stage Cholangiocarcinoma and wrote to her for information. (Successful photodynamic therapy for nonresectable cholangiocarcinoma: a randomized prospective study. Ortner ME, Caca K, Berr F, Liebetruth J, Mansmann U, Huster D, Voderholzer W, Schachschal G, Mossner J, Lochs H.) Since it was not reasonable to go to Switzerland for the treatment, Dr. Ortner gave me the following contact information for physicians that are performing the treatment in the US. (Dr. Michell Depot from Axcan knows all doctors performing this treatment. mdepot@AXCAN.com).

When I contacted them, they suggested that the Mayo could perform the treatment, and we went to see Dr. Pete deGroen (hepatologist http://www.mayoclinic.org/gi-rst/10032835.html) and Dr. Wang (the doctor that would administer the PDT http://www.mayoclinic.org/gi-rst/10031251.html) for this procedure.

While the studies indicated it was a good choice for us, the procedure was very difficult. One of the requirements is that you must remain out of ALL natural light (sunlight and bright incandescent lights included) for 30 days. We had to seal our home windows with landscapers plastic to keep out the light. We also had to change all of our lightbulbs. And of course, he had to be totally covered when we flew back from the Mayo.

The hope was that the PDT would help stop the growth of the cancer and get it to shrink so that the chemo could work. I do believe that there are instances where, if found early enough, the PDT would help someone. Ultimately our goal was to get the cancer to go away so he could get on a donor list. We also found out that he had PSC (primary schlerosing cholangitis)so a liver transplant was the only solution -- but we were told we only get that was if the cancer was gone.

I hope that with more research there will be better ways to find this disease before it reaches terminal stage and that there will be better treatment/palliative options. I offer you all my solidarity through this and I hope that good care can be discovered.

I can be reached at cherish_meyer@hotmail.com and I am willing to share any information that I have found.

thomast
Posts: 5
Joined: Jun 2005

Hi all,

My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.

Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.

I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.

My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.

Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.

After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.

By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.

The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.

My wife spent 20 days in USC and was discharged and returned to Arizona.

Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.

It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.

She periodically receives scans to monitor her condition.

I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.

Stevesbrother
Posts: 1
Joined: Jul 2006

It seems all of us have been touched by this horrible disease in one way or another. I am a liver donor. My brother, who would be 44 years old this year, was diagnosed with PSC at 21. He battled it for a long many years before an ERCP test revealed cancer cells in his liver in March of 2000 where the PSC had turned into Cholangio. This was the ugly turn that we all had been waiting for everyday since his diagnosis in 1982. He was seen at Northwestern Hospital in Chicago which one one of the cutting edge Liver Transplantation centers in the country. He wasn't sick enough for a Donor Liver and if he waited, the disease would kill him before a liver was available. Northwestern was in it's infancy of Living donor liver transplantaion at this time, but it was made available to us in June of 2000. We were the fifth Living donor liver case at the time and they are in the 100's now. I donated to my brother when he was 38 and I was 33. This was the ONLY option or let him die. We did the transplant and it was a success. I gave him 60% of my liver which was 100% regenerated in a little over a month's time. He survived another two wonderful years. Unfortunately, the cancer cells that were detected prior to surgery had laid dormant in his body and came back two years later right back to the liver. Living donor transplant is a way to go for alot of people that cannot be cured or get a cadavor liver. It is an extention of life and a real shot at making it and it was our only hope and option. His young children got to know him two years longer and chances are they would have not remebered him at all if the transplant wasn't possible. For those of you searching for way to beat this horrible disease, try Northwestern in Chicago. Since my brother's case, they now pre-treat PSC/Cholangio patients with chemo and radiation prior to surgery to try and kill these cells so there is no recurrent cholangiocarcinoma after transplant. With all of the immuno suppressive drugs that the recipient has to take post transplant, there is nothing to fight the cancer if it comes back so they are taking these measure to treat patients prior to transplant, with great success. I have had no complications as a living donor and would do it again if I had to. I hope this info is of some help to all who need it and god bless you all who are sick, I have a special place in my heart and prayers for all of you. Brian (Stevesbrother)

clkempf
Posts: 5
Joined: Mar 2010

You give me hope!

Hanabanana
Posts: 2
Joined: Apr 2010

It's 2010 and I don't know how things are with you and yours. I do hope well.

I'm just starting to observe, worry and pray for my son diognosed with Liver Cancer and what all else. We will know the rest on Thurs. I'm seeking hope and as a Mother I need others with a similar situation to talk to. Can you help?
Hanabanana

sybilwithpms
Posts: 2
Joined: Jun 2010

Am so happy to hear about successful treatment/outcome!!! FANTASTIC!

clkempf
Posts: 5
Joined: Mar 2010

I was given less then 6 months to live. But with Prayers, attitude and the Mayo Clinic I am still here and healthy! My advise to you is to start a prayer chain at your church,then smile and call the Mayo Clinic and get in asap! I have had several treatments at the Mayo and go for chemo locally. But I am here! I get to see my Grandchildren grown, and isn't that what life is all about?? I am only 53.

zack1
Posts: 11
Joined: Mar 2010

I am so sorry about your cancer. My husband and I, our church, family, friends are all praying for us and that is all we know to do. My husband Doug was diagnoised with hepatacellular carcinoma in November 09. He is not eligible for liver transplant because he has to many tumors and size in liver. We are hurting so bad. The Dr's say 3-6 months. Because my husband also has Hep c and cirrhosis he doen't have enough healthy tissue left in the liver for any aggressive chemo other than the nexavar he is taking. He is 55 and my soulmate.
I'm like a little child begging for help but no help comes. All we can do is be thankful for our faith in God and read our healing scriptures daily. God Bless you.
Diana

zack1
Posts: 11
Joined: Mar 2010

I am so sorry about your cancer. My husband and I, our church, family, friends are all praying for us and that is all we know to do. My husband Doug was diagnoised with hepatacellular carcinoma in November 09. He is not eligible for liver transplant because he has to many tumors and size in liver. We are hurting so bad. The Dr's say 3-6 months. Because my husband also has Hep c and cirrhosis he doen't have enough healthy tissue left in the liver for any aggressive chemo other than the nexavar he is taking. He is 55 and my soulmate.
I'm like a little child begging for help but no help comes. All we can do is be thankful for our faith in God and read our healing scriptures daily. God Bless you.
Diana

rowena32
Posts: 18
Joined: Dec 2009

Zack l, and elkempf, we can not give up and prayer is very powerful. I was diagnosed last July, '09 and given 6mos. by a couple of doctors. A couple of other doctors told me that even though this cancer can not be cured, everyone is different, so they said there is no time period. So, I say, let's fight it and keep praying. I have friends praying for me and prayer groups (people I have never met) all praying for me. My cancer is in the bile duct along with a few small tumors and one large one that is blocking one side of my liver.
I have had chemo and radiation and that seemed to stop the growing for a couple of months but the last two months, my CA-19-9 tests have gone "sky-high". If it has not come down in two weeks, when I will have another blood test, I will start chemo, again. I am going to keep praying and fighting as I am sure you are doing, too. Are you on a special diet and are you taking supplements?
Rowena32

clkempf
Posts: 5
Joined: Mar 2010

Hi .. I am so happy to see any one posting on my questions etc....I feel so lost and alone with this cancer. I have been searching site after site to get some feedback of people who are going through the same things... I was diagnoised last September, given less then 6 months at that time. Have been going to Rochester Mayo for treatments. Had a Sir_Sphere, and 2 chemoembloizations, both with good results! I take chemo cispolatin and gemzar 4xs a month. Now, I have started injections of Neulasta to strengthen my WBC, so I can be around my Grandbabies. It has made me feel awful! But I go on, knowing the end result is good. I have not started any diets, etc, no one seems to tell me anything except take this pill, take this treatment..etc. I do ask questions, but I guess not the correct ones. I am on vitimins, plus like I said lots of pills.
My husband is my rock, and my grown children are all there for me, but I still need to talk to someome who can help get me through this. Someone who has it or a loved one who had it...someone with experience in this horrible life robbing cancer. I am only 53....and I have no symptoms of this cancer, never have had, was found by accident. My skin is not yellow, I doi not itch, I just have cancer....my hair is really thin, but still with me. I have not dropped weight. So I guess so far so good. I just know I am dying. It is a horrible feeling to wake up to each day. I know we can not guess when it will happen and God takes us when it is our time. And doctors don't know everything etc.. I hear it all. I do have hope. But it is a hope of longer life not cure. Because there is none. Can I be the first? I have so many questions floating in my head each day it about drives me crazy. I want to not have this. I want to go back to where I was 1.5 years ago, when I went with my husband on the Harley just for fun, or ran in the yard with my Grandson to play baseball. Or planned on a trip with husband just for the heck of it without wondering if I will feel good enough to go. UGGHHH! I am sorry ...just venting!

stage4liver
Posts: 46
Joined: Apr 2010

I'm so sorry to hear about your cancer. It's hard.. very hard on everyone!! I was diagnosed just 6 weeks ago with stage 4 HCC, been through 3 hospitals, and cant even count how many tests, scans, and blood work. I underwent a resection of a 13.5cm tumor on my liver 4 weeks ago but they found a bunch more that couldnt be resected. Was told about a year to go! I'm 41 had no symptoms until one night of pain in my side that kicked off the nightmare. I also don’t fit the top 3 reason for HCC. I have a great wife and 9 yr old, family and friends that have been awesome throughout all this so far. I know its only the beginning on the cancer journey but I also know I’m not alone. To go back 6 weeks and not have cancer running though my mind would be awesome but not a reality. I also know beating liver cancer is pretty tough and rare!

What struck me and compelled me to respond was you comment on how horrible it is to wake up each day and I might have misinterpreted… If you're in pain I'm sorry. How do you process someone telling "you have about a year to live??" I searched google “beat liver cancer, cure liver cancer, HCC, everything and read all the doom and gloom about this disease which most of what I found already has a death date stamped on my forehead. I've cried my eyes out saying I dont want to die..not now!! So here’s where I’ve put my mindset in addition to all the praying … first off started by saying F**k Cancer!! It has literally consumed every inch of me physically and emotionally for about 3 weeks until I told myself I wasnt going to let it run my life. I’m back to work full time now too. Secondly I took all the info I found online and formulated my own hybrid diet I can live with as all the the docs say is eat a balanced diet. I’ve gone mostly; fruit, veggie, whole grains, good fish, low salt, low sugar, low dairy and very little chicken and beef. Now keep in mind I was a meat and potatoes guy prior. I started drinking Essiac tea 2x a day, taking milk thistle and also a multivitamin. Thirdly I found new doctors that didn’t date stamp me so transferred my care to Sloan in NY, I live in Wisconsin. I don’t know if anything is working yet but can tell you I wake up feeling pretty damn good (once I look in the mirror to make sure I don’t look like Bart Simpson) have a more positive outlook and I really try not to think about the dying aspect of it, we all know the bad of cancer. Rather I try to keep in my mind I'm still ALIVE NOW and try to appreciate each day for what it is (something I havent dont in years as my life was going by so fast I didnt take the time to slow down)....another day alive to see my little girl, spend time with family and friends, go places or even just lounge out at home. Someone recently told me this….remember no one is guarantied tomorrow cancer or not.

Best wishes and good vibes your way!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network