Gallbladder Cancer - 2012 (Any Stage)

lirok said:

Rocky.........how are you doing?
Hey Charmi, your timing is impeccable. I have been in Florida the last few weeks and just returned home to NY on Sunday. My doctor took me off my chemo for a month to let my body heal a bit. I have been having severe side effects and trouble getting around. I had a great vacation and upon my return I went to Sloane on Tuesday for a set of scans. I have been showing signs of jaundice and my billirubin count has gone up alot in the last month. They feel that my stents in my liver are blocked and need to be replaced. This is causing the jaundice and abnormal test results.

The good news is that my CA-9 Antigen count came back down to 60 from 75. Also, my doctor told me on the phone that my scans looked good. She knew I was worrying and wanted me to know before Friday (tomorrow) when I go back to see her. I am more concerned obviously about the cancer than the billirubin. I have the stents now well over a year and everyone has told me that it is time for them to be swapped out.

Anyway, I am doing fine and hope that you and Mom are doing great. Great to hear the good reports on Mom. It just proves the point that this disease is not necessarily a death warrant. You just need to stay positive and get good treatment. Faith and prayer also come in handy.

Best wishes to all on this board for continued health and improvement with your situations.

Rocky

lirok said:

Rocky.........how are you doing?
Just to add to the above. I just returned from my oncologist and was told my cancer is UNDER CONTROL. No additional chemo is scheduled at this time. All of my markers were excellent. Antigen down to 60 from 80 and this all was after 6 weeks of NO TREATMENT. Its the best news I have had since my initial diagnosis. Naturally they will scan me regularly to keep an eye on things. I also have to go in and have my stents cleared out as I am showing signs of jaundice. These were placed in almost 16 months ago so they have done their job well.

My next doctors visit is in September. That will be almost 3 months without any treatments. I could not be happier.

Keep fighting,

Rocky

hillaryjoRN said:

First of all, you are not
First of all, you are not alone, we know what you are going through! Don't worry about the statistics, you are not a number.
secondly my family and I also wanted to seek the best place with the most experience treating gallbladder cancer, but that place doesn't really exist since gallbladder cancer is so rare. we decided as a family to have treatment locally for my mother, our local oncologist consulted with a Dr. from Sloan ketting in NYC (because we were told that was the best place) we found that treatment is pretty much the same where ever you go, for my mothers stage of cancer Stage 2 or T2N0M0, which sounds like what you have. But Go and seak another opinion, so you don't have regrets! I am interested to hear what MD Anderson has to say. Happy you found this site, it has been a blessing for me and my family.
--God bless you on your journey to finding the right treatment and care! --Hillary

Jean160 said:

Hang in there......
Yicks, Cheryl. I have been worried about you. Have not heard from you in awhile. I wondered if you had been in the hospital, and of course, I would not know! I am so sorry you had that complication. I am glad you are up and moving! It takes a while to get your strength back. Keep pushing! Ouch... 3 months is a long time. I am sending you healing thoughts and prayers. Keep strong and determined! Jean

Meg2003 said:

Update, it's been a while!
Hi Everyone,

I just wanted to give you all an update and let you know my dad is still fighting. He was diagnosed in January of 2012 with stage 4 gallbladder cancer. It's been a bit of a roller coaster ride.

He was originally approved for resecting and then they decided in was inoperable. Due to increased fluid build up in his gallbladder they decided to FINALLY remove that in June. When they went in there, they found that the tube they had inserted to reduce fluid in gallbladder, had punctured his bowel so they had to remove 3 inches. In otherwords a somewhat minor surgery turned into a huge one with an 11 inch incision and a lengthy recovery.

He finally gained the weight back and his port was put in and now 2 weeks later he has a painful bulge in his right upper abdomen. He thinks it's a hernia, and I can't help but hope that's what it is. Who new you would ever wish for hernia? Has anyone else experienced this? He leaves for the cancer center again Tuesday so he's too afraid to go to any doctors here which could cause a delay on chemo if they admit him.

westie66 said:

Gallbladder Cancer and All It Entails!
Hi Jenny and Meg: First, Jenny. My path has been similar to your mom's - gallbladder tumour extending from the gallbladder to the liver in October 2009, had it all removed April 2010 (but not the other bits that should have been taken out like lymph nodes), started chemo September 2010 after a 4 month incision healing process - the chemo was a cocktail of gemcitibine and cisplatin but it didn't work to shrink the small tumours that started on my peritoneum and liver. In March 2011 started a much more aggressive chemo called folfirinox which is oxaliplatin + irenotecan + 5FU pump + leuc.....whatever it is. Had 14 treatments that stopped May 2012. This is a much nastier regime than the cisgem one - neuropathy, cold intolerance, constant diarrhea, fatigue. As you'll see above, I ended up in the hospital for 3 months with a perforated bowel. But it did work to shrink some of the peritoneum cancerous nodules and slowed down the growth on the liver. Another woman on the peritoneum discussion thread has reported that a similar regime as your mom is having appears to be working on her 27 year old daughter and she will be on chemo for life. The inclusion of irenotecan in the "normal" folfox regime I think is important but it is a nasty treatment and I don't want to go back on it! But may have to.

Now Meg. I too developed a hernia after my first surgery that removed the gallbladder, its tumour, and part of the liver. Mine was an incisional hernia that I had for 2 years and was repaired during my surgeries in May 2012. He should be wearing a binder to keep the hernias supported. Mine didn't hurt but I looked 9 months pregnant!

Cheryl

Meg2003 said:

Tracier
Hello,

My dad (63) was diagnosed with stage IV gallbladder cancer in January 2012. His had spread to his liver, abdominal wall, and rib cage. We checked out a few facilities but felt the best about Cancer Treatment Centers of America. They are awesome and truly care about their patients. My dad was told originally that his was inoperable but they did end up doing surgery due to quality of life issues and removed his gallbladder. He was told he would never go into remission (without a miracle of course) but they believe he can live with it being 'controlled' for a VERY long time.

This facility focused on being positive. They do cover airfare for the patients and once they need caretakers, they will cover their airfare as well as long as you have private health coverage. My mom says it doesn't feel like a hospital at all and the doctors and nurses are very friendly and supportive as well as the other patients. My mom refers to it as a private 'club' but of course it isn't one anyone hopes to join.

This cancer is a tricky one, but it isn't impossible to beat and he could very well live with it for years to come as long as you start treatment right away.

Chemo for some is tolerable, which has been the case for my dad. They give medications through IV along with chemo to help with nausea. I highly suggest never turning those down. He is usually tired for a few days after infusion and then is back to his normal self. He hasn't lost any weight and does not look like a cancer patient at all. He's currently on a 6 month round of chemo (infusions every 2 weeks)which will be done in November and then they'll take him off for about 3 months.

They have done several scans and they were all clear, but the recent surgery showed it's all still there. This form of cancer really is a pain in the butt, but despite what doctors may have told him, there is still hope. From what I've heard, so many fighting this cancer can still go about their day to day lives while going through treatment. Do not allow your cousin to settle on doctor or facility who doesn't give them hope.

Good luck, we'll all be praying for him!