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Gallbladder Cancer - 2011

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hello Everybody!
Happy New Year! I know I’m a little late but better late than never.

I have started this new discussion thread because over the last year of posting we have ended up with many different threads going on at the same time. It was hard to keep up with them all. I had many people tell me that they couldn’t find where they originally posted.

Over the course of the last year I have met some wonderful people and I’m so glad that this forum has brought new friends into my life. I’m asking that you all come to this forum and tell us how you are doing, or if you are new tell us a little bit about yourself. There are many success stories out there and with so many people being diagnosed with gallbladder cancer recently we need to show them that there is a way thru this darkness. Give a small profile update (diagnosis, dates, treatments, where you are located, doctors that you love, things that have or have not worked for you etc... Also anything that you might want to share with others. We have lost some very special people in the last year but we always will carry them in our hearts and memories of the many discussions that we have had.

My name is Lily and I am a survivor. My diagnosis was in 2005 as Gallbladder Cancer Stage 4 and I was given a short time frame to live. It is now 2011 and I am so grateful to be here everyday. I had chemo, surgery and more chemo for a year and a half. Recovery was about another year and a half after that and I get better and better every day. I have had no recurrences at this time. I live in Henderson, Nevada (suburb of Las Vegas). I rolled the dice and Lady Luck was on my side. The two most important men that are in my life beside my husband of course is Dr. Russell P. Gollard (Oncologist) and Dr. Howard Reber (Surgeon – UCLA, Jonsson Comprehensive Cancer Center and Pfleger Live Institute). They all saved my life. I believe that you have to treat your body in its entirety (mind, body and spirit), Mediation, yoga, healthy eating and the list goes on. Do whatever makes you feel better.

Ask any of us questions and we will try and help you the best that we can.

Hope and Faith will carry you through.
Take Care
Lily

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I also take L-Glutamine powder (fermented) every day as well as Alpha Liloic Acid, Vit B6, and Calcium/Magnesium tablets once a day. I haven't had any problems with neuropathy since taking these supplements. I can even eat ice cream right after treatment. I was on cisplatin/gemcitibine and didn't have neuropathy with it but now have finished 12 treatments of oxiliplatin + irenotecan + 5FU; the oxaliplatin is well known for the awful neuropathy it causes but I haven't had any problems with it.
Cheryl

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Hope all had a great holiday and things are going well for you. Went for my scan results and was told that due to inflammation from the radiation, they were difficult to read. The only good news was that my liver and bile ducts looked clear which was the main area affected by the cancer. On a negative note, my CA 19-9 test which had been at 35 came back at a 116. In addition, I had attempted to return to work but just cannot do it. Constant fatigue along with joint pain and occasional fevers have sent me back to disability. I have another scan scheduled for 12-28. Looks like I have more treatment ahead.

Staying positive and continuing to fight the fight.

Rocky

Monarch
Posts: 36
Joined: Oct 2011

Hi Rocky,

I'm glad you posted. I've been thinking about you...and worrying.

It sounds like you got some great news in one respect. I'm glad that the liver and bile ducts look clear. That is huge! The time interval for scans is such a crap-shoot following radiation. It's good that you're getting another one in a few weeks. I will trust that it also returns the same excellent news...clear liver and bile ducts and everywhere else that they will be able to see more clearly on this scan.

I'm sorry that your CA 19-9 didn't come back with lower numbers. But at least they have caught this rise in the numbers early. So, you just hit it hard again. (I know, easier said than done...but you're a fighter!)

Did the docs give you any insight into the joint pain? I think the fatigue is pretty much a given. Your body has been bombarded with one treatment or another non-stop for several months. I'm sorry that it is keeping you from work but your job is to focus on beating this crap. It's your full-time occupation right now. I'm hoping that they reassured you about the joint pain and were able to give you something to help you keep it at bay.

Still praying...and believing!

Charmi

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Hey Charmi, they pretty much are blaming the joint pain on the Cisplatin. I saw my GP and even he said that it is one nasty drug. He also said my age comes into play a bit (I will be 54 on 12-12) in the bounce back process. You're 100% right when you say they will hit it hard again. I fully expect some additional chemo after the New Year. With all of this going on, I also was told I have developed a hernia from the surgery back in Feb. The sliced me straight from the center of my chest to just above the belly button and then across to the right side so that they could get at the liver. The incision just above the belly button didn't heal properly and when I eat a meal my stomach pops out a bit !!!!!! Its a little funny. I will need to have that fixed as well so I'll be in the shop a bit in 2012!!!! Otherwise I am still feeling good about everything. The liver, pancreas and stomach are all clear so hopefully whatever is causing the rise in my 19-9 numbers is not serious.

I'll keep you updated. How is your Mom ? I hope you and everyone else has the best holiday season with nothing but good health wrapped up in a bow.

Rocky

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Rocky: I, too, developed an incisional hernia from the big slice (same as yours) - I asked the surgeon why surgeons don't anticipate that that will happen (just about everyone I know who had surgery for gallbladder or other gastro-intestinal surgery has developed one) and he couldn't answer me! I figure it might be something to do with economics - 2 surgeries are more profitable than one! Anyways, I have had it for over a year now because they won't operate until I'm finished with chemo. It isn't your stomach I don't think "popping out" but rather your intestines. I have visions of them spewing out some day (like an episode I saw on Nurse Jackie or Grey's Anatomy). I wear an 8 inch wide elastic abdominal belt as that makes it feel more comfortable.
I had 12 treatments of cisplatin with gemcitibine and have just finished 12 treatments of an even-worse chemical oxaliplatin (and I'm 68). Not fun but bearable.
Cheryl

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Nzinan: I am not sure if oxaliplatin is used much to treat gallbladder cancer. My oncologist is trying it with irenotecan and 5FU to treat the cancer seeding that has produced 6 cancerous nodules on my peritoneum. Oxaliplatin is used most frequently in colon cancer which means you may have to pay for it if he doesn't have colon cancer. That's how it is here in Canada anyways. People have posted the names of specialists on discussion boards so I imagine you get some names. Be warned though that gallbladder cancer is still relatively rare so there may not be a whole bunch of experts out there. I have heard that Sloan Kettering in New York is very very good - even people from Canada are going there.
Good luck.
Cheryl

nzinan
Posts: 3
Joined: Dec 2011

Westie66: Thanks for the info about treatment and Sloan Kettering. I think you're correct about insurance coverage being tricky. I believe my dad has to go to Lahey Clinic because of his insurance. Luckily I have a cousin who's a nurse there, who asked her colleagues about who he should go to, and they said Dr. Stuart. He has his first oncology appointment next week.

I'm glad to hear your 12 treatments are over. I hope you are well.

Nora

Monarch
Posts: 36
Joined: Oct 2011

Lily,

I hope you are well and your absence is due to you being out enjoying yourself. Please know that you - and everyone on this board - have made such a positive difference in my journey. I am forever grateful!

Charmi

Jean160
Posts: 26
Joined: Sep 2011

Hi Nzinan. In regards to your question about the Lahey clinic. I cannot directly answer regarding physicians in that clinic (I live on the West Coast); however, when my husband and I were trying to read everything possible about gallbladder cancer, some good cancer information comes from the Jean Farber clinic in Boston. There are so many good medical centers in the Boston area, and I am sure they communicate with each other. It has been my experience that good doctors will seek the best information for their patients. The important thing is to feel comfortable with the specialist you see in regards that he/she is seeking other experts to be involved in your father's care. The frustrating thing is most people do not have experience with gallbladder cancer. But I found that my initial surgeon admitted where he did not have experience in the needed liver resection surgery. I felt I was given good options, and he referred me to specialist who had the experience (although even the one that I saw with the most experience in the surgery; had only done 15 cases in 12 years!

Rocky, it is good to hear that your bile ducts were clear. I wish those scans would show the detail we need. It seems surgical sites have their own inflammation areas that sometimes make some of the detail less easy to see. Hopefully your fatigue is getting better.

Cheryl, I am happy for you that you get to wait until after the holidays before more chemo. It's good to take a break, eh? The best of luck to you for the possible surgery down the line to get rid of those nodules. Hopefully they will be easy to take out!

I continue to feel good, but can't help but think of what a crazy and shocking year this has been. I try not to worry about future scans, but I would sure feel better if I was several years out from this initial diagnosis! Take care, all! Jean

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: First of all, Lily is fine. We email back and forth. But sometimes she needs to take a break from these discussion boards.
Jean: Now I have new information. My oncologist phoned yesterday. Apparently I have almost been accepted for the peritoneum stripping surgery (do I want it????) but before I am, I had to have a 3D CT scan, a PET scan, and laparoscopic surgery to look around my abdomen to see if there are things in there that the MRIs have missed. Hope none of this happens before Christmas! The surgery on its own is terrifying as it was in April 2010 that I had laproscopic surgery to remove the gallbladder, its tumour, and part of my liver - and ended up in emergency with problems, had another surgery and ended up in intensive care for 10 days! So, I'm a bit stressed thinking about it!
Cheryl

Jean160
Posts: 26
Joined: Sep 2011

Wow, Cheryl...... I can understand your anxiety. However, it sounds like they must feel you would be a good candidate. At least this laproscopic surgery would just be a look around and not the actual peritoneum stripping (they would not do that laproscopically). At least this time they know what they are dealing with and will have a more exact game plan. You are strong and have come so far. I will be sending extra positive thoughts and prayers your way. Take care. Jean

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Jean: thanks! Any surgery after last year freaks me out but the surgeon is a good one so I will worry about it after Christmas!
Had snow today so the ground is white and it is much colder than it has been. Feels more christmassy.
Cheryl

JayRay
Posts: 5
Joined: Feb 2011

Cheryl, Lily, Maudsie and new members,
First, I want to wish Cheryl good luck if she does have surgery. Cheryl, you have a lot of people praying for your good health.
I haven't written on this site since this spring, because I was busy going through chemo and radiation. It was tough, but I am still here. GB cancer is rare so I think it is important that we all let others know that we are out here and plan to be around for a long time. I am focused on taking good care of my body and enjoying each day that I have. My husband is getting me a bicycle for Christmas. I haven't been on a bike in years, but I think it will be fun riding around the neighborhood.
I just wanted to take a few minutes to wish all of us fabulous survivors of GB cancer happy holidays and good health to each of us in the new year.
JayRay

nzinan
Posts: 3
Joined: Dec 2011

Thank you Jean for your response. I will hopefully be more involved now that I have a semester break and will make sure that we are comfortable with who he sees. I know the surgeon removed the gallbladder and some lymph nodes, 3 of 7 were positive for metastasis. Don't know anything about the liver, I'll have to ask about that. I wish you all the best in your treatment.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Thank you so much for your kind words, JayRay. Yup, we all need to support each other and to make this disease more well known to change those terrible statistics! Check out the peritoneum discussion board too as one of the metatases of gallbladder cancer is to the peritoneum. I haven't heard anything more about when the surgery but have yet another CT scan scheduled for Jan 9. Then will be the PET scan.
Have a Merry Christmas!
Cheryl

maudsie
Posts: 54
Joined: May 2010

For ALL of us battling and surviving gallbladder cancer, have a great restful holiday, full of heath and hope, you all mean SO much to me, I'll be here in the new year, ready to join you all and move forward with spirit and unity.

Maudsie

Monarch
Posts: 36
Joined: Oct 2011

Hey Rocky,

I'm thinking you've recently had a follow-up scan. How'd it go?

Mom's second post-treatment scan is tomorrow. Results a week from tomorrow. Mom will then head into a round of Gem/ox as "an insurance policy".

Hope that everyone is doing well and that 2012 brings you health and strength.

Charmi

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi,
My husband was diagnosed in June this year with stage 4 Gallbladder cancer. Surgery was sadly not possible as when they tried they discovered the cancer had spread further than first thought (liver, bile ducts and nodes on his diaphragm as well as a large tumor in his gallbladder).
He is having chemo (gemzar and cisplatin) and coping remarkable well on it. The the last two scans have showed the tumors are stable even if they are not shrinking. He has also had profiling done to identify which types of chemo might be more effective if and when he needs to switch to something else.
Ok that's the introduction done......now I have a question, Hubby has been troubled with a cough on and off since starting chemo, his lungs are included in the CT scan and nothing worrying has been seen. I have read that Gemzar may cause a cough, has anyone else had any experience of this and if so what has helped.
I am so glad to have found this group.
Deb

maudsie
Posts: 54
Joined: May 2010

Welcome, Deb. I just wanted to say HI ....and welcome....but I have no answer for your question about what to do about a cough due to chemo (specifically Gemzar) -- my first thought is "how are the lungs?" but they are clear, good news. The nodes on his diaphragm I suppose could contribute to a cough, I don't know. Gemzar/cisplatin is a great chemo combo, so he's on the right track, let us know how things go moving forward.

Maudsie

maudsie
Posts: 54
Joined: May 2010

Welcome, Deb. I just wanted to say HI ....and welcome....but I have no answer for your question about what to do about a cough due to chemo (specifically Gemzar) -- my first thought is "how are the lungs?" but they are clear, good news. The nodes on his diaphragm I suppose could contribute to a cough, I don't know. Gemzar/cisplatin is a great chemo combo, so he's on the right track, let us know how things go moving forward.

Maudsie

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Hi Charmi !!!!!!!!!!!!!

Hope your holidays were great. I was back at Sloan for my follow up on Tuesday. The latest scan showed basically no changes at the original site of the tumor. I still have some "spots" that the radiation did not affect. They are unchanged. I have no new growths and my liver and bile ducts look good. All of my major organs look good. One problem is that I have a couple of lymph nodes in my chest that have shown some growth. My 19-9 Antigen test came back at 114 which though still high is less than the 116 from 4 weeks ago. Doc is a little concerned about the nodes so I am going next week for a PET scan at the main building. They are also doing a bone scan to see if they can see something to explain my continuing joint pain. I am still having a tremendous amount of pain when walking or climbing steps.

All in all, not a bad visit but I was hoping for better. I have a feeling I have some additional chemo ahead. On a positive note, I was approved for Social Security Disability. We just keep our head up and keep fighting the fight.

Thanks for thinking of me and I have your mom in my prayers. Hope everything continues to go well.

All the best to everyone else on this board. May 2012 bring us ALL nothing but good health.

Rocky

Monarch
Posts: 36
Joined: Oct 2011

Rocky,

I'm glad for the good news...and certainly hoping for the best on your PET scan. Mom's original CT scans showed a worrisome lymph node in her chest (next to her vena cava). The doc was able to get to the area and remove all the "junk". The results came back clear...that is my wish for you, too! I'm hoping they are just reflecting inflammation from all your treatments and procedures.

We get Mom's CT scan results on Wednesday. That ol' scanxiety can really get to you at times! When Mom had her scan last Wednesday, she also had blood work and a port flush. Well, they got the first saline in with no trouble but couldn't draw any blood through the port. After several attempts and a trip to interventional radiology to have a port scan, they were unable to get the dye in for the test. Because she'd been stuck 5 times in the port, they decided to give it one more go next Weds after the scan results. But, it looks like we'll be having the port replaced within the next couple weeks.

I'm glad you got the disability approved. One less thing to worry about.

Let me know about your scan results (PET and bone). I'm sending positive vibes your way...and so are my parents. As always, you are in our prayers!

We will both have good news to report later this week. I just know it!

Charmi

(btw - think I mentioned it but in case I didn't, Mom was having leg pain too. They found she had a dvt but aside from that, her legs just hurt. She's been on Celebrex for a few weeks now and it has definitely helped.)

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Everybody!

Happy New Year to all my old friends and many new friends that have posted to this board since I have been MIA. Many good things have happened in the last couple of months for me, most notably my daughter graduated from the University when I originally didn’t know if I would be there to see her graduate from High School. I got my last scan of the year and everything was good. No recurrence of cancer!

I spent some time reading all of your new stories and I am truly amazed at the strength and courage that all of you possess within yourselves and for the ones that you love.

Thanks Maudsie, Cheryl and Murray for taking the time to help others with their journey.

This is a very nasty disease and going through this journey takes patience, perseverance and never letting it get the best of you.

Just a few short notes regarding a few things.
1) L-Glutamine is the best thing since sliced butter. My oncologist let me take it during my chemotherapy and I continue to still take it. After 6 years you would think that I would no longer have the tingling in my hands and feet but now at least it is minimal.
2) I too had coughing issues attributed to Gemzar.
3) Fatigue is still with me but it is bearable.
4) I have short-term memory loss from my aggressive treatment.
4) I still am prone to infections but it is just bothersome.
5) Joint pain is a given but manageable.
6) I still have to take Potassium pills daily as the chemo did a slight number on my kidneys.
7) Exercise helps.
8) Gallbladder Cancer is a disease that is on the SSA – Compassionate Allowances Listing (CAL) for expedited disability benefits.
It can be hard to realize within ourselves that we aren’t able to return to work as it is a full time job to fight this disease. I went on Social Security at the age of 46.
9) Finding out what works for you and what doesn’t takes time, be patient.
10) Have short-term goals, so you always have something to look forward to and rejoice when you meet those goals.

Hope and Faith will carry you through! Don’t ever give up!
Happy and Healthy 2012!
Take Care,
Lily

Monarch
Posts: 36
Joined: Oct 2011

I am so glad to see your post, Lily. And even more happy to read that you are doing well.

Congratulations on your daughter's graduation. And, wooohoooo - a clear scan is great news.

You have been a Godsend to me and my family. I can't thank you enough for sharing your journey with all of us here.

Here's to a year of health, happiness, fun, and love for everyone.

Charmi

Monarch
Posts: 36
Joined: Oct 2011

(deleted double post)

LucyDoodle
Posts: 22
Joined: Jan 2012

Lily, thanks for the post, it's good to know that there might be a reason for the cough, Great news on the scan
Maudsie, thank you for the welcome, it's good to know we are not alone in this.
Debbie

Monarch
Posts: 36
Joined: Oct 2011

Wanted to give you a quick update...and an excellent one.

Mom had her second post-chemo CT scan. It came back clear. No recurrence. Her CA 19-9 is 20. They've decided to not do any more chemo at this time. The doc had been advocating a round of Gem/Ox but has agreed that we should hold off on that. The hope is that Mom will never had to have it - but if she does, she will. Next scan scheduled for April.

Mom's port has stopped working. So, on 2/2, they will remove it. There was discussion about replacing it but again, since there are no current chemo plans, they decided to hold off on a new port, too.

We have been blessed.

My family continues to pray for everyone on this board, all of your families, and for your medical teams as well.

Charmi

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

That's great news Charmi! And welcome back Lily! So glad you're good.
Cheryl

haugy
Posts: 9
Joined: Sep 2010

That is terrific to hear Charmi. Welcome back Lily , its great to hear youre scan went well and thanks for posting the tips.
Murray

LucyDoodle
Posts: 22
Joined: Jan 2012

Steve has just started his 10th cycle of gemzar and cisplatin; our local oncologist is convinced that the cancer will shortly find a way around this chemo and I wondered what other regimes people tried.
As well as our local oncologist we see a wonderful doctor at Johns Hopkins who though realistic at least seems ready to do battle with the cancer! Our local oncologist does not give me the same impression, it's more like she has read the statistics and Steve is one of them (the dreaded 6 to 9 months numbers). I think more than anything it is a lack of empathy, I am sure she does care but it can be a real downer having a conversation with her! Has any one experienced this and if so how do you deal with it.
Sorry to ramble
Debbie

Monarch
Posts: 36
Joined: Oct 2011

Debbie,

There are others who can better answer your questions about various treatments. I know that they were talking about giving my mom gemzar and oxilaplatin - which several other here have had. I know that that is what the doc is keeping in his back pocket if it is needed in the future.

What I can address is the downer docs. When my mom was diagnosed last April, the doc told us 6 months. The next appointment (where we discussed the liver resection), the doc started going over statistics and my mom stopped him. She told him she appreciated all of the numbers he was reporting - but that was someone else, not her. She told him plainly that she was a person, not a statistic.

I began referring to us as “Team (last name)”. I’d tell him that I was so glad he was part of “Team (ln)”.

Mom had her liver resection and the doc went after a "questionable" lymph node next to her vena cava. He got it - and I believe that part of that was because he was looking at Mom as a person - and us as a family. We were blessed, and all of the pathology reports came back clear. He was amazed - and became Mom's biggest champion! That’s when I began thanking him for being part of our miracle.

On to the oncologist. Statistics, statistics, statistics. The oncologist started into the numbers - Mom, Dad, and I stopped him immediately. He is a great doc but is definitely a glass 1/2 empty type of guy. I told him from the get-go that he was part of Team (ln) and that we fully intended to win this battle. He still has a tendency to want to look at numbers, so I never go in there that I don't have a story about folks on these boards. He can give me a number and I'll give him many living, breathing human beings. Still, it is frustrating, and quite honestly frightening sometimes.

Radiation oncologist...from day one, he has been absolutely positive. At the end of our first appt, I thanked him for not pulling out stats. He said that that was “old news and other people”. It has never been a question with him. His glass has been 1/2 full from the start.

Keep in mind that you and your family are a team and make sure the docs know it. The docs are part of that team, make them invested in the outcome. And, be sure to thank them for their role on your team.

I wish you and your husband all the best.

Charmi

LucyDoodle
Posts: 22
Joined: Jan 2012

Thank you for the positive reply, I am going to try and be more positive with her and stop her like your Mum did when she starts on numbers. It has got to the point where I dread having to talk to her because she makes the pair of us feel so down! I will try the new approach like you suggest, if nothing else it will make us feel better even if I can't change her thinking!
Debbie

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Deb,

Your oncologist has done part of her job to stabilize the tumors, but shrinkage is what is needed. Many oncologists who have never treated a patient for GB Cancer tend to be conservative instead of aggressive. If you and Steve are willing to go to the edge, she should be willing to go there with you. If not, you might have to find an oncologist that will be willing to roll the dice with you. Maybe the doctor at John Hopkins will have a suggestion for you. Ask him.

I feel that oncologists do get jaded as they don't always have success and therefore fall back into the statistics. It makes it easier for them. My chemo cocktail after a time wasn't doing much for me and my oncologist stated that we needed to find a surgeon that could be the artful hands for this disease since oncology is the science and we needed to move on. You need to find a good hepatobiliary surgeon that has experience with this type of cancer and may be willing to help you. You have to be your own advocate with doctors and never ever let them take away your hope. If you are willing to fight then the doctor's are more receptive to fighting with you. As Charmi stated, you have to become a team in order to beat this nasty disease. The doctor's will become vested in Steve's success if you make them a part of your team.

Stay positive.
Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Charmi,

What wonderful news to hear of her success! I'm so happy for you and your Mom! Big sigh of relief for you both. I bet she will be real happy to have the port taken out.

We are all blessed to have found each other to make this journey a little easier.

Daily prayers are going out for everyone.

Take Care
Lily

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

That is some FANTASTIC news right there. You couldn't ask for more. As for me, I had my appt yesterday to review the scans. The bone scan came back fine. They said I have some arthritis and found some trauma from an old injury. As for the PET scan, I still have some very small residual cells in the stomach and chest area (lymph nodes). There are no new growths. All of my major organs are clear. We are going to go ahead with some additional chemo to try and clear things up. I am having a port installed Tuesday and then start immediately on oxiaplatin and 5FU for the next 2-3 months. I will have the 5FU pump so I will wear it for 48 hrs. They trained my wife on how to disconnect so I won't have to make another trip to the city. As the doctor said, it is very small and we need to continue to manage it. My 19-9 went from 116-114 so that was somewhat better news.

I fully expected the additional chemo. The doc also said we have "tons" of options so we shouldn't worry or panic. We will manage it. I gotta say, I have one of the best oncologists around. I am doing some reading on the side affects of these new drugs. All in all, I am very upbeat. Its just a small bump in the road.

Hope everyone is feeling well.

Rocky

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Rocky: I too have gallbladder cancer stage 4 with spread to the peritoneum. My gallbladder, its tumour, and part of my liver were removed April 2010. We are now working on the peritoneum nodules (6 in total so far). I started with cisplatin/gemcitibine (12 treatments) and as that didn't do much for the peritoneum nodules I did a further 12 treatments of oxaliplatin + irenotecan + 5FU pump. A tougher regime but no major problems. We are now waiting to see what is next after scans I had a week ago. A PET scan is in the offing and maybe surgery.
Hope all goes well for you. If you need info on how to control oxaliplatin's often nasty side effects, let me know. I had bad reactions at the first treatment, took adv antage of advice on this website, took various supplements, and only had a problem with diarrhea after that.
Cheryl

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Rocky,

Great news on the bone scan. I think that arthritis just comes with getting older. I too have osteoarthritis in my back, which is giving me fits this week.

Having additional chemo to get rid of any of those little nasties isn't news to most of us. You will be able to go through this next course of treatment easier since you are becoming a seasoned chemo veteran. Cheryl (Westie) is the best person to talk to about how she managed the side effects since she just completed her treatment with oxiaplatin. It is still fresh in her mind.

Small bumps in the road are better than huge friggin hills!

Take Care
Lily

Monarch
Posts: 36
Joined: Oct 2011

I'm so glad that the bone scan came back clear. Mom and I were talking about that today. Her legs are so sore and get so stiff very quickly. She said that she thinks part of the problem is that she's been so inactive post-surgery, during chemo, etc that her legs are just protesting. LOL The problem is, when you've had something like cancer, everything scares you at first. (I was the same way after I had a prescription medicine induced stroke a few years ago...any new pain or odd feeling could send me into a frightened tizzy.)

You PET scan results are excellent, too! No new growths. Major organs clear. And a falling 19-9! That is just awesome! I hate that you're going to have to have more chemo but if that's what it takes, then full speed ahead!

Your doc sounds fabulous. I like his attitude. And YOURS!

Mom, Dad, and I are right there with you, Rocky. You and your family are in our prayers every night.

Best wishes to everyone!

Charmi

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM

Had to share this with everyone. I am so proud of my son. You won't believe it.

Rocky

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Rocky,

What a great story. I'm a little late in reading it but you have every right to be so proud of your young son. He will become a good man just like his Dad!

Hope you are doing well!

Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hello All,
I have not posted for a while, mainly because I cannot figure out how to post unless it is a "reply." I am obviously not very computer literate.
I was diagnosed at the beginnning of March, 2011. I had my gallbladder removed but the surgeon could not remove the cancer that had spread to my bile duct. I had a stent installed to allow my bile to drain properly and had several replacements of the plastic stent last year. Last September, a metal stent was installed and it has only blocked once a month ago. My doctors and I are going to establish a regular schedule to do ERCPs to clean it and prevent the blockages and resulting liver infections.
My cancer has not changed since my diagnosis. My oncologist thinks that at least some of it may be dead. Additionally, my CA 19-9 tests have been well within normal limits for many months. I also feel much better than I did a year ago even with my intense chemo. My oncologist says that it is incredible that I am doing so well. He hopes that we can continue to treat this as a chronic disease for a long time. I still hope for eventual shrinkage to permit surgery.
I have had some chemo related problems. I take oral Xeloda for 14 days with an infusion of Gemzar on day 1 and day 8. I have chronic anemia from the chemo and have a Neulasta shot every cycle and need occasional transfusions. But I have no digestive problems, my appitite is great and I feel well most of the time. I think that I am extremely lucky and fortunate to have such a great oncologist with experience treating this disease.
Here is a summary of my cancer treatment so far:
Six weeks of radiation and Xeloda from April through May last year. I believe that the radiation was very beneficial to me.
One month off to recover then I commenced my present reigimen of two weeks on Gemzar and Xeloda followed by one week off. I started that last June and it will continue as long as it continues to work. I will try other chemo if my cancer grows again.
I live in the Seattle area and go to Swedish Cancer Institute. Everyone is very positive in dealing with me and my husband although also realistic that I have a very serious cancer, as all of you know.
If anyone has a stent and has questions about how to cope with it, I am happy to share my experiences. I often read everyone's comments and get so much positive energy. when I was initially diagnosed, i received the same grim statistics that many of you have shared. But I always believed that I could overcome this, at least for a long time.
I wish everyone well and thnak you for sharing your experiences.
Betty

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Betty,

Welcome back! I'm so glad that you are doing so well. You are another testament to how far you can come with a positive attitude. You are an inspiration to all of us.
There is a new discussion thread that I started this year Gallbladder Cancer 2012 (Any Stages) since this one is so very long. Check it out if you haven't.

Take Care
Lily

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Did anyone have any issues with low grade fevers 100-102 during chemo? I had to have my bile ducts reconstructed and I have 3 metal stents installed. Recent scans show them to be clear but my oncologist feels that this is what is causing the fever.

Thanks,

Rocky

DiSiano
Posts: 3
Joined: Mar 2012

Hello. I am brand new to the site and need some assistance/advice. My 66-year-old mother was just diagnosed with adenosquamous carcinoma of the gallbladder following cholecystectomy for gallstones. She is very healthy and active, so you can imagine our shock. Her PET scan shows an area of high activity in the right lobe of the liver, which the doctors believe is metastasis. She is scheduled to have an exploratory laparotomy on April 10th. If there are no other visible lesions, the surgeon plans to resect the right lobe of the liver. They want to perform a portal vein Embolization on April 2nd. Apparently this will cut off the blood supply to the right lobe and make the left lobe "take up the slack.". Have any of you undergone this procedure? Would you recommend having it done? Is there any information you feel is vital for us to have? This news has knocked our entire family for a loop, and we're scrambling for answers while not being sure if we're asking the right questions! I am so glad I stumbled upon this site, though. Your stories have given me hope. I've shared some of them with my mom to encourage her to fight, to not give in to the statistics.
Thank you for any information you can provide.
Donna

DiSiano
Posts: 3
Joined: Mar 2012

BTW, Mom is being treated at Shands Hospital, University of Florida. Does anyone have any experience with that facility?

Donna

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