Gallbladder Cancer - 2011

bjs said:

Good news
Hi Cheryl and everyone,
I have not posted in a while but wanted to add to the good news stories. I have had no change in my cancer since my original diagnosis. I had my gallbladder removed in early March of this year but the cancer in my bile duct was and remains inoperable. However, it appears to be dormant from the radiation and chemo. My oncologist has another patient who has been doing well for five years now on my chemo regimen. She also has a bile duct stent as I do and cannot have all of her cancer removed surgically. I still hope for enough shrinkage eventually to get surgery but even if that does not happen, we are hopeful that my cancer can be managed long term as a chronic disease. My CT scans show no growth and my blood cancer marker is very close to normal.
I had six weeks of radiation last spring and took daily Xeloda throughout radiation. I then had a month "off" to rest and started Gemzar by infusion with Xeloda orally. My schedule is two weeks on chemo and one week off. I have one Gemzar infusion during those chemo weeks and take daily Xeloda. i have no nausea, vomiting or other bad side effects. I have had problems with low WBC and RBC but take shots for those now. i have needed two transfusions because of very low RBCs but have not missed any chemo sessions.
I feel very lucky to have done as well as I have. I have been able to resume my Pilates classes once a week and do almost anything that I want. i do get tired sometimes but have learned to manage that.
I wish everyone good results and it is wonderful to see that so many of us are doing well with our various treatments.
Betty

Betty
Betty, YOU ROCK!!!!! Awesome report!

westie66 said:

Oxaliplatin
Hi Charmi: I just had my MRI results and they are good - stability, some shrinkage even, and no new growth. No signs of cancer anywhere else except the nodules on the peritoneum. So maybe oxaliplatin will work on gallbladder cancer too. My oncologist is a genius at trying things, combinations. So again, I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU pump for 42 hrs. I am off chemo until January. We are looking at surgical options too. I managed to control all the side effects - and they are plenty! But am still happy to be off chemo for awhile!
Cheryl

Scaniety/ fatigue and other issues
Hello to all. Rocky, I imagine you will be getting your scan results and I want to send you well wishes & prayers for good results. I would agree with Haugy and Oneshot that it would be good to have your thyroid checked out regarding the fatigue. Maybe they did test that with your workup? I was on thyroid medication before all this happened, and I have not required a higher dose, however I do get that checked on a regular basis. It seems that a number of you have gone to Slone Kettering; they seem to have good experience in surgery and gallbladder cancer. I live on the West Coast, but the surgeon that I had trained at Slone Kettering, so I was encouraged. I see him tomorrow for f/u, and he will also review my results with the tumor board. My oncologist said the CT scan looked fine without any sign of cancer.

I hope everyone doing chemotherapy now is doing o.k. It seems they each have their issues and side effects; I still have tingling in my fingers and toes...... still hoping it improves. But otherwise, I am feeling so much better. I would say my energy is a little less than it used to be, but definitely better off of chemo.

To Monarch....... I understand the struggle of wanting to be on the right chemo. One thing my surgeon said is that there is more than one possibility, and of course without extensive research in gallbladder cancer.... no one knows the absolute best answer. The important thing is that we know chemo can kill cancer cells. Whatever the chemo cocktail, we want to have our body respond. It sounds like your mom is doing very well, and I am praying that all the cancers cells were taken in surgery, and that the rest is, like you said, insurance. It is nice to see people on the discussion board from other countries: it helps to know that treatments seem to have similar threads. Happy Thanksgiving to all!
Jean

Monarch said:

Joan,
First and foremost, I
Joan,

First and foremost, I wish you the best in your treatment and your fight against this disease.

It has been recommended that my mom undergo a chemo course with Gem/Ox. She will either have that or Gem/Cis beginning in January. (She has already completed a round of continuous infusion 5FU and radiation.) I've been reading about Ox and it seems there are some harsh side effects from it. I will be interested to read what you experience as you progress through your course of treatment.

I have a question, I have read on several sites that if you are on Ox, you must avoid the cold for 5 days after treatment. It says that you should wear gloves if you are reaching into the fridge or freezer, not to eat or drink anything colder than room temp, and to always wear a hat/scarf/gloves, etc when out and about. Are you doing this?

If you have any advice/suggestions for my mom based on your experiece so far, I'd love to hear them.

Thank you. And again, my family's thoughts and prayers are with you.

Monarch

Hi, Monarch,

Thank you for your response to my post and for your good wishes. I hope that all will go well for your mother.

Unlike your mother, I'm getting GEMOX as the first-line treatment, and I don't know whether the other things she's taken might affect the side effects of GEMOX. Has her oncologist said anything about this?

I've now had four treatments at two-week intervals, and since the side effects may be cumulative, I may still be in the somewhat early stages. I experienced sensitivity to cold beginning immediately after the first treatment, and it was quite strong after the second one. The second treatment happened to occur during a freak snowstorm in NY at the end of October, and I didn't have gloves or scarf. No serious harm was done, but the pins and needles in my hands were painful, and I had to hold my hood over my face to prevent shortness of breath resulting from the cold air. As the days passed, I found that I was feeling tingling in hands and feet even when cold was not involved. I also had trouble -- briefly -- in swallowing even warm foods and felt tingling in my throat when I drank even room temp beverages. At that point, I started taking L-Glutamine at the suggestion of a doctor in the Integrated Medicine department of Sloan-Kettering. I take fifteen grams twice a day for the first seven days of each two-week cycle, beginning with the day of the treatment. I can't prove that it was responsible for the difference, but I've had almost no tingling since then except when I touch items from the freezer or sometimes from the fridge. It's not bad enough to cause me to wear gloves.

Just to put this in perspective, the tingling I've described is definitely tolerable. I'm not going to pretend that this is fun, but it's certainly do-able and well worth it. Depending on how old you are, your mother may be my age or younger, and at least so far, this is well within what I can handle.

Again, best wishes to you and to your mother. I hope that the GEMOX (or cisplatin) will be beneficial to her.

Joan4444 said:

Hi, Monarch,

Thank you for your response to my post and for your good wishes. I hope that all will go well for your mother.

Unlike your mother, I'm getting GEMOX as the first-line treatment, and I don't know whether the other things she's taken might affect the side effects of GEMOX. Has her oncologist said anything about this?

I've now had four treatments at two-week intervals, and since the side effects may be cumulative, I may still be in the somewhat early stages. I experienced sensitivity to cold beginning immediately after the first treatment, and it was quite strong after the second one. The second treatment happened to occur during a freak snowstorm in NY at the end of October, and I didn't have gloves or scarf. No serious harm was done, but the pins and needles in my hands were painful, and I had to hold my hood over my face to prevent shortness of breath resulting from the cold air. As the days passed, I found that I was feeling tingling in hands and feet even when cold was not involved. I also had trouble -- briefly -- in swallowing even warm foods and felt tingling in my throat when I drank even room temp beverages. At that point, I started taking L-Glutamine at the suggestion of a doctor in the Integrated Medicine department of Sloan-Kettering. I take fifteen grams twice a day for the first seven days of each two-week cycle, beginning with the day of the treatment. I can't prove that it was responsible for the difference, but I've had almost no tingling since then except when I touch items from the freezer or sometimes from the fridge. It's not bad enough to cause me to wear gloves.

Just to put this in perspective, the tingling I've described is definitely tolerable. I'm not going to pretend that this is fun, but it's certainly do-able and well worth it. Depending on how old you are, your mother may be my age or younger, and at least so far, this is well within what I can handle.

Again, best wishes to you and to your mother. I hope that the GEMOX (or cisplatin) will be beneficial to her.

Neuropathy
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 said:

Thanks Monarch
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

Incisional Hernia
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 said:

Incisional Hernia
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

Treatment for Gallbladder Cancer
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

Monarch said:

Where is Lily?
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

Gallbladder cancer clinics
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 said:

Treatment for Gallbladder Cancer
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

Treatment for Gallbladder Cancer
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