GALL BLADDER MALIGNANCY

Hi Captain cool ,

My name is Syed and I’m a member of the Community team here at Macmillan. I hope you don’t mind me reaching out on the Community. I’m sorry to hear about your gallbladder cancer diagnosis. Whatever your circumstances may be, we will try our best to support you. I hope you can find the Community to be a place of kindness, comfort and positivity.

After reading your post, you are welcome to use the Community and ask about member’s experiences, however just as a reminder, we would always suggest getting in touch with your GP or medical team first as they are able to provide you with the most relevant medical information relating to your case. Please note, we do not have access to medical records at Macmillan.

On the Community, we have our Ask a Nurse section available. Here, you can ask our team of nurses certain questions you may have around diagnosis, medication and treatment. They aim to respond within 1-3 working days on the site. Please feel free to post here, if you feel comfortable doing so.

You are always welcome to call our Support Line on 0808 808 00 00 or alternatively, click here for webchat and request the Nurses from our wide range of experts. We are available 8am until 8pm, 7 days a week.

I'm hopeful that other members may reach out for support. If there is anything else me or my team can do, please don’t hesitate to get in touch with us via Private Message or on community@macmillan.org.uk and always remember the Community is available 24 hours a day, 7 days a week.

I wish you all the best,

Syed

Macmillan Community Team

I'm taking Capecitabine tablets, currently on my second cycle, after liver resection.  

My gallbladder cancer was discovered in a routine scan after my gallbladder was removed because of gallstones last September after two years on the waiting list.

(Note: My circumstances aren't quite the same as yours. I wasn't offered the option of IV chemotherapy once they had decided on the current diagnosis: previously they had decided that the cancer had spread to the omentum and IV chemo+ immunotherapy was the treatment offered - then the diagnosis changed and tablets were the only option I could get - that or do nothing except monitoring.)

Anyway, it's early days with the Capecitabine but the first cycle was fine.  A bit of tiredness with a tendency to be sleepy after dinner in the evening, but that didn't stop me leading a full and active life. No other side effects noticed.  Just started the second cycle on the same dose (2150 mg twice a day).  

Have you already decided which treatment to have?  What was the IV option?

Thanks Anees. Hope you are doing well. i am also on Capacitamine one cycle will be over in 7 days. Nothing much except being sleepy. Work is going on routine.

Glad you are also coping well on the Capecitabine.  

UPDATE: So that diagnosis was deemed wrong after the next scan and now I have metastasised cancer diagnosis with "slight progression" whatever that means. After three cycles of Capecitabine, that was discontinued and I am now on my second cycle of immunotherapy plus Gem/cis chemotherapy aiming to prolong life.  I wish I had fought harder for the IV therapies back at the end of January.

I know this forum is pretty much dormant, but just in case someone is reading and it is meaningful to them.  

Hi annees 

My name is Colette. I'm sorry to read your posts about your diagnosis. I missed the original post on this thread because I was having some surgery for metastic thyroid cancer. 

I have stage 4 Metastatic gallbladder cancer and have been dealing with it for a long time now. Having a diagnosis of gallbladder cancer is a lonely place to find yourself. 

I don't have any wise words regarding your treatment plan but I have had the GemCis treatment twice now over the last 9 years and that was through IV lines and then a picc line. I don't know if was any more successful than tablet forms of chemotherapy but I'm sorry you feel you didn't push harder for the IV treatment option. 

Don't be too hard on yourself, when we enter this whole world of cancer and everything that goes with it, it can be hard to advocate for yourself, trust me I know first hand.

I hope you're doing as well as you can right now and your new treatment regime is a good fit for you.

Colette 

Thank you, Colette and I hope your surgery for metastatic thyroid cancer went well.

It is so interesting to learn that you have been dealing with the stage 4 metastatic gallbladder cancer for such a long time. The only numbers I have been told or seen are so very much shorter and it's good to know that they have not applied to everyone. You are right about gallbladder cancer being a lonely place to find yourself.

I believe I am on the right standard of treatment now, and have been researching further with the aid of the website my oncologist mentioned might be helpful (AMMF). And learning fast, because I have to, to advocate for myself!

Let's see how this course of immunotherapy and chemotherapies works for me.

Thank you again for replying, especially at a difficult time for you after surgery.

annee

Just saw your replies, Captain cool.  How's it going for you?  I only had the tiredness and a bit of tingling and numbness in fingertips and feet, about 99% fine since I stopped the tablets a month ago and switched to IV treatment.

I'm so happy to hear your oncologist has steered you in the direction of ammf, I literally found them last year. I had no idea there was any charity remotely connected to gallbladder cancer and found it purely by chance. 

I know the statistics are difficult for us because they are grim but my story is so different from the norm. Mine is apparently indolent and doesn't act how everyone expected it to and so yes I am coming up to my tenth year in January so where there's life there's hope. 

I do write a blog about my experiences of living with (not dying from) GBC. I find it cathartic but it's not for the feint of heart ha ha..

I hope you keep well. 

Colette 

Thanks, Colette. Is it allowed for you to mention your blog?  I'd like to read it.