ARTEMIDE Trial by AstraZeneca

I started yesterday in New York City.  In the morning before my first infusion I took 3 500mg tablets of Capcitebine after breakfast. The infusion went well no reaction during or after it ended.  After eating dinner I took 4 500mg tablets of Capcitebine.The entire process was almost 3 hours. I am now 24hours ( 6:30pm NYC time) post treatment and I have zero side effects.

i was given a cell phone by AstraZeneca, the sponsor, to respond to weekly questionnaires during the course of a full year while in the trial.

i will update everyone if i should notice any issues

Hi Packaging Expert,

We're so pleased to hear all went well, it'll be so interesting to follow you and anyone else on this trial.

My husband was diagnosed with a Intrahepatic Cholangiocarcinoma and operated on mid September.  (left hepatectomy 50% & removal of gall bladder).  The tumour was successfully removed but he was told some perineural & lymphovascular invasion was still present???  The routine treatment offered in the UK is 6 months of Capecitabine.   

My husband was given the first infusion (20th November, 2024) late morning and started to feel slightly unwell and itch soon after we arrived home about 4pm.  His temperature raised and his BP was low.  He then came out in a raised red rash on his arms & torso.  Luckily we managed to get hold of the clinical team & they suggested taking an anti-histamine and not starting the Capecitabine that evening.  He does suffer with allergies to wasps & has to carry an epi-pen.  In fact it was similar symptoms that started his investigations that lead to his diagnosis.

The next morning he was fine and started the Capecitabine (2150mg twice daily).  During the second week he began to feel very tired and would need to have a sleep during the day.

After he finished the two weeks of Capecitabine his blood results revealed his Neutrophil count was below the level the trial required.  This resulted in a three week break of treatment rather than one while they recovered.

It was decided he would have an anti-histamine infusion before the trial infusion and reduce his dose of Capecitabine to 1500mg twice daily because of his age. (He is 77 in February).  His second cycle was non-eventful, and the reduced dose seemed to help with his energy levels.

So to-date he is on his third cycle, second week of Capecitabine.  Despite being given the anti-histamine infusion he did feel unwell the next morning and experienced similar symptoms to before, and has again today, a week later.  They are milder than the first episode.  He does feel tired sometimes and doses off during the day.

We find the timings of the chemo slightly tedious with having to eat something reasonably substantial beforehand.  So it's an early breakfast and later evening meal than we usually have.

Everything is very manageable so far.  He has renewed his gym membership for February, he likes to be active.  

So we are back to clinic for bloods on Tuesday the 4th February and if all's good he returns on Friday morning for the infusion.  The following week he is scheduled for his first CT scan since starting the trial.

He chose to do the trial mainly for the extra support & close monitoring even though there is a chance you are on the placebo.  He attends an NHS (State) hospital and sees an Oncologist & nurses designated to the trial.  The treatment is carried out in a separate ward for trials.  He reports his symptoms to the trial nurse and has a weekly questionnaire to complete.  We have emergency numbers to call if he develops a high temperature.  So we feel very well supported, I hope you do to.  

I hope that info helps you and any others who may be on the trial.

Sending you well wishes, it is daunting when you start something like this and hope you have minimal side effects, if any.  We look forward to hearing about your journey. 

xx

On a lighter note I forgot to ask how the weather is with you, are you still experiencing snow & freezing temperatures?  We have a daughter in LA who had to evacuate their home for a few nights.  Storm Eowyn has just swept the UK but thankfully Norfolk was not effected too badly.

Keep safe xx

Thank you CillaJane for starting this thread. I'm on my 5th cycle now. 

I had no symptoms before my surgery, but was diagnosed because a CT scan of my lungs showed a mass in my liver. My cholangiocarcinoma was intrahepatic, so I had the left lobe of my liver and my gall bladder removed.

I started on the trial in October, and so far the side effects have been manageable. I've had mainly digestive problems, and also I get very fatigued.

My hair is thinning and I've also lost my fingerprints so that I can't use the scanner on my phone any more!

Best of luck to all of us on this trial. This will be a good place for us to support each other x

Good to hear that you are tolerating the immunotherapy fairly well. I have noticed all my fingertips are extremely dry like sandpaper.  Is this anything you experienced after the start of treatment.

Weather here has been cold in the last week.  With global warming it is nothing compared to winters in New York 50-60 years ago.  The snow was just 3 inches on Long Ialand where I live near the ocean.  It is milder in winter and we have a cool ocean breeze in summer

Last week was the first time we had the snow removal service in two years.

May I ask, was your husband given a device for weekly questioning on his condition. I was surprised they were taking weekly surveys

I hope your daughter in LA is safe and did not lose her home.

Hi CillaJane,

I saw this post after the second one you posted today Thanks for the details regarding your husband’s  experience.  After 2 days I have zero side effects except for very dry rough fingertips.  The eating schedule is a bit inconvenient but if this process gives me a possible cure, I will do whatever it takes to beat this cancer.  My biggest problem is figuring out a diet that I can digest while also keeping the blood sugar numbers down. I need the Creon to digest food while it spikes my blood sugar.  
Everyone at NYU is wonderful, nurses doctors nutritionist social workers all help take care of the total person.  My husband is very supportive as you are for your husband.  Having a devoted life partner is key.  Sometimes I worry that he keeps a cherrie disposition while I know he is worried about my well being. My immediate family growing up was my parents and 4:siblings. Three have passed from cancer and two are currently cancer patients. I am optimistic and will do whatever is necessary to overcome this disease.

For you to be on this website is a great outlet where you speak to others on this journey. We support each other for the best outcome 

Valerie sending hugs

Yes, my skin has been very dry and my nails are very brittle. I moisturise my feet with urea cream twice a day, and moisturise my hands every time I wash them. So far my skin is intact, but has become very smooth and slightly shiny. So I would advise using urea cream and drinking at least 2 litres a day to keep your skin well hydrated. 

Best of luck!

Hi,

I am so pleased you have joined us.  All your tips are very useful.  Your  surgery sounds very similar to my husband.

My husband has suffered with peeling hands over the years, it strangely comes and goes, I believe stress related (googled today, it seems to be called acral peeling skin syndrome) so I will monitor his hands & feet regularly.

And it's good to read you are finding the side effects manageable and are past the half way mark for the chemo now.  Hopefully these will ease/disappear once your chemo finishes.  It's all going to be worth it if it kicks this cancer out of touch.

I'm thinking you must have had one clear scan and perhaps not too long before the next?  The wait for the results will be an anxious time, we have that next month.

Sending well wishes from a wet & windy Norfolk. Take care x

Hi,

The name Long Island sounds very lovely.  I have only been to NY once in February, it snowed the day we went up the Empire State Building but was very warm the next day as we walked around Central Park!  Yes thankfully our daughters apartment was safe despite being up in one of the canyons.

Yes he completes a weekly questionnaire, maybe the same of yours?  He says it includes questions about his hands.