Newly diagnosed Colangiocarcinoma of the bile duct

Hello again, I have replied to you on my thread about the trial but thought I would try to find out a bit more about you & your journey so far.  I hope you have made a good recovery from your operation.   I don't know much about the whippel procedure.  My husband's tumour was inside the liver so they removed 50% and his gall bladder.

I'm presuming you live in America, it's interesting to compare what treatment is offered in other countries.  Our NHS is so often criticised but often praised when it comes to the big things. I hope you have lots of support and can make a decision you are comfortable with.  It is so very hard, there's no right decision, only what's right for you.

Take care & well wishes 

I had a robotic Whipple 4 very tiny incisions and one 2” incision to remove organs. Gall bladder, head of pancreas, bile duct, duodenum and part of stomach and 29 lymph nodes were removed. Cancer was visible in bile duct, head of pancreas and 1 node.  They remove a larger margin hoping to eliminate cancer except for calls that may have travelled via the 1 node. Recovery 6 days inpatient and 4 weeks I was driving. Retraining the digestive system and using Creon Pancreatic enzymes is a balancing act. Surgeon at Memorial Sloan Kettering was great but follow up and oncology plan was not. New York University Hospital  Perlmutter Cancer Center is considerd excellentI and I have now signed up for clinical trial immunotherapy along with xeloda for  6 months.
 We do not have NHI until after age 65 and it only covers 80%. The 20% balance is covered by private insurance that costs $300/month and up.  I pay in excess of $500 a month for a platinum plan that allows me to use any doctor.  It is a healthcare for profit system. 

Hi again,

Thank you for taking the time, it was very interesting to read about a slightly different diagnosis and treatment.  Despite your Whipple procedure being very invasive to several organs you sound as if you've made a good recovery.  I guess it's practise regarding the enzymes to get to know your body & diet.  I have read from others it's very manageable, I hope it soon becomes a very natural part of life for you.

My husband did actually have private medical cover which we used for diagnosis but when it came to the operation we were offered an excellent NHS hospital so we switched over.   Our system does get knocked a lot but the thought of high costs adding to the stress on top of a serious condition sounds particularly tough to me.

The trial my husband is on is a 'blind' one so there is 50% chance you might get a placebo.  Given his reaction we are hoping he is actually on rilvegostomig but there are no guarantees.  Is yours similar or will you definitely be given immunotherapy treatment?

Wishing you well in your recovery path.

My doctor is proposing the exact same treatment as your husband. I’m signing paperwork and another blood draw on 12/11. I am interested in knowing how your husband is tolerating the therapy.  
I am hoping I don’t get the placebo. This is a phase lll trial therefore AstraZeneca will be submitting paperwork for approval with the FDA to market this drug. This phase is a large group to prove the efficacy of the drug. My doctor told me this could be a cure.

the recovery from Whipple was not difficult; very little pain.  I left the hospital on Tylenol.  The most difficult adjustment is training my new digestive system.  I wish your husband well and a full recovery

Hi,

We are at the clinic this afternoon for bloods & if all is good we return the next morning for my husband to receive the 2nd immunotherapy infusion.  He comes home with the Chemo in tablet form which ideally should be taken 12 hours apart.  You need to eat a meal beforehand.  So there’s a little planning involved. 
I’ll let you know how this round goes. It will be great to keep in touch & support each other, I feel so lucky to have made contact with you. 
Wishing you well, I hope all your tests go well & you can soon start the trial …. 

Sadly my husband’s white blood cell count was slightly below the range the trial require. So we return next week, they are hoping a 2 week break of Chemo will allow them to recover.

I hope your tests go well & you soon have your treatment plan. 

Good to hear from you CillaJane. Clinical trial and chemo to start 1/2/25 provided my echocardiogram is good and baseline CT scan. Creon was increased to 24000 units and doing well with digestion. The hardest part is drinking 2 liters of liquids daily.  6 weeks post surgery and adding fiber, legumes and greens to my diet one at a time. I was told by pharmacist this will avoid constipation caused by Creon.  
 I keep looking for studies on capecitabine and expected survival for post Whipple patients. The best I found so far is 50.3 months that was from 2019. I’m hoping that has been improved

Hello from England,

Have you started the trial yet?  You do your dates differently in America so I am not sure if it was 2nd January or 1st February.  I have started a new discussion titled Artemis to see if there are any others.  If you have I hope you are doing well.  My husband has nearly finished his 2nd cycle after a 3 week break from the first.  His white blood cells were too low.  But all's good now (they lowered the chemo dose) & he's feeling very well.  No reaction this time after the infusion.

It can be stressful to research too much, new treatments are coming out all the time.  The trial must have shown some positive results for it to be taken to the next phase.

You sound as if you are doing amazingly well especially as you aren't long post surgery.  I expect it's a guessing game at the moment & maybe in time you find it easier to listen to your body & will gain experience in managing your symptoms. 

Sending you well wishes x