Any survivor of duodenal/cholangiocarcinoma?

Hello Mizziwoo,

I am sorry to hear about what you are going through recently.

If you have not already done so, visiting this older thread may provide you with some personal experiences:

https://csn.cancer.org/node/193733

Since cancer is a heterogeneous disease, and given that treatment plans are being revised fast to accommodate new findings, every case is very unique. To add mine, my wife has been diagnosed in 2016 with a stage 4 disease in bile-duct/liver, and originally described as Cholangiocarcinoma or Hepatocellular Adenocarcinoma. She had metastasis to her lungs, kidney, adrenal gland, and multiple lymph nodes, and was later categorized as with unknown primary. Her disease was unresponsive to initial attempt with chemotherapy for 3 sessions (oxaloplatin and 5FU combo). During the chemo, her health and liver function continued to deteriorate to almost a point of no return. Apart of severe jaundice due to bile duct blockage, and respiratory distress due to plural effusion, the wild swings between constipation and diarrhea as a side effect of chemo were very hard to manage; nutrition and hydration were real concern. After multiple fluid removal from lung, and bile duct stent placement, the situation did not improve: she was completely bed-ridden, and the numbers for her liver function tests were sky-rocketing. Her first oncologist said it was matter of weeks. Luckily, her liver biopsy was found to have BRAF V600E mutation, and, as an only resort, she was put on BRAF and MEK inhibitors. Within weeks, that made a visible difference! Six months and three scans later, she is continuing to respond to the targeted therapy.

Since you mom is a relatively long survivor and has the disease confined to limited organs, these are indications that she has a fair chance to continue to fight the disease, but at this stage her system needs some external help in terms of some kind of treatment plan. I would get a second opinion about surgery from another oncologist. Getting a few molecular diagnostics done, including genomic profiling, may also provide some knowledge about “actionable” alterations/targets which in turn may help deciding on a treatment flow chart.

I wish your family the best.

I had my staging endoscopy/ biopsies to detect spread last Friday (today is Tuesday). They had promised me some results right after the procedure, but no such luck. I have to wait till tomorrow. I feel like everything else is on hold till I know.....as I was tld to expect surgery soon after, then whatever follow up..chemo, etc. I am a chronic pain patient too, so I am wondering how much addiitonal discomfort all of this is going to throw me into!  All that said... I swear I am trying to stay positive!!!

mizziwoo said:

Hello MyJourneyWithCancer,

Hello MyJourneyWithCancer,

 

Thank you for sharing your wife's story and I am so sorry to hear about what your family is going through as well. However, I am very glad that your wife's condition is improving. It is always inspiring and encouraging to read other people's success stories. Hope my mom can see improvements as well once she starts her chemo. As for now, we are getting a second opinion from UCSF since our oncologist in LA was not really giving my mom ANY hope. She was chewing gum when she told my mom that she has 8-12 months to live..... 

So we are hoping that through second opinion we can maybe do surgery or hear something more hopeful... 

I will read the older posts that you sent but has your wife (or anyone reading this) considered CBD or medical marijuana to help with chemo side effects? I have read online that it definitely helps with chemo side effects by increasing appetitie and as a natural pain killer. Some even claim killing off cancer cells but it is not scientifically proven obviously. I am not sure if your wife can benefit from this or not as everyone's case is different...

 

Best wishes to your family as well. Stay positive and strong! 

 

 

Thank you for the update.

I think you are in right track, and I am hoping something positive is on its way.

As for reducing the chemo side effect for my wife, we were in a continuing mode of utmost shock from the diagnosis, and things were going beyond control so fast! After each blood work, I would like to have an independent look. As soon as I was able to sit down with the data, I was plotting them together as functions of time to have an idea about their trends. Multiple parameters of her metabolic profile were showing accelerated changes, and if you are waiting for the L/H flags to show up, you are completely missing the earlier interpretation (another version of chewing gum). Anyway, looking back, switching from chemo was only and right choice! My two cents: in case to case basis, open discussion with your oncologist and insisting of having a concrete plan B (preferably plan C as well) ready is very important.

You said it: let's stay positive!

My husband was diagnosed with Duodenal Cancer 5/12/17. On 6/6/16 he went in for a Whipple but found it had metastizied so they were only able to do a duodenal bypass. He went through 20'rounds of Folfox, 3 rounds of Folferi with Avastin and 2 rounds of Keytruda. He had a GI bleed on 11/10/17 and was hospitalized for 3 days and the on 11/14/17 he had a stroke. They aren't sure what caused the GI bleed or th stroke but now he doesn't want to get Keytruda because it can cause bleeds. We aren't sure what treatment options are available at this point. Our current oncologist says there aren't any other treatments but my husband is a fighter and feels he has a lot more in him. Any suggestions? We live in NC and he is only 52.

Thanks for reading!

MyJourneywithCancer said:

Hello Osproul
I do not have a direct experience with Keytruda, but, from what I read, response to immunotherapy like this takes a little longer to kick in. So having a reduced dose or a temporary drug holiday may be two options to continue in that route. Another completely separate option would be targeted treatment that addresses the specific tumor mutation, if known. EGFR and HER2 alterations are known in stomach and duodenal cancer, and a genomic profile from biopsy sample is needed for detecting these mutations.

we will be seeing a new Doctor at Wake Forest on December 4th. We are hoping they have new options. I will update after the appointment.

Thanks!