sweetgreen
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Pat, Thank you so much for sharing your story. I wish we had done genetic testing on my husband to learn more about his disease. We didn’t know it was an option! His mother’s cyst was benign, for which we are grateful. I apologize if I alarmed you. I wish you many blessings on your continued journey of good health! Bridget
Hi Shelly, my husband was on Haldol, an anti psychotic, for hallucinations like that. It did the trick and gave him several clear days. He is off it now because it has become difficult to swallow pills…though I think it can be crushed. Hope that helps.
Thank you all for the advice! We went to the clinic today and when the onc saw me, I could tell he knew we had business to attend to! ;o) So, he let Jeff order another CA 19-9 to see if the higher numbers were a fluke, and he gets to take 3 weeks off. Because Jeff is so healthy and showing absolutely no issues, and his CT scans have never shown a change, he is confident that he will maintain for a while longer. Jeff gets to have a new CT scan next week, and then he’ll determine what new chemo cocktail to give him. The Abraxane worked well for 8 months, but with his numbers inching up we want to stay ahead of the curve and any explosion of the disease into other areas of his body. So, it’s time to switch. Jeff never progressed on Gem-Carbo (he had toxicity effects, platelets were too low), so he’s thinking about putting him back on Gem-Cis with the Cis spread out over 2 doses. OR, he said he’s also had really good results with Irinotecan on its own or with Gemzar, and he’s going to look to see if there is a combo that combines those with Cisplatin. He also said that since Jeff is doing so great, he would never advise him to go into a Phase 1 trial. He had thought the researcher would have some Phase 2 trials, but at this point we don’t need to look into that. Huge misunderstanding. What a relief!
Hi Melinda– congratulations on your good news! I’m so happy for you. I wish we could have followed in your footsteps and done this trial as well. Unfortunately, my husband has a stent, so they wouldn’t let him in for fear of an infection. I hope that your path continues on such a positive note. Thank you for being a part of such an amazing trial and showing all of us how successful they can be. — Bridget
Hi Marion, This is a great question. I agree with everything posted above. Additionally:
* because there are so few options with CC, and it’s so aggressive, we didn’t want to gamble on something that hadn’t been proven to have some success.
* searching the clinical trials database is exhausting. The descriptions/search terms don’t seem to have a lot of consistency. You could search on cholangiocarcinoma and get one set of trials, and search on bile duct cancer and get another completely different set. Sometimes it’s better to search for solid tumor and then narrow it down.
* it would be helpful to have a patient advocate who can search for trials for us.
* quality of life is a huge limiting factor. My husband doesn’t want to be far away from us for months at a time. The kids need to stay in school, and I need to keep my job, so we wouldn’t be able to travel with him.This sounds interesting! How do you know if you should be in a Phase 1 or Phase 2 trial? Maybe I should send this to my husband’s oncologist.
Here’s the link to the one at Wake Forest: http://www.clinicaltrials.gov/ct2/show/NCT01766219?term=cholangiocarcinoma&cntry1=NA%3AUS&state1=NA%3AUS%3ANC&rank=4Hi Everyone — Well my husband’s CT scan is basically stable. Some of his lymph nodes were smaller, one is a bit larger. His CA 19-9 continues to go down. It’s now at 427. We are going to stay on this course because we are on a compassionate care grant from Celgene and receive the treatment for free (Aetna wouldn’t cover it, and it’s $2,000 per treatment). Plus, he looks and feels great.
But, we are desperately looking for what to do next. We wanted to get into the immunology clinical trial in MD, but because he has a metal stent he is excluded. Apparently there have been a lot of infections with patients with stents. His stent is in a silicone sleeve, so if we really wanted to push it we could find a doctor who would remove it. But, his onc thinks his duct would close right up again. Let me know if you can think of anything — especially anything to put us into a remission for awhile or kill the beast.
Thanks for being hopeful with me!
Thank you so much for sharing your perspectives. The first hand experience with being “showered” like this is so helpful to read about. We have been to many fundraisers for cancer causes after someone passes away, but this is our first for someone who is still in the thick of it. And it’s a shock that it’s us. I will definitely bring some brochures. Good idea! That will help me feel like I’m doing something. (Friends won’t even let me bring a dessert to share)
Any advice on how we explain this to our kids? They will be joining us. Since Jeff has been relatively normal since March, they have kind of forgotten anything is wrong.
I am so glad you asked this question! My mother in law has spent hundreds of dollars on alkaline supplements, cookbooks, two juicers, etc for my husband insisting it will all cure him and that the pharmaceutical industry is hiding this bit of knowledge. Thank you, Eli, for putting all the info I need in one place. It’s absolutely exhausting having to defend the inclusion of non-alkaline foods in our meals.
That is really reassuring. Thank you both! Do you think after the break they will allow him to go back on carbo-gem, or will he have to switch to something else? I am seeing a lot of talk about targeted therapies and wonder if those come next. His oncologist wasn’t aware of them until we brought them up, so she printed out a list of info on them for us.
Hi everyone, thank you so much for the inspiration! I never thought about the training at higher elevation thing equating to low red counts. But it is similar, huh? Congrats on the article, Maria. That is really cool!
As for the tissue of origin test, isn’t that what the pathologist is supposed to do? We went to Lahey and saw Dr. Jenkins and he concurred that we may never get a true diagnosis. Now we are thinking of starting over and having a whole new system review the pathology…maybe Sloan or Mayo.Hi Tiffany, my husband has gotten approval from his dr. On these: baby aspirin 1x day to reduce inflammation, fish oil to maintain weight (I think), ginger capsules for nausea, and ginseng for energy. His family keeps pushing him to take alkiline drops, but dr says they wont do anything. Instead, he juices whole lemons and pineapple cores to reduce alkilinity and inflammation. He also eats lots of broccoli. I think juicing fruits and vegetables makes him feel the best…how can a bright green drink not translate into good health? We love our juicer. Hope this helps!
Thank you for that, Marion! He would like to run a 10 k race to start–with me! But when he does run, it is hard. 2 miles is the most he gets in. His counts have been hit hard by the gemzar carbo trtmts. But Maria does still inspire him! My mom worked a booth at a marathon and met a man with pancreatic cancer who ran, and was getting a response from chemo after 5 years! Hopeful, huh?
I would LOVE to get my hands on one of these tests! My dad died of pc and now my husband is diagnosed as cc or pc. Drs say they will never know for sure unless they go in and remove the tumor (which is not an option). Do you know anything about their availability? I am heartened by all the positive developments in detecting, monitoring and treating these two cancers in the last 10 years.
