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
I am wondering if anyone has any info/experience with bile duct cysts being related to malignancies? My husband passed away from cholangiocarcinoma in October at age 42, and his mother (age 70) was just diagnosed with a rare, congenital bile duct cyst that was giving her the same problems as his cancer: cramping pain in the chest. I found this article online that says they are passed from the maternal side: http://annonc.oxfordjournals.org/conten … 4.full.pdf
In any case, we don't have any more tissue samples from my husband, but I want to be on alert for my kids' sake. Apparently symptoms of the cysts are very common in childhood.
I am curious to find out if anyone knows anything about this or had this happen in their family?
We benefited so much from the collective wisdom and encouragement of this group! Thank you moderators and community members. I don't know how Jeff could have made it out if his first bad spell almost 2 years ago without someone here sharing their success story with megace for appetite. And that is only the beginning. We were inspired by you all to be hopeful even when doctors told him to get his affairs in order over and over again. Living well with CC for almost two years is pretty damn good. He was only 42. He ran his last 10k this August, 2 days after getting cisplatin and probably with a belly full of acites.
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.
Hi everyone! I emailed Maria this past summer, and she responded to my questions. She's definitely missed. She is such a beacon of hope.
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!
Hello again -- My husband is 42 and has extra hepatic CCA. He has gone through 3 different types of chemo, and his doctor is now recommending that he talk with a researcher who does phase 1 trials. I talked to someone there, and they basically said in phase 1 we are doing more for science than ourselves. And he said it will be time consuming and costly, and we'd have to travel all the way to Boston several days a week. That's not an option for us. Are there other treatments that I should ask about? Here's what we've done so far:
1. Gem/Cis & Gem/Carbo
Thanks for your help!
Topic: Has anyone heard of Dr. James Cleary @ Dana Farber? (1 replies, posted in General Discussion)
My husband's oncologist has suggested we get in touch with him to talk about clinical trials. From what I read on their site, his specialty is phase 1 targeted therapies. I'm going to call his office tomorrow, but wondering what I should be asking? We are reaching a point where we need to find a new treatment. Do we want to talk with someone who does Phase 1 trials? I feel like my husband is pretty healthy, so we should stick with Phase 2. Any advice?
This is what we've done so far:
1) Gem/Cis (stopped after 1 cycle because of severe effects)
2) Gem/Carbo (stopped bc CA 19-9 went up)
3) Folfox (stopped bc CA 19-9 went up/never went down)
4) Gem/Abraxane (CA 19-9 starting to go up)
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
Topic: TH-302, or What I learned by reading The Motley Fool (4 replies, posted in Clinical Trials)
As I've mentioned before, my husband has extrahepatic CCA or possibly pancreatic cancer. Pathologists and his doctors have been unable to make a final diagnosis. We can't see any tumors on his CT scans, only enlarged lymph nodes. Because of this, his doctor frequently looks for treatments and trials for pancreatic cancer. Right now, my husband is receiving gemzar and Abraxane, and it's working pretty well. However, we don't have our next option lined up. His oncologist would like to try a targeted therapy, and in particular would love to get us into a B-Raf trial but hasn't been able to find one that is currently recruiting for either type of cancer.
I hate not having a good plan, so I've been searching, too. Tonight, I stumbled on this fascinating article for investors about pancreatic cancer research and which drugs have the potential to blow the disease out of the water (and make a ton of $).
http://www.fool.com/investing/general/2 … rrent.aspx
I was happy to see Abraxane listed as a top choice, but I had never heard of TH-302. There is a trial near us in New England, so we are going to ask our onc what he thinks about it as a potential next step. Wondering if any of the experts on this board have heard of TH-302 and its potential for helping CCA? Thanks so much!
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.
That is the trial that excluded him bc of stent and risk of inflection
Re: Clinical trial specifically for advanced cholangiocarcinoma (5 replies, posted in General Discussion)
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/ … amp;rank=4
Hi 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!
My husband has distal bile duct cancer with lymph node involvement and abdominal mets. He is a one year survivor. We have never gotten 100% assurance that it isnt pancreatic so his doctor likes to try treatments for either disease. On Folfox, his markers went up. After one round of gemzar-Abraxane, they were down by more than half. Just wanted to share the good news. Celgene had good results with a trial of Abraxane and gemzar. He is having a CT scan this week and will hopefully have shrinking lymph nodes. We could use good news. Abraxane makes you lose your hair!
Re: Need advice on how to accept help from friends (6 replies, posted in General Discussion)
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.
Topic: Need advice on how to accept help from friends (6 replies, posted in General Discussion)
Hi Everyone, we are fortunate to live in a wonderful neighborhood with many supportive friends. Each family has gone out of their way to help us financially, emotionally, and with food since my husband's diagnosis in January. We are deeply humbled by their love and generosity, and they have helped us keep our life as normal as possible for our kids. Now they have asked us if they can have a fundraiser dinner for us. We want to be good receivers, and we know how much they want to help us out, so we said yes. But, of course, we are soooo uncomfortable with people giving us money. We are doing ok despite reduced pay, etc. Though, who knows what other major expense could catch us by surprise? We could use some advice on how to accept/receive this wonderful gift and should we go to the dinner or make other plans?
P.S. My husband is doing well, switched to Folfox two weeks ago, and he is going back to work part-time soon.
Hello, although my husband was diagnosed in January, we have only recently been enlightened to the idea of getting a 2d opinion on his pathology by a specialist in GI pathology. We were never given a definitive diagnosis...just adenocarcinoma, prob. cca. So, I have been googling around and thought I would send his slides to either Sloan Kettering or University of Pittsburgh GI Pathology Center of Excellence. Original pathology was done locally in Maine & also at the New England Mayo lab. Does anyone have a recommendation on a pathologist? Thanks for your help!
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.
We have reached the crossroads in my husband's treatment, so I thought I would drop in to ask for everyone's advice. As a refresher, he is 41 and was diagnosed 7 months ago wtih extra hepatic cc, with mets in his peritoneum and in his lymph nodes. He is stage 4 and not a candidate for surgery because of the mets. He has been through 1 cycle of cisplatin/gemzar, which changed to carboplatin/gemzar after that because of the nausea. He has had 6 cycles of the latter. Over these months, his CA 19-9 has gone from the 700s to the 30s (in the normal range!) and he has tolerated his chemo very well; the only side effects are his platelets and white blood counts being very low. Today we went in to start cycle 7 and he was denied because his platelets were at 48 and need to be at 100. We are going back in on Friday to see if his platelets rebounded and to get him another dose, but the oncologist suggested that it might be time to take a break because his bone marrow has been hit so hard.
So here's my question: is it wise to take a break? We feel like everything is going so well with his treatment that we don't want to stop now and risk giving the tumor a chance to grow. In his CT scans, no one has been able to see his tumors only the enlarged lymph nodes, and those have never changed size so it's unclear exactly what is happening in him. We are just relying on his good health and his CA 19-9.
What have others done in this situation? Is this the time to get a 2nd opinion?
Re: after 5 months, drs still not 100% sure it is cca (8 replies, posted in General Discussion)
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.
Re: Want to start supplements. (7 replies, posted in Complementary & Alternative Treatments - CAM)
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!
Re: after 5 months, drs still not 100% sure it is cca (8 replies, posted in General Discussion)
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?
Topic: after 5 months, drs still not 100% sure it is cca (8 replies, posted in General Discussion)
Has this happened to anyone else? Every dr we see says my husbands cancer could be either cca or pancreatic. The biopsies can only tell that it is adenocarcinoma. There is tumor that has been seen in his distal bile duct, but no tumor visible anywhere else. The vein to his liver has some compression, which apparently is more of a pan can thing. Drs
say chemo is working, so just keep it up. And we may never know exactly what he is fighting. Weird, huh?