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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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My husband was diagnosed at the same time, he is 33. We have a 3 yr old and 16 month old. I also had to take over running our 2 businesses and our finances. I would much rather be a stay at home mom, but life more often than not doesn't turn out the way we plan :-) You can do it! Do you have a support system? If so RELY on them! It will be the only way to keep your sanity. Do not be afraid to ask for help and accept it when offered.
Also we go to Mayo clinic in Rochester, MN. I HIGHLY recommend them. We looked into treatment closer to home (MI) but the doctors here held out NO HOPE for us, while the Dr's at Mayo are doing everything they can to extend and keep a high quality of life for my husband. Hope is a very important attitude to have and you need to surround yourself with people and Dr's who believe that he can beat this thing.
Thank you all for the good wishes and to Kathy for posting the link to my caringbridge for an advanced update. It looks like the swelling that was seen on the CT scan is most likely not a growth of the cancer and there is no mechanical blockages anywhere. So that is good news. My tumor marker is still high, but it is the lowest it has been since - well it is the lowest we have ever seen it.
So that is all very encouraging. I am still dealing with some ascites and there are mixed feelings on whether or not it is cancer related and how to treat it. I certainly hope that it will resolve soon and that it is not a sign of advancing peritoneal cancers. There are mixed opinions on all of that.
Thank you again for all of your support. I continue to wish you the best in your own struggles.
I'm inpatient at Mayo right now. Had a CT scan which showed some "swelling" in the duodenum and then an ERCP to replace stents. During the ERCP, it was found that the so called swelling is likely all new peritoneal cancer which is substantial. All other areas showed stability, except for this. And my tumor markers were way down. So we are a little bit confused. But, this is bad news.
It would mean that the peritoneal mets are advancing quickly. And they are starting to cause nutritional problems because of nausea and vomiting. This means I will probably need a feeding tube and gastrostomy vent put in. More importantly it would mean that Gem/Cis is not working and that this cancer is highly active and moving quickly.
I'm not sure what to expect. We will get more news and clarification tomorrow. I just hope there is some other explanation. My poor wife is here with me and alone while I was in recovery after hearing the news from the Dr. I feel so badly for her. I wish some family was here for her!!
Please pray for us. It is a very difficult time.
I had an appointment last week and my Onc was concerned about the exam he did on my abdomen. He thinks I am developing Ascites and that with my peritoneal cancer that is not a good sign. On top of that, my pain has really increased over the last few weeks. I can't "see" the ascites buildup so it must not be too bad yet, but I can feel some pressure. If things get too much worse, ONC wants to have the fluid drained. It just seems that when people get to this point it is only a matter of a little time. At the same time, my tumor markers are dropping quickly which leads me to think that my chemo may be working (Gem/Cis) at least on something to cause the marker to go down in half.
There is so much to do in the 1st quarter of this year and I don't want to push myself too much - but I want to get these things for business and home done asap so I don't have to deal with it if/when things are worse. Or - to leave them for my family to deal with.
Just feeling a little bit down and hoping that this is some kind of a fluke and I'm not really deteriorating. But I feel like something isn't quite right. I wish I "knew." And the string of bad news lately here doesn't help things either!
It seems like I have been reading a lot of stories lately where a patient seems to be going along a stable path with their CC and then all of a sudden they pass without much warning. Is this common? I just don't read a lot of stories where patients have a month or 2 of warning.
It is a little bit disheartening to know that it could strike at any time without warning. There is so much to do yet!
She will be sorely missed by many. Rest in peace, Kris. My sympathies to Hans and all of her family and friends.
Some of you may remember Leo Langheim. He posted here a few times throughout the year.
His story is that he underwent the Mayo protocol and was transplanted on Oct 11, 2009 at the University of Wisconsin (Madison). After about 3 months, there was a recurrance or possible the development of a cancer that was too small to see in workups. Apparently this was never brought under control and took over. The heavy auto-immune drugs that one takes after a transplant probably contributed to this. According to his facebook page, he passed away around November 25.
My condolences go out to his wife Christi, son Henry, and to all of his family and friends. He was a great guy that I got to know through several common areas.
He gave it all his best and made all of the right choices, but it just was not meant to be. Rest in peace my friend.
My deepest sympathies to you and your family. I pray that God will comfort all of you at this time.
Hi Marions - unfortunately, no, my symptoms have not really subsided much yet. I was hoping with the new chemo regiment that would help, but it now seems like my stents might be clogged because my bilirubin jumped and chemo was cancelled yesterday until that is figured out. I'll post more on that in a differnent post in awhile. I'm not feeling so great today so just kind of taking things easy.
I've met with Dr. Rubin a few times and I understand how you feel about him. He gives you the hard truth, but it is hard to read between the lines. Especially if you haven't had any tests done at Mayo. He really likes the tests to be done there. Since I am a Mayo patient, I think he may have been a little bit more accomodating since he could order tests if needed, see my history in their system, and talk to my other physicians. But I certainly do understand how you feel about him. I think he is a very talented Dr. but at the same time I feel like I want to tell him off for not taking charge in the case.
Perhaps he just needs a little bit of a nicer bedside manner.
As both a PSC and a CCA patient, I would say that no screening is too much. The risks are very high. At the very least, you should have the bi-annual bloodwork done as well as periodic MRCP's and anything else you can think of. If the bloodwork isn't accurate, is it possible that it will be accurate if cancer were present? It's a hard decision to make, but I would say the more effort you put into screening the better. If I had proper screening I may have been able to qualify for curative treatment, so this is something I feel very strongly about.
Good luck to you.
I know Kris is out there struggling away in a hospital and just wondered if anyone has heard from you. We are praying for you and hoping for a good outcome Kris. I wish there was more I could do for you. Keep your chin up.
I cannot agree more with some of the above. Granted every cuase needs a voice - it just frustrates me to no end that our voice is so weak and every time I see a pick ribbon it just bothers me to think that breast cancer is the absolute worst.
I've been following this posting so thank you for keeping it up. I start Gem/Cis today. Leaving in about 20 mintues to be exact. I am of course very uneasy about it hearing about the harsh side effects but I am hoping for the very best. THanks for your previous works here. I'll try to add where I can see fit.
Wish me the best of luck!
Just a quick update here as we are ready to head out. Things aren't going very well. Ascites is getting worse. I'm not able to enjoy the trip as much as I'd like. And my wife is getting frustrated with me as the ascites is both bothering me and causing some amonia buildup which in turn is causing a little bit of confusion.
I wasn't sure when I booked this trip if it would be one of our last big trips together as husband and wife so I was praying very hard that it would be a good one. So far, it hasn't been super great. Only a day left - I hope it gets better fast!
So sorry to hear about Kristin. It is strange how this can happen so fast and unexpectedly in some instances! My heart goes out to you Kevin and I wish there was something I could say or do.
I am currently in the Bahama's on our dream trip to Atlantis, but my wife has told me that I scared her yesterday and sort of ruined the trip due to some as I have had some unexplainded dellusionalism. It is really strange. I found myself preparing for things that I know now did not need to be done. It really scared her. And - I have a new buildup of ascites which is scary for me and I realize that this could be causing the symptoms such as buildup of amonia - But I never thought it could happen this fast!
Sorry - I didn't mean to hyjack your thread. I'll create a new one.
You and Kristin are in our prayers. You are very special peole here and Kistrin will be missed by many people. If there is anything practical that we could do to help, pleaes let us know!!
I have had some time to reflect more upon the news from this latest trip to Mayo. Overall, I have to say that I'm a little bit upset yet. I can't seem to shake the bad news of advancing cancer in the peritoneum and the slight buildup of ascites. Although I did have some ascites at my original diagnosis a year ago, it quickly went away with chemo. Now I am back at the same point and it really frightens me that it has returned. Normally ascites is a poor prognostic sign and often indicates that the end is nearing. I can't seem to shake that, even though I know that the upcoming Gem/Cis chemo treatment might help bring it back under control. I hope. I pray. I plead!
So, I guess this is a rant of a post. I can only wait and see what happens after chemo starts back up but it sure would be nice to have some more evidence now. I leave for our much anticipated vacation to Atlantis on Thursday and I want desperately to enjoy my time there with my wife so I really need to kick this depressed mood to the curb. I lost a few good days to it already I'll be damned if I let it tarnish a vacation of a lifetime. My wife deserves so much more than that.
I wish I could learn better from so many of you here who have battled adversity and still have been able to enjoy yourselves and your special times. Maybe my funk is going to be short lived and I just haven't had enough time to process it all, who knows. Blah!
Thanks for letting me rant on. If any of you have positive experiences with ascites resolving itself or with chemo, please forward that to me. I could use some positive stories!
You are such a great caregiver to T, and a great friend to us here. I wish that this was a better season in your lives, but I am continually amazed at how well you both seem to be handling things. I can only hope that as my time nears I will handle things as well as the two of you have and that my wife will be able to have the peace that you seem to have now. You both continue to be in my prayers for this phase in your lives and although I don't know exactly what to pray for, I just ask that all of your needs are met and that you find the peace and comfort that you deserve right now.
Thank you for keeping us up to date.
Now I have some more hard evidence of how the treatment has worked for me. The primary tumor in the liver is showing signs of necrosis. It has stayed about the same size, but it is less defined on imaging and not as dense. All of this adds up to a successful theraspheres treatment. Apparently, it will take several more months for all of the results of treatment to be visible but as of now it looks like it is inducing tumor death. I am hoping that it will kill of the whole thing or at least most of it and we should know that after my next scan in 3 months.
Now on to the other news of my appointments at Mayo this week. I had a stent change and that went well. My billirubin was creeping up a little bit because the stents were getting blocked and it should now resolve itself. The not so good news is that the Oncologist that I met with here believes that the cancer in the peritoneum is growing/spreading. Not a lot, but it is gaining steam. There was some evidence of this on the CT scan and some of it he is using other evidence to draw the conclusion. I was not thrilled to hear this.
My chemo regiment of Xeloda is going to get changed out. It was causing too much diarrhea, dehydration, etc. and combine that with the fact that the peritoneal cancer might be advancing and it is time for a treatment change. They are recommending Gemzar/Cisplatin. I was on Gemzar/Oxaliplatin last year and developped a reaction to the Oxali so I had to discontinue it, but it was working. I've heard that the Cisplatin is quite a harsh drug (more harsh than Oxali) so I am not looking forward to this new regiment. I am hopeful that it will be effective as it is for so many others but I am really dreading getting started with it. Right now I'm able to work a bit and feel a little bit productive and I'm concerned that starting this therapy is going to rob that from me. But nonetheless I will be getting started with it after I return from the vacation my wife and I are taking next week. If any of you have any experiences you wish to share about Gem/Cis, please feel free!!
The last piece of news from my visit to Mayo is that I also have a little bit of ascites buildup next to my liver/gallbladder. It isn't a significant amount, but it is there. I'm really concerned about this because it backs up the theory of peritoneal cancer growth and I really don't want to deal with it. So I hope that it will resolve on its' own - or at least it will resolve with chemo or diuretics.
I had radioembolization at Mayo, but I had the Therasperes instead of Sir-spheres. They use both, but they are extremely similar. You can pull up my thread and read my experience. I'm about 2 months post procedure now. There were some difficulties with it, but I'm still hopefull it was effective. I will know when I have my followup scan in a few weeks.
I had insurance pre-approve the treatment which was a tricky process. I still went in to the procedure not know exactly what would be my portion of the expense. The total treatment, including planning angiogram, the spheres, and the treatment itself plus all of the other testing was around $95,000.00 at Mayo. It was not cheap. But luckily insurance did pay for most of it for me.
Best of luck to you.
I do have cancer to the peritoneum. Mine is mostly in the area of the omentum. Originally there was a little bit of ascites, but after chemotherapy started the ascites has completely resolved. I'm happy to resort that the peritoneal cancers appears to have regressed - although there is no easy way to confirm this. Usually chemo is the best way to deal with ascites. Beyond that diuretics have been known to help and a draining/parecentisis is usually the last line of treatment.
I can't speak to the blood clots, but wish you the best of luck with that!
Keep up the hope. I know it can be frustrating at times. There was a point that I thought I was going to pass very quickly (sometimes I still have these pitty parties) but I guess I am doing on physically.
Best of luck you to you.
Feel relatively normal now. Actually, I think I feel a little bit better in the RUQ area where that primary tumor is located. I made appointments for my followup afte the TS treatment. They are September 29 and 30 - so just 19 days from now I should know a lot more about the effectiveness of the treatment. My gut instinct is that the TS treatment was very effective with the primary tumor. I think that I'll probably not need to have another treatment to keep that under control. However, I am slightly concerned about the metastases to the peritoneum. I've had some issues recently with nausea and dehydration - but those could be related to a number of things including the chemotherapy that I am still taking!
I did wind up in the ER again last weekend to get rehydrated and for pain contol. I still find that I have a lot of pain in my belly area which is probably from the peritoneal cancer and also some in the Lower RUQ probably from my distended and diseased gallbladder.
I am taking a new medication called Sandostatin which is an injection that I give to myself twice a day. it is supposed to help with the crazy diarrhea tha I have been having. I hope it works.
I guess that is about it for the update. I'm anxious to give you the full scoop after my Mayo appointment and scans. Please keep yoru fingers crossed and keep praying for great results!
It is good to hear from you. I've been following your CB site and glad to hear that things have been moving along for Josh. Sorry to hear about the complications - but glad they are only temporary.
The stent changes should be a piece of cake. I've had quite a few ERCP's and stent changes in my time. A few times I've had minor cholangitis afterwards but a quick script for Cipro took care of them. I can understand your terror after Josh's last experience but keep in mind that once the sphincter has been cut, it doesn't need to be done again. His risk of bleeding for just a stent change is MUCH smaller and given his history they will probably take preventative measures with meds and could even do blood tests to measure clotting beforehand.
We are praying for you and hoping that chemo/radiation does its' job and that the EUS and staging surgery come back looking good so he can move forward with a transplant. You are on a path for the very BEST possibility of a cure. I'm sure you're aware of the rates, but we were told about 80-85% 5 year survival and very similar cure rates.
Thank you for the frequent CB updates. Please keep them coming.
Sorry you had to find us, but very glad to hear that surgery is an option for you. That is the very best chance you have at beating this cancer is with surgery. And the Mayo Clinic is the very best place to be, IMO.
You are not alone in your age and life circumstances. This cancer does strike younger people also. There are many here who were diagnosed with this cancer in their 30's or younger. I am 33 now and have been battling this cancer for a little more than a year now. I am also married and have 2 children. My family is the absolute best and I fight as hard as I can for them. My wife was about 5 months pregnant with our 2nd child when I was diagnosed with this cancer, so I can relate to that feeling.
The best advice that I can offer you is to have a positive attitude, learn to accept that you will have limitations as you prepare for and recover from the surgery (and any chemo or other treatments afterwards?), and accept all of the help that people offer to you.
You will be in my prayers for a very successful surgery and that you will be one of the people that beat this cancer!
We found out today that the radioembolization/Theraspheres could very much have caused the increrase in the tumor marker. Cell death plus any kind of biliary irritation can cause the numers to shoot up and I probably have contributors from both.
So - today I had a followup CA 19-9 and we will determine whee to go from here. If it has gone back down, great. If not, then we'll watch it for a little bit longer before digging deeper into the cause.
But all things considered, I'm convinced enough that it is from the Theraspheres treatment that I'm not going to freak out about it anymore.
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