July 19, 2006 at 2:02 pm #14435jaimieMember
Thanks for all the information and I know that every case will be a little different. I have filled out the patient profile, however because he has not done any treatment as of yet I did not fill out much. I will add to it as soon as I know more. I am glad that this site exists, it is a wonderful resource.July 19, 2006 at 12:03 pm #14434alisonParticipant
Hi I am Jon,s wife , not sure if you have seen his posts or profile . He was dignosed in March this year , a total shock to us both as I am sure you all know. He is having Gemcitabine at present , has another 2 cycles to go . We are concerned what will happen next and have found some valuable info on this site . We have looked into RFA and other drug therapies . As with you jaime and mybros sis , it is hard to know how to help , but all I can suggest to you from my 3 months experience is to just be there to listen and help when needed, but also give him his own space , something I admit I find hard to do !! as Jon will tell you . I have found that living in England the drug therapy is limited by NICE and that there is some reluctance to operate , but we are still hoping to look into other optionsJuly 19, 2006 at 11:59 am #14433mels803Participant
My brother is dealing with this and, although I know everyone deals differently, I’ve got to say that he is handling it way better than I ever could have imagined. You read all of the side effects of the drug(s) and think that it’s going to be absolutely terrible, but just know that those are all worst-case scenarios. Chris, my brother, has been able to go back to work and has generally been feeling better now than he did before starting treatment. He lost a lot of weight at first, but we all think that it’s because the fluid in his abdomen has gone down. He’s seemed to level off and at least he now has an appetite (which he did not for a while – a really tough thing for a family of big, Italian eaters!) Just try to take it one day at a time and do know that there is a real possibility that it will not be as bad as you fear.
By the way, the e-mail address that I posted earlier has been disconnected. You can feel free to e-mail me at email@example.com. (I’m only 28, too… my bro went into the hospital on the night of my law school graduation… it’s so shocking.)
– MelissaJuly 19, 2006 at 12:26 am #14432stacieMember
I’m sure you’ll get a lot of posts in answer to your question. Everyone’s experience with chemo seems to be a little different. While most of the pamphlets we read about chemo suggested that there were certain patterns, this has not been Mark’s experience and perhaps one of the more difficult things to deal with during this whole process (the fact that what happened the time before doesn’t seem to suggest – at least for him – what is going to happen the next time. I think some of this comes from mixing chemos and different therapies.
If you have an oncologist who because of your boyfriends age is going to treat this cancer aggressively then you are looking at a bit of uncertainty as to what to expect because some of the mixes are not well tested or documented as far as side effects when mixed.
One of the things that has been really helpful is hydration, keep him well hydrated and don’t be afraid to go in and get some extra fluids if he is not getting enough. I am not speaking only of my brother but of several other young cholangio patients we have been in contact with as well, this has been one very helpful thing.
There are many other things but I’m sure some of the other caregivers on the website will want to add.
Good luck and gather as much information as you possibly can so that your oncologist knows that you are ready for battle.
StacieJuly 18, 2006 at 7:00 pm #14431jaimieMember
Hi All….this is going to sound cofusing but I am MyBro’sSis’s brothers girlfriend and as she has posted previously just yesterday we saw the oncologist and chemotherapy has been booked to start next week. David lives with me and I was wondering if someone could provide me with some information as to what to expect while he is undergoing chemo. We got tons of booklets yesterday but it would be nice to have some first hand advice. I want to know what I can do to help him. Although this whole process has gone extremely fast, it seems like an eternity. I want to be there for him through this and I want to be able to help him as much as I can. I never thought that at the age of 28 I would have to go through all of this but the whole experience makes me stronger everyday.July 18, 2006 at 1:48 pm #14430stacieMember
I want to agree with the previous posts that you are in a good position if your brother was considered a surgical candidate. Now, the crucial thing for him becomes the systemic treatment with chemo.
However, you need to give another try to get a combination chemo for him. Your best bet will be to combine gemcitabine with 5FU/Xeloda (same drug administered differently) or one of the platins (Carboplatin, Cisplatin or Oxaliplatin) there is a lot of information and studies on these drugs. Start pulling them up and work with your insurance or oncologist now to get him on some kind of combination of drugs, he will have a much better result if your oncologist will do this.July 18, 2006 at 12:50 pm #14429txgalMember
My father is also stage 4. He was just on gemcitabine with xeloda. It did not affect the tumor at all. In fact it grew. The first time he was on chemo, he had CPT-11, Xeloda, and Epirubison. That put him in remission for a year.
I do know a lady who is on Gemcitabine with oxyplatin and is having success. I think it needs to be a combo thing. I understand you have health care issues there, but you might at least ask for them to combine with something. Good luck.July 18, 2006 at 2:34 am #14428
Hi again I thought that I would let you know that David saw the onc. today….after my Mother called and DEMANDED something be done. He will start on the Gemcitabine in a week, after he has his stint replaced, we are excited to get the ball rolling.
They will montior things and see and then apply for coverage for others if this doesn’t work…I hope that that is not the case but reality is we may need to look at that.
Being that we are in Canada all of this is covered by our health system it is just that we have to apply for any of the other things that you all refer to as clinical trials… they really don’t do any here.
Thanks so much for all of the feedback that you have given it has been great, we have written down all of the drugs and went armed with all of our info the the clinic today…Good stories are great to here….
And I guess we all just have to have HOPE….July 17, 2006 at 1:24 pm #14427thereisnosantaMember
My sister is 52 and was diagnosed with cholangiocarcinoma in November of 2005. Not only did she have a tumor in her liver, she has 40 tumors on her lungs. She has taken the general chemo and was also in a trial for new chemos. The first round did nothing at all. After the new trial chemo, the tumors grew twice their original size. She is now is Hospice care in Nashville, TN and has hours to live. It has been a short but brutal battle.July 16, 2006 at 8:09 pm #14426julesParticipant
sometimes it takes a while for everything to settle down after the surgery – if your brother has had surgery then he has real hope, surgery can be curative for about 50% of people undergoing a resection, you could ask whether the surgeon was able to get good clear margins, you can’t be sure that the jaundice means that some cancer remains and it is too early for cancer to come back. chemo will be your insurance, as long as the incision is healing okay and your brother is mobile and able to eat reasonably then he should be able to start chemo soon, i would advise you to start looking into chemo options now so you are informed for when you speak to the oncologist, there is an excellent chemo worksheet on this site and different people on this site are on different combinations with varying degrees of success.
i am sorry that you are facing this, your brother is so young, you have come to the right place, this site is a great source of info and support.
JulesJuly 16, 2006 at 8:06 pm #14425mels803Participant
I just wanted to say hello and let you know that I really feel for you. My little bro was also diagnosed just about 1.5 months ago with stage 4 CC. He’s oonly 25, so we were all just totally shocked. He’s been having some success with a clinical trial of Gemcitabine, Oxaliplatin and Avastin at Dana Farber in Boston. I can only say that he’s been feeling better – we don’t yet know whether the tumors have shrunk, etc. as he will not be having second CT/PET scans until August. I just have a terribly helpless feeling, as I’m sure you do, as well. Just know that you’re not alone and try to keep your chin up! Please feel free to e-mail me at firstname.lastname@example.org and I can share with you all that I know, which, admittedly, is not that much.
– MelissaJuly 16, 2006 at 3:53 pm #14424
Thanks for the info
Yes his billirubin is up or what ever it is not supposed to be. He had surgury they took a portion of his liver and since then all we have done is wait. He has not started with any Chemo as he is just 3 weeks post surgury and we have not seen an onc. as of yet.
It is the worst wait we have ever had, thanks for your info, LisaJuly 16, 2006 at 8:32 am #14423julesParticipant
hi, I understand your desperation, my Dad is battling this beast too.
You mention that your brother had surgery, did he have a liver resection? or was it a bypass? how long ago was the surgery? – it takes a while for things to settle down post op.. is your brothers bilirubin level raised? has your brother had any chemo or radiation?
sorry for all the questions but it is difficult to advise without some more info really.. you must not give up hope. There are treatments available to fight this beast its just a question of finding an onc who is a bit more dynamic and progressive and willing to give your brother some of the newer breakthrough treatments, so many people will just tell you that if you have cc it is hopeless, that there has not been enough research into the disease – my dad had a resection and now has a recurrance, he is currently on chemo and we have options lined up if this does not work for us. Cancer vaccines are showing real promise (see my posting under clinical trials). You will come across people on this site and elsewhere who have held the disease stable on chemo, managing it like a chronic disease (like diabetes or heart disease) my Dad is taking gemcitabine and carboplatin which is well tolerated. The disease can be held stable for many months and even years, reasearch is moving fast at the moment, new treatments are coming along all the time.
Take care, keep strong, JulesJuly 16, 2006 at 2:07 am #184
Hi I am trying to get any information people may have on alternative treatments for this disease. My brother is Stage 4 and not doing really well at all this has all happened so fast. He has had surgery and has once againstarted to become jaundiced althought his stint is clear?? We are desperate and willing to do anything that we can do…I should meation that he is only 36. Being in Canada and in particular Saskatchewan we have little to hope for except the typical treatments that we feel we want to save until we have to…???? Any info would be great!!
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