Update From Irene in NH
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Irene,
I think Janet is right, you need to know all sides. In our case my husband decllined so rapidly after diagnosis that chemo wasn’t even an option because he was already too weak and compromised. Until then he lived a healthy, normal life, so based on our experience, I believe in quality over quantity of time. That said, everyone is different and no two cases can be treated or result in the same way. I think you know your body and life better than anyone else and ultimately to treat or not to treat is your decision to make. Thinking of you and hoping for the best for you what ever you decide to do.
Love & Hugs,
DarlaI just wanted to add that chemo does have a low success rate and is not a cure,but there is no real control so you dont know how things would have been without it,particularly for those with no symptoms.I regret that my husband had chemo,it made things worse.Sorry but I think it best if all sides are shown Janet
Of course some people have good results but a large number dontHi All,
I appreciate all of your replies, ALL of them.
I don’t know what I will do, but I do know that for whatever time I have, the folks on this board have been an immense source of support and have even helped a little when I’ve felt like the most lonely person in the universe.
Peace to all of us. Even me.
IreneDear Irene – I’m so sorry you’re having such a rough time. My sister is on Gemcitabine & Cisplatin & neither of us has asked for a timescale. She’s had bad times on the regime – but overall she’s doing very well & we both believe her QOL is massively enhanced with it, rather than without. Of course, I have no idea what I would do if I were in her position, but I genuinely believe I’d choose the same as she has & go the chemo route.
I do NOT think renewing your magazine subscriptions was a bad idea; in fact I think you should keep up a rolling renewal because there is NO set expiration date. If there’s anything I’ve learned from this site (& I’ve learned a lot here) it’s that!!
Keep coming back & telling us how you’re getting on – & if you ever work out what you want to be when you grow up, please tell me … because I’m older than you & I have NO idea!!!
Julia x
There is someone who I exchanged emails with you had their cancer wrapped around their portal vein. They did get treatment and all their test results are great two years later. Here is her email. Maybe you can chat with her. debrahdci@aol.com. Chemo is the way to go. Even for people who said they were told they didn’t need it due to clear margins after surgery, it came back and people who get the chemo as a safety net seem to come out ok for the years to follow surgery. I have read on this site, many doctors who tell peple NO OPTIONS but after other opinions they just go for broke or find someone who will try something. You have nothing to lose but my gain time. I love the humor in your writting, I have said to my husband, we made a deal, if we ever split up YOU get the kids and he has CC and the future is unknown and OMgosh, I could be stuck with the kids ! haha Stay positive, be optimistic, live each day to the fullest. Someone on this site once said to not be stupid, for lack of better words.. and it means, shoot, my husband just may not make the 5 year mark and I have to know that it is a possibility and not ignore the facts. I too believe that none of this is God’s doing nor do I believe God is going to heal anyone, what I do believe and what I have seen is how God uses people for good. My husband, through this cancer and his faith, have touched so many people that God would be proud of him and he is an example to everyone around him to live for God and you know what, when he goes to heaven, I will know he is loving it.
I have had chemo for 15 months, first with gem/xeloda and now with gem/oxalyplatin. I have never been sick from the infusion and have outlived their prediction for me. I suggest trying the chemo. You can always stop it at anytime.
Hi Rowena,
Here are some links regarding PDT, I hope some of them may help explain it all. This one is my first post here and I talk about my dads PDT treatment-
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
http://en.wikipedia.org/wiki/Photodynamic_therapy
If there is anything specific that you want to ask me about my dads experiences with PDT then please just ask and I will help as best I can.
Best wishes,
Gavin
Hi, Irene,
Like you, I haven’t posted for awhile but I have been keeping up on the discussions. I was diagnosed in July, 09 with bile duct cancer and had a stent put it to open the duct. I finished my first round of Chemo and radiation the first of November. With the help of this board, I looked for a doctor who I thought had more experience with this cancer. I have consulted with others and each have told me that they would take a break and watch to see what happens. I have had a blood test every month and the CA-19 count went down some each month, except this time. It jumped from 1525 to 4074. I will talk to my doctor, hopefully, Monday, and she will order a CT scan and I will probably be back on chemo before the end of the month. I have had all the radiation I can have, so now it will be up to the chemo to keep it from growing. I know chemo will not cure it, but if it will keep it from growing, I will try it for awhile. It was so nice not having any treatments for four months, so I can understand Irenea’s thinking. But when my blood test came back this time, I know I have to try something to stop it if I can. I know you will make the right decision for you. I don’t know what PDT, so Gavin could you tell me.
RowenaHi Irene,
I am sorry to hear that your scans yesterday did not show better results for you and that you are having these other symptoms that you talk of.
When my dad was diagnosed with his CC, we were told that it was similar to yours in that it was wrapped around the portal vein so that ruled out surgery or radiation for my dad. We had discussions with my dads doctor about treatment and the quailty of life issue you bring up was part of these discussions. My dads doctor wanted dad to have PDT and perhaps try chemo at a later date. Quality of life was important for dad and his doctor thought that PDT would be much easier on his body as it is a far less invasive treatment than chemo is.
I know that PDT is not that common a treatment for CC in the USA, but perhaps it is something that you could speak with your doctors about. My dad never had any chemo so I can’t talk about that. I wish there was something more that I could say that might help you. I don’t know if my dads experiences will help you or not, but I just wanted to share them with you.
My best wishes to you,
Gavin
Hi Irene
I am so glad to see you posting but sorry about the pain and other symptoms that you are suffering from.As you know, I have chosen to have chemo and i really think that it has helped me live longer than I otherwise would have. But no one can make that decision for you. This latest regimen that I am on is horrible, but I kind of put mind over matter and know that feeling sick only lasts one week, then I feel better for 2 weeks.
Giving you my best thoughts and prayers {{{hugs!}}}
Irene,
I dont know what to say actually. I have never asked my doctor for a time frame and I never will. I have planned for the end so it is mostly taken care of. I dont think I am strong enough emotionally to know what the doctors “think”…because we all know that they dont “know” as you proved them wrong so far already.I think I would start chemo too if I were you. I am on Gemzar and cisplatin and for the most part, it is easy peasy except that it takes so long to get the infusion. I havent had great success with it, though for the most part I am stable.
You might also want to look at drug trials.
Wishing you the best of luck. Oh, I havent decided what I want to be when I grow up either.
Hugs,
KrisIrene, may I first say I LOVE the way you write. What an attitude and that is a big part of the fight. To be perfectly honest and I feel that’s what you want, at this point if it was me I would try some chemo. I would also get a second opinion. No one can give you an expiration date and everything seems to work so differently for everyone. The only thing we know for sure about CC is that we know not much. You have youth on your side and if some chemo would hold it at bay you know there are new things being discovered all the time. If you started chemo and in say 3-5 months checked that tumor again and saw it was doing nothing you can still drop the chemo. Not everyone gets ill with chemo. Where do you hail from? Good to hear from you and please keep us posted.
Look. No offense, and I know faith is a comfort to many people here, but I do not believe that this horrible disease is any part of God’s plan.
Hi Irene.. Yes 45 is young, but I’m sure you have live as you wanted to… All I can suggest is hang in there.. Be Strong.. God has a plan… Rely on him..
Hi All,
I know I don’t post much, but I do check in all the time. I keep up with you folks, especially Lisa and Sophie. Sorry in advance for this long post!
Anyway. Had my own follow-up appointment yesterday. Wanted to let folks know what was going on, and also ask opinions from those of you who, unfortunately, have all the experience with these disease.
As a brief recap: I am now 45 years old. Diagnosed when I was 43; it was an incidental finding. I was having no symptoms. Had failed surgery to remove the tumor (which is in the liver) in 9/08. Have declined chemo and radiation not appropriate given tumor location (wrapped around portal vein.) Docs said in 9/09 that I had a year to live. The year came and went.
Have had follow-up scans every few months. Primary tumor when first seen was about 6.5 cm. Stayed relatively steady as of summer of 09. In summer of 09 a second tumor was found in liver, but it was very tiny and was well-located (relatively speaking, of course) because it is near no vessels or veins.
Having increased symptoms for sure — extreme fatigue, digestive problems, constipation, consistent stomach and back pain. But really, have been in good shape overall. Even went to Las Vegas last month! I did stop working full-time because of fatigue and other symptoms.
So. Yesterday’s scans not so good. Primary tumor has grown 25 percent since last August. Second tumor has gone from pea-sized to golfball sized. LFTs are very very slightly elevated but doc says liver still functioning perfectly normally.
Have been put on some long-acting pain-meds to try to control pain cycle. Will report on that as I have chance to get used to it. Pallaitve care doc thinks long-acting drug may help faitgue a bit because I’ve been taking short-acting pain meds, so have lots of peaks and valleys throghout the day. We shall see.
So the most disturbing thing: when I pressed for a prognosis (and who among us can resist this), the onco said I have six months to a year. Of course this means he also predicts a fairly rapid decline, since I can’t expect to be all healthy and pain-free until month 12 when I kick it.
I guess the feedback I am looking for is this: like all of you, I obsessively read the little bit of Cholangio research that exists.
As far as I read, chemo remains successful (at any level) only about 19 or 20 percent of the time. Doc said I could get potentially gain time with the chemo (4 months to a year?) but I think the quality of life trade-off tends to make that “extra” time not so attractive.
I also wonder about the prognosis. Certainly it makes sense based on the statistics. Then again, the prognosis that said I’d be dead by Sept. 09 made sense too, but I beat it.
We know that with this disease, prognosis is not solely tied to tumor size or even how rapidly the tumor(s) grow. In fact it is hard to say, as far as I can see, why some of us decline relatively quickly and some do not.
Has anyone else had similar circmstances or had similar circumstances with loved ones? Should I be regretting renewing my magazines for 2-years? Anybody think this one-year-or-less thing can be beat?
I know it can’t be beat forever. But Jeez. I’m only 45. I haven’t even figured out what I want to BE when I grow up.
Love to all,
Irene
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