January 6, 2011 at 7:50 pm #46191melanie71Participant
Thank you so much to everyone who responded. I’m so, so glad to have found this board… people who not only have an idea of what you’re going through, but know *exactly.* BTW, we have 2 childen, ages 6 and 4. They know he’s been sick, but that’s about all. There’s just no way they could possibly understand what’s happening, and that’s a blessing. Thanks again, looking forward to getting to know everyone.
MelanieJanuary 6, 2011 at 5:50 am #46190slittle1127Member
Dear Melanie – My husband has been anemic since before his diagnosis. That’s all I know. We’re here for you so feel free to visit often and make comments. Everyone will do all they can to provide help and support. Blessings, SusanJanuary 6, 2011 at 4:00 am #46189charleaParticipant
Melanie, welcome to this wonderful site. The reason for finding us is sad but what you will receive here cannot be compared to any other website for people with a specific illness. You have already realized how unique this disease is for each individual, first because of the complexity of the liver’s function and second the location of the tumors. My course has been mild to date but gem/cis did not work for me while a chemoembolization did help. However I have a single tumor in the liver and positive lymph nodes in my abdomen. We don’t know the future so we must enjoy the present. My prayers are with you and your husband, Melanie.January 6, 2011 at 2:03 am #46188libbyParticipant
My dad is on the same chemo since November. We just recently did his CT scan after four courses of chemo. The doctor said that my dad’s tumor shrunk.
Keep faith in God, He is our Divine Physician.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.January 6, 2011 at 1:46 am #46187peonyMember
Hi Mel, welcome to the site. I’m new here as well. My husband is also on Gem/Cis. He started about a week before your guy. Similar symptoms and no jaundice or stents. Also inoperable because of mets to the bone and Stage IV. However I’m still going to push for a second opinon regarding surgery after the first pet scan. We want to pursue natropathic medicine but the onc has asked us to wait to see how the chemo is working so there is no confusion between results from 2 types of treatments.
Stay strong fellow caregiver. They need us now more than ever.
PeonyJanuary 5, 2011 at 9:33 pm #46186gavinModerator
Welcome to the site. I am sorry to hear about your husband and I am sorry also that you had to find us all, but I am glad that you have joined us all. You will get a load of support and help from us all so please feel free to ask a load of questions and we will all help if we can.
That is good to hear that your husbands pain has subsided and also that his doctor is optomistic that he is responding to the gem/cis combo. I hope for this to continue and also for the best possible outcome for your husbands scan next week. Please lets us know how this goes.
My best wishes to you and your husband,
GavinJanuary 5, 2011 at 7:51 pm #4618532coupeParticipant
I’d like to add my welcome. There is a lot of information available here but more importantly you will find compasionate understanding and support. Please keep us informed.
bobJanuary 5, 2011 at 4:48 pm #46184lainyParticipant
Dear Melanie, welcome to our wonderful family! AND my sister’s name is Melanie! Sorry you had to find us but glad you did. Where is your husband being treated, we may have some family in your neck of the woods.
It sounds like you have good attitudes and that is 1/2 the battle. It also sounds like you have good doctors and that they have things pretty much in a set plan and that is good. We like to say that we try to remain realistically optimistic.
But, you have come to the right place and please keep us posted. Good luck with the Chemo.January 5, 2011 at 3:05 pm #46183jemimaMember
Welcome to this great forum and sorry to hear about your husband.
My mum has a 2cm Klatskin tumour but had terrible jaundice and now has a stent. She has done 4 and a half cycles of gem/cis but is now on a break. She was lucky and had very few side effects. The scan showed that although there was no shrinkage there was no growth either.
She was diagnosed in Feb 2010 and I guess back then we didn’t think she would still be here but she is still living by herself at home and living pretty much a normal life. It just goes to show how everyone’s reaction and story are different even though it’s the same disease.
I am glad that the chemo has eased your husband’s pain even if it is not helping with the aenemia. Good luck for the scan next week.
JemimaJanuary 5, 2011 at 4:42 am #46182nancy246Participant
Hi Melanie, My husband Doug just started the same regimen of chemo on December 15th, so we are with you! We had good news today with his liver numbers much better than last month (don’t know what they all mean, but they are better). Besides the chemo we do naturopathic support – supplements and helixor shots. Don’t know what brought his numbers down, so we will continue it all! Doug is also inoperable with tumors in his liver and bones. He has not been anemic so don’t have any advice on that. He takes a solution from the naturopath to keep his acid level in his blood down.
Doug started getting jaundice in December but his numbers are better now but he has never suffered from the itching.
I certainly know the stress you are going through and the shock of the poor prognosis. I believe even with a poor prognosis one has to believe in living and concentrate on that. We take one day at a time and believe each day is a day that we have survived cancer. Take care. NancyJanuary 5, 2011 at 4:39 am #46181marionsModerator
Hello Melanie…. I am so sorry that you had to find us, but I am glad that you are here.
I have been told that unless the bile cannot flow freely or, if the patient is in liver failure jaundice may not be an issue. Often times our patients report of the need for a blood transfusions. Generally, it has been due to the chemotherapy treatment although, at times is becomes an issue when internal bleeding occurs. When you are speaking of nodules do you mean cancer in the bone or are you talking about blood clots? We have seen reports on both on this site.
I believe that the overwhelming good news is that his pain has significantly decreased therefore; I am looking forward to the upcoming scan report with positive feelings.
Others may chime in real soon to welcome you and share with your their experiences. This is a great group of people, always eager to help and share with others what they have learned. And, you can count on tons of support coming your way.
Again, I am glad that you have joined us although, Peter once called it: the club no one wants to belong to.
All my best wishes,
MarionJanuary 5, 2011 at 4:09 am #4565melanie71Participant
Hi everyone, so glad to have found this supportive message board.
In November, they discovered a large (7-8cm) tumor on my husband’s liver, then about 7 other smaller liver lesions during the ultrasound guided biopsy.
It took a while, but a high-tech lab test finally pinpointed cholangiocarcinoma as the primary. He’s been on Gemzar and Cisplatin since December 2nd. It kicks his butt, but has minimized his pain. They’re doing a scan next week to see what’s going on, but his doctor is optimistic that he’s responding.
Here’s what we’ve been told so far: it’s inoperable due to the number of lesions on the liver. Most patients live less than a year because it’s very difficult to treat. His CA 19-9 (I believe that’s correct?) marker is 32,000, with normal being below 40.
He doesn’t have the typical symptoms of bile duct cancer… no jaundice or itching, just abdominal pain and nausea. Plus a lot of pain from the tumor that’s on his liver, but most of that has subsided, thankfully.
Anyway, that’s where we’re at. Also, even before treatment, he was anemic enough that he needed a blood transfusion of 2 units. Since treatment, he’s been consistently needing 2 units about every other week. Is that the norm, and does anyone know what causes anemia (other than chemo) that might pertain to this condition?
One other offshoot… nodules in his leg. Not really given any explanation, other than sometimes they are an indicator of a malignancy in the body.
Thanks for listening… God bless everyone else who loves someone going through this. I know where you’re at.
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