WOW!! Great news!
Re: Sodium Valproate Inhibits the Growth of Human Cholangiocarcinoma In Vi (1 replies, posted in New Developments)
How wonderful! Thanks for sharing!
While I can't answer based on personal experience, I will say there are different mutations of this disease. My surgeon said that quite often when it spreads somewhere else, it does so as a different mutation. I have at least 2 different mutations within my body. The tumor in the liver is one mutation, while the metted lymph nodes are different cell structures.
Some of these mutations are slow growing, and some are fast growing.
Based on what I know, it is, unfortunately, the luck of the draw. I do know that most oncs will suggest adjuvant chemo post resection. And your mum will be closely monitored for the first couple of years.
I hope this helps.
Hi, I will try to address this, based on my experience...
I had fevers almost every evening after surgery and during chemo. They were almost always gone in the morning. They ranged from 100.5-101.5. I was told to call the onc if that happened, but i didn't unless it was 101.5. Usually I just took a Tylenol and went to sleep. My suggestion to you is to call your onc and let them know you are having recurring fevers that are gone in the morning. You may be fighting a low grade infection. Especially if it consistently gets over 101. They may tell you to take it easy and take some med or other.
As far as to treat or not. That is a very personal decision. No one can tell you what to do. We recently had a discussion with another member of the board about this very topic. There are so many options out there now, with new ones every day. I suggest discussing this with your onc, also. If the cells are quiet right now, they sometimes will suggest you give your body a "rest". I went through that also, as my body doesn't like chemo. We let my body rest until the scans showed new activity, then attacked it again. I wanted to keep attacking, but now I understand the chemo was too toxic for me and my onc wanted my body to heal. While I understand, I still don't fully agree with what we did, as I missed my window for a resection as a result. But I am now on a trial with very few side effects and stability going on 10 months, so I'm not going to complain!
I hope this helps. Please keep us posted on your decision.
Alison. Glad to see you finally joined us. But sorry you had to become part of our family.
Dr. Fong is great. I love him. He is a straight shooter. If he doesn't think the odds are good, he will tell you. And he's positive, so that's a plus. He holds out hope instead of saying something like "maybe, but doubtful".
I do have to say that after almost 3 years, it's a little easier reading the bad news, but not much. I still get very emotional.
There are so many more treatment options today compared to just one year ago. My hope for 2014 is for a wonderful breakthrough for cancer studies, cc in particular, so we can all breathe a bit easier!
I'm sorry to hear this. I hope you get the chemo attack in place soon.
I think you are right. Sloan Kettering is one of the few places still using it. While it works great toward killing cc, colon, etc. tumors, the chemo is tough on the body, as is the surgery.
It is my experience and that of most of the members that CA19-9 used used as a loose basis.
My onc pays little attention to the numbers. The fact that it is up to 67 from 25 is something to be noted. If the scan was clear, I would say either your team will schedule a PET scan or rescan in 8 weeks. If they don't mention a PET, you should ask. Depending on insurance, you may be able to get one with no problems. If you have AETNA or any similar (backwards) insurance, you may have to fight for it.
Ask your onc what he/she thinks.
I know Sloan Kettering has a trial involving gem/Ox adding another ingredient. It might be a choice. I wish I could remember the new agent they added. And whether it's working.
Deborah, I, too, am sorry you had to find us. Unfortunately, the diagnosis of cc is almost always sudden and unexpected. And it's so hard to grasp, and wrap your head around things.
I have been living with an unresectable (although fairly small) liver mass for almost 3 years since diagnosis, so nothing is impossible.
I drank ensure when my appetite was down. It's another alternative, high in calories and nutrients.
I hope you get some good advice for a treatment option and pain management soon.
Hope this gets a giggle. When I went to bed last night I pictured my little troll. He came right up, smiling and antsy. Guess he's been bored. I told him I didn't need him, but I was sending him up to NYC for Dave, and he wiggled like an excited puppy! I said I wasn't sure where, but he just winked and trotted off!! lol
I woke up a couple of hours later and there he was, waiting, as he knew I was sending him to Kris and Mark. I told him he had a long trek, but he just winked again and ran out. He's bow legged and so cute in an ugly sort of way!
I woke this morning and there he was again. So I told him if he was still hungry I had that lymph node. So he munched on that, too.
I just responded to Sandy and am going to send my troll Dave's way for a tumor snack. He likes them! I will send him on to you, too, to munch on Mark's for dessert! He's probably feeling neglected as I haven't needed him lately.
Oh, Sandy, I am so sorry! Dr. Fong is the one who told me than when this basta@# begins in a new area it often is a different mutation. But I thought gem/Ox was pretty good at getting them all. I know that I have at least 2 diff mutations.
I hope that by adding Xeloda you are able to get back in control of the situation.
I don't have any words of wisdom, as I never had another tumor in my liver, nor did I have new growth while on chemo.
I also had radiation. We tried stereotactic radiation, and I had 7 months with no treatments afterwards. We knew the disease would eventually rear it's ugly head again, but the radiated areas are still nice and quiet. It's been 17 months. I did have a new met after about 7 months, and opted for the trial that I am on.
I have decided to try to let God worry about things. And I have let a lot of the worry and negativity go. I believe it has helped.
My wish for the new year (or sooner) is that there is a big breakthrough in the treatment, and we can all be cured.
My prayers are with you and Dave. I am sending healing energy. My troll has been quiet for some time: I haven't needed him. But I will try sending him Dave's way to munch on that nasty tumor!
Re: Phenethyl isothiocyanate induces calcium mobilization and mitochondria (12 replies, posted in New Developments)
I will have to try the cauliflower trick as well. I DO like broccoli, thankfully, but hate sweet potatoes. So I will be trying the sweet potato recipe as well. If I cut them thin enough, they should crisp up like potato chips, right?? lol
White pizza with broccoli has garlic, another great food! That's how I eat it guilt free. (Just saying!)
While Kris passed away before I found this site, so I never got to know her, I have read many of her posts in the last almost 3 years.
It was many of her posts, and her sense of humor, that got me through some of my dark days.
I wish I had known her, if only because we share the name! lol
Oh, Kris! So much more stress to deal with. I am so happy to hear it was just a cyst.
Re: Dear Teddy Bear Dec 6th 2010 3 years have flown by in a blink (10 replies, posted in Members' Cafe)
You gave me goosebumps! What a wonderful tribute to Teddy! And what a testament to your love!
Re: Received bad news yesterday and looking for advice (17 replies, posted in General Discussion)
It's tough. I allow myself a good cry and then shake it off. It's hard, tho. I think loss of energy is normal for all of us.
Does your dad have someone to talk to? Has he thought of trying Xanax or something to help his emotional problems? I used Xanax for almost a year. I still have some, but try not to take it.
Fingers crossed that Dr. Kato has a great idea.
Re: Received bad news yesterday and looking for advice (17 replies, posted in General Discussion)
I also suggest you get second opinions. Getting an entire team together might require a lot of perseverance, but it will help. I never met with an entire team, but my onc and radiologist discussed my situation and I met with them separately.
I also think Dr. Katos team need to be informed.
Unfortunately, we don't know a whole lot about this cancer. I've heard some say it is extremely fast growing. My surgeon said the tumor in my abdomen was probably about 9 months old.
I am so sorry your dad has to go through this again. May I ask if he's feeling well? If so, he could also look into trials. There are so many promising trials out there now. Of course, that decision depends on the doctors suggestions.
I hope you can get a plan in place quickly. Please keep us informed.
Re: It's Been Awhile But when he comes to visit he does it right! (16 replies, posted in Members' Cafe)
Clare, I am not surprised. Youngsters can often see things we can't. I think it's because they haven't been told it's not real.
I remember my grandfather coming to see me the night he died. He just sat on the edge of my bed and told me he had died. And not to cry. I told my parents that in the morning. I don't know if it helped or not.
I'm glad your niece still gets to see her mommy.
This is a joint effort from EVERYONE who wants to participate. New members, old members, moderators, Marion, Lainy, Percy, Gavin, Pam, who am I missing? All the rest of the almost 3,000 members. When I joined in April 2011 there were, I believe, 1700 members. Unfortunately we are growing more and more quickly.
There are a few members I can rely on to answer my questions, or just try to make me laugh on a bad day. Many of you know who you are. Many of you don't. When I'm feeling down I love to visit Lainys visits from Teddy posts. It makes me smile and feel better. Percy and Gavin are wonderful sources of new developments or research information. Without them I would know about half of what I know. So I guess being me I should say I hate you for that!! Just kidding! Marion has donated many more hours than you could guess (and her own resources) attending conferences, etc., to find research, medical and financial support toward a cure. I'm not meaning to forget anyone: just mentioning a top few on my list of resources and support. Some of these people could have left when their family member passed, leaving us to find our own way. But they didn't.
The support of this forum has gotten me through almost 3 years of being scared, looking for answers, venting, needing support, or just looking for a giggle. Oh, and a great place to share any of my good news!
And I have met some wonderful people. I have met Kim, who left us 2 years ago, Marion, Karen, Tiffany, Lainy, Pam and Lauren, Lisa, Eric, Chris, Renee, Mary, Vince (who is not on this site), and a couple more who's names are escaping my muddled brain. I hope to meet Sandy in NYC along with anyone else who wants to get together. I want to see the tree so Jan. 4-5 are the best days I guess. Yes, I want to be the CC Ambassador! Not really.
Great!! Give me as much advanced notice and I just might get a welcome party organized!
Love the name! Welcome to our site, but sorry you had to join us.
I am almost 3 years from diagnosis. I have never heard subtype in a diagnosis, but I will bet Percy or another knowledgeable person will chime in.
As for chemo: I started in Gem/Ox and FUDR (in the pump) but had to discontinue both for various reasons, mostly toxicity levels I guess. I then had a break of a few months until things started growing again. Then we tried Gem/Xeloda, but that didn't work. So we tried Stereotactic Radiation, which worked wonderfully for about 7 months. I am now on a trial, and doing great.
Being Stage 4 is scary enough... Then you read online... UGH! I figured I would be dead in months, even though I am healthy, and mostly always have been.
I've been fighting for almost 3 years, and I'm still scared. I'm mostly scared of getting sick. Where do I go? What do I do? I live alone. It's a tough thing to think about.
So, no, you are not a baby. Most of us admit to being scared and lonely/isolated at times. And most of us will admit we cry. So no, you are NOT a baby.
BTW, my uncle died of cancer. And my father beat prostate cancer 17 years ago. That's it. No other cancers. No illnesses. Nothing. I lived a healthy life with 4 healthy brothers and healthy parents. Almost nothing in my genetic makeup. So how? Why? Me?
I hope this helped you. You are not alone with the questions or worries.
If you want to, feel free to email me at firstname.lastname@example.org. And you can ask me anything. If I know the answer, I will tell you.
And I thank God for that!! I don't know if you would recognize me anymore... Now when I smile it actually reaches my eyes!
I even get to lose 1 visit day now! Every 4 weeks I've been going in Day 28 (or close) and day 1. Now I get to skip day 28 on my non-ct scan cycles! That means I'm down to 3x in 8 weeks!! Joy!
If I had known, my flight home would have been a different day! Oh, well...