kris00j
Forum Replies Created
-
Posts
-
Hi DukeNukem,
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 kris00j@gmail.com. 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…Kate,
I love reading posts like this! It gives me hope, although I am not operable, that I, too, may eventually be able to have a yearly scan! Although I’m not sure I would know what to do with all that free time! lol
Thank you for sharing with us, and enjoy every minute of this holiday season!Jules,
I have heard of similar “double resections”, for lack of a better terminology. Praying for shrinkage then quick regeneration for your mom.Hi,
To chemo or not is an extremely personal choice. I am sorry you had such bad reactions to the chemo. At least now you can say you gave it a go.
I don’t know much about how your journey will go now, but know my thoughts and prayers are with you.Wow, Jules! What great news!! The first surgery is maybe some sort of embolization, to block off and kill the diseased part of the liver. Does that sound right? Although I don’t think most of them are “big” surgeries. He might have another idea, too.
How exciting to have the possibility of resection! Keeping my fingers, toes, and eyes crossed for good news!!I, too, was healthy most of my life. I had allergies, and a cervical pre-cancerous condition years ago. A quit smoking in 1996. I was a social drinker.
While no one knows how many of us get this disease, there are risk factors.
People with gastro problems are at higher risk. I believe this includes reflux.
People in Thailand who have eaten the river fluke are at the greatest risk.
They have now come out with new guesses as to who are at higher risk, and, surprisingly, people in the printing/photo developing field may be at greater risk. For some reason, in the U.S., the left and right coasts have more cc patients.
Personally, I worked in the printing industry all of my adult life. So did a few of the cc members I have met. I have met many from the east coast.And Daisy, tell them that veggies are great! The best foods to fight any cancers. It’s sushi, processed foods, and sugars they have to stay away from! lol So no McDonalds or Burger King anymore!!
Caroline,
Only a few more weeks of patience! Then you can find out the choices going forward. I have to say I love Dr. Fong, and will probably go back to him IF I am ever deemed operable. I no longer go to Sloan for my treatment. He is a wonderful, caring man. And I like Dr. Brown, too. She is another “straight shooter” who will tell you what is going to happen and how she feels about it.
Your mom us in good hands with them.Sister,
I was on gem/Ox and did have nausea and diarrhea for a few days after each infusion. And exhaustion. But they all went away after a few days.
I would talk to the doc about the side effects. If she is being honest when they ask, they will either give her meds to try to control it or change the chemo. There are meds out there for both side effects.
I would talk to your sister about getting another opinion. It doesn’t hurt. It can only help. I will add, tho, that liking your onc is much more helpful when it comes to the care.Hmmm. I haven’t had toxicity problems, as far as I know. So that’s good! And I just started cycle 10. I’m perfectly happy with it so far.
I thank you for the further info which I was unaware of. I’m hoping some members may be able to benefit from this trial, too.Lainy, I just reread this: it is misleading! I am still in phase 1. I would not be eligible for phase 2! I don’t know if I could change to phase 2 if it proves even better. But since all is great here, I don’t know that I would want to!
While it would be wonderful to discuss the possibilities of dying, many friends and family don’t want to hear it. I remember when I was diagnosed I was terrified, and tried to talk to my parents about it. They have been extremely supportive throughout this whole journey, but they will NOT discuss the probability that they will outlive me. There are many hospitals that have social workers that can talk to you, and even give you possible insights you didn’t think of. They can be therapists, but also a source of info for other help as well. I’m pretty sure MD Anderson has people you can talk to. Maybe even over the phone.
And, yes, crying is normal. I cry for myself, but I mostly cry over some of the posts that I may or may not be able to respond to. Think about it: we have been attacked by a mostly unknown and uncontrollable monster. Sometimes we can get the upper hand. But to get there, we can often feel totally helpless and not in control of any of the situation. The possibility of our lives being at stake coupled with the stress of often having to make quick decisions with no guarantees could cause anyone to break occasionally.
I have found strength in prayer, and have come to believe God has a plan for me so I shouldn’t stress about it, but it is still hard to do.
Don’t be hard in yourself. And call MD Anderson and get in contact with someone you can talk to.I heard today that the Phase II has started. It is being paired with Cisplatin. BUT the entrance rules have changed. Now you must have only had one path of treatment. So even I am not eligible for Phase II!
Hi Stacie.
I’m sorry you had to join our family. I, too, say get another opinion, and definitely ask the docs what their choice would be. And I believe in telling the truth. I think she deserves to know, so she can be prepared and be able to, as Lainy put it, “get her house in order”.
Please keep us updated on your decisions, and progress. And don’t hesitate to ask questions. We are all here to try to help.
