kris00j
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Hi Breakaway:
I presented with no symptoms of cc. I had a gallbladder attack. I always thought the attacks were my bad back acting up. I had only had a few attacks over the past few years. I finally went to my regular doctor and she immediately said “gall stones” and sent me for an ultrasound. The ultrasound tech saw the tumor in my liver. She did not say anything but I knew something was wrong because she spent so much time trying to “get a good picture of the liver”.
If I were you I would demand some more tests. Even a blood test checking the CA-19-9 marker would help. But if you are presenting with pain and jaundice, I would think there is something wrong, too. And be your own advocate! No one else knows just how you are feeling. Make the doctors listen to you. It’s your life, so err on the side of caution. Get the answers you need. The earlier they catch any of these gastro cancers, the better.Kris
Pam:
I pray nightly for Lauren and everyone on this site. I hope the MRI goes well. Shrinkage is good!
Have you tried Ambien? I take Ambien CR and it helps me sleep. But if woken up too early I feel hung over. There’s also a natural sleep remedy in Walmart that works for me. And it is supposedly natural and I never had side effects.
IF nothing else, at least it might help you relax a little when suffering from scanxiety.
KrisI went into the hospital the week before Thanksgiving with a fever of 103.8. They did xrays, ultrasounds, CT scans, and all they kept saying was I had fluid in my abdomen and the pump was likely infected. It would have to be removed. I kept saying that is not an option.
After release, I find out it’s not just fluid in my abdomen. It’s a sack of fluid in my abdomen. Big difference.
The sack was approx 8×5.7 on Dec. 5 and it’s 7.5×5 or so now. So it’s shrinking.
Dr. Fong said one of the choices I have is to aspirate the sack, but he didn’t want to do that because it opens me up to more infections. And since I have so many of them already why tempt fate? And also if he puts a hole (no matter how small) if the duct gets blocked again and the fluid starts building up soon, it gives the fluid a chance of getting out into my abdomen. So… we wait!!
Thanks everyone for your words of encouragement. I really need it right now since my boyfriend and I just broke up (my choice, but still hard) and my family lives so far away. I rely on friends and phone calls to keep my spirits up.Thanks Susie and Marion.
Tiffany: I only have the one tumor, which was around 5 1/2 x 4 1/2 cm when I started in Feb 2011. I started chemo at the end of June 2011. As of Friday the tumor iis 3 x 2.1 cm. That is with 6 rounds of Oxaliplatin, 3 rounds of FUDR thru the pump, and 11 rounds of Gemzar. We had to quit Oxy after 6 rounds because of the neuropathy and the pump was tough to get going. Then with infections and various other problems, we had to quit using it for now. As of now I have a sack of bile in my abdomen near the pump so my onc won’t give me chemo anymore. But the tumor is still shrinking so I’ll take what I can get.
The Oxaliplatin worked really well with the Gemzar. So did the FUDR.
I’m sorry you had to join this group at such a young age. I’m only 48 and I think that’s young for this cancer, but 29 is way too young to have to go thru this. I hope you have good oncs? Do you have postings? How many tumors do you have? What protocols are you doing?Kris
Thank you for posting, Bob:
I am so glad to hear your news. Not about the fact that you still have “scanxiety” but that 15 years ago you had your surgery and you are still going strong!
It is postings like this that keep us going. I loved reading your news.
I myself am looking forward to being able to say “cancer free”. And I WILL love to add a number before those words as the years progress.
Have a wonderful Christmas and New Year! May 2012 be good to you and your family.
Krislost_soul84:
WE all have our moments. I was diagnosed in March 2011 and am hoping the tumor will shrink enough to finally be operable. I have my moments every day. I try so hard to be optimistic but at some point every day I cave in and worry and cry. After a few minutes I pick myself up mentally and get on with my day.
We all have our moments. But you need to keep remembering that positive thoughts and attitudes go a long way in this fight.
BTW, my oncologist isn’t the friendliest person in the world, but she’s one of the best. And I am trusting her and my surgeon with my life!! Literally.
Best of luck to you. May God give your oncologist the knowledge needed to improve your odds and help you fight this horrible disease.
KrisI am so happy to hear your good news and wonderful attitude! It gives me (and many others) hope.
I hope we all get great news in 2012! Let’s all beat this thing!!Kris
Janine:
I am so happy to hear of your shrinkage!! We LOVE shrinkage around here! It sounds to me like the chemo DID work… just took a while!
Have a wonderful Christmas and enjoy every moment of it with your husband!!
KrisI talked to Dr. Kemeny yesterday and she won’t give me chemo while I have this sack in my abdomen. I basically told her she needs to talk to Dr. Fong so they can tell me what I’m going to do. She has scheduled another CT scan for the 30th to compare the size of the sack of fluid. Hopefully they scan the tumor, too.
All I know is with everything that’s been happening the past couple of months, I have had very little chemo. But, surprisingly, and very happily, the tumor is smaller by .5cm lengthwise. I guess the chemo is still killing and shrinking long after it’s been delivered.
I hope the tumor has shrunk a little more by next week. I’ve had my troll busy drinking and eating so hope he did some good! If it hasn’t shrunk, I don’t know if they are going to want to treat the fluid or just wait to see what happens. So far the tumor has remained stable, and that’s good. The waiting is tough tho.
I just have to remain thankful that I’m still healthy. And hope that they make a decision soon and that it’s the right one.I met with Dr. Fong (my surgeon) today and he is pretty sure I have a blocked bile duct. So the fluid buildup is bile. He says he doesn’t want to do anything unless I start getting sick. Right now it’s uncomfortable (not really painful) but the shortness of breath is really annoying. I used to be able to dance the night away. Now I get most of the way thru 1 song and I need a rest. It’s hard for me to lose that, too. But it beats the alternative, right?
Dr. Fong says if I start spiking a fever or getting sick I need to get up to Sloane Kettering and they will probably drain the sack with a needle. He doesn’t want to do it now if my only complaint is shortness of breath, as it will open me up a little to infection and I haven’t been able to fight them very well.
The other choice is to do the big surgery now. He says he’s still not comfortable with the size of the tumor, but he can resect the liver and zap the area where the tumor is and kill off any cancer cells he might have missed. The resection would include the bile duct that is affected and the sack of fluid.
He did say that he wants me to continue chemo thru the pump (which I haven’t had for about 6 weeks) to try to kill more of the tumor. So I will hopefully go back to NY on Wed. (I need frequent flyer miles! hehe… actually frequent train miles) And I will hopefully get the pump filled with chemo. At the end of Jan. I meet with Dr. Fong again and we will revisit my status.
Probably within the next few months we will be looking at resection. Scares me to death!!! But again, it beats the alternative… that’s my mantra in case you haven’t figured it out.
KrisHi, Eli:
My surgeon told me that my tumor (which was approx 5x6cm when it was discovered) took about 9 months to get to the size it was. That was his guess anyway.
I never had a lot of g.i. problems. I did, however, have gall stones. Which may or may not have travelled to my bile ducts. I had 4 major gallbladder attacks before my gallbladder collapsed. I always thought it was my bad back acting up and causing pain. I never went to my primary care physician. I wish I had: this story might be quite different if I had. But as they say, hindsight is 20/20.
Good luck. Hopefully one of these days they’ll have some more answers for this awful disease.Kris
Dr. Kemeny said the bacteria was very rare. Of course it was: why on earth would I have anything NORMAL??
I finished i.v. at home last night. The cough is clearing up and I’m feeling a little better. Still short of breath, and the pump area is a little tender but I’m feeling better every day.
So they stopped by today and unaccessed(word?) my port. YAY!! Back to no tubing.
Bad news today: I found out a friend of mine passed away from her prolonged (3rd) fight with cancer. She was a real fighter and I feel a little guilty that I wasn’t there for her at least a little in the past few months. We weren’t great friends, and I know she had a wonderful support group, but I still wish I had picked up the phone to call her instead of just thinking about it.
I also listened to Kim’s radio show today. She’s making me think about whether I’m fighting hard enough or not. So no matter what I feel like today, I am going to get my butt out of the house and go to dancing tonight. I might not dance, but I’m going to see my friends. I know I need to steer clear from everyone in case I’m still fighting infection but I’m going to try to be more “normal”. (don’t say it out loud, but I’m gonna look for a p/t job. Every time i say that, I end up in the hospital, so I’m whispering it!!) Maybe that will make me feel better and more “normal”.I’m pretty sure they did. They said it wasn’t normal. Not sure what that means. I probably should have asked more but the doc showed up at 6am and I wasn’t thinking very well….
Sorry I haven’t posted. I was released on Friday from the hospital. I still had concerns because I never got control of my fever completely. I discussed it with the dr. and he said it should be okay. So I went home.
Got home in the afternoon where the “infusion” people came to teach me how to self-administer. Since I have a port it makes it pretty easy.
Still fighting the fever but am basically doing what we did at the hospital: take Tylenol and go to bed… so that’s what I’m doing.
Have an appt. tomorrow in NY with my main onc (the pump lady) and I wonder how it’s going to go. Should be interesting…
Kris
