kris00j
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Sharon: I was diagnosed in March 2011 and had my first surgery in April. Since then I’ve had at least 2 if not 3 blood infections. My onc says to call the office if my temp is over 101.5. Of course this almost always happens at night. They have always told me to go to the ER and start IV antibiotics. The last one was during the day and my temp was 103. After I was released from the hospital the last time I had a visit from visiting nurses and they showed me how to self administer antibiotics thru my port. If your mom has a port it’s pretty easy. Needleless syringes are a godsend!!
KrisSally:
I posted on another topic but wanted to repost here in hopes you’ll read it. Have you thought of Cooper Medical Center? They’ve been advertising they now treat bile duct cancer. Or NY Presbyterian in NYC? Jim Wilde on this forum went to Dr. Kato (surgeon) there and might have some info about possible oncologists there.
From reading other posts from you: was your sister’s tumor too close to the vena cava? That’s my problem. It’s wrapped around the v.c. and my surgeon now says he’s pretty sure he can get most if not all of the tumor out while resecting 2/3 of my liver. He says he will cauterize or electrocute the area around the v.c. to hopefully kill it all. (he believes if he’s too sure of himself, God will laugh at him)
I had Gem/Ox, and it did a great job on my tumor. Hopefully it will do just as good a job on your sister’s cc. I hope so… cc seems to be unique in that 2 people can get the exact same cocktail and have totally different outcomes.
The main side effect is the sensitivity to cold. Make sure you bring gloves and a scarf, and that her feet are warm. The oxaliplatin makes it tough to pick up cold objects and drink cold drinks. I even had to put gloves on to take eggs out of the fridge. I’d let them warm up for about 20 minutes so I could break them and cook breakfast.
Good luck with your second opinion search. I hope someone helps you soon!
KrisSorry Derin, for the typo on your name. Sometimes I type too fast and don’t proofread. I’m usually better at that, having an “alternative” spelling myself! And it’s 60 degrees today! 😎
Sallypa: did you check with Cooper Medical Center? They’ve been advertising about how they treat bile duct cancer (guess they don’t want to spell cc out). Or NY Presbyterian in NYC? Jim Wilde is a strong proponent of Dr. Kato there (surgeon) and might chime in on that. I’m sorry Sloane Kettering was so difficult with you. I can’t believe they wouldn’t help you. Good luck with MD Anderson or wherever you end up getting a second opinion.
Kris
I am going to ask my onc about Gem and erlotinib since I can’t have the oxaliplatin anymore. I want to have chemo after resection and wonder if the erlotinib will work with just the Gemcitabine.
I’ll let you know what she says and if it’s an option.Kris
Darin: Great news! I’m happy to hear you have no effects from Gemzar. My main effect was a little tiredness the next day.
I was wondering if you wanted to come up to PA to wash my car???
Good luck next week with the Gem/Cis. I’m interested in how you handle it as that might be my option after my resection.Kris
In no particular order:
I hate knowing anything about this disease.
I hate that I’ve learned all these medical terms.
I hate that I’ve spent more time with doctors in the past year than my previous 47 years put together.
I hate the huge scar on my belly.
I hate when people say “but you look good” like I’m sick or something. Hey people, I’m not sick, I just have cancer!
I hate when the first thing people ask is “how are you feeling?”
I really hate the fact that it’s “GREAT” that I’m about to have another surgery!!!
I hate living so far away from my family.
I hate that I cry so easily anymore.
I hate not being able to ride my motorcycle.
I hate the fact that I’m now afraid to be alone.
Because of chemo and other tests, I now hate chicken noodle soup and jello.
I love the fact that it’s made me appreciate life so much more.
I love the friends I have that are there for me.
I love the fact that, for the most part, I’m still “healthy”.
I know there’s more, but that’s it for now.
Kris
Hi Baroque:
I wish your sister all the luck in the world. If you need cheerleaders, there are some GREAT ones here!!
Your sister has got to be a strong woman to have gotten this far without a port! I did 1 chemo round and scheduled a port to be put in. They had to move the IV 3x because my vein collapsed and the 2nd one burned so badly. I had track marks for weeks! (I’m a bit of a wimp when it comes to needles… hehe)
I’m so glad she seems to be getting good treatments, good advice, and she has you on her side!
Wishes and prayers for continued success.Kris
Jtoro:
I did 6 rounds of oxaliplatin. The first round wasn’t bad. The 2nd caused a tingling in my hands and feet, and my throat couldn’t stand cold, but it went away after a few days. Was a little nauseous, but able to handle it with meds. The 3rd I finally succumbed to the nausea. It actually made it easier because I was fine aferwards. But the neuropathy lasted longer: almost the 2 weeks until the next treatment. The 4th, 5th and 6th gradually increased the neuropathy until it didn’t go away in my feet. My hands occasionally tingle, but my feet always tingle and occasionally burn. The nausea never went past the 1st day because I let it win. After about an hour I felt much better, and never felt nauseous the rest of the time. My feeling is the oxy was definitely worth it for me at least. It really worked on shrinking my tumor.
I was on Gem/Ox. I was also on FUDR thru a pump. Have not had the 5fu.
My suggestion is warm socks, and mittens/gloves and a scarf. You might want them if the neuropathy starts immediately. And you’ll want room temp drinks for a while after chemo.
KrisThanks Maria. I appreciate the input from everyone! Next week I can talk to the oncologist and fnd out what the plan might be.
Tim: Thanks for the link and info. I was sent to this forum to read Abstract 287. Very informative stuff!
KrisGood luck. As far as second guessing, you can’t do that!! Make the choice that seems right to you… use the oncologist and any other doctor’s advice to make decisions.
“coulda, woulda, shoulda” can be said by almost all of us suffering from cc. We just have to make the best decisions for us and hope we are right.
Good luck. I hope you get in to see someone at SK. BTW, I didn’t give you Dr. Kemeny’s phone number. It is 646-888-4180. Even if she won’t take your sister, maybe her office can give you another dr.’s name and direct office phone number.
KrisI would call again and insist on talking to someone else. Usually there are 1 or 2 people you can talk to. Explain again that chemo was not started and since cc is involved, you need the appt. FAST! My Onc at SK is Dr. Kemeny. She is a biggie in the hepatobiliary cancers, but I think she only deals with patients with her pump. You can try tho. She has office hours on Mon. and Wed. but her appointment people are there regular hours. And she is brilliant, but her bedside manner is horrible. I’ll take the brilliant part: we don’t need to be friends, she just has to have the wisdom to do what’s right for me!
If I read your name correctly, you are in PA?
Normally I wouldn’t say this because I don’t know the dr., but there is a thread in the announcements forum called GI ASCO 2012 Abstract Synthesis and Updates
In it they talk about all kinds of tests. This is one of them. If you ARE in PA and near Philadelphia, maybe you can check this Dr. out for a second opinion?
• (Abstract #328) An interim evaluation of efficacy and safety of the combination of panitumumab, gemcitabine, and irinotecan in patients with advanced or metastatic cholangiocarcinoma: A phase II study. Presenting Author: Weijing Sun, Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
I know nothing of this dr. except that he is the author of a cc study.
I hope this helps. Good luck and I’ll keep you in my prayers.
Kris
Another note about after the surgery. I know I am jumping ahead, but I need to think about life after the surgery.
Since the tumor will be gone the pump will no longer lead to anything so it will be filled with glycerine and changed every 6 weeks. I don’t think I want it removed because of the following sentences…
I was on a Gem/Ox cocktail but the oxaliplatin got too much for my system. My feet buzz and burn from the neuropathy (not complaining). This means they can’t give me oxaliplatin. And if anyone wants to know, I believe it was the ox part of the cocktail that started kicking my tumor’s butt. I also believe it was the FUDR in the pump that moved it along at a faster rate eventually.
So, does anyone know if Gemzar alone does any good? I think, since I’m pretty sure I won’t have clean margins, that I need to fight with chemo after the resection. And before you yell at me: the tumor is still attached to the Vena Cava. That means Dr. Fong probably cannot remove the entire tumor. He will either cauterize or electrocute any cells he can’t remove. I’m HOPING with all my heart/will/mind that he kills it all and gives me pretty clean margins. BUT I need to be realistic and think ahead to chemo.
I believe cisplatin has the same effects as oxy does, and may be too closely related for me to use? I will be asking Dr. Kemeny on the 1st but want to be prepared if i can get any input from others that have heard, read, or been thru this.
Now, back to the pump. The reason I don’t want it removed is once it is taken out it can’t be put back in. I need to talk to Dr. Fong about this, but I guess (after talking to someone else with the pump) he could re-route it if the cc returns as a single tumor again… that’s why I want to keep it. I didn’t do part of my systemic chemo well, so I’m worried about needing systemic chemo again. And keeping the pump in is a small price to pay to stay alive, as far as I’m concerned.
I hope someone can give me advice on Gemzar only or the differences between Cis and Oxy and whether I could change to Cis if needed.Thanks,
KrisThis is my list of blood tests where they ran CA-19-9. Of course it’s backwards, with most recent on top, but you get the idea. I guess the antibiotics kicked the CA-19-9’s butt??? I haven’t had chemo since 11/14/11 and it was down to 2x normal since then. It’s creeping back up again.
01/04/2012 153 Units/ml No chemo since 11/14/2011.
12/14/2011 84 Units/ml No chemo since 11/14/2011.
11/28/2011 97 Units/ml Released from hospital. Massive doses of antibiotics in system. Sac of bile in abdomen from blocked bile duct. Only Gemzar this month on the 14th.
10/31/2011 237 Units/ml FUDR and Gemzar only.
09/26/2011 1074 Units/ml After blood infection? (further tests came back negative) I’ve had FUDR thru pump and Gemzar only. Oxilaplatin has been discontinued. Lots of antibiotics too.
08/29/2011 131 Units/ml After FUDR thru pump and Gemzar every 2 weeks. Oxaliplatin every 4 weeks alternating with FUDR.
07/27/2011 152 Units/ml After 2 rounds of chemo with Gemzar and Oxaliplatin. Pump not useable yet.
05/09/2011 378 Units/ml After surgery where they installed the pump No chemo yet.
04/09/2011 484 Units/ml First blood test at Sloane Kettering
Kris
Tiffany:
My CA-19-9 numbers, when supplied, are all over the place. I don’t worry too much about it, because the tumor is shrinking, and the 2 affected lymph nodes are now back to normal size and show no sign of cancer. I will insist that my surgeon remove them, tho, when I finally get my surgery.
I figure the CA-19-9 has done the job: it alerted my doctors to what was going on. I know that it is an important test to run, and I will worry about these numbers again especially after the surgery.
BTW, they have been as low as 140 and, especially at the beginning, as high as 1000. That was scary, but it’s mostly under 300 now when I see it. My onc worries more about the RBC and WBC and my bilirubin.
Thanks, Eli, for explaining it. I think I’ll start monitoring it again more closely.Kris
