kris00j
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It’s funny that so many of us have sleeping problems. I’ve never been able to sleep a whole night but chemo really knocked me off kilter. I always thought it was the steroids that made me sleep less. Of course, with no chemo since November I have to figure out something else.
Now I think it’s just the brain that won’t shut up. I fall asleep and then around 2 or 3 I wake up thinking, “what if I ask my dr. this? or that?” or “what if this happens?” and then I can’t sleep. It’s a good thing I got laid off and don’t work!
Fatema:
I think it all depends on the patient. Each person has different results with similar chemos, unfortunately.
I was on GemOx and it worked wonders for me. From what I’ve read Oxaliplatin and Cisplatin are the 2 main chemos for this disease. They mix with different other chemos for cocktails and sometimes they work great… sometimes they have to change the chemo treatments.
I hope the new cocktail works wonders for your mother.
KrisThanks for the picture Grover! I will bring this next week to my surgeon, also. He draws like a 3rd grader, too. As I understand it when he does my resection I will lose 1, 2, 3, 4a, 4b and most of 8. I believe, although it was very small when we found it (only 5x6cm or so) it was located in 1, 2, 4a and 8 at the very top of my liver.
Grover, I am so glad to hear your great news! I know it’s scary to put the good news into words or writing, also, just in case you jinx it, but we all (I’m sure I speak for everyone) love to hear good news, even if it’s temporary good news! It still gives us hope.Kris
I find this very interesting. It’s tempting to find out what MD Anderson says about the tumor and whether nanoparticles would work. Of course, I have the liver infusion pump which is similar in that the chemo is pumped directly into the tumor, but not using nanoparticles.
If my surgeon hadn’t said resection is possible now, I might have looked into it further. I know there’s a dr. in Pittsburgh (which is still 5+ hours away) and I would be very tempted to see what my chances would be, and whether my insurance would cover clinical trials.Although the acetaminaphin products are hard on the liver, that’s all I’m allowed to take, also. Up to 2000 a day, although I try to not take anything. All of my meds are acetaminaphin based. Occasionally I take a tylenol for pain but I avoid the oxycodone and tylenol as much as I can.
Walkingthepath: I suggest you ask your doctor/onc what they prefer you take. I’m not clear on why I can’t take ibuprofen. Don’t know if it has anything to do with chemo or if it’s because I have a liver infusion pump and that’s hard enough on the stomach. I have to take an omneprazole every day because of the pump.
KrisMarion:
MD Anderson and of other cancer centers are also working on nanoparticles using the Kanzius Noninvasive Radiowave Cancer Treatment. A Radio-frequency Coupling Network for Heating of Citrate-coated Gold Nanoparticles for Cancer Therapy: Design and Analysis.http://www.kanziuscancerresearch.org
Sounds promising!! And the Dr. in Pittsburgh only works with the human liver. This will be a wonderful advancement not only for cc but for many other cancers.
Kris
I, too, started eating “healthy” about 2 years before I was diagnosed. I didn’t completely go organic or anything, but I cut out everything I love. Ice cream, chocolate (mostly… snuck a candy bar occasionally), cookies, soda, caffeine, fried food and beef for the most part. I never drank coffee. Have been drinking green tea for 7 or 8 years.
Then I was diagnosed.
My one onc said I had lost so much weight right before and after my first surgery that I could eat whatever I wanted. So I ate ice cream whenever the neuropathy wore off and started eating chocolate and wings again. I still mostly steer clear of the soda and fried food except for the wings but I allow myself to eat badly again. I figure what the heck? Depriving myself and being “healthy” didn’t help, so I let myself be “bad” now.
And Lainy: congratulations! I’m so happy to hear that you got to hear B9!!!
KrisCLKEMPF:
Where is the tumor wrapped? Mine is around the vena cava, but with chemo has shrunk enough that my surgeon is confident he can get most of it and will burn or electrocute the cells he can’t remove. My tumor is down to approx. 3×2.5cm or so. I have another CT scan Monday to get a new reading n the situation then resection in March.
But the news that chemo has worked so well is wonderful!! Let your surgeon guide you and get a second opinion if you are not comfortable.
KrisGrover:
I am so happy to hear your news!! I pray for everyone on this board every night. Tonight I will stress the words “And please give their surgeons the skill and wisdom to have successful surgeries”!!! I can’t wait to hear your good news after the resection is over.Kris
Rick: I’m with you on the great winter! We’ve had hardly any snow and days in the 50 and 60s! It’s been wonderful! BUT I do have to say we need a good cold snap to kill all the bugs, or it’s gonna be a nasty summer! So bring on a cold snap! Just make it a DRY cold snap!!
KrisYay Liz’s hubby! Education and early detection are the best!!! Give him a thank you hug from me.
Kris
Boudreaux: many prayers sent!
And I’m sorry, but I don’t think this cancer is going to be considered a rare cancer for much longer. I look at the growing numbers of new people on this site, plus hearing from friends that people THEY know have it. Unfortunately, but good for getting more funding to try to cure this.
I hope your scan and MRI turn out to be something other than CC. And you have every right to be afraid. I was terrified when I heard I might have cancer. I’ve always been so healthy-how could I have cancer? It’s a tough reality to accept.
I also come from a family of alcoholics. I’ve tried to hold it in check for years because I know it’s in my family. Every once in a while I would lose control for a night and “tie one on” but I never considered myself a really heavy drinker.
Since this started, my parents have both stopped drinking (my father’s liver is getting bad, and his kidneys are, too). My one brother tried to stop but wasn’t too successful. My 3 other brothers try to keep it in check, also. One only drinks on the weekend, one drinks rarely, and one almost never touches alcohol.
How do we get to be the lucky ones? I wish someone knew! If we ate river fluke it would be an easy answer. But how do the rest of us get this? And why is it so incessant? And why does it attack different organs? All answers I would love to have put into understandable English for us.
KrisWell, my CA-19-9 came thru after the appt. It’s back up to 153 from 84 in Dec. and 97 in Nov.
I hope it’s just bouncing around. Alkaline Phosphatase is still high but it’s been high all along. Bilirubin is in normal range.
The rest of my bloods were in the normal range. The Complete Blood Count numbers were all on the low side of normal tho. I don’t understand why they aren’t climbing since I haven’t received chemo in so long? I just looked back and some of them are actually lower than when I was receiving chemo.That’s why I’m getting the scan. I’m hoping because of the scan she will finally give me chemo again!! (who hopes for chemo??) More to add to the “pet peeves” page. Hoping for chemo.
My last scan was Dec. 30. The sac was smaller, but still too large for my onc to give me chemo. So she wants another scan. I understand her hesitation, really I do. But they need to talk so I can get a united front instead of 2 differing opinions.
