kris00j
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Sandy,
I’m sorry your mom is having a tough battle. I hope you speak to her physician about your concerns.
I remember I ran a low grad temp quite often while on chemo. I was fine during the day, but it increased in the evening, so perhaps that is it.
And I drank Ensure to get calories and nutrients, plus lots and lots of water. Many foods taste different now, mostly worse. I cannot ever look at chicken noodle soup the same! lolSister: I was diagnosed with Stage 4 intrahepatic in Feb2011. Had mets to lymph nodes. I was put on gem/Ox and, even though my system couldn’t tolerate more than 6 or 7 cycles, it did a wonderful job of shrinking the tumor and nodes.
If she can tolerate the gem/Ox, it is, in my opinion, one of the best options.
Be careful of cold foods, and nothing raw until her health improves, as Gemzar will lower her blood counts. Get her gloves out as she will probably need them. Except for the neuropathy, the other side effects were tolerable. Nausea that was much better after I vomited for a while. Much easier than fighting it for 3 days. And tiredness.I often wish my body could have tolerated 1 or 2 more treatments, or that I had lied about the neuropathy for at least 1 more treatment, as I was THIS CLOSE to resection!
Oh, Sandie, I’m so sorry to hear you’re back on the roller coaster again! I can’t help you with Gem/cis, but there’s plenty of info on here about it.
I hate those darned pesky lymph nodes. I hope and pray for you that gem/cis works.Susie, good wishes and prayers for a great scan! And belated happy birthday wishes.
I recently bought a new blender for smoothies, too. Not a Vitamix, tho. Now to get an aloe plant. Have a friend who swears by a little aloe in the smoothies. I use spinach, banana, strawberry, and blueberry most often. Looks horrible, but you can’t taste the spinach.And happy birthday to you, too, Gavin!
Thanks, Marion. It’s just too bad that people who are “sick” and running out if options can’t be in most of these trials. I mean, what do they have to lose? I understand the reasoning, but I just wish there were an “invisible” test group.
I actually don’t know about cc patients, but I have met with a couple of the colon(?) cancer patients, and except for dehydration because she won’t drink enough, we all seem to be doing well.
I have met cc patients, but their numbers weren’t good enough for the trial. I don’t understand that. If someone is sickly but wants to attempt the trial anyway (due to lack of options) I think they should be allowed to be a guinea pig to see if it would reverse the progression in severe cases. But the drug companies call the shots.Regina, you are cracking me up!! I also can get morbid. My favorite, when I know I’m eating something bad is “what’s it gonna do? Kill me?” Or “if it’s gonna give me cancer, too late! Already got that!” And as far as dating, I say if they want a long term relationship I’m a bad bet.
Seriously, tho, I believe CA19-9 falling represents less activity. Meaning shrinkage or stabilization.
Most of my “eruptions” are at the hairline or in the scalp. I do get occasional wanderers on my face. But it’s not too bad, so I guess I’m lucky. Mostly I can cover up with concealer. But with my hair falling out, I’m worrying about going bald. So I had a little talk with God the other day. Just to clear the air. I said I would totally rock the baldness if it came to that, but not with acne head. So he either has to let me keep my hair or he has to stop with this acne-like head! I’m hoping he listens!! lol
So far, I’m getting thinning hair. I’m hoping it stops at that. The trouble is, these drugs are so new no one really knows long term side effects. Unfortunately, the acne like eruptions seem to be fairly common, according to my onc.
But I like the theory that we are responding better! And I can say I am: 4mm shrinkage is not bad!! I will celebrate that, since I’m supposed to be holding steady on this drug!
Oh, and I live outside of Philadelphia, PA. But I could probably be talked into a day in NYC. I’ve never seen the tree lit up!I posted in the other section, but let me repeat… Great news to hear! I hope you get to transfer back to NY soon. We can start an “acne” club!! lol
Please keep us updated on the trial as so many of us follow these posts! Any new trials are of a lot of interest to me!Regina, how promising! And I figure my acne rash is worth it…I use the topical cream, but can’t put it in my scalp!
Please keep us all informed on how the trial goes, as many of us are interested in any of these trials. Your next scan should be great with the promising blood work.
Good luck with transferring back up to NY.Oh, Lisa, I’m sorry. I so wished for better news! And I don’t envy you for your upcoming conversation.
As for your options: there are so many and more every day. Keep strong and you WILL get through this!Hi BJ,
I, too, will add my welcome to our little club. None of us wants to be here, but it is a wonderful source of hope, support and information. I am at Fox Chase and love my “new” onc! I was being treated at Sloan Kettering for 2 years, and am also inoperable. I was on gem/Ox myself, and it worked great, but the side effects were bad, so we had to stop.
I was not on your current regimen.
Can I ask if you are feeling otherwise healthy? If so, you might want to check into the trial I am on at Fox Chase. Here is the info…http://www.wjgnet.com/1007-9327/full/v18/i21/2591.htm
Abstract # 2339: Prevalence of MET expression, activating mutations of KRAS and IDH1/2, and ROS1 fusions in cholangiocarcinoma patient tumor samples Exploring the c-MET pathway from a different direction is LY2801653, a small molecule, reversible oral ATP-competitive c-MET inhibitor. In addition to targeting MET, LY2801653 has been shown to inhibit the activity of ROS1 fusion proteins and MNK1 and MNK2, two signaling proteins downstream of KRAS. The study evaluated LY2801653 as a potential treatment of cholangiocarcinoma, a rare cancer that originates in the biliary tract epithelium and has a typically poor prognosis.
The study examined the prevalence of MET overexpression, activating single point mutations of KRAS and IDH1/2, and ROS1 gene fusions in intrahepatic and extrahepatic cholangiocarcinoma tumor tissues obtained from non-Asian (n=40) and Asian (n=60) patients. The majority of cholangiocarcinoma tumors expressed MET with approximately 50 percent of cases having strong staining (IHC score of 2+ or 3+). Overall, 25 percent of analyzed samples were positive for KRAS mutation, and mutations were more frequent in Asian patients. At approximately 60 percent of samples, G12D was the predominant mutation. For IDH1, the frequency of mutation was less than 10 percent overall, with R132C as the predominant mutation. IDH mutations were more frequent in non-Asian patients. There is no apparent correlation of MET expression with either KRAS or IDH1 mutations. IDH2 and ROS1 analyses are ongoing. The data suggest that inhibitors of receptor tyrosine kinases and their signaling pathways–such as LY2801653–may merit clinical evaluation in patients with cholangiocarcinoma.
Good luck, and please keep us posted on your progress.
Lisa,
Let me add my hello, too. It’s a bad way to meet people, but you won’t find a better group! There is so much support and help here. And I agree, it’s a “sucky club” but I have met some great people! And strong!
I am amazed at how quickly you got all this done! You did in one week what took 1-1/2 months for me in Feb-March 2011. No wonder your head is spinning.
Unfortunately, we do call this a roller coaster ride. It has many ups and downs. I tried to handle it, but eventually looked to medicine to help with nerves and depression. I have since taken myself off those drugs, but I don’t know what I would have done without my Xanax!
It sounds like you have a great team working with you, and that is a very important thing. I wish you well with the next few days especially, and will send prayers for “operable”.
