kris00j
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Haven’t posted for a while on here. Got thru the first week of Xeloda. And I’m on 4300mg a day. I forgot to double it.
Made it thru with just a little additional burning and tingling in the hands and feet.
Start cycle 2 this morning. Hope it goes as well as the first cycle! No nausea, no diarrhea, a little loss of appetite, some assorted hives that were bearable. And the tingling. I can handle all of that. I’m glad I got the week off. Gave me a break so hope the side effects aren’t too cumulative.
I had my Gemzar infusion yesterday. It’s pretty much nothing. BUT I did wake up in the middle of the night and think I was going to get nauseous. That was the first time this has happened. Usually Gemzar just makes me lazy-tired. Hopefully it was just something I ate. Like the bowl of Fudge Mint Cookie ice cream! Ice cream is my downfall, and WOW! was this good!!!!Jeff:
It’s great to hear that you are getting good news! And maybe you have something there with your “alternative treatment or non-treatment”, however you want to put it.
I agree with you about the pain meds. I DO take sleeping pills, because I’ve never been much of a sleeper, but since the diagnosis last year, sleep is definitely elusive. I take an omeprazole every morning because I have a pump in my abdomen, and I take an occasional (2-3x a week) Tylenol for pain. That’s my regular amount of pills. Oh, yeah, and the chemo pills every other week. You see, I’m pretty much following the “norm”.
I hope you are documenting what you are doing, and that some doctors are paying attention! Especially since it seems to be working better than chemo. Too bad your “super powder” maker has disappeared. He or she might have a key to defeating this horrible disease.
As far as your blog: I have one on caringbridge.org. It’s really easy to sign up and start typing. And you can upload pictures. And read comments. If you want to see mine, it’s at http://www.caringbridge.org/visit/krisjacobson
Good luck and God bless! I want to hear more good news from you!CM: The tumor in my liver was about 4-5cm when discovered and when I went to Dr. Fong at Sloan Kettering in April of last year he said it had probably been growing for about 9 months. But like everything else about this disease, it’s a guesstimate and I think each person is different.
Dr. Sonneday: welcome to the board. I’m sure we will all benefit from your knowledge.
Personally, whenever I talk to anyone who is having gastric issues, if they are having tests done because of the extent of their issues, I always tell them to get a blood test and have their bilirubin and CA 19-9 levels checked. So far, if I’ve seen them afterwards, things have been fine. But I would rather err on the side of caution.
Sally:
I don’t see this mentioned. I just started Xeloda last week, and was astounded at MY copay!!! I am on COBRA from my previous job, and it expires in Oct. When I will be eligible for medicare/medicaid. I can’t remember. The disability one. I sure hope they cover enough because my hospital and doctor bills are high enough already. One of these days they MIGHT get paid. I need to win the lottery first.
Anyway, I digress. For the Xeloda, contact Genentech. As long as you are NOT on state funded insurance and don’t make $100K/year, you can get assistance from them. (they make Xeloda). They are covering about 80% of my copay, which brings my copay down to about $30-40/wk, which is MUCH better than it was.
You can look them up online. It was easy. About 20 minutes.Sally:
Glad to hear some good news!
Unfortunately, the chemo does tend to damage any “weak” cells in the liver, also. As I stated in another post, the oxilaplatin caused lesions to appear in my liver while I was on it. They did go away after I finished my oxy cycles.
And, unfortunately, I think most of this is a guessing game, even for the oncs. This cancer is being researched, but there is not enough information out there for a standard protocol. I think the oncs “guesstimate” based on what they hear, read, and how their patients handle the treatments. I also think it’s harder for oncs and researchers to get a handle on treatments, because what works for one person may not work for another.
I hope she gets thru this next cycle and starts to heal! And that everything stays stable for her.Trevor:
As far as the CA 19-9, I have noticed that mine occasionally goes up and down. Unfortunately, mine has been steadily rising the last couple of months and it turns out the tumor has grown a bit and lymph nodes are now affected.
I just started on Xeloda by pill form. I do not know how good it works yet, and won’t have another scan for at least 4 weeks, but it is easy and maybe you can ask your onc about it? It’s expensive, with very high copays, but Genentech will help if you are not on state funded insurance and if you make less than $100K/yr. I am suggesting this because maybe you can do both: get the Xeloda in pill form and go on your trip. Of course, if you have side effects, you would have a problem, but it might be a win-win.
I hope you get to go on your trip, athough I can understand your concern about not receiving treatment for so long. Whatever decision you make will be the one for you.Matt:
Congratulations to your sister for a successful resection! May she continue to heal well and quickly.I guess it’s time to close this thread. Hopefully I get to start another one here soon. Today was supposed to be the day of my surgery Unfortunately, due to the fluid in the lungs, and probably the growth in the tumor, it was put on hold. Fluid is way down, but now I’m back on chemo (see other thread under general discussion) to try to get the tumor and lymph nodes shrunk again. Hopefully in a couple of months I get to post my new resection date.
I’m right outside Philadelphia. I’ve been thru Phillipsburg many many times. It’s prob a litte more than an hour away. I will actually be in Plumsteadville on Sat. morning, as long as the side effects from the Xeloda stay away. That’s not far from you. I have meetings once a month in Plumsteadville on Sat. mornings, provided I feel well enough to go to them. Maybe one of these Saturdays we can meet in the middle after a meeting? I’m hoping to have my resection in June (it was supposed to be today) so June and July are probably out…
I used to live near Morristown also. I didn’t know they had a cc dept. If not, I hope your new onc talks to the old one because this cancer is so rare. I will keep you in my thoughts and prayers that you beat this again…Nancy:
I can’t help you with the chemo. I just started on Xeloda. I get Gemzar every 2 weeks, which just makes me tired for a day. Xeloda I’m not sure of yet.
I am so sorry you have to go thru this again.
Where do you go for treatment? You aren’t that far from me. I travel to Sloan Kettering in NYC.Sally:
I’m sorry for your sister’s newest bump on the roller coaster.
I will say that when I was on oxaliplatin, I had a few lesions on my liver that came and went on the CT scans.
I hope it turns out to be nothing. I will keep her in my prayers.Fatema: I just started on Xeloda. They did tell me that a cough is a side effect. If the cough is really bad I would be pushing for clearer answers.
My oncologist rarely examines me. That’s what her nurses and practitioners are for. They tell her what they found and talked to me about and I usually only get about 5 minutes with her. Unless there’s a problem.
