kris00j
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Thanks. I’m extremely nervous about this one. I don’t know why… maybe because in March I got so much bad news at one time so now I’m nervous.
Just praying that whatever plan God has for me includes good news and me living for a while longer!!!At least this time I only have to wait a day. Last time it was a whole week, and it drove me crazy… I just pray Dr. K. took my rant into account last month and has a plan in place when I go in on Wed. The one thing I DON’T want to hear is “I don’t know what to do with you.”
I would assume it’s from the chemo. I was told one of the side effects from Gemzar was flu like symptoms.
Lauren:
My CA19-9 jumps up and down all the time. I had my prep surgery last April 2011 and it rose to over 1500. Usually it fluctuates between 100 and 400 or so. If she recently underwent any procedures, tho, it could mess with the numbers. And if the bilirubin was up, it could also play with that number. Usually when my CA number is up so is my bilirubin.
I hope the treatment works so she can get surgery on that #$%%^^^ tumor also!!!Thanks Pam, Lainy and Lauren.
Lauren: the CT scan will be in Basking Ridge NJ and the dr. appt. is in NYC at MSKCC. Both day trips. Hopefully the weather is nice on Tues. so I can ride the scooter and save some gas!!!I am so happy to hear the good news! That is so great to hear and it gives hope to all of us waiting to be able to do something!
I can’t give you much info about your cell structures, but I can tell you that the original tumor in my liver is a different cell structure than the mett’ed cells in my lymph nodes. They react differently to Xeloda and Gemzar. They have not done a biopsy on the lymph nodes, because I feel there really is no need and I guess neither do the docs. But they are different cell structures. My surgeon explained that quite often when cc spreads and lands elsewhere, the cell structure changes. WHEN I get my surgery they will do a biopsy and I will find out specifics. As for now, keep ’em closed in and no chance of spreading further…Tiff: Like I told you on Saturday, you got great news!! And I am jealous!!! But so so so so happy for you!! You have to post the good news so we all can have some hope.
Love you LOTS and can’t wait for the next bit of news.Lisa:
I am nervous for you, too, but I haven’t had chemo since we decided the Xeloda was not doing anything. That was end of May, early June? I have had nothing but the radiation since then. I PRAY the radiation worked since nothing else is happening.
Good luck with the tests in Oct. I go Sept. 5 for my results.dmj4ctj:
From my personal experience: I have been denied chemo when my bilirubin was 4 and I have never been jaundiced. And different chemos work better on different tumors. Some better than others. Oxy worked wonders on my tumor.
When I was diagnosed, I was told the tumor was unresectable, but if it shrank, we could revisit the decision. I was finally told it was resectable, but unfortunately I ended up with pneumonia so the resection was cancelled. The tumor grew just enough and metted to the lymph nodes so I was denied surgery again. So, to answer your question, yes, chemo can be denied or adjusted based on bilirubin. And prognoses can change. Unfortunately, I have no knowledge of stents, so can’t help you there.
If I were you, I would decide how much I like the dr. Based on his decisions, do you feel comfortable with his answers? If not, get copies of the latest couple of CT scans, etc., blood work and whatever else you need and go see someone else. Then make an informed decision based on the new dr’s opinions.
Personally, I do not like my onc. I have lost a lot of faith in her. Unfortunately, I have her pump implanted in my abdomen so it would be very difficult to change drs. I LOVE LOVE my surgeon, even if he does say right now surgery is not an option. I’m hoping that in a couple of weeks my new CT scan will show I can have surgery. If not, we try another chemo and try to get things to shrink more.
Good luck with your decisions and keep us posted.I used the Eucerin with urea in it. Nonstop. I wore socks the entire time to keep the lotion on and I put so much lotion on my feet were white. I lotioned my hands as much as I could and just tried to keep the lotion on. I also got the moo lotion and tried that after my treatment was over (that’s about when I got the package). It worked while I was on treatment. I had burning and redness but no peeing. But I got lazy after treatment. After about 2 weeks, the burning was less and I wanted to wear sadals. So I quit keeping my feet lotioned. They eventually peeled So I went bck to lotion until the peeling was done. A few days to a week. Now it’s over and I can wear sandals again.
I called my doc a few months ago because I couldn’t take the anxiety and stress anymore. She prescribed Paxil and Xanax. I took 1 Paxil and hallucinated so badly that I won’t touch it again. I do take the xanax, but only as much as I need. I can take 4 a day (0.25 mg) but I only take 1 or 2 a day, depending on my anxiety level.
I tried ativan, but all it did for me was make me cry.
Good luck.I, too have heard things about CTCA. My opinion is that if you want to stay local, you contact your insurance company to see if the facilities accept your insurance, etc. Then go to BOTH and see which one you like best. We encourage 2nd opinions around here, and everyone’s experiences are different.
So talk to every facility you can, and compare the oncs, plans of attack, etc. THEN make your decision. But make sure your insurance will cover it. It’s expensive enough without having to worry about out of network expenses, too.
CTCA is not a preferred provider under AETNA.Lauren:
I LOVE my port. I had it put in after my first chemo treatment. I wasn’t going thru that again! It makes life so easy. Used for blood work most places, accessed for CT scans, etc. and then there’s chemo.
It’s not as easy as you would think. I thought it would be easy 1, 2, 3 and then I would feel fine. I was tired the next day and worn out. It is considered a surgery, so just to warn you and your mom that she will feel the effects! But way worth the day or two of discomfort. And make sure she has her card with her if she checks into any other hospital. To prove it’s a medi port and can be used with contrast for MRIs. Or she’ll be getting an i.v.
I hope you get the Fox Chase Dr. to cooperate with MSKCC. It really would be easier. Maybe if you do, I can talk to the doc and get the nurses trained in my pump so they can fill it. I LOVE Dr. Lee in Priceton but 15 min. is much better than 1 hour….Derin:
I had stereotactic. I got the “poor man’s” (I like that) scan to make sure I was lined up, then the machine did little movements and then 30-40 second bursts. Then movement, then 30-40 second burst. About 10-15 times. Took about 20 min. total when the machine wasn’t acting up.
I was just a little tired. Not too bad. I have a few “twinges” in my abdomen and stool issues, but I’m figuring the twinges mean the radiation worked!!!!!
It hasn’t stopped my poker or karaoke, but it did make me cut down on the motorcycle a little, which I had already done… but I get my scooter back today so I can ride again!! Look out world!
BTW, my saying is now that I’m not gonna stop ’cause I don’t want “it” catching me!!
Oh, and I take the train into NYC from Trenton. Much easier on me. It takes a little longer, but the drive is only 45 min or so. Park in Trenton at station, then train, then subway. It lets me out at 53rd and 3rd for offices. It’s really easy. If you decide to try this, or know when her next NYC appts are, maybe we can meet and have lunch across the street… I have an appt on the 8th. Then again on Sept. 5th. Dr. Kemeny, 5th floor.
My phone # is 267-625-9873.
