Advice? High liver enzymes-travel between chemos makes worse?
Hi all of you smart and knowledgeable stage IIIers! (and anyone else that has good advice)-
After FEC100 x 4, I have now done 10 of 12 weekly Taxols. I am also on the ALTTO trial and am taking 3 pills of Lapatinib (Tykerb) every day. When I started the Taxol/Lapatinib part of my treatment, I had high liver enzymes (ALAT-or maybe ALT in English?- was 130) and we had to wait a week until they came down to 100. After 6 weeks, they were up to 165, then down to 100, 109 and this week up to 130 again. The trial nurse says that if they don't come down next week, I may have to go off the trial and switch from Lapatinib to Herceptin (it is the Lapatinib that can be hard on the liver).
I have also had some shortness of breath which seems to get worse 3, 4 and 5 days after the infusion day and has gotten worse in the past couple of weeks. I had to haul myself up 2 flights of stairs and I was panting so hard that a student asked me if I had been jogging! On my bad days, it feels like there is something heavy on my chest and that I can't really get a full lung of air. That said, I feel pretty good the 2 days before and 2 days after treatment.
So what I need advice on is this: my boyfriend and I were hoping to get away from freezing Oslo for 4 or 5 days between chemos and fly to sunny and (relatively) warm Barcelona for a holiday. Regarding the shortness of breath, the doctor said I could travel if I felt OK but to not travel if I wasn't feeling well. My problem is that we would leave this Friday, day 3 after infusion, and before I would expect to be feeling badly. As for the liver values, the trial nurse said that there was nothing I could do about them and that I should just live as normally as possible. She said I could travel.
My main concern is the liver enzymes- is it true that there is nothing I can do? I really want to stay on this trial, so if staying home in Oslo will help to go down, then I'll stay home. But on the other hand, if it makes no difference, it would be silly not to be warm while I'm eating tapas in the Ciutat Vella! The next concern is the SOB- has anyone else had that with Taxol/Lapatinib? Is there anything dangerous about it? The onc said my lungs and heart sound fine. But I would really rather not have to go to the hospital in a foreign country, what with the language and insurance problems....Otherwise, my blood work has been fine.
So what do you all think? I feel that I have only this one time to beat the cancer so it never comes back, so I usually prefer to be cautious about things. But it would be silly to be overly cautious if it doesn't help anyway. Barcelona is about 5 hours flight away and we can wait until tomorrow to buy the ticket and book the hotel. Thanks for helping me decide!
Comments
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OK, my totally unprofessional opinion is, if you feel well enough to go, go. A trip to Sunny Spain would probably do you more good than harm. Enjoy!
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FYI - Taxol can screw up liver enzymes, and does in about 20% of patients. Mine are also elevated, but not as much as yours.
So I am wondering if you might want to finish Taxol prior to making a final decision about the trial. BTW - they are most likely measuring toxicity, so your information is valuable to them.
And if you can get away.....do it!
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I agree about going away if you can. Enjoy!
As far as the insurance - when I travel I always get travel insurance. Since I have asthma I need to get one that's a little more expensive than the norm since I need for "sudden onset of a pre-existing condition". I'm sure there's something similar in Norway.
Leah
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When I was on chemo liver enzymes went crazy so my cholesterol and I was on Zocor for at least 10 years now.
DR wasn't concerned but I don't know the numbers.
After treatment everything went back to normal again.
I hope the same thing for you krcII
If the DR says its okay and you are feeling comfortable to fly 5 hours it is a choice you have to make.
Sheila
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When I was on Taxol I had SOB. I was also anemic, though...so not sure what caused the SOB, low iron or Taxol. My advise (for what it's worth)..go on vacation as long as you are feeling up to it. If you're going to have SOB ..where would you prefer to have it? Sunny and warm? Or cold?
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Thanks everyone for the great advice! I was almost convinced by you all that we should go but there was still something holding me back. I finally figured out what was bothering me- my main concern is to stay on the trial that I am on (ALTTO) and I need to have lower liver enzymes next week in order to do this. If I do have to go off the trial next week, I want to know that there was absolutely nothing else I could have done to make my liver enzymes lower. So, logical or not, I feel that by staying at home I have more control over things. There very well may be an element of Lutheranism here- I certainly can't be doing everything possible if I am enjoying myself!- but there you go, that's how my mind works..... So, bottom line, I would always wonder if the trip had anything to do with having to go off the trial (in the worst case next week).
But thanks for being so generous with all your comments and advice! In the end it did help me to clarify for myself what my worries really were. Cheers to Barcelona in a couple of months!!
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Well, that's a great "end of chemo" trip you can have! Good luck withn your enzymes....
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So that called Lutheranism! I like that. It works for me having been brought up Lutheran and 3rd generation Norwegian.
I wasn't on the boards the last couple of days so I missed your window of decision making. Personally, I think you're doing the right thing by delaying. I went on a very short 2 day trip to Vancouver to see the grandson and it really wiped me out. It really was an easy trip (took the train, daughter met us so we didn't have to figure out transit system, etc) but it doesn't seem to take much stress to wear me down while on chemo.
Enjoy it once you're done. Celebration time!
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