I'm back - PET results and more chemo
While my CT didn't show anything at all, the PET showed the 3 nodes had shrunk a lot, and the metabolic activity had slowed, but the cancer is not completely gone. The report says it shows current treatment is working well. The "cyst" that the CT showed on my liver did not show on the PET. So I have nothing new, and the 3 nodes are shrinking and don't have much activity anymore! We will do another PET in 2 months. No point in doing CT, as it doesn't show my issues.
My oncologist says the plan is to try and push me through 12 FOLFIRI w/Avastin. Then go on maintenance chemo for life of 5-FU. With little breaks here and there for vacations or family things. I'm not thrilled about that idea. I truly think chemo will kill me faster than cancer will if I stay on it permanently. I plan to try to get through the 12 FOLFIRI and if I'm clear, take a chemo break, with monthly CEA monitoring and 3 month scans.
I knew I should have been on 5mg of Coumadin, but we wanted to be safe since I wasn't being monitored for 9 days. On 2.5mg of Coumadin my INR is just at 1. Too low. So now I'm bumped to 5mg. The pain did finally let up about a week ago.
Due to my allergic reaction to Irinotecan last time, I got double Decadron and double Benadryl via IV at the start of infusion. I slept through the whole thing. They ran it slow, just in case. It was a long, boring day for my daughter with me sleeping. I guess this is what is to come. No more getting work done from the infusion room - chemo day will be nap day.
I was disconnected this afternoon. Tomorrow I have to go to the hospital to get my Neulasta shot. Monday I have to get my INR checked. And probably have my port flushed again. Today the nurse couldn't get any return again and was concerned. Said I need TPA to clean it out again.
I sure was spoiled with a couple cycles of not having to go anywhere - disconnected at home, Neulasta at home, no labs needed till next chemo day. Now I'm back to running for shots and labs again. Yuck.
The good thing is now that my onc is of the mindset "chemo for life" he doesn't fight me about breaks. I just had a week for the Mexico trip. I got tx #5 now, and I'll get #6, and then I'm taking New Year's off too, another week break. I think I can get through the 12 FOLFIRI with these little breaks. Otherwise I don't think I could do it. Chemo and I just don't mix well. I really wish I could have surgery - I do much better with that.
Comments
-
Scans
The scans sounds like it turned out great with the new chemo you are on. Glad that you had a great vacation. You really needed that break. Good luck on upcoming chemo.
Kim0 -
Progress
Hey, Kathryn.
I'm so glad you're showing progress, but I can only imagine how it would feel to be told I would have to have chemo for life. Not what anyone wants to hear! But I know it's better than "We can't do anything more for you."
Enjoy your breaks when you get them, and if you need any company on your trips, just ask. I think we could work something out. *grins*
*hugs*
Gail0 -
Seems like good newstootsie1 said:Progress
Hey, Kathryn.
I'm so glad you're showing progress, but I can only imagine how it would feel to be told I would have to have chemo for life. Not what anyone wants to hear! But I know it's better than "We can't do anything more for you."
Enjoy your breaks when you get them, and if you need any company on your trips, just ask. I think we could work something out. *grins*
*hugs*
Gail
Kathryn,
It's nice to hear the tx is working for you. Also good to find out you were able to take a break in Mexico. Sorry to find out you may be doing chemo for life, but, at least you have atx that seems to be moving you in a positive direction. Happy holidays.
Don0 -
This sounds pretty good. The
This sounds pretty good. The chemo is working!! Sorry the new routine is more cumbersome. I'm gonna scream if you start having port problems again.
"Chemo for life" is tough to hear. I like your plan. Get through the **** Irinotecan as best you can on a time frame that works for you. Then see where you are.
Stay strong.0 -
mixed news
Hi Kathryn,
Well, it's mixed news- the scan really is good news, overall! I know about the chemo for life situation- that's me too. If I could even get anything at all to start shrinking, I'd be thrilled, but we do what we have to do, right?! I wish I could have surgery to get some of the stuff out, but like you- on with the chemo I go...
I know that if it were me, however, if I were told chemo for life with a 5FU pump, I would insist on Xeloda. Even with the Xeloda issues I've had, I would have a very hard time having that dang pump attached to me all the time. It seems like you have done better in the past with 5FU though, am I right? Maybe you can even switch off at times.
Sorry about having the long irinotecan infusions with the Folfiri, but time passes quickly when you're snoring (hopefully not) away!
Hang in there, Kathryn! We'll keep checking in with each other.
Hugs,
Lisa0
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