Liver cyberknife and topotecan

lindaprocopio said:

(((Diane))) How can they say a YEAR of topotecan?
I'm confused that the course of the chemo is so prolonged, and is it etched in stone regardless of monitoring scans that may show remission? Or are they looking at the topotecan as a maintenance drug to hold you stable? I imagine I will be on topo in August, after the recommended 3-week-wait following the 2nd half of my radioembolism.

I know how you feel about the hipec, the same is true of the radioembolism I had Wednesday; it is more effective if done EARLY in liver mets before they get as extensive as mine. But since SIR-Spheres are only conditionally FDA approved, it is usually only offered late stage when all else has failed. But in other countries it is used earlier in the cancer journey and proven to work better. (And my chemo oncologist would NEVER have suggested it! He feels it is 'OVERLY AGGRESSIVE' and I know he wouldn't be happy to learn that I am feeling so crappy when he has worked so hard to successfully maintain a high quality of life for me.) Sometimes you have to make a big move, just so you know you left no stone unturned. Even if I'm not winning this battle, I want to know that I gave it my best shot.

Have they ruled out radioembolism for you? It's no walk in the park. I had to sit down 3 times during my stroll of my gardens this afternoon; I am that weak. The 20 pills a day I have to take for the next week make me endlessly queasy although I am happy to report that I am now keeping them down. I never had to take Zofran or Percosets with any of the chemos I've had, and today I took both on TOP of the 20 pills. But I feel better today than yesterday and can see that I am on the mend from the surgery, just 2 days out from it.

I may wait until LATE July to have the left side of my liver embolized, instead of early July. I put money down on a big beach house last November for a mid-July family vacation, & my interventional radiologist believes a week at the beach, while feeling GOOD, is important. He doesn't want to take the chance that I will feel crappy over my vacation. His argument is that there is 10 times more cancer in the right side of my liver that we just treated than the left, and a couple extra weeks wait isn't that big a risk. Who knows how many beach weeks are left in my life?, so I'm taking his advise. He doesn't really sound that 'overly aggressive' to me!

Live in the moment, dear Diane. This wedding is the best medicine for you; be hsppy!

lindaprocopio said:

Rosey, on the delay in doing the radioembolism....
CT/PET scans picked up the liver mets when they were tiny, and the continuing disease progression in my liver was being monitoted with a CT/PET every 2 months. I have been in continuous chemo even before the liver mets showed up; we were trying to get them knocked back. Because I have cancer mets in lymph nodes in my armpit and a para-aortic nodes near my kidney/spine, my oncologist felt I needed to stay on systemic chemo to attack the cancer everywhere in my body. When you move to radiation options, you have to ignore your other cancer elsewhere outside the radiation area. We still kept hoping one of the chemo drugs would work.

My oncologist also balances his treatment decisions with 'quality of life' concerns (once it is determined that it is no longer realistic to go for a cure); and has done a wonderful job of keeping me symptom-free and with almost no side effects (other than fatigue & baldness) throughout the 2 1/2 years I've been under his care. Even with such advanced cancer, I felt wonderful and healthy andd happy over 90% of the time. Radioembolism is VERY experimental, even though it's been done 18,000 times worldwide. But it is only conditionally FDA approved in this country, and only for primary liver cancer and colon cancer with mets to the liver. You can see why he wouldn't rush to try something that might not work and that would make me feel as LOUSY as I feel today. But we all did our research and he let me roll the dice. Chemo just doesn't seem to work on me; we have little to lose other than precious days of my limited supply where I could be feeling great instead of how crappy I feel today. But I do feel better than yesterday and each day I think I'll continue to improve. I have to take 20 pills a day for a week, post-surgery, and I am counting down the days until that nauseating pill regime is over. By then I'll no longer be radioactive and that should allow me to my old self again.

A new retrospective study of women with breast cancer and liver mets who were treated with these SIR-Spheres was released yesterday that confirms my opinion that this was my best shot:
http://finance.yahoo.com/news/Fox-Chase-Cancer-Center-Study-bw-2791531602.html?x=0&.v=1

Double Whammy said:

Diane
It sounds like the topotecan is nasty stuff. I know with the wedding date approaching you want to feel as well as possible and hope the down days can be planned around the date so you'll be at your best. Regardless of why you did so much ahead of time, it was wise.

A year sounds like a long time to deal with these side effects and I hope they can be managed more effectively. So sorry you're going through this. I well remember your HIPEC and was in such awe of you for enduring it and coming out like a champ. Sounds like it did what it was supposed to do where it was supposed to do it, but there were nasty cells elsewhere.

Did I say how much I hate cancer?

Sending hugs and prayers to support you through this.

Suzanne