Decisions about liver treatment

Varmint5

Hello everybody. This week has been very eventful as far as my daughter's treatment options for her liver. She started on Folfiri last week after LAR recovery - switched from Folfox because CEA was climbing prior to surgery.

So we have consulted with two liver surgeons this week, both well-respected and recommended. Both have reviewed my daughter's case (33 year old new mother with stage IV, multiple liver mets). They were both sent the original CT scan and the most recent from about 4 weeks ago.

We got a call Tuesday from the assitant of the doctor at the big city NCI hospital and this is what she said, in a nutshell. She said that the most recent CT shows dramatic tumor shrinkage and cell death despite the CEA going back up, so this doctor recommends continuing chemotherapy until it is no longer working and then consult again. At that time there would be three possible options: resection, tumor ablation, HAI pump with HAI pump being the most likely. They said to check back with them in three months with a new CT scan. Continue what we're doing for now.

Wednesday we saw another liver surgeon, in person. We liked him very much - head of transplant team at largest hospital in daughter's city at other end of state. This cancer currently in application process for NCI status. This doctor said that my daughter has good liver function but too much tumor, to many tumors, to leave enough liver to resect. He advises against the HAI pump due to increased risk of liver damage - wants to keep liver as healthy as possible in event of future resection and need to remove lots of liver. He wants her to continue with Folfiri and do Theraspheres now with goal being eventual staged resection. My daughter and her husband are leaning toward this option for several reasons, maybe foremost that it can be started now while she is on chemo instead of waiting. Also, it is local and less hardship for these young new parents.

Her oncologist wants her to get a couple of Folfiri treatments in before doing Theraspheres to make sure the tumors are responding - CEA is good marker for her. He doesn't want to start another treatment without knowing this. He said that the Theraspheres could influence the CEA and it would not be clear which was working, the chemo or spheres, so he wants to be sure she is on the right chemo first. This makes sense to me.

I looked this surgeon in the eye and told him that our goal is a cure and asked if he would join our team with this as our goal. He looked me in the eye and shook my hand and said yes. We really liked him. He thinks outside the box. He also said that HAI remains an option after Theraspheres if needed, but HAI first then Theraspheres would be much more risky.

Are any of you familiar with Theraspheres? I know Suzanne Lindley had Sirtex spheres. Also, I really value the insight of all of you here and would appreciate knowing what you think of all this, how comfortable you would feel.

Thanks!

Sandy

PhillieG

Hi Sandy
I'm not familiar with Theraspheres at all. I'm glad the meeting with the other oncologist went well.
It seems there are (almost) always options for people.
This is all great news! Thanks for posting the update.
-phil

janie1

PhillieG said:

Hi Sandy
I'm not familiar with Theraspheres at all. I'm glad the meeting with the other oncologist went well.
It seems there are (almost) always options for people.
This is all great news! Thanks for posting the update.
-phil

2 opinions
Sandy, glad you were able to get 2 opinions. Had been thinking about you and your daughter.

There was someone a couple of months ago that posted about Theraspheres. They had success with it. Maybe they will see this.

I have an HAI pump. It's too soon to really know what kind of outcome there will be. Later, I read about Theraspheres and wondered the same thing. In what order.... which should be done first, or which one to go with, if only one option would be used. I think it is good to have either/both of those options. Sounds like doctor #2 is thinking outside the box. Not sure about doctor #1 plan, but he is at an NCI center.

I did have elevated liver enzymes after only 2 times using the pump....so didn't get a whole lot of time out of using it. Continued on with systemic (folfuri), though. But, when the liver enzymes came back down to normal 3 months later, the onc and surgeon thought it was time to do surgery anyway. The first post-op scan showed another possible new spot (having mri next week), but the pump is still in place, so maybe can still use it.....the liver enzymes elevated again due to extensive surgery in January, but they are coming down (almost normal). Tentative plan is to ablate the new spot...... but I am going to ask about more surgery. I had so much disease.....I'd like to see what they say about surgery.

Sorry, don't know more about theraspheres.

I'm curious if they are sure Folfox stopped working. If the tumors have drastically shrunk, then is seems it was working great. The CEA often goes up during chemo because dying tumors may emit (i think a protein) in the blood, which elevates the CEA. I would want to clarify about the folfox. Folfuri is good, too, but I wondered if they rushed into saying the folfox stopped working, in case, it is needed for a while down the road. Just thinking.

Varmint5

janie1 said:

2 opinions
Sandy, glad you were able to get 2 opinions. Had been thinking about you and your daughter.

There was someone a couple of months ago that posted about Theraspheres. They had success with it. Maybe they will see this.

I have an HAI pump. It's too soon to really know what kind of outcome there will be. Later, I read about Theraspheres and wondered the same thing. In what order.... which should be done first, or which one to go with, if only one option would be used. I think it is good to have either/both of those options. Sounds like doctor #2 is thinking outside the box. Not sure about doctor #1 plan, but he is at an NCI center.

I did have elevated liver enzymes after only 2 times using the pump....so didn't get a whole lot of time out of using it. Continued on with systemic (folfuri), though. But, when the liver enzymes came back down to normal 3 months later, the onc and surgeon thought it was time to do surgery anyway. The first post-op scan showed another possible new spot (having mri next week), but the pump is still in place, so maybe can still use it.....the liver enzymes elevated again due to extensive surgery in January, but they are coming down (almost normal). Tentative plan is to ablate the new spot...... but I am going to ask about more surgery. I had so much disease.....I'd like to see what they say about surgery.

Sorry, don't know more about theraspheres.

I'm curious if they are sure Folfox stopped working. If the tumors have drastically shrunk, then is seems it was working great. The CEA often goes up during chemo because dying tumors may emit (i think a protein) in the blood, which elevates the CEA. I would want to clarify about the folfox. Folfuri is good, too, but I wondered if they rushed into saying the folfox stopped working, in case, it is needed for a while down the road. Just thinking.

I agree, Janie
I have wondered the same thing about the Folfox. Her CEA had risen twice - 200 points, then 300 points) with the last two treatments of Folfox... and it raised a lot in the 7 weeks since her LAR surgery on the day they started the Folfiri (1200 points). I would really like for them to closely review the CT scans. She has a tumor that "overproduces" CEA. At least it is still down 4,000 points from where it was when we started. Now waiting to see what it did with the first Folfiri treatment but the onc said not to worry if it goes up at first. It did that with the Folfox too.

I'm sorry you didn't get more treatments through your HAI pump but it sounds like you had successful surgery despite that - good! I hope you get a good plan for treating that new spot and that it works. It seems that some people have to beat this monster down quite a few times before getting control of it. I know ablation can be very successful too. I know a guy who had a resection of his larger tumors and ablation of the smaller ones and they have never come back.

Thanks for the info and best of luck to you in your treatment. I'm glad you got to have that surgery.

Sandy

Varmint5

PhillieG said:

Hi Sandy
I'm not familiar with Theraspheres at all. I'm glad the meeting with the other oncologist went well.
It seems there are (almost) always options for people.
This is all great news! Thanks for posting the update.
-phil

Thanks, Phil
I'm glad the meeting went well, too. I was very apprehensive but we really, really liked the doctor and we all just feel a real sense of peace and optimism with his plan. I hope and pray these feelings prove to be right!

Sandy

here4lfe

Going for sir spheres
All chemo has failed but there are new treatments. My wife goes for a consult on sir spheres which is radiation direct to the liver tumors
Good luck

Best

Varmint5

here4lfe said:

Going for sir spheres
All chemo has failed but there are new treatments. My wife goes for a consult on sir spheres which is radiation direct to the liver tumors
Good luck

Best

Good luck
The liver surgeon told me that Sirtex spheres and Theraspheres are essentially the same thing, just different brands. Both Y90 radiation. I wish your wife success with this procedure.

Varmint5

here4lfe said:

Going for sir spheres
All chemo has failed but there are new treatments. My wife goes for a consult on sir spheres which is radiation direct to the liver tumors
Good luck

Best

Good luck
The liver surgeon told me that Sirtex spheres and Theraspheres are essentially the same thing, just different brands. Both Y90 radiation. I wish your wife success with this procedure.