Stage 4 - liver mets disappeared

[SGNYC]

Congrats on your response. My DH had a complete response in liver to 5 rounds of Folfox, though they did do resection at time of colon/lung resection bc original met location meant only 8% of liver had to be removed and it allowed them to do pathology to confirm (scar tissue only). It is a very good indicator, which we were relieved to hear about and I suspect it means very good things for you as well. So great to hear good news here.

[henry123]

You probably fall in the category of medical miracles.
I can only recommend that you should do all you can to help your body.
Exercise, go on non animal - low fat diet ( follow Dr. Mcdougall ) , drink tons of fresh juices ( Chris beat cancer) , meditate and stay positive and happy.

[Rgp]

Hi all
I am looking for some thoughts/insights/experiences with maintenance chemo. My oncologist from DC area put me on maintenance chemo since I couldn't get a liver resection as my mets disappeared after neoadjuvent chemo. He said it's a no standard treatment and there is no evidence supporting it, but he has seen some success in some patients. The treatment is 5 days of Xeloda with two days off and he recommended it for the next 3-5 years. I asked him if I should take avastin and his answer was no. He said it's for people with active disease and since I am Ned, he doesn't want me to be on avastin. Anyways I am handing the Xeloda ok with some minor side effects like some tiredness.

Then he gave me the news that he is moving to Houston and I started looking for a new oncologist. Met with one from Hopkins, but she is dead set against the maintenance chemo. She is saying there is no evidence supporting it and she wouldn't take me on if I am to do the maintenance. She said she doesn't know if it's going to do more harm than good, so asked me make the decision. If I go with the maintenance, she wants me to find another oncologist who supports the maintenance. I am now confused what to do, whether to do the maintenance or not. Since Hopkins is major hospital and one of the doctors from there is completely against the maintenance, I don't know whether it's worth it. I am looking for some inputs from the fellow members here. Any advice on this is highly appreciated . Thank you all.

[mpbser]

Wow, it must be very difficult, hearing two very different opinions like that. I am wondering why Dr. Saltz at MSK had not recommended the HAI pump.

[Pyro]

I tried the maintenance chemo you were offered, it didn’t work, I had more Mets pop up, if I would have known at the time I wouldn’t have done it. Everyone is different, stage 4 is complicated and everyone’s is different. I’d probably wait and see but do not be surprised if it comes back, just enjoy your time now.

[Rgp]

Wow, it must be very difficult, hearing two very different opinions like that. I am wondering why Dr. Saltz at MSK had not recommended the HAI pump.

MSK doesn't do the pump if there is no evidence of disease. By the time I met with Dr Saltz, my liver mets had disappeared from Chemo. I had clean liver scans from last June.

[ginabeewell]

Given how responsive you were to chemo initially, I think personally I would opt against maintenance treatment - with the idea that if you are monitoring very closely and have any sort of relapse, you'll be able to catch and treat it successfully.

I've always assumed that I would be on some sort of maintenance chemo, so I'm really interested to be reading here that many top centers are recommending against it. I'd love to do a little more research into the data that is driving that position.

[Brearmstrong]

Timely post as I've been struggling with this same question the last few weeks. I've been NED for almost a year but have been on xeloda. My onc also says no to Avastin if no active disease and it caused a nasty pulmonary embolism when I was on it so I'm ok with his stance. However, xeloda has been increasingly very difficult for me. He has had to reduce dosage twice now and I've struggled to keep much needed weight on. My hand/foot syndrome has been extreme. I went from running marathons to having to use a cane. Dermatologist/oncologist gave me tons of different cremes but nothing has helped. I just had to take another 2 week break as my feet were so swollen and had lost so much skin that I was at real risk from infection. So frustrating as I don't even believe chemo works on my particular situation. It stopped my recurrence from growing but no shrinkage with folfiri and avastin. I wonder if I'm just feeling horrible most of the time for NO real benefit and won't change the final outcome of this disease.. then throw in there that onc's disagree on maintenance chemo and it's a real mind game as to what to do... Please keep us posted on your decision and how you make out.

[Milk Tea]

Same here. My husband is on maintenance chemo Xeloda plus Avastin ( Xeloda 10 days on, 10 days off and Avastin every 3 weeks) for two years. While his medical oncologist strongly insists on continuing this regimen to prevent recurrence (because of his extensive liver involvement with 12 lesions), his surgical oncologist ( his liver surgeon who, in my opinion, saved his life) thinks it's over treatment and wants him to stop.

Two years of accumulated Xeloda causes a lot of GI system discomfort and bloating, Avastin causes high blood pressure and high protein in the urine. Those side effects are definitely uncomfortable but they are somehow manageable and if this regimen prevents recurrence, my husband is more than willing to continue on.

We really don't know who to listen to between our two oncologists.

[Rgp]

I think it's institutional preference too. In the DC area, Georgetown is big on maintenance while Hopkins says no to it. And then there is MSK with the pump. I really wish that all these fellas had a talk between them and share there knowledge, thoughts and experiences. Its hardly happening now. Every body is kind of stuck in their own bubbles nowadays.

[Gravelyguy]

Late to the thread. I had liver resection after 4 rounds of Folfox plus Vectibix and all that was found after the liver resection was a very small necrotic mass 4mm x 4mm. The surgical notes stated that they could not rule out a complete response to the chemo. This was at Mayo Rochester. They did want me to finish with 8 more rounds of Folfox but there was never any talk of maintenance chemo.

I have been NED since the surgery which was in early October 2017.

Hope this helps.

Dave

[ginabeewell]

I found this article which looked at the benefit of maintenance chemo for different types of patients:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5844763/

I guess this would suggest that as a complete responder, you may benefit from it?

[Rgp]

Late to the thread. I had liver resection after 4 rounds of Folfox plus Vectibix and all that was found after the liver resection was a very small necrotic mass 4mm x 4mm. The surgical notes stated that they could not rule out a complete response to the chemo. This was at Mayo Rochester. They did want me to finish with 8 more rounds of Folfox but there was never any talk of maintenance chemo.

I have been NED since the surgery which was in early October 2017.

Hope this helps.

Dave

I am curious how did they know where to do the surgery on the liver as you has a complete response. Did you have a marker placed before the chemo? In my case the the liver surgeon went in to do the surgery, but decided against it as he couldn't find anything on the liver.
Thanks

[Rgp]

I found this article which looked at the benefit of maintenance chemo for different types of patients:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5844763/

I guess this would suggest that as a complete responder, you may benefit from it?

Thanks. Yeah this looks like I may benefit from it.

[Gravelyguy]

I am curious how did they know where to do the surgery on the liver as you has a complete response. Did you have a marker placed before the chemo? In my case the the liver surgeon went in to do the surgery, but decided against it as he couldn't find anything on the liver.
Thanks

Rgp

They used the pre chemo MRI to guide them. They ablated a bigger section on my deeper met and it took them 3 tries before they got the remains of the met closer to the surface.

Dave