Hi. I'm so sorry about your diagnosis. I was kind of where you are 8 months ago and I've learned quite a bit. I wish there were a way to call you but I guess we shouldn't leave phone numbers on this forum? I'm hoping the lesions in your liver are resectable. (Mine are not.) In hindsight there are some things I would do differently if given the chance. I'm not a Dr. but I do have a perspective that may help you and I sure would like to help. So here goes:
I have been doing chemo for 8 months now in the hopes of shrinking the tumors in my liver enough to be able to have a liver resection. At first the chemo was shrinking the tumors nicely but as time has gone on 2 things have happened: 1) My tumors have started to be resistant to the chemo and they are starting to grow again. 2) I am unable to have 2 of the top line drugs that were working before because the cumulative side effects have gotten so bad.
So now at this late stage I am about to have an HAI pump installed that will pump chemo directly into my liver. Because your liver metabolizes all the drugs, the HAI pump allows you to get something like 400 X as powerful chemo sent through your liver with minimal side effects. I live in San Antonio and as yet, we don't have a program for either the surgery to have the pump installed or to administer the chemo into the pump. My group of Drs. have hired a Dr. who will be setting up this program in the next few months. But I can't wait for that so I am heading to MSK in NYC to have surgery and get this process started. The hope is that the pump chemo in combination with more regular chemo will shrink the tumors in my liver enough for me to have them resected. Even if that never happens, they tell me that the pump chemo is going to be a much more reliable way to control the growth of all these tumors in my liver going forward.
So what I would like for you to learn from me is this: I WISH, I WISH, I WISH so much that I had known about the HAI pump from the beginning. I can't help but feel like if I had been able to get the pump chemo along with the top line drugs that were working so well early on, maybe my liver tumors would have become resectable much sooner and not only would I have had a better chance of living, but maybe I wouldn't have had to be on chemo for such a long time. My Oncologist never mentioned anything about this pump to me. (Not sure she was even aware of its existence). It wasn't until my Dr. group hired this new Dr. that I was told about the pump and what it could do for me. I have had a long conversation with someone who had the pump installed 15 years ago. His tumors weren't responding to regular chemo at all. But once he got the pump installed, his tumors shrank and he was able to have them cut out. He definitely credits the pump with saving his life. You can't get it done everywhere. I think my husband said that there are about 30 places in the US that do it, mostly on the east coast. Just google HAI or HAIC (Hepatic Arterial Infusion Chemo) and see what you think. I believe I've read that using the pump for chemo after you've had the tumors cut out of your liver gives you a better chance of the tumors not coming back too. (But don't quote me on that one). I hope this info helps you. I am sending all my best wishes and hopes for you to have a full recovery. If it helps, chemo has not been fun, but it hasn't been the nightmare I expected either. They give you anti-nausea meds and steroids before they give you the chemo and that helps a ton. I am sending you all my best wishes and I will pray for your recovery. If you want to chance a call, I'm happy to answer questions or just talk. I can imagine how terrifying this is for you and I truly hope and pray for a positive outcome for you. Susan Shaughnessy