Liver cancer that has migrated

[Valentina_22]

Hello everyone

I had liver cancer in 2018 and unfortunately have been told yesterday I have lung cancer and will be needing chemotherapy however they said I will need a stronger chemo because they are treating it as liver cancer that has migrated to my lungs. I wanted to ask if anyone else has had a stronger round of chemo and what that is. How long do they normally have it for. I am so upset by the news I was really hoping that it would be so rare for me to get it again but unfortunately that’s not the case. I suffer from very strong chest pain and back and shoulder and neck pain and feel breathless. But the chest pain is the worse does anyone else have these side effects and how do they treat it?

[Curly_Girl Caregiver]

I imagine you must be reeling from this news; I remember how I felt when we were told that my husband's liver cancer had metastasized to his lungs, and I was not the patient. I am so sorry.

I'm not sure where you're located, but I can tell you how my husband's metastasized liver cancer was treated here in southwest Michigan.

Dave still had small tumors in his liver when the small nodules in his lungs were discovered. They were not big, and he had no symptoms; we would not have known he had this if it weren't for the followup chest CT. (As I understand it, the lungs are a fairly common place for liver cancer to spread and so they monitored this.)

At the time, he was not on any chemo; he'd had a Y-90 treatment on his liver about 6 months prior and that was it.

They put him on a systemic chemo pill called Nexavar, which he took daily. This worked fairly well for about 9 months and then when he had progression, they switched him to a different chemo pill called Stivarga. That was three weeks on, one week off, and worked quite well. It shrunk the lung nodules and liver tumors, with less side effects. He was on Stivarga from August 2019 through April 2021.

He had more progression in April so they did targeted radiation on the lung nodules, which pretty well eradicated them.

That's about all the experience I can offer; at the time he got the lung radiation he also got a second Y-90 on his liver which caused a rare radiation-induced hepatitis that he did not recover from.

I don't know if they use immunotherapy to target metastases, but I know a few people here can offer experience with that. (Dave was not eligible for it because of a previous bone marrow transplant.)

I wish you well as you start your new treatment - there are some very good new treatments out there!

Wendy

[Valentina_22 Patient in reply to Curly_Girl]

Hello aww thank you so much for your kind message and hearing that your husband had the same thing and the treatments he received is very helpful. Im 31 and live in the uk, and although finding out quite recently that it’s now moved to my lungs I was told over the phone and not really given a chance to ask any questions or given any contact info or appointment follow up to find out in more detail. I have spoken to my gp today and they said that was bad practice for my hospital to do that but it’s not only horrible news to receive but over the phone in a quick phone call was not the best. So I’m just waiting… the endless waiting is the worst, as I don’t know when treatment will start, and all I have been told is that I will receive strong chemo because they are treating it as liver cancer. In 2018 when I had liver cancer I had a big operation and that was it no chemo or anything. I would like to know if I have any other options but at the moment I’m just waiting for someone to contact me.

[Iggy08713287 Patient in reply to Valentina_22]

Hi there, when you said the waiting is the worst I totally agree. I have been through 6 or 7 tumor boards. My surgery was May of last year and i have had no treatment at all because ebrtyime I was set up for some my MRI changed. I had an attempted W-90 last Thursday. It failed due to my arteries being so curvy they couldn’t get it done. Now I wait on another tumor board and I am losing track about why.

What I can say is advocate for yourself. Ask all the questions. I have been using my patient portal faithfully. I am sure I am a pain in the butt but it’s my life not theirs. You have every right to know what is happening and why. If you can message your Dr on your patient portal due so. I am on three patient portals. Oncologist, Surgeon, and interventional radiology. You must speak up or find someone to help you. You can also ask a hospital SW or friend to Take notes on your phone consult. Yes they talk fast and are not compassionate.

The other way I use the portal or phone is to write down questions and then either message them or call and ask for a team member of your DR. And leave a message with the nurse or PA with all your questioned.

Hope this helps a little.

[Valentina_22 Patient in reply to Iggy08713287]

Hello Unfortunately I have heard nothing from my hospital or doctors. I have no appointments made, I have emailed the hospital and phone up numerous times and have spoken to 111 and my gp which both said this is very unusual my gp has even wrote them a letter but still haven’t heard anything. I desperately would like to know what is going on as I am in pain and very upset but also would desperately like to be transferred to another hospital as I have completely lost faith at my hospital and trust with the way everything has been handled. I just don’t know what to do. I am thinking to call the gp up and ask them to refer me to a hospital that I no is good but I don’t know if that would be enough

[Bellbottombloos Patient]

God bless you. I pray you heal in Jesus' name.

[Valentina_22 Patient in reply to Bellbottombloos]

🙏 thank you x