Need advice on stage 4 mother

[ko1300cc]

My mother was diagnosed in April 2012 with stage 4 with mets to her ovaries and 2 mets to her liver. She had a hysterectomy to remove the cancer completely, a 15 inch bowel resection to remove the cancerous tumor and 2 successful liver resections with one positive margin on the liver with microscopic evidence on April 23, 2012. She had then completed 12 sessions of Folfox (10 with avastin and 8 with folfox). Her scans were clear on the following check-up. On december of 2012 she started to have severe abdominal pains and was admitted to the ER, turned out to be some adhesions that needed to be corrected. The surgery was done same day and things started to look up, although there was no promise that the adhesions wouldn't occur again. She wasn't due for scans until March 8, 2013. She went in yesterday and her oncologist told her that the cancer has spread throughout her abdominal cavities (small lesions as the onc stated), there is fluid build up throughout her abdomen and parts of her lungs. He recommended Folfiri with avastin next week for three months to track the progression and if it helps to continue the regimen. If it doesn't help he recommends no chemo at all. This seems to be very limited in options. We are scheduling an appointment with Sloan Kettering for next week to see what are other options are. Could someone please offer some advice on how to treat this? Has anyone else been through similar journeys? Please any help will be appreciated here.

[KarMel]

I am so sorry to hear about your mother and the difficult time she has had.
Although we can not give medical advice here, I do think your plan of taking her to SloanKettering is a good one.

Getting a second opinion is always a good choice. If your mom's disease is progressing that quick as it seems, also be open to the ideas of hospice and palliative care. The most I,portant vote in this decision, of course, belongs to Mom, assuming she has her mental abilities. You didn't say her age.

Others may chime in with suggestions. Hope this helps

[ko1300cc]

Hello, thank you for your response. She is 45 years old and was diagnosed at 44. So she is still young and has plenty of fight left in her. Folfiri is recommended as a second line therapy to see if that curbs progression. Going to Sloan Kettering to get a second opinion, perhaps HIPEC.

[ko1300cc]

I noticed that you are currently on Folfiri. How have you been responding to this? How are the side effects? Sorry I might be coming on too strong, but I'm just trying to get as much information as possible here.

[novascotia]

Sorry your mother is going through this. Getting a second opinion is a great idea as HIPEC may be an option for her.
Hopefully you will get a better plan with her appointment next week.
Carm

[KarMel]

I noticed that you are currently on Folfiri. How have you been responding to this? How are the side effects? Sorry I might be coming on too strong, but I'm just trying to get as much information as possible here.

Going to update signature... I am off all chemo treatments... I have been thru every treatment out there, it seems, and at this point, I have no options I want to pursue, such as an experimental trial. Long story, and I realize you are new here, so I don't want to discourage you and your mom, but it's where I am at.

Folfiri did not work for me, except in combo with a new drug called Zaltrap. Zaltrap had some nasty side effects and I couldn't stay on it.

Folfiri alone... Nausea, fatigue and diarrhea. We're those side effects manageable? For the most part, yes. What has happened is I have a large amount of fluid on my belly from the tumors in liver.it has progressively worsened and the liver tumors keep growing, in spite of all chemo I have been. Which is why I am stopping treatments.

Please feel free to ask any question...you are not coming on strong, I admire you for being a strong advocate for your mom.

[hannahw]

You're definitely doing the right thing by getting a second opinion. It will give you a better sense of whether there are other options and, if so, whether those are options you Mom is willing to pursue. When you're stage IV, there does come a point where the treatment is worse than the disease and every patient has to decide this for themselves.

One thing that I would suggest, and it's difficult to hear, is start talking to your Mom about what she wants at end of life. It's not to say she's near that point, but research shows it's much better for people to talk about their wishes sooner rather than later. As disease progresses and people are under greater duress it because more and more difficult to talk about openly and honestly. Talking about it doesn't mean anyone is giving up, it just means you're putting a plan in place that reflects your Mom's values so that, when the time comes, you know what she wants and you can honor her wishes. Research also shows that one of the most difficult things family members experience is the conflict and grief that comes from not knowing the wishes of their loved ones. There are certain decisions you probably would not want to make for your Mom. Having these conversations, as difficult as they may be, will ultimately be a blessing for your entire family. Even if your Mom were to live another 40 years, end of life care will eventually be an issue. Talking about it, updating preferences as beliefs may change, these are all things that will bring peace of mind.

When my Dad was first diagnosed he was too sick to share his preferences. We spent the first night in a complete panic because we had no idea what to do. Then, after he survived surgery, we spent several weeks waiting to be able to talk to him because he had to have a trach. His condition was still touch and go and we still didn't really know what he wanted. Once we started talking, it was a tremendous relief to everyone, not only to talk about what he wanted, but for all of us to share what we would want individually in the event we were facing end of life. Everyone wants something different so it's important to let everyone choose what's right for them.

You might find this website helpful: http://theconversationproject.org/

Like I said, you may not be anywhere near end of life, but it's really never to early to start talking. As a result of my Dad being sick, we got plans in place for our whole family. You never know when you might need it.

[ams5796]

I also am a strong believer in the power of second and even third opinions. I do recall that Sloan Kettering does not do HIPEC surgeries. You may want to check on that if your plan is to ultimately explore that option.


Ann

[ko1300cc]

I appreciate all of the feedback guys. I'm fully aware of the prognosis and I came to terms with that when she was first diagnosed. Her initial diagnosis was the hardest for me. It just seemed like a storm of emotions at a rapid pace and it was hard to handle at such a delicate time of my life. I guess I in a sense conditioned myself to expect the worst and pray for the best. The toughest part is dealing with my mothers denial and times when she is in severe pain. I hide my emotions from her as well so that doesn't rub off on her and bring her down. Getting a second opinion this week can hopefully open up different avenues of positive thinking for the whole family.

HIPEC hasn't been discussed at all by her current onc, he just simply wants her on FOLFIRI with avastin and track the progress from there with "chemo for life" mindset, since according to him there is no chance of cure. Suppose the second opinion suggests the same course of treatment. Where does she go from there? A third opinion? Also how can I deal with my own emotions as far as guilt? I know my mom wants me to still live my life, travel the world and start a family, but the guilt is so overwhelming when I go live my life and try to have fun, knowing my moms is slowly deteriorating away.