The Colon Club

I hear you Riki on the giving up part. It bothers me too, but i learned 2 things through this experience. One is I have a lot of anger, well more than usual. So much so that I started therapy, odd since I was never a big believer but it has at least helped me sort out my feelings. Apparently losing control and facing death will make one angry

Second is that our path is lonely and entirely our own. Sure, we lost some friends after being diagnosed. Maybe they weren't good friends, maybe they don't know how to deal. Some of us have excellent caregivers, some less so, some are abandoned by their friends and family. In the end, we will walk this path lonely because it is a lonely experience.

I try not to give into the anger and project my own on others. I am disappointed to hear that pfccr does not want SOC, i hear him when he says chemo was invented in 1957, that's true. I think it would be awful to give up. But those feelings are my own and not his burden. pfccr has had his own journey and is emotionally in a place where that's his perspective.

I encourage him to follow any path that can bring better health. I am happy every time there's a new possibility of treatment. I imagine his doctors hear him and understand his reluctance to go back to chemo. Some oncologists will try other things if the patient has decided on a path. Also not every clinical trial is for last line, some are specifically designed for early and second line crc. This is goodness, we saw that with the dostarlimab MSI first line trial. All MSI patients were NED without chemo/rad/surgery.

For my part, i was "educated" early on chemo. I was complaining to a stage 4 CRC friend and she told me I should have more respect. Thousands of people dedicated their lives to refining and countering side effects. It worked really well for me. But I will not ignore the collateral damage it does. I hope some day (soon) we will not have to go through chemo, but given where we are, i will take it. And whatever else my oncologist thinks will help me.

MadMed wrote:I hear you Riki on the giving up part. It bothers me too, but i learned 2 things through this experience. One is I have a lot of anger, well more than usual. So much so that I started therapy, odd since I was never a big believer but it has at least helped me sort out my feelings. Apparently losing control and facing death will make one angry

Second is that our path is lonely and entirely our own. Sure, we lost some friends after being diagnosed. Maybe they weren't good friends, maybe they don't know how to deal. Some of us have excellent caregivers, some less so, some are abandoned by their friends and family. In the end, we will walk this path lonely because it is a lonely experience.

I try not to give into the anger and project my own on others. I am disappointed to hear that pfccr does not want SOC, i hear him when he says chemo was invented in 1957, that's true. I think it would be awful to give up. But those feelings are my own and not his burden. pfccr has had his own journey and is emotionally in a place where that's his perspective.

I encourage him to follow any path that can bring better health. I am happy every time there's a new possibility of treatment. I imagine his doctors hear him and understand his reluctance to go back to chemo. Some oncologists will try other things if the patient has decided on a path. Also not every clinical trial is for last line, some are specifically designed for early and second line crc. This is goodness, we saw that with the dostarlimab MSI first line trial. All MSI patients were NED without chemo/rad/surgery.

For my part, i was "educated" early on chemo. I was complaining to a stage 4 CRC friend and she told me I should have more respect. Thousands of people dedicated their lives to refining and countering side effects. It worked really well for me. But I will not ignore the collateral damage it does. I hope some day (soon) we will not have to go through chemo, but given where we are, i will take it. And whatever else my oncologist thinks will help me.

Thanks MadMed - I agree so much with what you say. I made so much mistakes in the beginning and also know the path of feeling lonely. No matter how hard loved ones try to help they know they will never relate to what your going through. I just trying to make sure mistakes are not made here, I feel like opportunities can be missed and helping PFccr is my ultimate goal. Chemo sucks I am on it 2 weeks right now to try and beat my cea/cancer back down. I don't want to highjack PFCCR thread too much, I support him, just got to be careful with the suicidal comments without exhausting important options. I know chemo is old, unfortunately there is way more stats on chemo/soc then natural, I wish natural curative intents approach would have more stats. It's like hidden. PFCCR has contributed so much with this thread in regards to his treatment, it gives hope, but pull back on I rather die then do SOC, or get an ileostomy, be considerate of others that have done that approach like we are with his approach, that is all

Thanks Riki, I am inspired by your fortitude and will draw on it when I have to get back on treatment. You're right that we're here to help and support one another. We know deeply what each other are going through. pfccr has contributed a ton and continues to do so. We are rooting for you pfccr, it would be wonderful if you get NED from the current path, we would love it and would benefit from it.
Hang in there, it's dark sometimes but the fight is worth it.

Wow I haven’t been on the forum for a while and it looks like I missed a lot, especially with regards to pfccr’s treatment - I thought he was about to start some very promising things?? Do I understand right that they won’t be available unless he agrees to some chemo?
This is such a personal decision, one cannot judge one way or another. Personally I’m really, really happy that DH agreed to SoC; chemo was anything but fun and left him with painful neuropathy, but it also treated his lung mets, shrank his adrenal met, etc.

Pfccr if you still visit the forum, know that I absolutely respect your ultimate decision, but I still think you should do whatever it takes (including chemo) if it gives you the opportunity to try a novel, powerful, promising treatment, especially one with curative intent. But again, it is your life, your choice. Thinking of you XXXXX