Stage IV multiple metastatic sites

[L0729]

Visiting this page and seeing some long time contributors no longer with us is gut wrenching. These people helped me so much sharing their experience and wisdom. now feeling very down. Are there any stage IV survivors here that have survived more than a few years with multi organ/distant lymph node spread?

[Green Tea]

... Are there any stage IV survivors here that have survived more than a few years with multi organ/distant lymph node spread?

L0729-
You can look at the signatures of the members listed in the post below to see which ones, if any, had multi-organ/distant lymph node spread.

Stage IV: NED for how long? (2021 roll call)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65587&p=509066#p509066

[roadrunner]

It appears from your signature that you still may have oligometastatic disease. I will link a summary article below. If this is the case, you may benefit from seeking out physicians who will treat you with curative intent, or at least with the goal of longer-term survival. The previous surgery in your liver may complicate that, but it’s worth looking into. It is also worth keeping in mind that extensions of life may serve as the bridge to newer, better therapies. Focus on others’ courses of disease and results IMO is not usually very productive, at least to the exclusion of individual strategic thinking and hope, as each of us is unique and the therapeutic landscape is constantly changing. I hope this is helpful, and I wish you the best.

https://www.cancer.gov/news-events/canc ... metastases

[stu]

Oh that’s such a shame and understandable . My mum has just died but not before she squeeze in 15 years of living as a stage 4 patient .
Right through her seventies she only had one operation . It caught up with her in her 80s but she must have found a way to hold the disease at bay all those years as she did not have treatment .
We hold others stories as a light on a difficult journey but the truth is only your response and stats dictate your outcome .
As a family we had to remind ourselves of that many times .

Gather strength and keep putting your best foot forward.
Stu

[utahgal7]

Hi,

I know everything must seem overwhelming right now. I agree with the other posts that it is not a good idea to compare yourself to others. Please understand that even with Stage IV cancer, you can live a long time. There are new treatments being developed every day. The best advice that I can give you is to distract yourself in any way possible. Some good choices would be exercise, listening to music, reading a book, mindful meditation, nature walks, play cards, spend time with family & friends, puzzles, go out to lunch/dinner, etc. Engage your mind in anything other than cancer. I know its tough and it is so easy to fall down the rabbit hole of what if's. If you would like to talk further, feel free to send me a PM.

Remember there is hope. So don't despair. I wish you luck!

Take care,

Paige

[L0729]

Stu, Roadrunner,Greentea,
Thank you for your replies and sharing. Stu I’m so sorry to hear of the passing of your mom. She sounds like an incredible lady who soldiered through a lot!!! You shared her story with me back awhile ago and I really appreciated it!!
Unfortunately I no longer am being treated with curative intent. I have not upgraded my signature after being clear a few months Recurrence in scans June/23 showed a 3cm spot in liver near original tumor and maybe a dozen sub cm lung nodules throughout all lobes. I’ve been on a trial since August 23 involving folfiri avastin and antibody drug. Liver lesion 1.3 and still shrinking, lung nodules originally all shrank but I believe they are growing again. Imaging shows two spots on spine that not confirmed but have responded to chemo so most likely cancer. It’s hard to say if they were there before trial. One was for sure Also a suspicious chest lymph node which has since returned to normal size I think the distant lymph node was the point where nothing but chemo is an option for me I feel things may be starting to grow again as cea has been slowly rising. Last one was 3.9 (2.3, 2.4, 3.2, 3.3, and now 3.9). I am going through some colitis but as you’ve all said look at the trend.
I thought they could do some alternative things to liver lesion once off trial( I get why they can’t do surgery) such as radiation but onc said it’s not part of the standard of care I know the situation and have accepted it but seeing other people lose this battle makes me wonder why bother. With the lower resection and LARS quality of life is not great. I am trying the day by day approach and enjoying new grandchildren. I am pulling for each and every one of you guys

[L0729]

[quote="utahgal7"]Hi,

I know everything must seem overwhelming right now. I agree with the other posts that it is not a good idea to compare yourself to others. Please understand that even with Stage IV cancer, you can live a long time. There are new treatments being developed every day. The best advice that I can give you is to distract yourself in any way possible. Some good choices would be exercise, listening to music, reading a book, mindful meditation, nature walks, play cards, spend time with family & friends, puzzles, go out to lunch/dinner, etc. Engage your mind in anything other than cancer. I know its tough and it is so easy to fall down the rabbit hole of what if's. If you would like to talk further, feel free to send me a PM.

Remember there is hope. So don't despair. I wish you luck!

Take care,

Paige

Paige
Thank you for the words of encouragement. Your post did make me feel a little better and point taken about the individuality of this disease. The losses are tough though, even though never meeting any of these people I felt their battles were part mine in solidarity and just feel the loss My docs have prescribed lexapro. Not a big pill fan though and causing gi issues on top of folfiri. Thank you for sharing your story and words of encouragement. All the best
Lori

[stu]

I feel for you and I think you are only human . So these thoughts are bound to surface .
I never updated mum’s bio as I am
Still cross it came back but it did in 2022 . Her primary was removed in 2010 , I think! . She had evidence of lung mets since 2014 !
I think it’s hard if your instinct is it’s time to change treatment and you have that to consider and easy to get discouraged but I hope you can draw strength and find a way forward for you .
Thinking of you ,
Stu