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Looking for the stage 4's

worriedson714's picture
Posts: 284
Joined: Dec 2019

                    So just got the news that the pet scan showed my dad is stage 4 sucks to even be typing that . It showed spread to his butt muscles and his admonial lining . So my family is once again crushed I just wanted to ask all you stage 4's . Is there different chemo's for stage 4's then stage 3's ? Do you have any tips to helping him stay healthy as he continues to fight ? What chemo's seemed to work the best for your stage 4 ? Should he get a naturopatic doctor ? This is new terroitory for us as I am sure it's different then 3 . Onc wants to wait to a biopsy to discuss this stuff but I need some info now . Need to feel like I am doing something thanks guys .  

abita's picture
Posts: 1022
Joined: Dec 2017

I began as stage 4, ao don't know about the differences in chemo for that. As far as "protocols", throwing that word in so if the oncologist uses it you know he means the treatment plan, I believe they are more of a First line, Second line, etc kind of thing. WIth folfox or folfieri being first line. I started on folfox, had folfir, and now am on irinitecan and erbutix. 

All that being said, my stage 4 mets were originally liver, then liver and lung, now lung mets only. I believe your father's locations will mke it very different from mine.

As for being healthy, I am a vegan, and I belive that is why I seem to be handling the chemo better than others. BUT, definitely not scientific or medically informed on that one.

My treatment center has nutritionist and integrative medicine. You should look into that.

I wish I could be more helpful, but I think met locations are so different that my info is too different to help. Maybe edit title to say the location to catch the attention of those who have had mets there too. I can say, it is very important to have an oncologist that vibes with you and that you feel you can trust. And understand that some are so invested in the behind the exam appts coming up with your best treatment plan, that they may seem brusque. And that can be okay, because that really is the most important thing, a doctor who is doing best to help you. I find that these types usually have very good support staff who listen and help and talk to oncologist about your concerns if they don't know the answer, so don't feel like pawned off as it were. But, if you always feel like being treated badly, get a second opinion or try to find new oncologist.

Also, when it comes time to side effects, mention even the smallest one. I let a mouth sore go until I couldn't even open my mouth enough to sip coffee so I called the doctor and spoke to his nurse. She immediately sent a steroid mouthwash prescription in, and called me after to see if was better, and said, always let us know. We have  a lot of treatments to help, and your quality of life in even the small things is so important during treatment. And yes, it was excruciating, but not being able to drink coffee was the straw that made me call :) 


Annabelle41415's picture
Posts: 6711
Joined: Feb 2009

Sorry to hear that and hoping that you can get some answers.  I'm not able to help you, but if you haven't gotten a second opinion, it might be a good time to think about it.  lt is difficult to know what will work for one, but not another.  Not everyone responds the same to the same kind of treatment.  There are different drugs out there, but that would need to be discussed with the doctor.  Wishing your father the best, and hoping that others will chime in with their thoughts.


Real Tar Heel
Posts: 214
Joined: Nov 2019

I was stage 1 for about two weeks before being diagnosed IV. I don't believe there would be a different chemo for other stages. I was on FOLFOX and we thought it was working well until it wasn't. I lucked out and was eligible for surgery, and the doctors have agreed no chemo for now. Try to stay busy until you all have a chance to speak with your team. There's a process at my hospital, I don't know whether it's the same for others; they have a cancer board that will take input from the oncs and surgical oncs and try to come to a consensus before presenting your father with options. You will need to wait on them, and wait on the biopsy.

As far as staying healthy, it will depend on his condition. At first, I was able to continue my exercise routine until a month or so into treatment. I probably could have gone longer if I had monitored other problems that made me feel worse. He can just try to do as much as he can in terms of exercise. He will need to modify his diet to help deal with the symptoms.

I had a friend who had her CRC spread to the abdominal lining. She had to go on radiation.

Ask about having molecular testing. They will look for mutations that may mean he is eligible for immunotherapy (which will be given along with chemo).

While there are similarities among many of us here, every person is different. It will depend on the diagnosis.

You're doing great!

worriedson714's picture
Posts: 284
Joined: Dec 2019

Anyone know if they do genetic testing during a pathology report ? Cause I don't see it on my dad's  


Also has anyone ever gotten a pet scan and it doesn't show the suv uptake for hypermetobolic activity ? Somone told me thats suppose to be on there 

SnapDragon2's picture
Posts: 537
Joined: Nov 2019

Get the full genetic report.  It's about 4-5 pages long and seperate.  Also, get a second read of scan outside of hospital your dad is being treated at.  Then compare findings.

Posts: 4
Joined: Nov 2020

My limited experience tells me that it all depends on what the doctor orders. If you are looking for the biomarkers and Microsatellite instability just ask the doctor if that was requested in the pathology, and if not, what other tests/procedures are needed to look for those items. If there is any loss of expression on the MLH1, PMS2, MSH2, or MSH6 antibodies they likely will suggest further genetic testing to confirm Lynch.

Something generic noted on my path report was "Small biopsy specimens may yield false negative results and repeat testing on the cancer resection specimen should be performed on initially negative cases if clinical suspicion for Lynch Syndrome/HNPCC remains."

So, I interpret that as an possible reason of why my doctors didn't request immunochemsitry on the initial biopsy and waited for the tumor resection to request these tests as it would be more accurate at that point.

I don't have any insight into the PET as I haven't had one of those yet.

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