Surgery or no?

[beach sunrise]

Great point, Siti! Team Rachel would be a good idea probably. I wouldn't have had such a smooth/ less life stress recovery without the people around me willing to help out (mainly the never ending laundry and grocery shopping

[rachelfromnyc]

There are many team Rachel supporters I've been getting lots of help up to this point. My favorite is getting help with changing sheets as changing the duvet is one of my least favorite chores. My parents retired last year and are in Florida and won't be here until Thanksgiving. However my brother lives in the city and I have many friends who will check in on me throughout the recovery.

Last Friday, I completed the presurgical testing. It consisted of an EKG, labs, speaking with the anesthesia NP, etc. In addition the regular labs, they measured clotting factors and some other things but long story short, I'm cleared for surgery. My CEA dropped two points also. Since April, my CEA has been rising. It's leveled off in the last three months but still high and this is the first time it's been lower by more than one point. Oncologist says it should drop after surgery. Even though my scans have been stable, I can't help but wonder if they're just missing something. Last thing I need to do is see the stoma nurse which I will do tomorrow to get marked but otherwise, I just have to wait for surgery day and take care of myself until then.

If this is of any encouragement at all, my husband’s lymph nodes were noticeably smaller post surgery. He did a CT scan 5 weeks after his surgery and right before chemo.

This is definitely encouraging! I have enlarged nodes that have been stable so I just figured they've reached the limit of how much they can shrink. I wonder why, if he didn't have chemo between the surgery and the post surgery scan, the nodes shrank? Regardless, hope I'll have the same result.

[Siti]

Happy to read your positive post, Rachel. You’re so lucky to get help with the sheets! I’ve watched so many YouTube videos on how to get it right but I always end up fighting with the duvet regardless. LOL!

And to your question — yes, his oncologist personally compared the scan together with the radiologist and it was noted in his report as smaller but still present. We chose not to see the report until my husband finished 2 cycles because either way, the outcome would mean chemo so we preferred to not know until his next scan

Keep us posted on your recovery

[rachelfromnyc]

Good news/bad news update. So the good is I had my surgery and the primary tumor was removed. There were too many lymph nodes involved and surgeon thought it was too risky to go for them all based on location so he only took out those that were accessible and may give me issues in the future. I recovered well and by week 3, I felt on the up and up. The bad news is that I had a follow up scan last week and it it's back in the liver. And a mix of stable/progression in the lungs and lymph nodes. Liver is the biggest concern. Oncologist said they're small (about 1 cm), but still. We talked three options: 1) continue with Folifiri which was keeping me stable up to surgery, I had 2 stable scans going into surgery, 2) Folfoxiri, the kitchen sink as she described, or 3) start looking at clinical trials. I would've had to wait a week or two or more for info on the trials and I had a huge sense of urgency to get back on something so we agreed on Folfoxiri. I disconnected yesterday. It was by far the worst in terms of fatigue. I was in bed all weekend, I couldn't even sit up. Additionally, I'm having intense lower back pain which may or may not be related. The plan is to do 5-6 infusions and have a scan in Jan/Feb. I'm obviously disappointed and scared. What do you guys think? Did the doc and I miss anything?

[Lee]

I am so sorry regarding your liver spread. Not sure where you are at, butt if you can get to Sloan Kittering Memorial hospital in NYC. They have had a lot of success with a HAI pump in getting rid of liver tumors. They have also worked with patients that had both liver & lung mets.

I would also check out getting the tumors checked for mutations. Maybe there is something out there besides chemo for addressing the tumors, immune therapies, Ketruda, etc.

Good luck,

Lee

[Siti]

I’m so sorry to hear the news about your liver spread. Did they do a biopsy on the primary tumour? Apparently with a bigger specimen they’re able to find as Lee said other mutations if any. I think you’re on the right track in terms of going ahead with a few infusions of the strongest chemo and perhaps look for trials in tandem?

[rachelfromnyc]

Thanks everyone for your responses and encouragement. I've heard about the Joe Tippens protocol and will put it on the list to research more in depth. In the meantime, I'm already at Sloan Kettering but I'm finding I learn more from this board and its members. For example, I had to ask for my surgical pathology report. After it was released, I had to make another appointment for someone to explain it to me (next week). I also had my first infusion of folfoxiri on last Friday. Rough. I didn't have any nausea or vomitting or anything but the fatigue was extreme. I couldn't even sit up, I was asleep in bed all weekend. After disconnecting, I took a quick shower and had to lay down for a couple of hours just from the exertion. Unreal.

[beach sunrise]

Hi Rachel, it is so good to have you update us.
Fatigue stinks but you got this!!!! You are one strong determined lady for sure!!!