Stage 3b 2 positive lymph nodes one year later metastatic to liver

Posted by grandmakat5 @grandmakat5, May 21 11:49am

I had surgery to remove 1 large tumor 6.4 cm with 2 positive lympnoids. Went through oral chemo Capaecitabian and one round Oxaliplatin. My scan were all clear until 80 days ago after ct and then petscan now upper right lobe of liver shoes multiple small tumors and 2 small areas on lung rt less than 2mm Having liver biopsy next week. My Oncologist is putting me back on Capaecitabian 4 times daily then at least 4 iv rounds of iv chemo They consider this now stage 4 metastasized. Has anyone else experienced this?

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grandmakat5 | @grandmakat5 | May 21 11:50am

anyone else placed on this regimen

frouke | @frouke | May 22 1:53pm

In reply to @grandmakat5 "anyone else placed on this regimen" + (show)

@grandmakat5, I was reading your message and wanted to say hello to you and hopefully others here. I’m very sorry for the difficult health conditions you’re coping with, I don’t have a lot to offer in terms of your questions but I’m here with you as a cancer survivor. I know that you have many things to think about and you will find your answers from fellow survivors, I wish you a speedy recovery and I will pray for you to be strong and safe, amen.

happygrandpa | @happygrandpa | May 27 11:00am

I too had a diagnosed metastasis to the liver. The most important step to take right now is to see a liver surgeon to evaluate for resection to remove the tumors, which is the most hopeful pathway to cure. If the tumors are not operable at this time, then the goal of chemo is to perhaps shrink or eradicate the tumors enough to make them operable.

Also important to discuss is an HAIP pump which is implanted to provide chemo directly to the liver. This approach is much more effective than systemic chemo and much less damaging to the rest of your body. Sorry you are going through this. Wishing you well and hope this helps.

Rich

grandmakat5 | @grandmakat5 | May 27 1:01pm

In reply to @happygrandpa "I too had a diagnosed metastasis to the liver. The most important step to take right..." + (show)

Im having the biopsy this Thursday and thank you so much for your response I feel like im going through this alone right now My husband and adult kids are fantastic supporters but internally im falling apart

happygrandpa | @happygrandpa | May 27 10:10pm

In reply to @grandmakat5 "Im having the biopsy this Thursday and thank you so much for your response I feel..." + (show)

I totally understand. My wife and kids have been great too, but the feeling of being alone is very real and, on some level, true. If you are on Facebook, I encourage you to find the Colontown communities. There is one general one for colorectal cancer, but then there are several other more specific groups, including one for liver metastases that was incredibly helpful for me. The support of others is wonderful and they also have Doc Talks where leading doctors share explanations and latest approaches for various conditions. That's where I first learned about the HAIP pump.

On another note, I see that our user names have some similarity! I have been NED for over a year now and have recovered fully from the multiple surgeries, chemo and radiation. I am so glad to be able to pick up each of my five grandkids, play on the floor and be the goofy grandpa I am meant to be again after a bit of a rough time. Hang in there. The stats for recovery from liver metastases have improved dramatically in the last few years. I wish you peace of mind and a clear path to follow soon after you meet with your doctors this week. Be sure to see a liver surgeon next as soon as possible. The medical oncologists are great, but they don't specialize in the surgery part, which is the most important part for treating the liver.

kathyv66 | @kathyv66 | May 28 9:25am

I was diagnosed 3c in Sept 2020. I did 6 months of chemo after surgery Capaecitabian and Oxaliplatin (8 rounds). So far so good!

grandmakat5 | @grandmakat5 | May 28 12:14pm

In reply to @happygrandpa "I totally understand. My wife and kids have been great too, but the feeling of being..." + (show)

thank you so much! and yup looks like were proud grandparents of 5! Im going to look at FB and thank you for the advice of a liver surgeon! My original oncolgist surgeon who did my colon cancer surgery had also suggested ablation so im also going to look into that. I really appreciate your support and information! Enjoy those grandbabies they bring so much joy into our lifes! and lets best this cancer together! so glad their coming up with new treatments and we live in the time of more promising outlooks for us all! Kathy

cvestor | @cvestor | May 29 8:28am

Stop doing a surgeon as all they know is cut. I did as was being forced into a permanent colostomy I did Mayo clinic instead and am now cancer free.No surgery Contact Cleveland Clinic of course in Cleveland Ohio as they have developed a new treatment using sound waves to kill tumors on the liver It may work for you & it may not nothing to lose except the time and insistent of talking to somebody about this new procedure. WOuld sure beat a surgery

sbelyea | @sbelyea | May 29 9:09am

In reply to @happygrandpa "I too had a diagnosed metastasis to the liver. The most important step to take right..." + (show)

Agree with Rich on this one.
My wife was diagnosed with Stage 4 colon cancer with several metastatic tumors on her liver. Colon surgeon removed a large ruptured colon tumor but liver tumors were too big to operate.
Six rounds of IV chemo later she is scheduled for curitive liver surgery next month.

Liver surgeon wanted general chemo for four-six rounds to take care of any other stray tumors and suggested the Hepatic Arterial Infusion Pump “if” the general chemo didn’t shrink the tumors enough but general chemo appears to have done the job.

I would add the importance of a second opinion from a trusted expert surgeon. Our local Oncologist advised her to go home and get her affairs in order and we are glad we didn’t heed this advice.