Just diagnosed: Surgery not an option, looking for hope

Hey, all -- wanted to post an update. I stopped maintenance treatment the end of February this year. It started to become unbearable for me. I was smelling things at the clinic (I want to say saline solution but it could have been something else they were flushing the port with) that made me violently ill to the point where I started wearing a mask with a cotton ball under my nose that had some kind of essential oil on it so I wouldn't smell whatever it was that was causing me to vomit. I started getting anxiety two or three days before the treatment day, and I just got to the point where I said enough is enough with the infusions and the 46 hour ball. So, since the cancer remained stable, I told my oncologist that I wanted to just get a repeat CT scan in June and see where things were then. Lo and behold, the rectal tumor was too small to be seen on CT, the liver spots were unchanged, but the lung spots had increased in number and size. So, we decided to start Avastin infusion with Xeloda for four 3 week cycles which I started on July 8th. I haven't yet had side effects that I'm aware of but did have some fairly significant pain and redness on the soles of my feet after 3 days of Xeloda. I also sprayed an herbicide on my lawn around that same time wearing sandals, so it may have gotten on my feet and caused the pain and redness. Anyway, I bought Udderly Smooth cream with 20% urea as well as Voltaren ointment in anticipation of hand foot syndrome. I have put on either the cream or the ointment under socks twice a day since Saturday, and now it's Tuesday and my feet are so much better I can actually walk without pain now.

I will continue the Mvasi/Xeloda for a total of 4 cycles and get a repeat CT scan to see if there are any changes in the lung spots. After that we'll see where things are, but I anticipate taking a four week break from Xeloda and restart it if needed.

Hope everyone is doing alright. Would love to hear how things are going for all of you.

@zchristine72 YES !!

I have said a prayer for you. Do not forget you always have the option to get a second opinion. I have recently had digestive, heart, thyroid, and orthopedic issues all in the matter of 3 months .

I had researched myself into the grave and started feeling sorry for myself although I was praying at the same time!

I decided to begin advocating for myself because my doctors, although seemingly nice enough, just did not give me the options or care that I was looking for. So I started doing my own research and finding specialists based off of their reviews and ratings and ended up with the best in my area.

This is YOUR life! No one gets to tell you how to live it. Do not take that prognosis as a death sentence, take it as motivation and a will to live!
Pray without ceasing and advocate for yourself!

YOU CAN DO THIS!

Dr. Peter Sulak had stage 4 brain cancer. He took some extreme measures. I don't know how it would work. He sounds very sincere to help others. Be careful, lot's of information just want your money.

Recuerde que el unico que da la vida es Dios y el es el unico que la quita tambien.
He escuchado varias historias y varios casos sobre esto y se han recuperado no pierda la fe y vera como se arreglan las cosas, yo tuve cáncer de colón etapa 2 , gracias a el hoy estoy libre, asi que tenga fe y le deseo suerte en su recuperación.

@mjohnston, thinking of you today. How are you doing between work, your son helping out, and your husband's chemo?

I would suggest that the Drs test you dna , turned out my husband is allergic to all chemo , sadly at the VA they thought he was just whining when he was reporting symptoms/ side effects.
He was diagnosed 12/2021 and is still here

Fight it as long and hard as YOU want. Don't be afraid to keep pain under control. Hospice is wonderful as needed. They will keep pain away and are very supportive to patient and family. I saw this firsthand as I took care of cancer patients for 15 years at the John B Amos Cancer Center. New Treatments come on the horizon so don't give up. I also was diagnosed with colon cancer in June 2025. I don't let that worry me or steal my todays. Prayers for You.

@mustang08 …and we know that cancer can be such a good teacher, bringing us back to our core values as we treasure each hard-earned day.

Husband diagnosis and prognosis nearly identical. Quality #1. After the first several cycles we settled in to living with cancer. Ups. Downs. Dosage reduction. No surgery. Nearly 4 years later playing golf and pickleball once a week. Snowbirds. We’ve relooked at what’s important and adjusted our lifestyle. Super grateful for caring oncology teams in two states. It’s so darn overwhelming at times. Just deal with today. Don’t look back. Don’t look too far forward. Best wishes!!