Jolene wrote:Hey Nifty - was just thinking about you and wondered if you started Chemo !
Congrats on the good pathology news ! What's your WW surveillance arrangement with your team like ?
My mum had a port installed herself a few years back due to colon cancer and she appreciated it. Like you, they often couldn't get a good vein out of her and she was sick of being pricked repeatedly for all sort of blood work and infusions. The fact that she was on 12 cycles of Folfox warrants it even more !
I'm wondering how do the doctors decide between FOLFOX or XELOX for ww patients ! Were you offered XELOX at all ?
My arm is no longer aching, the ache went away around day 4/5 but that was also the time when I felt the most exhausted when the steroid weans off. It's day 12 of my very first cycle and I'm starting to feel mild tingling on my palms. I guessed its coming !!!
Sorry I missed that you asked me some questions.
I am not on an official WW protocol. My doctors do not do it and in fact had me scheduled for the radical surgery etc. I advocated for myself and made sure they understood that I knew the potential risks and was still choosing to go the less invasive, organ-preserving route. Lucky for me, my surgeon and oncologist were respectful of my decision and promised to support me in my decision. They did insist before going ahead that I commit to the adjuvent chemotherapy. I had no problem doing so as I think it is a good idea, unless the side effects threaten to ruin my quality of life (ie if the peripheral neuropathy seems likely to become permanent or something like that).
The good news is that my surgeon is one of the top guys in my area for the TAMIS procedure and also seemed up to date on everything I brought to his attention. He also consulted with some colleagues out east (possibly even the people mentioned in this thread!) and after speaking to them, he let me know he was feeling even better about supporting me in my decision.
The follow up pathology and my complication-free recovery from the TAMIS surgery convinced him that not only had it been an OK risk to take, but he now believes it was the "best approach" to take in my case. I am SO GLAD I advocated for myself! And I am so glad I found this thread (thank you again prs and everyone who shared their stories in here!) because it was the first I had heard of there even being other options for me. From here, I did a ton of research and went to my surgeon armed with printed studies from top notch medical journals and universities. I am not generally an assertive person, but at this stage in my life I realised that my former passive deference to experts was not always in my best interest. I decided to take their advice into consideration and also learn as much as I could on my own, and then form an opinion on what I should do.
I am glad to hear that your mother found the port helpful. I am scheduled for 8 rounds of FOLFOX. No, I wasn't offered any other chemo regimen. I did ask about it, especially as I am very concerned about neuropathy - but the oncologist was adamant that this is the correct one for me.