ginabeewell wrote:On Monday when I went in, my weight was up 4 lbs since my post-op, so all those nachos I ate (don't ask me why I was craving nachos, but I had some version of them like three times over four days) must have made a big difference. My iron levels were low, so I was craving weird things, like oysters - which I think are seriously disgusting, so it is always a sign to me that my body must really need something when they suddenly feel like a good idea.
ginabeewell wrote:I've also decided that after the treatment is done, I'm going on a honeymoon with my husband - a real one.
juliej wrote:I had the weirdest food cravings after my liver resection! It was the season for fresh Atlantic salmon in NYC and I literally ate it every day. I also craved sweet potatoes/yams, so there was definitely an orange theme going on! That was basically all I ate for about a month. Afterwards I wondered if it had to do with the high amount of omega-3 fatty acids in salmon or all the minerals in both foods. It was almost a desperate feeling.
Mohrfamily wrote:Me: You beat cancer and you can buy whatever sports car you want.
AmyG wrote:Question: what happens after your last infusion/disconnect?
AmyG wrote:Lol, I meant after chemo is finished. Are you declared NED? Wait and watch? Frequent scans? Do you still have to go see your oncologist still?
ginabeewell wrote:AmyG wrote:Lol, I meant after chemo is finished. Are you declared NED? Wait and watch? Frequent scans? Do you still have to go see your oncologist still?
Got it!
I am hoping after my next surgery in November - second liver resection - they will declare me NED. Then I would have 3-6 months of mop-up chemo. I know some institutions believe in chemo for life, but MSK is not one of them, so I am assuming that from there, they will just put me on a schedule for regular scans and maybe CEA pulls, as that has been a good marker for me and could be done locally.
All that said, I'm making giant assumptions about all of that based on what I've read for others who have gone through treatment with Dr Kemeny. She's not one to be talking about stuff too far in the future. The only thing she's confirmed for me is that I won't have to be on Vectibix forever. I guess I was happy to hear that at least!!
cartech78 wrote:
Its pretty rare to see Dr.Kemeny keep people on maintenance chemo for life when you are declared NED. Her general road map with most people seems to be systemic for 6 months after being declared NED and HAI pump treatments unless the luver enzymes start to climb. If you are NED by way of liver resection she is really conservative about giving you fudr and watches those numbers like a hawk. For me my ALK phos had been in the 330 range and she just keeps on giving me the fudr in my pump- lol, I did not have a liver resection though! I know that she generally has people with active cancer scanned every 2 months and people who just hit NED every three months! Another thing that is new is that MSK has been slowing down the rate of infusion in the pump to every 3 weeks for people who are NED and off chemo completely to ease the burden of the maintenance. Rumor has it they are testing it to try and get it to 4 week intervals for that. The general data shows that its split down the middle on Oncs who think you should be on maintenance chemo for life or not when you are NED. Im glad she falls under the category of no Chemo for life. The data is pretty cloudy if it really helps or not as there are just so many factors that go into reoccurrence rates and such. She’s aggressive as hell when she needs to be but she really seems to know when to put the brakes on as well when its needed and I love that about her. Glad to hear you doing well. Good luck with your upcoming Chemo.
ginabeewell wrote:cartech78 wrote:
Its pretty rare to see Dr.Kemeny keep people on maintenance chemo for life when you are declared NED. Her general road map with most people seems to be systemic for 6 months after being declared NED and HAI pump treatments unless the luver enzymes start to climb. If you are NED by way of liver resection she is really conservative about giving you fudr and watches those numbers like a hawk. For me my ALK phos had been in the 330 range and she just keeps on giving me the fudr in my pump- lol, I did not have a liver resection though! I know that she generally has people with active cancer scanned every 2 months and people who just hit NED every three months! Another thing that is new is that MSK has been slowing down the rate of infusion in the pump to every 3 weeks for people who are NED and off chemo completely to ease the burden of the maintenance. Rumor has it they are testing it to try and get it to 4 week intervals for that. The general data shows that its split down the middle on Oncs who think you should be on maintenance chemo for life or not when you are NED. Im glad she falls under the category of no Chemo for life. The data is pretty cloudy if it really helps or not as there are just so many factors that go into reoccurrence rates and such. She’s aggressive as hell when she needs to be but she really seems to know when to put the brakes on as well when its needed and I love that about her. Glad to hear you doing well. Good luck with your upcoming Chemo.
That’s super helpful Cartech, thank you!!
Does the HAI pump chemo extend beyond the 6 month mop up cycle? Or does that shift to saline at the 6 month mark?
A Medtronic rep told me the devices can go up to 180 days without a refill! When I mentioned this to Sandy, Dr K’s nurse, she all but shushed me out of the office. So it doesn’t surprise me to hear they are testing 3-4 week increments. It would make a big difference to have a cycle longer than 2 weeks if the pump stays in for ~5 years.
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