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Re: what happens after chemo?

Posted: Thu Jul 12, 2018 1:43 pm
by Caat55
NHMike wrote:
Caat55 wrote:Our local hospital is a different system but I have access to my records, can download and send them to Stanford but the visiting doctor's note are not detailed. I will try anyway and hope it is enough. In the mean time I will try to schedule the enema, things tend to book out months in advance out here. I have time, want all the chemo or most anyway out of my system. According to what I read, both oxal and xeloda can slow down healing.
S


I definitely believe that. My neuropathy remains after a month after finishing. I'd say that it hasn't been declining. The tingling is worst in the toes and there's some in the fingers.


Ditto, I have to wear slippers in house, shoes outside all the time. My mouth and throat are super sensitive too, feel like tin.

S

Re: what happens after chemo?

Posted: Mon Aug 06, 2018 6:23 pm
by Caat55
Cea is .5. Going to get scan is 6 weeks. Pays to push a little.
Susan

Re: what happens after chemo?

Posted: Mon Aug 06, 2018 6:30 pm
by NHMike
Caat55 wrote:Cea is .5. Going to get scan is 6 weeks. Pays to push a little.
Susan


Sounds good.

Re: what happens after chemo?

Posted: Mon Sep 17, 2018 7:29 pm
by Caat55
CT CAP 9/11/2018 NED

Re: what happens after chemo?

Posted: Tue Sep 18, 2018 7:40 am
by susie0915
Awesome news!

Re: what happens after chemo?

Posted: Tue Sep 18, 2018 7:06 pm
by NHMike
Caat55 wrote:CT CAP 9/11/2018 NED


Welcome to the club. Be sure to stay.

Re: what happens after chemo?

Posted: Tue Sep 18, 2018 9:46 pm
by Caat55
I think this Nedville place is the coolest, planning on hanging here and never moving again.
Susan

Re: what happens after chemo?

Posted: Thu Sep 20, 2018 5:06 pm
by boxhill
Last week I asked my oncologist what we'll do when I finish the 12 cycles of FOLFOX.

Right now he's trying to get me through the last few cycles without any more delays. Neulasta has fixed my WBC /neutrophil problem nicely, but platelets continue to be a problem. They were 58 on the scheduled day for infusion #9, so I took an extra week. Up to 126 yesterday, so went ahead with #9. Assuming my normal drop per cycle, I should be able to get through #10 without another week off. He had already reduced my Oxy dose by 20%, this time he shaved 20% off the 5FU, and is hoping that it will help with platelet recovery.

At the moment I am in the unusual position of being Stage !V NED, so I am generally not eligible for trials. Not that I'm complaining, mind you!

So when I finish FOLFOX, hopefully at the end of October, I'll have more scans, likely including a PET scan, which I've never had, and quite possibly a liver MRI, which I've also not had. We really want to get these done in this calendar year, before the insurance deductible ticks over. If I continue to be officially NED, after that there will be periodic scans. We haven't discussed what will happen if something shows up. Since I am MSI-H, Keytruda is a possibility, but I have no idea whether it would be possible to go straight to that or whether something else would be indicated.

Re: what happens after chemo?

Posted: Sun Sep 23, 2018 11:26 pm
by retiredteacher
Congrats Susan! I have been off awhile and just now catching up! My doc sent me away until the end of September so will press for a scan etc. at that time. Just got back from Alaskan cruise with no issues - even managed to hike around on the Juneau ice field with nary a bathroom for miles. Foot neuropathy still there, but is not keeping me awake at night - fingers crossed my luck holds! Glad you got a good report card!

Terri

Re: what happens after chemo?

Posted: Mon Sep 24, 2018 6:30 pm
by Caat55
boxhill wrote:Last week I asked my oncologist what we'll do when I finish the 12 cycles of FOLFOX.

Right now he's trying to get me through the last few cycles without any more delays. Neulasta has fixed my WBC /neutrophil problem nicely, but platelets continue to be a problem. They were 58 on the scheduled day for infusion #9, so I took an extra week. Up to 126 yesterday, so went ahead with #9. Assuming my normal drop per cycle, I should be able to get through #10 without another week off. He had already reduced my Oxy dose by 20%, this time he shaved 20% off the 5FU, and is hoping that it will help with platelet recovery.

At the moment I am in the unusual position of being Stage !V NED, so I am generally not eligible for trials. Not that I'm complaining, mind you!

So when I finish FOLFOX, hopefully at the end of October, I'll have more scans, likely including a PET scan, which I've never had, and quite possibly a liver MRI, which I've also not had. We really want to get these done in this calendar year, before the insurance deductible ticks over. If I continue to be officially NED, after that there will be periodic scans. We haven't discussed what will happen if something shows up. Since I am MSI-H, Keytruda is a possibility, but I have no idea whether it would be possible to go straight to that or whether something else would be indicated.


It is a lot to take in isn't it? The PET scan is a longer test, shows activity in color. Hopeful my CT gave enough detail. Next step barium enema I believe in prep for reversal.

Re: what happens after chemo?

Posted: Mon Sep 24, 2018 6:32 pm
by Caat55
retiredteacher wrote:Congrats Susan! I have been off awhile and just now catching up! My doc sent me away until the end of September so will press for a scan etc. at that time. Just got back from Alaskan cruise with no issues - even managed to hike around on the Juneau ice field with nary a bathroom for miles. Foot neuropathy still there, but is not keeping me awake at night - fingers crossed my luck holds! Glad you got a good report card!

Terri

Vacations are the best. Glad you got time to enjoy yourself. Tingles aren't keeping me down, but I do notice I get tired more at end of day. The clear CT was a great anniversary gift. Looking forward to next stage.
Susan

Re: what happens after chemo?

Posted: Tue Sep 25, 2018 2:22 am
by AppleTree
I am on a scan schedule. But I also see a nutritionist every month. I am 5'8 and down to 103 this week, grrr.I also see an oncologist councillor. Plus my hospital has free strength training, group therapy. It is 2x a week and I am pretty sure it is 2 months. So, I do not feel like I have been dropped like a hot potato. Plus, my port gets flushed every month and I get my Sandostatin shot. Next PET is mid October. Oncologist wants me to keep the port for a year (sigh).

Re: what happens after chemo?

Posted: Thu Sep 27, 2018 10:39 pm
by Caat55
I don't know how long I keep the port, maybe until the reversal and they remove it at the same time. I have a recheck every 6 weeks, flush, at least it isn't sore. I haven't been told about other scans for now.

S