DonutHead wrote:i think they tell you that keying in on the standard chemo protocol. they are not going to tell you that you are going shorter in an effort to keep you focused on the standard. they have to. that's what my infusion nurse told me today. in her 25 years, she said she has not seen many make it through all 12 cycles because they can be excruciatingly tough as the body needs a rest at time to come back for the next round.
she too said 8 appears to be the magic number. so what she suggested was to figure out 6 months of treatment and just show up when i am supposed to, do the pills as precribed at home and the onc will handhold me through. that puts me to mid april. i think i will go all 12 rounds, but if 8 is what i get then so be it.
hang in there, teacher....i feel so much better about everything having this one cycle in...just waiting for side effects now and will tell you everything as this goes along to help feed you helpful information. hang in there you are almost in the chair to full recovery,
I had first bite syndrome, but I think it kicked in around round 2/3. It seemed to lesson as treatment progressed. I know about cold sensitivity so drank everything room temp until day before next round I could stand a milkshake.
I was cut from oxi after round 7. So I did not make the full 8, but was ready to do it, even though recent studies (ASCO) suggest 6 is only 2% less effective as 12 and reduces chance of permanent neuropathy down from 85% to 15%. That was the big difference. My lymph involvement was only 1 out of 27 and it was the one closest to the tumor, only .1mm from the tumor itself as tumor spread just shy of the outer wall. >.1mm in some areas. It was also graded as low/slow growing and well to moderate differentiated.
My onc said after round 7 I'd had enough as my counts had been trashed right after treatment - mostly neutrophils. Then all the growth factor shots started morphing my red blood cells and reducing them along with platelets to dangerous levels. So onc pulled me off and now I'm doing leucovorin with 5FU only - well along with the standard anti nausea steroids. I Just received treatment 11 and still packing my pump (mona) until tomorrow.
I went in with clean scan other than the original tumor which was removed via robotic assist ULAR 5 weeks prior to Chemo.
Had a port installed in between.
I have another CT scan on 20th and hoping/praying it comes back clean.
Treatment gets progressively harder as you go along, but after stopping of OXI - 5fU and leucovorin seem a cakewalk.
I've been improving since 2 weeks after stopping OXI. Both on counts and energy.
You can do it, just make sure all symptoms are reported to ONC so they can monitor neuropathy and perhaps introduce other tests like LDH during your blood draws.
It's a delicate balance to make sure you're body isn't getting too damaged from the chemo, while keeping up with the treatments.
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!