I'm once again at the crossroads and uncertain which way to go. Hopefully some of you have experience or suggestions!
My continuous low platelet counts caused me to sporadically get Folfox this past late winter into spring. With all the breaks, my CEA started climbing and is now 145. Scans show growth in lung mets and two new liver mets. In early August I started Stivarga and had to stop at day 11 due to extreme foot syndrome and rash. I contacted NIH but without the required platelet count of 100,000 (mine are continuously at 40s or low 50s), I don't qualify for any trials.
My hematologist wants a bone marrow bioposy (scheduled this week) to rule out issues there with platelet count, and we're fighting insurance which denied immune globulin infusions to boost count. So now I'm scheduled for splenectomy in beginning of September, but I'm not certain that's the right decision. With that big of surgery, I won't be getting any chemo until October (my last treatment of Folfox was May 23, then one week of Stivarga at only two pills a day).
Anyone been where I am right now? Should I try to ablate (if possible, have not had consult yet on that) liver tumors and do chemo with low platelets? My oncologist will give me if they don't drop any lower, and if we can get insurance to approve infusions to boost them, it's still a temporary fix. Or get splenectomy, which is major surgery and could fix platelet problem but no one knows for certain. I'm so confused!
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)