I have reservations about this drug (regorafenib) and going to get a second opinion and look for trials. I sincerely think my dr is too conservative...
The threads I have been reading are very interesting: my first line of treatment was Folfox started 10 months after I was diagnosed in July/2018 with a Malignant Neoplasm 3 cm, Adenocarcinoma, Stage 2 T2N0... Surgeon stated with Stage 1 and Stage 2 no chemo or radiation surveillance recommended and CE A normal: surgery was (laparoscopic resection) no chemo for 10 mos. as stated above, but I had antibiotics for fissures and abscesses.
Was in pain with them for over a yr. was on opioids and patches; took a donut if I went anywhere and at home. Finally pain lessened and got off of opiods, want to say in February 2020.
In March 2019, had a CT:
Found 2 lung nodules measuring mm: possible recurrence in the lungs. April 2019, Hyper Dense leision 1.8 x 1.8 cm: local recurrence in pelvic area, along sciatic nerve. (I often wonder if dr would have suggested chemo if cancer would have Matastisized to pelvis and lungs)
May 25, 2019 FINALLY TOLD TO FIND ONCOLOGIST.
primary doctor recommended Oncologist (wonder why surgeon didn’t recommend chemo at this time, now it is Metatasti. Cleveland Clinic this time diagnosed as Stage 4. Now had an Oncologist and a couple folfox/Oxaliplatin treatments.
Stopped Folfox July 8, 2019 <Started Radiation for 5 treatments 7-22/7-29 every other day.> radiation killed the super deep tumor and knock on wood no side effects as of 1/6/2021
August 12, 2019 resumed Line-1 chemo routine. Experienced allergic reaction <aborted Folfox regime>also developed ulcerated toe went to podiatrist several weeks, toe getting worse referred to Cleveland Clinic Wound Dept. Note: not sure if didn’t get upset and it was a nervous reaction that caused me to be sick
chemo. With the toe I should have moisturized.
My Oncologist conservative won’t go back to First Line Treatment.
2nd line of treatment Irinotecan, FU5 had 12 infusions and 3 CT, First CT some shrunk very little; 2nd scan some nodules grew a little sounds like all are centimeters now no longer millimeters 3rd scan nodules grew and have satellite of new ones; Dec 14, 2020 taken of irinotecan,
Told going on Regorafenib <last resort drug not prescribed, but very little; I suggested run tissue test as pathology report stated
Only 2 tests were taken that is one in four patients; This drug history for 25% of patients have some success. It is written it gives a few Moore weeks of life if you can tolerate it. If not you are taken off
What was MSI Status on tumor
Was was KRAS Mutation
What was BRAF Mutation
I have reservations about this drug and going to get a second opinion and look for trials. I sincerely think my dr is too conservative.
I have Neuropathy from Diabetes but it’s livable I would not stop treatment over it. I have had it for 10 years. When it acts up I put my feet in cold water and after rub them with Vicks
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