after onc was telling me i was looking good for months he later said latest petscan indicated more cancer in my abdomen....since it moved from armpit to abdomen it was then Stage 4 and as i like to say there ain't no stage 5. lots of back and forth with onc and suregoen on next move and which in the middle of my onc up and left the hospital without any warning. Much distrust abounded. Surgeon said no way to tell if enlarged LN's and mass were cancerous without investigative laproscopy. The lab report even suggested the mass and LN could be induced by immo drugs.......so off we go to surgery......... in the 4th week of recovery from colon resection surgeon's PA finally definitively says i am NED.

the point of this dissertation: these guys are by no means god, I got the feeling they didn't know much in my case and were shooting from the hip...or the bureaucracy flumoxed them. when the onc calls in the surgeon your whole case is kinda handed off . my onc had little to next to no communication with surgeon.

so my advise:

BE YOUR OWN ADVOCATE .

Sorry brother for your struggles. Thank you for your frank appraisal. It's better to know moving forward what may be ahead.

Stage 3c. I had axial LN's removal........i was warned about lymphdema , alot , from surgeon. After axail LN surgery i went on strait opvido for a year......after last infusion it was another year and half when axial LNs blew up so big u could feel it.....i noticed swelling but i thought it could be weight gain. Alas it was a recurrence. So another surgery. They screwed that up in that they took a petscan AFTER surgery and saw some tiny LN that they didn't get. Now they are trapped behind scar tissue.....this was followed by IPI 4x plus opvido......the IPI is a beast and ruined my pituitary gland along with minor symptoms like itching all over.The pituitary gland is an important organ I came to find out and about. U will learn alot of anatomy in ur course of treatment.....after the ipi another year and a half of opvido.

recent petscan relvealed inflamed LN next to my colon. colonoscopy revealed a mass but biopsy showed no cancer. none the less that leads me to a colon resection (cut out a chunk to remove the mass) and snip the LN's for biopsy. According to the biopsy from a colonoscopy the mass in my colon isn't cancerous can be attributed to a PD-1 inhibitor, which is ur opvido. i didn't have any symptons from that mass and i didn't have any effects from the second round of opvido for the last 1-1/2 years.

Just to be clear i had 1 round of opvido for a year...no sideffects and another round for 1-1/2 years without sideffects...but again i did devleop colon issues and enlarged LN's nearby which have yet to be determined as cancerous. They were actually considering if i have a secondary colon cancer but biopsy says no to that.

To answer ur question i didn't develop lymphdema BUT portions of my left arm were numb from nerve damage from operation. That improved over a year but i still have numbness and sometimes its acute.