Hi Everybody,
Well, we went to see GI today to obtain results from Liv's MRE (done yesterday). MRE is showing progression of CD and mild stricture at her resection site...her last MRE was done 9 months ago, and GI feels this one looks like disease is rearing it's ugly head again. Bloodwork was all normal-no sign of inflammation, but her fecal calprotectin level from last week more than doubled, going from 317 three months ago to 966 today. Even though Liv was unable to retain the contrast for her MRE (vomited entire ingested amount right before they laid her on the table), apparently radiologist was able to get some decent pictures, enough to know that things are getting worse. Now what? Our new GI has been patient with letting us trial LDN, but feels it is time to make a decision about changing her treatment regimen. Liv feels and looks great, which makes this so much more difficult...I hate this so much. I just feel sick to my stomach; we are in the same boat we were in a year ago, after Liv was diagnosed with thyroid cancer. The issue is that all of the GI's are nervous about restarting biologics..we have had many opinions. And now our current GI wants us to get more opinions...really? He feels methorexate will not hold her as her disease tends to be somewhat aggressive. He is thinking it is best to restart biologics, but which one? Humira again, or maybe retry Remicade with IV steroids before the infusion to prevent a reaction. On Monday I will call to get other opinions from 2 adult GI's in the area. In the meantime, GI is increasing her steroid dose, AGAIN...it is now 1 year that she has been on Entocort! I attempted to wean Liv off a few months back..she lasted 3 weeks than began bleeding again. So many things are going through my mind right now...I am terrified to restart biologics again because of the cancer, but I am more terrified of letting this inflammation fester. Liv is in her senior year of high school, she has so much to look forward to, applying to colleges, senior trip, senior prom, graduation ect...I do not want her getting sick again!!! I just dropped her off at her part-time job after her MD appointment, I held back my tears until now....these decisions are so heartbreaking...I know all of you know what I'm feeling....sorry for the long narrative. Thank you for letting me vent, you guys are the best. Kim
Well, we went to see GI today to obtain results from Liv's MRE (done yesterday). MRE is showing progression of CD and mild stricture at her resection site...her last MRE was done 9 months ago, and GI feels this one looks like disease is rearing it's ugly head again. Bloodwork was all normal-no sign of inflammation, but her fecal calprotectin level from last week more than doubled, going from 317 three months ago to 966 today. Even though Liv was unable to retain the contrast for her MRE (vomited entire ingested amount right before they laid her on the table), apparently radiologist was able to get some decent pictures, enough to know that things are getting worse. Now what? Our new GI has been patient with letting us trial LDN, but feels it is time to make a decision about changing her treatment regimen. Liv feels and looks great, which makes this so much more difficult...I hate this so much. I just feel sick to my stomach; we are in the same boat we were in a year ago, after Liv was diagnosed with thyroid cancer. The issue is that all of the GI's are nervous about restarting biologics..we have had many opinions. And now our current GI wants us to get more opinions...really? He feels methorexate will not hold her as her disease tends to be somewhat aggressive. He is thinking it is best to restart biologics, but which one? Humira again, or maybe retry Remicade with IV steroids before the infusion to prevent a reaction. On Monday I will call to get other opinions from 2 adult GI's in the area. In the meantime, GI is increasing her steroid dose, AGAIN...it is now 1 year that she has been on Entocort! I attempted to wean Liv off a few months back..she lasted 3 weeks than began bleeding again. So many things are going through my mind right now...I am terrified to restart biologics again because of the cancer, but I am more terrified of letting this inflammation fester. Liv is in her senior year of high school, she has so much to look forward to, applying to colleges, senior trip, senior prom, graduation ect...I do not want her getting sick again!!! I just dropped her off at her part-time job after her MD appointment, I held back my tears until now....these decisions are so heartbreaking...I know all of you know what I'm feeling....sorry for the long narrative. Thank you for letting me vent, you guys are the best. Kim
Sending lots of hugs your way :ghug: :ghug:
