So my dosing started on 10-9 and was easy peasy with no immediate problems. On 10-14, Saturday, I had some celery and peanut butter for breakfast and started feeling ill about an hour later. The rest of the day consisted of diarrhea and nausea which turned into worse towards the evening. Sunday was on and off diarrhea and still nauseated but not sick. Loss of appetite followed and things pretty much remained that way for the next 3 weeks. I was thinking food poisoning or ecoli or even a bug of some type going around, never the drugs. We were told that immodium wouldn't touch diarrhea if were related to the drugs but it was working so again, not the drugs and had lost 4 pounds the first 3 weeks. On the 30th we went down for the second dosing and nothing new with the nivo but started to get a headache or the start of one a short time into the ipi. Got home and nothing major until about 7 pm when I got a severe pain in my lower right gut which lasted until Thursday morning. Appetite is now completely gone and not eating hardly anything, nausea is horrible. I am in contact with my oncologist's staff daily looking for solutions and know i have a blood draw the following Monday and hope i can make it that long. Am checking weight daily and continually dropping, feeling weaker and realize I can't continue like this. I make it to Monday's blood draw and they had cleared a spot to see me. Doc says he still isn't convinced it's the drugs but says the only way to find out is to admit me. He's very concerned that I'm alone but I thought it was a blood draw, not this. I agreed and want this fixed, I have lost an additional 6 pounds. Admitted to the new James, 20th floor looking south but who cares, I feel like crap.
The diarrhea and dry heaves have been with me now for 8 days and I feel things are going in the wrong direction. I call Annette, poor soul, I was never wanting to be a burden on her. It was my job to take care of her, something I looked forward to and felt was my life's mission. Obviously she was scared and worried but agreed we needed an answer and that I was in the right place. They started pouring fluids in me and running blood tests as well as scheduling a plethora of others all the while my condition worsens, I've now lost 3 more pounds. CT's, mri's, scopes, you name and we checked with much trouble. Since I couldn't keep anything down, the cleanses didn't work so well so out comes the G-tube. I've never had one and I had broken my nose many, many moons ago so on the 5th try, they got it in along with the cleanse, oh what fun this is. Then, let's do an mri of the intestines with a barium contrast, here, drink 2 of these bottles in 40 minutes! Didn't get close but got enough to make the happy.
I was started on a high dose of steroid, which reverses the immunotherapy drugs on Friday so it was determined the only thing left was the drugs as the culprit. Dr. Patel was in contact with Dr. Olencki constantly so we knew i was in good hands. I started feeling better Friday evening and even ate some food. By Saturday even better and eating 3 meals with snacks in between. I was switched to pill form steroids which I'm told will be a 3-4 week ordeal. There is a biopsy scheduled for Friday which I imagine we'll keep and we'll have to discuss finishing out the trial.
I am very disappointed as I was hoping this was my answer but most folks don't understand clinical trials. They think you sign up, get in, do it, and move on. People come close to dying doing trials and I imagine some have. Research for any kind of disease puts peoples lives at risk on a daily basis but you will find time and time again people volunteering trying to cling to this beautiful life we have been blessed with. And if it doesn't work for us, we know it will help someone in the future, hopefully. I don't think there are any other trials available for me but there are drugs available as long as they are affordable, another big issue for patients of any disease. Some people do go through trials like a walk in the park, unfortunately for me, my body chemistry isn't going to allow that I'm afraid. I am not giving up yet by any means but this one did take a big piece out of me and rest is in order for a while. We'll explore options and move on from there so in the mean time, enjoy this beautiful life you have been entrusted with to do good things with and help others as well as love those close to you. We'll talk again soon, until then, ............