Eric taken off Ipi, what next?

Hi sorry I haven't posted in awhile, Eric received 2 doses of Ipi and was itchy and running a fever 10 days after the first dose, after the second dose he was still itchy and the fever came and he had lots of aches and pains, he said his bones hurt like they did after he got the Neupogen(sp?) shot after chemo, I took all these as good signs that he was having an immune response, every time we talked with Dr Weber at Moffitt about these side effects he said it sounds like its from the medicine and not to worry about it.

Hi sorry I haven't posted in awhile, Eric received 2 doses of Ipi and was itchy and running a fever 10 days after the first dose, after the second dose he was still itchy and the fever came and he had lots of aches and pains, he said his bones hurt like they did after he got the Neupogen(sp?) shot after chemo, I took all these as good signs that he was having an immune response, every time we talked with Dr Weber at Moffitt about these side effects he said it sounds like its from the medicine and not to worry about it. Then on Aug 23rd, 12 days after his 2nd dose, he woke up in the middle of the night in extreme pain, it was so bad he couldn't move and he had a panic attack, so we called the ambulance and he went to the ER. We live over 2 hours from Moffitt so we went to our local hospital where Eric had received treatment before being transferred to Dr Weber at Moffitt. Eric was having lots of gas and bloating and only one episode of diarrhea and then he got constipated from the Imodium. His belly gurgles and rumbles so loud it would wake me up at night. Eric kept saying if he could get rid of the gas and full feeling he thought the pain would go away .The ER did a  full work up, xrays and a ct scan and could not find a reason for the pain, morphine took the pain away and after several hours they sent us home (with no pain meds). They said the lesions in his liver had gotten larger but they were comparing it a scan in May before he was transferred to Moffitt so I wasn't concerned and figured the progression occurred before starting IPI, well after a week of pain and not much relief we were back at the ER on Sun, Dr Weber suggested we start him on oxycodone so home we went again. Eric was scheduled to get his 3rd dose this past Wed. The oxycodone wasn't helping with the pain and he was still unable to move very well, Dr Weber looked at him and admitted him to the hosp. Dr Weber was headed out of town for a conference but he said at least 3 times during the visit Eric didn't need another CT scan, he said he believes it is the liver tumor hitting some nerves and causing such pain and he would have the "pain team" here at Moffitt get the pain under control and he would see him in 3 weeks for a final dose of IPI. He explained that he couldn't get the 3rd dose so he had to skip it but the 4th dose would be in 3 weeks. He said the pain was either tumor destruction (he said that 3 times), tumor progression but a ct wouldn't be able to tell the 2 apart. Anyway we were admitted Wed morning and they set up a morphine pump and Eric's pain level was still 7 or 8 on a scale of 10, the docs decided to do a ct to rule out possible causes even though I told him he just had one 9 days earlier, they ran all kinds of blood tests to find out what caused his temp to rise even though I told them it was probably from the IPI. What upset me was Eric has not eaten in days and after 24 hours in the hosp they hadn't done anything to help the pain, the morphine was no longer working. What set me off was when the intern doc came in after 24 hours and said the attending MIGHT stop in to see him tomorrow, I had to get a little ugly and ask where this pain team was and why were they not helping my husband. The intern doc said the ct didn't show anything except that his liver tumors had grown by a cm or two and the other in his spleen had gotten bigger too, they say his colon has no colitis or inflammation isn't isn't blocked in any way. They said Eric could try to eat solid food, he was so hungry at this point, I got him a yogurt and as soon as he finished his pain level went from a 5 all the way to a 10, he started sweating, got really cold and he was shaking so bad from the pain the whole bed was moving. The nurse saw all this happen yet when she asked the doc to give him more morphine he said no. Well I lost it,I got everyone I could think of involved and within 10 mins the pain team showed up. They explained that he was opium resistant and the morphine isn't working well, anyway they got his morphine level raised and he was back down to a pain level of 5 or 6 and they were going to come up with a plan. I asked the docs if the plan was to just keep him comfortable until he passes away and they were shocked I asked that, they said his bloodwork was all good his LDH  was high but not too bad. I just cant see how I will ever be able to take him home if he is on a morphine pump. Meanwhile his belly still makes these awful sounds and he says the gas makes him feel so full. Anyway to make a longer story a little shorter, the emailed Dr Weber in Belgium and sent him the ct results and Dr Weber, emailed back and said he was taking him off IPI and he would see us when he got back in town to go other other options we might have. Well the attending doc came in this morning and basically said"we are sorry you have progression of disease, Dr Weber is taking you off IPI and there is nothing more we can do" The pain team recommended steroids and they gave him his first dose and he said he felt better, he got his second dose this afternoon and when I got back in town he was sitting up in a chair he was smiling, talking, laughing, almost his old self. My gut feeling is that while the liver tumors  may be hitting a nerve he was having some sort of gastrointestinal issue that the steroids has helped clear up, I still feel like he was having a response to the IPI, he had so many side effects and his eyebrows which we light in color are much  lighter now with a few white hairs but the hair on his head hasn't changed. I just don't understand why he cant get the last dose of IPI and give it a chance to work and why if they know IPI causes tumors to get bigger before shrinking, why he would be taken off. Dr Weber says that if it is tumor destruction it can hurt and he sent us to the hosp for pain management and now we are off the trial, I am confused. Does anyone know if there is a clause in the compassionate use trial that says if they show progression during the 12 weeks that they have to be taken off? Dr Weber acted like he didn't want a ct because he was afraid the tumors would look bigger and maybe he knew that would remove him from the trial, I don't know I am just guessing. Sorry this is so long, I am in a hotel room away from my kids and I am emotionally and physically exhausted. I went home today to work (we own our own business and I can't afford to get behind)and get clothes, we were here 2 days with no extra clothes or anything, my mom stayed with Eric but we can't afford to keep staying in a hotel for too much longer so I think I will send my mom home tomorrow and sleep in the hosp with Eric, ugghhh I am tired here are my questions:

What after IPI? He has a brain met, had radiosurgery and it shows no electrical activity and is shrinking so we assume its dead but I read all these trials say no brain mets. Dr Weber has mentioned BRAF in the past but we haven't been tested for that, what other options are there?

Am I wrong in thinking that maybe just maybe the tumors appear larger on the CT is because the IPI is working and they are "progressing" before they shrink?

Is there anything that stands out to you guys that I or the docs aren't thinking of? I find it amazing that on morphine alone his pain level was still a 5 but now after 2 doses of steroids its a 1 or 2, doesn't sound just like tumor pressing on nerves to me, what else might it be? I have said all along its kinda like colic but the docs didn't buy into that

Wow sorry this is so long, Dr Weber will be back in the country on Sun but considering Mon is a holiday I probably won't see him until later in the week and in the mean time my mind is just spinning. Oh and another thing that kept making me mad was the attending doc, the head lady of the team, kept calling IPI, chemo and was trying to explain that with all chemo there are side effects and this chemo only has a 4% response rate, it just goes to show that even the docs in the same hosp don't know what is going on. Eric kept trying to correct her and explain to her that IPI is an immunotherapy but she still kept calling it chemo, come on Dr Weber get home soon so we can get some answers!!!

Thanks

Jill