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Eric taken off Ipi, what next?

Forums General Melanoma Community Eric taken off Ipi, what next?

  • Post
    Jill and Eric in Fl
    Participant

      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

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    • Replies
        jag
        Participant

          Jill, I am very sorry to hear of the confusion going on down at Moffit with yourself and Eric, It is very possible that the local physician's have no idea what the side effects of IPILIMUMAB are, and that this could be a pain secondary to ipilimumab's inflammatory response.  Holding on the final dose of IPI, is unlikely to hurt Eric, if his immune system is reacting this strongly.   The fact that his CT shows no major progression on his part bodes very well for him, and no, you are not wrong in thinking that enlarging tumors may actually indicate ipi is working.   Another indication that this might be ipi in action is how quickly he responded to steroids, some people on this board have gradually had their tumors dissappear slowly with tapering steroids.  

           

          I wish you well, and will keep you in my prayers.  

          p.s. That attending doctor sure sounds stupid.

          John

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          jag
          Participant

            Jill, I am very sorry to hear of the confusion going on down at Moffit with yourself and Eric, It is very possible that the local physician's have no idea what the side effects of IPILIMUMAB are, and that this could be a pain secondary to ipilimumab's inflammatory response.  Holding on the final dose of IPI, is unlikely to hurt Eric, if his immune system is reacting this strongly.   The fact that his CT shows no major progression on his part bodes very well for him, and no, you are not wrong in thinking that enlarging tumors may actually indicate ipi is working.   Another indication that this might be ipi in action is how quickly he responded to steroids, some people on this board have gradually had their tumors dissappear slowly with tapering steroids.  

             

            I wish you well, and will keep you in my prayers.  

            p.s. That attending doctor sure sounds stupid.

            John

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            James from Sydney
            Participant

              Hi Jill

              our son when he went onto Ippi had intense pain they ended up putting a stent in his Utera which i think runs from the bladder, it was not actually blocked but an Lymph node was pressing on it. I would ask them to have a close look at the CT to see if  there any obstructions. I feel your pain and frustration our Specialist was in the Netherlands at the time and other Docs had no idea about Ippi. Just keep pushing for answers.

              best wishes

              James

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              James from Sydney
              Participant

                Hi Jill

                our son when he went onto Ippi had intense pain they ended up putting a stent in his Utera which i think runs from the bladder, it was not actually blocked but an Lymph node was pressing on it. I would ask them to have a close look at the CT to see if  there any obstructions. I feel your pain and frustration our Specialist was in the Netherlands at the time and other Docs had no idea about Ippi. Just keep pushing for answers.

                best wishes

                James

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                molly
                Participant

                  Jill, my heart and prayers go out to both of you that  they can keep the pain level at a minimum til Dr. Weber gets back in town and then he will have some good answers for you.

                  molly

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                  molly
                  Participant

                    Jill, my heart and prayers go out to both of you that  they can keep the pain level at a minimum til Dr. Weber gets back in town and then he will have some good answers for you.

                    molly

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                    Nancy
                    Participant

                      Hi Jill, Buddy had to miss dose #3 of IPI – he had fallen, and the scans showed swelling in the brain.  He is on steroids and doing fantastic – I think the steroid reduces the swelling, so therefore, he can move about with more strength and stability.  He is on 4mg of steroids every 6 hours around the clock-but has to reduce to low dose and stay stable before the next IPI appointment.

                      Hang in there,

                      Nancy

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                      Nancy
                      Participant

                        Hi Jill, Buddy had to miss dose #3 of IPI – he had fallen, and the scans showed swelling in the brain.  He is on steroids and doing fantastic – I think the steroid reduces the swelling, so therefore, he can move about with more strength and stability.  He is on 4mg of steroids every 6 hours around the clock-but has to reduce to low dose and stay stable before the next IPI appointment.

                        Hang in there,

                        Nancy

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                        Kevin from Atlanta
                        Participant

                          Jill,

                          This way beyond my level.

                          This may help with the lodging expenses.

                           

                          http://www.moffitt.org/site.aspx?spid=C4394FB1CF2643528CAD144254AD3505&ForwardFrom=8C68A64C8A0D43CD90539C96FF17B713

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                          Kevin from Atlanta
                          Participant

                            Jill,

                            This way beyond my level.

                            This may help with the lodging expenses.

                             

                            http://www.moffitt.org/site.aspx?spid=C4394FB1CF2643528CAD144254AD3505&ForwardFrom=8C68A64C8A0D43CD90539C96FF17B713

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                            Knutes Pam
                            Participant

                              Ippi can cause intestinal pain, bloating , gas and even perferations of the intestinal tract, steriods do helpand according to the study are recommended..  Knute had the reference for the study, but since the stroke I can't ask him to help me find it. 

                              Praying for answers and peace in this trying time for you both..

                              Knutes Pam

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                              Knutes Pam
                              Participant

                                Ippi can cause intestinal pain, bloating , gas and even perferations of the intestinal tract, steriods do helpand according to the study are recommended..  Knute had the reference for the study, but since the stroke I can't ask him to help me find it. 

                                Praying for answers and peace in this trying time for you both..

                                Knutes Pam

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                                Jill and Eric in Fl
                                Participant

                                  Eric came home today, Dr Weber said that since the liver tumors showed an increase of size he was going to stop the IPI and attack it with chemo to try to get something to work. I forget the chemo name but it was 2 or3 and one was like carbo something, I am too tired to look it all up  now. I asked if this progression could just  be the IPI causing the tumors to swell before they shrink and he said yes but since there was no way to now if it is IPI or disease progression he didn't want to waste time waiting to see which it was he wanted to attack. He said if we do nothing that Eric would most likely not be here in 4 months with this type of progression so he wants to attack hard and fast, he said we will do 3 rounds of this chemo and then get scans and if we are stable or shrinking we will look into Braf/MEK but he said that trial wouldn't open for 4 weeks and he wants to hit it before then, He scared us but at least he wants to attack and not just wait and see. He said Eric had all the classic side effects to IPI and may be showing a response but only time will tell. The good news is the pain is finally under control, we are going to try to wean off the steroids and hopefully the pain won't come back. Eric feels like they actually have the pain meds dosed a little high and they said we can wean off that too a little but we are going to get on  either no steroids or a lower dose before we start messing with reducing the pain meds. Eric is in shock, feels ok, just kinda knocks the wind out of your sails. He says give him a few days and he will be back in the fight. He says he thinks he focused too much on what IPI could do and not enough on what God can do so we will take a few days, relax, refocus and then focus more on God and get back in attack mode.

                                   

                                  Thank you for all your support, I read this website everyday and would be so lost without it, thank you for all the insight

                                  Jill

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                                  Jill and Eric in Fl
                                  Participant

                                    Eric came home today, Dr Weber said that since the liver tumors showed an increase of size he was going to stop the IPI and attack it with chemo to try to get something to work. I forget the chemo name but it was 2 or3 and one was like carbo something, I am too tired to look it all up  now. I asked if this progression could just  be the IPI causing the tumors to swell before they shrink and he said yes but since there was no way to now if it is IPI or disease progression he didn't want to waste time waiting to see which it was he wanted to attack. He said if we do nothing that Eric would most likely not be here in 4 months with this type of progression so he wants to attack hard and fast, he said we will do 3 rounds of this chemo and then get scans and if we are stable or shrinking we will look into Braf/MEK but he said that trial wouldn't open for 4 weeks and he wants to hit it before then, He scared us but at least he wants to attack and not just wait and see. He said Eric had all the classic side effects to IPI and may be showing a response but only time will tell. The good news is the pain is finally under control, we are going to try to wean off the steroids and hopefully the pain won't come back. Eric feels like they actually have the pain meds dosed a little high and they said we can wean off that too a little but we are going to get on  either no steroids or a lower dose before we start messing with reducing the pain meds. Eric is in shock, feels ok, just kinda knocks the wind out of your sails. He says give him a few days and he will be back in the fight. He says he thinks he focused too much on what IPI could do and not enough on what God can do so we will take a few days, relax, refocus and then focus more on God and get back in attack mode.

                                     

                                    Thank you for all your support, I read this website everyday and would be so lost without it, thank you for all the insight

                                    Jill

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