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Good results with a bad reaction

Forums General Melanoma Community Good results with a bad reaction

  • Post
    Eileensulliv
    Participant

      On Thursday, I went in for a CT scan (with contrast) and my usual nivo treatment. Before getting nivo, they give me some Benadryl because I broke out in hives once while getting my nivo. When I had a CT scan a couple of months ago, I started vomiting towards the end of my nivo treatment, and was really out of it for at least a day, so they started giving me half the dose of Benadryl during my treatments, and I have been just fine during every treatment since then.

      This past Thursday I had the scan and the treatment, complete with Benadryl. During the treatment I started feeling cold and tired, which is not entirely unusual. I finished the treatment and they removed the IV. I went to the bathroom and started shaking from the cold. I went to gather my things and leave, when one of the nurses stopped me because I was shaking so badly. She looked at my eyes and immediately sat me back down, saying I was having a reaction. Getting another IV in for more Benadryl was a challenge because of the shaking, but they got it in and my reaction seemed to calm down. And then I started vomiting and fever spiked. Tylenol was no help for the fever, and eventually I was admitted to Hopkins, where I stayed until Sunday.

      They checked all sorts of things, as I also developed shortness of breath while in the hospital and had to be on oxygen. The shortness of breath still comes about, but does get better everyday. They treated me with prednisone, and I have started to taper the dosage. I'm hoping this won't delay my treatments as it did for me back in March. My onc and I will talk later this week about how to proceed. At this point, it's safe to say something about the CT contrast isn't sitting well with me. But is it the contrast alone or when it's with the nivo… We don't know. 

      Have any of you experienced this? I'm just curious as to what my future scan options will be. My onc says he thinks we could try a CT without contrast, but that there are other options.

      Im sorry to make a long post even longer, but the BEST part is the CT scan results…. GREAT NEWS!!! The tumors in my lungs and most lymph nodes are GONE! The mesenteric lymph node in my bowel is stable, no change… However, it is just barely larger than a normal lymph node, and may just stay the size it is now because it was so enlarged earlier this year. My onc seems to think if he were to look at it under a microscope, he wouldn't find any cancer. He says we will continue on the nivo and scan again in another couple of months, but that so far "everything looks great"! Even in the hospital when I was, of course, wanting clarification (in utter disbelief that the tumors in my lungs and other lymph nodes are just GONE) he said he would call this a POSSIBLE partial remission! I think he was trying to be very cautiously optimistic with me, but I just kept pressing and pressing! 

      I just read the CT scan report this morning and kept looking for the second page… It was so short! Here's to good scans, short reports, and a celebration without a hospital stay! Thank you all so much, I love the support I continue to receive through this board!

    Viewing 20 reply threads
    • Replies
        liberty04281
        Participant
          It is a great news. Congratulations!
          liberty04281
          Participant
            It is a great news. Congratulations!
            liberty04281
            Participant
              It is a great news. Congratulations!
              _Paul_
              Participant

                Woohoo Eileen!!! That is awesome! In the true sense of the word!

                As for your reaction, have you ever had a CT without the nivo? That way you could hopefully narrow down if you are reacting to the contrast or to the nivo.

                Keep up the good work!

                – Paul

                  Eileensulliv
                  Participant

                    Thank you, Paul! I have had CTs without Nivo before, plenty in the past. But thinking back to my first dose of ipi and nivo, I was feeling a bit crummy after a few days, and they called me in and did a ct scan approximately 5 days after treatment. That's when I started getting really sick with vomiting and fevers and shakes, landing me in Hopkins for a week. I'm wondering if they can possibly use a different contrast.

                    Eileensulliv
                    Participant

                      Thank you, Paul! I have had CTs without Nivo before, plenty in the past. But thinking back to my first dose of ipi and nivo, I was feeling a bit crummy after a few days, and they called me in and did a ct scan approximately 5 days after treatment. That's when I started getting really sick with vomiting and fevers and shakes, landing me in Hopkins for a week. I'm wondering if they can possibly use a different contrast.

                      Eileensulliv
                      Participant

                        Thank you, Paul! I have had CTs without Nivo before, plenty in the past. But thinking back to my first dose of ipi and nivo, I was feeling a bit crummy after a few days, and they called me in and did a ct scan approximately 5 days after treatment. That's when I started getting really sick with vomiting and fevers and shakes, landing me in Hopkins for a week. I'm wondering if they can possibly use a different contrast.

                      _Paul_
                      Participant

                        Woohoo Eileen!!! That is awesome! In the true sense of the word!

                        As for your reaction, have you ever had a CT without the nivo? That way you could hopefully narrow down if you are reacting to the contrast or to the nivo.

                        Keep up the good work!

                        – Paul

                        _Paul_
                        Participant

                          Woohoo Eileen!!! That is awesome! In the true sense of the word!

                          As for your reaction, have you ever had a CT without the nivo? That way you could hopefully narrow down if you are reacting to the contrast or to the nivo.

                          Keep up the good work!

                          – Paul

                          AshleyS
                          Participant

                            Even though I'm not happy about your reaction I'm so happy for your results! Yah trial buddy!!!! I've never had a reaction like that. Be sure to post again to let us know any updates. 

                            Ashley

                              Eileensulliv
                              Participant

                                Thank you, Ashley! I've been keeping up with your adventures via caringbridge! If you ever make it out East, please let me know!

                                Eileensulliv
                                Participant

                                  Thank you, Ashley! I've been keeping up with your adventures via caringbridge! If you ever make it out East, please let me know!

                                  AshleyS
                                  Participant

                                    I will!!!! 

                                    AshleyS
                                    Participant

                                      I will!!!! 

                                      AshleyS
                                      Participant

                                        I will!!!! 

                                        Eileensulliv
                                        Participant

                                          Thank you, Ashley! I've been keeping up with your adventures via caringbridge! If you ever make it out East, please let me know!

                                        AshleyS
                                        Participant

                                          Even though I'm not happy about your reaction I'm so happy for your results! Yah trial buddy!!!! I've never had a reaction like that. Be sure to post again to let us know any updates. 

                                          Ashley

                                          AshleyS
                                          Participant

                                            Even though I'm not happy about your reaction I'm so happy for your results! Yah trial buddy!!!! I've never had a reaction like that. Be sure to post again to let us know any updates. 

                                            Ashley

                                            arthurjedi007
                                            Participant

                                              Sounds like since you get the half dose Benadryl with your nivo you've been fine. But when you do that and have a ct with contrast there are problems. They could try the ct a day apart to see if it's the combo. Also they have other types of contrast they use. Standard that they put in the iv is some type of iodine they said. Not sure about the drink but they have different types of it as well. Otherwise yes contrast can cause odd reactions. Last Thursday I had a head MRI which I've had a few before and I almost drowned in my own fluids. I'm like what the heck. Could have been because I had ct contrast a few hours before they didn't know. But I'm to never have magnavist contrast again. Fortunately I just got my head MRI report and I'm happy. No new stuff. The one that is pressing on my brain only grew at most by .2 cm so just a tiny amount.

                                              Artie

                                                Eileensulliv
                                                Participant

                                                  Artie, you are always in my thoughts and prayers! What funny is, when I was hospitalized this past weekend, I was thinking you must be going to NIH soon, and what a shame we couldn't meet for a cup of coffee or something! 

                                                  I call my doc tomorrow to talk about next steps, definitely about further scan options. In the meantime, I just had a shave biopsy done of a new suspicious spot on my leg. Hoping for good results! 

                                                  Eileensulliv
                                                  Participant

                                                    Artie, you are always in my thoughts and prayers! What funny is, when I was hospitalized this past weekend, I was thinking you must be going to NIH soon, and what a shame we couldn't meet for a cup of coffee or something! 

                                                    I call my doc tomorrow to talk about next steps, definitely about further scan options. In the meantime, I just had a shave biopsy done of a new suspicious spot on my leg. Hoping for good results! 

                                                    Eileensulliv
                                                    Participant

                                                      Artie, you are always in my thoughts and prayers! What funny is, when I was hospitalized this past weekend, I was thinking you must be going to NIH soon, and what a shame we couldn't meet for a cup of coffee or something! 

                                                      I call my doc tomorrow to talk about next steps, definitely about further scan options. In the meantime, I just had a shave biopsy done of a new suspicious spot on my leg. Hoping for good results! 

                                                    arthurjedi007
                                                    Participant

                                                      Sounds like since you get the half dose Benadryl with your nivo you've been fine. But when you do that and have a ct with contrast there are problems. They could try the ct a day apart to see if it's the combo. Also they have other types of contrast they use. Standard that they put in the iv is some type of iodine they said. Not sure about the drink but they have different types of it as well. Otherwise yes contrast can cause odd reactions. Last Thursday I had a head MRI which I've had a few before and I almost drowned in my own fluids. I'm like what the heck. Could have been because I had ct contrast a few hours before they didn't know. But I'm to never have magnavist contrast again. Fortunately I just got my head MRI report and I'm happy. No new stuff. The one that is pressing on my brain only grew at most by .2 cm so just a tiny amount.

                                                      Artie

                                                      arthurjedi007
                                                      Participant

                                                        Sounds like since you get the half dose Benadryl with your nivo you've been fine. But when you do that and have a ct with contrast there are problems. They could try the ct a day apart to see if it's the combo. Also they have other types of contrast they use. Standard that they put in the iv is some type of iodine they said. Not sure about the drink but they have different types of it as well. Otherwise yes contrast can cause odd reactions. Last Thursday I had a head MRI which I've had a few before and I almost drowned in my own fluids. I'm like what the heck. Could have been because I had ct contrast a few hours before they didn't know. But I'm to never have magnavist contrast again. Fortunately I just got my head MRI report and I'm happy. No new stuff. The one that is pressing on my brain only grew at most by .2 cm so just a tiny amount.

                                                        Artie

                                                        Jubes
                                                        Participant

                                                          Hi Eileen 

                                                          congratulations!! Sorry about your reaction. How much prednisone were you on for how long and what did you taper to? 

                                                          Tks 

                                                          anne-Louise 

                                                            Eileensulliv
                                                            Participant

                                                              Thank you, Anne-Louise! They started me on some sort of steroid while I was having the reaction, and then 60mg of prednisone the next day (Friday). I started 50mg yesterday, and will do 40mg Friday. Just taper down 10mg every three days. 

                                                              Eileensulliv
                                                              Participant

                                                                Thank you, Anne-Louise! They started me on some sort of steroid while I was having the reaction, and then 60mg of prednisone the next day (Friday). I started 50mg yesterday, and will do 40mg Friday. Just taper down 10mg every three days. 

                                                                Eileensulliv
                                                                Participant

                                                                  Thank you, Anne-Louise! They started me on some sort of steroid while I was having the reaction, and then 60mg of prednisone the next day (Friday). I started 50mg yesterday, and will do 40mg Friday. Just taper down 10mg every three days. 

                                                                Jubes
                                                                Participant

                                                                  Hi Eileen 

                                                                  congratulations!! Sorry about your reaction. How much prednisone were you on for how long and what did you taper to? 

                                                                  Tks 

                                                                  anne-Louise 

                                                                  Jubes
                                                                  Participant

                                                                    Hi Eileen 

                                                                    congratulations!! Sorry about your reaction. How much prednisone were you on for how long and what did you taper to? 

                                                                    Tks 

                                                                    anne-Louise 

                                                                    Millykamp
                                                                    Participant

                                                                      Great news.. Sorry about the bad reaction.. And kudos to the nurse that stopped you, and got you in the medical attention you needed.., 

                                                                      Millykamp
                                                                      Participant

                                                                        Great news.. Sorry about the bad reaction.. And kudos to the nurse that stopped you, and got you in the medical attention you needed.., 

                                                                        Millykamp
                                                                        Participant

                                                                          Great news.. Sorry about the bad reaction.. And kudos to the nurse that stopped you, and got you in the medical attention you needed.., 

                                                                          DZnDef
                                                                          Participant

                                                                            Congratulations on those scan results, Eileen!  Fantastic news!  Sorry you had such a rough time of it.  Hopefully that won't happen again and all those mets stay GONE!

                                                                            DZnDef
                                                                            Participant

                                                                              Congratulations on those scan results, Eileen!  Fantastic news!  Sorry you had such a rough time of it.  Hopefully that won't happen again and all those mets stay GONE!

                                                                              DZnDef
                                                                              Participant

                                                                                Congratulations on those scan results, Eileen!  Fantastic news!  Sorry you had such a rough time of it.  Hopefully that won't happen again and all those mets stay GONE!

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