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Temodar vs Ipi?
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Temodar vs Ipi?

› Forums › General Melanoma Community › Temodar vs Ipi?

  • Post
    • February 24, 2014 at 9:28 pm
    Michelem
    Participant

      Husband woke up this am with severe abdominal swelling. Onc says this is caused by the cancer spreading too fast for the ipi to fight. He's thinking of switching us from ipi to Temodar. Says there is no literature on using them together.

      We were in ER over the weekend, they did not properly read the labs and did a total misdiagnosis of dehydration.

      Things are looking very grim. Thoughts from anyone here? mm

    Viewing 5 reply threads
    • Replies
        • February 24, 2014 at 11:59 pm
        Maureen038
        Participant

          Michele,

                I don't have any advice on the drugs, but I wanted you to know that you and your husband are in my prayers. I'm so so sorry you are having to deal with so much. I sent you a private message. If you need to talk, let me know and I will send you my number. Hugs!

          Maureen

          • February 24, 2014 at 11:59 pm
          Maureen038
          Participant

            Michele,

                  I don't have any advice on the drugs, but I wanted you to know that you and your husband are in my prayers. I'm so so sorry you are having to deal with so much. I sent you a private message. If you need to talk, let me know and I will send you my number. Hugs!

            Maureen

            • February 24, 2014 at 11:59 pm
            Maureen038
            Participant

              Michele,

                    I don't have any advice on the drugs, but I wanted you to know that you and your husband are in my prayers. I'm so so sorry you are having to deal with so much. I sent you a private message. If you need to talk, let me know and I will send you my number. Hugs!

              Maureen

                • February 25, 2014 at 5:45 am
                Michelem
                Participant

                  Thank you, Maureen!

                  • February 25, 2014 at 5:45 am
                  Michelem
                  Participant

                    Thank you, Maureen!

                    • February 25, 2014 at 5:45 am
                    Michelem
                    Participant

                      Thank you, Maureen!

                      • February 25, 2014 at 5:51 am
                      Michelem
                      Participant

                        I read your profile, and I see we're not the only ones going through such a lot! We just missed an ipi/novilumab trial, but are now supposedly set for a novi trial that begins later in March. However, the disease is progressing so rapidly that our doc is not sure it is likely to be effective, which is why he wants to move ahead with the Temodar now.

                        In any case, everyone on this forum has a serious story to tell. I only wish we could all turn out to be strong survivors  . . . mm

                        • February 26, 2014 at 12:14 am
                        Maureen038
                        Participant

                          I hope things are getting better and I hope Temodar works great for your husband. A lot of us are in this painful journey that truly sucks, but it's wonderful getting support here. I go to a caregiver's support group too and I pray a lot!! Wishing you the best Michele!

                          Maureen

                          • February 26, 2014 at 12:14 am
                          Maureen038
                          Participant

                            I hope things are getting better and I hope Temodar works great for your husband. A lot of us are in this painful journey that truly sucks, but it's wonderful getting support here. I go to a caregiver's support group too and I pray a lot!! Wishing you the best Michele!

                            Maureen

                            • February 26, 2014 at 12:14 am
                            Maureen038
                            Participant

                              I hope things are getting better and I hope Temodar works great for your husband. A lot of us are in this painful journey that truly sucks, but it's wonderful getting support here. I go to a caregiver's support group too and I pray a lot!! Wishing you the best Michele!

                              Maureen

                              • February 25, 2014 at 5:51 am
                              Michelem
                              Participant

                                I read your profile, and I see we're not the only ones going through such a lot! We just missed an ipi/novilumab trial, but are now supposedly set for a novi trial that begins later in March. However, the disease is progressing so rapidly that our doc is not sure it is likely to be effective, which is why he wants to move ahead with the Temodar now.

                                In any case, everyone on this forum has a serious story to tell. I only wish we could all turn out to be strong survivors  . . . mm

                                • February 25, 2014 at 5:51 am
                                Michelem
                                Participant

                                  I read your profile, and I see we're not the only ones going through such a lot! We just missed an ipi/novilumab trial, but are now supposedly set for a novi trial that begins later in March. However, the disease is progressing so rapidly that our doc is not sure it is likely to be effective, which is why he wants to move ahead with the Temodar now.

                                  In any case, everyone on this forum has a serious story to tell. I only wish we could all turn out to be strong survivors  . . . mm

                                • February 25, 2014 at 11:27 am
                                ncdaniel
                                Participant

                                  My wife had one dose of ipi followed by severe colitis cured by two doses of remicade (thank God for this ) that was her experience with remicade and Yervoy. After that she was a candidate for TIL and had cells grown but the cancer developed to much for implant of TIL cells so she is now doing three chemo drugs Temodar, cisplatin and vinblastin . She had one dose in early December and developed blood clots unrelated to Temodar but since she had brain mets  they were unable to use thinners for clot. MRI was done and mets were clear allowing use of thinner and she has had two more chemo rounds since and has scans next week. I believe  though unfounded that the Temodar and other chemo drugs cleared her brain mets. Also she had a new tumor growing on her back that was rapidly increasing in size and it started to shrink after the first round of chemo. Keep up the fight

                                  Daniel

                                  • February 25, 2014 at 11:27 am
                                  ncdaniel
                                  Participant

                                    My wife had one dose of ipi followed by severe colitis cured by two doses of remicade (thank God for this ) that was her experience with remicade and Yervoy. After that she was a candidate for TIL and had cells grown but the cancer developed to much for implant of TIL cells so she is now doing three chemo drugs Temodar, cisplatin and vinblastin . She had one dose in early December and developed blood clots unrelated to Temodar but since she had brain mets  they were unable to use thinners for clot. MRI was done and mets were clear allowing use of thinner and she has had two more chemo rounds since and has scans next week. I believe  though unfounded that the Temodar and other chemo drugs cleared her brain mets. Also she had a new tumor growing on her back that was rapidly increasing in size and it started to shrink after the first round of chemo. Keep up the fight

                                    Daniel

                                    • February 25, 2014 at 11:27 am
                                    ncdaniel
                                    Participant

                                      My wife had one dose of ipi followed by severe colitis cured by two doses of remicade (thank God for this ) that was her experience with remicade and Yervoy. After that she was a candidate for TIL and had cells grown but the cancer developed to much for implant of TIL cells so she is now doing three chemo drugs Temodar, cisplatin and vinblastin . She had one dose in early December and developed blood clots unrelated to Temodar but since she had brain mets  they were unable to use thinners for clot. MRI was done and mets were clear allowing use of thinner and she has had two more chemo rounds since and has scans next week. I believe  though unfounded that the Temodar and other chemo drugs cleared her brain mets. Also she had a new tumor growing on her back that was rapidly increasing in size and it started to shrink after the first round of chemo. Keep up the fight

                                      Daniel

                                        • February 26, 2014 at 5:49 am
                                        Michelem
                                        Participant

                                          Thank you, Daniel. I don't know about implant of TIL cells? What is that?

                                          My husband is having lots of abdominal distension and inability to urinate . . . doc says the ipi is not keeping in front of the cancer so that is why he is trying temodar. We are afraid the liver is failing  . . . things seem very grim.  mm

                                          • February 26, 2014 at 5:49 am
                                          Michelem
                                          Participant

                                            Thank you, Daniel. I don't know about implant of TIL cells? What is that?

                                            My husband is having lots of abdominal distension and inability to urinate . . . doc says the ipi is not keeping in front of the cancer so that is why he is trying temodar. We are afraid the liver is failing  . . . things seem very grim.  mm

                                            • February 26, 2014 at 4:16 pm
                                            KRob
                                            Participant

                                              I did use Temodar and it was effective on the 5 mets throughout my body. My 3 brain lesions were treated with gamma knife + craniotomy so I can't say if the drug affected them or not.

                                              It sounds like it's worth a try for you husband to take it; you'll never know if you don't.

                                              Here's hoping and praying for you that it works.

                                              Karen

                                               

                                              • February 26, 2014 at 4:16 pm
                                              KRob
                                              Participant

                                                I did use Temodar and it was effective on the 5 mets throughout my body. My 3 brain lesions were treated with gamma knife + craniotomy so I can't say if the drug affected them or not.

                                                It sounds like it's worth a try for you husband to take it; you'll never know if you don't.

                                                Here's hoping and praying for you that it works.

                                                Karen

                                                 

                                                • February 26, 2014 at 4:16 pm
                                                KRob
                                                Participant

                                                  I did use Temodar and it was effective on the 5 mets throughout my body. My 3 brain lesions were treated with gamma knife + craniotomy so I can't say if the drug affected them or not.

                                                  It sounds like it's worth a try for you husband to take it; you'll never know if you don't.

                                                  Here's hoping and praying for you that it works.

                                                  Karen

                                                   

                                                  • February 26, 2014 at 5:49 am
                                                  Michelem
                                                  Participant

                                                    Thank you, Daniel. I don't know about implant of TIL cells? What is that?

                                                    My husband is having lots of abdominal distension and inability to urinate . . . doc says the ipi is not keeping in front of the cancer so that is why he is trying temodar. We are afraid the liver is failing  . . . things seem very grim.  mm

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