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It’s official. IPI Non-Responder!

Forums General Melanoma Community It’s official. IPI Non-Responder!

  • Post
    Jan in OC
    Participant

      Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read…….

      Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read…….

      CT of Ab and Pelvis:  "interval worsening of hyperattenuating hepatic lesions.  In addition confluent gastrohepatic, peri celiac, and portacaval nodal densities appear larger.  New splenic lesions are seen.  Left lobe now 4.3 x 4.1 cm, was 3.8 x 4.4 cm.  Caudate lobe now 3.6 x 4.8 cm, was 15 x 19 mm.  Right iliac lymph node now 2 x 2.2 cm, was 17 x 19 mm.  Final Impression: Progression of hepatic metastases, and nodal metastases.  New splenic metastases".

      CT of Chest:  "Interval enlargement of multiple thoracic lymph nodes.  interval enlargement of multiple , at least 8, soft tissue nodules within the thoracic chest wall with at least one new nodule see.  Interval increase in size and number now numbering in excess of 100 pulmonary parenchymal micro and macro nodules.  Focal point of peribronchovascular involvement is seen within the left upper lobe concerning lymphatic involvement.  Right paraesophageal lymph node now 16 x 15 mm, was 9 x 7 mm.  Right lateral chest wall nodule now 22 x 17 mm, was 15 x 14 mm.  Left lower lobe now 14 x 13 mm, was 8.3 x 8 mm".

      "Multiple thoracic vertebral body lesions with compression fractures of T8 and T5 with patency of spinal canal.  Height loss of the T8 vertebral body associated with interval development of multiple lytic lesions within the T5, T6, T9 vertebral bodies.  Final impression: Interval increase of pulmonary nodal, chest wall metastases.  Multiple vertebral bone metastases with compression fractures of spinal canal"

      Basically lots of big words to say he is getting worse and this nasty disease has now spread to his bones. All I gotta say is #$%&@#$%&*!!!

      Doc is now worried that the Brain mets may be reappearing, so moving up the timeframe on the MRI.  Very few options offered to us right now. We are  feeling a wee bit depressed.  Just can't get any good news!  Waiting on MRI to figure out what we can do next.

      Jan, wife to dirk

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    • Replies
        James from Sydney
        Participant

          Jan, i'm sorry to read about the progression. I did read an encouraging post by Vickirs on a new drug that can show results quickly. Its E7080, look for her post about 7 down.

          best wishes

          James

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            Jan in OC
            Participant

              Thanks, he already got bumped from the e-7080 during qualifying due to brain mets.

              Jan

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              James from Sydney
              Participant

                Here is the Trial number 01136967. I understand there are a few different Trials, i looked it up and Brain Mets are not an exclusion.

                best wishes

                James

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                James from Sydney
                Participant

                  Here is the Trial number 01136967. I understand there are a few different Trials, i looked it up and Brain Mets are not an exclusion.

                  best wishes

                  James

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                  Jan in OC
                  Participant

                    Thanks, he already got bumped from the e-7080 during qualifying due to brain mets.

                    Jan

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                  James from Sydney
                  Participant

                    Jan, i'm sorry to read about the progression. I did read an encouraging post by Vickirs on a new drug that can show results quickly. Its E7080, look for her post about 7 down.

                    best wishes

                    James

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                    ValinMtl
                    Participant

                      I agree with you crap and more crap, I hate this disease.  I'm so sorry Jan for both Dirk and yourself as his caregiver.  If this 2nd round of 4 treatments of ipi doesn't work for me, I'm thinking IL-2, Jim B. has recommended this direction before and I am keeping it in mind…any chance of Dirk qualifying for this one..it's nasty but if it works it works well.  Val

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                      ValinMtl
                      Participant

                        I agree with you crap and more crap, I hate this disease.  I'm so sorry Jan for both Dirk and yourself as his caregiver.  If this 2nd round of 4 treatments of ipi doesn't work for me, I'm thinking IL-2, Jim B. has recommended this direction before and I am keeping it in mind…any chance of Dirk qualifying for this one..it's nasty but if it works it works well.  Val

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                        FormerCaregiver
                        Participant

                          I am saddened to read of Dirk's setback. It seems that the tumour load is becoming too
                          much for treatments to be effective.

                          My prayers are with you and your family.

                          Frank from Australia

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                          FormerCaregiver
                          Participant

                            I am saddened to read of Dirk's setback. It seems that the tumour load is becoming too
                            much for treatments to be effective.

                            My prayers are with you and your family.

                            Frank from Australia

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                            jim Breitfeller
                            Participant

                              Jan,

                              I think Frank is right. The tumor burden is to large for the therapy. Ipi (Yervoy)  was 3 mg/ Kg  dose, but the optimal dose concentration is 10mg/Kg. With all the tumor sites, the Ipi therapy never reached the minimum threshold to break the surpressiveness of the Tregs cells. You may want to try HD IL-2 or Biochemo therapy

                               

                              Warm Regards

                              Jimmy B

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                                Vermont_Donna
                                Participant

                                  Dear Jan and Dirk,

                                  NEVER give up! Its ok to feel a "wee bit depressed" as you stated but recognize that is a reasonable response to what appears to be hopeless news. BUT we have all seen people with advanced disease find the treatment that turns things around and he can live happily and stable at stage 4…..Jimmy B has some advice and it may be the path to follow. Please know that we care and are hoping for the miracle you need right now!

                                  Hugs,

                                  Vermont_Donna, stage 3a

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                                  Carol Taylor
                                  Participant

                                    Jan and Dirk,

                                    Vermont_Donna's so right! Never give up hope! We're praying for you two and holding out all the best.

                                    Oh Lord, sometimes life can be so overwhelming and situations can seem so dire and we get depressed and can feel so hopeless. God, somehow, speak into this entire situation. Open doors, crack windows open, anything to make a way for Jan and Dirk. Hold them close. In Your mercy. Amen.

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                                    Carol Taylor
                                    Participant

                                      Jan and Dirk,

                                      Vermont_Donna's so right! Never give up hope! We're praying for you two and holding out all the best.

                                      Oh Lord, sometimes life can be so overwhelming and situations can seem so dire and we get depressed and can feel so hopeless. God, somehow, speak into this entire situation. Open doors, crack windows open, anything to make a way for Jan and Dirk. Hold them close. In Your mercy. Amen.

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                                      Vermont_Donna
                                      Participant

                                        Dear Jan and Dirk,

                                        NEVER give up! Its ok to feel a "wee bit depressed" as you stated but recognize that is a reasonable response to what appears to be hopeless news. BUT we have all seen people with advanced disease find the treatment that turns things around and he can live happily and stable at stage 4…..Jimmy B has some advice and it may be the path to follow. Please know that we care and are hoping for the miracle you need right now!

                                        Hugs,

                                        Vermont_Donna, stage 3a

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                                      jim Breitfeller
                                      Participant

                                        Jan,

                                        I think Frank is right. The tumor burden is to large for the therapy. Ipi (Yervoy)  was 3 mg/ Kg  dose, but the optimal dose concentration is 10mg/Kg. With all the tumor sites, the Ipi therapy never reached the minimum threshold to break the surpressiveness of the Tregs cells. You may want to try HD IL-2 or Biochemo therapy

                                         

                                        Warm Regards

                                        Jimmy B

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                                        Jan in OC
                                        Participant

                                          Thanks so much for the response and helpful words.  I am just so overwhelmed, scared & tired right now.  

                                          I still need to fund us a place to live and get moved to Houston next week (he wants to go to MD Anderson).  The timing sucks, but just we just roll on. Is there anyone who lives in Houston  to guide me to the areas to look and areas to stay away from?  Renting a place sight unseen is scary, especially if they want a lease!!

                                          Thanks

                                          Jan, wife to Dirk

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                                            ValinMtl
                                            Participant

                                              I will ask my cousin who lives in Houston about 'safe' areas and hopefully will get back to you soon.  Val

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                                              ValinMtl
                                              Participant

                                                Hi Jan

                                                My cousin's wife in Texas has called me and sent you an e-mail, hope you received it..if not let me know.  Rose is a terrific lady and I pray she can give you some guidance for accommodations.  Val xx

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                                                ValinMtl
                                                Participant

                                                  Hi Jan

                                                  My cousin's wife in Texas has called me and sent you an e-mail, hope you received it..if not let me know.  Rose is a terrific lady and I pray she can give you some guidance for accommodations.  Val xx

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                                                  Jan in OC
                                                  Participant

                                                    Val, 

                                                    Thanks, I got an email from Rose this morning and I will stay in contact with here. Thanks for the assist.

                                                    The docs at UCLA moved his MRI test up and we go tomorrow.  Will find out if his brain is still in one piece lol!  I have been getting estimates from movers, boy,  what sticker shock that is!!   We have too much crap!  And Dirk just can't give up any of it, he says it feels too much like he is dying.  Gotta lighten the load somewhere.  Packing like a lunatic in between doc visits.  Crazy!!

                                                    Jan

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                                                    Jan in OC
                                                    Participant

                                                      Val, 

                                                      Thanks, I got an email from Rose this morning and I will stay in contact with here. Thanks for the assist.

                                                      The docs at UCLA moved his MRI test up and we go tomorrow.  Will find out if his brain is still in one piece lol!  I have been getting estimates from movers, boy,  what sticker shock that is!!   We have too much crap!  And Dirk just can't give up any of it, he says it feels too much like he is dying.  Gotta lighten the load somewhere.  Packing like a lunatic in between doc visits.  Crazy!!

                                                      Jan

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                                                      ValinMtl
                                                      Participant

                                                        I will ask my cousin who lives in Houston about 'safe' areas and hopefully will get back to you soon.  Val

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                                                      Jan in OC
                                                      Participant

                                                        Thanks so much for the response and helpful words.  I am just so overwhelmed, scared & tired right now.  

                                                        I still need to fund us a place to live and get moved to Houston next week (he wants to go to MD Anderson).  The timing sucks, but just we just roll on. Is there anyone who lives in Houston  to guide me to the areas to look and areas to stay away from?  Renting a place sight unseen is scary, especially if they want a lease!!

                                                        Thanks

                                                        Jan, wife to Dirk

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                                                        jag
                                                        Participant

                                                          Jan, I will say a prayer that things turn around for you and you and Dirk have the strength to get through all of this.

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                                                          jag
                                                          Participant

                                                            Jan, I will say a prayer that things turn around for you and you and Dirk have the strength to get through all of this.

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                                                            boot2aboot
                                                            Participant

                                                              i am sorry i have nothing to offer you except an expressed belief in miracles and to say a prayer for you both

                                                              blessings 

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                                                              boot2aboot
                                                              Participant

                                                                i am sorry i have nothing to offer you except an expressed belief in miracles and to say a prayer for you both

                                                                blessings 

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                                                                dgkendall
                                                                Participant

                                                                  Jan ,

                                                                  So sorry to read about your sad situation. Didn't know we were neighbors, as we live in Laguna Hills and seeing Dr. Ribas also. We had MRI and other scans last week, and starting E7080 on Monday. I will follow your journey.

                                                                  God bless,

                                                                  Dale.

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                                                                  dgkendall
                                                                  Participant

                                                                    Jan ,

                                                                    So sorry to read about your sad situation. Didn't know we were neighbors, as we live in Laguna Hills and seeing Dr. Ribas also. We had MRI and other scans last week, and starting E7080 on Monday. I will follow your journey.

                                                                    God bless,

                                                                    Dale.

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