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Which Treatment Next following Ipi, Chemo?

Forums General Melanoma Community Which Treatment Next following Ipi, Chemo?

  • Post
    Linda/Kentucky
    Participant

    Just returned home from looong 2 days of scans, bloodwork and office visits.  Wish I could say results were good but I'd be lying.  After 6 months of following the Ipi trial I hate to report John was definitely not a responder….. I really didn't need thousands of dollars in scans and bloodwork to tell us this. We kind of felt it all along.  I'm really not on here to criticize the use of Ipi.

    Just returned home from looong 2 days of scans, bloodwork and office visits.  Wish I could say results were good but I'd be lying.  After 6 months of following the Ipi trial I hate to report John was definitely not a responder….. I really didn't need thousands of dollars in scans and bloodwork to tell us this. We kind of felt it all along.  I'm really not on here to criticize the use of Ipi. it was a crap shot and we lost this round.  I pray it helps others and please do not be discouraged we would do it all again.  This melanoma that got into my husband must be a fierce thing because from the very beginning it has literally resisted everything we have thrown at it up until now.  We also found out on top of tumor progression that he has a blood clot in his lung…. we now have to deal with.

    So here we are now back to square one…… My question is after surgery not an option, failed high dose IL-2 and now Ipi.  We may be looking at some type of Chemo as bad as I hate to say it.  Has anybody had any luck with chemo working at all?  We are also seriously thinking about the Novalis radiation (along with chemo) which is a very precise beam and works on bone,liver, lung.  Our oncologist today told us not to even consider DTIC.  He said Taxol/Carboplatin was a possible choice.  I have not researched any chemo therapies due to being told they usually don't work, well ok…….neither did the other one's we tried.  Sorry not had a very good day~ 

    Thanks for any advise given.

    Linda/Kentucky

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  • Replies
      JuleFL
      Participant

      Linda, I am so sorry to hear this news.  I was really hoping that John was a responder.  I continue to pray that the best path will present itself to you soon.  God bless you and John.

      Jule

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      JuleFL
      Participant

      Linda, I am so sorry to hear this news.  I was really hoping that John was a responder.  I continue to pray that the best path will present itself to you soon.  God bless you and John.

      Jule

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      ValinMtl
      Participant

      Hi Linda, I'm so sorry to hear John is not a responder.  I've just had ipi treatment #2 and praying it works.  I have been trying to organize a plan B and I did have a correspondence with somebody only a few weeks ago who advised that her husband had not responded to ipi and was immediately able to take biochem..Unfortunately Diana2 does not have a profile on this BB (hope she's reading this and can provide an update) but I have cut and pasted some of our correspondence on BB, I hope it helps:

      "His 12 wk scans showed mel worse everywhere. Maybe Ipi was working or maybe not… Biochemotherapy includes 5 drugs: 3 chemos (cisplatin, dacarbazine, vinblastine) & 2 immune boosting biologic agents (IL-2, interferon). The therapy is pretty intense & involves a hospital stay of 5 days while receiving the drugs through IV then 2 wks at home to recover. The nurses were great helping manage side effects both in the hospital & at home (nausea, diarrhea, fever, loss of appetite, fluid retention, fatigue, weakness, low potassium). "

      "Each day at home gets a little better & this week most side effects are gone & he's feeling almost human again. It's a very toxic treatment but toxicity is sometimes what it takes. 2 weeks after starting biochemo, tumors are shrinking"

      http://clinicaltrials.gov/ct2/show/NCT01155453

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        ValinMtl
        Participant

        Sorry the 'clinical trial web page" is not part of the info. But here is a little bit more:

        'her husband was doing biochemo with Dr. Gonzalez at the CU Melanoma Clinic (University of Colorado hospital) in Aurora (a suburb of Denver).', if your doctors wanted to consult with him.  Val

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        ValinMtl
        Participant

        Sorry the 'clinical trial web page" is not part of the info. But here is a little bit more:

        'her husband was doing biochemo with Dr. Gonzalez at the CU Melanoma Clinic (University of Colorado hospital) in Aurora (a suburb of Denver).', if your doctors wanted to consult with him.  Val

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      ValinMtl
      Participant

      Hi Linda, I'm so sorry to hear John is not a responder.  I've just had ipi treatment #2 and praying it works.  I have been trying to organize a plan B and I did have a correspondence with somebody only a few weeks ago who advised that her husband had not responded to ipi and was immediately able to take biochem..Unfortunately Diana2 does not have a profile on this BB (hope she's reading this and can provide an update) but I have cut and pasted some of our correspondence on BB, I hope it helps:

      "His 12 wk scans showed mel worse everywhere. Maybe Ipi was working or maybe not… Biochemotherapy includes 5 drugs: 3 chemos (cisplatin, dacarbazine, vinblastine) & 2 immune boosting biologic agents (IL-2, interferon). The therapy is pretty intense & involves a hospital stay of 5 days while receiving the drugs through IV then 2 wks at home to recover. The nurses were great helping manage side effects both in the hospital & at home (nausea, diarrhea, fever, loss of appetite, fluid retention, fatigue, weakness, low potassium). "

      "Each day at home gets a little better & this week most side effects are gone & he's feeling almost human again. It's a very toxic treatment but toxicity is sometimes what it takes. 2 weeks after starting biochemo, tumors are shrinking"

      http://clinicaltrials.gov/ct2/show/NCT01155453

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      EricNJill
      Participant

      Hi Linda,

      Sorry to hear what you are going through.  Eric has been in treatment after treatment for almost two years now so I know what you mean when you say you think it's fierce.  Eric has been on did a month of HD Interferon then 7 months of LD Interferon with progression to Stage 4.  Then he did a trial of Carboplatin, Abraxane and Avastin with progression, so they put him on one dose of Temodar to be on something until he started IL-2.  He did 44 rounds of IL-2 with progression and then we were sent to a specialist in Pittsburgh.  He did a Vacinne and progressed during that so now he's on a Intralymphatic Vacinne and sadly I think he's progressing during this also.  We took off his bandages last night and his tumors just looked awful (he has vascular tumors that burst so we have to bandage them).  Our next hope was IPI, but we've been told that the response rate was less than IL-2 so they wanted us to try other options that were currently available first.

      I'm so sorry to hear that IPI didn't work for you guys.  We've been told that Eric's Melanoma is a very aggressive form.  You just have to hope that you find that one clinical trial that works for you!

      If your husband gets sick easily, I highly recommend that you use Emend for vomitting.  You get it with the chemo and then take a pill for two days after.  It's the only drug that helped Eric. 

      Good Luck to you.  Jill N Eric In Ohio

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      EricNJill
      Participant

      Hi Linda,

      Sorry to hear what you are going through.  Eric has been in treatment after treatment for almost two years now so I know what you mean when you say you think it's fierce.  Eric has been on did a month of HD Interferon then 7 months of LD Interferon with progression to Stage 4.  Then he did a trial of Carboplatin, Abraxane and Avastin with progression, so they put him on one dose of Temodar to be on something until he started IL-2.  He did 44 rounds of IL-2 with progression and then we were sent to a specialist in Pittsburgh.  He did a Vacinne and progressed during that so now he's on a Intralymphatic Vacinne and sadly I think he's progressing during this also.  We took off his bandages last night and his tumors just looked awful (he has vascular tumors that burst so we have to bandage them).  Our next hope was IPI, but we've been told that the response rate was less than IL-2 so they wanted us to try other options that were currently available first.

      I'm so sorry to hear that IPI didn't work for you guys.  We've been told that Eric's Melanoma is a very aggressive form.  You just have to hope that you find that one clinical trial that works for you!

      If your husband gets sick easily, I highly recommend that you use Emend for vomitting.  You get it with the chemo and then take a pill for two days after.  It's the only drug that helped Eric. 

      Good Luck to you.  Jill N Eric In Ohio

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      Diana2
      Participant

      Hi Linda,

      I'm so sorry your husband didn't respond to Ipi. I was really hoping he was a late responder. I'm so sad for you after all the waiting & all that you've been through already. Well, I don't have too much to add to Val's reply earlier regarding my husband & biochemo. Other than he started round 2 this week & is handling the toxicity better this time – less side effects. Still no piece of cake but not quite as rough. No new scans yet since the 12 wk ones after 4th cycle of Ipi. All we know is that 2 wks after starting round 1 of biochemo, 2 lymph nodes were shrinking. One by as much as 50%. We're hoping the biochemo is attacking from a new angle with a new set of drugs. The only one of the 5 biochemo drugs that Steve's had before is Interferon back in 2008 so basically 4 new drugs that his body hasn't seen before. Let me know if I can answer any questions about biochemo. Good luck & I wish you and your husband the best. -Diana        

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        ValinMtl
        Participant

        Thanks for the update Diana. Let's pray that this is the solution for Steve. Val

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        Diana2
        Participant

        Thanks so much Val! I'm really hoping & praying Ipi does the trick for you. Good luck with the next cycles & keep us posted. -Diana

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        Diana2
        Participant

        Thanks so much Val! I'm really hoping & praying Ipi does the trick for you. Good luck with the next cycles & keep us posted. -Diana

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        ValinMtl
        Participant

        Thanks for the update Diana. Let's pray that this is the solution for Steve. Val

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      Diana2
      Participant

      Hi Linda,

      I'm so sorry your husband didn't respond to Ipi. I was really hoping he was a late responder. I'm so sad for you after all the waiting & all that you've been through already. Well, I don't have too much to add to Val's reply earlier regarding my husband & biochemo. Other than he started round 2 this week & is handling the toxicity better this time – less side effects. Still no piece of cake but not quite as rough. No new scans yet since the 12 wk ones after 4th cycle of Ipi. All we know is that 2 wks after starting round 1 of biochemo, 2 lymph nodes were shrinking. One by as much as 50%. We're hoping the biochemo is attacking from a new angle with a new set of drugs. The only one of the 5 biochemo drugs that Steve's had before is Interferon back in 2008 so basically 4 new drugs that his body hasn't seen before. Let me know if I can answer any questions about biochemo. Good luck & I wish you and your husband the best. -Diana        

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      jag
      Participant

      Linda, Very sorry to hear this news, are any of your oncologists familiar with biochemotherapy?  either that or the BRAF trial or an oncovex vaccine trial would be things I would definitely consider. 

      http://www.clinicaltrials.gov

      type in melanoma and whatever you are looking for.  Any further questions and we would be happy to help.

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      jag
      Participant

      Linda, Very sorry to hear this news, are any of your oncologists familiar with biochemotherapy?  either that or the BRAF trial or an oncovex vaccine trial would be things I would definitely consider. 

      http://www.clinicaltrials.gov

      type in melanoma and whatever you are looking for.  Any further questions and we would be happy to help.

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