Which Treatment Next following Ipi, Chemo?

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

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

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

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

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

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

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        

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        

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.

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.