› Forums › General Melanoma Community › Needing plan B, Dasatinib trial did not work.
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lrkg1234.
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- November 18, 2012 at 5:01 pm
Well, here we go again. My husband Scott had been on the Dasatinib trial here in Indianapolis. He is stage four with inoperable tumor in the esophagus as the primary location and liver mets. We could tell that the drug did not seem to be working and he got a scan early, proving that it was not working. The existing tumors had grown some, but there was not any spreading. He was kicked out of the trial and we are in an information gathering state right now, trying to come up with a plan B.
Well, here we go again. My husband Scott had been on the Dasatinib trial here in Indianapolis. He is stage four with inoperable tumor in the esophagus as the primary location and liver mets. We could tell that the drug did not seem to be working and he got a scan early, proving that it was not working. The existing tumors had grown some, but there was not any spreading. He was kicked out of the trial and we are in an information gathering state right now, trying to come up with a plan B.
There have been so many conflicting doctor opinions that it's very difficult to make a decsion. Here is what has happened so far.
Dr. Fecher
We met with the melanoma doctor here, Dr. Fecher. She suggested a PEG feeding tube be inserted before things get too bad. Sounds horrible and I'm so sorry for Scott having to get this, but he is going to do it the Monday after thanksgiving. She also sent us to a radiologist to see about getting a few quick zaps in the esophagus to possibly shrink the tumor.
After we met with the radiologist he suggested a stent now and then possibly radiation later. He did not seem sold on the radiation – NOT encouraging. Also a lot to absorb because Dr. Fecher does not like stents.
Dr. Fecher then met with her tumor board at the hospital. She said the general opinion was radiation would be bad, forget that idea and go for chemo. It makes me very uncomfortable that she changes her mind on the radiation after previously making the recommendation. Scott could have easily already had the radiation treatment with the possible damage already done. Doctor Fecher does not like IL 2 for Scott because she said possible vomitting would be bad on the esophagus/throat. I thought the chemo would make you vomit too??? She just wants to do the chemo and then somthing else later, maybe another trial or wait and see if he can get into an anti-PD-1 trial or something else. She has not discussed IPI.
Vanderbilt, Dr. Puzanov
We went to Nashville on Wednesday and met with Dr. Puzanov. We wanted to get into the Anti PD-1 trial there. Too late. All of the slots are filled up. He thought radiation was NOT a good idea and said to never jump into anything. He was suggesting IL-2. Scott is strong enough and young enough to take it.
Moffit, Dr. Weber
Suggested IPI and maybe radiation later if that doesn't work.
Our opinion
After researching the chemo it didn't seem like the BEST idea. It could work, but could be done any time so why use it now? It does not seem like the most promising treatment. Ideally an anti PD-1 trial would be available, but we need a back up plan.
The two best treatments seem to be IPI or IL 2. I prefer the IPI because it takes a while to work. If the cancer progresses then he might not have time to try it. Scott is not sure which he would rather do. He likes the idea of IL2 because of quicker results and small possibility of a very durable response.
We want to make a decision and get started on treatment within 2 weeks. We are going to meet with the other Melanoma specialist at IU named Dr. Logan just to get a second opinion. Dr. Fecher says that Dr. Logan thinks chemo is a good idea, but we want to hear it come out of his mouth and not hers.
We are also going to meet with a general oncologist, Dr. Bhatia that we had worked with when Scott was first diagnosed. He is with Community North hospital. Community just joined into a partnership with MD Anderson on a cancer collaboration. Now Dr. Bhatia will have access to the opinions of the melanoma doctors at MD Anderson. That seemed like a real gift. It was just announced on Thursday of this week. Hopefully he will have a suggestion. When we originally met back in August he had thought that IL 2 was a good idea.
The stress of the decision making period is so horrible. None of this is easy, but the times between treatment seem to be the hardest. Any suggestions about what to do are appreciated.
Lisa (Scotts wife)
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- November 18, 2012 at 5:46 pm
Lisa,
What about intratumoral injections of IL-2 if the tumor is accessible? It has been shown that injecting the tumor has a 70% response rate. The problem is by thinking outside the box, you may have to find an oncologist to do the procedure.
I know of a person that did just that. No Oncologist would do the therapy in the States so, the patient that I know went down to Mexico to get the procedure done. He is still alive with the tumor stable/shrinking …
Best regards,
Jimmy B
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- November 18, 2012 at 5:46 pm
Lisa,
What about intratumoral injections of IL-2 if the tumor is accessible? It has been shown that injecting the tumor has a 70% response rate. The problem is by thinking outside the box, you may have to find an oncologist to do the procedure.
I know of a person that did just that. No Oncologist would do the therapy in the States so, the patient that I know went down to Mexico to get the procedure done. He is still alive with the tumor stable/shrinking …
Best regards,
Jimmy B
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- November 18, 2012 at 5:46 pm
Lisa,
What about intratumoral injections of IL-2 if the tumor is accessible? It has been shown that injecting the tumor has a 70% response rate. The problem is by thinking outside the box, you may have to find an oncologist to do the procedure.
I know of a person that did just that. No Oncologist would do the therapy in the States so, the patient that I know went down to Mexico to get the procedure done. He is still alive with the tumor stable/shrinking …
Best regards,
Jimmy B
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- November 18, 2012 at 10:59 pm
Hi, Lisa-
I'm sorry that the Dasatinib trial didn't work for Scott. Since you are not mentioning Zelboraf, I assume that Scott's tumor does not have the BRAF mutation. From what I read, the various anti-PD-1 clinical trials are the most promising direction now. Merck just announced that they are about to start a trial of their version of anti-PD-1. You might look into that.
The problem is that no cancer treatment works for everybody or works forever. Most of them, including ipi and IL-2, only work in 15% of patients or less. For that reason, I would try surgery first. If you can't do surgery, do stereotactic radiosurgery. Then do a clinical trial, preferably with anti-PD-1 if possible. I would save the FDA approved treatments for last because you don't have to jump through any hoops to qualify for them.
And I agree with you. Given that IL-2 has a low probabililty of success and can have severe side-effects, I would try ipi (Yervoy) first. It has a somewhat higher probability of success against melanoma but it does take longer to work. Then again, the final decision has to be up to Scott.
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- November 18, 2012 at 10:59 pm
Hi, Lisa-
I'm sorry that the Dasatinib trial didn't work for Scott. Since you are not mentioning Zelboraf, I assume that Scott's tumor does not have the BRAF mutation. From what I read, the various anti-PD-1 clinical trials are the most promising direction now. Merck just announced that they are about to start a trial of their version of anti-PD-1. You might look into that.
The problem is that no cancer treatment works for everybody or works forever. Most of them, including ipi and IL-2, only work in 15% of patients or less. For that reason, I would try surgery first. If you can't do surgery, do stereotactic radiosurgery. Then do a clinical trial, preferably with anti-PD-1 if possible. I would save the FDA approved treatments for last because you don't have to jump through any hoops to qualify for them.
And I agree with you. Given that IL-2 has a low probabililty of success and can have severe side-effects, I would try ipi (Yervoy) first. It has a somewhat higher probability of success against melanoma but it does take longer to work. Then again, the final decision has to be up to Scott.
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- November 18, 2012 at 10:59 pm
Hi, Lisa-
I'm sorry that the Dasatinib trial didn't work for Scott. Since you are not mentioning Zelboraf, I assume that Scott's tumor does not have the BRAF mutation. From what I read, the various anti-PD-1 clinical trials are the most promising direction now. Merck just announced that they are about to start a trial of their version of anti-PD-1. You might look into that.
The problem is that no cancer treatment works for everybody or works forever. Most of them, including ipi and IL-2, only work in 15% of patients or less. For that reason, I would try surgery first. If you can't do surgery, do stereotactic radiosurgery. Then do a clinical trial, preferably with anti-PD-1 if possible. I would save the FDA approved treatments for last because you don't have to jump through any hoops to qualify for them.
And I agree with you. Given that IL-2 has a low probabililty of success and can have severe side-effects, I would try ipi (Yervoy) first. It has a somewhat higher probability of success against melanoma but it does take longer to work. Then again, the final decision has to be up to Scott.
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- November 19, 2012 at 7:08 am
Since Scott was in the Dasatinib trial, I would assume he has the C-kit onco-protein/DNA mutation. May I ask if they told you exactly which of the possible DNA mutations his tumors have, and which it is ?
If y'all do decide to go the IL-2 route, I highly recommend that you note the timing of when the first signs of nausa (and the Rigors) are experienced. Often the side-effects follow a regular timetable so it pays to have the meds to counter them immediately available. I was talking to a lady yesterday that said she could actually sit her watch by the timing when the side effects would hit her after receiving each IL-2 bag. I agree that extreme vomiting would be bad on the esophgus, but the worst should be avoidable by being ready with the counter measures. Be sure that your IL-2 team is very experieced and knows to react immediately when you call them (or hunt them down as the case may be.) Nice to have someone stay with the patient during these times when he is unlikely to be able to run down nursing help if they don't respond FAST.
I have a friend that doesn't like to discuss their specific treatments too much, but after we had a discussion on the fact that many things kill melanmoa cells in a petri dish, very few make it thru the path into medicines one can take orally and have the same effect. To me it has always seemed that if one has a limited number of tumors that the direct intratumoral injections should be tried. (Seems it might also slow down the most rapidily growing tumors even if one has many slower growth ones as wel.) It took much work on his part but finally his oncologist in conjunction with Oncologists at MDAnderson (Wen Jen Hwu) agreed to try his requested approach. He had numerous tumor in a leg. Over two years ago they tried different drugs into the tumors. One of the two drugs worked, the other didn't, so they then changed the second drug and the remaining tumors slowly retracted. IL-2 and IL-7 were two of the drugs that they injected into his tumors .He is still with us fighting this disease.
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- November 19, 2012 at 7:08 am
Since Scott was in the Dasatinib trial, I would assume he has the C-kit onco-protein/DNA mutation. May I ask if they told you exactly which of the possible DNA mutations his tumors have, and which it is ?
If y'all do decide to go the IL-2 route, I highly recommend that you note the timing of when the first signs of nausa (and the Rigors) are experienced. Often the side-effects follow a regular timetable so it pays to have the meds to counter them immediately available. I was talking to a lady yesterday that said she could actually sit her watch by the timing when the side effects would hit her after receiving each IL-2 bag. I agree that extreme vomiting would be bad on the esophgus, but the worst should be avoidable by being ready with the counter measures. Be sure that your IL-2 team is very experieced and knows to react immediately when you call them (or hunt them down as the case may be.) Nice to have someone stay with the patient during these times when he is unlikely to be able to run down nursing help if they don't respond FAST.
I have a friend that doesn't like to discuss their specific treatments too much, but after we had a discussion on the fact that many things kill melanmoa cells in a petri dish, very few make it thru the path into medicines one can take orally and have the same effect. To me it has always seemed that if one has a limited number of tumors that the direct intratumoral injections should be tried. (Seems it might also slow down the most rapidily growing tumors even if one has many slower growth ones as wel.) It took much work on his part but finally his oncologist in conjunction with Oncologists at MDAnderson (Wen Jen Hwu) agreed to try his requested approach. He had numerous tumor in a leg. Over two years ago they tried different drugs into the tumors. One of the two drugs worked, the other didn't, so they then changed the second drug and the remaining tumors slowly retracted. IL-2 and IL-7 were two of the drugs that they injected into his tumors .He is still with us fighting this disease.
-
- November 19, 2012 at 7:08 am
Since Scott was in the Dasatinib trial, I would assume he has the C-kit onco-protein/DNA mutation. May I ask if they told you exactly which of the possible DNA mutations his tumors have, and which it is ?
If y'all do decide to go the IL-2 route, I highly recommend that you note the timing of when the first signs of nausa (and the Rigors) are experienced. Often the side-effects follow a regular timetable so it pays to have the meds to counter them immediately available. I was talking to a lady yesterday that said she could actually sit her watch by the timing when the side effects would hit her after receiving each IL-2 bag. I agree that extreme vomiting would be bad on the esophgus, but the worst should be avoidable by being ready with the counter measures. Be sure that your IL-2 team is very experieced and knows to react immediately when you call them (or hunt them down as the case may be.) Nice to have someone stay with the patient during these times when he is unlikely to be able to run down nursing help if they don't respond FAST.
I have a friend that doesn't like to discuss their specific treatments too much, but after we had a discussion on the fact that many things kill melanmoa cells in a petri dish, very few make it thru the path into medicines one can take orally and have the same effect. To me it has always seemed that if one has a limited number of tumors that the direct intratumoral injections should be tried. (Seems it might also slow down the most rapidily growing tumors even if one has many slower growth ones as wel.) It took much work on his part but finally his oncologist in conjunction with Oncologists at MDAnderson (Wen Jen Hwu) agreed to try his requested approach. He had numerous tumor in a leg. Over two years ago they tried different drugs into the tumors. One of the two drugs worked, the other didn't, so they then changed the second drug and the remaining tumors slowly retracted. IL-2 and IL-7 were two of the drugs that they injected into his tumors .He is still with us fighting this disease.
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