› Forums › General Melanoma Community › Tafinlar-Mekinist Combo may not be working…. Options?
- This topic has 21 replies, 3 voices, and was last updated 12 years, 2 months ago by
zbudimir.
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- November 28, 2013 at 2:51 pm
Hi Everyone,
My dad was on Zelboraf for over a year. In October this year, he started feeling sick and was in and out of the emergency room for about 3 weeks. During these 3 weeks he was not taking Zelboraf or anything else to treat his melanoma. His doctor (who didn't even come to see him) prescribed him antibiotics and said that the spot they saw on his liver in the emergency room is just a cyst and not to worry because his last scans showed no tumors. The 3rd time he went to the emergency room in those 3 weeks they saw that the cancer has spread to his liver and pretty much all over his abdomen.
On 11/5, he started on the Mekinist/Tafinlar Combo. He responded in the matter of 2 days and we had high hopes. But, yesterday his blood results were poor and the doctor said that he has only few weeks left and that there are no other options available for him. She also said that clinically (by touch), he liver has shrunk in size.
The blood results are as follows:
11/5 11/15 11/27
Lactate Dehydrogenase 656 365 719
Alanine Aminotransferase 56 41 65
Alkaline Phosphatase 540 515 641
Aspartate Aminotransferase 75 51 86
Has anyone else had the same experience? Do you have any suggestions or ideas on other options/treatments? Please help
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- November 28, 2013 at 4:31 pm
I'm afraid that I don't quite understand what has been going on with your father. You say that he was "feeling sick". Sick from what? Sick from cancer? Sick from Taflinar + MEK side effects? Sick from something non-melanoma related? Why did he stop taking Taflinar + MEK for 3 weeks? If the Taflinar + MEK was making him sick, why did he start taking it again? Did the antibiotics cure whatever was wrong with him? I assume that they did a CT scan during at leasts one of his trips to the emergency room. What did that show about his tumors?
All I can gather from what you wrote is that he was taking Taflinar + MEK and it was working. He stopped taking them for 3 weeks and his tumors grew. Now he is taking them again and he feels better and his tumors (or at least his liver) are shrinking. While blood chemistries are useful indicators, they are not 100% reliable for diagnosing disease progression. I wouldn't give them a heck of a lot of weight, especially if your father feels better and his liver is shrinking.
I suggest that the best thing you can do for now is pray that the drugs are working and wait for the next set of scans. Then you will know for sure.
If the next scans show that his tumors have become resistant to Taflinar + MEK, your doctor might suggest a traditional chemotherapy agent like Cisplating and/or Temodar or perhaps a Phase 1 clinical trial of some new drug. (Phase 1 because there is no "control arm" for Phase 1– everybody gets the drug.) You can check the clinicaltrials.gov web site and see if he would be elegible for any of them.
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- November 28, 2013 at 4:31 pm
I'm afraid that I don't quite understand what has been going on with your father. You say that he was "feeling sick". Sick from what? Sick from cancer? Sick from Taflinar + MEK side effects? Sick from something non-melanoma related? Why did he stop taking Taflinar + MEK for 3 weeks? If the Taflinar + MEK was making him sick, why did he start taking it again? Did the antibiotics cure whatever was wrong with him? I assume that they did a CT scan during at leasts one of his trips to the emergency room. What did that show about his tumors?
All I can gather from what you wrote is that he was taking Taflinar + MEK and it was working. He stopped taking them for 3 weeks and his tumors grew. Now he is taking them again and he feels better and his tumors (or at least his liver) are shrinking. While blood chemistries are useful indicators, they are not 100% reliable for diagnosing disease progression. I wouldn't give them a heck of a lot of weight, especially if your father feels better and his liver is shrinking.
I suggest that the best thing you can do for now is pray that the drugs are working and wait for the next set of scans. Then you will know for sure.
If the next scans show that his tumors have become resistant to Taflinar + MEK, your doctor might suggest a traditional chemotherapy agent like Cisplating and/or Temodar or perhaps a Phase 1 clinical trial of some new drug. (Phase 1 because there is no "control arm" for Phase 1– everybody gets the drug.) You can check the clinicaltrials.gov web site and see if he would be elegible for any of them.
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- November 28, 2013 at 9:23 pm
Pow, thanks for responding and let me try again.
My dad was diagnosed on 5/2012, Stage IV. He had surgery on 6/29/2012 to remove the lymph node in groin area. Cancer mets in the spleen. He started Zelboraf on 8/24/2012.
In October 2013, he started feeling nauseous and had pain in the abdomen. Doctor said don't worry no cancer, scans are clean.
About 2 weeks later…
1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.
2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.
3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.
On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him. I argued with them and got him the MEK + TAF combo that night.
11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.
About 2 weeks later, his results were great, as I mentioned above.
Another 2 weeks later, yesterday, results were worse than the day he was admitted.
The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.
My dad feels good, he is upbeat and no pain at all.
Now, my questions are:
1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?
2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.
Thanks!
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- November 28, 2013 at 9:23 pm
Pow, thanks for responding and let me try again.
My dad was diagnosed on 5/2012, Stage IV. He had surgery on 6/29/2012 to remove the lymph node in groin area. Cancer mets in the spleen. He started Zelboraf on 8/24/2012.
In October 2013, he started feeling nauseous and had pain in the abdomen. Doctor said don't worry no cancer, scans are clean.
About 2 weeks later…
1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.
2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.
3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.
On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him. I argued with them and got him the MEK + TAF combo that night.
11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.
About 2 weeks later, his results were great, as I mentioned above.
Another 2 weeks later, yesterday, results were worse than the day he was admitted.
The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.
My dad feels good, he is upbeat and no pain at all.
Now, my questions are:
1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?
2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.
Thanks!
-
- November 28, 2013 at 10:15 pm
Your dad could try Yervoy, an immunotherapy that can be prescribed. Check some other answers about other drugs at http://www.melanomaforum.org too. There is something by Jonathan you should check out. -
- November 28, 2013 at 10:15 pm
Your dad could try Yervoy, an immunotherapy that can be prescribed. Check some other answers about other drugs at http://www.melanomaforum.org too. There is something by Jonathan you should check out. -
- November 28, 2013 at 10:15 pm
Your dad could try Yervoy, an immunotherapy that can be prescribed. Check some other answers about other drugs at http://www.melanomaforum.org too. There is something by Jonathan you should check out. -
- November 28, 2013 at 11:42 pm
Thank you for the clarification. So it sounds like your father was doing well on Zelboraf but eventually progressed. Recently he was switched to Tafinlar + Mekinist and that was working. I have heard stories similar to that before– that Tafinlar + Mekinist can work with people who have become resistant to Zelboraf. So that's good.
If your father's melanoma is progressing again on Tafinlar + Mekinist, that's not good. For some people (my brother, for example) when the melanoma becomes resistant to BRAF inhibitors it seems to come back more aggressive than it was before. Doesn't happen to everybody, but to some. If you father's melanoma is wide spread and/or aggressive, then an immunotherapy probably wouldn't do much good; they take a couple of months to work.
I really can't offer you any more than I said before. Blood LDH doesn't tell the whole story. But even if your father got a CT scan and you see progression, what could you do? Not much. The traditional chemotherapies like Cisplatin and Temodar do work in some people, but only about 5% get a good response and there are some serious side effects. If your father is very debilitated, his body probably wouldn't tolerate them. The only other choice I know of would be a drug-based (not an immune based) Phase 1 clinical trial. Again, any immune-based treatment would take months to reach full effect.
Let's hope that the LDH levels are not indicating the true state of affairs and that your father really is responding to BRAF + MEK. I would also recommend that he start going to Yale all the time instead of seing whatever idiot took him off the Zelboraf and diagnosed a cyst! But try not to be too angry with the idiot. If your father was progressing on Zelboraf, the switcing to Taflinar + Mekinist would have been the only other option, anyway, and your father is doing that now.
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- November 28, 2013 at 11:42 pm
Thank you for the clarification. So it sounds like your father was doing well on Zelboraf but eventually progressed. Recently he was switched to Tafinlar + Mekinist and that was working. I have heard stories similar to that before– that Tafinlar + Mekinist can work with people who have become resistant to Zelboraf. So that's good.
If your father's melanoma is progressing again on Tafinlar + Mekinist, that's not good. For some people (my brother, for example) when the melanoma becomes resistant to BRAF inhibitors it seems to come back more aggressive than it was before. Doesn't happen to everybody, but to some. If you father's melanoma is wide spread and/or aggressive, then an immunotherapy probably wouldn't do much good; they take a couple of months to work.
I really can't offer you any more than I said before. Blood LDH doesn't tell the whole story. But even if your father got a CT scan and you see progression, what could you do? Not much. The traditional chemotherapies like Cisplatin and Temodar do work in some people, but only about 5% get a good response and there are some serious side effects. If your father is very debilitated, his body probably wouldn't tolerate them. The only other choice I know of would be a drug-based (not an immune based) Phase 1 clinical trial. Again, any immune-based treatment would take months to reach full effect.
Let's hope that the LDH levels are not indicating the true state of affairs and that your father really is responding to BRAF + MEK. I would also recommend that he start going to Yale all the time instead of seing whatever idiot took him off the Zelboraf and diagnosed a cyst! But try not to be too angry with the idiot. If your father was progressing on Zelboraf, the switcing to Taflinar + Mekinist would have been the only other option, anyway, and your father is doing that now.
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- November 29, 2013 at 12:02 am
Gene_S just started a thread titled "Melanoma Updates". One of the reports concerns a Phase I/II trial of PX-866 and Vemurafenib in Patients With Advanced Melanoma NCT01616199. Vemurafenib is the generic name for Zelboraf and PX-866 is another drug that inhibits kinases. The trial details are on ClinicalTrials.gov at http://clinicaltrials.gov/show/NCT01616199 I did not read the elegibility requirements and your father would have to go to New York, but it's something you could look into. Further searching on ClinicalTrials.gov could turn up other options.
You could also contact Catherine Poole at the Melanoma International Foundation (see http://melanomainternational.org/web-resources/clinical-trials/#.UpfXhNJDtIE ). She knows a lot about current melanoma clinical trials. Her contact information is on the link above.
Your father is very lucky to have such a strong advocate. I wish you both all the best.
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- November 29, 2013 at 12:02 am
Gene_S just started a thread titled "Melanoma Updates". One of the reports concerns a Phase I/II trial of PX-866 and Vemurafenib in Patients With Advanced Melanoma NCT01616199. Vemurafenib is the generic name for Zelboraf and PX-866 is another drug that inhibits kinases. The trial details are on ClinicalTrials.gov at http://clinicaltrials.gov/show/NCT01616199 I did not read the elegibility requirements and your father would have to go to New York, but it's something you could look into. Further searching on ClinicalTrials.gov could turn up other options.
You could also contact Catherine Poole at the Melanoma International Foundation (see http://melanomainternational.org/web-resources/clinical-trials/#.UpfXhNJDtIE ). She knows a lot about current melanoma clinical trials. Her contact information is on the link above.
Your father is very lucky to have such a strong advocate. I wish you both all the best.
-
- November 29, 2013 at 12:02 am
Gene_S just started a thread titled "Melanoma Updates". One of the reports concerns a Phase I/II trial of PX-866 and Vemurafenib in Patients With Advanced Melanoma NCT01616199. Vemurafenib is the generic name for Zelboraf and PX-866 is another drug that inhibits kinases. The trial details are on ClinicalTrials.gov at http://clinicaltrials.gov/show/NCT01616199 I did not read the elegibility requirements and your father would have to go to New York, but it's something you could look into. Further searching on ClinicalTrials.gov could turn up other options.
You could also contact Catherine Poole at the Melanoma International Foundation (see http://melanomainternational.org/web-resources/clinical-trials/#.UpfXhNJDtIE ). She knows a lot about current melanoma clinical trials. Her contact information is on the link above.
Your father is very lucky to have such a strong advocate. I wish you both all the best.
-
- November 28, 2013 at 11:42 pm
Thank you for the clarification. So it sounds like your father was doing well on Zelboraf but eventually progressed. Recently he was switched to Tafinlar + Mekinist and that was working. I have heard stories similar to that before– that Tafinlar + Mekinist can work with people who have become resistant to Zelboraf. So that's good.
If your father's melanoma is progressing again on Tafinlar + Mekinist, that's not good. For some people (my brother, for example) when the melanoma becomes resistant to BRAF inhibitors it seems to come back more aggressive than it was before. Doesn't happen to everybody, but to some. If you father's melanoma is wide spread and/or aggressive, then an immunotherapy probably wouldn't do much good; they take a couple of months to work.
I really can't offer you any more than I said before. Blood LDH doesn't tell the whole story. But even if your father got a CT scan and you see progression, what could you do? Not much. The traditional chemotherapies like Cisplatin and Temodar do work in some people, but only about 5% get a good response and there are some serious side effects. If your father is very debilitated, his body probably wouldn't tolerate them. The only other choice I know of would be a drug-based (not an immune based) Phase 1 clinical trial. Again, any immune-based treatment would take months to reach full effect.
Let's hope that the LDH levels are not indicating the true state of affairs and that your father really is responding to BRAF + MEK. I would also recommend that he start going to Yale all the time instead of seing whatever idiot took him off the Zelboraf and diagnosed a cyst! But try not to be too angry with the idiot. If your father was progressing on Zelboraf, the switcing to Taflinar + Mekinist would have been the only other option, anyway, and your father is doing that now.
-
- November 28, 2013 at 9:23 pm
Pow, thanks for responding and let me try again.
My dad was diagnosed on 5/2012, Stage IV. He had surgery on 6/29/2012 to remove the lymph node in groin area. Cancer mets in the spleen. He started Zelboraf on 8/24/2012.
In October 2013, he started feeling nauseous and had pain in the abdomen. Doctor said don't worry no cancer, scans are clean.
About 2 weeks later…
1st trip to the emergency room in October 2013 – Got IV. Stopped taking Zelboraf. Scan showed something on the liver. Doctor said take antibiotics, not to worry, no cancer, it's probably just a cyst.
2nd trip, a week later – scan showed cancer all over liver and abdomen. IV. Continue taking antibiotics.
3rd trip, another week later – IV, sent home. Called the doctor, same message, don't worry, we'll start him on something else.
On the next day, 11/5/2013, I took him to Yale. Doctor said he has few days left due to no treatment and admitted him. I argued with them and got him the MEK + TAF combo that night.
11/5/2013 he started taking the MEK + TAF combo. His blood results showed improvement after 2 days and he was released.
About 2 weeks later, his results were great, as I mentioned above.
Another 2 weeks later, yesterday, results were worse than the day he was admitted.
The doctor said she can't say whether or not the combo is not working becuase she doesn't know. We have to wait for another blood test in 2 more weeks.
My dad feels good, he is upbeat and no pain at all.
Now, my questions are:
1. Has anyone experienced the same results after taking the combo? In other words, given that he feels so good, could the results be a fluke and the combo is really working?
2. Does anyone have any other recommendation if in fact the combo isn't working? The doctor told me that there are no other options but chemo which will not do much for him.
Thanks!
-
- November 28, 2013 at 4:31 pm
I'm afraid that I don't quite understand what has been going on with your father. You say that he was "feeling sick". Sick from what? Sick from cancer? Sick from Taflinar + MEK side effects? Sick from something non-melanoma related? Why did he stop taking Taflinar + MEK for 3 weeks? If the Taflinar + MEK was making him sick, why did he start taking it again? Did the antibiotics cure whatever was wrong with him? I assume that they did a CT scan during at leasts one of his trips to the emergency room. What did that show about his tumors?
All I can gather from what you wrote is that he was taking Taflinar + MEK and it was working. He stopped taking them for 3 weeks and his tumors grew. Now he is taking them again and he feels better and his tumors (or at least his liver) are shrinking. While blood chemistries are useful indicators, they are not 100% reliable for diagnosing disease progression. I wouldn't give them a heck of a lot of weight, especially if your father feels better and his liver is shrinking.
I suggest that the best thing you can do for now is pray that the drugs are working and wait for the next set of scans. Then you will know for sure.
If the next scans show that his tumors have become resistant to Taflinar + MEK, your doctor might suggest a traditional chemotherapy agent like Cisplating and/or Temodar or perhaps a Phase 1 clinical trial of some new drug. (Phase 1 because there is no "control arm" for Phase 1– everybody gets the drug.) You can check the clinicaltrials.gov web site and see if he would be elegible for any of them.
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