› Forums › General Melanoma Community › zelboraf, yervoy and WBR
- This topic has 21 replies, 5 voices, and was last updated 10 years, 9 months ago by
Hopeful29.
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- July 16, 2013 at 2:38 am
My mom has stage IV. Adrenal glands, lymph nodes, spleen, vaginal and brain. Initially, she was tested to see if she had the mutated Braf gene. We were told she did not, so was not a fit for zelboraf. She is almost finished with yervoy and recently started WBR. the Dr. Told us today that they did some more tests and found that one of her tests showed that she does have the braf. Her Dr.suggested that she take zelboraf along with everything else that she’s doing.
Anyone experience taking yervoy, zelboraf and WBR together???My mom has stage IV. Adrenal glands, lymph nodes, spleen, vaginal and brain. Initially, she was tested to see if she had the mutated Braf gene. We were told she did not, so was not a fit for zelboraf. She is almost finished with yervoy and recently started WBR. the Dr. Told us today that they did some more tests and found that one of her tests showed that she does have the braf. Her Dr.suggested that she take zelboraf along with everything else that she’s doing.
Anyone experience taking yervoy, zelboraf and WBR together???
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- July 16, 2013 at 2:52 am
I'm so sorry about your Mom, but the fact that she may bRaf+ is great news, as it opens up doors to several different treatments. I know that yervoy and WBR can be taken in combination but my husbands doc warned against either zelboraf + WBR or zelboraf+yervoy (liver tox). I would strongly suggest getting another opinion before starting this combo. My husband is currently on Zelboraf, and plans to switch to Ipi +/- WBR depending on the brain met load in a month or two… THis might be something to consider..
Best of luck,
Donna
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- July 16, 2013 at 2:52 am
I'm so sorry about your Mom, but the fact that she may bRaf+ is great news, as it opens up doors to several different treatments. I know that yervoy and WBR can be taken in combination but my husbands doc warned against either zelboraf + WBR or zelboraf+yervoy (liver tox). I would strongly suggest getting another opinion before starting this combo. My husband is currently on Zelboraf, and plans to switch to Ipi +/- WBR depending on the brain met load in a month or two… THis might be something to consider..
Best of luck,
Donna
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- July 16, 2013 at 2:52 am
I'm so sorry about your Mom, but the fact that she may bRaf+ is great news, as it opens up doors to several different treatments. I know that yervoy and WBR can be taken in combination but my husbands doc warned against either zelboraf + WBR or zelboraf+yervoy (liver tox). I would strongly suggest getting another opinion before starting this combo. My husband is currently on Zelboraf, and plans to switch to Ipi +/- WBR depending on the brain met load in a month or two… THis might be something to consider..
Best of luck,
Donna
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- July 16, 2013 at 5:15 am
Hello,
I am doing this combo except I'm doing gamma knife, finished SRS last month, did WBR back in January. I've been on Z for 6-7 months, it stopped working as well so now I'm on Ipi/yervoy too. I take Reishi Mushroom supplement which helps protect the liver. They did this combo in a trial and it was stopped due to liver toxicity. There were 2 arms, one had full dose Z with ipi, 4 out of 6 developed liver toxicity. The other arm was 1/2 dose Z with ipi, and 2 out of the 6 developed liver toxicity. What dosage of Z is she taking?
My doctors are checking my blood before each infusion and keeping a close eye on me. I am taking 3 x 2 zelborafs and had my first ipi infusion on July 4th. I went in for an MRI last week after having SRS on 2 of 7 brain mets and it showed only 6 mets and they all shrunk 50%. Don't know if it was combo of everything, Ipi, Z, and SRS. This approach is not FDA approved so it's an agressive doc you got, like me!! But it seems to be working for me. I'm going in for Gamma knife on July 25th around the same time as next Ipi infusion is due. My doctor wanted me to go with 2 x 2 on Zelboraf but I was too nervous to drop that low again since it quit working. I feel fine, a little fatigued but no nausea. Your mom may experience nausea from WBR and feel weak and tired. How many brain mets does your mom have? My specialist wished I didn't get WBR he said he would have done SRS or Gamma Knife from the get go but it's over and done for me now. You will unlikely find anyone with this combination, since it's not FDA approved. Just be sure they are checking her blood work regularly and educate yourself with liver toxicity symptoms.
Here's the kicker. My doc wants me in an Anti PD-1 trial as soon as possible. On average Z will quit working around 6-10 months. It does work longer in some people but they don't know why. This is what happened to me. I didn't prepare and got caught with more tumor load in my brain so at this point I don't qualify for trial. If Ipi isn't working and Z does you should try to get into Anti PD-1 trial when her brain is stable. When the Z quits working the tumor load comes back fast. I went from 1 tumor shrunk from Z and WBR to 7 mets at month 6 when Z quit on me, Now I'm playing beat the clock to get into a trial. Not sure when ANTI_PD1 will be FDA approved, my specialist says it could take another year, even on fast track. For me though I think the IPI/Zelboraf/Radiation combo is working, at least on my brain.
All my best,
Denise
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- July 16, 2013 at 5:15 am
Hello,
I am doing this combo except I'm doing gamma knife, finished SRS last month, did WBR back in January. I've been on Z for 6-7 months, it stopped working as well so now I'm on Ipi/yervoy too. I take Reishi Mushroom supplement which helps protect the liver. They did this combo in a trial and it was stopped due to liver toxicity. There were 2 arms, one had full dose Z with ipi, 4 out of 6 developed liver toxicity. The other arm was 1/2 dose Z with ipi, and 2 out of the 6 developed liver toxicity. What dosage of Z is she taking?
My doctors are checking my blood before each infusion and keeping a close eye on me. I am taking 3 x 2 zelborafs and had my first ipi infusion on July 4th. I went in for an MRI last week after having SRS on 2 of 7 brain mets and it showed only 6 mets and they all shrunk 50%. Don't know if it was combo of everything, Ipi, Z, and SRS. This approach is not FDA approved so it's an agressive doc you got, like me!! But it seems to be working for me. I'm going in for Gamma knife on July 25th around the same time as next Ipi infusion is due. My doctor wanted me to go with 2 x 2 on Zelboraf but I was too nervous to drop that low again since it quit working. I feel fine, a little fatigued but no nausea. Your mom may experience nausea from WBR and feel weak and tired. How many brain mets does your mom have? My specialist wished I didn't get WBR he said he would have done SRS or Gamma Knife from the get go but it's over and done for me now. You will unlikely find anyone with this combination, since it's not FDA approved. Just be sure they are checking her blood work regularly and educate yourself with liver toxicity symptoms.
Here's the kicker. My doc wants me in an Anti PD-1 trial as soon as possible. On average Z will quit working around 6-10 months. It does work longer in some people but they don't know why. This is what happened to me. I didn't prepare and got caught with more tumor load in my brain so at this point I don't qualify for trial. If Ipi isn't working and Z does you should try to get into Anti PD-1 trial when her brain is stable. When the Z quits working the tumor load comes back fast. I went from 1 tumor shrunk from Z and WBR to 7 mets at month 6 when Z quit on me, Now I'm playing beat the clock to get into a trial. Not sure when ANTI_PD1 will be FDA approved, my specialist says it could take another year, even on fast track. For me though I think the IPI/Zelboraf/Radiation combo is working, at least on my brain.
All my best,
Denise
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- July 16, 2013 at 5:15 am
Hello,
I am doing this combo except I'm doing gamma knife, finished SRS last month, did WBR back in January. I've been on Z for 6-7 months, it stopped working as well so now I'm on Ipi/yervoy too. I take Reishi Mushroom supplement which helps protect the liver. They did this combo in a trial and it was stopped due to liver toxicity. There were 2 arms, one had full dose Z with ipi, 4 out of 6 developed liver toxicity. The other arm was 1/2 dose Z with ipi, and 2 out of the 6 developed liver toxicity. What dosage of Z is she taking?
My doctors are checking my blood before each infusion and keeping a close eye on me. I am taking 3 x 2 zelborafs and had my first ipi infusion on July 4th. I went in for an MRI last week after having SRS on 2 of 7 brain mets and it showed only 6 mets and they all shrunk 50%. Don't know if it was combo of everything, Ipi, Z, and SRS. This approach is not FDA approved so it's an agressive doc you got, like me!! But it seems to be working for me. I'm going in for Gamma knife on July 25th around the same time as next Ipi infusion is due. My doctor wanted me to go with 2 x 2 on Zelboraf but I was too nervous to drop that low again since it quit working. I feel fine, a little fatigued but no nausea. Your mom may experience nausea from WBR and feel weak and tired. How many brain mets does your mom have? My specialist wished I didn't get WBR he said he would have done SRS or Gamma Knife from the get go but it's over and done for me now. You will unlikely find anyone with this combination, since it's not FDA approved. Just be sure they are checking her blood work regularly and educate yourself with liver toxicity symptoms.
Here's the kicker. My doc wants me in an Anti PD-1 trial as soon as possible. On average Z will quit working around 6-10 months. It does work longer in some people but they don't know why. This is what happened to me. I didn't prepare and got caught with more tumor load in my brain so at this point I don't qualify for trial. If Ipi isn't working and Z does you should try to get into Anti PD-1 trial when her brain is stable. When the Z quits working the tumor load comes back fast. I went from 1 tumor shrunk from Z and WBR to 7 mets at month 6 when Z quit on me, Now I'm playing beat the clock to get into a trial. Not sure when ANTI_PD1 will be FDA approved, my specialist says it could take another year, even on fast track. For me though I think the IPI/Zelboraf/Radiation combo is working, at least on my brain.
All my best,
Denise
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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- July 16, 2013 at 6:32 pm
I did Ipi, SRS, and Zelboraf 3×3, ended up with liver toxicity, hospitalized with severe muscle pain (could not stand or hold my head up) and steroids administered. The good news is the liver can recover quickly and now it’s fine.It’s an aggressive plan but can be done I believe with lots of oversight.
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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- July 17, 2013 at 5:51 pm
Denise,
Thank you so much. This information is most helpful. It's been very frustrating since my mom started yervoy. Her Dr. told us that we would not be able to do anything more until 3 weeks after her last treatment (next Friday). We were told that we needed to wait until then to see if the Yervoy worked or not and then to go to the next step. I agree that once she starts all 3 treatments and if her brain tumors stabilize, we should push to get her into the anti Pd1 trial. I don't like how they are making us wait it out to see the results of other treatment first, causing a potential for additional issues.
I hope all the best for you.
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- July 17, 2013 at 5:51 pm
Denise,
Thank you so much. This information is most helpful. It's been very frustrating since my mom started yervoy. Her Dr. told us that we would not be able to do anything more until 3 weeks after her last treatment (next Friday). We were told that we needed to wait until then to see if the Yervoy worked or not and then to go to the next step. I agree that once she starts all 3 treatments and if her brain tumors stabilize, we should push to get her into the anti Pd1 trial. I don't like how they are making us wait it out to see the results of other treatment first, causing a potential for additional issues.
I hope all the best for you.
-
- July 17, 2013 at 5:51 pm
Denise,
Thank you so much. This information is most helpful. It's been very frustrating since my mom started yervoy. Her Dr. told us that we would not be able to do anything more until 3 weeks after her last treatment (next Friday). We were told that we needed to wait until then to see if the Yervoy worked or not and then to go to the next step. I agree that once she starts all 3 treatments and if her brain tumors stabilize, we should push to get her into the anti Pd1 trial. I don't like how they are making us wait it out to see the results of other treatment first, causing a potential for additional issues.
I hope all the best for you.
-
- July 16, 2013 at 6:32 pm
I did Ipi, SRS, and Zelboraf 3×3, ended up with liver toxicity, hospitalized with severe muscle pain (could not stand or hold my head up) and steroids administered. The good news is the liver can recover quickly and now it’s fine.It’s an aggressive plan but can be done I believe with lots of oversight.
-
- July 16, 2013 at 6:32 pm
I did Ipi, SRS, and Zelboraf 3×3, ended up with liver toxicity, hospitalized with severe muscle pain (could not stand or hold my head up) and steroids administered. The good news is the liver can recover quickly and now it’s fine.It’s an aggressive plan but can be done I believe with lots of oversight.
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- July 17, 2013 at 5:43 pm
Hi Donna,
Thanks for your reply. She's currently on Ipi/WBR so we're hoping that this may yeild some positive results in it self but the Dr. said that she could take the Zelboraf immediately since she just saw that she has the right gene for it. This would mean that she's doing all 3 simultaneously. I'm hoping that she will get better/feel better soon. I'll keep updating this as we continue the journey.
I wish you the best.
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- July 17, 2013 at 5:43 pm
Hi Donna,
Thanks for your reply. She's currently on Ipi/WBR so we're hoping that this may yeild some positive results in it self but the Dr. said that she could take the Zelboraf immediately since she just saw that she has the right gene for it. This would mean that she's doing all 3 simultaneously. I'm hoping that she will get better/feel better soon. I'll keep updating this as we continue the journey.
I wish you the best.
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- July 17, 2013 at 5:43 pm
Hi Donna,
Thanks for your reply. She's currently on Ipi/WBR so we're hoping that this may yeild some positive results in it self but the Dr. said that she could take the Zelboraf immediately since she just saw that she has the right gene for it. This would mean that she's doing all 3 simultaneously. I'm hoping that she will get better/feel better soon. I'll keep updating this as we continue the journey.
I wish you the best.
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