Karen M H

Every scan that shows positive results is worth celebrating.  May your dad have continued success with his treatments.

Every scan that shows positive results is worth celebrating.  May your dad have continued success with his treatments.

Every scan that shows positive results is worth celebrating.  May your dad have continued success with his treatments.

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest.  The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.

I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of  Zelboraf of 8-240 mg tabs daily?  My dose was lowered to 6 tabs daily due to an extreme body rash.  My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression.  You may ask if this is an option.  I don't know how they approach radiation following your recent surgery.  I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm.  Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.

Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf.  There hasn't been a trial that I'm aware of with both drugs being administered at the same time.  But if my MD was willing to try it I would be willing to give it a shot.  I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point.  Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan. 

I was told that another trial should be ready within the next few months,  My doc would not share with me exactly what it entailed but said I could possibly benefit from it.  So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you.  I wish you well with your treatments.  Never lose hope.  And don't be afraid to ask where you stand in this-no question is too stupid.  You and your husband are your best advocates.

Laurie from Maine, I will say a prayer for you.

Karen H

I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest.  The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.

I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of  Zelboraf of 8-240 mg tabs daily?  My dose was lowered to 6 tabs daily due to an extreme body rash.  My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression.  You may ask if this is an option.  I don't know how they approach radiation following your recent surgery.  I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm.  Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.

Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf.  There hasn't been a trial that I'm aware of with both drugs being administered at the same time.  But if my MD was willing to try it I would be willing to give it a shot.  I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point.  Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan. 

I was told that another trial should be ready within the next few months,  My doc would not share with me exactly what it entailed but said I could possibly benefit from it.  So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you.  I wish you well with your treatments.  Never lose hope.  And don't be afraid to ask where you stand in this-no question is too stupid.  You and your husband are your best advocates.

Laurie from Maine, I will say a prayer for you.

Karen H

I have been on Zelboraf since late Sept of this year. I was not ready for it prior to that due to whole brain radiation for brain mets. Started the meds the day after radiation ended for lung and lymph node tumors in my chest.  The meds are doing their job as of this last scan in Dec. Not completely gone but moving in the right direction.

I always bring an arsenal of questions with me to each appt. because I would get side-tracked while I'm there. Discussions of test results and changes in treatment plans can make anyone forget what they wanted to ask. So you believe that your MD may add Yervoy to your treatment plan this coming visit? Are you on the max dose of  Zelboraf of 8-240 mg tabs daily?  My dose was lowered to 6 tabs daily due to an extreme body rash.  My radiation onc. was considering radiation to my lung/lymph tumors to help slow the progression.  You may ask if this is an option.  I don't know how they approach radiation following your recent surgery.  I know that I did not want to have whole brain radiation, but it did prove beneficial-out of 10 small tumors, 9 are gone and the largest has shrunk to 4mm.  Since the Zelboraf is decreasing my body tumors, there is no need to utilize radiation at this time, but I would have been willing to try that option.

Every case is different, which makes it difficult to know how this will go for you. I have not been given Yervoy at this point but would be willing to try it, even while continuing Zelboraf.  There hasn't been a trial that I'm aware of with both drugs being administered at the same time.  But if my MD was willing to try it I would be willing to give it a shot.  I know melanoma is noted for being chemo and radiation resistant, but in my case, the radiation worked on my brain mets. I don't know how long this med will work on me, but it has extended my overall survival at this point.  Your MD is being proactive with ordered monthly scans so he can determine which way to go with your treatment plan. I know how disappointing it is to hear negative results following a scan. 

I was told that another trial should be ready within the next few months,  My doc would not share with me exactly what it entailed but said I could possibly benefit from it.  So keep your ear to the ground and talk to your MD about staying abreast of the latest trial options available for you.  I wish you well with your treatments.  Never lose hope.  And don't be afraid to ask where you stand in this-no question is too stupid.  You and your husband are your best advocates.

Laurie from Maine, I will say a prayer for you.

Karen H

I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.

Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.

Karen 

I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.

Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.

Karen 

I have had 3 months of Zelboraf and my CT scan of 4 weeks ago showed the lung/lymph tumors are shrinking. A new subcutaneous nodule had fully resolved and no new tumors to report. When I was first diagnosed stage IV, I had 2 brain mets-they were treated with cyberknife. During my wait and see how the brain is doing, I took Temodar for 2 months. The CT of the body showed substantial increase in all the tumors, and the brain MRI showed 10 new tumors, only 1 was larger than 1 cm, the rest were measured in mm. The Temodar did not benefit me in this instance. I was fatigued and felt like I was 90 y.o. with the joint pain, weakness, stiffness. I had WBRT for the 10 tumors and they are resolved with the larger tumor only 4mm. I have not taken the Ipi yet but will if presented.

Are you having any skin issues yet with the Zelboraf? Within 2 wks of starting the med I had a full body rash. Took a short drug holiday and after resuming at the max dose, the rash continued. The dose was reduced to 3 tabs BID. I continue to have facial skin issues. I hope you have great success with the Zelboraf.

Karen 

I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy. 

I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy. 

I would ask for the tissue sample from your lung to be checked for the BRAF mutation V600E so you could have available to you the vemurafenib that is currently being used for those of us with that mutation.  It is extending OS but is not a cure.  I probably wouldn't be writing this right now if it weren't for the drug. Of course, I also had WBRT for the brain mets.  That has also given me more time. Yervoy is also a new drug that has had good results. Both were approved early this year.  I currently have not been offered the Yervoy as part of my treatment plan.  I do expect that at some point.  But every scan determines the next direction of your treatment plan.  I hope all goes well with your biopsy.