› Forums › General Melanoma Community › failed braf/mek combo
- This topic has 24 replies, 5 voices, and was last updated 9 years, 7 months ago by
AnnaW.
- Post
-
- July 17, 2014 at 5:39 am
Just to update on my husband, he has been on the combo since Feb & based on the scans from yesterday, our local monitoring oncologist said the combo is no longer working for him, and told him to him to stop taking the combo. He is now unable to move from the waist down. I tried to get an appointment to see his UCLA oncologist tomorrow or as soon as possible, but was told my husband would have to wait til next Monday. So hard for me to wait and see him suffer til Monday without any answers.
- Replies
-
-
- July 17, 2014 at 2:41 pm
New to this forum, sorry to hear that the combo has failed.
Stage 4 melanoma since April/2013. Taking combo currently and also just took first dose of ipilumumab yesterday. Thank you for the info, I took Vemurafenib for about 6 months before it stopped working for me. Stay strong while we keep fighting.
-
- July 17, 2014 at 2:41 pm
New to this forum, sorry to hear that the combo has failed.
Stage 4 melanoma since April/2013. Taking combo currently and also just took first dose of ipilumumab yesterday. Thank you for the info, I took Vemurafenib for about 6 months before it stopped working for me. Stay strong while we keep fighting.
-
- July 17, 2014 at 2:41 pm
New to this forum, sorry to hear that the combo has failed.
Stage 4 melanoma since April/2013. Taking combo currently and also just took first dose of ipilumumab yesterday. Thank you for the info, I took Vemurafenib for about 6 months before it stopped working for me. Stay strong while we keep fighting.
-
- July 17, 2014 at 3:07 pm
Wow. This is a crazy disease. Before I was first diagnosed last year on a Monday I was at work and walked a mile. The following Saturday I could hardly walk and they had to use a wheel chair to get me to the MRI room. There is hope though. I'm an example of it. Your husband can be too. I now walk 2 miles a day fine. I still have tons of tumors but stay strong and fight and hope and we can beat this.
As far as your local doctor not thinking it is xgeva may be right. I dunno. Hopefully your UCLA doctor will know. In my opinion and experience of having almost been paralyzed by this disease a MRI of the spine was the key to the docs finding the exact tumor that was pressing on my spinal cord. At that time they said I was a "hairs breath from being paralyzed". Also they said one wrong twist, turn, lift and I would be paralyzed. Also they said anyone who had that much spinal cord damage at once instead of slowly by tumor growth would already be paralyzed. I have no idea if your husband's issue is the same as mine was. But like I said there is hope he will get through this issue fine because I'm an example of it. Stereostatic radiation directly to that tumor is what helped me eventhough they had already radiated that area once before. Surgery was the first option but due to not being able to shut off an artery that was cancelled.
Here are some links to the 3 meds but I don't see anything that could cause this issue but maybe I missed something. Best of luck and prayers to you and your husband.
http://chemocare.com/chemotherapy/drug-info/Xgeva.aspx#.U8fhAUBsq6Q
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
Artie
-
- July 17, 2014 at 7:26 pm
Thanks so much Artie. I showed your reply to my husband, it gave him hope. I just called & left a message with his radiation oncologist. Who is by the way a wondeeful & caring doctor, hopefully he would be able to help. -
- July 17, 2014 at 7:26 pm
Thanks so much Artie. I showed your reply to my husband, it gave him hope. I just called & left a message with his radiation oncologist. Who is by the way a wondeeful & caring doctor, hopefully he would be able to help. -
- July 17, 2014 at 7:26 pm
Thanks so much Artie. I showed your reply to my husband, it gave him hope. I just called & left a message with his radiation oncologist. Who is by the way a wondeeful & caring doctor, hopefully he would be able to help.
-
- July 17, 2014 at 3:07 pm
Wow. This is a crazy disease. Before I was first diagnosed last year on a Monday I was at work and walked a mile. The following Saturday I could hardly walk and they had to use a wheel chair to get me to the MRI room. There is hope though. I'm an example of it. Your husband can be too. I now walk 2 miles a day fine. I still have tons of tumors but stay strong and fight and hope and we can beat this.
As far as your local doctor not thinking it is xgeva may be right. I dunno. Hopefully your UCLA doctor will know. In my opinion and experience of having almost been paralyzed by this disease a MRI of the spine was the key to the docs finding the exact tumor that was pressing on my spinal cord. At that time they said I was a "hairs breath from being paralyzed". Also they said one wrong twist, turn, lift and I would be paralyzed. Also they said anyone who had that much spinal cord damage at once instead of slowly by tumor growth would already be paralyzed. I have no idea if your husband's issue is the same as mine was. But like I said there is hope he will get through this issue fine because I'm an example of it. Stereostatic radiation directly to that tumor is what helped me eventhough they had already radiated that area once before. Surgery was the first option but due to not being able to shut off an artery that was cancelled.
Here are some links to the 3 meds but I don't see anything that could cause this issue but maybe I missed something. Best of luck and prayers to you and your husband.
http://chemocare.com/chemotherapy/drug-info/Xgeva.aspx#.U8fhAUBsq6Q
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
Artie
-
- July 17, 2014 at 3:07 pm
Wow. This is a crazy disease. Before I was first diagnosed last year on a Monday I was at work and walked a mile. The following Saturday I could hardly walk and they had to use a wheel chair to get me to the MRI room. There is hope though. I'm an example of it. Your husband can be too. I now walk 2 miles a day fine. I still have tons of tumors but stay strong and fight and hope and we can beat this.
As far as your local doctor not thinking it is xgeva may be right. I dunno. Hopefully your UCLA doctor will know. In my opinion and experience of having almost been paralyzed by this disease a MRI of the spine was the key to the docs finding the exact tumor that was pressing on my spinal cord. At that time they said I was a "hairs breath from being paralyzed". Also they said one wrong twist, turn, lift and I would be paralyzed. Also they said anyone who had that much spinal cord damage at once instead of slowly by tumor growth would already be paralyzed. I have no idea if your husband's issue is the same as mine was. But like I said there is hope he will get through this issue fine because I'm an example of it. Stereostatic radiation directly to that tumor is what helped me eventhough they had already radiated that area once before. Surgery was the first option but due to not being able to shut off an artery that was cancelled.
Here are some links to the 3 meds but I don't see anything that could cause this issue but maybe I missed something. Best of luck and prayers to you and your husband.
http://chemocare.com/chemotherapy/drug-info/Xgeva.aspx#.U8fhAUBsq6Q
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
http://www.rxlist.com/mekinist-side-effects-drug-center.htm
Artie
-
- July 17, 2014 at 3:18 pm
Sorry to hear about your husband. Is it possible that you got the "wrong" person on the phone at UCLA? In other words, if just an "appointment taker", that person may not appreciate the situation. Can you call the oncology nurse? I empathize with your situation. I actually left my original melanoma specialist because of a similar circumstance at the time of my Stage IV diagnosis ("yes, sorry about your scans, the doctor can see you in a week" or something like that).
-
- July 17, 2014 at 3:18 pm
Sorry to hear about your husband. Is it possible that you got the "wrong" person on the phone at UCLA? In other words, if just an "appointment taker", that person may not appreciate the situation. Can you call the oncology nurse? I empathize with your situation. I actually left my original melanoma specialist because of a similar circumstance at the time of my Stage IV diagnosis ("yes, sorry about your scans, the doctor can see you in a week" or something like that).
-
- July 17, 2014 at 3:18 pm
Sorry to hear about your husband. Is it possible that you got the "wrong" person on the phone at UCLA? In other words, if just an "appointment taker", that person may not appreciate the situation. Can you call the oncology nurse? I empathize with your situation. I actually left my original melanoma specialist because of a similar circumstance at the time of my Stage IV diagnosis ("yes, sorry about your scans, the doctor can see you in a week" or something like that).
-
- July 17, 2014 at 7:21 pm
Left message at his office to please call me due to the situation. He never called. I emailed him and got a reply back to call & schedule an appt for Monday. Monday will be almost one week without taking the combo, being paralyzed from the waist down without any words from the doctor. -
- July 17, 2014 at 7:21 pm
Left message at his office to please call me due to the situation. He never called. I emailed him and got a reply back to call & schedule an appt for Monday. Monday will be almost one week without taking the combo, being paralyzed from the waist down without any words from the doctor. -
- July 17, 2014 at 7:21 pm
Left message at his office to please call me due to the situation. He never called. I emailed him and got a reply back to call & schedule an appt for Monday. Monday will be almost one week without taking the combo, being paralyzed from the waist down without any words from the doctor. -
- September 9, 2014 at 1:41 am
I see you haven't posted in awhile? How is your husband doing?
My sister-in-law in going through almost the same situation. Severe bone mat and severe related pain. The doctors just keep upping the pain med strengths.
Its killing her husband (my brother) to watch her go through this. He feels like the doctors are not doing everything they can for the pain. A trip to the ER just finds them back home with "try this, or try that".
-
- September 9, 2014 at 1:41 am
I see you haven't posted in awhile? How is your husband doing?
My sister-in-law in going through almost the same situation. Severe bone mat and severe related pain. The doctors just keep upping the pain med strengths.
Its killing her husband (my brother) to watch her go through this. He feels like the doctors are not doing everything they can for the pain. A trip to the ER just finds them back home with "try this, or try that".
-
- September 9, 2014 at 1:41 am
I see you haven't posted in awhile? How is your husband doing?
My sister-in-law in going through almost the same situation. Severe bone mat and severe related pain. The doctors just keep upping the pain med strengths.
Its killing her husband (my brother) to watch her go through this. He feels like the doctors are not doing everything they can for the pain. A trip to the ER just finds them back home with "try this, or try that".
-
- You must be logged in to reply to this topic.