Fever chills dabrafenib & mekinist-experiences?

Hi Sarah,

I've been on combo since July.  Yes, I've had that experience once badly, and a couple of less intense times.   I believe tylenol or advil is recommended.

I've developed pretty severe arthritis from the drug combo in my hips/knees despite painkillers.  So now I'm on a 4-day drug holiday and we'll see how I do.

I have an MRI (had 2 gamma knife procedures) on May 29, and PET/CT scan on June 16, followed by June 16th dr. appt.  SCANXIETY! 

BTW, the 1st time I had gamma knife we thought I was going into PD1 trial, so my steroid taper was fast…landed me in the hospital with seizures.  Please be sure your hubby's taper is slow!

best,

Karen

Hi Sarah,

I've been on combo since July.  Yes, I've had that experience once badly, and a couple of less intense times.   I believe tylenol or advil is recommended.

I've developed pretty severe arthritis from the drug combo in my hips/knees despite painkillers.  So now I'm on a 4-day drug holiday and we'll see how I do.

I have an MRI (had 2 gamma knife procedures) on May 29, and PET/CT scan on June 16, followed by June 16th dr. appt.  SCANXIETY! 

BTW, the 1st time I had gamma knife we thought I was going into PD1 trial, so my steroid taper was fast…landed me in the hospital with seizures.  Please be sure your hubby's taper is slow!

best,

Karen

Hi Sarah,

I've been on combo since July.  Yes, I've had that experience once badly, and a couple of less intense times.   I believe tylenol or advil is recommended.

I've developed pretty severe arthritis from the drug combo in my hips/knees despite painkillers.  So now I'm on a 4-day drug holiday and we'll see how I do.

I have an MRI (had 2 gamma knife procedures) on May 29, and PET/CT scan on June 16, followed by June 16th dr. appt.  SCANXIETY! 

BTW, the 1st time I had gamma knife we thought I was going into PD1 trial, so my steroid taper was fast…landed me in the hospital with seizures.  Please be sure your hubby's taper is slow!

best,

Karen

Hi Sarah, I've been on the combo since last August. Only had mild burning/ achy feet & legs up to 6 week mark. I then had fevers, dehydration , mouth ulcers, & shocking nerve like pain in feet & legs. I was taken off drugs for about a week & then restarted with low dose prednisone . Once prednisone finished I had relapse of symptoms – another break off drugs & then resumed  on reduced dose of  Dabrafenib – 200mg day + normal Mek dose along with prednisone being very gradually reduced (1mg per week). Since then I've been really well – back to normal exercise & living. Doc is going to gradually increase Dabrafenib dose once I'm back from a 3 week holiday. Apparently severe side effects are unlikely to recur once the first lot have been experienced. I hope your husband can soon start feeling better. Best wishes , Lyn 

Hi Sarah, I've been on the combo since last August. Only had mild burning/ achy feet & legs up to 6 week mark. I then had fevers, dehydration , mouth ulcers, & shocking nerve like pain in feet & legs. I was taken off drugs for about a week & then restarted with low dose prednisone . Once prednisone finished I had relapse of symptoms – another break off drugs & then resumed  on reduced dose of  Dabrafenib – 200mg day + normal Mek dose along with prednisone being very gradually reduced (1mg per week). Since then I've been really well – back to normal exercise & living. Doc is going to gradually increase Dabrafenib dose once I'm back from a 3 week holiday. Apparently severe side effects are unlikely to recur once the first lot have been experienced. I hope your husband can soon start feeling better. Best wishes , Lyn 

Hi Sarah, I've been on the combo since last August. Only had mild burning/ achy feet & legs up to 6 week mark. I then had fevers, dehydration , mouth ulcers, & shocking nerve like pain in feet & legs. I was taken off drugs for about a week & then restarted with low dose prednisone . Once prednisone finished I had relapse of symptoms – another break off drugs & then resumed  on reduced dose of  Dabrafenib – 200mg day + normal Mek dose along with prednisone being very gradually reduced (1mg per week). Since then I've been really well – back to normal exercise & living. Doc is going to gradually increase Dabrafenib dose once I'm back from a 3 week holiday. Apparently severe side effects are unlikely to recur once the first lot have been experienced. I hope your husband can soon start feeling better. Best wishes , Lyn 

Hi Sarah, thanks for posting this on this website. I started to take Debrafenib and Mekinist about four months ago after my melanoma had metastasized to my head. I had a racquetball sized tumor in the front right lobe of my brain that the doctors at Memorial Herman Hospital in the Houston Med Center surgically removed. In mid January 2015 I started to get the chills and fever's almost every day from the medicine.  I thought that I was coming down with the flu but nothing came up when I went to the MD Anderson Emergency room. I had about 2 weeks of freedom from that after my doctor told me to take a few days off of the medicine. Then yesterday I started to run another fever and started to get the chills. Today I've had the same thing and was running almost 103 temperature. After reading your post I realize now it's the medicine that's giving me the symptoms. All my check ups since my surgery have come back clear and there are no other cancer spots that we have been able to see in my scans. With the way I'm reacting to this medicine I feel like telling the doctors to wean me off this medicine because there's nothing there that we can see that says I have cancer and I don't like the way it makes me feel physical!  I feel very blessed that I am where I am but I'm just in a struggle as to whether I should just not take the medicine anymore. That's just something I'll have to decide. Thanks again for your post! Gave me some clarity on those drugs!

all the best, Jared

Hi Sarah, thanks for posting this on this website. I started to take Debrafenib and Mekinist about four months ago after my melanoma had metastasized to my head. I had a racquetball sized tumor in the front right lobe of my brain that the doctors at Memorial Herman Hospital in the Houston Med Center surgically removed. In mid January 2015 I started to get the chills and fever's almost every day from the medicine.  I thought that I was coming down with the flu but nothing came up when I went to the MD Anderson Emergency room. I had about 2 weeks of freedom from that after my doctor told me to take a few days off of the medicine. Then yesterday I started to run another fever and started to get the chills. Today I've had the same thing and was running almost 103 temperature. After reading your post I realize now it's the medicine that's giving me the symptoms. All my check ups since my surgery have come back clear and there are no other cancer spots that we have been able to see in my scans. With the way I'm reacting to this medicine I feel like telling the doctors to wean me off this medicine because there's nothing there that we can see that says I have cancer and I don't like the way it makes me feel physical!  I feel very blessed that I am where I am but I'm just in a struggle as to whether I should just not take the medicine anymore. That's just something I'll have to decide. Thanks again for your post! Gave me some clarity on those drugs!

all the best, Jared

Hi Sarah, thanks for posting this on this website. I started to take Debrafenib and Mekinist about four months ago after my melanoma had metastasized to my head. I had a racquetball sized tumor in the front right lobe of my brain that the doctors at Memorial Herman Hospital in the Houston Med Center surgically removed. In mid January 2015 I started to get the chills and fever's almost every day from the medicine.  I thought that I was coming down with the flu but nothing came up when I went to the MD Anderson Emergency room. I had about 2 weeks of freedom from that after my doctor told me to take a few days off of the medicine. Then yesterday I started to run another fever and started to get the chills. Today I've had the same thing and was running almost 103 temperature. After reading your post I realize now it's the medicine that's giving me the symptoms. All my check ups since my surgery have come back clear and there are no other cancer spots that we have been able to see in my scans. With the way I'm reacting to this medicine I feel like telling the doctors to wean me off this medicine because there's nothing there that we can see that says I have cancer and I don't like the way it makes me feel physical!  I feel very blessed that I am where I am but I'm just in a struggle as to whether I should just not take the medicine anymore. That's just something I'll have to decide. Thanks again for your post! Gave me some clarity on those drugs!

all the best, Jared

Hello Sarah,

Have been on this combo for about 12 months. After 2 months severe fevers forced me to quit Dabrafenib for a week. Within 3 days (the usual wash-out time) temperatures where back to normal.

For the rest of hat year I took 1000mg paracetamol 1hour before the morning and evening dose of Dabrafenib and another 1000mg in the afternoon. In spite of the paracetamol I had to quit twice for 3 days during the last month of the inhibitor therapy.

In my case there where no dosage adjustments considered and I could very well live with the idea to keep the chemical pressure as high as possible in order to keep maximum tumorcontrol.

From what I've read about it dosage adjusment will work. Even adjusting the schedule (one day on, one day off) is a way to avoid unbearable side effects. See: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35295

Good luck,

Ben

Hello Sarah,

Have been on this combo for about 12 months. After 2 months severe fevers forced me to quit Dabrafenib for a week. Within 3 days (the usual wash-out time) temperatures where back to normal.

For the rest of hat year I took 1000mg paracetamol 1hour before the morning and evening dose of Dabrafenib and another 1000mg in the afternoon. In spite of the paracetamol I had to quit twice for 3 days during the last month of the inhibitor therapy.

In my case there where no dosage adjustments considered and I could very well live with the idea to keep the chemical pressure as high as possible in order to keep maximum tumorcontrol.

From what I've read about it dosage adjusment will work. Even adjusting the schedule (one day on, one day off) is a way to avoid unbearable side effects. See: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35295

Good luck,

Ben

Hello Sarah,

Have been on this combo for about 12 months. After 2 months severe fevers forced me to quit Dabrafenib for a week. Within 3 days (the usual wash-out time) temperatures where back to normal.

For the rest of hat year I took 1000mg paracetamol 1hour before the morning and evening dose of Dabrafenib and another 1000mg in the afternoon. In spite of the paracetamol I had to quit twice for 3 days during the last month of the inhibitor therapy.

In my case there where no dosage adjustments considered and I could very well live with the idea to keep the chemical pressure as high as possible in order to keep maximum tumorcontrol.

From what I've read about it dosage adjusment will work. Even adjusting the schedule (one day on, one day off) is a way to avoid unbearable side effects. See: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35295

Good luck,

Ben