Tafinlar Mekinist and an oncology nightmare

I think you have to have thick skin. If you think something is wrong then call i do anyway. Thats why they get paid the big bucks. My husband had a fever when i called the first time the nurse said don’t you know that can be a side affect. I said its 103 and i cant get it to break. She said she would talk to the doc and call me back this was at 2pm at 8pm still no call i called back got a dr that was on call. She said he needs to needs to be here. Why did the nurse act like i was over reacting when the other said get here. They kept him for 3 days and had to put him on new meds to keep it down. Hes been in bed since. My point is you know him best your with him all the time and know when things arent right. I read alot online but i dont know as much as the doc. And if i get on there nerves or they treat me as im dumb thats ok as long as my minds at peace. My thoughts anyways. Good luck to yall.

I think you have to have thick skin. If you think something is wrong then call i do anyway. Thats why they get paid the big bucks. My husband had a fever when i called the first time the nurse said don’t you know that can be a side affect. I said its 103 and i cant get it to break. She said she would talk to the doc and call me back this was at 2pm at 8pm still no call i called back got a dr that was on call. She said he needs to needs to be here. Why did the nurse act like i was over reacting when the other said get here. They kept him for 3 days and had to put him on new meds to keep it down. Hes been in bed since. My point is you know him best your with him all the time and know when things arent right. I read alot online but i dont know as much as the doc. And if i get on there nerves or they treat me as im dumb thats ok as long as my minds at peace. My thoughts anyways. Good luck to yall.

I think you have to have thick skin. If you think something is wrong then call i do anyway. Thats why they get paid the big bucks. My husband had a fever when i called the first time the nurse said don’t you know that can be a side affect. I said its 103 and i cant get it to break. She said she would talk to the doc and call me back this was at 2pm at 8pm still no call i called back got a dr that was on call. She said he needs to needs to be here. Why did the nurse act like i was over reacting when the other said get here. They kept him for 3 days and had to put him on new meds to keep it down. Hes been in bed since. My point is you know him best your with him all the time and know when things arent right. I read alot online but i dont know as much as the doc. And if i get on there nerves or they treat me as im dumb thats ok as long as my minds at peace. My thoughts anyways. Good luck to yall.

Sorry you and your husband are dealing with this.  I agree with Marrianne…if you are worried….demand answers and if really worried…go to the ER until you get them.  The drugs your husband is taking come with significant side effects for many.  These can often be dealt with via a small break from meds followed by a reduced dose or an every-other-day type dosing pattern.

Here are the side effects articles site as common with BRAF/MEK combo's:  The most common (at least 20% incidence) side effects experienced with the combination were:  fever, chills, fatigue, rash, nausea, vomiting, diarrhea, abdominal pain, peripheral edema, cough, headache, arthralgia, night sweats, decreased appetite, constipation, and myalgia.  The most frequent complicated adverse events (with at least a 5% incidence) were:  acute renal failure, fever, hemorrhage, and back pain.

Here is an article specifically addressing fever:  Features and management of pyrexia with combined dabrafenib and trametinib in metastatic melanoma.
Lee, Menzies, Haydu, et al.  Melanoma Res. 2014 July 22.

CombiDT (dabrafenib and trametinib) is an effective treatment for BRAF-mutant metastatic melanoma.  However, over 70% of patients develop drug-related pyrexia [fever].  32 patients reviewed.  14 (44%) developed pyrexia.  Fever was recurrent in 11/14.  Pyrexia was not associated with age, sex, disease burden, RECIST response, progression-free, nor overall survival.  Paracetamol, NSAIDs and/or dose reduction were ineffective secondary prophylaxis for pyrexia, whereas corticosteroids were effective in all patients.  In patients with previous dose reductions who commenced steroids, CombiDT doses were re-escalated without pyrexia.

There is much more info about BRAF/MEK combo's on my blog (use the bubble to search) if you are interested. 

However, the hard part is that while the fatigue, fever and chills your husband is experiencing could well be from the drugs he is taking….they could be caused by other things as well.  Either way….he needs to be treated….for side effects…..or for whatever is causing the symptoms.

Not sure if that helps much…but I figure knowledge is power. Hang in there.  Celeste

Sorry you and your husband are dealing with this.  I agree with Marrianne…if you are worried….demand answers and if really worried…go to the ER until you get them.  The drugs your husband is taking come with significant side effects for many.  These can often be dealt with via a small break from meds followed by a reduced dose or an every-other-day type dosing pattern.

Here are the side effects articles site as common with BRAF/MEK combo's:  The most common (at least 20% incidence) side effects experienced with the combination were:  fever, chills, fatigue, rash, nausea, vomiting, diarrhea, abdominal pain, peripheral edema, cough, headache, arthralgia, night sweats, decreased appetite, constipation, and myalgia.  The most frequent complicated adverse events (with at least a 5% incidence) were:  acute renal failure, fever, hemorrhage, and back pain.

Here is an article specifically addressing fever:  Features and management of pyrexia with combined dabrafenib and trametinib in metastatic melanoma.
Lee, Menzies, Haydu, et al.  Melanoma Res. 2014 July 22.

CombiDT (dabrafenib and trametinib) is an effective treatment for BRAF-mutant metastatic melanoma.  However, over 70% of patients develop drug-related pyrexia [fever].  32 patients reviewed.  14 (44%) developed pyrexia.  Fever was recurrent in 11/14.  Pyrexia was not associated with age, sex, disease burden, RECIST response, progression-free, nor overall survival.  Paracetamol, NSAIDs and/or dose reduction were ineffective secondary prophylaxis for pyrexia, whereas corticosteroids were effective in all patients.  In patients with previous dose reductions who commenced steroids, CombiDT doses were re-escalated without pyrexia.

There is much more info about BRAF/MEK combo's on my blog (use the bubble to search) if you are interested. 

However, the hard part is that while the fatigue, fever and chills your husband is experiencing could well be from the drugs he is taking….they could be caused by other things as well.  Either way….he needs to be treated….for side effects…..or for whatever is causing the symptoms.

Not sure if that helps much…but I figure knowledge is power. Hang in there.  Celeste

Sorry you and your husband are dealing with this.  I agree with Marrianne…if you are worried….demand answers and if really worried…go to the ER until you get them.  The drugs your husband is taking come with significant side effects for many.  These can often be dealt with via a small break from meds followed by a reduced dose or an every-other-day type dosing pattern.

Here are the side effects articles site as common with BRAF/MEK combo's:  The most common (at least 20% incidence) side effects experienced with the combination were:  fever, chills, fatigue, rash, nausea, vomiting, diarrhea, abdominal pain, peripheral edema, cough, headache, arthralgia, night sweats, decreased appetite, constipation, and myalgia.  The most frequent complicated adverse events (with at least a 5% incidence) were:  acute renal failure, fever, hemorrhage, and back pain.

Here is an article specifically addressing fever:  Features and management of pyrexia with combined dabrafenib and trametinib in metastatic melanoma.
Lee, Menzies, Haydu, et al.  Melanoma Res. 2014 July 22.

CombiDT (dabrafenib and trametinib) is an effective treatment for BRAF-mutant metastatic melanoma.  However, over 70% of patients develop drug-related pyrexia [fever].  32 patients reviewed.  14 (44%) developed pyrexia.  Fever was recurrent in 11/14.  Pyrexia was not associated with age, sex, disease burden, RECIST response, progression-free, nor overall survival.  Paracetamol, NSAIDs and/or dose reduction were ineffective secondary prophylaxis for pyrexia, whereas corticosteroids were effective in all patients.  In patients with previous dose reductions who commenced steroids, CombiDT doses were re-escalated without pyrexia.

There is much more info about BRAF/MEK combo's on my blog (use the bubble to search) if you are interested. 

However, the hard part is that while the fatigue, fever and chills your husband is experiencing could well be from the drugs he is taking….they could be caused by other things as well.  Either way….he needs to be treated….for side effects…..or for whatever is causing the symptoms.

Not sure if that helps much…but I figure knowledge is power. Hang in there.  Celeste

I was on the Taf/Mek combo a couple months. This is a highly specialized medicine and hopefully the doc prescribing it knows what they are doing. I would think the prescribing doc should be responsible for the care but what do I know.

Anyway fevers are very common. I had a 103 and didn't even know it because I felt ok. Of course those fevers need to be gotten down.

I didn't have fatigue with this med but I did for zelboraf. I would sit in my recliner for hours and just not be able to move. I would try to cross the room to the bathroom and it would just be one small step at a time with the wall to support me to keep me from falling. Not easy. So yes I can see these meds causing fatigue.

Now what can be done is what they call a med holiday. If your doc isn't familiar with these meds they probably don't know about it. My doc knew and it was amazing. Basically it's taking about 2 to 3 days without the medicine. I was totally suprised what a difference it made and going back on it was easier. You might want to ask your doc about it.

Artie

I was on the Taf/Mek combo a couple months. This is a highly specialized medicine and hopefully the doc prescribing it knows what they are doing. I would think the prescribing doc should be responsible for the care but what do I know.

Anyway fevers are very common. I had a 103 and didn't even know it because I felt ok. Of course those fevers need to be gotten down.

I didn't have fatigue with this med but I did for zelboraf. I would sit in my recliner for hours and just not be able to move. I would try to cross the room to the bathroom and it would just be one small step at a time with the wall to support me to keep me from falling. Not easy. So yes I can see these meds causing fatigue.

Now what can be done is what they call a med holiday. If your doc isn't familiar with these meds they probably don't know about it. My doc knew and it was amazing. Basically it's taking about 2 to 3 days without the medicine. I was totally suprised what a difference it made and going back on it was easier. You might want to ask your doc about it.

Artie

I was on the Taf/Mek combo a couple months. This is a highly specialized medicine and hopefully the doc prescribing it knows what they are doing. I would think the prescribing doc should be responsible for the care but what do I know.

Anyway fevers are very common. I had a 103 and didn't even know it because I felt ok. Of course those fevers need to be gotten down.

I didn't have fatigue with this med but I did for zelboraf. I would sit in my recliner for hours and just not be able to move. I would try to cross the room to the bathroom and it would just be one small step at a time with the wall to support me to keep me from falling. Not easy. So yes I can see these meds causing fatigue.

Now what can be done is what they call a med holiday. If your doc isn't familiar with these meds they probably don't know about it. My doc knew and it was amazing. Basically it's taking about 2 to 3 days without the medicine. I was totally suprised what a difference it made and going back on it was easier. You might want to ask your doc about it.

Artie

Frank Two, I've been on the combo for more than a year.  Thankfully, no material side effects.  I've also had ipi and did have what I considered to be fatigue.  At no point was the fatigue so bad that I couldn't walk up a flight of stairs.  That sounds like extreme fatigue and I've not seen others report that kind of fatigue from the combo.  I agree with your reaction that you need to speak directly with the onc.

Frank Two, I've been on the combo for more than a year.  Thankfully, no material side effects.  I've also had ipi and did have what I considered to be fatigue.  At no point was the fatigue so bad that I couldn't walk up a flight of stairs.  That sounds like extreme fatigue and I've not seen others report that kind of fatigue from the combo.  I agree with your reaction that you need to speak directly with the onc.

Frank Two, I've been on the combo for more than a year.  Thankfully, no material side effects.  I've also had ipi and did have what I considered to be fatigue.  At no point was the fatigue so bad that I couldn't walk up a flight of stairs.  That sounds like extreme fatigue and I've not seen others report that kind of fatigue from the combo.  I agree with your reaction that you need to speak directly with the onc.

Hello Frank,

I've been on MEK combo for about eight months. Have had several bouts of fevers/chills (none recently). One time I went to the ER and was given fluids–they mostly check for what is causing the fever, to make sure that it's not caused by an infection. I try to stay well-hydrated, and when I'm feeling light-headed or fatigued often drinking a sports drink, like Gatorade, will relieve it somewhat. Often the RN is more up-to-date than the oncologist about side-effects–especially in places where there have not yet been many MEK patients. If the difficulty climbing the stairs was the result of fatigue, that sounds unusual–if it's because of the severe foot soreness that comes seemingly randomly, it's totally normal and will likely pass. Hang in there.

Paul

Hello Frank,

I've been on MEK combo for about eight months. Have had several bouts of fevers/chills (none recently). One time I went to the ER and was given fluids–they mostly check for what is causing the fever, to make sure that it's not caused by an infection. I try to stay well-hydrated, and when I'm feeling light-headed or fatigued often drinking a sports drink, like Gatorade, will relieve it somewhat. Often the RN is more up-to-date than the oncologist about side-effects–especially in places where there have not yet been many MEK patients. If the difficulty climbing the stairs was the result of fatigue, that sounds unusual–if it's because of the severe foot soreness that comes seemingly randomly, it's totally normal and will likely pass. Hang in there.

Paul

Hello Frank,

I've been on MEK combo for about eight months. Have had several bouts of fevers/chills (none recently). One time I went to the ER and was given fluids–they mostly check for what is causing the fever, to make sure that it's not caused by an infection. I try to stay well-hydrated, and when I'm feeling light-headed or fatigued often drinking a sports drink, like Gatorade, will relieve it somewhat. Often the RN is more up-to-date than the oncologist about side-effects–especially in places where there have not yet been many MEK patients. If the difficulty climbing the stairs was the result of fatigue, that sounds unusual–if it's because of the severe foot soreness that comes seemingly randomly, it's totally normal and will likely pass. Hang in there.

Paul

Fist off, I can’t believe they said to see your pcp! Your onc should definitely be handling any side effects and complications. I would definitely have a talk with your onc about this and make sure they are on board.

I’m not on this drug, but I do have some insight on the fevers. I get insanse fevers with my treatment – interferon (105 on many occasions, 103 – 102 occurs at least weekly, and I have at least some form of fever 3 days a week…. even after dose reductions).

So my fever “tips” based on Dr instructions and my exexperience for nights I know are going to be really bad (104 – 105)… 1. Drink a TON of water before, during, and after fever. 2. Take 2 regular strength Tylenol every 6 hours, and 2 to 3 ibproffin every 6 hours, alternating (so you are taking something every 3 hours) until fever breaks. I know it seems like a lot, but having a high fever isn’t safe either, you need to get it to break! 3. I take an oxicoton (low dose) when I take my shot to reduce pain. 4. If fever gets to 105, no blankets, ice packs on head, air conditioner blasting on me ( I have a unit right next to my bed). …. if I can’t get 105 fever to break within an hour with these tricks, it’s hospital time.

On a more regular basis, when i expect a fever of 102 – 103 or below, I usually just do 1 or 2 doses of advil, lots of water, and just tough it out bc the fever usually doesn’t last more than 12 hours.

I’m not a Dr, and we are on different treatments, so please consult with your onc before just taking my advice. I just really empathize with high fevers and fatigue, and this is what has worked best for me after many nights of trial and error while in agony. Hopefully you can tailor my “tips” to your situation. Good luck with everything! I’m off to a lovely night of fever myself.

Fist off, I can’t believe they said to see your pcp! Your onc should definitely be handling any side effects and complications. I would definitely have a talk with your onc about this and make sure they are on board.

I’m not on this drug, but I do have some insight on the fevers. I get insanse fevers with my treatment – interferon (105 on many occasions, 103 – 102 occurs at least weekly, and I have at least some form of fever 3 days a week…. even after dose reductions).

So my fever “tips” based on Dr instructions and my exexperience for nights I know are going to be really bad (104 – 105)… 1. Drink a TON of water before, during, and after fever. 2. Take 2 regular strength Tylenol every 6 hours, and 2 to 3 ibproffin every 6 hours, alternating (so you are taking something every 3 hours) until fever breaks. I know it seems like a lot, but having a high fever isn’t safe either, you need to get it to break! 3. I take an oxicoton (low dose) when I take my shot to reduce pain. 4. If fever gets to 105, no blankets, ice packs on head, air conditioner blasting on me ( I have a unit right next to my bed). …. if I can’t get 105 fever to break within an hour with these tricks, it’s hospital time.

On a more regular basis, when i expect a fever of 102 – 103 or below, I usually just do 1 or 2 doses of advil, lots of water, and just tough it out bc the fever usually doesn’t last more than 12 hours.

I’m not a Dr, and we are on different treatments, so please consult with your onc before just taking my advice. I just really empathize with high fevers and fatigue, and this is what has worked best for me after many nights of trial and error while in agony. Hopefully you can tailor my “tips” to your situation. Good luck with everything! I’m off to a lovely night of fever myself.

Fist off, I can’t believe they said to see your pcp! Your onc should definitely be handling any side effects and complications. I would definitely have a talk with your onc about this and make sure they are on board.

I’m not on this drug, but I do have some insight on the fevers. I get insanse fevers with my treatment – interferon (105 on many occasions, 103 – 102 occurs at least weekly, and I have at least some form of fever 3 days a week…. even after dose reductions).

So my fever “tips” based on Dr instructions and my exexperience for nights I know are going to be really bad (104 – 105)… 1. Drink a TON of water before, during, and after fever. 2. Take 2 regular strength Tylenol every 6 hours, and 2 to 3 ibproffin every 6 hours, alternating (so you are taking something every 3 hours) until fever breaks. I know it seems like a lot, but having a high fever isn’t safe either, you need to get it to break! 3. I take an oxicoton (low dose) when I take my shot to reduce pain. 4. If fever gets to 105, no blankets, ice packs on head, air conditioner blasting on me ( I have a unit right next to my bed). …. if I can’t get 105 fever to break within an hour with these tricks, it’s hospital time.

On a more regular basis, when i expect a fever of 102 – 103 or below, I usually just do 1 or 2 doses of advil, lots of water, and just tough it out bc the fever usually doesn’t last more than 12 hours.

I’m not a Dr, and we are on different treatments, so please consult with your onc before just taking my advice. I just really empathize with high fevers and fatigue, and this is what has worked best for me after many nights of trial and error while in agony. Hopefully you can tailor my “tips” to your situation. Good luck with everything! I’m off to a lovely night of fever myself.