advice and information needed….starting Tafinlar+Mekinist

I was on that combo 10 weeks or so. Everyone is different. The common thing seems to be sunlight. I did the special clothing stuff for it. Most people can burn easy and some get the skin cancers due to sun on it. Also  mekenist usually causes fevers. That's probably a reason they have another mek in trials that doesn't cause fevers. Make sure to follow the docs when to take them each day. Seemed to work ok for me as far as side affects. Mostly just fevers until week 8 for me. Good luck.

Artie

I was on that combo 10 weeks or so. Everyone is different. The common thing seems to be sunlight. I did the special clothing stuff for it. Most people can burn easy and some get the skin cancers due to sun on it. Also  mekenist usually causes fevers. That's probably a reason they have another mek in trials that doesn't cause fevers. Make sure to follow the docs when to take them each day. Seemed to work ok for me as far as side affects. Mostly just fevers until week 8 for me. Good luck.

Artie

I was on that combo 10 weeks or so. Everyone is different. The common thing seems to be sunlight. I did the special clothing stuff for it. Most people can burn easy and some get the skin cancers due to sun on it. Also  mekenist usually causes fevers. That's probably a reason they have another mek in trials that doesn't cause fevers. Make sure to follow the docs when to take them each day. Seemed to work ok for me as far as side affects. Mostly just fevers until week 8 for me. Good luck.

Artie

I was on the Taf/Mek combo from Aug 2014 til Feb 2015. During the first week of taking the meds, I started getting chills and slight fever, and mostly flue like symptoms. Then I started getting a few breakouts on my face but nothing excessive. The real problem was in December, when I started to develop mouth sores that would not heal. I had one on the tip of my tongue that was very painful and would not go away, but kept getting larger. Then these sores started to grow inside my whole mouth and the back of my throat. The doctor stopped the treatment and had me start Keytruda. Now I have developed hypothyroidism so my treatments have been suspended, until I get the thyroid balanced with meds. Never a dull moment in the world of melanoma! 

I was on the Taf/Mek combo from Aug 2014 til Feb 2015. During the first week of taking the meds, I started getting chills and slight fever, and mostly flue like symptoms. Then I started getting a few breakouts on my face but nothing excessive. The real problem was in December, when I started to develop mouth sores that would not heal. I had one on the tip of my tongue that was very painful and would not go away, but kept getting larger. Then these sores started to grow inside my whole mouth and the back of my throat. The doctor stopped the treatment and had me start Keytruda. Now I have developed hypothyroidism so my treatments have been suspended, until I get the thyroid balanced with meds. Never a dull moment in the world of melanoma! 

I was on the Taf/Mek combo from Aug 2014 til Feb 2015. During the first week of taking the meds, I started getting chills and slight fever, and mostly flue like symptoms. Then I started getting a few breakouts on my face but nothing excessive. The real problem was in December, when I started to develop mouth sores that would not heal. I had one on the tip of my tongue that was very painful and would not go away, but kept getting larger. Then these sores started to grow inside my whole mouth and the back of my throat. The doctor stopped the treatment and had me start Keytruda. Now I have developed hypothyroidism so my treatments have been suspended, until I get the thyroid balanced with meds. Never a dull moment in the world of melanoma! 

For me the combo has been huge.  After getting diagnosed last September and then having Yervoy the cancer was spreadying by this Febuary.  I was in increasing pain and spitting up blood.  

Started March 18 and in 3 days stopped spitting up blood and then over a week or two the pain went down.

I saw the results of my first PET scan since I started taking the combo this morning and the results were amazing.  Every single tumor and area has decreased.  Several very large cancerous areas are gone.  It's by far the best news I've recieved since all this started.

I've had no side effects and no spots on my skin, which you need to be on the lookout for.  Literally, the only thing I notice is that my stomache is a little upset after I take all three three pills in the morning, but it doesn't get upset when I take the 2 Tafinlar alone at night.

I just hope this continues and it works as well for you or anyone else.

For me the combo has been huge.  After getting diagnosed last September and then having Yervoy the cancer was spreadying by this Febuary.  I was in increasing pain and spitting up blood.  

Started March 18 and in 3 days stopped spitting up blood and then over a week or two the pain went down.

I saw the results of my first PET scan since I started taking the combo this morning and the results were amazing.  Every single tumor and area has decreased.  Several very large cancerous areas are gone.  It's by far the best news I've recieved since all this started.

I've had no side effects and no spots on my skin, which you need to be on the lookout for.  Literally, the only thing I notice is that my stomache is a little upset after I take all three three pills in the morning, but it doesn't get upset when I take the 2 Tafinlar alone at night.

I just hope this continues and it works as well for you or anyone else.

For me the combo has been huge.  After getting diagnosed last September and then having Yervoy the cancer was spreadying by this Febuary.  I was in increasing pain and spitting up blood.  

Started March 18 and in 3 days stopped spitting up blood and then over a week or two the pain went down.

I saw the results of my first PET scan since I started taking the combo this morning and the results were amazing.  Every single tumor and area has decreased.  Several very large cancerous areas are gone.  It's by far the best news I've recieved since all this started.

I've had no side effects and no spots on my skin, which you need to be on the lookout for.  Literally, the only thing I notice is that my stomache is a little upset after I take all three three pills in the morning, but it doesn't get upset when I take the 2 Tafinlar alone at night.

I just hope this continues and it works as well for you or anyone else.

There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

There is tremendous hope for this combo, and results get better as time goes on. Search for the article on braf/mek (not tafinlar and mekinist, which I am on, and you are starting, but similar drugs and results) from the asco 2015 conference. 2 year overall survival 51%. My oncologist says the curve flattens out at around 30%, which is excellent in the melanoma world. I have been on since Feb 2014.

Regarding side effects, it was a little rocky to start, with chills, but once my oncologist determined my personal proper dosage, which was every other day, not every day, I have been fine, with NO side effects. Just a 2 week period over New Years when I went off for 2 weeks due to sore feet.

Keep your spirits up and hope you are on the path to join the 30% who have long term success with this combo.

Hi Nell, I am just wondering if your oncologist talked to you about getting access to either of the Pd-1 drugs?  Wishing you the best!!! Ed

Hi Nell, I am just wondering if your oncologist talked to you about getting access to either of the Pd-1 drugs?  Wishing you the best!!! Ed

Hi Nell, I am just wondering if your oncologist talked to you about getting access to either of the Pd-1 drugs?  Wishing you the best!!! Ed

My husband was diagnosed with stage IV BRAF melanoma about a month ago.  He started the Tafinlar, Mekinist combo two weeks ago.  So far he is feeling much better and has more energy than he has had in a long time.  The only side effects we have noticed so far is the low grade fever about 99.2 on average, a dry cough and some sensitivity to smell. No sores or anything else to report at this time.  I pray for a cure for everyone, but in the mean time hope and faith get us through.  I have been keeping my eye on the TIL imunotherapy developed in Israel.  Sounds like hope is definitely in our future.  Good luck and prayers!  Keep posting!

My husband was diagnosed with stage IV BRAF melanoma about a month ago.  He started the Tafinlar, Mekinist combo two weeks ago.  So far he is feeling much better and has more energy than he has had in a long time.  The only side effects we have noticed so far is the low grade fever about 99.2 on average, a dry cough and some sensitivity to smell. No sores or anything else to report at this time.  I pray for a cure for everyone, but in the mean time hope and faith get us through.  I have been keeping my eye on the TIL imunotherapy developed in Israel.  Sounds like hope is definitely in our future.  Good luck and prayers!  Keep posting!

My husband was diagnosed with stage IV BRAF melanoma about a month ago.  He started the Tafinlar, Mekinist combo two weeks ago.  So far he is feeling much better and has more energy than he has had in a long time.  The only side effects we have noticed so far is the low grade fever about 99.2 on average, a dry cough and some sensitivity to smell. No sores or anything else to report at this time.  I pray for a cure for everyone, but in the mean time hope and faith get us through.  I have been keeping my eye on the TIL imunotherapy developed in Israel.  Sounds like hope is definitely in our future.  Good luck and prayers!  Keep posting!

I started the dabrafenib part of this last Saturday and will add the MEK in a week or two. I was in BAD shape when I started and because of significant abdominal issues my onc wanted me to start the one and add the other later to avoid causing too much within my stomach. All I did was lay on the couch and sweat. By day 3 I noticed that I was feeling better and today I feel hugely better. I'm still slow to get around, I spent a month hardly eating and laying around before I got on this so I am significantly weaker and it will take a while to build up strength. But so far things have been awesome on this and I'm curious if it will stay as smooth once the MEK is added.

good luck and I'll be watching how you do on this.

I started the dabrafenib part of this last Saturday and will add the MEK in a week or two. I was in BAD shape when I started and because of significant abdominal issues my onc wanted me to start the one and add the other later to avoid causing too much within my stomach. All I did was lay on the couch and sweat. By day 3 I noticed that I was feeling better and today I feel hugely better. I'm still slow to get around, I spent a month hardly eating and laying around before I got on this so I am significantly weaker and it will take a while to build up strength. But so far things have been awesome on this and I'm curious if it will stay as smooth once the MEK is added.

good luck and I'll be watching how you do on this.

I started the dabrafenib part of this last Saturday and will add the MEK in a week or two. I was in BAD shape when I started and because of significant abdominal issues my onc wanted me to start the one and add the other later to avoid causing too much within my stomach. All I did was lay on the couch and sweat. By day 3 I noticed that I was feeling better and today I feel hugely better. I'm still slow to get around, I spent a month hardly eating and laying around before I got on this so I am significantly weaker and it will take a while to build up strength. But so far things have been awesome on this and I'm curious if it will stay as smooth once the MEK is added.

good luck and I'll be watching how you do on this.