Zelboraf – Starting Treatment in 13 days: What to Expect?

Everyone responds to Zel differently, you should ask your doc about traveling, but I’d say go for it if it makes you happy – pack up your medical records and go. Maybe give it a couple of weeks furst. I had been on for 3 mos and went to Italy. Some people have an easy time but everyone pretty much has some level of sun sensitivity – take the information you’re given on that very seriously especially in Florida. It can be dangerous.

I had 2 rounds of Zometa after a bone met removal and reconstructive surgery. 1st I was a little achy, 2nd was worse, more like flu, but no lasting issues. Well, ha ha, have lots of ” issues” but none from Zometa I don’t think.

Peace to you both through this difficult journey!

Everyone responds to Zel differently, you should ask your doc about traveling, but I’d say go for it if it makes you happy – pack up your medical records and go. Maybe give it a couple of weeks furst. I had been on for 3 mos and went to Italy. Some people have an easy time but everyone pretty much has some level of sun sensitivity – take the information you’re given on that very seriously especially in Florida. It can be dangerous.

I had 2 rounds of Zometa after a bone met removal and reconstructive surgery. 1st I was a little achy, 2nd was worse, more like flu, but no lasting issues. Well, ha ha, have lots of ” issues” but none from Zometa I don’t think.

Peace to you both through this difficult journey!

Everyone responds to Zel differently, you should ask your doc about traveling, but I’d say go for it if it makes you happy – pack up your medical records and go. Maybe give it a couple of weeks furst. I had been on for 3 mos and went to Italy. Some people have an easy time but everyone pretty much has some level of sun sensitivity – take the information you’re given on that very seriously especially in Florida. It can be dangerous.

I had 2 rounds of Zometa after a bone met removal and reconstructive surgery. 1st I was a little achy, 2nd was worse, more like flu, but no lasting issues. Well, ha ha, have lots of ” issues” but none from Zometa I don’t think.

Peace to you both through this difficult journey!

My husband has been on Zelboraf for 16 months:). When he started, he had mets all over. They were gone within a few months and is currently NEDl. Joint pain and severe sun sensitivity are the biggest issues. He ended up with sun poisoning last year when we went to the beach…we were cautious..sun tent, sunscreen, lip balm, big floppy hat, etc. and he still got fried! I would wait a few weeks after starting treatment….some people have bad reactions and that will give you time to know how he reacts. We’ve traveled a lot…always take medical records with us and have learned to do a little research on hospitals ahead of time, so we know where to go, just in case. Only 1 time did we end up in the ER on a trip…fortunately, it was “just” for a kidney stone. I would say “go for it!”. Enjoy the time. Hopefully the Zelboraf will work for him and he’ll start to feel better.

My husband has been on Zelboraf for 16 months:). When he started, he had mets all over. They were gone within a few months and is currently NEDl. Joint pain and severe sun sensitivity are the biggest issues. He ended up with sun poisoning last year when we went to the beach…we were cautious..sun tent, sunscreen, lip balm, big floppy hat, etc. and he still got fried! I would wait a few weeks after starting treatment….some people have bad reactions and that will give you time to know how he reacts. We’ve traveled a lot…always take medical records with us and have learned to do a little research on hospitals ahead of time, so we know where to go, just in case. Only 1 time did we end up in the ER on a trip…fortunately, it was “just” for a kidney stone. I would say “go for it!”. Enjoy the time. Hopefully the Zelboraf will work for him and he’ll start to feel better.

My husband has been on Zelboraf for 16 months:). When he started, he had mets all over. They were gone within a few months and is currently NEDl. Joint pain and severe sun sensitivity are the biggest issues. He ended up with sun poisoning last year when we went to the beach…we were cautious..sun tent, sunscreen, lip balm, big floppy hat, etc. and he still got fried! I would wait a few weeks after starting treatment….some people have bad reactions and that will give you time to know how he reacts. We’ve traveled a lot…always take medical records with us and have learned to do a little research on hospitals ahead of time, so we know where to go, just in case. Only 1 time did we end up in the ER on a trip…fortunately, it was “just” for a kidney stone. I would say “go for it!”. Enjoy the time. Hopefully the Zelboraf will work for him and he’ll start to feel better.

Hey Janet,

My vote is to take the trip. While I’m sure there are people who experience serious side effects, I’m pretty sure that most people just experience joint pain, sun sensitivity, and hair loss. I personally experienced all three of those. If there’s a danger from being away from your husband’s doctors, I would think the danger would be from the disease, not from this particular drug. In other words, I don’t think it’s likely that the drug itself will have you rushing to your doctor. I did want to second what others have said here about sunscreen. The sun sensitivity can be absolutely crazy. I mean, all the doctors told me about it and I heard patients talk about it, but I still wasn’t prepared for how intense it actually was. You get burned places you didn’t realize could burn. My fingers burned. The insides of my ears burned. Lips totally blistered. You literally have to put sunscreen on every part of your skin, including inside your ear, and if you’re out in the sun for longer than like a half hour, I personally found that I would still get sunburned, no matter how much sunscreen I put on.

That being said, have a wonderful time together in Florida!

Josh

Hey Janet,

My vote is to take the trip. While I’m sure there are people who experience serious side effects, I’m pretty sure that most people just experience joint pain, sun sensitivity, and hair loss. I personally experienced all three of those. If there’s a danger from being away from your husband’s doctors, I would think the danger would be from the disease, not from this particular drug. In other words, I don’t think it’s likely that the drug itself will have you rushing to your doctor. I did want to second what others have said here about sunscreen. The sun sensitivity can be absolutely crazy. I mean, all the doctors told me about it and I heard patients talk about it, but I still wasn’t prepared for how intense it actually was. You get burned places you didn’t realize could burn. My fingers burned. The insides of my ears burned. Lips totally blistered. You literally have to put sunscreen on every part of your skin, including inside your ear, and if you’re out in the sun for longer than like a half hour, I personally found that I would still get sunburned, no matter how much sunscreen I put on.

That being said, have a wonderful time together in Florida!

Josh

Hey Janet,

My vote is to take the trip. While I’m sure there are people who experience serious side effects, I’m pretty sure that most people just experience joint pain, sun sensitivity, and hair loss. I personally experienced all three of those. If there’s a danger from being away from your husband’s doctors, I would think the danger would be from the disease, not from this particular drug. In other words, I don’t think it’s likely that the drug itself will have you rushing to your doctor. I did want to second what others have said here about sunscreen. The sun sensitivity can be absolutely crazy. I mean, all the doctors told me about it and I heard patients talk about it, but I still wasn’t prepared for how intense it actually was. You get burned places you didn’t realize could burn. My fingers burned. The insides of my ears burned. Lips totally blistered. You literally have to put sunscreen on every part of your skin, including inside your ear, and if you’re out in the sun for longer than like a half hour, I personally found that I would still get sunburned, no matter how much sunscreen I put on.

That being said, have a wonderful time together in Florida!

Josh

My 82 year old father started Zel at the highest dose, 8 pills a day. Within 10 days the reaction was so bad that he wound up in the Personal Care Unit where they live. The detoxed him from the Zel for his skin to calm down (major rash) and his weakness to subside (he could not get up and down himself). About two weeks ago he started on it again at the lowest dose, 2 pills a day, to see how he can tolerate it. So far so good. This week we go back to doc to see about increasing dose to 4 pills a day.

My advice to you is start at a low or mid range dose to see how well you can tolerate it. Then adjust from there. At least ask the doc what he/she thinks aobut that approach. Seems like docs always start at the highest dose and when you are already not well it can knock you off your feet. It did to my dad, literally.

Good luck. I hope these meds work for you!!!

~Michelle

My 82 year old father started Zel at the highest dose, 8 pills a day. Within 10 days the reaction was so bad that he wound up in the Personal Care Unit where they live. The detoxed him from the Zel for his skin to calm down (major rash) and his weakness to subside (he could not get up and down himself). About two weeks ago he started on it again at the lowest dose, 2 pills a day, to see how he can tolerate it. So far so good. This week we go back to doc to see about increasing dose to 4 pills a day.

My advice to you is start at a low or mid range dose to see how well you can tolerate it. Then adjust from there. At least ask the doc what he/she thinks aobut that approach. Seems like docs always start at the highest dose and when you are already not well it can knock you off your feet. It did to my dad, literally.

Good luck. I hope these meds work for you!!!

~Michelle

My 82 year old father started Zel at the highest dose, 8 pills a day. Within 10 days the reaction was so bad that he wound up in the Personal Care Unit where they live. The detoxed him from the Zel for his skin to calm down (major rash) and his weakness to subside (he could not get up and down himself). About two weeks ago he started on it again at the lowest dose, 2 pills a day, to see how he can tolerate it. So far so good. This week we go back to doc to see about increasing dose to 4 pills a day.

My advice to you is start at a low or mid range dose to see how well you can tolerate it. Then adjust from there. At least ask the doc what he/she thinks aobut that approach. Seems like docs always start at the highest dose and when you are already not well it can knock you off your feet. It did to my dad, literally.

Good luck. I hope these meds work for you!!!

~Michelle

Hi Janet,

As others have said everyone is different in their response to Zelboraf. First, I will tell you that when I started Zelboraf I had several mets… a couple in my pancreas, and in the area in fron of my pancreas, and some in the muscles of my back, one beginning to attach to my intestines & one dangerously close to my aorta. After 2 1/2 months on the drug all the areas were COMPLETELY resolved! It worked quickly to reset the clock for us, we feel… we did not have time to wait for a slower acting treatment.

As for side effects: when I first started I had a bad skin reaction within a week and had to be taken off, treated with steroids and restarted at a lower dose. It seems that if one is going to have this type of reaction that it happens shortly after starting. I only mention that because I am not sure how soon after starting tx you plan to head south, but waiting a week or two after starting might be prudent ( just a thought). The only other thing I would caution about is sun exposure…again, everyone seems different. For me, I could not be in the sun for more than 2-3 minutes without getting a blistering burn. Had to wear sunscreen even for car rides and carry a parasol always. I normally do not burn easily, so the extreme nature of the photosensitivity surprised me. Just be careful with that and be prepared.Everything exposed requires caution…including sunscreen lip balm. I would still have been able to thoroughly enjoy a vacation in FL 🙂    . I think most Drs would be willing under the circumstances to call in a script if needed for other possible side effects if they arose while you were out of state.

I was pretty uneasy about starting Zelboraf after reading all of the material, but like I said the response was miraculous, and you can sure read more success stories on this board. Have a WONDERFUL time enjoying  Florida…I grew up down there & love the beauty of the ocean and the palm trees!

Tina

Hi Janet,

As others have said everyone is different in their response to Zelboraf. First, I will tell you that when I started Zelboraf I had several mets… a couple in my pancreas, and in the area in fron of my pancreas, and some in the muscles of my back, one beginning to attach to my intestines & one dangerously close to my aorta. After 2 1/2 months on the drug all the areas were COMPLETELY resolved! It worked quickly to reset the clock for us, we feel… we did not have time to wait for a slower acting treatment.

As for side effects: when I first started I had a bad skin reaction within a week and had to be taken off, treated with steroids and restarted at a lower dose. It seems that if one is going to have this type of reaction that it happens shortly after starting. I only mention that because I am not sure how soon after starting tx you plan to head south, but waiting a week or two after starting might be prudent ( just a thought). The only other thing I would caution about is sun exposure…again, everyone seems different. For me, I could not be in the sun for more than 2-3 minutes without getting a blistering burn. Had to wear sunscreen even for car rides and carry a parasol always. I normally do not burn easily, so the extreme nature of the photosensitivity surprised me. Just be careful with that and be prepared.Everything exposed requires caution…including sunscreen lip balm. I would still have been able to thoroughly enjoy a vacation in FL 🙂    . I think most Drs would be willing under the circumstances to call in a script if needed for other possible side effects if they arose while you were out of state.

I was pretty uneasy about starting Zelboraf after reading all of the material, but like I said the response was miraculous, and you can sure read more success stories on this board. Have a WONDERFUL time enjoying  Florida…I grew up down there & love the beauty of the ocean and the palm trees!

Tina

Hi Janet,

As others have said everyone is different in their response to Zelboraf. First, I will tell you that when I started Zelboraf I had several mets… a couple in my pancreas, and in the area in fron of my pancreas, and some in the muscles of my back, one beginning to attach to my intestines & one dangerously close to my aorta. After 2 1/2 months on the drug all the areas were COMPLETELY resolved! It worked quickly to reset the clock for us, we feel… we did not have time to wait for a slower acting treatment.

As for side effects: when I first started I had a bad skin reaction within a week and had to be taken off, treated with steroids and restarted at a lower dose. It seems that if one is going to have this type of reaction that it happens shortly after starting. I only mention that because I am not sure how soon after starting tx you plan to head south, but waiting a week or two after starting might be prudent ( just a thought). The only other thing I would caution about is sun exposure…again, everyone seems different. For me, I could not be in the sun for more than 2-3 minutes without getting a blistering burn. Had to wear sunscreen even for car rides and carry a parasol always. I normally do not burn easily, so the extreme nature of the photosensitivity surprised me. Just be careful with that and be prepared.Everything exposed requires caution…including sunscreen lip balm. I would still have been able to thoroughly enjoy a vacation in FL 🙂    . I think most Drs would be willing under the circumstances to call in a script if needed for other possible side effects if they arose while you were out of state.

I was pretty uneasy about starting Zelboraf after reading all of the material, but like I said the response was miraculous, and you can sure read more success stories on this board. Have a WONDERFUL time enjoying  Florida…I grew up down there & love the beauty of the ocean and the palm trees!

Tina

Janet,

I have been on Zelboraf fpr 16 months. I went on the full dose and after 6 weeks I had to stop because it affected my liver.

It is important to have blood tests as recommended by your doctor to make sure your liver is ok.

After being off of the meds for 7 weeks I started back on 1/2 dose and the meds worked well and shrunk my tumors and no new tumors as of last weeks cat scan. Be real carefull with the sun. I live in Oregon and lots of rain but still have to use high sunscreens to keep from burning.

Make sure that your liver will process the Med. before you leave.

Butch

Janet,

I have been on Zelboraf fpr 16 months. I went on the full dose and after 6 weeks I had to stop because it affected my liver.

It is important to have blood tests as recommended by your doctor to make sure your liver is ok.

After being off of the meds for 7 weeks I started back on 1/2 dose and the meds worked well and shrunk my tumors and no new tumors as of last weeks cat scan. Be real carefull with the sun. I live in Oregon and lots of rain but still have to use high sunscreens to keep from burning.

Make sure that your liver will process the Med. before you leave.

Butch

Janet,

I have been on Zelboraf fpr 16 months. I went on the full dose and after 6 weeks I had to stop because it affected my liver.

It is important to have blood tests as recommended by your doctor to make sure your liver is ok.

After being off of the meds for 7 weeks I started back on 1/2 dose and the meds worked well and shrunk my tumors and no new tumors as of last weeks cat scan. Be real carefull with the sun. I live in Oregon and lots of rain but still have to use high sunscreens to keep from burning.

Make sure that your liver will process the Med. before you leave.

Butch

I have been on Z, 6 pills a day for 4 1/2 months. Sun sensitivity is a huge issue and I have joint pain which is fairly bad until I start moving around then it gets much better!

I have been on Z, 6 pills a day for 4 1/2 months. Sun sensitivity is a huge issue and I have joint pain which is fairly bad until I start moving around then it gets much better!

I have been on Z, 6 pills a day for 4 1/2 months. Sun sensitivity is a huge issue and I have joint pain which is fairly bad until I start moving around then it gets much better!