› Forums › General Melanoma Community › Zelboraf side effects
- This topic has 27 replies, 8 voices, and was last updated 12 years, 11 months ago by
Erinmay22.
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- June 8, 2012 at 2:14 am
Ok so I know this topic has been brought up a lot! I'm about 10 days in to taking it. I've noticed horrible joint pain (waking me up at night). As long as I remember to take some anti-inflammatory medicine and get up and move around it seems manageable.
I am also starting to notice a rash – doesn't seem to really itch yet but I suppose it's only a matter of time. I'll call my med onc/derm tomorrow to find out what I should do but curious as to what folks did to help manage a rash.
Thanks!
Erin
Ok so I know this topic has been brought up a lot! I'm about 10 days in to taking it. I've noticed horrible joint pain (waking me up at night). As long as I remember to take some anti-inflammatory medicine and get up and move around it seems manageable.
I am also starting to notice a rash – doesn't seem to really itch yet but I suppose it's only a matter of time. I'll call my med onc/derm tomorrow to find out what I should do but curious as to what folks did to help manage a rash.
Thanks!
Erin
- Replies
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- June 8, 2012 at 3:04 am
Fortunately the joint pain was tolerable enough for me to be able to run 4 miles 2 months after starting zelboraf. I used the anti-inflamatory diclofinac and glutocosamine/chondroitin. Never had much problem with rashes other than raised sort of like semi-permanent goose bumps. Now I’m about 9 months into the zelboraf. The running lasted about a month and now I’m not able to walk without front pad foot pain….due to a combination of high arches and zelboraf. I think side effects are different for different people. One thing everyone seems to have a problem with is the sun. You will fry quickly without high SPF sunscreen or cover-up.
I hope you’re as fortunate with the side effects as I’ve been.
Bruce. -
- June 8, 2012 at 3:04 am
Fortunately the joint pain was tolerable enough for me to be able to run 4 miles 2 months after starting zelboraf. I used the anti-inflamatory diclofinac and glutocosamine/chondroitin. Never had much problem with rashes other than raised sort of like semi-permanent goose bumps. Now I’m about 9 months into the zelboraf. The running lasted about a month and now I’m not able to walk without front pad foot pain….due to a combination of high arches and zelboraf. I think side effects are different for different people. One thing everyone seems to have a problem with is the sun. You will fry quickly without high SPF sunscreen or cover-up.
I hope you’re as fortunate with the side effects as I’ve been.
Bruce. -
- June 8, 2012 at 3:04 am
Fortunately the joint pain was tolerable enough for me to be able to run 4 miles 2 months after starting zelboraf. I used the anti-inflamatory diclofinac and glutocosamine/chondroitin. Never had much problem with rashes other than raised sort of like semi-permanent goose bumps. Now I’m about 9 months into the zelboraf. The running lasted about a month and now I’m not able to walk without front pad foot pain….due to a combination of high arches and zelboraf. I think side effects are different for different people. One thing everyone seems to have a problem with is the sun. You will fry quickly without high SPF sunscreen or cover-up.
I hope you’re as fortunate with the side effects as I’ve been.
Bruce. -
- June 8, 2012 at 4:20 am
I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients. Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well. My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth". Hang in there and hope things go ok for you. Take CareRobyn
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- June 8, 2012 at 4:20 am
I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients. Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well. My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth". Hang in there and hope things go ok for you. Take CareRobyn
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- June 8, 2012 at 4:20 am
I have been on Zelorf since December. Watch the rash! While it is a common side effect it can turn into Steven Johnson syndrome which can be fatal. I went to bed on the 31st with a minor rash, no itching. by the evening Jan.1 the rash was severe. I had a temp. of 106. ER- given steroids, lab work. Liver functions were very high so remained on steroids for 1 week. Removed from Z for 3 weeks untill Liver Function numbers were in normal range. I am on 1/2 dose now. It is working. Just found out NED. I have had sig. brain mets and lung met. My MDA told me that they " as physicans" are not stressing the sig. of the rash and fever to patients. Be sure to contact your Dr. so they can monitor the rash. As my rash resolved my skin did peel some. As someone else reminded, be sure to stay covered up. I took my shoes off for less than 10 min. and ended up with a blistering burn that scared. It was crazy, my feet were in the shade at the time as well. My joints, peridoically hurt. The pain is minor to at times sig. The pain travels around. Feet are always sore though. My hair did thin after 3 weeks but has stopped and am having "regrowth". Hang in there and hope things go ok for you. Take CareRobyn
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- June 8, 2012 at 2:00 pm
I was on Z for 1 week, when the minor rash turned very severe and spread everywhere. I had to be taken off for 2 weeks and take steroids to get it under control. I did try every topical thing we could find for relief of the rash and the intense itching, but the only thing that seemed to help at all was a cool oatmeal bath. Went back on at 75% dosage and no further problems with that. Still get small rash and some strange sore lumps under my skin, but they come and go. The overa-ll joint pain was very bad for abt 3 days ( I had to hobble to get anywhere and it was quite pinful) , then it subsided greatly. Now it will be apparent in 1 joint for a day or two, but not to the point where I am needing meds for it. Bottom of feet were also very painful, now tender at times, but very tolerable. Low grade fever comes and goes. Occasional nausea, and once in a while I take phenergan for that. Over – all, I am currently finding the side efffects very tolerable. DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly. I am on day 13 of the reduced dosage. Will be seein my onc in 3 days for labs.
Hope your rash is behaving itself and that you are doing well. Let us know what your Drs say.
Take Care!!
Tina
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- June 8, 2012 at 2:00 pm
I was on Z for 1 week, when the minor rash turned very severe and spread everywhere. I had to be taken off for 2 weeks and take steroids to get it under control. I did try every topical thing we could find for relief of the rash and the intense itching, but the only thing that seemed to help at all was a cool oatmeal bath. Went back on at 75% dosage and no further problems with that. Still get small rash and some strange sore lumps under my skin, but they come and go. The overa-ll joint pain was very bad for abt 3 days ( I had to hobble to get anywhere and it was quite pinful) , then it subsided greatly. Now it will be apparent in 1 joint for a day or two, but not to the point where I am needing meds for it. Bottom of feet were also very painful, now tender at times, but very tolerable. Low grade fever comes and goes. Occasional nausea, and once in a while I take phenergan for that. Over – all, I am currently finding the side efffects very tolerable. DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly. I am on day 13 of the reduced dosage. Will be seein my onc in 3 days for labs.
Hope your rash is behaving itself and that you are doing well. Let us know what your Drs say.
Take Care!!
Tina
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- June 8, 2012 at 3:48 pm
Hi Guys – thanks so much for the feedback. The joint pain is worst at night when sleeping. As long as I'm up and moving it's not so bad.
As for the rash – woke up this morning with seeing it had spread EVERYWHERE! worst of it on my neck and chest. Talked with my nurse and we're going to go ahead and take a break this weekend from it. On some benedryl and cordizone. Hopefully it will subside quickly over the weekend! On Monday we'll decide if we go back to full dose or a reduced…
Oh the fun things we go thru! Guess it could be worse? and yes trying to avoid sun at all costs (well at least when out fully covered up!)
Ok time for lunch and a nap. Decided to work from home today since the rash is all over… yuck!
Erin
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- June 8, 2012 at 3:48 pm
Hi Guys – thanks so much for the feedback. The joint pain is worst at night when sleeping. As long as I'm up and moving it's not so bad.
As for the rash – woke up this morning with seeing it had spread EVERYWHERE! worst of it on my neck and chest. Talked with my nurse and we're going to go ahead and take a break this weekend from it. On some benedryl and cordizone. Hopefully it will subside quickly over the weekend! On Monday we'll decide if we go back to full dose or a reduced…
Oh the fun things we go thru! Guess it could be worse? and yes trying to avoid sun at all costs (well at least when out fully covered up!)
Ok time for lunch and a nap. Decided to work from home today since the rash is all over… yuck!
Erin
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- June 8, 2012 at 4:58 pm
I'ver been on Zelboraf for 10 weeks now. Yesterday we had a consultation with my medical oncologist to review CT scans from last week. I knew I was better because my mets were in my lungs and an airway was partially blocked so I was short of breath all the time. I had "numerous" nodules and masses throughout both lungs.
During the weekend of my first week on Z i had the same massive rash and my doc cut my dose in half for a month. thta helped a lot. then about 4 weeks ago i began adding back one pill a day till i got to 4 in the am and 4 in the pm.
My CT scans showed that 98% of the malignant mets are gone, this is truly a miracle drug. my doc thihnks I might get to NED, which would be amazing. when he first saw me in late March he wasn't sure i'd make it to summer – he didn't tell us that till yesterday but i knew I was in a bad way.
I have had foot pain that moved around and a few days when I wanted a cane. I've got lots of skin tags and every mole on my body has changed. I see my dematologist on Monday.and I burn very easily as others have said.
I'd call the on-call number for your doc and see if you can reduce your dose till the side effects subside. That whole body rash never came back for me after the first weekend. Best of luck. I hope the Zelboraf gives you great results
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- June 8, 2012 at 4:58 pm
I'ver been on Zelboraf for 10 weeks now. Yesterday we had a consultation with my medical oncologist to review CT scans from last week. I knew I was better because my mets were in my lungs and an airway was partially blocked so I was short of breath all the time. I had "numerous" nodules and masses throughout both lungs.
During the weekend of my first week on Z i had the same massive rash and my doc cut my dose in half for a month. thta helped a lot. then about 4 weeks ago i began adding back one pill a day till i got to 4 in the am and 4 in the pm.
My CT scans showed that 98% of the malignant mets are gone, this is truly a miracle drug. my doc thihnks I might get to NED, which would be amazing. when he first saw me in late March he wasn't sure i'd make it to summer – he didn't tell us that till yesterday but i knew I was in a bad way.
I have had foot pain that moved around and a few days when I wanted a cane. I've got lots of skin tags and every mole on my body has changed. I see my dematologist on Monday.and I burn very easily as others have said.
I'd call the on-call number for your doc and see if you can reduce your dose till the side effects subside. That whole body rash never came back for me after the first weekend. Best of luck. I hope the Zelboraf gives you great results
-
- June 8, 2012 at 4:58 pm
I'ver been on Zelboraf for 10 weeks now. Yesterday we had a consultation with my medical oncologist to review CT scans from last week. I knew I was better because my mets were in my lungs and an airway was partially blocked so I was short of breath all the time. I had "numerous" nodules and masses throughout both lungs.
During the weekend of my first week on Z i had the same massive rash and my doc cut my dose in half for a month. thta helped a lot. then about 4 weeks ago i began adding back one pill a day till i got to 4 in the am and 4 in the pm.
My CT scans showed that 98% of the malignant mets are gone, this is truly a miracle drug. my doc thihnks I might get to NED, which would be amazing. when he first saw me in late March he wasn't sure i'd make it to summer – he didn't tell us that till yesterday but i knew I was in a bad way.
I have had foot pain that moved around and a few days when I wanted a cane. I've got lots of skin tags and every mole on my body has changed. I see my dematologist on Monday.and I burn very easily as others have said.
I'd call the on-call number for your doc and see if you can reduce your dose till the side effects subside. That whole body rash never came back for me after the first weekend. Best of luck. I hope the Zelboraf gives you great results
-
- June 8, 2012 at 3:48 pm
Hi Guys – thanks so much for the feedback. The joint pain is worst at night when sleeping. As long as I'm up and moving it's not so bad.
As for the rash – woke up this morning with seeing it had spread EVERYWHERE! worst of it on my neck and chest. Talked with my nurse and we're going to go ahead and take a break this weekend from it. On some benedryl and cordizone. Hopefully it will subside quickly over the weekend! On Monday we'll decide if we go back to full dose or a reduced…
Oh the fun things we go thru! Guess it could be worse? and yes trying to avoid sun at all costs (well at least when out fully covered up!)
Ok time for lunch and a nap. Decided to work from home today since the rash is all over… yuck!
Erin
-
- June 8, 2012 at 2:00 pm
I was on Z for 1 week, when the minor rash turned very severe and spread everywhere. I had to be taken off for 2 weeks and take steroids to get it under control. I did try every topical thing we could find for relief of the rash and the intense itching, but the only thing that seemed to help at all was a cool oatmeal bath. Went back on at 75% dosage and no further problems with that. Still get small rash and some strange sore lumps under my skin, but they come and go. The overa-ll joint pain was very bad for abt 3 days ( I had to hobble to get anywhere and it was quite pinful) , then it subsided greatly. Now it will be apparent in 1 joint for a day or two, but not to the point where I am needing meds for it. Bottom of feet were also very painful, now tender at times, but very tolerable. Low grade fever comes and goes. Occasional nausea, and once in a while I take phenergan for that. Over – all, I am currently finding the side efffects very tolerable. DO be extremely careful abt the sun!! I burn in under 3 minutes. I stay out of direct sun and when going in and out I have to stay covered with sunscreen, a hat, a parasol and clothing. I am ordering a UV protective shirt to cover my arms when out. VERy VERy photosensitive and I think that even small amts of sun exposure can make the rash worse fairly quickly. I am on day 13 of the reduced dosage. Will be seein my onc in 3 days for labs.
Hope your rash is behaving itself and that you are doing well. Let us know what your Drs say.
Take Care!!
Tina
-
- June 8, 2012 at 7:08 pm
Will finish 9th month on "Z'on Sat. The side effects have been very tolerable.Initally had joint pain for fist month.Lost hair and taste to certain foods.Other side effect was and still is occasional bout of the runs for 1 to 2 days approx. every month.Tumors have shrunk 50-75% as of scans taken in April.This is a life saving drug.Praying it works forever for me and everyone else on it.All the best to you. Al
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- June 8, 2012 at 7:08 pm
Will finish 9th month on "Z'on Sat. The side effects have been very tolerable.Initally had joint pain for fist month.Lost hair and taste to certain foods.Other side effect was and still is occasional bout of the runs for 1 to 2 days approx. every month.Tumors have shrunk 50-75% as of scans taken in April.This is a life saving drug.Praying it works forever for me and everyone else on it.All the best to you. Al
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- June 8, 2012 at 7:08 pm
Will finish 9th month on "Z'on Sat. The side effects have been very tolerable.Initally had joint pain for fist month.Lost hair and taste to certain foods.Other side effect was and still is occasional bout of the runs for 1 to 2 days approx. every month.Tumors have shrunk 50-75% as of scans taken in April.This is a life saving drug.Praying it works forever for me and everyone else on it.All the best to you. Al
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- June 10, 2012 at 4:21 pm
I am on both Zelboraf and a MEK inhibitor through a clinical trial, and both drugs have rash as a side effect. I got it bad after the second week, covering my arms, legs, torso, some on my face. Oatmeal baths were very helpful as someone already mentioned. I also used aloe vera ointment which relived the itching. The rash is now about ten days old and is definitely getting better. I was put on topical steroid ointment on Thursday, but I think it was resolving before then.
Also had joint pains, fever/chills, some nausea. Hit me hardest going into the third week of treatment. Now it is all basically gone except for the rash! It was about five days of hell, now everything is very tolerable!
Eileen L
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- June 10, 2012 at 4:21 pm
I am on both Zelboraf and a MEK inhibitor through a clinical trial, and both drugs have rash as a side effect. I got it bad after the second week, covering my arms, legs, torso, some on my face. Oatmeal baths were very helpful as someone already mentioned. I also used aloe vera ointment which relived the itching. The rash is now about ten days old and is definitely getting better. I was put on topical steroid ointment on Thursday, but I think it was resolving before then.
Also had joint pains, fever/chills, some nausea. Hit me hardest going into the third week of treatment. Now it is all basically gone except for the rash! It was about five days of hell, now everything is very tolerable!
Eileen L
-
- June 10, 2012 at 4:21 pm
I am on both Zelboraf and a MEK inhibitor through a clinical trial, and both drugs have rash as a side effect. I got it bad after the second week, covering my arms, legs, torso, some on my face. Oatmeal baths were very helpful as someone already mentioned. I also used aloe vera ointment which relived the itching. The rash is now about ten days old and is definitely getting better. I was put on topical steroid ointment on Thursday, but I think it was resolving before then.
Also had joint pains, fever/chills, some nausea. Hit me hardest going into the third week of treatment. Now it is all basically gone except for the rash! It was about five days of hell, now everything is very tolerable!
Eileen L
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- June 11, 2012 at 12:33 am
Have been on Z for about a month. Little joint pain, no significant foot sensitivity. Oncologist reduced dose to 6 tablets a day as had constant headache. Continue to have much fatique. Bubbly rashes on elbows have stopped. Intermitent bowel issues. I have canker sores on tongue and gums making eating a challenge. No kidney or liver problems to date. Do not know of response by mets yet, but I am hopeful the side effects are worth the hassle. Also hopeful that itching, fatigue and bowel upset will abate in time.
Prayers and best wishes to our fellow sufferers……………………..Russ
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- June 11, 2012 at 3:18 am
Thanks guys for the responses! My doctors had me stop Zelboraf over the weekend. Basically rash from chin to toes. I think i've just watched it spread and grow… and when the bumps go down I am just really red… It seems to be getting better so far in the areas where it first started (neck and chest). experienced the foot pain today. Joints are ok. Funny how we can still keep getting these side effects even when not taking the drug. Guess it really gets in our system. Was on it for 10 days before this horrible rash. I tried a bath tonight with baking soda. Will try the oatmeal bath as well. Itching has been ok so far… although I may have just jinxed myself!
Guess as long as it's working that's all that matters, right? I'll be back at sloan tomorrow for blood work (They are keeping a close eye on me due to low hemoglobin levels) and will talk with the doctors to see if we start back up tomorrow at a lower dose of they give me something stronger to help the rash first.
Hope you guys enjoyed your weekend! Mine was basically spent sleeping. Benadryl knocks a person out!
Erin
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- June 11, 2012 at 3:18 am
Thanks guys for the responses! My doctors had me stop Zelboraf over the weekend. Basically rash from chin to toes. I think i've just watched it spread and grow… and when the bumps go down I am just really red… It seems to be getting better so far in the areas where it first started (neck and chest). experienced the foot pain today. Joints are ok. Funny how we can still keep getting these side effects even when not taking the drug. Guess it really gets in our system. Was on it for 10 days before this horrible rash. I tried a bath tonight with baking soda. Will try the oatmeal bath as well. Itching has been ok so far… although I may have just jinxed myself!
Guess as long as it's working that's all that matters, right? I'll be back at sloan tomorrow for blood work (They are keeping a close eye on me due to low hemoglobin levels) and will talk with the doctors to see if we start back up tomorrow at a lower dose of they give me something stronger to help the rash first.
Hope you guys enjoyed your weekend! Mine was basically spent sleeping. Benadryl knocks a person out!
Erin
-
- June 11, 2012 at 3:18 am
Thanks guys for the responses! My doctors had me stop Zelboraf over the weekend. Basically rash from chin to toes. I think i've just watched it spread and grow… and when the bumps go down I am just really red… It seems to be getting better so far in the areas where it first started (neck and chest). experienced the foot pain today. Joints are ok. Funny how we can still keep getting these side effects even when not taking the drug. Guess it really gets in our system. Was on it for 10 days before this horrible rash. I tried a bath tonight with baking soda. Will try the oatmeal bath as well. Itching has been ok so far… although I may have just jinxed myself!
Guess as long as it's working that's all that matters, right? I'll be back at sloan tomorrow for blood work (They are keeping a close eye on me due to low hemoglobin levels) and will talk with the doctors to see if we start back up tomorrow at a lower dose of they give me something stronger to help the rash first.
Hope you guys enjoyed your weekend! Mine was basically spent sleeping. Benadryl knocks a person out!
Erin
-
- June 11, 2012 at 12:33 am
Have been on Z for about a month. Little joint pain, no significant foot sensitivity. Oncologist reduced dose to 6 tablets a day as had constant headache. Continue to have much fatique. Bubbly rashes on elbows have stopped. Intermitent bowel issues. I have canker sores on tongue and gums making eating a challenge. No kidney or liver problems to date. Do not know of response by mets yet, but I am hopeful the side effects are worth the hassle. Also hopeful that itching, fatigue and bowel upset will abate in time.
Prayers and best wishes to our fellow sufferers……………………..Russ
-
- June 11, 2012 at 12:33 am
Have been on Z for about a month. Little joint pain, no significant foot sensitivity. Oncologist reduced dose to 6 tablets a day as had constant headache. Continue to have much fatique. Bubbly rashes on elbows have stopped. Intermitent bowel issues. I have canker sores on tongue and gums making eating a challenge. No kidney or liver problems to date. Do not know of response by mets yet, but I am hopeful the side effects are worth the hassle. Also hopeful that itching, fatigue and bowel upset will abate in time.
Prayers and best wishes to our fellow sufferers……………………..Russ
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