HELP – Serious RED FACE with splotches after ZELBORAF ?

This topic has 42 replies, 7 voices, and was last updated 13 years, 8 months ago by Snickers60.

Post

- April 28, 2012 at 7:38 pm
- Quote
Snickers60
Participant
Anyone have this ?   It's nowhere else on Wayne's body, but his face looks like he BURNED IT.    He started taking ZEL on Monday night. Poor thing was convinced he had read to take 2 pills in the morning, 2 at night……that is not what the script says.    It is 4 in the AM and 4 in the PM, so he started that on Wednesday night, when he realized his mistake.   The rash began almost immediately. Has gotten worse. HE HAD NO SYMPTOMS ON 2 – 2 X D !

Anyone have this ?   It's nowhere else on Wayne's body, but his face looks like he BURNED IT.    He started taking ZEL on Monday night. Poor thing was convinced he had read to take 2 pills in the morning, 2 at night……that is not what the script says.    It is 4 in the AM and 4 in the PM, so he started that on Wednesday night, when he realized his mistake.   The rash began almost immediately. Has gotten worse. HE HAD NO SYMPTOMS ON 2 – 2 X D !

Can anyone give me input on this ?    Is there a ZEL Number to call 24/7 until he can get back to them at MDA !

Also, where do you all find SUNSCREEN clothes ?    Good choices and good prices ?

WORRIED……..

Thanks so much,
Nancy caretaker of beloved patient and WARRIOR WAYNE 🙂

Viewing 17 reply threads

Replies

- - April 28, 2012 at 7:58 pm
  - Quote
  Linny
  Participant
  Hi Nancy,
  
  Sorry to hear Wayne's having some issues with Zelboraf. From reading posts by other people, Zelboraf can make you prone to sunburn. But this sounds like something different. You might want to give the oncologist's office a call, like now. I'm sure they have a number to reach someone during off hours.
  
  LL Bean has some UV protection clothing available. So does R.E.I. Don't know about prices but you can try googling "UV protection clothing".
  - April 28, 2012 at 8:10 pm
    
    Quote
    Snickers60
    Participant
    
    Thank you so much for replying Linny !    I think we may become fast friends. 🙂    Wayne is calling Oncologist office here in town NOW !    He did so well on the 4 a days, but this just threw him into orbit with the rash.   He has only walked to car in sun, etc. – has not been in sun.
    
    NOT BEING IN SUN – does that mean AT ALL ?   Like you need to cover yourself with an umbrella and really not be in it at all.   He also has HERPS 2 and they get bad on his lips.    He is prone to skin rashes.
    
    This is scary.   Doing soooooo well and then BOOM !
    
    Thanks for tip on clothes !    He has a few things, but needs more.
    
    I'll update…….
    
    THANK YOU
  - April 28, 2012 at 8:10 pm
    
    Quote
    Snickers60
    Participant
    
    Thank you so much for replying Linny !    I think we may become fast friends. 🙂    Wayne is calling Oncologist office here in town NOW !    He did so well on the 4 a days, but this just threw him into orbit with the rash.   He has only walked to car in sun, etc. – has not been in sun.
    
    NOT BEING IN SUN – does that mean AT ALL ?   Like you need to cover yourself with an umbrella and really not be in it at all.   He also has HERPS 2 and they get bad on his lips.    He is prone to skin rashes.
    
    This is scary.   Doing soooooo well and then BOOM !
    
    Thanks for tip on clothes !    He has a few things, but needs more.
    
    I'll update…….
    
    THANK YOU
  - April 28, 2012 at 8:10 pm
    
    Quote
    Snickers60
    Participant
    
    Thank you so much for replying Linny !    I think we may become fast friends. 🙂    Wayne is calling Oncologist office here in town NOW !    He did so well on the 4 a days, but this just threw him into orbit with the rash.   He has only walked to car in sun, etc. – has not been in sun.
    
    NOT BEING IN SUN – does that mean AT ALL ?   Like you need to cover yourself with an umbrella and really not be in it at all.   He also has HERPS 2 and they get bad on his lips.    He is prone to skin rashes.
    
    This is scary.   Doing soooooo well and then BOOM !
    
    Thanks for tip on clothes !    He has a few things, but needs more.
    
    I'll update…….
    
    THANK YOU
- - April 28, 2012 at 7:58 pm
  - Quote
  Linny
  Participant
  Hi Nancy,
  
  Sorry to hear Wayne's having some issues with Zelboraf. From reading posts by other people, Zelboraf can make you prone to sunburn. But this sounds like something different. You might want to give the oncologist's office a call, like now. I'm sure they have a number to reach someone during off hours.
  
  LL Bean has some UV protection clothing available. So does R.E.I. Don't know about prices but you can try googling "UV protection clothing".
- - April 28, 2012 at 7:58 pm
  - Quote
  Linny
  Participant
  Hi Nancy,
  
  Sorry to hear Wayne's having some issues with Zelboraf. From reading posts by other people, Zelboraf can make you prone to sunburn. But this sounds like something different. You might want to give the oncologist's office a call, like now. I'm sure they have a number to reach someone during off hours.
  
  LL Bean has some UV protection clothing available. So does R.E.I. Don't know about prices but you can try googling "UV protection clothing".
- - April 28, 2012 at 8:22 pm
  - Quote
  aldakota22
  Participant
  Zelboraf does have side effects.Maybe he had too much sun.There is a hot line to Biologics about this med any questions you may have. It is a 24 hr. pharmicist on call at 1-800-850-4306. Hope this helps.Prayers go out to both of you. Al
  - April 28, 2012 at 8:59 pm
    
    Quote
    Snickers60
    Participant
    
    Thanks so much……call in to Oncologist now. Thanks for the hotline ……good to know.
    
    Update soon…….
  - April 28, 2012 at 8:59 pm
    
    Quote
    Snickers60
    Participant
    
    Thanks so much……call in to Oncologist now. Thanks for the hotline ……good to know.
    
    Update soon…….
  - April 28, 2012 at 8:59 pm
    
    Quote
    Snickers60
    Participant
    
    Thanks so much……call in to Oncologist now. Thanks for the hotline ……good to know.
    
    Update soon…….
- - April 28, 2012 at 8:22 pm
  - Quote
  aldakota22
  Participant
  Zelboraf does have side effects.Maybe he had too much sun.There is a hot line to Biologics about this med any questions you may have. It is a 24 hr. pharmicist on call at 1-800-850-4306. Hope this helps.Prayers go out to both of you. Al
- - April 28, 2012 at 8:22 pm
  - Quote
  aldakota22
  Participant
  Zelboraf does have side effects.Maybe he had too much sun.There is a hot line to Biologics about this med any questions you may have. It is a 24 hr. pharmicist on call at 1-800-850-4306. Hope this helps.Prayers go out to both of you. Al
- - April 29, 2012 at 12:25 am
  - Quote
  Linny
  Participant
  I hope everything's going all right for Wayne. I'm glad you made the phone call to inquire about his rash.
  
  I think that with Zelboraf you need to really be careful when going out in the sun because it makes your skin really sensitive to it. Getting UV protection clothing is a good idea. I'd also have him wear sunscreen on exposed areas and wear a brimmed hat. Not a baseball cap, but a hat with a brim that goes all the way around. It doesn't mean you need to stay cooped up indoors, it just means you need to be smart and prudent when you head outdoors. 🙂
- - April 29, 2012 at 12:25 am
  - Quote
  Linny
  Participant
  I hope everything's going all right for Wayne. I'm glad you made the phone call to inquire about his rash.
  
  I think that with Zelboraf you need to really be careful when going out in the sun because it makes your skin really sensitive to it. Getting UV protection clothing is a good idea. I'd also have him wear sunscreen on exposed areas and wear a brimmed hat. Not a baseball cap, but a hat with a brim that goes all the way around. It doesn't mean you need to stay cooped up indoors, it just means you need to be smart and prudent when you head outdoors. 🙂
- - April 29, 2012 at 12:25 am
  - Quote
  Linny
  Participant
  I hope everything's going all right for Wayne. I'm glad you made the phone call to inquire about his rash.
  
  I think that with Zelboraf you need to really be careful when going out in the sun because it makes your skin really sensitive to it. Getting UV protection clothing is a good idea. I'd also have him wear sunscreen on exposed areas and wear a brimmed hat. Not a baseball cap, but a hat with a brim that goes all the way around. It doesn't mean you need to stay cooped up indoors, it just means you need to be smart and prudent when you head outdoors. 🙂
- - April 29, 2012 at 1:56 am
  - Quote
  s Mom
  Participant
  Hi Nancy,
  
  My son is on Zelboraf (has just finished his first month) and had an itchy red rash on his arms and legs after 3 weeks. Good news – it went away! Also, his face gets a little red right after he takes his dose, but it goes away after an hour or so. However, he does have bad joint pain now.
  
  Wayne has to be really careful in the sun – you can get sunburned on this medication within 10 minutes!! Have him wear sunblock and SPF 50 lip balm even in the car. I bought Jeff some sunscreen shirts and cargo pants at REI – pricey, but SPF 50. They have some cute hats there with a drape that protects the neck.
  
  Google Zelboraf and there is a number on Genetech's site for an on-call nurse. Give her a call until you can call your oncologist.
  
  Hope that helps – praying Wayne has a good response 🙂 Take care,
  
  Bridgette (Jeff's Mom)
- - April 29, 2012 at 1:56 am
  - Quote
  s Mom
  Participant
  Hi Nancy,
  
  My son is on Zelboraf (has just finished his first month) and had an itchy red rash on his arms and legs after 3 weeks. Good news – it went away! Also, his face gets a little red right after he takes his dose, but it goes away after an hour or so. However, he does have bad joint pain now.
  
  Wayne has to be really careful in the sun – you can get sunburned on this medication within 10 minutes!! Have him wear sunblock and SPF 50 lip balm even in the car. I bought Jeff some sunscreen shirts and cargo pants at REI – pricey, but SPF 50. They have some cute hats there with a drape that protects the neck.
  
  Google Zelboraf and there is a number on Genetech's site for an on-call nurse. Give her a call until you can call your oncologist.
  
  Hope that helps – praying Wayne has a good response 🙂 Take care,
  
  Bridgette (Jeff's Mom)
- - April 29, 2012 at 1:56 am
  - Quote
  s Mom
  Participant
  Hi Nancy,
  
  My son is on Zelboraf (has just finished his first month) and had an itchy red rash on his arms and legs after 3 weeks. Good news – it went away! Also, his face gets a little red right after he takes his dose, but it goes away after an hour or so. However, he does have bad joint pain now.
  
  Wayne has to be really careful in the sun – you can get sunburned on this medication within 10 minutes!! Have him wear sunblock and SPF 50 lip balm even in the car. I bought Jeff some sunscreen shirts and cargo pants at REI – pricey, but SPF 50. They have some cute hats there with a drape that protects the neck.
  
  Google Zelboraf and there is a number on Genetech's site for an on-call nurse. Give her a call until you can call your oncologist.
  
  Hope that helps – praying Wayne has a good response 🙂 Take care,
  
  Bridgette (Jeff's Mom)
- - April 29, 2012 at 1:09 pm
  - Quote
  Richard_K
  Participant
  Nancy
  
  I lot of good advice for you and Wayne above. From personal experience, do not discount the power of the sun even for very brief periods of time. If I am not careful, I can burn very early or late in the day. Good Luck.
  
  Dick
- - April 29, 2012 at 1:09 pm
  - Quote
  Richard_K
  Participant
  Nancy
  
  I lot of good advice for you and Wayne above. From personal experience, do not discount the power of the sun even for very brief periods of time. If I am not careful, I can burn very early or late in the day. Good Luck.
  
  Dick
  - April 29, 2012 at 6:03 pm
    
    Quote
    Snickers60
    Participant
    
    OK – Local Oncologist vs MDA Oncologist –   Called local doc…45 minutes later, nurse calls, then she has to call Doc and wait for him to call her – he says STOP taking med until Monday when we can see you.
    
    Wayne then calls DOC AT MDA – 3 mintues later, literally, he was on the phone with his DOC HIMSELF…not a nurse…not a NP, not an answering service, but with the DOC HIMSELF…..who told Wayne to KEEP TAKING It and STAY OUT OF THE SUN….a MUST.   Be very, very careful in the sun.   Wayne has always had a problem with rashes taboot.
    
    So it's looking some better today and he went early to drugstore and bought all kinds of sun screen (had that on yesterday too) and umbrella and shopping now for more SUN BLOCK clothes.   We like their clothes at Coolibar.    Suppose he's about to become a long sleeve, hat wearing DUDE ! 🙂
    
    Thank you all so much for your quick response and help.   It helps sooo much to know there's so many here with experience that are willing to help us NEWBIES AGAIN !    (Melanoma on ear lobe 1999) .
    
    So, guess we'll be doing a lot of inside projects, movies, etc.     Sitting out only very early in shade and very late…..I hope that's OK…sure hope we don't have to boycott the GREAT OUTDOORS altogether.     We are such outdoor folks…or were.
    
    BLESSINGS AND HEALTH to everyone,
    
    Nancy (wife of warrior Wayne)
  - April 29, 2012 at 6:03 pm
    
    Quote
    Snickers60
    Participant
    
    OK – Local Oncologist vs MDA Oncologist –   Called local doc…45 minutes later, nurse calls, then she has to call Doc and wait for him to call her – he says STOP taking med until Monday when we can see you.
    
    Wayne then calls DOC AT MDA – 3 mintues later, literally, he was on the phone with his DOC HIMSELF…not a nurse…not a NP, not an answering service, but with the DOC HIMSELF…..who told Wayne to KEEP TAKING It and STAY OUT OF THE SUN….a MUST.   Be very, very careful in the sun.   Wayne has always had a problem with rashes taboot.
    
    So it's looking some better today and he went early to drugstore and bought all kinds of sun screen (had that on yesterday too) and umbrella and shopping now for more SUN BLOCK clothes.   We like their clothes at Coolibar.    Suppose he's about to become a long sleeve, hat wearing DUDE ! 🙂
    
    Thank you all so much for your quick response and help.   It helps sooo much to know there's so many here with experience that are willing to help us NEWBIES AGAIN !    (Melanoma on ear lobe 1999) .
    
    So, guess we'll be doing a lot of inside projects, movies, etc.     Sitting out only very early in shade and very late…..I hope that's OK…sure hope we don't have to boycott the GREAT OUTDOORS altogether.     We are such outdoor folks…or were.
    
    BLESSINGS AND HEALTH to everyone,
    
    Nancy (wife of warrior Wayne)
  - April 29, 2012 at 6:32 pm
    
    Quote
    Linny
    Participant
    
    Hi Nancy! I'm glad to hear Wayne's all right. Good thing the doc at MDA was available when he called. You may be hesitant to call a doc on a weekend, but that's why their offices have numbers to call during the off hours just for times like this, plus — the peace of mind is worth it.
    
    Yes, the shade will be Wayne's best friend. There's no need to boycott the outdoors, though. You just need to be really careful, especially since he's taking Zelboraf. And, it looks like you're off to a good start. You may just want to schedule your outdoor activities early in the morning or late in the afternoon to avoid that strong midday sun.
  - April 29, 2012 at 6:32 pm
    
    Quote
    Linny
    Participant
    
    Hi Nancy! I'm glad to hear Wayne's all right. Good thing the doc at MDA was available when he called. You may be hesitant to call a doc on a weekend, but that's why their offices have numbers to call during the off hours just for times like this, plus — the peace of mind is worth it.
    
    Yes, the shade will be Wayne's best friend. There's no need to boycott the outdoors, though. You just need to be really careful, especially since he's taking Zelboraf. And, it looks like you're off to a good start. You may just want to schedule your outdoor activities early in the morning or late in the afternoon to avoid that strong midday sun.
  - April 29, 2012 at 6:32 pm
    
    Quote
    Linny
    Participant
    
    Hi Nancy! I'm glad to hear Wayne's all right. Good thing the doc at MDA was available when he called. You may be hesitant to call a doc on a weekend, but that's why their offices have numbers to call during the off hours just for times like this, plus — the peace of mind is worth it.
    
    Yes, the shade will be Wayne's best friend. There's no need to boycott the outdoors, though. You just need to be really careful, especially since he's taking Zelboraf. And, it looks like you're off to a good start. You may just want to schedule your outdoor activities early in the morning or late in the afternoon to avoid that strong midday sun.
  - April 29, 2012 at 6:03 pm
    
    Quote
    Snickers60
    Participant
    
    OK – Local Oncologist vs MDA Oncologist –   Called local doc…45 minutes later, nurse calls, then she has to call Doc and wait for him to call her – he says STOP taking med until Monday when we can see you.
    
    Wayne then calls DOC AT MDA – 3 mintues later, literally, he was on the phone with his DOC HIMSELF…not a nurse…not a NP, not an answering service, but with the DOC HIMSELF…..who told Wayne to KEEP TAKING It and STAY OUT OF THE SUN….a MUST.   Be very, very careful in the sun.   Wayne has always had a problem with rashes taboot.
    
    So it's looking some better today and he went early to drugstore and bought all kinds of sun screen (had that on yesterday too) and umbrella and shopping now for more SUN BLOCK clothes.   We like their clothes at Coolibar.    Suppose he's about to become a long sleeve, hat wearing DUDE ! 🙂
    
    Thank you all so much for your quick response and help.   It helps sooo much to know there's so many here with experience that are willing to help us NEWBIES AGAIN !    (Melanoma on ear lobe 1999) .
    
    So, guess we'll be doing a lot of inside projects, movies, etc.     Sitting out only very early in shade and very late…..I hope that's OK…sure hope we don't have to boycott the GREAT OUTDOORS altogether.     We are such outdoor folks…or were.
    
    BLESSINGS AND HEALTH to everyone,
    
    Nancy (wife of warrior Wayne)
- - April 29, 2012 at 1:09 pm
  - Quote
  Richard_K
  Participant
  Nancy
  
  I lot of good advice for you and Wayne above. From personal experience, do not discount the power of the sun even for very brief periods of time. If I am not careful, I can burn very early or late in the day. Good Luck.
  
  Dick
- - May 10, 2012 at 8:46 pm
  - Quote
  Tina D
  Participant
  I just completed my first week on Zelboraf . My face is red and puffy and I have an ever-increasing rash everywhere that is now itching like crazy. Called the oncologist and hey said to stop it for 3 days and then let them know how I am. Also started me on a medrol dose-pack.Anyone else with this issue? Did it require a dosage decrease? I hate to have to lower the dosage already.
  - May 20, 2012 at 5:29 am
    
    Quote
    H555
    Participant
    
    I had the spreading rash at the end of week one and my Onc dr's on call onc nurse cut my dosage in half. i stayed with that for 3 weeks and now am adding back a pill a week. I did fine with 2 in the morning and 2 in the afternoon. I also learned from the Zelboraf hotline nurse that 2 and 2 was the minimum therapeutic dose the trial identified. my mets were in my lungs and i could tell within in a week that the drug was working. my body settled down to intermittent side effects during that 3 weeks so i'm cautiously moving up a pill a week to get to at least 3 and 3.
  - May 20, 2012 at 5:29 am
    
    Quote
    H555
    Participant
    
    I had the spreading rash at the end of week one and my Onc dr's on call onc nurse cut my dosage in half. i stayed with that for 3 weeks and now am adding back a pill a week. I did fine with 2 in the morning and 2 in the afternoon. I also learned from the Zelboraf hotline nurse that 2 and 2 was the minimum therapeutic dose the trial identified. my mets were in my lungs and i could tell within in a week that the drug was working. my body settled down to intermittent side effects during that 3 weeks so i'm cautiously moving up a pill a week to get to at least 3 and 3.
  - May 28, 2012 at 3:05 am
    
    Quote
    Tina D
    Participant
    
    The Doc removed me from Zelboraf for 2 weeks until the rash had cleared up ( my skin was still kind-of motled blotchy looking) and restarted me on the 3 tabs twice a day. How are you doing now on the 3 tabs? I am glad the drug is making a difference for you so quickly – that must be such a relief for you! I hope you are doing well on the new dosage and appreciate you posting here.
  - May 28, 2012 at 3:05 am
    
    Quote
    Tina D
    Participant
    
    The Doc removed me from Zelboraf for 2 weeks until the rash had cleared up ( my skin was still kind-of motled blotchy looking) and restarted me on the 3 tabs twice a day. How are you doing now on the 3 tabs? I am glad the drug is making a difference for you so quickly – that must be such a relief for you! I hope you are doing well on the new dosage and appreciate you posting here.
  - May 28, 2012 at 1:58 pm
    
    Quote
    Snickers60
    Participant
    
    Wayne started FULL DOSE – 4 tabs twice a day – back within 48 hours.   He is having some serious pain in the joints as it travels around, and the benadryl seems to have helped the rash a LOT.   You can still feel the bumps, but not see them very well at all.   Overall his color looks good and he seems to be having better day.
    
    He has taken a bedroll to work to lie down at lunch for he tires easily, but after seeing the biggest tumor 2.6 has shrunk to 1.8 in only 3 weeks, we were very uplifted and encouraged and it gave Wayne the WHEREWITHALL 🙂 to bite the bullet and hang with the full dose.   This weekend he seems to be more chipper than I've seen him and able to do more around the house.   Getting it ready to sell and move in the middle of this nightmare is NOT FUN !
    
    We have the HAIR PULLER appt. June 13th at MDA and PET to see how he's REALLY DOING !
    
    He has mets to the lung, liver, (couple of spots) sternum, L-5, leg/bone.    We are also trying to TCB (take of business as far as Wills, Cemeteries, etc. are concerned.   We actually had fun picking out our Tombstone ! 🙂    Know that sounds morbid and without faith, but we do our part, God does his.   I am also very ill with Fibro and Lupus and we must be smart. Wayne has been my caretaker for 10 years.
    
    HOPE THIS WILL ENCOURAGE SOMEONE in some small way.   We are dancing as fast as we can to keep JOB, INS., get moved, GET WELL, and do all those millions of things that life calls for with 2 monster illnesses on top !   ONE DAY AT A TIME ! MANNA FOR TODAY ONLY !    God bless you all with healing and health and all good things.
    
    Will post the RESULTS SHOW 🙂 after the June visit to MDA !   Will be there 3 days this time.
    
    Nancy G. (devoted wife of 3 times warrior Wayne)
  - May 28, 2012 at 1:58 pm
    
    Quote
    Snickers60
    Participant
    
    Wayne started FULL DOSE – 4 tabs twice a day – back within 48 hours.   He is having some serious pain in the joints as it travels around, and the benadryl seems to have helped the rash a LOT.   You can still feel the bumps, but not see them very well at all.   Overall his color looks good and he seems to be having better day.
    
    He has taken a bedroll to work to lie down at lunch for he tires easily, but after seeing the biggest tumor 2.6 has shrunk to 1.8 in only 3 weeks, we were very uplifted and encouraged and it gave Wayne the WHEREWITHALL 🙂 to bite the bullet and hang with the full dose.   This weekend he seems to be more chipper than I've seen him and able to do more around the house.   Getting it ready to sell and move in the middle of this nightmare is NOT FUN !
    
    We have the HAIR PULLER appt. June 13th at MDA and PET to see how he's REALLY DOING !
    
    He has mets to the lung, liver, (couple of spots) sternum, L-5, leg/bone.    We are also trying to TCB (take of business as far as Wills, Cemeteries, etc. are concerned.   We actually had fun picking out our Tombstone ! 🙂    Know that sounds morbid and without faith, but we do our part, God does his.   I am also very ill with Fibro and Lupus and we must be smart. Wayne has been my caretaker for 10 years.
    
    HOPE THIS WILL ENCOURAGE SOMEONE in some small way.   We are dancing as fast as we can to keep JOB, INS., get moved, GET WELL, and do all those millions of things that life calls for with 2 monster illnesses on top !   ONE DAY AT A TIME ! MANNA FOR TODAY ONLY !    God bless you all with healing and health and all good things.
    
    Will post the RESULTS SHOW 🙂 after the June visit to MDA !   Will be there 3 days this time.
    
    Nancy G. (devoted wife of 3 times warrior Wayne)
  - May 28, 2012 at 2:05 pm
    
    Quote
    Snickers60
    Participant
    
    Should read: Started taking full dose – 4 tabs twices a day after being hospitalized for fever. NO MORE FEVERS I'm proud to report. Low, Low grade at night maybe, but that's it. He was even out yesterday in the shade at noon and it did not have that awful effect on him. Hopefully he will be able to be outdoors more in the early morning and late evening now, for being COOPED up is not fun.
  - May 28, 2012 at 2:05 pm
    
    Quote
    Snickers60
    Participant
    
    Should read: Started taking full dose – 4 tabs twices a day after being hospitalized for fever. NO MORE FEVERS I'm proud to report. Low, Low grade at night maybe, but that's it. He was even out yesterday in the shade at noon and it did not have that awful effect on him. Hopefully he will be able to be outdoors more in the early morning and late evening now, for being COOPED up is not fun.
  - May 28, 2012 at 2:05 pm
    
    Quote
    Snickers60
    Participant
    
    Should read: Started taking full dose – 4 tabs twices a day after being hospitalized for fever. NO MORE FEVERS I'm proud to report. Low, Low grade at night maybe, but that's it. He was even out yesterday in the shade at noon and it did not have that awful effect on him. Hopefully he will be able to be outdoors more in the early morning and late evening now, for being COOPED up is not fun.
  - May 28, 2012 at 1:58 pm
    
    Quote
    Snickers60
    Participant
    
    Wayne started FULL DOSE – 4 tabs twice a day – back within 48 hours.   He is having some serious pain in the joints as it travels around, and the benadryl seems to have helped the rash a LOT.   You can still feel the bumps, but not see them very well at all.   Overall his color looks good and he seems to be having better day.
    
    He has taken a bedroll to work to lie down at lunch for he tires easily, but after seeing the biggest tumor 2.6 has shrunk to 1.8 in only 3 weeks, we were very uplifted and encouraged and it gave Wayne the WHEREWITHALL 🙂 to bite the bullet and hang with the full dose.   This weekend he seems to be more chipper than I've seen him and able to do more around the house.   Getting it ready to sell and move in the middle of this nightmare is NOT FUN !
    
    We have the HAIR PULLER appt. June 13th at MDA and PET to see how he's REALLY DOING !
    
    He has mets to the lung, liver, (couple of spots) sternum, L-5, leg/bone.    We are also trying to TCB (take of business as far as Wills, Cemeteries, etc. are concerned.   We actually had fun picking out our Tombstone ! 🙂    Know that sounds morbid and without faith, but we do our part, God does his.   I am also very ill with Fibro and Lupus and we must be smart. Wayne has been my caretaker for 10 years.
    
    HOPE THIS WILL ENCOURAGE SOMEONE in some small way.   We are dancing as fast as we can to keep JOB, INS., get moved, GET WELL, and do all those millions of things that life calls for with 2 monster illnesses on top !   ONE DAY AT A TIME ! MANNA FOR TODAY ONLY !    God bless you all with healing and health and all good things.
    
    Will post the RESULTS SHOW 🙂 after the June visit to MDA !   Will be there 3 days this time.
    
    Nancy G. (devoted wife of 3 times warrior Wayne)
  - May 28, 2012 at 3:05 am
    
    Quote
    Tina D
    Participant
    
    The Doc removed me from Zelboraf for 2 weeks until the rash had cleared up ( my skin was still kind-of motled blotchy looking) and restarted me on the 3 tabs twice a day. How are you doing now on the 3 tabs? I am glad the drug is making a difference for you so quickly – that must be such a relief for you! I hope you are doing well on the new dosage and appreciate you posting here.
  - May 20, 2012 at 5:29 am
    
    Quote
    H555
    Participant
    
    I had the spreading rash at the end of week one and my Onc dr's on call onc nurse cut my dosage in half. i stayed with that for 3 weeks and now am adding back a pill a week. I did fine with 2 in the morning and 2 in the afternoon. I also learned from the Zelboraf hotline nurse that 2 and 2 was the minimum therapeutic dose the trial identified. my mets were in my lungs and i could tell within in a week that the drug was working. my body settled down to intermittent side effects during that 3 weeks so i'm cautiously moving up a pill a week to get to at least 3 and 3.
- - May 10, 2012 at 8:46 pm
  - Quote
  Tina D
  Participant
  I just completed my first week on Zelboraf . My face is red and puffy and I have an ever-increasing rash everywhere that is now itching like crazy. Called the oncologist and hey said to stop it for 3 days and then let them know how I am. Also started me on a medrol dose-pack.Anyone else with this issue? Did it require a dosage decrease? I hate to have to lower the dosage already.
- - May 10, 2012 at 8:46 pm
  - Quote
  Tina D
  Participant
  I just completed my first week on Zelboraf . My face is red and puffy and I have an ever-increasing rash everywhere that is now itching like crazy. Called the oncologist and hey said to stop it for 3 days and then let them know how I am. Also started me on a medrol dose-pack.Anyone else with this issue? Did it require a dosage decrease? I hate to have to lower the dosage already.