› Forums › General Melanoma Community › Zelboraf
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- November 15, 2011 at 9:03 pm
Hello! My father was diagnosed with melanoma (on top of his head) 12yrs ago. He had surgery to remove and was told if he made it 5yrs without recurrence he should be "in the clear". Unfortunately, last month he began having abdominal pain and weakness which resulted in him being hospitalized. While there a CT was performed which revealed recurrence of the melanoma. He has mets to an area beside of his kidney, a lesion in his omentum and positive lymph nodes in his chest. He has malignant melanoma (BRAF V6
Hello! My father was diagnosed with melanoma (on top of his head) 12yrs ago. He had surgery to remove and was told if he made it 5yrs without recurrence he should be "in the clear". Unfortunately, last month he began having abdominal pain and weakness which resulted in him being hospitalized. While there a CT was performed which revealed recurrence of the melanoma. He has mets to an area beside of his kidney, a lesion in his omentum and positive lymph nodes in his chest. He has malignant melanoma (BRAF V600 mutation). He began the drug Zelboraf today. I'm very interested in speaking to anyone that may have information about this medication (side effects, response rate, etc).
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- November 15, 2011 at 9:22 pm
Hi sorry to hear that your father's melanoma is back. My father has been on Zelboraf for 3 months now and he has had fairly mild side effects. The major ones are sore joints which seems to move around the body from day to day. The other is extreme sun sensitivity, he will need 30plus sunscreen on before he leaves the house regardless of the weather. Mild hair thinning and perhaps a little fatigue. I know it's different for every person but I have heard that the highly tumor burden the worse the side effects. Sounds like your dad has a low tumor burden. Please let us know how your dad goes.
All the best and hope this is helpful.
Nahmi from Melbourne
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- November 15, 2011 at 9:22 pm
Hi sorry to hear that your father's melanoma is back. My father has been on Zelboraf for 3 months now and he has had fairly mild side effects. The major ones are sore joints which seems to move around the body from day to day. The other is extreme sun sensitivity, he will need 30plus sunscreen on before he leaves the house regardless of the weather. Mild hair thinning and perhaps a little fatigue. I know it's different for every person but I have heard that the highly tumor burden the worse the side effects. Sounds like your dad has a low tumor burden. Please let us know how your dad goes.
All the best and hope this is helpful.
Nahmi from Melbourne
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- November 15, 2011 at 9:22 pm
Hi sorry to hear that your father's melanoma is back. My father has been on Zelboraf for 3 months now and he has had fairly mild side effects. The major ones are sore joints which seems to move around the body from day to day. The other is extreme sun sensitivity, he will need 30plus sunscreen on before he leaves the house regardless of the weather. Mild hair thinning and perhaps a little fatigue. I know it's different for every person but I have heard that the highly tumor burden the worse the side effects. Sounds like your dad has a low tumor burden. Please let us know how your dad goes.
All the best and hope this is helpful.
Nahmi from Melbourne
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- November 15, 2011 at 10:32 pm
My husband has been on Zalboraf for almost a month. For him it’s a really easy treatment. Lots of fatigue and severe sun sensitivity…long sleeves, big hat, 30 SPF and lip balm anytime he’s outside. Other than that, no troubles. The one tumor we could feel was completely gone within a week of starting treatment…pretty amazing. Not sure how long it will last, but we’re enjoying each day. -
- November 15, 2011 at 10:32 pm
My husband has been on Zalboraf for almost a month. For him it’s a really easy treatment. Lots of fatigue and severe sun sensitivity…long sleeves, big hat, 30 SPF and lip balm anytime he’s outside. Other than that, no troubles. The one tumor we could feel was completely gone within a week of starting treatment…pretty amazing. Not sure how long it will last, but we’re enjoying each day.-
- November 16, 2011 at 1:32 pm
hi,
I am going into my fourth month on it. I had great scan results at 2 months. 50% shrinkage – my tumors were lung, liver and bone. I go for my next scans after thanksgiving, fingers crossed it is continuing to do its job!!
My side effects have def been sun sensitivity – even here in the fall in Maine I have to cover up during 10-2 or my lips especially blister and have to wear a hat or the part on my hair burns, always have sun screen handy. I have also had body hair loss, no real eyebrows left so drawing them on (my family kid that I can make myself look mad, happy or surprised haha) I have just started having hair on my head loss which is too bad. I also grew lots of warts and several squamous cells(that were removed) on the trunk part of my body that happeed the first two months. The growths seemed to have slowed down alot now but initially it was very disturbing. I do have slight upset stomach sometimes but found small meals are the key. Fatigue is also a come and go side effect, but I have found making myself get out and walk helps. All in all the side effects are very liveable – and I am thrilled to be able to breath and have no pain
good luck! keep us posted.
laurie from maine
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- November 16, 2011 at 1:32 pm
hi,
I am going into my fourth month on it. I had great scan results at 2 months. 50% shrinkage – my tumors were lung, liver and bone. I go for my next scans after thanksgiving, fingers crossed it is continuing to do its job!!
My side effects have def been sun sensitivity – even here in the fall in Maine I have to cover up during 10-2 or my lips especially blister and have to wear a hat or the part on my hair burns, always have sun screen handy. I have also had body hair loss, no real eyebrows left so drawing them on (my family kid that I can make myself look mad, happy or surprised haha) I have just started having hair on my head loss which is too bad. I also grew lots of warts and several squamous cells(that were removed) on the trunk part of my body that happeed the first two months. The growths seemed to have slowed down alot now but initially it was very disturbing. I do have slight upset stomach sometimes but found small meals are the key. Fatigue is also a come and go side effect, but I have found making myself get out and walk helps. All in all the side effects are very liveable – and I am thrilled to be able to breath and have no pain
good luck! keep us posted.
laurie from maine
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- November 16, 2011 at 1:32 pm
hi,
I am going into my fourth month on it. I had great scan results at 2 months. 50% shrinkage – my tumors were lung, liver and bone. I go for my next scans after thanksgiving, fingers crossed it is continuing to do its job!!
My side effects have def been sun sensitivity – even here in the fall in Maine I have to cover up during 10-2 or my lips especially blister and have to wear a hat or the part on my hair burns, always have sun screen handy. I have also had body hair loss, no real eyebrows left so drawing them on (my family kid that I can make myself look mad, happy or surprised haha) I have just started having hair on my head loss which is too bad. I also grew lots of warts and several squamous cells(that were removed) on the trunk part of my body that happeed the first two months. The growths seemed to have slowed down alot now but initially it was very disturbing. I do have slight upset stomach sometimes but found small meals are the key. Fatigue is also a come and go side effect, but I have found making myself get out and walk helps. All in all the side effects are very liveable – and I am thrilled to be able to breath and have no pain
good luck! keep us posted.
laurie from maine
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- November 15, 2011 at 10:32 pm
My husband has been on Zalboraf for almost a month. For him it’s a really easy treatment. Lots of fatigue and severe sun sensitivity…long sleeves, big hat, 30 SPF and lip balm anytime he’s outside. Other than that, no troubles. The one tumor we could feel was completely gone within a week of starting treatment…pretty amazing. Not sure how long it will last, but we’re enjoying each day. -
- November 16, 2011 at 2:02 pm
Hello,
My lungs were filled with "innumerable" nodes and 80% with fluid when I started BRAF/Zelboraf. Within 2 days, I was breathing much better, my neck (egg sized lump protrusion) was visibly diminshing, and so on.
I'm on my third month now. EXTREME sun sensitivity, painful lumps (ereythema nodusums) which flare and resolve in 2-3 days (mainly on my legs/feet, some on my arms). Now developing very painful, but "floating" arthritis.
Definitely hair thinning. No brows, few lashes. BUT I don't have to shave. ๐ Ladies at the makeup counters are my new best friends.
Fatigue, comes and goes. That's what husband and kids are for, to help out! Have to learn to listen and rest, before I get wiped out (I work full time).
Latest scans on 10/24 = NO lung nodes, tiny pocket of fluid, neck down by 75%.
I just had to have my lung drained yesterday, I was filled back up to 50%.I knew I was getting bad, I was gasping for breath after exertion (laundry, housework, etc). Find out results tomorrow: side effect but BRAF still working, or starting not to respond?! It can be a seesaw, to say the least.
Prayers to your dad, and your family!
TracyLee Stage IV May 2011
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- November 16, 2011 at 2:02 pm
Hello,
My lungs were filled with "innumerable" nodes and 80% with fluid when I started BRAF/Zelboraf. Within 2 days, I was breathing much better, my neck (egg sized lump protrusion) was visibly diminshing, and so on.
I'm on my third month now. EXTREME sun sensitivity, painful lumps (ereythema nodusums) which flare and resolve in 2-3 days (mainly on my legs/feet, some on my arms). Now developing very painful, but "floating" arthritis.
Definitely hair thinning. No brows, few lashes. BUT I don't have to shave. ๐ Ladies at the makeup counters are my new best friends.
Fatigue, comes and goes. That's what husband and kids are for, to help out! Have to learn to listen and rest, before I get wiped out (I work full time).
Latest scans on 10/24 = NO lung nodes, tiny pocket of fluid, neck down by 75%.
I just had to have my lung drained yesterday, I was filled back up to 50%.I knew I was getting bad, I was gasping for breath after exertion (laundry, housework, etc). Find out results tomorrow: side effect but BRAF still working, or starting not to respond?! It can be a seesaw, to say the least.
Prayers to your dad, and your family!
TracyLee Stage IV May 2011
-
- November 16, 2011 at 2:02 pm
Hello,
My lungs were filled with "innumerable" nodes and 80% with fluid when I started BRAF/Zelboraf. Within 2 days, I was breathing much better, my neck (egg sized lump protrusion) was visibly diminshing, and so on.
I'm on my third month now. EXTREME sun sensitivity, painful lumps (ereythema nodusums) which flare and resolve in 2-3 days (mainly on my legs/feet, some on my arms). Now developing very painful, but "floating" arthritis.
Definitely hair thinning. No brows, few lashes. BUT I don't have to shave. ๐ Ladies at the makeup counters are my new best friends.
Fatigue, comes and goes. That's what husband and kids are for, to help out! Have to learn to listen and rest, before I get wiped out (I work full time).
Latest scans on 10/24 = NO lung nodes, tiny pocket of fluid, neck down by 75%.
I just had to have my lung drained yesterday, I was filled back up to 50%.I knew I was getting bad, I was gasping for breath after exertion (laundry, housework, etc). Find out results tomorrow: side effect but BRAF still working, or starting not to respond?! It can be a seesaw, to say the least.
Prayers to your dad, and your family!
TracyLee Stage IV May 2011
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- November 16, 2011 at 4:09 pm
Hi
I have some feelings of guilt sharing my good fortune, but I think you would benefit from hearing from someone who has been experiencing phenomenal results with Zelboraf. I am part of the phase II trial and will shortly be completing my 21st month on the drug. (Scans next week, I feel good, and expect continued good results.)
My side effects have been very manageable and tolerated well. There has been body rash (none on face), body hair loss (very little on head), very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot, warts on various parts of body with some taken off. All except one wart that was taken off was benign, one was a squamous-cell carcinoma. Side effects toady are: body rash (none on face), body hair almost all grown back, still very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot. New warts are very few and far between.
The sun sensitivity has been hard to deal with as I love to work in the yard. In addition to the long pants, long sleeve shirt, wide brimmed hat, and sun screen, my secret weapon is a 10 x 10 foot shade canopy that has an aluminized fabric on it. I get a good laugh when I get a second glance from someone seeing me like this on a cloudy day.
I hope this is helpful and wish you and your father the best.
Dick
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- November 16, 2011 at 4:09 pm
Hi
I have some feelings of guilt sharing my good fortune, but I think you would benefit from hearing from someone who has been experiencing phenomenal results with Zelboraf. I am part of the phase II trial and will shortly be completing my 21st month on the drug. (Scans next week, I feel good, and expect continued good results.)
My side effects have been very manageable and tolerated well. There has been body rash (none on face), body hair loss (very little on head), very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot, warts on various parts of body with some taken off. All except one wart that was taken off was benign, one was a squamous-cell carcinoma. Side effects toady are: body rash (none on face), body hair almost all grown back, still very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot. New warts are very few and far between.
The sun sensitivity has been hard to deal with as I love to work in the yard. In addition to the long pants, long sleeve shirt, wide brimmed hat, and sun screen, my secret weapon is a 10 x 10 foot shade canopy that has an aluminized fabric on it. I get a good laugh when I get a second glance from someone seeing me like this on a cloudy day.
I hope this is helpful and wish you and your father the best.
Dick
-
- November 16, 2011 at 4:09 pm
Hi
I have some feelings of guilt sharing my good fortune, but I think you would benefit from hearing from someone who has been experiencing phenomenal results with Zelboraf. I am part of the phase II trial and will shortly be completing my 21st month on the drug. (Scans next week, I feel good, and expect continued good results.)
My side effects have been very manageable and tolerated well. There has been body rash (none on face), body hair loss (very little on head), very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot, warts on various parts of body with some taken off. All except one wart that was taken off was benign, one was a squamous-cell carcinoma. Side effects toady are: body rash (none on face), body hair almost all grown back, still very sensitive to sun, mild neuropathy in both feet, mild swelling in left foot. New warts are very few and far between.
The sun sensitivity has been hard to deal with as I love to work in the yard. In addition to the long pants, long sleeve shirt, wide brimmed hat, and sun screen, my secret weapon is a 10 x 10 foot shade canopy that has an aluminized fabric on it. I get a good laugh when I get a second glance from someone seeing me like this on a cloudy day.
I hope this is helpful and wish you and your father the best.
Dick
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