› Forums › General Melanoma Community › zelboraf roll call
- This topic has 14 replies, 4 voices, and was last updated 14 years, 4 months ago by
Laurie from maine.
- Post
-
- September 3, 2011 at 6:57 pm
I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf…i want to know everything you are going through…
since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine) i did or which did me in…i am leery of side effects…thank you.
boots
I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf…i want to know everything you are going through…
since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine) i did or which did me in…i am leery of side effects…thank you.
boots
- Replies
-
-
- September 3, 2011 at 9:46 pm
Hi Boots,
zelboraf is the new name for BRAF-Rouche, approved Aug.2011. The side effects below have been reported my MPIPERS. Hopefully someof them willpost for you. I think that these side effects are very real tomany people soyou must take them seriously when deciding on taking zelboraf. Where are you being treatd??
Good Luck
http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1870.html BRAF Inhibitors Side Effects and Management Dr. Kim Margolin Professor of Medicine - University of Washington Member of Division of Clinical Research Fred Hutchinson Cancer Research Center The discovery of a gene mutation in about half of all melanomas that causes uncontrolled activity of the BRAF protein led to the development of powerful drugs to stop the growth of melanoma cells that depend on that pathway for their survival. One such drug, vemurafenib, has provided a major reduction in tumors in about 50% of the patients receiving it and a more modest tumor reduction among another 20% of the patients. Drugs of this class are called "targeted", since they are relatively specific for a particular cancer cell pathway. They are given orally and do not cause typical chemotherapy side effects like hair loss and low blood counts, but they can cause other annoying and even dangerous side effects that need to be managed with other interventions or with dose reductions. The most common side effects are fatigue, altered taste sensation, and a variety of skin changes, including extreme sun sensitivity requiring not only high SPF sunscreen but, in some individuals, almost complete avoidance of any exposure to sunlight. Many patients develop thick, sometimes painful calluses on the palms and soles of the feet that appear yellow and may leave very tender skin underneath when the calluses peel off. Other areas, such as the chest, neck and face, can develop raised pink bumps with rough surfaces, sometimes with prominent growth in one or more spots that turns into a very non-aggressive type of non-melanoma skin cancer. These should be removed surgically but are not life-threatening. Some patients develop signs of inflammation such as painful swollen joints, fever, and chills, that often go away without treatment but may require a short course of steroids to suppress the inflammatory symptoms. While most patients can tolerate these drugs well over long periods of time, some patients will experience symptoms requiring other medications taken orally or applied to the skin. It is important that all patients on these medications remain in close communication with their treating team.
-
- September 3, 2011 at 9:46 pm
Hi Boots,
zelboraf is the new name for BRAF-Rouche, approved Aug.2011. The side effects below have been reported my MPIPERS. Hopefully someof them willpost for you. I think that these side effects are very real tomany people soyou must take them seriously when deciding on taking zelboraf. Where are you being treatd??
Good Luck
http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1870.html BRAF Inhibitors Side Effects and Management Dr. Kim Margolin Professor of Medicine - University of Washington Member of Division of Clinical Research Fred Hutchinson Cancer Research Center The discovery of a gene mutation in about half of all melanomas that causes uncontrolled activity of the BRAF protein led to the development of powerful drugs to stop the growth of melanoma cells that depend on that pathway for their survival. One such drug, vemurafenib, has provided a major reduction in tumors in about 50% of the patients receiving it and a more modest tumor reduction among another 20% of the patients. Drugs of this class are called "targeted", since they are relatively specific for a particular cancer cell pathway. They are given orally and do not cause typical chemotherapy side effects like hair loss and low blood counts, but they can cause other annoying and even dangerous side effects that need to be managed with other interventions or with dose reductions. The most common side effects are fatigue, altered taste sensation, and a variety of skin changes, including extreme sun sensitivity requiring not only high SPF sunscreen but, in some individuals, almost complete avoidance of any exposure to sunlight. Many patients develop thick, sometimes painful calluses on the palms and soles of the feet that appear yellow and may leave very tender skin underneath when the calluses peel off. Other areas, such as the chest, neck and face, can develop raised pink bumps with rough surfaces, sometimes with prominent growth in one or more spots that turns into a very non-aggressive type of non-melanoma skin cancer. These should be removed surgically but are not life-threatening. Some patients develop signs of inflammation such as painful swollen joints, fever, and chills, that often go away without treatment but may require a short course of steroids to suppress the inflammatory symptoms. While most patients can tolerate these drugs well over long periods of time, some patients will experience symptoms requiring other medications taken orally or applied to the skin. It is important that all patients on these medications remain in close communication with their treating team.
-
- September 4, 2011 at 12:05 am
Boots:
I am part of the BRIM 2 trial for Zelboraf since March 2010. Following are the side effects I have experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).
As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.
My profile gives some additional history.
Dick
-
- September 4, 2011 at 12:05 am
Boots:
I am part of the BRIM 2 trial for Zelboraf since March 2010. Following are the side effects I have experienced: mild joint pain, mild fatigue, body rash (none on face), photosensitivity, body hair loss (not head), mild neuropathy/ swelling in feet, and warts (one of which turned out to be a squamous cell carcinoma).
As of today I still have: mild body rash (none on face), photosensitivity, body hair loss (it's growing back), and mild neuropathy/ swelling in feet.
My profile gives some additional history.
Dick
-
- September 5, 2011 at 7:02 pm
Boots,
Read my profile for full details…
I completed Yervoy/ip on 7/29, RAPIDLY spiralled down…began BRAF on 8/8.
For me, it's been a miracle. 8/1 I was in the hospital drowning in lung fluid, 9/1 I'm walking the dog 5 miles!
The U of Penn doctor, feels that I'm a late ipi responder and that BRAF in conjunction with ipi is the magic cocktail.
I know BRAF won't work forever. But I will surely take what I can get!
Best of luck,
TracyLee
-
- September 5, 2011 at 7:02 pm
Boots,
Read my profile for full details…
I completed Yervoy/ip on 7/29, RAPIDLY spiralled down…began BRAF on 8/8.
For me, it's been a miracle. 8/1 I was in the hospital drowning in lung fluid, 9/1 I'm walking the dog 5 miles!
The U of Penn doctor, feels that I'm a late ipi responder and that BRAF in conjunction with ipi is the magic cocktail.
I know BRAF won't work forever. But I will surely take what I can get!
Best of luck,
TracyLee
-
- September 6, 2011 at 12:59 pm
HI,
I started Vemurafenib a month ago. I immediately seemed to feel the pain going away that I was experiencing from bones and ribs(maybe that was lung tumor?) . So that is the positive effect I have had, also lump/tumor in my breast was gone with in two weeks, truly amazing.
Side effects I have had to deal with the sun sensitivity, skin growths and a little joint pain. Have found that being out in sun during 10-2 even with sun screen can cause burns for me, so have had to make sure to really cover up during that time. I have also developed some growths which were recently removed by dermatologist and will be tested. I have also gotten lots of little warts that are popping up all over my body ugh gross and very non sexy ha. I have joint pain in my wrist. But I am fine with these side effects they are all minor and very liveable.
I was told by my oncologist's office that now that drug is approved I will be weaned from clinical trial and become just a patient with my oncologist yeah! I was not a fan of the strictness of the trial, the paperwork, and the worry that I could be bumped off it at any time.
It will be great to hear about all the others doing this drug at this time and hear how you are all doing. Take care everyone, stay strong!
laurie from maine 🙂
-
- September 6, 2011 at 12:59 pm
HI,
I started Vemurafenib a month ago. I immediately seemed to feel the pain going away that I was experiencing from bones and ribs(maybe that was lung tumor?) . So that is the positive effect I have had, also lump/tumor in my breast was gone with in two weeks, truly amazing.
Side effects I have had to deal with the sun sensitivity, skin growths and a little joint pain. Have found that being out in sun during 10-2 even with sun screen can cause burns for me, so have had to make sure to really cover up during that time. I have also developed some growths which were recently removed by dermatologist and will be tested. I have also gotten lots of little warts that are popping up all over my body ugh gross and very non sexy ha. I have joint pain in my wrist. But I am fine with these side effects they are all minor and very liveable.
I was told by my oncologist's office that now that drug is approved I will be weaned from clinical trial and become just a patient with my oncologist yeah! I was not a fan of the strictness of the trial, the paperwork, and the worry that I could be bumped off it at any time.
It will be great to hear about all the others doing this drug at this time and hear how you are all doing. Take care everyone, stay strong!
laurie from maine 🙂
-
- September 6, 2011 at 2:51 pm
Laurie
After seventeen months on Zelboraf (Vemurafenib), I too still have some of your side effects; a little bit of joint pain (probably just from getting older) and a mild body rash. The skin growths basically stopped several months ago. For me the worst side effect is the sun sensitivity.
I love to garden and have found that I will burn if not protected even one hour before sunset or one hour after sunrise. (Hopefully as we move towards Autumn, that time will increase). I have worked around this by making sure to always wear a wide brim hat and protective clothing. I have a couple of hats I wear but my favorite is a Tilley that is crushable and just tossed in the wash if dirty. For the summer months, I wear a shirt from your neighbor, LL Bean. Their Tropicwear line is good to SPF 50+. If I’m out in the sun between 9:00 and 3:00, clothing is not enough and sunscreen is needed.
Keep up the good results.
Dick
-
- September 6, 2011 at 2:51 pm
Laurie
After seventeen months on Zelboraf (Vemurafenib), I too still have some of your side effects; a little bit of joint pain (probably just from getting older) and a mild body rash. The skin growths basically stopped several months ago. For me the worst side effect is the sun sensitivity.
I love to garden and have found that I will burn if not protected even one hour before sunset or one hour after sunrise. (Hopefully as we move towards Autumn, that time will increase). I have worked around this by making sure to always wear a wide brim hat and protective clothing. I have a couple of hats I wear but my favorite is a Tilley that is crushable and just tossed in the wash if dirty. For the summer months, I wear a shirt from your neighbor, LL Bean. Their Tropicwear line is good to SPF 50+. If I’m out in the sun between 9:00 and 3:00, clothing is not enough and sunscreen is needed.
Keep up the good results.
Dick
-
- September 6, 2011 at 5:38 pm
Hi Dick,
Wow you have made me feel good knowing you have been on it successfully for 17 months that is great! I wonder are their others on here who have been on it that long or longer? I kept hearing from my doctor 8 months more or less.
Thank you for sun tips. I had a nurse tell me about Coolibar line of clothing and sunscreen. I needed to find some light cool gloves for my hands so hopefully they will help.
Thank you
laurie from maine
-
- September 6, 2011 at 5:38 pm
Hi Dick,
Wow you have made me feel good knowing you have been on it successfully for 17 months that is great! I wonder are their others on here who have been on it that long or longer? I kept hearing from my doctor 8 months more or less.
Thank you for sun tips. I had a nurse tell me about Coolibar line of clothing and sunscreen. I needed to find some light cool gloves for my hands so hopefully they will help.
Thank you
laurie from maine
-
- You must be logged in to reply to this topic.