› Forums › General Melanoma Community › starting Zelboraf in a few days
- This topic has 12 replies, 4 voices, and was last updated 12 years ago by
Kellie-T.
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- April 4, 2012 at 4:04 pm
My primary was in 1995, after 10 years of dermatologist screenings (and no recurrences) i never gave it another thought. Last spring i found a swollen lymph node near my groin and my PC had the good foresight to have scans run. June 30th, same day I retired, i had 17 lymph nodes removed from my right inguinal area and upper thigh on my right leg. only one was malignant but there was extension outside the node. i was tested for the BRAF mutation and i haveit.
My primary was in 1995, after 10 years of dermatologist screenings (and no recurrences) i never gave it another thought. Last spring i found a swollen lymph node near my groin and my PC had the good foresight to have scans run. June 30th, same day I retired, i had 17 lymph nodes removed from my right inguinal area and upper thigh on my right leg. only one was malignant but there was extension outside the node. i was tested for the BRAF mutation and i haveit. I did radiation in september and then 10 Interferon IV treatments in November and my oncologist and i both agreed after 3 weeks it was taking too much of a toll on my body, by the 10th treatment i couldn't force more than a couple of glasses of water down a day.
about two weeks ago I developed a dry cough, after a week of that my PC (again) sent me right out for a chest xray and a wet read, came back as multiple masses/nodules in my lungs. saw my medical oncologist two days later and he set me up with Zelboraf, then had my radiation oncologists (who's done IGRT for prostate cancer for me and high dose radation on the area where my lymph nodes were removed last september). The top lobe of my left lung is partially collapsed and i have one node that's about 3 centimeters blocking an airway. I'm starting radiation today for that node to improve my breathing. I haven't gotten a call from the speciality pharamacy yet, yesterday my medical oncologist said he'd "lean on them" – i'm guessing teh hold up is because I have double coverage (thank God i kept my health insureance going after i retired).
I'll post more as this plays out. I'm optimistic about the Zelboraf and know there are several other drugs available if my cancer becomes resistant. sure not how i envisioned retirement tho. if you pray, i'd sure be grateful for prayers. this has stunned my whole family – which has since day one declared we're all in this together. I have a great support system, am in otherwise good health, have lots to look forward to, including a trip to Kenya this summer to visit our youngest son who's in the Peace Corps in Kenya. thank you.
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- April 4, 2012 at 5:03 pm
I am so sorry to hear of your recent diagnosis. But there is hope as Zelboraf is a great drug! My son has been on it since Friday of last week and he already feels so much better. I hope you will too. My prayers are with you, and I wish good luck. Keep us informed of your progress – this board is the best 🙂
Jeff's Mom
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- April 4, 2012 at 5:03 pm
I am so sorry to hear of your recent diagnosis. But there is hope as Zelboraf is a great drug! My son has been on it since Friday of last week and he already feels so much better. I hope you will too. My prayers are with you, and I wish good luck. Keep us informed of your progress – this board is the best 🙂
Jeff's Mom
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- April 4, 2012 at 5:03 pm
I am so sorry to hear of your recent diagnosis. But there is hope as Zelboraf is a great drug! My son has been on it since Friday of last week and he already feels so much better. I hope you will too. My prayers are with you, and I wish good luck. Keep us informed of your progress – this board is the best 🙂
Jeff's Mom
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- April 4, 2012 at 6:42 pm
Good thing you will be on Zelboraf.Hopefully you will see results surprisingly quick.I definitely wiil keep you in my prayers.Keep us posted.You have a trip to Kenya to make which is comming soon. Al
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- April 4, 2012 at 6:42 pm
Good thing you will be on Zelboraf.Hopefully you will see results surprisingly quick.I definitely wiil keep you in my prayers.Keep us posted.You have a trip to Kenya to make which is comming soon. Al
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- April 4, 2012 at 6:42 pm
Good thing you will be on Zelboraf.Hopefully you will see results surprisingly quick.I definitely wiil keep you in my prayers.Keep us posted.You have a trip to Kenya to make which is comming soon. Al
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- April 5, 2012 at 12:13 am
My husband has been on Zelboraf since October and is doing great. He had a palpable tumor on his neck when he started and within 4 days it was noticeably smaller and within 2 weeks it was completely gone. Be careful because you cannot have radiation while on Zelboraf…it can cause horrible burns. So make sure to finish that before starting. When my husband had gamma knife, he had to be off 3 days before and 3 days after. His doctor said for regular radiation he would pull him off at least 5 days each side of the radiation.
Side effects are tough, but manageable when you find the dosage that works for you…my husband is on 6 pills a day instead of 8 and had his first stable scan in February. He struggles some days but for the most part can do what he wants. -
- April 5, 2012 at 12:13 am
My husband has been on Zelboraf since October and is doing great. He had a palpable tumor on his neck when he started and within 4 days it was noticeably smaller and within 2 weeks it was completely gone. Be careful because you cannot have radiation while on Zelboraf…it can cause horrible burns. So make sure to finish that before starting. When my husband had gamma knife, he had to be off 3 days before and 3 days after. His doctor said for regular radiation he would pull him off at least 5 days each side of the radiation.
Side effects are tough, but manageable when you find the dosage that works for you…my husband is on 6 pills a day instead of 8 and had his first stable scan in February. He struggles some days but for the most part can do what he wants. -
- April 5, 2012 at 12:13 am
My husband has been on Zelboraf since October and is doing great. He had a palpable tumor on his neck when he started and within 4 days it was noticeably smaller and within 2 weeks it was completely gone. Be careful because you cannot have radiation while on Zelboraf…it can cause horrible burns. So make sure to finish that before starting. When my husband had gamma knife, he had to be off 3 days before and 3 days after. His doctor said for regular radiation he would pull him off at least 5 days each side of the radiation.
Side effects are tough, but manageable when you find the dosage that works for you…my husband is on 6 pills a day instead of 8 and had his first stable scan in February. He struggles some days but for the most part can do what he wants. -
- April 5, 2012 at 11:53 pm
I've been on Zelboraf since February 14th. I too had a primary mole removed in 2006 and then it showed up in my lymph nodes in my left groin in 2010. I'm on 6 pills a day and seem to be doing okay with it. I get scanned in a few weeks so crossing my fingers that it's working. Steer clear of the sun. If you have to be out in it stay covered up. You will get burned quickly and severe. Wishing you all the best. One day at a time.
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- April 5, 2012 at 11:53 pm
I've been on Zelboraf since February 14th. I too had a primary mole removed in 2006 and then it showed up in my lymph nodes in my left groin in 2010. I'm on 6 pills a day and seem to be doing okay with it. I get scanned in a few weeks so crossing my fingers that it's working. Steer clear of the sun. If you have to be out in it stay covered up. You will get burned quickly and severe. Wishing you all the best. One day at a time.
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- April 5, 2012 at 11:53 pm
I've been on Zelboraf since February 14th. I too had a primary mole removed in 2006 and then it showed up in my lymph nodes in my left groin in 2010. I'm on 6 pills a day and seem to be doing okay with it. I get scanned in a few weeks so crossing my fingers that it's working. Steer clear of the sun. If you have to be out in it stay covered up. You will get burned quickly and severe. Wishing you all the best. One day at a time.
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