› Forums › General Melanoma Community › Opdivo, Yervoy and Zelboraf at the same time?
- This topic has 18 replies, 4 voices, and was last updated 7 years, 8 months ago by KAF.
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- July 14, 2016 at 1:04 am
Hi all
Im very new here. I was diagnosed with stage IV melanoma at the end of May. It originated on my labia (I've had mole checks for years since the 90's but never had been checked there). I'm scheduled for my 3rd dose of the Opdivo/Yervoy combo on Tuesday. Had only a rash and fatigue after the first dose and have felt amazing after the 2nd dose (could be because after being hypothyroid my whole life I'm now hyperthyroid and the amount of energy I have is crazy). Anyway, the one problem I'm having is that after having the tumor removed it's starting to reappear and now I have black dots all over both sides of my labia. My doc said that if I'm really uncomfortable that she could start me on zelvoraf next week. She's concerned though about the side affects with all these drugs in my system. Has anyone else done zelboraf on top of the opdivo/yervoy? If it's just the spreading I'm seeing should I just let it spread until my next scans?
Thanks. Karen
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- July 14, 2016 at 2:53 pm
Hello Karen
I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.
Did you by chance use tanning beds?
Tom
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- July 14, 2016 at 2:53 pm
Hello Karen
I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.
Did you by chance use tanning beds?
Tom
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- July 14, 2016 at 3:51 pm
Hi Tom,
I did read the report about tanning beds. I used them maybe 10 times at most. A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning. Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid. I don't even think sunscreen was even around in the mid 70's was it? I used to love swimming and canoeing and got horrible burns multiple times. I was even a lifeguard in college.
I'm hoping for positive results after the 4 doses. Just seeing it spread makes me scared of what its doing on the inside. It had spread to my liver but I hate to think its spreading to my lungs next.
Karen
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- July 14, 2016 at 4:26 pm
When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.
Good luck to you
Tom
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- July 14, 2016 at 4:26 pm
When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.
Good luck to you
Tom
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- July 14, 2016 at 4:26 pm
When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.
Good luck to you
Tom
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- July 14, 2016 at 3:51 pm
Hi Tom,
I did read the report about tanning beds. I used them maybe 10 times at most. A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning. Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid. I don't even think sunscreen was even around in the mid 70's was it? I used to love swimming and canoeing and got horrible burns multiple times. I was even a lifeguard in college.
I'm hoping for positive results after the 4 doses. Just seeing it spread makes me scared of what its doing on the inside. It had spread to my liver but I hate to think its spreading to my lungs next.
Karen
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- July 14, 2016 at 3:51 pm
Hi Tom,
I did read the report about tanning beds. I used them maybe 10 times at most. A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning. Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid. I don't even think sunscreen was even around in the mid 70's was it? I used to love swimming and canoeing and got horrible burns multiple times. I was even a lifeguard in college.
I'm hoping for positive results after the 4 doses. Just seeing it spread makes me scared of what its doing on the inside. It had spread to my liver but I hate to think its spreading to my lungs next.
Karen
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- July 14, 2016 at 2:53 pm
Hello Karen
I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.
Did you by chance use tanning beds?
Tom
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- July 15, 2016 at 1:33 am
Do you carry the B-raf mutation? Just wondering since much more rare with mucosal mel. If no, then B-raf won't do anything for your melanoma but increase side effects.
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- July 15, 2016 at 10:01 pm
Hi Karen,
I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!
I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…
Hang in & know you're not alone!
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- July 15, 2016 at 10:01 pm
Hi Karen,
I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!
I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…
Hang in & know you're not alone!
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- July 15, 2016 at 10:01 pm
Hi Karen,
I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!
I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…
Hang in & know you're not alone!
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Tagged: cutaneous melanoma
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