› Forums › General Melanoma Community › Hello all! Update on myself!
- This topic has 28 replies, 9 voices, and was last updated 12 years, 8 months ago by chet.
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- July 20, 2011 at 7:11 pm
Hello everyone. It's been a good minute since I've posted anything on here so I thought I would update you on what's been going on with me. Well, I wasn't really a responder to IL-2 so I started Yervoy in June. I'm the first person to receive it in San Antonio so they're watching me very carefully. I'll be getting my third infusion tomorrow morning. So far, so good. I haven't had any crazy symptoms, just the rash, but that is managable. It comes and goes.
Hello everyone. It's been a good minute since I've posted anything on here so I thought I would update you on what's been going on with me. Well, I wasn't really a responder to IL-2 so I started Yervoy in June. I'm the first person to receive it in San Antonio so they're watching me very carefully. I'll be getting my third infusion tomorrow morning. So far, so good. I haven't had any crazy symptoms, just the rash, but that is managable. It comes and goes. I was wondering for the people that were on Yervoy before and responded, about how long did it take to see results? I have no visible melanoma on my skin so I'm not able to monitor my progress. I only have one visible tumor and that's my lymp node right about my left clavicle. I honestly can't tell if it's the same or shrinking. It definately feels a little softer than before but I'm not sure if it's getting smaller. I've been lurking the board and seeing some others are on Yervoy, too. Best of luck to all you guys, y'all are def in my prayers everyday.
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- July 20, 2011 at 11:08 pm
Hi Chet, I've been wondering how you and Kevin (as in 'my name is') are doing. So disappointed to learn that IL-2 was the magic bullet. I did yervoy in Montreal, I actually responded very quickly although I never did have a rash. Having a rash is suposed to be a good thing..are you taking 10 or 3 mg dosage? I was on the 3 mg. My melanoma at that time was cutaneous so I could actually see the response and it was after the first treatment. It worked miracles for those first 4 treatments with my cutaneous mel.. Alas, mel took on another form and became sub-qs and metasticized to lymph node in left groin, so had to look for another treatment after 2 more treatments 3 months later.
I would check out Donna in VT and Jerry in Cape Cod profiles. They have had miraculous responses. All the best, Val
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- July 21, 2011 at 11:11 am
Hi Chet,
I am hoping that you are also a complete responder to Yervoy like I was. Please look at my profile for the time fram on my side effects and response (it was almost immediate and dramatic, but things got bigger before smaller and I did grow new melanomas for part of the treatment but then that stopped). I dont remember the specifics anymore as it has been 8 onths since I started treatment. Right now I am NED and going back to work, so I am happy!
Look for any yervoy or Ipi posts from me, or look at my profile……under Vermont_Donna.
Best of success to you with yervoy!!
Vermont_Donna, syage 3a, NED
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- July 21, 2011 at 11:11 am
Hi Chet,
I am hoping that you are also a complete responder to Yervoy like I was. Please look at my profile for the time fram on my side effects and response (it was almost immediate and dramatic, but things got bigger before smaller and I did grow new melanomas for part of the treatment but then that stopped). I dont remember the specifics anymore as it has been 8 onths since I started treatment. Right now I am NED and going back to work, so I am happy!
Look for any yervoy or Ipi posts from me, or look at my profile……under Vermont_Donna.
Best of success to you with yervoy!!
Vermont_Donna, syage 3a, NED
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- July 20, 2011 at 11:08 pm
Hi Chet, I've been wondering how you and Kevin (as in 'my name is') are doing. So disappointed to learn that IL-2 was the magic bullet. I did yervoy in Montreal, I actually responded very quickly although I never did have a rash. Having a rash is suposed to be a good thing..are you taking 10 or 3 mg dosage? I was on the 3 mg. My melanoma at that time was cutaneous so I could actually see the response and it was after the first treatment. It worked miracles for those first 4 treatments with my cutaneous mel.. Alas, mel took on another form and became sub-qs and metasticized to lymph node in left groin, so had to look for another treatment after 2 more treatments 3 months later.
I would check out Donna in VT and Jerry in Cape Cod profiles. They have had miraculous responses. All the best, Val
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- July 21, 2011 at 2:29 pm
Hey there Chet!!!! ive been wandering how you have been doing with the IL2 treatments. I am so sorry that you were not a responder. I don't know much about Yervoy except that will be my next kind of treatment if my IL2 does not keep mel at bay. Since my 3rd round of IL2 it has completely gotten rid of the 6 in my right clavicle..Which i thought was 3,, my Onc keeps me on a need to know basis which i dont like. I have a small 3mm tumor come up on my 6th rib and a 5mm on my 9th rib. IL2 does keep shrinking my large tumor under my arm but in between each treatment it grows back larger and more aggressive. Now i have small tumors growing on the outside of the skin where that tumor is. So my next step is surgery to remove as much of the tumor as they can and hit me with IL2 again to see if it works and if not they want to change treatments.Its time for my PT but cant get it cause they feel its more important to get the surgery first so that will be put off for another month or so,, I would really like to know if it got rid of the ones on my ribs but i will play the waiting game.The surgeon said he didnt think it would make me live any longer if they take it out but to do it to relieve the pain. But im just going on with myself.. I hope and pray the Yervoy works for you. Im sorry i dont have any answers for you or any advice. But i am so happy to see your post as ive been looking for you on here and wandering how you have been. Best of luck with Yervoy. I pray its your magic bullet., and you become Ned with it. Keep us updated as often as you can. My prayers and thoughts are with you always.. Good luck my friend.
Carol B
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- July 22, 2011 at 12:56 am
Hi Carol! I'm okay with IL-2 not working for me. Well not really, lol, but I know it wasn't all done in vain. My doc was telling me how even though I wasn't a complete responder, it reved up my immune system for the Yervoy. She also mentioned that IL-2 can stay in your system and start working almost a year later, so that made me happy. Praying for you and others everyday!!! Best of luck and I know we will all beat the beast.
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- July 22, 2011 at 12:56 am
Hi Carol! I'm okay with IL-2 not working for me. Well not really, lol, but I know it wasn't all done in vain. My doc was telling me how even though I wasn't a complete responder, it reved up my immune system for the Yervoy. She also mentioned that IL-2 can stay in your system and start working almost a year later, so that made me happy. Praying for you and others everyday!!! Best of luck and I know we will all beat the beast.
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- July 21, 2011 at 2:29 pm
Hey there Chet!!!! ive been wandering how you have been doing with the IL2 treatments. I am so sorry that you were not a responder. I don't know much about Yervoy except that will be my next kind of treatment if my IL2 does not keep mel at bay. Since my 3rd round of IL2 it has completely gotten rid of the 6 in my right clavicle..Which i thought was 3,, my Onc keeps me on a need to know basis which i dont like. I have a small 3mm tumor come up on my 6th rib and a 5mm on my 9th rib. IL2 does keep shrinking my large tumor under my arm but in between each treatment it grows back larger and more aggressive. Now i have small tumors growing on the outside of the skin where that tumor is. So my next step is surgery to remove as much of the tumor as they can and hit me with IL2 again to see if it works and if not they want to change treatments.Its time for my PT but cant get it cause they feel its more important to get the surgery first so that will be put off for another month or so,, I would really like to know if it got rid of the ones on my ribs but i will play the waiting game.The surgeon said he didnt think it would make me live any longer if they take it out but to do it to relieve the pain. But im just going on with myself.. I hope and pray the Yervoy works for you. Im sorry i dont have any answers for you or any advice. But i am so happy to see your post as ive been looking for you on here and wandering how you have been. Best of luck with Yervoy. I pray its your magic bullet., and you become Ned with it. Keep us updated as often as you can. My prayers and thoughts are with you always.. Good luck my friend.
Carol B
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- July 21, 2011 at 3:37 pm
Chet,
We lived in San Antonio for five years, so nice to hear from someone back home!
I'm the first in Delaware to receive Yervoy, it's currently debatable if I'm responding (see my "Horrid News" post). I will know more tomorrow.
We are in it to win it, I know you will have a great response to Yervoy!
It is 91 but feels like 105 here, so it feels just like San Antonio here.
Best of luck, prayers for you and everyone else.
TracyLee
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- July 22, 2011 at 12:58 am
How nice to see someone else from San Antonio:) It's insanely hot and humid, but what's new? lol. I'm sorry to hear the news you just posted. I pray that it's just the Yervoy making it worse before it gets better. It will get better. Seems like we're both the first in our areas to receive Yervoy. Here's to being NED for the both of us and everyone else!
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- July 22, 2011 at 12:58 am
How nice to see someone else from San Antonio:) It's insanely hot and humid, but what's new? lol. I'm sorry to hear the news you just posted. I pray that it's just the Yervoy making it worse before it gets better. It will get better. Seems like we're both the first in our areas to receive Yervoy. Here's to being NED for the both of us and everyone else!
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- July 21, 2011 at 3:37 pm
Chet,
We lived in San Antonio for five years, so nice to hear from someone back home!
I'm the first in Delaware to receive Yervoy, it's currently debatable if I'm responding (see my "Horrid News" post). I will know more tomorrow.
We are in it to win it, I know you will have a great response to Yervoy!
It is 91 but feels like 105 here, so it feels just like San Antonio here.
Best of luck, prayers for you and everyone else.
TracyLee
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- July 21, 2011 at 4:00 pm
Chet,
I've also been wondering how you are doing. I hope that the rash means you are a responder. You sound optimstic which is a good thing.
Thanks for letting us know how you are. We worry about you young guys. Many of us have sons your age.
Linda
Stage IV for 5 years
NED 6 weeks
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- July 22, 2011 at 12:05 am
hi chat,we live in san antonio its my understading that you do to , my husband also has melanoma, we are trying to find a good melanoma , love to hear from you!!!
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- July 22, 2011 at 12:07 am
sorry forgot to write we are looking for melanoma doc
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- July 22, 2011 at 1:02 am
I see Dr. Yuhoe Gia Dice at South Texas Cancer Care Center off Medical. She's great and really gets things done. They weren't going to give me Yervoy but she fought for me and got it. You should consider setting up an appointment with her. Best of luck!
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- July 22, 2011 at 1:02 am
I see Dr. Yuhoe Gia Dice at South Texas Cancer Care Center off Medical. She's great and really gets things done. They weren't going to give me Yervoy but she fought for me and got it. You should consider setting up an appointment with her. Best of luck!
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- July 22, 2011 at 12:07 am
sorry forgot to write we are looking for melanoma doc
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- July 22, 2011 at 12:05 am
hi chat,we live in san antonio its my understading that you do to , my husband also has melanoma, we are trying to find a good melanoma , love to hear from you!!!
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- July 21, 2011 at 4:00 pm
Chet,
I've also been wondering how you are doing. I hope that the rash means you are a responder. You sound optimstic which is a good thing.
Thanks for letting us know how you are. We worry about you young guys. Many of us have sons your age.
Linda
Stage IV for 5 years
NED 6 weeks
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