› Forums › General Melanoma Community › Starting IL-2 Soon..
- This topic has 39 replies, 15 voices, and was last updated 11 years, 8 months ago by
mhensley1.
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- January 9, 2011 at 9:39 pm
Hello everyone.
Hello everyone.
Let me introduce myself. My name is Chet, 25yo, and I'm from Austin, Texas. I've been browsing the forum since I was diagnosed last month (December 15, 2010) and after reading so many of your stories it has given me so much hope. I was diagnosed with stage IV melanoma and I'm finally going to start treatment w/ IL-2 in about a week (Jan. 17). Truth be told, I'm scared of the side effects but since I know so many of you have braved this, I know I can do it, too. I pray, pray, pray that this is successful for me. I fall under the rare case that I'm Asian with this cancer, being that we only account for 2% of the melanoma population. The doctors didn't find the primary spot, but we do know that there are 2 small nodules, one pressed upon my kidney and the other pressed upon my secum, and the swollen lymph node above my left collar bone that they biopsied had melanoma cells. I had a petscan about 2 weeks ago and they only showed activity in those 3 areas. I pray it stays contained until I start treatment and this horrible nightmare just goes away. I will keep you guys posted on how my treatment goes. If there is anyone that can shoot me some advice as to what to expect or should prepare for while going through this it would be greatly appreciated.
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- January 9, 2011 at 9:59 pm
Chet,
I'd like to welcome you to the board, however, I am so sorry you've had to join us. I've not done IL2 but we have several who have that can give you tips. Jane has come up with a tip sheet that is often shared. I'm listing the link to her site. http://www.operationsunshield.org/
You also might want to do a search for hisnameiskevin. He is your age and recently did IL2 so he might be someone that you would feel comfortable relating to.
Are you being treated at MDA ?
Wishing you the best for a complete response to IL2!
Linda
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- January 9, 2011 at 9:59 pm
Chet,
I'd like to welcome you to the board, however, I am so sorry you've had to join us. I've not done IL2 but we have several who have that can give you tips. Jane has come up with a tip sheet that is often shared. I'm listing the link to her site. http://www.operationsunshield.org/
You also might want to do a search for hisnameiskevin. He is your age and recently did IL2 so he might be someone that you would feel comfortable relating to.
Are you being treated at MDA ?
Wishing you the best for a complete response to IL2!
Linda
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- January 9, 2011 at 10:03 pm
Hi Chet,
It's kind of quiet around here on the weekend, but a really great reference is Jane's Operation Sunshield site. http://www.operationsunshield.org/> My
My husband Bob was diagnosed with Stage IV in April 2008 with lung tumors. I emailed Jane and she was a wonderful resource and her tips really helped us get through it. The IL-2 took care of his lung tumors, he did have a reoccurrence but he has been NED (no evidence of disease) for 18 months now.
The best advice is to have someone with you even if they have to sleep in the uncomfortable chair in the room, it helps because there will be many times you will not feel like calling the nurse yourself. You need someone who will get you blankets when your cold and they need to make sure you keep drinking water. Check out the tip sheet because I could rattle off a bunch of stuff, but Jane's got it covered.
Good luck with your treatment and you have found a good place to come and talk.
Rebecca
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- January 9, 2011 at 10:03 pm
Hi Chet,
It's kind of quiet around here on the weekend, but a really great reference is Jane's Operation Sunshield site. http://www.operationsunshield.org/> My
My husband Bob was diagnosed with Stage IV in April 2008 with lung tumors. I emailed Jane and she was a wonderful resource and her tips really helped us get through it. The IL-2 took care of his lung tumors, he did have a reoccurrence but he has been NED (no evidence of disease) for 18 months now.
The best advice is to have someone with you even if they have to sleep in the uncomfortable chair in the room, it helps because there will be many times you will not feel like calling the nurse yourself. You need someone who will get you blankets when your cold and they need to make sure you keep drinking water. Check out the tip sheet because I could rattle off a bunch of stuff, but Jane's got it covered.
Good luck with your treatment and you have found a good place to come and talk.
Rebecca
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- January 9, 2011 at 11:12 pm
Damn Chet…I am so sorry this dreaded disease has gotten a hold of you. I hope your treatments are successful at ridding it from your body and you can get on with having a long, happy, healthy, and productive life.Keep us posted on your progress, and stay positive. I will be hoping and praying for you.
YOU WILL BEAT THIS!
Regards,
Mark (Stage 2A) from California -
- January 9, 2011 at 11:12 pm
Damn Chet…I am so sorry this dreaded disease has gotten a hold of you. I hope your treatments are successful at ridding it from your body and you can get on with having a long, happy, healthy, and productive life.Keep us posted on your progress, and stay positive. I will be hoping and praying for you.
YOU WILL BEAT THIS!
Regards,
Mark (Stage 2A) from California -
- January 9, 2011 at 11:36 pm
Chet…
I am a Complete Responder to IL-2. If you would like to talk … ask questions, I would be happy to help you.
Contact me at [email protected] Wishing you the best.
Debbie Stage 4 NED
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- January 9, 2011 at 11:36 pm
Chet…
I am a Complete Responder to IL-2. If you would like to talk … ask questions, I would be happy to help you.
Contact me at [email protected] Wishing you the best.
Debbie Stage 4 NED
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- January 10, 2011 at 12:40 am
Chet,
Unless you're in a hospital with a really good dietary dept., the suggestion about having somebody with you some of the time extends to having them bring you some take out. I had 2 courses/4 cycles of IL2 this past summer and the food was at times very bland, and often lukewarm by the time it made it to me. When I was feeling nauseous, it was especially hard to motivate myself to try to eat. The beset meals I had were take-out brought in for me from the outside.
Also I preferred my own water supply to the tap/ice-water they were serving me. May just be personal preference. But in making sure I drank enough, having some spring water was nice. They'll likely be measuring your output (pee into a bottle) to make sure you're drinking enough.
As many times as you're up to it, try go motivate yourself to do walking laps around the ward with the IV pole as much as you can. It helps keep the GI tract moving.
Hang in there. The IL2 treatment can work. And it is also a gateway step to many clinical trials.
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- January 10, 2011 at 12:40 am
Chet,
Unless you're in a hospital with a really good dietary dept., the suggestion about having somebody with you some of the time extends to having them bring you some take out. I had 2 courses/4 cycles of IL2 this past summer and the food was at times very bland, and often lukewarm by the time it made it to me. When I was feeling nauseous, it was especially hard to motivate myself to try to eat. The beset meals I had were take-out brought in for me from the outside.
Also I preferred my own water supply to the tap/ice-water they were serving me. May just be personal preference. But in making sure I drank enough, having some spring water was nice. They'll likely be measuring your output (pee into a bottle) to make sure you're drinking enough.
As many times as you're up to it, try go motivate yourself to do walking laps around the ward with the IV pole as much as you can. It helps keep the GI tract moving.
Hang in there. The IL2 treatment can work. And it is also a gateway step to many clinical trials.
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- January 10, 2011 at 1:37 am
Chet,
I am so sorry to hear about your diagnosis. No one your age should have to face what you are facing, but the good news is that you are young and there are new treatments and trials that hold real promise. When I was first diagnosed as Stage III in 2001, there wasn't much that they could do.
For the last two years, I have been stage IV with operable subcutaneous tumors. But the new ones are not operable and I am facing IL-2 as well. I logged on tonight to post a request for information and advice and found your post. So I will be reading carefully all the advice that is posted here for you. Thanks everyone for your help.
One thing that I have found very helpful is to collect positive quotes that you like (I have a whole set from a wonderful book by Cheryl Dal Porto called "Shaking Hands with Cancer and Coming Out Fighting). I have printed them on colorful pieces of paper and read one each night before I go to sleep. Focusing on that positive thought really helps in so many ways.
Here is one I like: Cancer can cut your life short. So can automobile accidents, fatal heart attacks, drowning, homicide, earthquakes, childhood diseases, starvation. BUT with cancer, you usually get a chance to fight.
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- January 10, 2011 at 1:37 am
Chet,
I am so sorry to hear about your diagnosis. No one your age should have to face what you are facing, but the good news is that you are young and there are new treatments and trials that hold real promise. When I was first diagnosed as Stage III in 2001, there wasn't much that they could do.
For the last two years, I have been stage IV with operable subcutaneous tumors. But the new ones are not operable and I am facing IL-2 as well. I logged on tonight to post a request for information and advice and found your post. So I will be reading carefully all the advice that is posted here for you. Thanks everyone for your help.
One thing that I have found very helpful is to collect positive quotes that you like (I have a whole set from a wonderful book by Cheryl Dal Porto called "Shaking Hands with Cancer and Coming Out Fighting). I have printed them on colorful pieces of paper and read one each night before I go to sleep. Focusing on that positive thought really helps in so many ways.
Here is one I like: Cancer can cut your life short. So can automobile accidents, fatal heart attacks, drowning, homicide, earthquakes, childhood diseases, starvation. BUT with cancer, you usually get a chance to fight.
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- January 10, 2011 at 6:05 am
Thank you all for responding and for your kind words of encouragement! I had to take a leave of absence, and so today was my last day of work (for a while) and it was bitter sweet. Everyone was sad to see me go but they're all hopeful for me. I'm going to use this week before treatment to have a little normalcy and spend some quality time with family and friends before I go into battle mode. It's so weird that I have never met any of you guys, yet I feel this connection with y'all:) We'll beat this thing together.
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- January 10, 2011 at 2:13 pm
Dear Chet,
So sorry that you have had a stage 4 melanoma diagnosis, BUT you have come to the right place for information and support. Best of luck in your treatments and I will pray that you are a total responder!
Vermont_Donna
stage 3a
currently doing ipi
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- January 10, 2011 at 3:12 pm
Chet
My 22 yr old son has melanoma and I can't tell you how much I HATE seeing young people have to go through this! The good thing is, being yound and stong will help you get though the treatments, Please check back in to keep us updated. Once you post here, we can we like a bunch of mother (and father) hens who will worry unless they hear from you.
Becky
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- January 10, 2011 at 3:12 pm
Chet
My 22 yr old son has melanoma and I can't tell you how much I HATE seeing young people have to go through this! The good thing is, being yound and stong will help you get though the treatments, Please check back in to keep us updated. Once you post here, we can we like a bunch of mother (and father) hens who will worry unless they hear from you.
Becky
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- January 10, 2011 at 2:13 pm
Dear Chet,
So sorry that you have had a stage 4 melanoma diagnosis, BUT you have come to the right place for information and support. Best of luck in your treatments and I will pray that you are a total responder!
Vermont_Donna
stage 3a
currently doing ipi
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- January 11, 2011 at 12:59 am
You have a great attitude. I am impressed, I will keep my fingers crossed that this will do the trick for you. As a side note, since you are young, I think you should just assume you will make it and get your life back completely.If you read Lance Armstrong's book you will see that he went through a lot including banking sperm. I don't know if IL2 will cause you to be neutered chemically. But, it is definitely a good idea. Some day you may meet the girl of your dreams and want to have kids. I'm sure at age 25 you are probably thinking the same thing I was, but trust me, It is a good thing to do.
Best,
John
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- January 11, 2011 at 12:59 am
You have a great attitude. I am impressed, I will keep my fingers crossed that this will do the trick for you. As a side note, since you are young, I think you should just assume you will make it and get your life back completely.If you read Lance Armstrong's book you will see that he went through a lot including banking sperm. I don't know if IL2 will cause you to be neutered chemically. But, it is definitely a good idea. Some day you may meet the girl of your dreams and want to have kids. I'm sure at age 25 you are probably thinking the same thing I was, but trust me, It is a good thing to do.
Best,
John
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- January 10, 2011 at 6:05 am
Thank you all for responding and for your kind words of encouragement! I had to take a leave of absence, and so today was my last day of work (for a while) and it was bitter sweet. Everyone was sad to see me go but they're all hopeful for me. I'm going to use this week before treatment to have a little normalcy and spend some quality time with family and friends before I go into battle mode. It's so weird that I have never met any of you guys, yet I feel this connection with y'all:) We'll beat this thing together.
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- January 11, 2011 at 2:27 am
Good Luck with treatment Chet!
I am diagnosed with stage 4 melanoma and for 8 months now I have no evidence of diease…Lynn
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- January 12, 2011 at 4:29 am
Hey Chet. I was in your same exact position a few months ago. Just turned 26, great girlfriend, everything was good and great, then they told told me the same. Stage IV melanoma. Scary words and hard believe at first, life was suddenly flipped upside down…but like me, you're in a good place here with a lot knowledgeable people, this board really helped me a lot, in many ways. I did IL-2 in September. Unfortunately, it didn't work for me, but you know, that increases the odds it'll work for you. Which is good. It seems you've been given quite bit of info in your replies but If you have any questions or anything feel free to contact me.
Stay focused and positive.
Wishing the best for you. -Kevin
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- January 12, 2011 at 4:29 am
Hey Chet. I was in your same exact position a few months ago. Just turned 26, great girlfriend, everything was good and great, then they told told me the same. Stage IV melanoma. Scary words and hard believe at first, life was suddenly flipped upside down…but like me, you're in a good place here with a lot knowledgeable people, this board really helped me a lot, in many ways. I did IL-2 in September. Unfortunately, it didn't work for me, but you know, that increases the odds it'll work for you. Which is good. It seems you've been given quite bit of info in your replies but If you have any questions or anything feel free to contact me.
Stay focused and positive.
Wishing the best for you. -Kevin
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- January 17, 2011 at 1:27 am
I'm going in tomorrow morning guys. Been alright this week up until now. I'm a nervous wreck! I'll let y'all know how everything goes after week one.
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