› Forums › General Melanoma Community › When You Do IL2
- This topic has 15 replies, 4 voices, and was last updated 8 years, 4 months ago by
jennunicorn.
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- May 3, 2016 at 2:40 am
It is almost an out of body experience.
Getting the central line shoved down your neck to start is the first insult.
That is far from the first funjet though.
When they hang that first bag of aldesleukin brought up from the lab by security because the price tag is a tick more than 7 grand,a copy; well, you know this ride is not going to be cheap, let alone easy.
Then it starts to kick your ass with a soft shoe.
The first sensation is a sort of chemical thing that hits the brain that tells you there are drugs coming into your body.
Then your body starts to tell your brain that yes, you are under the influence of toxic chemicals; and in response your brain says "yeah, I know that"
It is a strange sensation..
I want no judgement posts about what I am doing right now nor sympathy.
I'm just reporting what is the start of one bag every eight hours of my choice to start………again.
Melanoma is not for sissies.
Cheers,
Charlie S
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- May 3, 2016 at 2:58 am
Sending you good vibes and positivity while you go through this intense treatment. You've done this before so you must be one strong guy. You'll get through this and kick melanoma's butt again!
May I ask why you chose to do this treatment again rather than a newer option?
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- May 4, 2016 at 1:30 am
Yes, you may ask and I am glad you did.
My personal viewpoint of melanoma has always been one of disease management; surgery, structured with some sort of adjuvant approach.
My belief has always been that there would be a structured approach in the future that would employ an "innate" ( immune systerm) remedy for melanoma that …………..even way back in 1987 when I did a clinical trial of lax cell therapy which was a rudimentary attempt at immunotherapy. I believed that then and I believe it now.
That being said, IL2 (which is immunotherapy) eliminated stage IV melanoma inside of me for 8 years .
I simply think it "wore off" for lack of a better term; and since it worked once, who is to say it would not work twice?
My decision was not based on a stubborn and and blind belief of a singular treatment approach from 8 years ago working today though.
My plan is to do IL2 and follow it with Opdivo There are several " sort of" trials dancing with this, but I do not want a trial right now.
Not one oncologist (and I spoke with seven of them) could give me any reason that this approach is wrong, risky or ill-advised.
All said they would prescribe IL2 and after 8 weeks would prescribe Opdivo if I met the criteria.
Off the record, they ALL said IL2 should only increase the chance of Opdivo working better and vice versa .
Off the record. I emphasize again…………..off the record.
And yeah, yeah, yeah, I get the combo with yervoy approved approach, but that does not speak to me,
Because of my documented medical history and becuase I can be quite plucky( okay nice word for what rhymes with slick) with any doctor of any stripe, I tend to take the approach of…………………."Okay, what can I NOT do?"
Not one medical professional said I can not take this approach (they all said it is not best practise and they could not advise other patients to do so ), but agreed that because it is my chances, it is my choice and green lighted my plan.
So, there ya go……………….that is my why.
In my mind, it is important not to throw out the baby with the bathwater……………………new advances are good, but just because it is an advance does not always mean it is the singular way forward for every body and a reason to disregard the past.
I always remember that historically ,one of the most confounding and continuing aspects of melanoma treatment is: What works for one does not always work for another.
I'm all in on that this will work for me.
And if it doesn't? Well crap, none of us are getting out of here alive anyway.
That's my story and I'm stickin' to it.
Cheers,
Charlie S
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- May 4, 2016 at 2:31 am
Thank you for your explanation. It makes total sense and I really don't blame you for going for it.
Hoping for nothing but good results for you!
All the best,
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- May 4, 2016 at 2:31 am
Thank you for your explanation. It makes total sense and I really don't blame you for going for it.
Hoping for nothing but good results for you!
All the best,
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- May 4, 2016 at 2:31 am
Thank you for your explanation. It makes total sense and I really don't blame you for going for it.
Hoping for nothing but good results for you!
All the best,
-
- May 4, 2016 at 1:30 am
Yes, you may ask and I am glad you did.
My personal viewpoint of melanoma has always been one of disease management; surgery, structured with some sort of adjuvant approach.
My belief has always been that there would be a structured approach in the future that would employ an "innate" ( immune systerm) remedy for melanoma that …………..even way back in 1987 when I did a clinical trial of lax cell therapy which was a rudimentary attempt at immunotherapy. I believed that then and I believe it now.
That being said, IL2 (which is immunotherapy) eliminated stage IV melanoma inside of me for 8 years .
I simply think it "wore off" for lack of a better term; and since it worked once, who is to say it would not work twice?
My decision was not based on a stubborn and and blind belief of a singular treatment approach from 8 years ago working today though.
My plan is to do IL2 and follow it with Opdivo There are several " sort of" trials dancing with this, but I do not want a trial right now.
Not one oncologist (and I spoke with seven of them) could give me any reason that this approach is wrong, risky or ill-advised.
All said they would prescribe IL2 and after 8 weeks would prescribe Opdivo if I met the criteria.
Off the record, they ALL said IL2 should only increase the chance of Opdivo working better and vice versa .
Off the record. I emphasize again…………..off the record.
And yeah, yeah, yeah, I get the combo with yervoy approved approach, but that does not speak to me,
Because of my documented medical history and becuase I can be quite plucky( okay nice word for what rhymes with slick) with any doctor of any stripe, I tend to take the approach of…………………."Okay, what can I NOT do?"
Not one medical professional said I can not take this approach (they all said it is not best practise and they could not advise other patients to do so ), but agreed that because it is my chances, it is my choice and green lighted my plan.
So, there ya go……………….that is my why.
In my mind, it is important not to throw out the baby with the bathwater……………………new advances are good, but just because it is an advance does not always mean it is the singular way forward for every body and a reason to disregard the past.
I always remember that historically ,one of the most confounding and continuing aspects of melanoma treatment is: What works for one does not always work for another.
I'm all in on that this will work for me.
And if it doesn't? Well crap, none of us are getting out of here alive anyway.
That's my story and I'm stickin' to it.
Cheers,
Charlie S
.
-
- May 4, 2016 at 1:30 am
Yes, you may ask and I am glad you did.
My personal viewpoint of melanoma has always been one of disease management; surgery, structured with some sort of adjuvant approach.
My belief has always been that there would be a structured approach in the future that would employ an "innate" ( immune systerm) remedy for melanoma that …………..even way back in 1987 when I did a clinical trial of lax cell therapy which was a rudimentary attempt at immunotherapy. I believed that then and I believe it now.
That being said, IL2 (which is immunotherapy) eliminated stage IV melanoma inside of me for 8 years .
I simply think it "wore off" for lack of a better term; and since it worked once, who is to say it would not work twice?
My decision was not based on a stubborn and and blind belief of a singular treatment approach from 8 years ago working today though.
My plan is to do IL2 and follow it with Opdivo There are several " sort of" trials dancing with this, but I do not want a trial right now.
Not one oncologist (and I spoke with seven of them) could give me any reason that this approach is wrong, risky or ill-advised.
All said they would prescribe IL2 and after 8 weeks would prescribe Opdivo if I met the criteria.
Off the record, they ALL said IL2 should only increase the chance of Opdivo working better and vice versa .
Off the record. I emphasize again…………..off the record.
And yeah, yeah, yeah, I get the combo with yervoy approved approach, but that does not speak to me,
Because of my documented medical history and becuase I can be quite plucky( okay nice word for what rhymes with slick) with any doctor of any stripe, I tend to take the approach of…………………."Okay, what can I NOT do?"
Not one medical professional said I can not take this approach (they all said it is not best practise and they could not advise other patients to do so ), but agreed that because it is my chances, it is my choice and green lighted my plan.
So, there ya go……………….that is my why.
In my mind, it is important not to throw out the baby with the bathwater……………………new advances are good, but just because it is an advance does not always mean it is the singular way forward for every body and a reason to disregard the past.
I always remember that historically ,one of the most confounding and continuing aspects of melanoma treatment is: What works for one does not always work for another.
I'm all in on that this will work for me.
And if it doesn't? Well crap, none of us are getting out of here alive anyway.
That's my story and I'm stickin' to it.
Cheers,
Charlie S
.
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- May 3, 2016 at 2:58 am
Sending you good vibes and positivity while you go through this intense treatment. You've done this before so you must be one strong guy. You'll get through this and kick melanoma's butt again!
May I ask why you chose to do this treatment again rather than a newer option?
-
- May 3, 2016 at 2:58 am
Sending you good vibes and positivity while you go through this intense treatment. You've done this before so you must be one strong guy. You'll get through this and kick melanoma's butt again!
May I ask why you chose to do this treatment again rather than a newer option?
-
- May 3, 2016 at 6:21 pm
Melanoma is not for sissies. I second that. So keep kicking @ss, my friend! -
- May 3, 2016 at 6:21 pm
Melanoma is not for sissies. I second that. So keep kicking @ss, my friend! -
- May 3, 2016 at 6:21 pm
Melanoma is not for sissies. I second that. So keep kicking @ss, my friend!
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