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Il2, side effects and experience

Footstomper
Footstomper Member Posts: 1,237
edited July 2015 in Kidney Cancer #1

Thanks for the opportunity to answer your email most of which would be more helpful in the public forum once we get past the first few statements.

Sam had to go. Buy by the end of he’s regime he had become like a broken insensible lump slowly sucking the life out the club. I cant think of a metaphor to describe his effect, Bilic is young and ambitious with an interesting resume.

Before you attempt Il2 back in England, don’t you need to have held some kind of residency for the NHS? J hope you can get this sorted without too much hassle.

            As for my experience with Il2, I should say that why wife claims I am not a reliable witness.

“Your cancer is spreading aggreassively. Your Cancer can be possibly be cured with a treatment called IL2

Yes we’ll take it.

There will be side effects. There is also the possibility of mortality

I cant remember the numbers and my wife says I was wrong about them anyway. The answer then becomes an obvious no brainer

Perhaps someone else out there can provide accurate figures for mortality and survival

In America, I don’t know about other states, but Maryland says you have il2 in the Intensice care unit. There you are constantly monitored by ICU nurses. These are wonderfuI I wanted an exercise bike and a Molly stole one for me.

            Yes there are horrendous stories, just like there are about the surgery. They are just as accurate and just as useful so not at all. Just trust the professionals they know what doing.  Don’t be BRITISH. THIS IS A POSITION WHERE A STIFF UPPER LIP WILL NOT HELP. IF YOU HURT OR are IN DICOMFORT TELL A MOLLY. ITS PROBABLY NOTHING BUT IT MIGHT NOT BE.  A pain level over 5 gives you access to Morphine.

            As for the actual treatment, as always language gets in the way. I didn’t remember rigours, which dominate his narrative. What I do remember? I got the medicine, shook and shivered and watched some fascinating programmed on PBS. I remember thinking, ‘I can deal with this’ and I did.

            I remember all over undifferented pain and it caused me very little. I RESTED AND FELT Where MY MIND FOCUSED  (USUALLY just in front of my forehead)[I know this sounds kina fuzzy, but I promise you I’m not at all that sort of person. I would then do one of two things dump all my pain in it and remain in my body, or leave all the pain in the body and step out in my own consciousness.

            The nurses kept on tasking if I itched and at the start I wondered what the y were talking about, and then my skin fell off.

The treatment was I week on and 1 week off, then evaluation. My large growths we down 50% the smaller had gone all together.

So it worked.

I went back in October 2013 for another treatment. Everything was as it was before. A week off.

I returned with a bit of a sniveling cold, I received Il2 for 3 days until I had to stop the Il2. It may be the reason while doing my second round I suffered a massive variety of diseases. It was so rare that the Doc is writing a paper on my case. I got pneumonia, pleurisy, septiseamia, and colitis.

            I had to learn to walk before they would let me leave.

Long term effects:     I’m alive

                                    I felt like I was close to dying and appreciate what it is to live and that it’s worth.

                                    I am nowhere as fit as I was but I can function. I foresee my improvement will continue.

                                   

                                    I HAVE CONSTANT debilitating diarrhea

Comments

  • cheatinlil
    cheatinlil Member Posts: 197
    Sorry you are here.  THanks

    Sorry you are here.  THanks for sharing your story :(

  • Footstomper
    Footstomper Member Posts: 1,237

    Sorry you are here.  THanks

    Sorry you are here.  THanks for sharing your story :(

    cheatinlil

    Love your avatar!

    A member of this board posted me about the experience of IL2 and some personal stuff. I have found in the past that our memories are different and comlementary. I therefore answered publicly in the hope that others would also come forward with enough evidence to show that it is fair to be worried about IL2 but not enough to be scared, not enough to justify the fear this disease and treatment engenders.

    I wish others would contribute their eperience of IL2

  • Timbomba
    Timbomba Member Posts: 48

    cheatinlil

    Love your avatar!

    A member of this board posted me about the experience of IL2 and some personal stuff. I have found in the past that our memories are different and comlementary. I therefore answered publicly in the hope that others would also come forward with enough evidence to show that it is fair to be worried about IL2 but not enough to be scared, not enough to justify the fear this disease and treatment engenders.

    I wish others would contribute their eperience of IL2

    Cheers Mate

    Sincere thanks for that and I understand your motives for sharing publicly on here because it may help yet another unfortunate Cancer fighter. 

    Youre right stomper I have to show that I have fully moved back in order to get NHS, it may well be worth it. ....as you say when you have zero choices its a no brainer, right now its still reasonably early for me, which in itself maybe debatable but I have options here in Oz......small nods 6/7mm plus an enlarged Hilar lymph node 1cm....and waiting for more growth so that I can get on this clinical trial sutent vs nivolumab/ipilimumab....which is bloody frustrating because they know its cancer and have told me so...but I have to meet the measuring criteria.

    Plus....and this is where cancer survivors are marvellous, I have input that a certain SBRT/gamma knife is now available to me (brought to Brisbane oct 2014) in a hospital about 10k down the road, yet the Drs at my hospital 5k down the road havent even mentioned it......essentially means I dont necessarily need to lose a lung....If they will treat me with this thing.

    So mate, I have options, crucial at this stage....just have to stay in front of this thing and waiting till they grow bigger so they can formally identify it is bullshit!.....watch this space and thanks again mate.

    Up the Irons....Come on yooooouuuuu Spurs!

    Tim

  • Footstomper
    Footstomper Member Posts: 1,237
    Timbomba said:

    Cheers Mate

    Sincere thanks for that and I understand your motives for sharing publicly on here because it may help yet another unfortunate Cancer fighter. 

    Youre right stomper I have to show that I have fully moved back in order to get NHS, it may well be worth it. ....as you say when you have zero choices its a no brainer, right now its still reasonably early for me, which in itself maybe debatable but I have options here in Oz......small nods 6/7mm plus an enlarged Hilar lymph node 1cm....and waiting for more growth so that I can get on this clinical trial sutent vs nivolumab/ipilimumab....which is bloody frustrating because they know its cancer and have told me so...but I have to meet the measuring criteria.

    Plus....and this is where cancer survivors are marvellous, I have input that a certain SBRT/gamma knife is now available to me (brought to Brisbane oct 2014) in a hospital about 10k down the road, yet the Drs at my hospital 5k down the road havent even mentioned it......essentially means I dont necessarily need to lose a lung....If they will treat me with this thing.

    So mate, I have options, crucial at this stage....just have to stay in front of this thing and waiting till they grow bigger so they can formally identify it is bullshit!.....watch this space and thanks again mate.

    Up the Irons....Come on yooooouuuuu Spurs!

    Tim

    So can you set up a reliable postal address somewhere you'd want

    to be?

    Mine wold have yo be in the middle of the Durham Coalfield. How many times/for how long wound you have to use it to get your bonafides?

  • foxhd
    foxhd Member Posts: 3,181
    Timbomba said:

    Cheers Mate

    Sincere thanks for that and I understand your motives for sharing publicly on here because it may help yet another unfortunate Cancer fighter. 

    Youre right stomper I have to show that I have fully moved back in order to get NHS, it may well be worth it. ....as you say when you have zero choices its a no brainer, right now its still reasonably early for me, which in itself maybe debatable but I have options here in Oz......small nods 6/7mm plus an enlarged Hilar lymph node 1cm....and waiting for more growth so that I can get on this clinical trial sutent vs nivolumab/ipilimumab....which is bloody frustrating because they know its cancer and have told me so...but I have to meet the measuring criteria.

    Plus....and this is where cancer survivors are marvellous, I have input that a certain SBRT/gamma knife is now available to me (brought to Brisbane oct 2014) in a hospital about 10k down the road, yet the Drs at my hospital 5k down the road havent even mentioned it......essentially means I dont necessarily need to lose a lung....If they will treat me with this thing.

    So mate, I have options, crucial at this stage....just have to stay in front of this thing and waiting till they grow bigger so they can formally identify it is bullshit!.....watch this space and thanks again mate.

    Up the Irons....Come on yooooouuuuu Spurs!

    Tim

    my 2 cents

    First of all, if I was called today to come down for more Il-2 treatments, I would be there in a minute. It is worth the chance for a cure. In my case I had no other treatments for over a year as the results gave me  partial response. I also have great trust in the health care system. I believe it will take care of me no matter what.

    With that being said, Il-2 was nearly in-human. 5 inpatient days in icu setting. Unable to eat or sleep for 5 straight days. Constant diarrhea and vomiting. Add a little psychosis, raw inflammed peeling skin, and the rigors. It was a long recovery of several months to return to normal. Who says cancer isn't fun?

    Anyone with the opportunity to recieve Il-2 should not hesitate. If people think they learned about their internal fortitude dealing with a cancer diagnosis, try Il-2. You will find out what you are really made of. Yet I have talked with others who had no issues at all with it. Good luck to all with it on their schedule. It may be like living in hell, but worth the effort.

  • Footstomper
    Footstomper Member Posts: 1,237
    Timbomba said:

    Cheers Mate

    Sincere thanks for that and I understand your motives for sharing publicly on here because it may help yet another unfortunate Cancer fighter. 

    Youre right stomper I have to show that I have fully moved back in order to get NHS, it may well be worth it. ....as you say when you have zero choices its a no brainer, right now its still reasonably early for me, which in itself maybe debatable but I have options here in Oz......small nods 6/7mm plus an enlarged Hilar lymph node 1cm....and waiting for more growth so that I can get on this clinical trial sutent vs nivolumab/ipilimumab....which is bloody frustrating because they know its cancer and have told me so...but I have to meet the measuring criteria.

    Plus....and this is where cancer survivors are marvellous, I have input that a certain SBRT/gamma knife is now available to me (brought to Brisbane oct 2014) in a hospital about 10k down the road, yet the Drs at my hospital 5k down the road havent even mentioned it......essentially means I dont necessarily need to lose a lung....If they will treat me with this thing.

    So mate, I have options, crucial at this stage....just have to stay in front of this thing and waiting till they grow bigger so they can formally identify it is bullshit!.....watch this space and thanks again mate.

    Up the Irons....Come on yooooouuuuu Spurs!

    Tim

    Be Reassured

    Your lumps are still smaller than Spurs chance of winning anythinng so nothing to worry about mate.

  • Footstomper
    Footstomper Member Posts: 1,237
    foxhd said:

    my 2 cents

    First of all, if I was called today to come down for more Il-2 treatments, I would be there in a minute. It is worth the chance for a cure. In my case I had no other treatments for over a year as the results gave me  partial response. I also have great trust in the health care system. I believe it will take care of me no matter what.

    With that being said, Il-2 was nearly in-human. 5 inpatient days in icu setting. Unable to eat or sleep for 5 straight days. Constant diarrhea and vomiting. Add a little psychosis, raw inflammed peeling skin, and the rigors. It was a long recovery of several months to return to normal. Who says cancer isn't fun?

    Anyone with the opportunity to recieve Il-2 should not hesitate. If people think they learned about their internal fortitude dealing with a cancer diagnosis, try Il-2. You will find out what you are really made of. Yet I have talked with others who had no issues at all with it. Good luck to all with it on their schedule. It may be like living in hell, but worth the effort.

    IL2

    I've never met anyone who says, despite everything, they wouldnt do IL2 again at the drop of a hat,

  • Time2luv
    Time2luv Member Posts: 49
    Interlukin 2 side effects for me.

    I did pretty good on Interlukin 2 for a week. Was able to take 13 of scheduled 15 treatments. Turned red, itched some but not too bad, had diahrea for a day or two. Sick at stomach, didn't want to eat. Then my blood pressure dropped bad. They took me off it.

    My vision got REAL bad. Very blurry. Ended up legally blind in one eye but with a great Dr and taking steriods I have vision back to acceptable level. Once off treatment due to low pressure it then went WAY UP! Finally got that under control but no more treatment of Interlukin 2 for me.

    Another women in the hospital at same time I was ended up with kidney failure and was pretty bad. Her doctor talked her into trying another round of treatment. Bad idea for her. She had more very scary side effects. I have been trying to contact her but have not been able to reach her. Not sure if she survived!

    Listen to your body! Don't let a Doctor talk you into something that you feel is not right for you.

    However, if my body would have allowed me to continue on it I would have. It does an amazing job of stopping or reducing growths.

     

     

  • Yeric
    Yeric Member Posts: 65
    IL2. Not me!

    Every now an then my ego gets away from me and I start thinking I'm a tough guy.  Even then that treatment makes me run scared.

    I read about it on Steve Dunn's cancer guide.  At the time a must read for new hobbists like myself.  It was what saved him.  After his passing.  From something mudane.  His friends tried to keep it up.  The last I checked it was returned to the way it was when he passed.  There maybe some information that will help you.  If you haven't already been there.  And if it is still there.

    Bobby

  • Timbomba
    Timbomba Member Posts: 48

    So can you set up a reliable postal address somewhere you'd want

    to be?

    Mine wold have yo be in the middle of the Durham Coalfield. How many times/for how long wound you have to use it to get your bonafides?

    Going Over

    I Have to sell up...show transfer of money...maybe a job?.....to satisfy I have moved....no designated time that I am aware....receipts of selling furniture house etc...fortunately I have a really good mate and family over there that will make the thing easier.....HDIL2 for me is an option but I think I need to see how these first options pan out....i will be going over soon to see the prof. at the CC in mancs. I'd be based in Birmingham.

  • Timbomba
    Timbomba Member Posts: 48

    Be Reassured

    Your lumps are still smaller than Spurs chance of winning anythinng so nothing to worry about mate.

    Lumps

    Lumps...reminds me of Whammers tactics under Big Sam....lump it up to Carroll!!!...oh where is he?? Thats right he's injured ...again :0)

    Mate....keep your eye on Spurs this year.....def.top 4.....

    I guess if the choice between  palliative care and another shot at HDil2....the latter would win every time !!......i hope I dont have to have it.to be honest but you have to stay ahead of this thing...so I will be initiating further enquiries.

  • Timbomba
    Timbomba Member Posts: 48
    Yeric said:

    IL2. Not me!

    Every now an then my ego gets away from me and I start thinking I'm a tough guy.  Even then that treatment makes me run scared.

    I read about it on Steve Dunn's cancer guide.  At the time a must read for new hobbists like myself.  It was what saved him.  After his passing.  From something mudane.  His friends tried to keep it up.  The last I checked it was returned to the way it was when he passed.  There maybe some information that will help you.  If you haven't already been there.  And if it is still there.

    Bobby

    thanks for your info

    Thankyou I will have alook

  • Timbomba
    Timbomba Member Posts: 48
    foxhd said:

    my 2 cents

    First of all, if I was called today to come down for more Il-2 treatments, I would be there in a minute. It is worth the chance for a cure. In my case I had no other treatments for over a year as the results gave me  partial response. I also have great trust in the health care system. I believe it will take care of me no matter what.

    With that being said, Il-2 was nearly in-human. 5 inpatient days in icu setting. Unable to eat or sleep for 5 straight days. Constant diarrhea and vomiting. Add a little psychosis, raw inflammed peeling skin, and the rigors. It was a long recovery of several months to return to normal. Who says cancer isn't fun?

    Anyone with the opportunity to recieve Il-2 should not hesitate. If people think they learned about their internal fortitude dealing with a cancer diagnosis, try Il-2. You will find out what you are really made of. Yet I have talked with others who had no issues at all with it. Good luck to all with it on their schedule. It may be like living in hell, but worth the effort.

    thanks for your info

    appreciated Foxhd.....I'm taking all this onboard

    Tim

  • gthompsonjr
    gthompsonjr Member Posts: 5
    Time2luv said:

    Interlukin 2 side effects for me.

    I did pretty good on Interlukin 2 for a week. Was able to take 13 of scheduled 15 treatments. Turned red, itched some but not too bad, had diahrea for a day or two. Sick at stomach, didn't want to eat. Then my blood pressure dropped bad. They took me off it.

    My vision got REAL bad. Very blurry. Ended up legally blind in one eye but with a great Dr and taking steriods I have vision back to acceptable level. Once off treatment due to low pressure it then went WAY UP! Finally got that under control but no more treatment of Interlukin 2 for me.

    Another women in the hospital at same time I was ended up with kidney failure and was pretty bad. Her doctor talked her into trying another round of treatment. Bad idea for her. She had more very scary side effects. I have been trying to contact her but have not been able to reach her. Not sure if she survived!

    Listen to your body! Don't let a Doctor talk you into something that you feel is not right for you.

    However, if my body would have allowed me to continue on it I would have. It does an amazing job of stopping or reducing growths.

     

     

    Time2Luv IL-2

    Time2Luv what hospital did you have the IL-2 treatments in?

    Thanks.

  • Time2luv
    Time2luv Member Posts: 49

    Time2Luv IL-2

    Time2Luv what hospital did you have the IL-2 treatments in?

    Thanks.

    hospital

    I was at St Vincent in Indianapolis, Indiana.

  • Time2luv
    Time2luv Member Posts: 49
    Time2luv said:

    Interlukin 2 side effects for me.

    I did pretty good on Interlukin 2 for a week. Was able to take 13 of scheduled 15 treatments. Turned red, itched some but not too bad, had diahrea for a day or two. Sick at stomach, didn't want to eat. Then my blood pressure dropped bad. They took me off it.

    My vision got REAL bad. Very blurry. Ended up legally blind in one eye but with a great Dr and taking steriods I have vision back to acceptable level. Once off treatment due to low pressure it then went WAY UP! Finally got that under control but no more treatment of Interlukin 2 for me.

    Another women in the hospital at same time I was ended up with kidney failure and was pretty bad. Her doctor talked her into trying another round of treatment. Bad idea for her. She had more very scary side effects. I have been trying to contact her but have not been able to reach her. Not sure if she survived!

    Listen to your body! Don't let a Doctor talk you into something that you feel is not right for you.

    However, if my body would have allowed me to continue on it I would have. It does an amazing job of stopping or reducing growths.

     

     

    other side effects

    Also had peeling of bottom of feet. Teeth hurt, felt loose but got better over time. Lots of weight gain due to water retention. Fatigue.