Advice - Interluken

Family member will be starting interluken treatment.  Looking for advice for both the patient and the family.  Are there foods that help the patient go thru the treatment?  foods they should stay away from? during the treatment? after the treatment? How can the family help the patient?  We know the side effects can be difficult.  Any suggestions on how to minimize them? Any and all advice is most welcome as we face this challenge.

Thank you and God Bless.

Hi,

Back in 2002, I went through 5 IL2/Bay50 treatments fron March thru September in a clinical trial. Had my left kidney removed in Dec, 2001. My dosage was 2 injections per day over 7 days in ICU at Dartmouth-Hitchcock in NH.

The first 14 injections were not bad. Only a rash on my chest. After a weeks break I went in for the second weeks treatment. IL2 has "memory" so the side effects came back quickly: mainly skin problems,itching and rash and nausea. It gets more challenging as the treatment progresses.

The one thing I learned that after two treatments, do not take a shower! It only heightened the itching and peeling. Keep plenty of body lotion on hand. Taking baths with the stuff for poison ivy helped me.

I had no limitation on diet at home or in the ICU. The combination IL2 and Bay 50 present slightly less acute side effects but still were a challenge. It worked for me by keeping my lung nodules from growing for 5 years until another nodule popped up in my pancreas. Went on Sutent, killed that nodule and now I'm status quo, still stage 4 but treating it as a chronic disease.

Biggest secret: Stay Positive no matter what!

Best wishes and hang in there!

Male, age 67. (it'll be 10 years this Dec 3rd)

Thank you for the info and it does help to hear the good stories.  You are a survivor; God Bless.

Thank you for the info and it does help to hear the good stories.  You are a survivor; God Bless.

On Sep 23, 2011 11:32 AM Daughter28 wrote:

Family member will be starting interluken treatment.  Looking for advice for both the patient and the family.  Are there foods that help the patient go thru the treatment?  foods they should stay away from? during the treatment? after the treatment? How can the family help the patient?  We know the side effects can be difficult.  Any suggestions on how to minimize them? Any and all advice is most welcome as we face this challenge.

Thank you and God Bless.

My husband has stage IV kidney cancer.  Kidney removed a year ago.  He did IL-2 in Nov of last year (1 week in hospital, 1 week out, then 1 week back in)  His scans in Jan indicated the IL-2 had been working.  Put him back in to do it again.  As of his April scans, all tumors are shriveled and calcified over.  He now can wait 4 months for his next scan. 

If you look back in the postings, I posted, "IL-2- A day by day account"  I read such horror stories that I kept this log to help people who are trying to make a decision.  It is rough, but it is the only chance of a remission.

Good luck.  Prayers coming your way.

Marcy

Thank you so much for the info and taking the time to do the daily log while your husband was going thru the treatment.  I saw your log and sent it on to my family.   It is scary when you read some of the stories.  Yours has helped alot.  We are staying positive and hopeful.   

My prayers go out to you and your husband. 

I have read that if you don't have side effects with the IL-2 it's not working.  Obviously this is wrong.  You certainly have had success with the treatment with minor side effects.  Thanks for the positive information.  My family member has had 2 doses and no noticeable side effects. 

On Oct 25, 2011 12:30 PM Daughter28 wrote:

I have read that if you don't have side effects with the IL-2 it's not working.  Obviously this is wrong.  You certainly have had success with the treatment with minor side effects.  Thanks for the positive information.  My family member has had 2 doses and no noticeable side effects. 

Oh believe me!  He had side effects!  Major!  The outcome made the misery worth it however.  

In the 1st round, the side effects usually kick in about the 3rd dose.  It accumulates in your body and each dose brings on different side effects.

Good luck

Marcy 

You hear horror stories about IL-2.  My family member is on his 9th dose.  Has had some side effects but if you treat them immediately, they're minimized--nausea, rigors, dry mouth, red skin.  I think the hardest part for him has been the confinement especially since he is a very active person.  His 9th dose--he has gained weight and now a bit difficult breathing when getting up; but this is all expected.  Not eating much--but this too is OK.  The hospital watches him very closely. It will be great to get him home, but I understand the 2nd week of treatment, the side effects come on more quickly and more intense.

Hi there

I did interluken from october 2009 to march 2010 at rosewell park,

There are so many diffrent side effect you can get , you may get, you may not get.

Where i was there were 12 of us all getting the doses at the same time rounnd the clock for a week. Then 2 weeks off.

Then 6 weeks off for re scan.

I was lucky and went back 3 times 2 week. So got as many doses as my body could take.

Sometimes people were going home after 2 days or you didnt see them next time.

This is the most importanthing.

Be positive, do what they tell you, dont be scared what is happening to you they will help you.

And remeber it is at the end of the day helping you to stay alive.

I used to get there shut myself off in my room. And got on with it.

My wife was the only one iwanted to see and that was it.

But as soon as you finished the week within 2 days was back to normal.

Its a short time and not great time but at the end of the day if it works you you have to do it.

I was left with some spots on my lung and now on sutent and that is working for me as well.

So your family remeber need to be positive and all you round him as well.

I stay away from all negativaty as well.

Good luck

Jeff