IL-2 Question for caregivers

Hi Maria, My husband(Peck) went through two courses of IL2 (4 weeks total in ICU) this Spring.  He was unable to finish the final course because of some rare nerve damage in his arm due to the swelling caused by IL2.  I just spoke with him and asked him your questions about staying with your husband.  His response was "He would not have wanted to be alone."  I did stay with him in the room but definitely left each day to go to lunch or go for a walk or run.  I needed that for my own sanity.  I was glad to be there even though at times it was tough.  Even though the nurses are fantastic (we were in Charlotte, NC) there are things that happen that he needed my help with.  Getting to bathroom, finding nurses in an "urgency"( his central line was compromised one night and he was "bleeding out" and it was scary!), keeping beverages available, putting lotion on to help with itching etc…and probably most important of all, I was support, a distraction, comfort.  He handled the IL2 better than most in that he did not throw up or have horrible bathroom issues.  He did gain about 25 lbs each time and was very uncomfortable the entire time. 

It is hard to offer you advice because you do have three children at home but if I was    completely honest with you I would tell you tto stay with him if at all possible.  The other advice I would give is to have plenty of Sarna or Aveeno anti itch lotion on hand and several pairs of pajamas for him.  Peck would want to change every few days because of fevers,sweating etc…  He drank gatorade and water throughout the week to keep as hydrated as possible.  The good thing about being in ICU is that they have a "remedy" for almost every side effect, please tell your husband to not be hesitant to ask for relief from anything!

I wish both of you the best and send thoughts and prayers as he begins his treatment.  It is do-able just not easy!   Peck will get his third IPI infusion on Thursday.  He is doing well on IPI, itchy because of rash and tired but it is "do-able as well"  Hope this helps!

Hi Maria, My husband(Peck) went through two courses of IL2 (4 weeks total in ICU) this Spring.  He was unable to finish the final course because of some rare nerve damage in his arm due to the swelling caused by IL2.  I just spoke with him and asked him your questions about staying with your husband.  His response was "He would not have wanted to be alone."  I did stay with him in the room but definitely left each day to go to lunch or go for a walk or run.  I needed that for my own sanity.  I was glad to be there even though at times it was tough.  Even though the nurses are fantastic (we were in Charlotte, NC) there are things that happen that he needed my help with.  Getting to bathroom, finding nurses in an "urgency"( his central line was compromised one night and he was "bleeding out" and it was scary!), keeping beverages available, putting lotion on to help with itching etc…and probably most important of all, I was support, a distraction, comfort.  He handled the IL2 better than most in that he did not throw up or have horrible bathroom issues.  He did gain about 25 lbs each time and was very uncomfortable the entire time. 

It is hard to offer you advice because you do have three children at home but if I was    completely honest with you I would tell you tto stay with him if at all possible.  The other advice I would give is to have plenty of Sarna or Aveeno anti itch lotion on hand and several pairs of pajamas for him.  Peck would want to change every few days because of fevers,sweating etc…  He drank gatorade and water throughout the week to keep as hydrated as possible.  The good thing about being in ICU is that they have a "remedy" for almost every side effect, please tell your husband to not be hesitant to ask for relief from anything!

I wish both of you the best and send thoughts and prayers as he begins his treatment.  It is do-able just not easy!   Peck will get his third IPI infusion on Thursday.  He is doing well on IPI, itchy because of rash and tired but it is "do-able as well"  Hope this helps!

Maria

I went through IL-2 in Oct/Nov 2009 at Yale New Haven in New Haven Connecticut.  While my wife could have stayed with me around the clock, I insisted she not do that as I wanted her to maintain as much of her normal routine as possible.  I knew I would really need to depend upon her for the "week of recovery" following each week of IL-2.  I will say I was sooo happy to see her when she did come for her daily visits and viewed almost as a treat for me.  Many days she would leave work early and we would be able to spend several hours together.

Our situation was different as both of our children were grown and no longer living at home.  My suggestion would be to make plans to be with your husband full time but not exercise that plan unless needed since like most going through this mess, no two patients are alike.

Good luck to both of you and your children.

Dick

Maria

I went through IL-2 in Oct/Nov 2009 at Yale New Haven in New Haven Connecticut.  While my wife could have stayed with me around the clock, I insisted she not do that as I wanted her to maintain as much of her normal routine as possible.  I knew I would really need to depend upon her for the "week of recovery" following each week of IL-2.  I will say I was sooo happy to see her when she did come for her daily visits and viewed almost as a treat for me.  Many days she would leave work early and we would be able to spend several hours together.

Our situation was different as both of our children were grown and no longer living at home.  My suggestion would be to make plans to be with your husband full time but not exercise that plan unless needed since like most going through this mess, no two patients are alike.

Good luck to both of you and your children.

Dick

Maria,

I only have one hospitalization to base this on. I go back for 2nd biochemo on 08/24.

My husband and family would come in during the day and my husband would stay till 8pm or so and then go home. There were probably a couple of times I could have used him there-twice when I got a medication I had never had before. I didn't react well to these and don't remember what happened right after getting either one. I would recommend either you or the nursing staff stay right with him to see how he reacts to any new medicines.

Other than that, I don't think I really needed my husband to be there at night. Of course I won't be having either of those medications (Ativan or Thorazine) on my next visit.

Best of luck to you, Dave and your family,

Julie in Las Vegas

Maria,

I only have one hospitalization to base this on. I go back for 2nd biochemo on 08/24.

My husband and family would come in during the day and my husband would stay till 8pm or so and then go home. There were probably a couple of times I could have used him there-twice when I got a medication I had never had before. I didn't react well to these and don't remember what happened right after getting either one. I would recommend either you or the nursing staff stay right with him to see how he reacts to any new medicines.

Other than that, I don't think I really needed my husband to be there at night. Of course I won't be having either of those medications (Ativan or Thorazine) on my next visit.

Best of luck to you, Dave and your family,

Julie in Las Vegas

My husband, Mike, has now done 2 rounds (4 weeks) of Il2. I was scared to death when we went for the first round and had made plans to be off work to be with him as long as needed. After the first night and second day at the hospital, he seemed to be having minimal side effects so I went home and returned to work the next day. Because the hospital was so far away we kept in touch by telephone and I visited once during the week and then went to spend the day with him while waiting for  his discharge. I was able to work knowing that he was in good hands (he is being treated at a wonderful hospital) and I would be notified if things went wrong. After that first week, I would go to the hospital  with Mike to have his pick line put in and be admitted and then spend the first day with him and go home in the evening,returning to visit during the week and then return to spend the day with him while waiting for his discharge. We were blessed that he took the IL-2 treatment so well so I don't think anyone can know ahead of time exactly what to do until you actually experience it. You will know what you need to do when the time comes. I do know that if things had not gone so well for him I would have been there in a heart beat. Everyone reacts differently.

I wish you the best for your husband's IL-2 treatment. It is not an easy thing to do watching someone you love go through it, but we can only hope and pray that it is doing its job and fighting the nasty cancer that has brought us all to this site.

My husband, Mike, has now done 2 rounds (4 weeks) of Il2. I was scared to death when we went for the first round and had made plans to be off work to be with him as long as needed. After the first night and second day at the hospital, he seemed to be having minimal side effects so I went home and returned to work the next day. Because the hospital was so far away we kept in touch by telephone and I visited once during the week and then went to spend the day with him while waiting for  his discharge. I was able to work knowing that he was in good hands (he is being treated at a wonderful hospital) and I would be notified if things went wrong. After that first week, I would go to the hospital  with Mike to have his pick line put in and be admitted and then spend the first day with him and go home in the evening,returning to visit during the week and then return to spend the day with him while waiting for his discharge. We were blessed that he took the IL-2 treatment so well so I don't think anyone can know ahead of time exactly what to do until you actually experience it. You will know what you need to do when the time comes. I do know that if things had not gone so well for him I would have been there in a heart beat. Everyone reacts differently.

I wish you the best for your husband's IL-2 treatment. It is not an easy thing to do watching someone you love go through it, but we can only hope and pray that it is doing its job and fighting the nasty cancer that has brought us all to this site.

My husband, Mike, has now done 2 rounds (4 weeks) of Il2. I was scared to death when we went for the first round and had made plans to be off work to be with him as long as needed. After the first night and second day at the hospital, he seemed to be having minimal side effects so I went home and returned to work the next day. Because the hospital was so far away we kept in touch by telephone and I visited once during the week and then went to spend the day with him while waiting for  his discharge. I was able to work knowing that he was in good hands (he is being treated at a wonderful hospital) and I would be notified if things went wrong. After that first week, I would go to the hospital  with Mike to have his pick line put in and be admitted and then spend the first day with him and go home in the evening,returning to visit during the week and then return to spend the day with him while waiting for his discharge. We were blessed that he took the IL-2 treatment so well so I don't think anyone can know ahead of time exactly what to do until you actually experience it. You will know what you need to do when the time comes. I do know that if things had not gone so well for him I would have been there in a heart beat. Everyone reacts differently.

I wish you the best for your husband's IL-2 treatment. It is not an easy thing to do watching someone you love go through it, but we can only hope and pray that it is doing its job and fighting the nasty cancer that has brought us all to this site.

My husband, Mike, has now done 2 rounds (4 weeks) of Il2. I was scared to death when we went for the first round and had made plans to be off work to be with him as long as needed. After the first night and second day at the hospital, he seemed to be having minimal side effects so I went home and returned to work the next day. Because the hospital was so far away we kept in touch by telephone and I visited once during the week and then went to spend the day with him while waiting for  his discharge. I was able to work knowing that he was in good hands (he is being treated at a wonderful hospital) and I would be notified if things went wrong. After that first week, I would go to the hospital  with Mike to have his pick line put in and be admitted and then spend the first day with him and go home in the evening,returning to visit during the week and then return to spend the day with him while waiting for his discharge. We were blessed that he took the IL-2 treatment so well so I don't think anyone can know ahead of time exactly what to do until you actually experience it. You will know what you need to do when the time comes. I do know that if things had not gone so well for him I would have been there in a heart beat. Everyone reacts differently.

I wish you the best for your husband's IL-2 treatment. It is not an easy thing to do watching someone you love go through it, but we can only hope and pray that it is doing its job and fighting the nasty cancer that has brought us all to this site.

Hi Maria,

    My husband underwent IL2 treatments last November.  It's a very dramatic treatment and can have some hard side effects.  While it was hard to watch, and I didn't sleep for four days, I would not have wanted my husband to have to go through it without me.  He needed someone with him 24/7 and while the nurses were amazing, they have other patients to attend to.  It takes a physical toll, but emotionally he was a wreck because it ws so draining.

    I also have a daughter, and it was so hard to leave her home, but I needed to be with my husband, and don't regret making that decision.  I think you would regret not being there.

    Best of luck to you.  I hope you have great results.

Hi Maria,

    My husband underwent IL2 treatments last November.  It's a very dramatic treatment and can have some hard side effects.  While it was hard to watch, and I didn't sleep for four days, I would not have wanted my husband to have to go through it without me.  He needed someone with him 24/7 and while the nurses were amazing, they have other patients to attend to.  It takes a physical toll, but emotionally he was a wreck because it ws so draining.

    I also have a daughter, and it was so hard to leave her home, but I needed to be with my husband, and don't regret making that decision.  I think you would regret not being there.

    Best of luck to you.  I hope you have great results.

The main reason To be there for the first Two-3 bags of IL-2 is to learn the timing for the onset of the "Rigors" or chills after administration of the bag. and to get a nurse  in the room immediately upon the onset of either the Rigors or the onset of nausea.  The timing will generally hold throughout the week.  Don't hesitate to get the nurses in to counteract the side effects as soon as they start.  it's much rougher to back them off if the get a good headstart. What might be stopped with one quick injection and a couple of minutes can take two or three shots over a period of time (30-60 minutes of agony).  Starting about the third day,  one is more likely to be more out of things and not terribly alert as to what is happening to them.  I do recommend having someone there as much as possible during each of the 6 weeks of il-2 administration.  I listed my experiences in my profile as I went thru the experience.

The main reason To be there for the first Two-3 bags of IL-2 is to learn the timing for the onset of the "Rigors" or chills after administration of the bag. and to get a nurse  in the room immediately upon the onset of either the Rigors or the onset of nausea.  The timing will generally hold throughout the week.  Don't hesitate to get the nurses in to counteract the side effects as soon as they start.  it's much rougher to back them off if the get a good headstart. What might be stopped with one quick injection and a couple of minutes can take two or three shots over a period of time (30-60 minutes of agony).  Starting about the third day,  one is more likely to be more out of things and not terribly alert as to what is happening to them.  I do recommend having someone there as much as possible during each of the 6 weeks of il-2 administration.  I listed my experiences in my profile as I went thru the experience.