Started IL-2 today

I am taking Marcy's lead and posting as much as possible about our journey on IL-2.  I hope I have figured out how to do so appropriately.

Jack arrived at the hospital at 0800 and shortly after had a PICC line started.  For the benefit of those who don't already know - a PICC is a periferally inserted central catheter . Or, a central line that allows blood draws and meds to be administered in the same site without having to undergo many needle sticks.  He also had an EKG to check his heart and labs and urine tested.  Once everything was deemed ok, the first dose of IL-2 was given over 15 minutes .  They premedicated with benadryl and zofran in anticipation of any side effects.  At about 730pm, he began to run a fever, having shakes, increased temp and headache.  They gave tylenol for that.  It is now 10pm and they are drawing labs to get ready for round two.  Hopefully, symptoms won't get worse with the next dose.

Praying for a cure.

Jan

IL=2 Day 2.

Jack is having rigors and fevers really bad today. He's still not very swollen, but I'm seeing it coming on.  The meds are not really helping with the rigors - so, they are trying different combinations.  Forward we go.

IL2 - Day 3.  Today we wll be half way through this ordeal.  At least for this week.  The symptoms are worse, his skin is red, but no itching, he has fevers as high as 102, he is very swollen and he's not putting out much urine.  The nephrologist is happy with his kidney status - so far, the kidney isn't too mad, so that makes Jack happy.  His platelets have fallen and they are watching closely.  Hopefully, we will figure out how to help with the rigors.  The meds today have completely zonked him out.

Day 4 - Today we are over the half way mark.  As I write, Jack is getting number 10.  We found last night that giving Ativan 30 minutes prior to the IL2, taking away the benadryl and giving atarax for itching is the best strategy for Jack.  He's gained over 20 pounds, but his kidneys are still working well - he's not putting out much, but the kidneys are doing their job.  The swelling is due to vascular leaking, I'm told.  He is still able to walk the halls at least once a day and he's slow.  This treatment just ravages the body. I feel so bad for him.  He told me today, "I'm not being much of a gentleman" - poor guy, and I responded by telling him that "whatever happens in Vegas, stays in Vegas" and right now the hospital is vegas.

So happy that tomorrow is coming. Can't wait to go home.

Jan

12/3/12

Jack was unable to get his last 2 treatments, due to elevated liver enzymes.  He was discharged Saturday, with his picc line, 40 pounds of extra weight, some confusion and severe fatigue.  We got home and found that his picc second port wouldn't flush.  Of course, it was Saturday and they didn't give us the information on the home health agency. So, Monday morning - I called the hospital to get the information - needless to say - it's coming together.  And, tonight, the stinking second port flushed - don't know why.

I'm somewhat surprised at how edematous Jack is and also, the cough.  He developed a cough after the first treatment, they xrayed his chest and said it was fine.  He coughs all the time. He didn't do that prior to going in.  He seems depressed to me - just sitting around - it's just not his personality.

We will get his phosphorous checked on Wednesday, see the nephrologist on Thursday and try to rest up this weekend for next weeks trials.

Jan

On Dec 04, 2012 4:34 AM matlar25 wrote:

12/3/12

Jack was unable to get his last 2 treatments, due to elevated liver enzymes.  He was discharged Saturday, with his picc line, 40 pounds of extra weight, some confusion and severe fatigue.  We got home and found that his picc second port wouldn't flush.  Of course, it was Saturday and they didn't give us the information on the home health agency. So, Monday morning - I called the hospital to get the information - needless to say - it's coming together.  And, tonight, the stinking second port flushed - don't know why.

I'm somewhat surprised at how edematous Jack is and also, the cough.  He developed a cough after the first treatment, they xrayed his chest and said it was fine.  He coughs all the time. He didn't do that prior to going in.  He seems depressed to me - just sitting around - it's just not his personality.

We will get his phosphorous checked on Wednesday, see the nephrologist on Thursday and try to rest up this weekend for next weeks trials.

Jan

I did the pic line thing over a year ago home health taught me and i did it myself once a week my husband had treatments for 8 weeks last year chemo once a week and 55 rad treatments and a year later the lung cancer went to his brain he died october 30th just 5 monts after he found out it went to his brain i was his sole caregiver day and night he thanke dme everyday and told me how much he loved me i miss him after 31 years together we were kids growing up together being their for each other i am lost with christmas coming i am so depressed and grieving at the same time i pray for strength and comfort everyday to get through this

they gave Orville Demoral for the rigors.  In fact, they had the syringe all ready and within 2 minutes of calling for the nurse they were there ready. 

Orville gained over 40 pounds through capillary leakage.  The good news is, it did go away quickly. 

Thank you for writing about this. 

Good bless.

Marcy

Marcy:

How long did it take for the fluid to resorb?  It is now Thursday, almost a week since his last dose and he's only lost 12 of the 45 pounds he gained?  Is that normal?  I talked to the doc about it and he wanted to see us tomorrow to verify that Jack could undergo the second week.  I am a registered nurse, and I have to say - this was the worst experience I've ever had with a famly member.  That says alot considering my first husband died from brain cancer.  I just want it to be over and I want it to work.  Unfortunately, if it works, he has to have more.  Ugh!

Thanks for responding.

Jan

It took several weeks for the fluid to go away completely but he got partial reflief fairly quickly.

I'm sorry I didn't get to respond before this.  We were on the road for 3 days.

You will find the 2nd week is worse than the 1st.  It seems that the side effect kick in immediately right where they left off.  He probably won't be able to tolerate as many doses the 2nd week of treatment. 

It is not a fun procedure I know.   God bless and I pray that it works.

Marcy

On Nov 27, 2012 4:04 AM matlar25 wrote:

I am taking Marcy's lead and posting as much as possible about our journey on IL-2.  I hope I have figured out how to do so appropriately.

Jack arrived at the hospital at 0800 and shortly after had a PICC line started.  For the benefit of those who don't already know - a PICC is a periferally inserted central catheter . Or, a central line that allows blood draws and meds to be administered in the same site without having to undergo many needle sticks.  He also had an EKG to check his heart and labs and urine tested.  Once everything was deemed ok, the first dose of IL-2 was given over 15 minutes .  They premedicated with benadryl and zofran in anticipation of any side effects.  At about 730pm, he began to run a fever, having shakes, increased temp and headache.  They gave tylenol for that.  It is now 10pm and they are drawing labs to get ready for round two.  Hopefully, symptoms won't get worse with the next dose.

Praying for a cure.

Jan

Prayers are with you both.