Starting Biochemotherapy Monday. Would love to hear from others who have done it!

Some other things to bring are:

Some sort of rear end protection.  My first round I had severe diarrhea and it hurt sooooo bad when I exploded….  Yes, I said exploded….  If your BP drops too low they won't let you out of bed.  I still insisted on using the commode but it was right at my bedside.  I had one accident – very humiliating but by then I was sooo sick I just said G-d damn….  HINT- make sure nobody is in the direct path of your commode when needing to go.  You won't have much time to get there.  Be prepared for "accidents".

I used EMLA cream for round 2.  Prep H just didn't cut it, I needed pain relief.  EMLA is a topical lidocaine which lubricated and numbed my rear end.

Bring "the drops" or one drop – it is a Japanese product that is a powerful odor eliminator.  Trust me, the runs you get are a magnitude of order beyond anything most have experienced.  It is embarrassing to have people come in to your room after a blow out.  Sorry to be graphic, but the drops work instantly and effectively.  I need to be honest, it smelled like something had died inside of me….

Bring lubricating eye drops – in addition to your eyelids, ears, and everything else peeling, your eyes will dry out and hurt.  The eye drops and eyelid cream help.  So did the SARNA.

Bring cancker sore medicine.  I had ulcers in my mouth, throat, and inside of my nose.

zero water and ensure saved me.  I quit drinking everything and eating after 3 days because of the severe fluid build up I had.  I was too bloated to take anything else in.  The ensure did keep my electrolytes in better shape than had I not been able to keep it down.

Mostly you will sleep.

My symptoms came on suddenly around 25 min after my first infusion.  Was doing perfectly well and then suddenly got light headed and puked.  I learned from then on that was my pattern.  The nurses were able to adjust my meds so that they were working by the time I would have gotten sick.

Be aware of any side effects, don't hide them just so you can get more IL-2.

At the end of my first round, I started to bleed from my kidneys.  The first nurse blew it off saying I had my period.  Yeah except I had just finished it 10 days prior!  She didn't report it, I was too embarrassed.  Within a few hours I was hemorraging into my urine.  It was like kool-aid.  The second nurse was astute, called it in.  I almost needed a transfusion and another dose of IL-2 would have killed me.  Speak up.  My clotting factors and blood counts had dropped dangerously low in only a few hours time.

HAVE SOMEONE STAY WITH YOU AT ALL TIMES.  They can keep an eye on you for when stuff like that happens.  My mom rang the nurse to empty my commode.  I just couldn't do it.  If your nurse sucks, then tell someone.  Likewise, if they are attentive to you and are watching you like a hawk – tell someone.  Try to get them again for round 2.

One of my nurses couldn't care less that I was starting to have serious heart arrythmias.  No one came in to talk to us and I was too wiped out to care.  I know how to read EKG's and it was getting worrysome.  They watched me but I had stopped the IL-2 the day previously.  It was unnerving to feel your heart jump around in your chest, skip beats, and leave you breathless.

Not to scare you, but you will have some sort of toxicity.  Keep an eye out for it.  The patient is going to be drained and taken to the edge of what is humanly tolerable.

For me it worked.

After a total of 23 bags, I am, and remain NED since last summer, almost 8 months….  I was diagnosed in July '09, had surgery Feb. 10, and did IL-2 only for my one remaining met in my chest wall June – July 10.

Once you stop the IL-2, it only takes 2 weeks to be relatively back to normal.  The peeling took the longest to go away, and some fatiuge.  I went back to work 5 days after I was discharged from my second dose of IL-2 (out of vac & sick leave).  It is worth the effort, the recovery is VERY quick and IL-2 is still the best thing out there so far.  If it doesn't work then you can get into some great clinical trials.

Take pictures to document your remarkable jouney.  It is still hard for me to wrap my head around the fact I gained 33 pounds in 5 days.  My body became alien to me.  I needed to take pictures to remind me how hard I fought to become NED, or to at least show my young girls how hard mommy fought to be with them for as long as possible.  My pictues of my kids kept me going.

Best of luck, I am saving a spot for you in the 6% club – hope to see you here.

(PS – look in the archives for IL-2)  I have a detailed account of my experiences, much of what I have forgotten.  Jane's list is a good start, I added a few extras though.

Some other things to bring are:

Some sort of rear end protection.  My first round I had severe diarrhea and it hurt sooooo bad when I exploded….  Yes, I said exploded….  If your BP drops too low they won't let you out of bed.  I still insisted on using the commode but it was right at my bedside.  I had one accident – very humiliating but by then I was sooo sick I just said G-d damn….  HINT- make sure nobody is in the direct path of your commode when needing to go.  You won't have much time to get there.  Be prepared for "accidents".

I used EMLA cream for round 2.  Prep H just didn't cut it, I needed pain relief.  EMLA is a topical lidocaine which lubricated and numbed my rear end.

Bring "the drops" or one drop – it is a Japanese product that is a powerful odor eliminator.  Trust me, the runs you get are a magnitude of order beyond anything most have experienced.  It is embarrassing to have people come in to your room after a blow out.  Sorry to be graphic, but the drops work instantly and effectively.  I need to be honest, it smelled like something had died inside of me….

Bring lubricating eye drops – in addition to your eyelids, ears, and everything else peeling, your eyes will dry out and hurt.  The eye drops and eyelid cream help.  So did the SARNA.

Bring cancker sore medicine.  I had ulcers in my mouth, throat, and inside of my nose.

zero water and ensure saved me.  I quit drinking everything and eating after 3 days because of the severe fluid build up I had.  I was too bloated to take anything else in.  The ensure did keep my electrolytes in better shape than had I not been able to keep it down.

Mostly you will sleep.

My symptoms came on suddenly around 25 min after my first infusion.  Was doing perfectly well and then suddenly got light headed and puked.  I learned from then on that was my pattern.  The nurses were able to adjust my meds so that they were working by the time I would have gotten sick.

Be aware of any side effects, don't hide them just so you can get more IL-2.

At the end of my first round, I started to bleed from my kidneys.  The first nurse blew it off saying I had my period.  Yeah except I had just finished it 10 days prior!  She didn't report it, I was too embarrassed.  Within a few hours I was hemorraging into my urine.  It was like kool-aid.  The second nurse was astute, called it in.  I almost needed a transfusion and another dose of IL-2 would have killed me.  Speak up.  My clotting factors and blood counts had dropped dangerously low in only a few hours time.

HAVE SOMEONE STAY WITH YOU AT ALL TIMES.  They can keep an eye on you for when stuff like that happens.  My mom rang the nurse to empty my commode.  I just couldn't do it.  If your nurse sucks, then tell someone.  Likewise, if they are attentive to you and are watching you like a hawk – tell someone.  Try to get them again for round 2.

One of my nurses couldn't care less that I was starting to have serious heart arrythmias.  No one came in to talk to us and I was too wiped out to care.  I know how to read EKG's and it was getting worrysome.  They watched me but I had stopped the IL-2 the day previously.  It was unnerving to feel your heart jump around in your chest, skip beats, and leave you breathless.

Not to scare you, but you will have some sort of toxicity.  Keep an eye out for it.  The patient is going to be drained and taken to the edge of what is humanly tolerable.

For me it worked.

After a total of 23 bags, I am, and remain NED since last summer, almost 8 months….  I was diagnosed in July '09, had surgery Feb. 10, and did IL-2 only for my one remaining met in my chest wall June – July 10.

Once you stop the IL-2, it only takes 2 weeks to be relatively back to normal.  The peeling took the longest to go away, and some fatiuge.  I went back to work 5 days after I was discharged from my second dose of IL-2 (out of vac & sick leave).  It is worth the effort, the recovery is VERY quick and IL-2 is still the best thing out there so far.  If it doesn't work then you can get into some great clinical trials.

Take pictures to document your remarkable jouney.  It is still hard for me to wrap my head around the fact I gained 33 pounds in 5 days.  My body became alien to me.  I needed to take pictures to remind me how hard I fought to become NED, or to at least show my young girls how hard mommy fought to be with them for as long as possible.  My pictues of my kids kept me going.

Best of luck, I am saving a spot for you in the 6% club – hope to see you here.

(PS – look in the archives for IL-2)  I have a detailed account of my experiences, much of what I have forgotten.  Jane's list is a good start, I added a few extras though.