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IL2 blog

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Spent yesterday getting scanned and ported and got my first dose about six hours ago. No nasty side effects but I am told these will come with subsequent doses. Staff have all been great and my wife is here sleeping in a chair. Really didn't need any help yesterday but I am sure that will change too. this protocol is for 12 doses but doc says almost no one gets that many--average is between 5 and 10. He also says that how many doses you tolerate us not important as long as they see the level of toxicity they want. More later

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Doc says my kidney numbers are not great so we are skipping this dose and waiting for 5 pm

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Eye on the prize!  YOU CAN DO THIS!

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Your protocol sounds more like mine. I don't know how some people tolerate a dozen doses of this stuff. Remember that no matter how tough you are, the body has a different agenda. Here's hoping you get plenty of this nasty stuff. I was incredibly sick from it, but now I'm incredibly well. Do us proud. Make me look like a wimp. I'm so fortunate that I had the chance to go thru this. You will be too.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Be well we are all thinking of you and praying for you.

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

You know the end will justify the means. Be confident it is working And it will work.

todd121
Posts: 568
Joined: Dec 2012

You're on my mind. Hope you get great results with this. Please keep us updated. It will be over before you know it.

Todd

Jojo61's picture
Jojo61
Posts: 366
Joined: Oct 2013

Hang in there, Thax! Thinking about you!

Hugs,

Jojo

one putt
Posts: 72
Joined: Sep 2012

Don't be concerned about the number of doses. I took all 14 doses the first time and 11 doses the second time  but my results  didn't warrant continuig. Others, like Fox, have gotten great results with fewer doses. It's time for you to join Fox and the others getting great results.

danbren2's picture
danbren2
Posts: 183
Joined: May 2013

Thax,

     Just concentrate on the end result, hoping and praying for the best! You can do this!!

                              Love and prayers for good health!

                               Brenda

NewDay's picture
NewDay
Posts: 172
Joined: May 2012

Hang in there.  One day at a a time, one dose at a time.  

Kathy

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

So I got a second dose at 6pm yesterday and thought I was not going to have strong side effects but after almost three hours I started to shake. The warm blankets and Demerol had the desired effect and I slept after a while. Skipped the 1 am dose. BP was low and pulse high, oxygen low so they were checking on me most of the night. Managed to get the BP back above 90 so they did not put me on medicine. Waiting to see if the doc will order the 9 am dose, he just came in and we are go despite creatinine of 3.1

Jojo61's picture
Jojo61
Posts: 366
Joined: Oct 2013

This is amazing to have you tell us step by step as things are moving along. Hang in there, Thax! It will be worth it.

Hugs,

Jojo

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Thaxter,

Good luck. One of my favorite quotes is "the only way through it is through it," that fits IL2 treatment to a T. Keep fighting!

David

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Side effects are pretty predictable now. I get rigors about 2 hours and 45 minutes after each dose. No nausea or diarrhea yet and iv've got that pink glow all over. I am actually eating ok but the food is pretty bad. My daughter picked up some great pulled pork sandwiches tonight. One side effect I hadn't heard about is my mouth is sore and my tongue is coated and splotchy. So it looks like six doses for me and check out Saturday

Srashedb
Posts: 180
Joined: Dec 2013

Dick:

how incredible that you are able to post but glad that you are; hang in there! My only thought is if you enjoy pulled pork and might get sick later, don't eat it now.

just hang in there...

Sarah

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

My rigors were at 3 hours. Predictable. Demoral works quick. Glad you can eat. The little food I ordered that I couldn't eat still turns my stomach thinking of it. I mentioned to my wife this week that I picked up a water bottle and it makes me sick. I guess I'm not really over it yet. 6 doses sound good. Keep up the good work.

GSRon's picture
GSRon
Posts: 1215
Joined: Jan 2013

Thaxter... I have been reading your posts... you are another amazing person around the IL2 world ..  hope it works for you...!!

Ron

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Worst rigors yet and they had to give four shots of demerol. Other SEs have been high pulse, low BP and a fever after each dose. No nausea and I am still eating ok but the breakfasts are lousy. Yesterday lunch came just as I was about to rigor but I wolfed most of it down.

another dose at 5 today and then maybe only one more tomorrow. Creatinine peaked at 3.1 but held steady which helped the doc decide to proceed with the dose last night 

nsb748
Posts: 61
Joined: Feb 2014

Hang in there Thaxter. 

Very cool how you are providing the play by play, as this will help someone else get through the same scenario in the future.

Is it wierd that mentally I am picturing you getting your treatments as a Rocky style training montage?

 

danbren2's picture
danbren2
Posts: 183
Joined: May 2013

Thax,

     Thanks for the amazing posts! Stay strong and I wish you nothing but great results!

                                                       Love and prayers of good health!

                                                        Brenda

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

I like the analogy. I see the version where he fighta Drago. Thax, hope you are not in a Russian barn!

Keep fighting, aounds like you are taking it well.

todd121
Posts: 568
Joined: Dec 2012

I'm so glad you're doing good with the nausea and able to eat. Sorry about the other crap. I hope you're visualizing the IL2 killing those tumors and bringing you a healthy, peaceful glow which is sure to follow.

Best to you.

Todd

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Dose #5 was similar to the previous dose with rigors that took four shots of Demerol to get under control. Dose 6 this morning and possibly seven at 5 pm. One if the annoying SEs is my tongue is all coated and sore. Otherwise the red skin and now some swelling of the extremities

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Creatinine is peaked st 3.8 and I have gained about 13 lbs so just the one treatment today

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

You are doing better than I did. Keep it up! They'll put you on a diurectic for a week or so when you are discharged. Chemistry returns to normal pretty quick also. By this point, I was a little insane and couldn't wait to go home. I was an emotional wreck. The week off is something to look forward to. Really glad you are doing well. Kick cancers a$$.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

You're One Tough Dude!!

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

So I got every other scheduled dose or 6 out of 12.  In hospital I did pretty well all things considered.  Went home Saturday and was well enough to thoroughly enjoy UVa trouncing Syracuse in basketball--for those of you who don't follow ACC basketball this was epic.

Back home it has been a rough 48 hours.  My tongue was completely torn up and and the skin on my face is cracked and peeling, particularly my eyelids.  So reading and concentrating have been nearly impossible.  Pretty much spent Sunday dabbing at my eyes and applying lotion.  Also I just generally felt fluish with aching joints where I have some arthritis.  Could barely make a fist.  But in 24 hours after starting Lasix I lost over 10 lbs of water weight. Last night I took a leftover hdryocodone from my surgery and slept right through the snowstorm.

Not 100 percent today but my son came out to stay to help dig out of the 6" of snow.  I would try to help but they would probably not let me, so I guess I'll play the sick card.  Got to rest up to do this again in 7 days.  

Thanks to everyone for the good wishes and helpful advice.  I'll try to post some during week 2 if possible.

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

So my BP flirted with being under 90 at times and I could usually get them to let me move around a bit and take it again.  Otherwise they would have put me on a drip until I left and taken BP every 15 minutes.  I believe what guided my doc was my creatinine which went something like 1.9, 2.1, 3.1, 3.5, 3.9, 3.5, 3.4 on testing between doses.  But my output was good for the whole stay.  Also got fevers as high as 102 but usually under the warm blankets a few hours after rigors and returning to normal.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

The dry eyes reminded me. I stated that I felt like I was left on a raft in the middle of the ocean. Completely sunburned and uncomfortable. Then it was like I had my poor sore face and eyelids ground into the sand by a bully. Skin peel and dry skin flakes all over the house. I created a dust cloud everywhere I went. Reading was impossible and even TV wasn't easy. My hands and feet were red, inflammed and the skin came off in sheets. I couldn't touch my guitar for weeks. My fingertip calluses were gone and the skin was as soft as a babies a$$. All I could do was walk around like a zombie.  I'd go in each week motivated and excited. Then I would come home a broken emotional wreck. My wife was always trying to feed me but I could eat very little. Not like you. You are doing great! Keep up the good work. Get plenty of rest this week.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I am pulling for you big guy.

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

I am a Hokie, but it was a nice welcome to the ACC for the 'cuse.

glad to hear you are home and resting up for round 2.

when do they scan in the process?

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

while I was beet red all over while in the hospital the peeling skin is all above my shoulders so that is a blessing. Also my swollen hands and feet are subsided. My arthritic shoulders are flaring up and that is limiting my right hand playing guitar

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Too hasty on the no peeling below the shoulders ...

garym's picture
garym
Posts: 1651
Joined: Nov 2009

you're not in Michigan, you could be mistaken for a snow storm and be run over by a sleepy eyed plow driverSmile

Sounds like you are holding up pretty well all things considered, hang in there!

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

They won't need bloodhounds to find you, soon you'll be leaving trails of peeling skin all over the house.

David

a_oaklee
Posts: 161
Joined: Nov 2013

Thaxter.  I've been thinking of you and hoping for the best.  It sure sounds like you handled the experience really well.  Thank you very much for sharing your experience with us.  I hope you continue to feel better each day.

annie

JoanneNH
Posts: 55
Joined: Sep 2013

Please keep up the blog.  I'm especially interested because I just found out that, if I have signs of recurrence, this is the first line of therapy my oncologist wants to use.

How did you & doctors decide to start the IL-2?   You had surgery about the same time I did.   Were there any mets?   I don't know how to find your previous posts.

Thanks.

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

I first learned I had several small lung METS on 1/24 (18 days after PET/CT scan).  Was referred to Dr. Geoffrey Weiss at UVa for IL2.   Scanned again on admission 2/24 and all mets had grown.  I am checking in this afternoon for my second week of IL2.  After that it will be 30-45 days before getting scanned to see if it worked.  If no significant progression another round of IL2 treaments will be scheduled at least three months out from finishing the first.

Both nurses on the unit, and other patients on smartpatients.com have suggested that week 2 is almost always much worse than week 1.  But I am mentally ready for it. 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Thax,

Like fox, being able to share your experience as you go through it in the hopes that it will help others speaks volumes about the type of person you are. If a boatload of good karma can help at all you should sail through week 2. ROCK ON!!!

Good luck and Godspeed,

Gary

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Checked in today for week 2. Took an hour and three different nurses to put the needles in my dual lumen power port. Doc just examined me and we are go for a dose tonight. They will check creatinine after each dose. last time I maxed out at 3.8.  My normal is 1.9 with the one kidney. So here go into the breach again! Take that rcc

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Got one dose last night and rigors came on really late --3 hours plus. This mornin BP was 84/49 so they have me on a drip and an automatic cuff

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Got one dose last night and rigors came on really late --3 hours plus. This mornin BP was 84/49 so they have me on a drip and an automatic cuff

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

Not too many SEs but little sleep the last two nights. Don't know if I will get another omN day three as my BP has been below 90 most of the day and last creatinine was 4.3 

JoanneNH
Posts: 55
Joined: Sep 2013

Thanks!   Really appreciate your blog.   Hope your B/P stays steady and that creatinine comes down!

thaxter's picture
thaxter
Posts: 70
Joined: Jan 2014

I got only 3 doses during week 2 of IL2 because my creatinine shot up to over 5.  Also my BP was under 90 following 2 of the treatments which means they put you on a drip and an automatic BP cuff and take your BP every 15 minutes and adjust the meds up or down.  Took all night to get pressures consistently over 90 so they could.  My kidneys were still outputting but the creatinine was as high as they wanted to go.

Recovery has been slower mostly because of the skin issues and a lingering flu like feeling.  I'm peeling, itching and cracking from head to toe and the anti-itch medicine doesn't really eliminate the symptoms.  So I'm just sort of vegging out--appetite is good and most foods taste alright except for really salty things like potato chips.  Ensure was really helpful in the hospital because the food was so bad but I could get Ensure whenever I wanted.

So I'm in hold mode until 4/21 when I have a new CT scan and thankfully get the results from the Dr. the same afternoon.  If all goes well I get to do this again!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

One Tough Hombre!!!

Good to hear from you,now get some rest, you've earned it!

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Heres hoping for a positive CT result and hoping your kidney steps it up a little next time.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

I hope you are well and have positive results.

danbren2's picture
danbren2
Posts: 183
Joined: May 2013

Hoping the news is all good!

            Sending you prayers of good health!

                Brenda

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

You got some good doses in. Your body will make the most if it!

Rest up and get ready for a great scan and mire rounds!

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