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IL2 blog
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Feb 25, 2014 - 6:55 am
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 |
Joined: Jan 2014
Skipping 9 am dose
Doc says my kidney numbers are not great so we are skipping this dose and waiting for 5 pm
Joined: Nov 2009
Hang in there...
Eye on the prize! YOU CAN DO THIS!
Joined: Oct 2011
Go get 'em Thax
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.
Joined: Jan 2014
Be well we are all thinking
Be well we are all thinking of you and praying for you.
Joined: Jun 2013
Keep the faith
You know the end will justify the means. Be confident it is working And it will work.
Joined: Dec 2012
Wishing you well Thax
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
Joined: Oct 2013
Hang in there, Thax! Thinking
Hang in there, Thax! Thinking about you!
Hugs,
Jojo
Joined: Sep 2012
Doses
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.
Joined: May 2013
It will get better!
Thax,
Just concentrate on the end result, hoping and praying for the best! You can do this!!
Love and prayers for good health!
Brenda
Joined: May 2012
You Can Do It
Hang in there. One day at a a time, one dose at a time.
Kathy
Joined: Jan 2014
Now I know about the rigors
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
Joined: Oct 2013
This is amazing to have you
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
Joined: Nov 2011
Mid-week battles
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
Joined: Jan 2014
So we are still doing take one, skip one
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
Joined: Dec 2013
Dick: how incredible that you
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
Joined: Oct 2011
Hang in there buddy
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.
Joined: Jan 2013
Thaxter... I have been
Thaxter... I have been reading your posts... you are another amazing person around the IL2 world .. hope it works for you...!!
Ron
Joined: Jan 2014
Last night's dose
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
Joined: Feb 2014
Hang in there Thaxter. Very
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?
Joined: May 2013
Amazing!
Thax,
Thanks for the amazing posts! Stay strong and I wish you nothing but great results!
Love and prayers of good health!
Brenda
Joined: Jun 2013
Yo Adrian!!!!
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.
Joined: Dec 2012
Thanks for posting how you're doing
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
Joined: Jan 2014
Dose #5 was similar to the
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
Joined: Jan 2014
Just one dose today
Creatinine is peaked st 3.8 and I have gained about 13 lbs so just the one treatment today
Joined: Oct 2011
tolerate it well
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$$.
Joined: Jan 2014
You're One Tough Dude!!
You're One Tough Dude!!
Joined: Jan 2014
Back up for air
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.
Joined: Jan 2014
forgot medical stuff
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.
Joined: Oct 2011
rest up
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.
Joined: Nov 2011
Hey Thax
I am pulling for you big guy.
Joined: Jun 2013
Way to go
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?
Joined: Jan 2014
while I was beet red all over
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
Joined: Jan 2014
Too hasty on the no peeling
Too hasty on the no peeling below the shoulders ...
Joined: Nov 2009
Good thing...
you're not in Michigan, you could be mistaken for a snow storm and be run over by a sleepy eyed plow driver
Sounds like you are holding up pretty well all things considered, hang in there!
Joined: Nov 2011
Where's Thaxter?
They won't need bloodhounds to find you, soon you'll be leaving trails of peeling skin all over the house.
David
Joined: Nov 2013
best wishes
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
Joined: Sep 2013
Please keep up the blog. I'm
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.
Joined: Jan 2014
If you double-click on an avatar you'll see a medical history
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.
Joined: Nov 2009
We're all pulling for you...
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
Joined: Jan 2014
Week 2
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
Joined: Jan 2014
Got one dose last night and
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
Joined: Jan 2014
Got one dose last night and
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
Joined: Jan 2014
Got dose 2
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
Joined: Sep 2013
Thanks! Really appreciate
Thanks! Really appreciate your blog. Hope your B/P stays steady and that creatinine comes down!
Joined: Jan 2014
Got out Saturday--first post Thursday
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!
Joined: Nov 2009
OTH...
One Tough Hombre!!!
Good to hear from you,now get some rest, you've earned it!
Joined: Nov 2011
WOW
Heres hoping for a positive CT result and hoping your kidney steps it up a little next time.
Joined: Jan 2014
I hope you are well and have
I hope you are well and have positive results.
Joined: May 2013
Hoping!
Hoping the news is all good!
Sending you prayers of good health!
Brenda
Joined: Jun 2013
quality, not quantity
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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