IL2 blog

nsb748 said:

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?

 

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.

thaxter said:

Just one dose today

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

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$$.

thaxter said:

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.

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.

thaxter said:

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.

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.  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

thaxter said:

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. 

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