IL-2 Update

faithlou said:

9/14 first round

Week one done. Got 9 of the 14.  Never a dull moment, went into Afib on #8, stopped.  Fixed it and rested one day and took 2 more doses.  It' true, it's true!  Was does not kill you makes you stronger. 

Starting week 2 on Tuesday wish me luck!

I just got a chill. Good work. Boy, I really like tough women. I knew you would prove it to us. Amazing how strong we can be. They will need a cage to keep you away from completing the treatments. we are pulling for you. We do this together.

faithlou said:

Week 2 Done.

Ok. This is day 3 home from my week 2.  It did not kill me.  yea....  (Only felt like it.) Got 8 this time. Stop go. Stop go. Blood work all over the place.   Mike same here, massive dry skin and peeling.  Still itching and lotioning. Starting to feel better today was able to eat breakfast.  Now for the wait on scans in mid July.  Wishing the best for you on your upcoming scans Mike.

I feel your pain Lou (and David). That itching and peeling that come from the IL-2 are brutal; I watched how miserable it made John. And it's not a nice memory.  In fact, I'm reaching for the skin cream as I respond here. But you both have proven you're tougher than the enemy you're facing and I'm betting you come out on the winning side of this battle.  Keeping fingers and toes crossed.  You both rock. Stay strong and determined and feel all our support behind you!

DMike said:

Time To Rest

Lou,

Glad to hear you have round 2 behind you. Great job on getting through it! The itching and peeling are tough but they will pass. It's time to relax for a few weeks. Dr. Sosman told me recovery time is 5 weeks. I felt good enough after 4 weeks to get back on my bike. I've been riding most days lately. I hope you feel strong soon too and I hope IL2 is a huge success for you! I have my scan on Monday at an in-network facility, then I see Dr. Sosman on June 18th to see what's next. Thanks for the nice thoughts and well wishes. I'm sending them right back at you.

Alice, thanks for being so kind as usual. It helps as my scan date approaches!

--David

Lou and David, congrats to you both - keep up the good work!  I hope the upcoming scan confirms all going to plan David.

DMike said:

Latest

Thanks for thinking of me everyone! 

I met with my IL-2 doctor this week. It's sort of a long story but here goes. I had my scans done the week before I went to Vanderbilt for insurance purposes. So, I knew the results before I went to Vanderbilt. The results weren't good. All nodules had grown.

It was a little frustrating because my doctor at Vanderbilt had a hard time viewing the scans from the discs I brought with me, so he was going more on the radiology reports than the scans. He said he thought I had minor growth, so he wants to wait 4 weeks and do another scan in case there is a delayed response. He says the new scan has to show shrinkage (stability won't do) or we won't continue IL2. I'm supposed to contact him next week after he studies the scans more to see if he still wants to proceed with this plan.

My oncologist at UAB (local) says there is no way he can get another CT scan approved with insurance with such a short time span between scans, so I'll have to get it done out of network (maybe not covered at all) by insurance at Vanderbilt.

So, we thought we were going to get a definite answer last week, but we're back in waiting mode for 4 weeks.

Thanks again for thinking of me, David

 

 

 

Let's hope that the next scan shows marked improvement, but--if it doesn't--has your oncologist mentioned possible next steps -- Votrient/Sutent or trials?  I would love to see you get in a nivolumab trial; sure wish I could distribute them  to all my dear friends on CSN.

Just keep in mind there's belief by some ocologists of a latent benefit of IL-2. And considering how well John has done, I believe it.

Now I am going to share a totally unscientific observation that can probably be blown out of the water by people on this board much smarter than me. But I consider you a friend David, and I'm going to go ahead and share it. When you were able to take the high number of IL-2 doses, I was  a little concerned. If my memory is accurate, you and John hold the record on this CSN board as far as IL-2 doses (24 and 25 respectively) in recent years.  I even searched out other sites to satisfy my curiousity and you guys pretty much hold the  lead spot.  During the first round when John did the entire 14 doses, he had doctors galore stopping by and shaking the "IRON MAN's" hand. Many of them mentioned he was the first person they had known to do the entire 14. While this was encouraging for him, I remember on numerous occasions when this was going on, I'd ask the doctor. "Is this good?" And the answer I would get everytime would be, "it's remarkable"  or "it's extraordinary" but never did  they say it "was good" for his response chances. The doctor's responses combined with their disconcerting expressions suggested to me that it meant  just the opposite. I never shared this with John until after his treatments were over, but in hindsight, I think he saw it too. I've never seen anything in research equating IL-2 success with IL-2 dose tolerance, but I would be interested to see if my limited observations hold up on a larger scale.

On the up side, the IL-2 may have you set up to respond completely to the next treatment. Or maybe the four week scan will be better than expected. I certainly hope so.

Lou - this is in no way meant to discourage you. It appears to me (in my totally unscientific formula) that you're on course for complete response!

David - You're way too tough and too much a jock not to beat this thing. I'm confident your success is just around the corner. Know we're all proud of you and squeezing your hand  in support.